Cancer Revisited

Posted on May 10, 2017 by CNF • Posted in Articles Page, Featured Content, Slider Content • Tagged cancer, children, death, dying, Mary Ann Palmer, mother son, relationships, toddlers • Leave a comment

By Mary Ann C. Palmer

I was little, just five years old, alone in my bed, lying on my back with the covers pulled up to my chin; eyes wide open. The sharp scent of night seeped in through my bedroom window. I wanted my mother. But that was impossible. She had died a few months earlier and I was living with my Aunt Florie and Uncle Joe. My room filled with shadows. I couldn’t swallow; it was as if a hand was grabbing my neck. My heart raced, thumping hard against my back. My thoughts were shouting at me. Within minutes, I was swallowed whole by fear. I jumped out of bed and ran to Uncle Joe screaming.

“You’re just having a bad dream,” he said. But I knew I was awake. I knew it. This scene repeated itself. I would learn later that I was having panic attacks.

I practiced not crying over my mother. I practiced how to bury my feelings. The events, however, were stenciled in my memory, not fully formed, but etched there just the same.

***

I would sit on my mom’s lap; just the two of us on our living room sofa, she clapped my four-year old hands together and sang, “You better not shout, you better not cry, you better not pout, I’m telling you why…” I giggled and collapsed into her soft blue cotton robe. I nuzzled in as close as I could, inhaling the soft powdery scent of the skin on her neck. She must have just taken a bath because her hair was wrapped in a twisted towel. Then Nanny, my mommy’s mom, called me for lunch. I skipped into the kitchen.

***

I stood by the window in my brother’s room with my mom. She was dressed but wearing the twisted towel on her head that she always wore now. We watched from the fourth floor as my 8-year-old brother Gary, in his yellow slicker, walked out into the rain, down six steps–one, two, three, four, five, six we counted together–and then down the block on his way to school. We sang, “Rain, rain, go away, come again another day…” Just mommy and me.

***

Wandering into the bedroom I shared with my mom and dad, the crib I still slept in tucked behind the bedroom door, I looked for Poochy, my well-loved stuffed dog with floppy ears, but I couldn’t find him. I looked everywhere. I finally found him on my mother’s dressing table, right next to one of her bras. The bra looked funny to me, one side was filled with something. Why does mommy have wood in her bra, I wondered. Somehow I knew not to ask. So many things were secret now.

***

Aunt Anne, who’d been around a lot lately, had to leave before my grandma got here. “Will you be okay?” she asked my mom. Why wouldn’t she be okay, I thought. Aunt Anne left. My mom was sitting in my dad’s upholstered armchair in her blue robe and the twisty towel on her head. I sat on the arm of the chair to get closer to her. She was very quiet, and then I noticed tears rolling down her cheeks. “Mommy, what’s wrong?” But she didn’t answer; she just kept crying. Grownups aren’t supposed to cry. So I cried, too. I was scared, like when I was sure monsters were under my crib. But then my mom’s tears stopped. She put her hand under my chin and said, “Why don’t you go get your doll out of her carriage and show me how you can change her diaper.”

***

While my mom was sick, I spent more time with my grandma and her sisters. We went to Prospect Park and one day we even went to see the Statue of Liberty. After our outings, I remember opening the door to our apartment and looking straight through the living room to the bedroom to see the shape of my mother’s legs under the blankets through her partially opened door. I was always happy to come home to her. I loved my grandma and aunts, but I wanted to be with Mommy.

***

Dad lifted me, limp as a rag doll, out of my crib. My head rolled onto his shoulder. He carried me out to the living room. My brother Gary was already up, sitting in his pajamas on the floor, playing with his Legos. I was placed down next to him. My grandparents and a priest were sitting on the sofa. The priest went into the bedroom with my dad.

Gary and I played with his Legos. We made leprechaun houses out of the little white bricks. We made little cots for them out of folded pieces of paper. I didn’t see the leprechauns, but I believed they were there. Gary said they were. I wonder if he knew at 8 years old that if you catch a leprechaun he must grant you three wishes.

I would learn later we only needed one.

***

On my 5^th birthday Gary and I were at Aunt Florie and Uncle Joe’s house. Even though my mom and dad weren’t there I was hoping I would have cake. Aunt Florie and Uncle Joe did a lot of whispering that day. Maybe there would be a surprise. And there was. That night all of my relatives came over—aunts, uncles, and cousins. It was late. “I’m five now,” I thought, “so I guess I get to stay up late.” I never had a birthday party at night, and never with so many relatives. Everyone was dressed up, wearing black. My Aunt’s high heels clicked on the gray and white linoleum floor. The basement party room was smoky from cigarettes and cigars. Ice clinked in highball glasses. I pretended my Mary Jane’s were tap shoes as I made my way around the room. One by one, the adults wished me a happy birthday, then whispered something to each other.

***

The next day Gary and I were brought to stay with one of my aunt’s sisters; I didn’t know her but she and her husband were nice to us. Their grown-up daughter was there. She sold costume jewelry and she let me choose a ring from a big blue velvet tray. It was a long day. When we finally went home, I was surprised to see our living room filled with relatives, but the first thing I looked for were my mom’s legs under the blankets in her bed. She was not there and the bed was neatly made.

My father called me to sit on his lap. I asked him where Mommy was. “She went to heaven,” he said. I didn’t know where heaven was.

“When is she coming back?” I asked.

“She can’t come back,” he answered.

“Why not? I want to show her my new ring,” I said.

“If she comes back, she’ll be sick again. You don’t want that, do you?”

I knew it would be selfish to want my mom to be sick again. This was a big decision to make. I sobbed. The adults tried to get me to stop. “Look,” they said. “Gary stopped crying.” I tried to see reason in that, but I couldn’t. I shut down. I stopped crying. And did not cry again. “Look how good she is,” everyone said.

***

I wished my family had told me the truth. When I was old enough to read I found one of my mother’s funeral cards with my birth date on it. I realized the late night birthday gathering was not for me; it was for my mom. I still didn’t cry. So what should have been loss and grief morphed into fear and worry. I continued to have panic attacks. I worried about getting cancer my whole life, even as a child. Every little lump or bump was cause for alarm. And then I did get cancer, ovarian cancer, when my youngest child, Michael, was four. I became my mother, and Michael became me. But I thought I could do it better. I could protect this four-year old. I see now I was naÃ¯ve. Caught up in my own fight, I didn’t fully see at the time what Michael saw.

II.

At 37, I had surgery for what was supposed to be a benign tumor. It wasn’t. When I got home from the hospital I explained to Michael I had a tumor in my belly, and I had had an operation to remove it.

“What’s a tumor?” he asked.

“It’s like a little ball inside my belly that’s not supposed to be there.” I explained that I had to take strong medicine to make sure I got all the way better and the medicine would make me feel sick.

I couldn’t use the word cancer. I would fall apart. I knew it was very important not to cry in front of Michael. My mom tried not to cry in front of me, but she did, leaving me frightened and helpless, too little to understand.

***

I crept into the bathroom, holding the wall for balance, trying not to wake my husband Bob. The night was slanted, unfocused. I pulled myself up to the bathroom sink, balanced myself with one hand on the counter and adjusted my blue turban with the other. I looked in the mirror, half expecting to see my mother’s face gazing back at me. A wave of weakness passed through me; I needed to get back to bed before I passed out. I took small steps and deep breaths. I almost reached the foot of the bed when I collapsed. The fall at that point was almost a decision; I just didn’t have the strength to do this anymore. Bob rushed to me. I was still conscious, sprawled on the floor, and aware my turban had landed a few feet from me. Bob ran down the steps, returning with his mom and dad still in their pajamas, panic in their faces. Bob called ahead to the hospital, scooped me up and rushed with me to the car, his mother following with a blanket for me before she went back to the house. I was grateful she was there to take care of Michael. In the morning, she would tell him I went back to the hospital and get him ready for school. But I later learned Michael woke up first, padded up the stairs to my bedroom in his little blue feety pajamas to look for me, and I was gone. It wasn’t the first time.

I came home from the hospital that afternoon. I had been severely dehydrated, again, and was given IV fluids. Michael ran to me as soon as I got inside the house and hugged me with his whole body. His arms and body not quite enough, he wrapped one leg around me as well. He followed me upstairs, sat on the carpet in front of my bed and watched Ninja Turtles, his favorite show, while I slept.

***

A week later I had a fever. The chemo depleted my white blood cells, leaving me susceptible to serious infection. When my temperature reached 103; I called my doctor.

“Come to the hospital,” he said. “Enter through the emergency room and I will meet you there.”

It was early afternoon. Bob was coming to pick me up but I needed to make arrangements for Michael. Bob’s parents had gone back home to Clinton, NY, seven hours away. Michael would be home from nursery school soon. I called my friend Celeste.

“Can you take Michael?” I asked.

She always said yes. It was never even a question. Michael blended in easily with her five children. Five or six didn’t make a difference to her. But it mattered to Michael. “Mommy, I don’t want to be with Celeste. I want to be with you.”

***

I lay on the sofa watching Michael play as the late afternoon sun angled into the living room through our greenhouse, now empty. I no longer had the strength to tend the geraniums and spider plants. Hunched over on his feet and hands, Michael trotted around the living room. He occasionally scampered over and put his head on my tummy. I’d pat his head, and tell him he was a good little dog. He panted; I giggled. He was not just pretending to be a dog; he actually believed he was one. Michael embodied his fantasies; it was one of the things I loved most about him.

I waited for Eugénia and Ely to arrive, two of my best friends from when we lived in East Hampton. Older and nurturing, I looked forward to their company. When they arrived they were visibly alarmed by what they found: a too thin, exhausted woman laying on the sofa, a little boy playing at her feet. I was actually feeling pretty good that day, happy to be spending time with Michael. Eugénia immediately went to the kitchen to make me something to eat. Ely sat with me. As we talked Michael galloped in and out of the room, letting out the occasional bark. Our conversation faded as we focused on Michael playing, so obviously joyful, creating his own little world. Then Ely said, “Who knows how this is going to affect him.”

***

Eight months passed; it was time for my final surgery. I had prepared Michael over the past few days as best I could for the separation. The day I was due at the hospital I showered, dressed, adjusted my wig, and went downstairs to say goodbye. Michael was still sleeping. I woke him up. I didn’t want him to find me gone in the morning again.

“Michael, sweetie. I’m leaving for the hospital now.” He looked stunned. His eyes filled up as he clung to me.

“Why are you always in the hospital?” I held back my tears and told him I’d be home soon and in the meantime Grandma was going to take him to the Nature Center to see the owls. I knew from my four-year-old self that distraction only worked in the moment, but doesn’t touch the fear and anxiety. The talking we had done about mommy leaving hadn’t made any sense to him; only the visceral was real, the separation. Still, I thought, he can handle this.

***

The year ended. I survived. On a warm, sunny day in April, Michael turned five. His fifth birthday would be very different than mine had been. I gave him a black standard poodle puppy we named Harpo, who would become his constant companion for the next 15 years. We had birthday cake and he blew out the candles. Michael’s whole family attended the party—grandparents, aunts, uncles and cousins, not unlike all the relatives at my fifth birthday. But my birthday marked the end of my young life as I had known it. I would never see my mother again. Michael didn’t understand at the time, but he had what he wanted most for his birthday, the same thing I had wanted but didn’t get. Mommy.

***

Michael’s panic attacks started that summer. From our front porch, I saw my husband running up the long driveway carrying him. They had been out for a walk, holding hands and scouting for dogs, Michael’s favorite pastime even though he had his own dog now.

“Michael’s hyperventilating,” he said as he ran to meet me. I looked at Michael, gasping for air, his eyes frantic, pupils dilated. I recognized the panic. I ran into the kitchen and grabbed a paper bag.

“Breathe into this, Michael,” I said as I held the bag around his nose and mouth. He began to relax, his breathing slowed.

This would be the first of many panic attacks, the trigger obvious. I thought I had protected him. I did all the things my mother was not able to do: I had explained I was sick. I made sure he saw a child psychologist once a week. And I lived. Michael did not lose his mother.

But had I really protected Michael? He saw me rushed out of the house for emergency treatments. He saw me throw up in the kitchen sink because I couldn’t make it to the bathroom. He saw me wearing a turban on my head, just like the one my mom wore. He saw me lying on the couch for the better part of a year, and he saw the shape of me in bed, my legs under the blankets when he ran up the stairs to my room.

“Leave mommy alone. Let her rest,” I had heard his grandma say again and again.

Michael saw what I saw when I was four. I couldn’t prepare him for separation during a time of such intimate mother-child bonding. I couldn’t prepare him for the loss of routine, for the comfort of his mother kissing a scraped knee or lying down next to him at night to protect him from the monsters under his bed. Four-year olds can’t merge reason and emotion. I’m not sure anyone can.

Author’s Note: A child is born and we pray he or she will be safe and healthy and that we will live to see that child grow. We imagine a charmed life for this little boy or girl. A life free from harm and the traumas and mistakes of our own childhood. Then life happens. That is how the child really grows.

Mary Ann is currently writing a memoir about coming through life’s adversities with love, hope and spirit intact. “Cancer Revisited,” taken from that memoir, marks her first published essay. Mary Ann has worked as a book editor and tutor and currently is the owner of Synchrony LLC, a boutique agency specializing in web development and online marketing.

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What I Didn’t Tell Them

Posted on July 25, 2016 by CNF • Posted in Featured Content, Highlights, Slider Content • Tagged cancer, Jessie Scanlon • Leave a comment

By Jessie Scanlon

The Hot Wheels and Lego bricks strewn across our family room floor would usually have annoyed me. But that early spring evening the toys seemed to anchor me in the normal. I concentrated on my breathing and tried, mentally, to disconnect my facial muscles from my emotions. My daughter and son sat beside me on the sofa. Could my husband have been kneeling on the floor? Or standing?

“I have to have an operation,” I told my children with a smile that I hoped showed confidence. “It’s one that Grandma had 12 years ago, and that Aunt Sarah will have soon. I’ll be in the hospital for a week, and after I come home I won’t be able to drive you to school or pick you up or let you sit on my lap for a while.”

What I didn’t tell them was that I had breast cancer.

In the weeks since I’d been diagnosed with an almost matching set of invasive ductal carcinomas, I’d talked to friends and friends of friends who had been in the same situation or could otherwise give advice. Snippets of one conversation kept replaying in my head. “I was a basket case after my diagnosis…. I cried all the time…. My daughter slept on our bedroom floor for a year…. Years of therapy for the kids….”

I, too, cried often as I grappled with the diagnosis, but had managed to hide my tears from the children. My husband and I agreed that we would never lie to them. And we knew that eventually we’d tell them the whole truth. But I wasn’t convinced that it was necessary or even helpful, to scare them when my prognosis seemed good. Why burden them with the C-word?

I imagined my son Christopher telling a friend on the playground and hearing, “Oh – my grandpa died of cancer.” Could a four-year-old understand that that didn’t mean I was dying?

Many children, on hearing that a relative has cancer, ask if the disease is contagious. It’s not, of course, but a gene mutation had heightened my risk. It was why my mother had chosen to have a prophylactic double mastectomy, which my sister had now decided to do as well. Both children stood a 50% chance of having inherited my faulty gene, though the risk of actually developing breast cancer was greater for my daughter, Ella. So, no, cancer isn’t contagious, but …. Was a seven-year-old old enough to grapple with that?

Before the conversation, I’d met with a hospital social worker. “You know your kids best,” she’d said, and then sent me home with two backpacks, each containing a stuffed animal, a set of markers, and a workbook called “Life Isn’t Always a Day At The Beach” with fill-in pages like “If I could, I would put cancer in a rocket and send it to _______.”

I hid the backpacks in the guest room closet and continued to tell half-truths.

My hair began shedding after the second chemo treatment and this required an explanation. So as we sat around the dinner table one evening I reminded the kids about my surgery. “Now my doctors want me to take some medicine,” I told them. “You know how when you take Benadryl it can make you sleepy?”

They nodded. “Well this medicine has a funny side effect. It’s going to make my hair fall out.”

“Really?” Ella asked. I tugged a few strands from my head as evidence and then tossed the dead hair into the trash.

“Can I pull some out?” she asked.

“No,” I answered sharply.

Maybe I should have let her in – into my experience as a woman about to lose her hair.

Some cancer patients embrace their situation and hold head-shaving parties. A friend told me a quieter version: she’d helped a neighbor pull out her hair one spring day on the back porch, and as the tufts floated away in the wind, birds swept down to capture material for their nests.

But I took a different route. My hair stylist arranged for us to meet in the salon’s seldom-used men’s bathroom. A friend brought a bottle of Prosecco and three plastic cups and we toasted before he shaved my hair down to stubble. But it felt more like a wake than a party.

I cried when I looked in the mirror. I don’t know whether I cried from vanity or simply the shock of seeing my appearance catch up with the reality that I was a cancer patient. But I cried freely, knowing that the tears wouldn’t tarnish my maternal image, and then I went home and let the kids rub my fuzzy scalp. “Doesn’t it almost feel like a teddy bear?” I suggested. When my daughter won a cheap tiara at a fair later that summer, we snapped a picture of me wearing it, and laughed. Princess Chemo, I thought to myself.

I imagined that chemotherapy involved hours on the bathroom floor and Terms of Endearment-style drama. But I scheduled my treatment for the morning, took the anti-nausea drugs, drank gallons of ginger beer, napped, and most days was ready to be Mom by the time the kids got home from camp.

Ditto the 5 ½ weeks of daily radiation that fall. I’d shift from caretaker to patient only after making breakfast, packing lunches and dropping the kids off at school. When the kids asked why my chest looked so pink, I told them I’d forgotten to put on sunscreen.

I had crossed the line into dishonesty. My kids seemed fine – “They’ve weathered the year well,” I told those who asked – but I had lingering worries. So one November evening I went to a “Parenting Through Cancer” meeting at my hospital. Just as most exam rooms aren’t designed for the delivery of bad news, the conference room felt too dry for the subject.

Some of the women in the room had much scarier diagnoses than mine. All of them had been more honest with their children. I came home with two books – one for adults, the other for children – that, feeling emotionally depleted, I carelessly left on the kitchen counter.

The next morning, the colorful spine of the children’s book caught Ella’s eye and she opened Mom Is Getting Better. I tried to dissuade her, telling her that it was a boring story, but she insisted.

After a few minutes, she asked, “So did you have cancer mom?”

“Yes,” I told her. “Do you want to talk about it?”

“No,” she said.

When my husband and I agreed not to be completely honest with the kids about my diagnosis, I thought I was protecting them – that I was preserving their “normal.” And for the most part, my husband and I – helped by friends, babysitters, and my parents – succeeded. But I was also protecting myself, and an image of myself that I wanted my children to see: a strong, dependable, and brave parent who would be there to love and protect them.

Was I wrong not to tell them the whole truth? Perhaps. But I don’t regret our decision. “You know your kids best,” the hospital social worker had told me. But the truth is that I knew myself. And in those raw spring days, when I wore sunglasses to school drop-off and pick-up to hide my puffy eyes, I wouldn’t have been able to talk calmly about my cancer, let alone to calm any fears they might have had. First I needed to manage my own.

One winter morning as I was driving the kids to school, the radio tuned to NPR, a sponsorship message from the Cancer Institute of America came on. With every repetition of the word “cancer,” I resisted the urge to turn the radio off.

It droned on so long that my son, now five, said, “Blah, blah, blah. Who cares?”

“Chris! Mom had cancer. That’s why her hair fell out!” Ella said, in an exasperated big sister voice.

“Oh,” he said.

“Yes,” I replied, pausing at a stop sign, and then turning right. “I did.”

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An Almost Friendship Between Two Boys

Posted on June 1, 2016 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged boys, cancer, Emily Cappo, mother son, pediatric cancer, tweens • Leave a comment

By Emily Cappo

The T-shirt was simple: solid black with the words “Pauliestrong” written across the chest in bright red.

“C’mon, put it on,” I said to my 11-year-old son Matthew.

“I really don’t want to,” Matthew replied.

He was usually an agreeable kid, so his resistance didn’t make sense to me. I explained that Paulie was having a tough time and we needed to show our support. I kept pleading with him until he finally burst out crying.

“I just don’t want to be reminded of that time,” he admitted.

I immediately let it go, realizing that I hadn’t been sensitive to how Matthew understood all too well why Paulie needed support.

Except then a few minutes later, Matthew picked up the shirt and put it on.

“Okay, let’s do this,” he said.

I smiled and acknowledged his sense of empathy and ongoing resilience.

I had it all planned out in my head: Matthew and Paulie would meet, form an immediate bond over what they had in common, have play-dates and be best friends. Matthew was 11; Paulie was 10. We lived 20 minutes away from each other in neighboring towns. Their paths would never have crossed if it were not for my friend Julie who lived around the block from Paulie’s family.

As soon as Julie heard the news that Paulie was diagnosed with a rare type of pediatric cancer, she called me, knowing I’d know how to support to his family since Matthew had been diagnosed 2 ½ years earlier with the exact same type of cancer. Suddenly, pediatric cancer – and this particular type of sarcoma – didn’t feel so rare anymore.

Without hesitation, I told Julie to offer my contact information to Paulie’s parents if they wanted to reach out and talk to someone who had navigated this crisis. I had hoped to help them feel less alone – because no one really understands what it’s like to watch your child undergo treatment for cancer unless you’ve been there. And no one understands that the only thing worse than having cancer yourself is if your child has it. Only a ‘cancer parent’ knows how upsetting it is to helplessly stand by as your child rides out days of nausea because he refuses to swallow pills to control it. Or, how a ‘cancer parent’ has to put on a happy face as their child is about to experience his first MRI. I wasn’t sure Paulie’s parents would want to talk to me because sometimes families are private or overwhelmed or don’t want to compare notes, but Paulie’s mom emailed me immediately.

Over the phone, she was lovely and honest and didn’t hold back. I was awed by how calm she sounded. I wondered if I appeared that way during the early weeks of Matthew’s diagnosis. Our first phone call was an hour and a half and I’m sure I could have talked to her all night. Before we hung up, I reassured her that she could call me anytime about anything. I heard from her again a few weeks later because she wondered if I had any suggestions on foods that Paulie might be able to stomach since he was rejecting almost everything. We had similar challenges with Matthew and I was eager to offer suggestions and support.

Although the two phone calls solidified my connection to Paulie and his family, I knew it was more than that. I was invested. I barely knew this family and yet, I cared so much about them. At the hospital, where Matthew and I still went for his check-ups every month, we saw a lot of the same kids each time we were there. Yes, they all had been or still were in treatment for cancer. But, that was all we knew. We didn’t know their names, where they lived, or their specific diagnoses. I’d always smile and say hello to the parent accompanying their child and we’d exchange that unspoken greeting of relief that our kids were sitting in the waiting room, rather than in a hospital bed upstairs. But, other than that, our connection ended there.

I only had one instance where a mother of one of the children in the waiting room sat down next to me and started chatting. Her son recently had part of his leg amputated, and yet this mom was more concerned with getting him ready for baseball season. After sharing with me what type of cancer her son had, she outright asked me for details on Matthew’s cancer. I knew I couldn’t hold back after she had been so forthcoming, so I told her. And, she began to rattle off statistics to me and reassure me that I shouldn’t worry. I was glad Matthew had his earbuds in and couldn’t hear her. Instead of appreciating a fellow cancer mom reaching out, I was hoping the nurse would call us inside soon so I could escape the intrusion.

But, with Paulie’s family our context was different. They reached out to me. I didn’t push myself upon them offering unsolicited advice, or at least I didn’t think so. And I certainly didn’t spew survival rates at them. I tried to be a good listener and only offered my opinion if asked.

I was grateful I could follow Paulie’s progress over their Facebook page, a closed group they set up to keep friends and family informed. Unfortunately, Paulie’s treatment was not going as smoothly as Matthew’s did, but his case was more complex and required a more aggressive protocol. Paulie had several unscheduled visits to the hospital, including one on Christmas Eve that lasted until New Year’s Eve. Despite these setbacks, Paulie’s parents were relentless in their hope and faith and even mustered the strength to start selling the “Pauliestrong” t-shirts to raise both Paulie’s spirits, as well as money for pediatric cancer research.

Before I snapped the picture of Matthew in the T-shirt, I asked him how he could show his support beyond just smiling. He shyly gave a two thumbs up. After we posted it, Paulie’s mom posted a reply to us with the comment, “we can’t wait to meet you” underneath a photo of Paulie giving a two thumbs up in return.

Right then, I could envision their friendship growing out of that first introduction over social media. I pictured them having play dates, then hanging out through high school, maybe even going to the same college. And I didn’t picture this just because they both had the same type of cancer. I imagined their friendship blossoming because they were both sweet, gentle boys who also liked Star Wars and sports. And, I pictured it because I needed to see them both in the future, after they had kicked cancer’s butt.

Finally, a few days into the new year, Paulie’s dad posted something positive: the chemo was working! The comments poured in with “woo-hoos” and “hoorays” and cheers that this would be their year. But then the following morning, another post appeared pleading for prayers, except this time it sounded much more urgent than ever before.

It doesn’t matter what specifically happened. What matters is that this young boy was taken from his family way too soon. I debated whether to attend the wake, since I had never met Paulie or his parents in person. But then my emotions won. I knew I needed to hug them both, despite the possibility of an awkward moment. Except there was no awkwardness. Paulie’s mom gave me a warm greeting and hugged me right back. As we talked, she held my arm and thanked me for our support. When I greeted Paulie’s dad, he too gave me a sincere hug and recalled an email exchange we had had about the intolerable, hard to sleep on hospital chair-beds. They were both poised and genuine and it made me wish I knew them before their child was diagnosed.

When a tragic event like this occurs, a very common response is, “there are no words.” But, I couldn’t accept saying that. I knew I needed to find some words to attempt to comfort this family. And I found them in pictures. The pictures that Paulie’s parents had posted on the Facebook page during his treatment. In every single photo, Paulie was smiling, whether it was from a hospital bed or at home. I knew I wanted Paulie’s parents to know that I noticed that. The fact that he was always smiling meant one thing to me; that Paulie felt safe and brave, knowing his family was always by his side. Doesn’t every parent want their child to feel secure even in the most difficult of circumstances? Paulie’s parents clearly gave him that gift, until the very end of his too short life.

At the wake, Paulie’s mom had said to me, “I wish you could have met him.”

“Me too,” I squeaked back between tears.

Although Matthew and Paulie did not have the opportunity to meet in person either, I know Matthew won’t ever forget him. And neither will I.

Emily Cappo is a writer and blogger at Oh Boy Mom (http://ohboymom.com), she has recently completed a memoir, “Hope All Is Well,” which chronicles mid-life loss, re-connection, and revelation.

For more information on Paulie’s story and childhood cancer, visit pauliestrong.org

All God’s Children

Posted on December 7, 2015 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged Amy Roost, cancer, death, dying, mother son, mother-daughter • Leave a comment

By Amy Roost

My brother remembers that I never picked up after my kids when we came to visit mom. He remembers that after we left, the cleanup fell to him.

I, on the other hand, remember that nothing brought mom greater joy those last few years than spending precious time with her precious grandbabies.

Between visits, I remember taking her to the oncologist and pain specialist on my “days off.”

During these same years, I remember the empty Stoli minis in our neighbor’s side yard next to our driveway tossed there by my husband who passed out on the sofa most every night whilst I made airplane noises so my infant son would “open the hanger” and eat his peas.

I remember every detail of my firstborn’s spindly body after we brought him home from the hospital. I remember the surgical scar on his chest running 180° from front to back, the hole where feeding tube was, the red abrasions from tape that held in place the tubes that kept him alive those first three weeks.

I remember carrying 115 pounds on my 5’10” frame and friends telling me I was too thin, for once.

I remember the sound an epipen makes when I’d inject it into the thigh of my two-year old son who has just ingested a Valentine treat containing peanuts.

I remember the improbable phone call I received from my brother whilst dropping my dog at the groomer, informing me that mom had fallen, was on the kitchen floor and would I call an ambulance.

I remember dropping my kids at a neighbor’s who was preparing a meal for her father-in-law who was dying.

I remember getting to my mom’s house and finding her lying on the Italian tile in a fetal position, moaning.

I remember finding my brother in his upstairs bedroom shaking nervously as he raised a cigarette to his lips and his protestations that he couldn’t deal with mom because he was suffering from a poison oak rash.

I remember the beautiful hunk of an EMT grabbing my brother by the front of the shirt and ordering him to get his ass into the ambulance with mom because he had treated broken hips and he had treated poison oak and he guaranteed my brother that my mom was in far greater pain than he was at that moment.

I remember going to gather my children before heading to the hospital only to learn that my neighbor had left for another hospital with my son. He’d touched a tabletop that had traces of shelled peanuts on it. Ones the dying father-in-law had eaten earlier in the day.

I remember not knowing which hospital to go to first, the one where my mother was or the one where my son was being pumped full of prednisone and epinephrine.

I remember the broken hip was the beginning of the end for mom and I remember visiting her at the rehab center in Golden Hill.

I remember the enormous centerpiece I won at a dinner auction and took to her on my way home. I remember standing outside the locked sliding glass doors after visiting hours in my eggplant-colored cocktail dress and high heels and the kind orderly with a thick Jamaican accent who let me in.

I remember the smile that spread across mom’s face when she opened her eyes and saw me, and the flowers.

I remember her staying with us after she was released from rehab and a well-meaning friend telling my three- and four-year-old boys, “your Nana is dying.”

I remember the boys sitting on the side of her bed, my bed, and asking “Are you dying Nana?” And her telling them “Yes” and asking them if they would keep and care for her two beloved cats after she died.

I remember them both earnestly shaking their heads ‘yes’ and I remember thinking they had not the first clue what the word “dying”meant.

I remember mom’s last trip to the hospital when the doctors told us that the cancer had spread everywhere.

I remember my evangelical Great Aunt Edith trying to convert mom, asking her to accept Jesus Christ as her Savior. And I remember mom saying in her weakened voice there was no way, and Edith persisting and my having to ask my once-favorite aunt to leave the hospital room.

I remember my brothers and I gathered in that same room at Harborview Medical Center making confessions to mom about things we’d never told her, but somehow she knew anyway. Who knew that the night she came home from her job as a banquet manager at the Kona Kai Club and found me praying to the porcelain god, who knew as she stroked my back and held my hair, who knew that she knew I did not have the stomach flu, rather had been drinking fruit daiquiris all evening with my girlfriends?

I remember the hospital bed in her dining room that hospice delivered. I remember the round-the-clock vigil we kept, her brother, sisters, friends and children.

I remember being thankful she had a few days to say her goodbyes before losing touch.

I remember crawling into her hospital bed, spooning with her and whispering into the curve of her ear how much I loved her, how I was going to miss her so, and the boys were going to miss her. And how all would be okay, somehow. And that it was okay for her to let go.

I remember her restlessness and distress at 2:00 am, despite the Fentanyl patch and morphine.

I remember the hospice nurse arriving at 3:00 am and checking mom’s vitals. I remember her telling us that mom was attempting to leave her body and that for some it was more of a struggle than for others.

I remember knowing then that soon she would die.

I remember waking the others camped out on sofas and chairs and I remember someone saying “where’s Bobby?”

And I remember calling Pacer’s strip club and asking the bartender if my brother Bobby was there and would she please ask him to come home because his mother was about to die.

I remember the shot of morphine the nurse gave her being twice the normal amount.

I remember during those last long breaths praying but not hoping for the next inhale.

At 4:12 am there was no next inhale. I remember that. And holding her hand as it turned cold.

I remember my boys and their dad arriving before the sun and before the coroner. I remember taking them to her bedside to say their goodbyes.

I remember my three-year-old turning to me and asking in a somber voice he must’ve sensed was appropriate, “did Nana die?”

“She did,” I told him. And I’ll never forget his response: “Yes! We get the cats!”

I remember a few days later peeing in the powder room off the living room at mom’s place and my four-year-old coming into the bathroom and asking “what are all of Nana’s things doing in the bathroom?”

I could tell by the way he asked the question that he still didn’t understand what dying meant. So I explained what I had resisted explaining. “You understand that when people die they don’t come back?”

“Jesus came back,” he said plaintively.

“Yes, honey, that’s true, but Jesus was God’s son, you understand?”

“But mommy, we are all God’s children.”

How do I tell my four-year old that Jesus was God’s favorite? I just told him, “That’s true. We are all God’s children, but Nana’s not coming back.”

I remember a few weeks later while packing up mom’s closet finding a tiny white eyelet dress stashed in the back corner of the top shelf. I asked my mom’s sister who was helping me sort, “whose dress is this?” For I knew, having been 12 pounds at birth, that it couldn’t have been mine.

“That was Rebecca’s,” my aunt explained.

Rebecca. The baby girl my parents adopted before adopting me. The baby girl my mother loved with all her heart. The baby girl she and dad did not learn was half black until weeks after they brought her home from hospital. The baby girl the social workers pried from my mother’s hands so she could be placed with a black family for “her own good.” The baby girl my mother never talked about except that one time when my brothers had teased me mercilessly that they’d had another sister before me. And so I asked mom if it were true and she said, “I’m only going to tell you the story once.” And so she did. And kept her word.

And because our church pastor advised her to relinquish Rebecca, that it was in everyone’s best interest to do so in 1960 suburban Chicago, she never went to church again. Nor did my son, who still hasn’t forgiven God for playing favorites.

I remember all of that.

What I don’t remember is not picking up after my kids. Perhaps it just didn’t seem a priority at the time.

Authors note: Memory is the main character of this piece because as with any main character, the reader must grapple with its nature its malleability and fickle tendencies, how it can be manipulated to subjective favor, how it clashes with another’s memory and somewhere in the unattainable middle is the truth with the capital T. One capital T truth is that my son never forgave God for playing favorites, never returned to church–not even for the donuts.

Amy Roost is a technical writer living in San Diego. She recently won a call for podcast proposals sponsored by NPR and is currently working on the pilot episode of Finding Rebecca, a serialized account of the early civil rights movement, adoption, abandonment, and redemption due to air in Spring 2016. She has written for MariaShriver.com, themanifestation.net and Huffington Post, and is a co-author of Ritual and Healing (Motivational Press 2013). You can find her at Twitter at @sweetsweetspot.

We Both Got Sick, But I Didn’t Die

Posted on November 23, 2015 by CNF • Posted in Highlights • Tagged cancer, children, death, ill, illness, Jennifer Moses, sensitive, sick • Leave a comment

By Jennifer Moses

You can’t pee lying down on your back, which is something I’d never thought about before until, recently, I found myself marooned atop a bed pan unable to produce a single drop despite my bloated and distended bladder. I’d just had a hip replacement, and had someone come along and offered me a quick, painless way out of this life, I’m not sure I would have refused. I was on the young side for a hip replacement—and otherwise healthy and fit, and yet couldn’t fathom how I could survive the pain.

During those three post-surgical days in the hospital, I gobbled Vicodin, Percocet, Dilaudid, Tylenol. I peed and pooped in pans and pots, sometimes with only my elderly, Italian-speaking roommate in the audience, and other times—who knew? There was a whole world of orderlies and nursing assistants and cafeteria workers out there, in the hallway, just beyond the open door.

I was born pigeon-toed, and spent my first year or so in a metal brace designed to give me a more dignified gate. What followed were the usual childhood illnesses—flu, mumps, chicken pox, and many episodes of what my mother called “the whoops,” as in: whoops, gotta puke. And it was during this time that I realized—because it was glaringly obvious—that illness had its upside. In my case, it meant not only avoiding the terrors of school, but also being fussed over by my mother on the one hand, and our housekeeper, Mae Carter, on the other. I’d lie in bed while first one and then the other brought me Jello and soup, read out-loud to me, and best yet, let me listen to story-records on the family record player that they’d schlepp to my room. Danny Kaye. Grimm’s Fairy Tales. Bill Cosby doing Fat Albert. Later the record-player was upgraded to the portable TV, and I’d idle my mornings away with an endless lineup of sit-com reruns. And it would be like that, all day long, until, sometime in the late afternoon, paradise was shattered by the return, first, of my three siblings, and a few hours afterwards, by Dad.

Who said: “You’re looking better already! You’ll definitely be able to go back to school tomorrow!”

“But I’m sick. I have a temperature.”

Ignoring me, he’d continue: “You know what Brave Mister Buckingham would say, don’t you?” Of course I knew what Brave Mister Buckingham would say. I, along with my siblings, had been raised on Brave Mister Buckingham, a truly monstrous fable of said Mr. Buckingham who, as he goes about his day, suffers one physical calamity after another, until, by the end of the book of which he is the titular character, he appears to have lost most of his limbs. Nonetheless, after each attack on his person, he looks up and says: “THAT didn’t hurt!”

“THAT didn’t hurt!” my father would say. “You’re fine.”

And maybe I was, but that was hardly the point, now was it? Because the point, and something I felt that my father could never understand, was that I didn’t really belong out there in that rough-and-tumble world where Brave Mister Buckingham gets conked on the head by a falling safe and nevertheless bounces back up with a shit-eating, can-do grin. I did not belong in the world I was in; where swift, blonde athletic children routinely terrorized and humiliated slower, darker, non-athletic ones; where the prizes went to those who mastered their multiplication tables and fathers routinely disappeared to work not to be seen again until bath-time, or perhaps even later.

I liked it at home, in the sun, with my fairy-stories, my stuffed animals, and my mother.

There were any number of differences between the way my mother and the way my father saw and reckoned with the world, but the one that, I think, had the biggest impact on me and my siblings was that Mom believed that we could and would get sick, and that doctors could be useful in resolving matters of illness; whereas Dad didn’t. He’d lie for hours, flat on his back in the garage with spasm, rather than admit that perhaps he needed help or that something was wrong. And that’s because those with backbone, those with grit, didn’t succumb to something as trivial as illness or injury.

I have a fair number of friends who tell stories about going to school with 101 degree fevers, or taking out the garbage with a broken wrist, but on the whole these stories come from people who grew up in a home with either two working parents, or a single mom. A sick kid meant a missed paycheck. Then there are those whose parents just didn’t want to deal with the whining and sweat-soaked sheets. But it was a little different in our family, because in our version being sick didn’t mean missing a paycheck and didn’t pose an inconvenience. It meant a day home with our mother, who was fully up to the job of tending to a sick child. Because if ever there had been a woman who was born to take care of her children, it was mine.

Despite my inchoate longing to get something serious enough to merit sympathy, or even better, admiration—how I envied those lucky kids who came home from skiing vacations with a broken leg!—I never managed any real illness at all. Until, in the sixth grade, I did. I got an ulcer, and once it was identified as such, the rewards began to flow: unlike all the other kids, I got to choose my lunch from the teachers, lunch table, where they had such sophisticated offerings as cottage cheese and endless amounts of canned fruit cocktail; kids who’d formerly tormented me for my lack of athletic derring-do tiptoed around me, as if in silent communion; and at home, not only did my mother go around telling me how stupid she’d been not to have initially taken my complaints seriously (until she did, and took me to the doctor) but even Dad, I thought, felt contrite. At least he stopped talking about Brave Mister Buckingham.

Then, nothing. For years and years, I enjoyed blissfully good health. True, my first pregnancy was a drag, with morning sickness and full-bodied queasiness, bloating, and bouts of panicked terror as I contemplated the ridiculous fact that I, who was wholly unready for it, was soon to be someone’s mother. But the kid popped out all perfect and within a few months I was perfect too. So it wasn’t really until my second pregnancy, with my twins, that I got to be sick again, and that was because their idea of growing into healthy fetuses involved sending me into spasms of nausea and vomiting so violent that, towards the end of my first trimester, I landed in the hospital, badly dehydrated. Still, by the time I was allowed to return home, Mom had once again come to the rescue, providing me not only with help in the form of a woman named Cheryl whom she’d hired to look after me and three-year-old Sam during the long days when my husband, like my father, disappeared into Downtown Washington Lawyer World (when I say “hired” I mean “hired and paid for,”) but also with the treats of my childhood sickbed: chicken and dumplings; chocolate pudding; decorating magazines; and most of all, herself—Mom, in all her wonderful, glorious Momness. She simply knew how to nurture, how to say the exact right thing or keep silent or just look at me in the way that made me know that everything was okay. Night, night. Sleep tight.

Whereas several months later when I was eight months pregnant, Dad called one day to tell me that he and Mom were about to go to Maine for a two week vacation, and explain that, while they were gone, he expected me to water his flower gardens, in Virginia, about 7 miles away.

“But Dad,” I said. “I’m on bed rest.”

“Hmmph!” he said. “Stuff and nonsense!”

Naturally, the twins, born full-term and healthy, didn’t give rat’s ass that the blobs of warm softness that provided their mouths with that sweet juicy utter perfection had spent the past nine months alternatively praying for a miscarriage—please dear God anything to end this puking—and begging God to ignore that last one—and we all just kept keeping on with the usual minor scrapes and cuts, fevers and colds, until, nine years later, when the now-five-of-us were living in Glasgow, Scotland, during my husband’s sabbatical year (he was by then a law professor) I was diagnosed with breast cancer. By then, though, Mom had cancer also, only her cancer, which had been diagnosed years earlier, was a killer. Dad, in Washington, sent emails telling me not to let Mom know that I was sick, explaining (rightly so) that this was information that, if shared, wouldn’t be good for either of us, and additional emails telling me that, like many women of his acquaintance, I too would “bounce right back,” I had surgery, then six months of chemo, then a month of radiation, and it was behind me. By the time my mother died, in February of 2004, my biggest health issue was that I couldn’t stop crying.

And also, my hip hurt, and as the years passed, it began to hurt so much that walking became problematic. Was it genetic? The result of my own bout with chemo? My decades of depression? Who knew?

My husband contends that I like to be sick because some small part of me still thinks that it’s only through sickness that I can get the attention I still crave, that sense of being a beloved child safe at home and under the watchful eyes of its doting parents. Or, in my case, parent—because my father was mainly at the office, and nursing wasn’t exactly his specialty. Though I like to think that I’ve outgrown the little girl who’d pour Baby Powder on her face in the hopes that she’d look pale enough to miss a day of school, my husband isn’t entirely wrong, so much so that I was actually looking forward to my hip replacement, to what I was imagining as a vacation from trivia—there I’d be, lying in my hospital bed, blissed out on addictive pain killers, while my loved ones fussed around me, and sent me flowers. Which wasn’t exactly how it went down at the hospital, in part because my blood pressure kept bottoming out so I didn’t get to have enough of the really good drugs, and in part because, no matter what, the first few days after hip replacement surgery are nasty. My 84-year-old father, who’d sworn he’d be in the hospital to greet me when I swam up out of anesthesia, was felled by a stomach bug, though, not that he admitted it, and had to make do with phone calls that I was too weak to take and flowers. But once I was home, he and I started bonding over my recovery.

Me: “Guess what I did yesterday, Dad?”

“What’d you do?”

“I walked to the bathroom!”

“That’s my girl.”

“And this morning I walked without my walker.”

“You’re a champ.”

Or: “That bitch nurse kept me on a bedpan for forty minutes. I thought I was going to die.”

“Sounds dreadful.”

“But now I’m back and running Dad—the home health rigged up this old-person’s toilet set, so I can go any time I feel the need.”

“Now you’re talking! You show them!”

And so here we were, at 54 and 84, hurdling and hurtling back through the decades, spinning and tumbling all the way back, until we arrive, again, to the early 1960s, where the grass is always green, and the sun is always shining, and my beautiful young dark-haired mother confers with Mae in the kitchen over what to prepare for dinner, while at my end of the house I’m learning to walk and to use the toilet, only this time, instead of being downtown at the office with all the other dads, my father is at home, with me, in the Enchanted Pee Pee Forest, the same place where my siblings and our dog George and our several bunny rabbits and my own special family of stuffed bunnies live, in an endless round of snack time and clover-smelling time and nap-time and story-time.

“You can climb the stairs by yourself!” Dad says on the phone. “Wow! That’s marvelous!”

And what neither of us says is that, though Mom took every form of chemo available to her, that she spent years suffering from nausea, pain, various infections, loss of hope, bloating, emaciation, bruising, punctured veins, burning sensations, and sheer, raw misery, it did hurt, and she was never all right again, until, by dying, she slipped through her pain, and, leaving us, left us forever.

Jennifer Anne Moses is the author of Tales from My Closet, Visiting Hours, Bagels and Grits, and Food and Whine. She’s also a painter. She and her husband live with their two dogs and cook a lot for their grown children, who like to come by to do their laundry and get fed, in Montclair, NJ.

I Know You Had Surgery, But How is the Dog?

Posted on November 3, 2015 by CNF • Posted in Blog, Featured Blog Posts • Tagged breast cancer, cancer, children and childhood, dogs, family, family dog, Francie Arenson Dickman, motherhood, parenting, recovery, surgery • Leave a comment

By Francie Arenson Dickman

One look at the dog and I knew that my surgery had been upstaged.

This was going to be like any other road trip home from Wisconsin to pick up stuffed animals that had been accidentally left on the camp bus, except that on this one, I needed to tell my kids I had cancer. I’d been stewing on what I’d say for sometime, and being a writer, a fan if there ever was one of controlling the narrative, I had my presentation scripted. I’d kick off with, “This is going to sound worse than it is.” I’d wrap up with something like, “It’s no big deal.” In the middle, I’d drop the phrases, “a little bit of breast cancer” and “a little bit of surgery.” I’d be breezy. I’d be calm. And I’d be acting. Isn’t that so much of what mothers do? Spin-doctoring is not in the basic job description. But it should be. All mothers, at some point or another, will pretend the new hair-do isn’t hideous. Or the bloody gash is just a little scrape. Or the bi-lateral mastectomy and reconstruction will, for her kids, be just another day, only without their mother. I suppose these maternal charades fall into the category of the little, white lie. We mean well. We’re out to either make our kids feel better or ourselves look better so that in some therapist’s office somewhere down the line we’re not catching the blame for something.

My own mother, for example, in effort to introduce healthy foods, once tried to pass off fish as veal. She disguised the fish in breading so that it resembled her familiar veal cutlets. “Tonight’s veal is going to be delicious,” she told us gesturing, without pause, to the baking sheet on the counter. But then she put the “veal” in the oven, and the house began to stink. Like fish. Her cover was blown. We ended up at McDonald’s.

But where would we end up aside from a therapist’s office if my own cover was blown, if my daughters had to digest the full story of my bout with breast cancer, including the risks of surgery and my own fear? And so, I went to great lengths to ensure that during the weeks of my surgery and subsequent recovery, our house would run so smoothly that my girls, both 14, would barely know I was gone. There wouldn’t be a wrinkle in their routines, let alone their psyches. I arranged for dinners. I typed out schedules. I even sent the dog away to a sitter. As anyone who’s ever had a dog knows, if you are attempting to control a narrative, a dog in the picture is the last thing you need.

I went into the hospital. I came out. All with little issue, fanfare or expression from my daughters, which at the time—right up until the dog was in a fire at the dog sitter’s—I took as a sign of their strength, that they’d bought into my campaign of “It’s no big deal.” It didn’t cross my mind until, as I mentioned, the dog got stuck in a fire, that the absence of their questions and their stoic sweeping of floors while their mother sat motionless on the couch was, in fact, a charade, as well. They didn’t know how to handle the situation, I’m sure they’ll be telling their therapists, because their mother, who was plugged into Netflix, binging on Friday Night Lights and Norco, wasn’t giving them the words or the tools or the permission. In fact, they’ll tell their therapists, their mother was beginning to enjoy herself.

This was true. While a six-hour operation does seem like a ways to go for a little time off, I’d be lying if I didn’t say that a part of me wasn’t enjoying the role-reversal. “There are many positives that come from cancer,” people all along my journey had told me. All along, I’d added the words, “assuming you survive,” in my head. But now, with the surgery behind me and drugs in my system, I was beginning to buy into this narrative, too. “It’s a blessing in disguise,” I told my husband. I was getting rest and our kids, who lacked in household skills, were gaining experience. “It’s a win-win,” I said from the couch as my children took in the mail and boiled the noodles.

Soon after I convinced myself of this, the house began to smell. Not like fish but like smoke. The dog hadn’t been burned, but he’d inhaled smoke for hours on end. My husband had collected him from the sitter’s while my kids and I, exhausted from pretending that everything was no big deal, were still asleep. When we awoke, there it was—a furry hole in my narrative—another patient on the couch. This one couldn’t open his eyes. Or wag his tail. Not only couldn’t he move, but he couldn’t breathe either. My first reaction was, of course, to curse the situation. One look at the dog and I knew that my surgery had been upstaged. Next to him, the beloved dog, I became as I’d been wanting to be seen: no big deal. Forget the research I’d done on how to talk to your kids about cancer, I was now scrambling to explain the term hyperbaric chamber, which is where the dog spent the next four days at a hospital in the hinterlands with my children and my husband at his side. So long to the mother being mothered. So long to the round-the-clock care. So long to the drugs, even, as I now needed to be lucid to care for myself. So long, too, to my charade. Our house turned to chaos. My own mother, who I’d forgiven for the “veal” incident, came over. She did the laundry and brought me food, while I murmured, “Be careful what you wish for.”

Only after the fact, after the vigils were held for the dog, the tears over the dog dried, the worry about the dog’s prognosis died down, could I see that the dog did us a favor. The dog himself had wagged the dog. He’d made me seem in relatively good shape, but more than that he was, as he always is, a diversion. He vomits on the car keys as we’re rushing to leave. He pulls the last piece of steak off the dinner table. He lightens the mood, relieves tension and makes us forget our concern of the moment, which on that day at that time, I know, was me. At least that’s the story I’m telling myself now.

Francie Arenson Dickman is a contributing blogger to Brain, Child. Her essays have also appeared in The Examined Life, A University of Iowa Literary Magazine, The Chicago Tribune, and Literary Mama. She lives outside of Chicago with her husband and twin daughters and is currently completing her first novel.

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My Son Lived

Posted on October 29, 2015 by CNF • Posted in Blog • Tagged cancer, children and childhood, death, friendship, grief, loss, motherhood, Nicole Scobie, parenting • Leave a comment

By Nicole Scobie

We are cancer moms. We didn’t break down, at least not in front of each other. Those are tears that, once begun, can’t stop.

Most mom friendships are formed because of a shared mutual experience, like two kids in the same daycare, the same class, or team. The moms get to know each other, first exchanging a few words at drop-off or pick-up, then warming up over a cup of coffee. Over time, they become friends. The shared experience of their children’s similar activity creates a bond that can last for years, as the moms watch their kids grow up together.

Natalie and I met that way, when my son Elliot was 5 and her daughter Zoé was 4 years old.

Our kids had shared the experience of cancer.

Elliot was diagnosed two weeks after starting school. A 6-inch tumor in his abdomen, multiple smaller tumors all over his lungs, making it stage 4. Zoé’s was in her bone marrow, requiring high intensity treatments.

Almost a full year of some of the hardest days (and nights). I held my son’s hand as he asked why this was happening. I talked to him about life and death, telling him how brave he was, while I was shaking with fear inside.

Friendships between two moms born this way are like no other — there are so many things that fall away when you’ve seen each other at your worst, at your angriest, at your most anxious and at your most relieved.

Bizarrely, despite the horrific situation we found ourselves in, the thing that drew us closest was laughing together. Nothing beats watching your child squirt a syringe of liquid at the doctor with another cancer mom there to witness it and laugh hysterically with you later. Laughing is great — I actually think laughter might just be the antonym of fear.

The downside of these friendships is that you now worry for another child. The burden is huge — knowing just how serious the situation is, feeling the fear because it is so bitterly familiar.

And then, the magic word: remission. No cancer left. Clear scans.

Both our kids entered the world of “normal,” where they could play outside with other kids again, where their hair started to grow back, where they, and we, were free of the hospital except for the regular three month checkups.

Natalie and I founded a non-profit organization together, to raise funds for research and help other families. One out of four children with cancer will die — we wanted to change that. We worked endless hours at it but still laughed at some of the ridiculous situations we found ourselves in. Speaking in front of large groups, for example, something we both hated, became a regular thing. What a strange path our lives had taken.

And meanwhile, there were always those three month checkups, to make sure the cancer hadn’t come back. The stress of watching Elliot lying on that table, me standing nearby with a heavy lead vest on. The technician telling him over the intercom, “Ok now lie very still.” The table sliding through the scanner. “Now take a deep breath and hold it.” The table sliding back through the scanner. “Ok now breathe.” I’d exhale. “Now we’ll do it again, lie very still…”

And the wait until days later, when my husband and I would be escorted into the oncologist’s office to get the results. Scanning the face of the doctor and nurse for some sign. Relief streaming out of me like hot air from a kettle after finding out all is clear. No relapse. We were free to go, back in three months.

First thing out of the meeting with the oncologist, as we walked down the hallway and before we got to the hospital elevator, I texted Natalie. We were both thrilled, relieved.

And then, a few months later, I got Natalie’s message, when she was in the hallway of the hospital.

But it was not good news this time.

Zoé had relapsed.

The cancer was back.

You are expecting me to write that we cried together and supported each other, like close friends do in the movies. But we didn’t. We are cancer moms. We didn’t break down, at least not in front of each other. Those are tears that, once begun, can’t stop. And won’t help anyone get through what happens next.

We didn’t cry. We fought back. We rallied. We researched and learned about this cancer, about the treatments. When one treatment failed we were ready for the next. Up until that last day when Zoé had bravely endured a brand new promising treatment and her parents went in for the results to see if this time, it had finally worked.

And I got the message from Natalie. I can’t say what I felt. Empty, I think.

The cancer was still there. The scan showed a little 4-year-old body, full, from head to toe, with cancer cells.

We knew even before the oncologist officially said it that there would be no more treatments.

Zoé died in her mother’s arms two weeks after that text message. I spoke at her ceremony. I couldn’t face the audience so instead I turned and spoke to the big, poster size photo of Zoé on the altar next to the flowers and toys placed there. I thanked her for what she had given me, the chance to have known her, the friendship with her mom, and I thanked her for her laughter. Zoé laughed a lot too.

My son lived. Her daughter died. There was no logical reason for it to turn out that way. It just did. We got lucky with one and unlucky with the other. Despite it all, we are still close friends.

Almost two years have passed. Elliot has checkups every six months now. I text Natalie right away, and she’s relieved.

Our non-profit has grown and now funds critical research, and supports families while their child is in treatment. It’s what we always wanted. Even though things didn’t turn out how we wanted.

Nicole Scobie, mom to three great kids, one of whom is luckily in remission from stage 4 cancer of the kidney.

Author’s Note: Nicole and Natalie now run zoe4life.org, the non-profit organization that supports kids with cancer and their families.

Photo: Samuel Zeller

Cancer Mom

Posted on September 13, 2015 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged cancer, child cancer, daughters, illness, Kristen Brookes, mortality, mother, mother-daughter, mothering, sickness • Leave a comment

By Kristen Brookes

I am a cancer mom. Like a gymnastics mom or a swim mom, but different.

At gymnastics, we would all huddle around the window into the gym, admiring the strength, grace, and coordination of our daughters. Seeing how hard they were all working. Sharing in the pride and excitement as one child did a beautiful beam routine or nailed a back handspring for the first time. We passed many hours in a very small room with long, rambling chats. We talked about our children together, and we shared stories of our lives. We were friends.

At cancer, although I smile at the familiar faces from weeks spent inpatient on the 8^th floor, compliment the cleverness of a dad bringing a futon on the elevator, and show another mom a picture of how great my 13-year-old daughter looks in her new wig, I do not talk with other cancer parents. We are not cancer moms and dads together.

I am sure some people create community around their children’s cancer, but I do not see a lot of parents happy to see one another at the clinic, picking up their conversations where they left off or sharing the mundane details of their lives. I believe we are not cancer moms together because what we have to share may not be very nice. I do not want to know other children’s diagnoses. I don’t want to know how other children are doing because I do not want to be more afraid or experience more pain. I do not want to hear of more bad things that might happen to my daughter. I do not want to know children who might die. And I do not want to know their parents. I do not want to feel their loss. And I do not want the possibility of my own loss to be any more real than it already is.

Rather than connecting with the cancer moms, I google-stalk their kids, hungry, despite myself, to learn about their diagnoses and prognoses, finding out things I didn’t know. I feel a silent empathy for the mother whose child kicks and screams every time she has her port accessed, extending their clinic stay needlessly and aggravating even the most patient of nurses. And I feel both disturbed by and sad for the fifteen-year-old boy who tried to escape admission to the hospital and had to be wrestled into submission by security guards. I feel concerned when “Big Boy,” the tall young man who drives himself to his appointments, looks drawn and hollowed-eyed and even more when I hear a doctor lecturing him about his defeatist attitude. Relieved when I see him again, months later, looking much better.

Being a cancer mom doesn’t mean that you have a child who is a gifted athlete, who makes age group cuts, who has beautiful strokes, or who is still swimming hard at the end of practice when everyone else is slacking off. It doesn’t mean sustaining yourself during long meets with the hope that your child will beat her best time or with the dread that she might actually make finals and have to come back in the evening. It doesn’t mean becoming over-invested in the activity not only because you enjoy your child’s success but also because it is easier to endure six hours of swim meet when you are tracking her times against meaningful markers.

Being a cancer mom means, of course, that your child has cancer. It means that all the fears you ever had and laughed away were warranted. Your absolute worst fear—or maybe even something much worse than you ever dared to fear—has come true.

Being a cancer mom means having ripped from you the confidence with which you faced the world, the certainty that things would work out. And along with it, your ability to tell your child that everything will be okay. It means being left with a heightened sense of vigilance, an understanding that something terrible could happen at any moment.

Being a cancer mom means always having your bags packed, in case you have to go to the ER and then get admitted. Lecturing an alarmist resident, telling him that, for hematology/oncology parents, low hemoglobin is really not “of concern:” it just means she needs a transfusion.

Being a cancer mom means losing yourself in hospital time. It means spending six or sometimes eight hours at the clinic, sitting and sitting as the poison that is to save your child’s life drips into her body. Finding a fondness for the characters in the Disney shows you before disdained. Losing your ability to think, as your mind becomes filled with blood counts, chemotherapy drugs, and countless medications for side effects. And mostly with worry.

Being a cancer mom also means gently bathing your child’s head, gathering the clumps of loosened hair, as one cares for a baby, with love and as a matter of course.

And it means feeling close to and dependent on people you wish you had never had to know and whom you can’t wait to never have to see again.

I do not want to be a gung-ho cancer mom. A mom who takes up the fight, raises funds for research, organizes a team for the fun run for the local clinic. And I pray that I will never be the ultimate cancer mom, who, after the death of her child, creates and dedicates herself to an organization to help find a cure or to make easier the lives of children and their parents going through what her family went through. In her child’s name. To honor her child’s life. To keep her child’s spirit alive.

But I am a cancer mom. And being a cancer mom means being part of the magic of The Hole in the Wall Gang Camp. It means wearing a dog tag from camp around your neck as a reminder that joy can happen, along with an orange “positivity” bracelet for hope. Appreciating how beautiful your child looks bald and seeing what a great model she would make as she poses for Flashes of Hope and with a monster truck for a fundraising calendar. Being a cancer mom doesn’t mean a shining moment of pride when she earns an all-around gold medal at the state meet or drops 8 seconds in the 100 Fly. It means a long-term appreciation for how she is handling a horrific experience with as much courage and grace as possible. A gradual realization that she has become more much bold and assertive than before. It means gaining the sense that so much of what mattered so deeply before is not at all what really matters. And it means the unfortunate sense that the cancer team is not one you can just quit when you have had enough. I am going to be a cancer mom for a long, long time. God willing.

Author’s Note: This essay was written in October 2013, after my daughter had begun the maintenance phase of a treatment that lasted 857 days. She completed treatment this spring and is doing well. I now find myself engaging more with other cancer parents than I thought I would and better understand the incentive to create community (but am grateful not to have needed it). I still follow stories I would be better off not knowing and sometimes google, fruitlessly, for information that would bring me certainty about my child’s future.

Kristen Brookes, a teacher and writer, lives in New England with her husband, daughter, and puppy. In a previous existence, she published articles in early modern studies, on topics such as race and tobacco and gender, sexuality, and colonization. Kristen is currently working on a collection of essays about her experiences as a “cancer mom,” an identity from which she wishes to flee.

Photo credit: Team Photo.

There When I Need You

Posted on June 16, 2015 by CNF • Posted in Articles Page, From The Archives, General • Tagged alcoholism, cancer, family, loss, motherhood, mothering, mothers, nervous breakdown, Stephanie Farrell • Leave a comment

By Stephanie Farrell

My mom often joked that the second baby should be called “the nervous breakdown baby.” I’d have found this funnier if I hadn’t been her second baby and if she hadn’t subsequently had a nervous breakdown. Now, with two children of my own, my stepfather reminded me that I am the same age she was when she was hospitalized. It was a gentle nudge, his way of telling me not to take on too much, but it made me feel like my biology has faulty wiring. Now on those days when I feel isolated or exhausted, I picture an old kitchen timer, ticking louder and faster right before the buzzer goes off. Time’s up—this is all you can take, no more.

In the years before her breakdown, Mom put on a fabulous act. She was Supermom. She set up a preschool in our garage and taught all the neighborhood kids. She taught us how to bake cookies, make collages, and collect bugs. She would make up stories about Mrs. Carter, a little old woman in tennis shoes who secretly rode a motorcycle. Much like the fictional character Mrs. Pollifax, created by Dorothy Gilman more than a decade later, Mrs. Carter was often hired by the CIA for international adventures. Mrs. Carter, much like my mom, led a double life.

Every morning Mom would say that she needed to put on her face. She meant her make-up; she’d rarely stray out of the house without it. But my mom put on a face all the time, a happy face that belied what lurked inside. She wore it to Garden Club and League of Women Voters and to Little League games and to my Brownie meetings. She wore it with her neighbors. She wore it with most of her friends. Underneath the face, she was hurting. Despite her joke, I know that we didn’t cause her nervous breakdown (okay, I say that only after a few years of therapy myself), but we probably hastened its arrival.

My mom’s mom, who wore a capable-Mormon-mother-of-six face, became a closet alcoholic. Grandma was recovering from her own childhood; she’d had to raise her siblings in poverty when she was just a kid herself. At her best, she could make a mean lemon meringue pie while at the same time assisting my grandpa, a doctor, with his patient on her kitchen table. At her worst, she said horrible, not-to-be-repeated things to my mother. Since they weren’t to be repeated, my mom didn’t repeat them. She didn’t speak of them. She didn’t laugh at them. She just stuffed them down and put on her face and carried on.

I have learned a lot from my mom. One of the things I learned is that you can be in a great deal of despair and still get up and put cereal on the table and change a dirty diaper. You can take the kids to Monroe Falls every day in the summer, teach them to swim, and laugh at their antics even though you secretly long to die. You can sing silly songs to them, read stories, and comb their long hair, being gentle because it’s so tangled. And you can act like everything is okay and fool most of the people most of the time. But not your kids.

I knew my mom was sad. I knew it at an early age. It was my job in the family to cheer her up, keep her happy, and do what I could do so that on the rare occasions when my dad was home, everything was fine. If that meant keeping my sister quiet, I would distract her. If it meant bringing my dad slippers and his newspaper, I fetched. I was my mom’s cleaning helper. I also became the entertainer, remembering ?funny stories to share? with her.

I also know that each ?of us has a breaking?point. When my mother ?reached hers, she finally got ?help. Though kids can add? pressure to a stressful life,? they are also a tether to ?remain on this side of the? grass. She felt the tug of us even ?when she was in a locked ward making brown-glazed piggybanks and pink crocheted slippers. When she got out, her face wasn’t so firmly on. She would allow cracks to be seen. She would say she was sad. She told us that for years she had tried to be perfect and that it was a mistake—we are not perfect.

My mother taught me a profound lesson. You are allowed to get help, but don’t wait until you desperately need it. I am determined not to follow her lead into the hospital, to sedatives and group therapy with permanent locked-ward residents. So in my own recovery process, I have learned to shed more of the face, to be out there with my feelings. I also find tremendous comfort in my faith. As a Christian, I easily acknowledge my imperfections and rely on God’s grace. I also like the promise that God is not going to give us more than we can handle. (To which my brother likes to quip, “God must sure think a lot of us.”)

When I became a mom five years ago, my mom drove out from her home in Ohio to South Jersey as soon as I went into labor. Our son, Daniel, was born while she was en route. She stopped by the hospital at the tail end of her drive. I looked at his tiny little feet next to my big feet and then over at my mom. “You’ve known me since my feet were this small,” I told her. I was filled with love; I got it for the very first time how intensely a mother can love a child, and I realized that this is how much she cared for me.

She was full of nervous energy that visit and my house seemed to be her best outlet. She scrubbed the bathtub, made the laundry room sink sparkle, polished the wood floors, and swept the driveway. I think she rearranged my cupboards, too. I haven’t been able to find my small bowls since.

Three years later she flew out again, this time not to celebrate a birth but to join me in grieving. I had had two miscarriages in a row. The first one knocked me off my feet. I was at fourteen weeks and the doctor couldn’t find a heartbeat, so he ordered an ultrasound. The screen showed an empty womb, the baby almost disintegrated. I was heavy with grief and sobbed for days like I had never cried before. But the doctor told me that what had happened was very rare: I could have done nothing to prevent it, and there was just a one percent chance of its happening again. Five months later, I learned something about percentages. I had “vu jÃ dé”— it’s like “déjÃ vu” except it has all happened to you before, just a little differently.

The second time, I was eleven weeks, at a regular check-up, and again no heartbeat. I stood in a doorway at the doctor’s office, just where I’d stood before, while they called to order the ultrasound. If it happens again, I told him, I’m going to fall apart. Someone is going to have to come and pick up the pieces. This time there was a fully formed baby, but it was no longer alive. My mom came to pick up the pieces.

She was again there for me, but not in the way I expected. Daniel was then two and a half and ready to be potty-trained, she declared. I said, Knock yourself out. And I meant it. Potty-training was the last thing in the world I cared about. Really, I didn’t care about anything, not eating, not sleeping, not anything. It was the first time in my life when I couldn’t make any kind of decision. And there my mom was having this incredible bonding experience with my son, the trips to the bathroom a special adventure for the two of them. After three days, the job was finished. Daniel was dry through naps and at night. I am still amazed at this, but at the time, I wanted to yell, I am the one who needs help. Every now and then she would show up on the screened-in porch where I planted myself early in the morning and stayed parked all day. She’d let me cry for a minute or two and then would leave again. After a week, I started to make meals. “I put those dishes in the sideboard, not there,” I told her. “Hey, we recycle!” I’d say, pulling a two-liter bottle out of the trash can. She smiled at my irritation, happy to see that I was beginning to engage in life.

Many months later my husband and I somehow summoned the desire to try again, and this time everything went fine. Our daughter, Emily, arrived with lots of hair and bright blue eyes. My mom was thrilled. She loaded her car down in pink packages for her first granddaughter and made the drive out. Yet again, I sat on the porch, this time content to nurse and read and drink lemonade. Mom’s nervous energy returned and this time she attacked my yard. She weeded, mulched, and planted. Perennials and rhododendrons appeared along our side fence, orange hibiscus along the back fence, impatiens and lilies in front of the house.

Despite previous experience, I expected her to take care of my postpartum needs: meals, diaper changes, etc. But again, she just gave me space, this time to bond with my baby on the porch, every day transforming the view of the yard from its state of neglect. Now I could look up from my book and enjoy the view rather than think, “Oh, I should really take care of that” before turning back to my novel. (I rarely let anything get in the way of a good book, especially not housework or weeding.)

On her last morning with us she gave me a pedicure on the porch, gently massaging my still-swollen ankles. With cotton balls between my toes, I cried as I watched her car pull out of my driveway. How could I take care of both of these kids and this house and do all that I am supposed to do? I was overwhelmed, mostly by sleep deprivation and by the feeling that my son had become possessed. Why else would he choose this time to pee in our closets and write on the walls?

It was a crisp fall morning a few months later when my mom called to tell me that she had cancer. The Big C. Not cancer—no one in our family has cancer, I thought. Emotional breakdowns, depression, drunk and disorderly conduct, this we understand. Nothing some rehab or Prozac couldn’t cure. Cancer is a whole different planet, one our family has never visited. My mom had always joked that she didn’t have a moderate bone in her body; she went overboard in whatever it was. Well, this time was no different. It wasn’t a little lump to be removed. It was Stage IV uterine cancer.

It was my turn to pack up the car and drive to her. I made four trips over the next four months, a total of forty hours in the car with my two kids in tow. We drove through thunderstorms, hail storms, a blizzard, and fog. I wondered whether I really knew my mom. I had this desperate need to capture her. I was panicked with a deep nagging fear that her good days were over, that I was going to watch as she slid into a period of illness that she wouldn’t recover from, that she would die. As I was driving I realized that even though she was not there for me the way I thought I needed her to be, she was there for me.

When I got to Ohio, I embraced the opportunity to mother her, for she had taught me how to do it. When she was determinedly positive, I smiled with her even though I didn’t share her optimism. I drove her to chemotherapy in Cleveland, twice through blizzards. We stopped for coffee and bagels on the way, fortifying ourselves. We had always talked about making a quilt together. With no time to waste, we worked on a quilt wall-hanging while we watched the I.V. drip, drip, drip into the hole in her chest for six hours.

She didn’t look like a cancer patient at first. “I always wanted to be a blonde,” she said when she first showed me the wig she’d picked out. She had a head shaving party, inviting her friends to a day at the salon. Later, when her head got itchy at a chemo session, she shed the wig with a smile. “Guess I am having a no-hair day,” she said. Her starkly bald head, more than anything else, made the cancer real.

During the winter of her cancer, we cried together only once. I caught her on the Monday after chemo, when the effects were worst. She was honest about how terrible she felt. I blurted out how much I hated this, hated all of it, that I still needed her and that she absolutely was not allowed to die yet. Not yet, I am not ready. I don’t think I will ever be ready. But maybe when you’re in your nineties and I’m in my sixties, we can talk about it.

We cried together on the phone, my handset getting all wet. I was in the kitchen, leaning over my counter, looking out at a gray winter day. She was in her king-sized bed, confined to it for the next few days by the chemo that had wiped her out. Normally, she was distracted from the pain by the birds who visited her wooden balcony. But that day we didn’t have to talk about the birds and I didn’t have to tell her funny stories about my kids that I had saved up or about how happy I was to have organized my linen closet. I could just say, it stinks. The whole thing. Winter, living far apart, being positive, feeling sick, cancer, death.

Months later, when she had made it through chemo, the strongest stuff they can give you, the kill-ya-to-cure- ya strength, she said, “Just thank God that He has cured me of cancer.” But here’s the problem: you never really know if you are cured from cancer. When you’re on the toxic stuff, nothing is growing. So after she was done with chemo, we were in wait-and-see mode. Her face was back on, adamantly positive. I was a little kid again, knowing that everything was not all right but not allowed to talk about it.

I really wanted to call my mom this morning. There’s a terrible time in the morning when I linger between sleep and alertness—it can be a good fifteen minutes before I remember that she is dead. Our winter of cancer was followed by a spring of false hope. Then on my daughter’s first birthday, right before we cut the cake, she called to tell me that she was in the hospital. The cancer was back and she was terminal.

Our last month together was surreal. It was as if every morning she walked toward her grave, eyes wide open, but upon getting there, she found herself still standing. No? Not today? she’d ask politely. Well, okay, then. There was no more pretending. During that month, she talked about her hopes for us, and she shared how painful it was when her mom died. She gave me tips on finding mom-substitutes.

The week before she died, my mom checked into the presidential suite at the spa. It was there that I saw her for the last time. She treated me and her two sisters to pedicures and manicures, facials and massages. The next day I brought the kids there for a swim in the pool. When we were done, we said goodbye, and she and my aunts climbed into the hot tub. I tried to do our funny goodbye schtick—you say goodbye, walk away, then come back and say goodbye again. But she had already turned after my first goodbye; she was laughing with her sisters and didn’t hear me. I stood there in the hallway, holding my kids’ hands, looking at her. It was as if her trial with cancer had crystallized her, like a fire burning away all but the core. What endured was her strong, joyful spirit, determined to live a full life to the very end. I left, knowing I had just seen my mom for the last time, but I smiled at the kids. In the car, I put on their favorite Sesame Street tape and cranked up the volume so they wouldn’t hear me weeping.

In some way that I can’t fully put my finger on, it feels significant that my mom died just after my daughter was born. When I talked to my ob-gyn about my own risks for cancer—and told him, wasn’t it crazy, but I might want to have another child—he assured me that it wasn’t. The alpha and the omega, he said. The alpha and the omega.

Author’s Note: Since writing this essay, my father’s been physically and mentally ill and I’ve had two more miscarriages. What are you doing to take care of yourself? my mom would ask. I’d tell her that when I can find the words, I pray or write. When the words won’t come, I quilt. I just finished a quilt for my daughter Emily (now two), that is made from her outgrown sleepers and my mom’s flannel nightgowns. It felt like a tangible way to recognize my role in connecting these two generations.

Stephanie Farrell lives in Vineland, New Jersey, with her husband, Peter, and their two children. She does freelance work for her regional newspaper. This was her first essay published in a magazine.

Brain, Child (Winter 2005)

Wings

Posted on March 16, 2015 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged cancer, child, children, daughter, Elizabeth Knapp, fairies, illness, mother and daughter, sisters, special needs • Leave a comment

By Elizabeth Knapp

This is a story about the one who was brushed aside, the cancer child’s sister…

Four years ago on Valentine’s Day, my four-month-old daughter Molly was diagnosed with infant leukemia.

Four years ago on Valentine’s Day, my older daughter, then four years old, came home from preschool with her first bag of Valentine’s Day cards, brimming with happiness. She kicked off her boots, shrugged out of her puffy winter coat and before I could remind her to hang it up she spilled her many, lovely valentine cards out onto the hardwood floor, rifling through them to show me certain ones.

Then she noticed that her aunt and cousins were there. She noticed her baby sister was sleeping, her head lolling on my shoulder, instead of watching her with wide-awake eyes. She noticed that I wasn’t smiling.

“What’s wrong, Mommy? Look at this one! It’s made from a doily and it has my name on it! And why are my cousins here?” She fired questions at me.

I passed Molly to my sister-in-law and knelt down to be at her level, my heart breaking as I stuffed the cards back into their paper bag without looking at them. “Something’s wrong with Molly. She’s very sick and Daddy and I need to take her to the hospital. We might be gone all night. But you get to have a sleepover with your cousins tonight! Won’t that be fun? You can bring your rolling bag.”

She looked at me dubiously. “Can I at least show you my valentines before you go?”

Tears welled up, threatened to drip down my cheeks. I pushed them away and told her that I couldn’t look at them right now because Daddy and I had to leave right away, but I knew her cousins would be thrilled to sort through them with her. That I would look at them as soon as I could.

We went upstairs together to pack pajamas and a change of clothes. Her special stuffed lamb, Little Lamby, was to ride in the bag with the valentines. We packed her toothbrush and no-pull hairbrush. I took Molly back into my arms, kissed my reluctant and teary older daughter goodbye and watched from the window as she trudged out to the car with her cousins.

This could be a story about my baby who had cancer, but it’s not. There are other stories about that, stories about her scars, about how she almost died twice and then didn’t. Stories still to be written about the days, weeks and months during which we vacillated between fear and hope, dread and desire, boredom and anxiety. Stories that are so filled with horror I wish they were not mine to tell. I wish no one ever had to tell them.

This is a story about the one who was brushed aside, the cancer child’s sister, the one who went to preschool one sunny Valentine’s Day filled with the promise of a party and came home to have all her beautiful cards stuffed back into their drab paper bag. At least it had her name on it, looped in fancy letters: Amelia.

Amelia: my first born, my copper-haired firecracker. Amelia, who threw me into motherhood, introducing me to depths of patience, rage, love and joy I never knew existed. Amelia, who cried for ten months straight until she could crawl. Then, finally able to explore her world on her own terms, stopped crying and began to speak.

At the time Molly was diagnosed with cancer, Amelia was obsessed with fairies. She begged me to read books about fairies again and again and again. She drew fairies and wanted me to cut them out, demanded I talk for them so she could ask them questions. After being in the hospital with Molly for two days and two nights, I knew I had to go home to Amelia. But how do you explain leukemia to a four-year-old? How do you tell your daughter that her sister is just about as ill as a person can get and still be alive?

I made up a story about the fairies. Once upon a time, I told Amelia, there was a family of fairies: a mom, a dad and two sister fairies. One day, the baby sister fairy became very sick. Something happened and her body couldn’t make healthy blood anymore, and all fairies know that if a fairy can’t make healthy blood she gets very, very ill. The baby fairy had to go to the fairy hospital. The doctors at the hospital had to give her special medicine that seemed to make her even sicker but actually, they hoped, would make her better. It was red, and they had to put it directly into her blood.

The baby fairy sister, stuck in the hospital with all this medicine that was supposed to make her better but made her body feel terrible, lay around all day with her wings drooping. The mom and dad fairy were always fluttering over to the hospital, worried about the drooping wings and also worried that their big girl fairy would think they didn’t love her anymore when, in fact, they loved her so much their hearts ached every time they had to leave her. It turned out that the only time the baby fairy’s wings didn’t droop was when her sister fairy was visiting. So it was very, very important that the big sister visit her as much as possible, because all fairies know that you can’t get better if you have constantly drooping wings.

I had to stop here because I was crying too hard to continue.

The weeks that followed developed into a pattern. My husband stayed at the hospital Thursday to Sunday, and I was there Sunday to Thursday. Here is what Amelia remembers about that time. When I was home, we slept together at night, she and I. I had to wake in the middle of the night because, as a breastfeeding mother away from her baby, I needed to pump milk for Molly. Amelia, so in tune with my rhythms, would wake with me and follow me downstairs, the steady whoosh-pop sound of the pump lulling her back to sleep, slumped next to me on the couch.

On switch days, when John and I swapped duties, Amelia would usually come to the hospital, too. Molly’s eyes would light up when her older sister came into the room. Amelia learned quickly to be mindful of the IV lines. She got to know the nurses and the child life specialists, where the art supplies were kept and that the patient kitchen was always stocked with popsicles and ice cream. Sometimes the two of us would explore the hospital, tunneling through dark hallways and popping out in unexpected places. One cloudy spring day, we found our way a secret garden surrounded by towering hospital walls. On warm days, when Molly was well enough to leave her room, we took her with us, her IV pole bumping over the walkway.

After Molly came home, Amelia learned to live with uncertainty. Any fever in a cancer child is cause for a trip to the emergency room. Which also means trips to the emergency room for the sibling. Bringing Amelia with us meant that we loved her just as much as Molly, that she was an integral part of our family, too important to be left behind. Trips to the ER were an adventure for her and she was a distraction for us. As a cancer child, Molly had top priority in the ER but once we were in a room, there was lots of waiting and wondering and sitting around. Amelia’s presence cheered up Molly and made it impossible for us to sink into our own gray worlds of worry and fear.

Once, Amelia received a trophy from an organization that supports siblings of kids with cancer. It still sits in the center of her bureau. “AMELIA,” it reads, “SUPER SIB TO A CANCER KID.” And even now, four years later, when asked what makes her special she replies, “My sister had cancer.”

I have to believe that my thoughtful, serious firstborn baby has learned things—about compassion, about rolling with the punches, about finding your place when the world is not about you—that she may not have learned had her sister not had cancer. She played with kids in the playrooms with smooth, shiny heads like her sister’s, kids in wheelchairs whose cheeks were swollen from long-term steroid use, kids whose IV poles clattered after them wherever they went.

This story began with the cancer child because when you have a child with cancer their sibling, heartbreakingly, comes second. Their valentines will sit unappreciated in their bag. Their own plans for the day will be swept aside when their sister wakes in the night with a fever.

The year Molly had cancer, I recycled Amelia’s crumpled, forgotten valentine bag without ever looking at the cards inside. This year, four years later, Molly went to her own Valentine’s Day party and came home with her own paper bag, a fancy “Molly” scrawled across the top. She turned her bag upside down and the cards fluttered out on the floor. My two girls sat together, admiring the cards, their heads touching, blond hair mingling with orange. Watching them, I could see their wings humming happily behind them.

Author’s note: Molly is almost three years off treatment and remains cancer-free. She delights in provoking her big sister in a myriad of ways. Amelia is a curious and thriving second grader who, despite said provoking, continues to champion her little sister in every way.

Elizabeth Knapp lives with her family in a small town in Vermont. When not enjoying the antics of her two young daughters, she can be found writing, gardening and wandering the woods and fields around her house.

Scars

Posted on July 28, 2014 by CNF • Posted in Highlights • Tagged cancer, childhood cancer, Elizabeth Knapp, mothering, scars • Leave a comment

By Elizabeth Knapp

Molly has five scars. Scars on her neck, scars on her chest. A dimple in her lower back from a bone marrow aspiration. A small hole in her belly from which a gastric tube used to emerge. Her torso is a map of her babyhood.

The first time Molly had surgery was the night she was diagnosed with infant acute lymphoblastic leukemia. It was on Valentine’s Day, the day before she turned four months old. My husband and I had been in the ER with Molly for scarcely an hour when her future oncologist entered. He told us that the results of her blood work, drawn earlier in the day at a different hospital, had arrived before she did. He told us that we might want to sit down. John did; I remained standing and stared at him as he said the startling and fearsome words, “Your baby has cancer.” The diagnosis was given and suddenly Molly’s life flew out of our control. A flock of nurses in brightly colored scrubs rolled her away on a small bed to a procedure room somewhere in the bowels of the hospital. My husband and I were led to a dark, deserted waiting room. We were shocked, weary, frightened, confused. I pumped my leaky breasts, watched as the milk filled up the small bottles in tiny streams. We called family. We held hands, silently. We waited. Finally the bed rolled by, this time with only two nurses steering it. Dr. S., the surgeon, peeled off from the procession and sat down with us.

“I’ve placed a PICC line in Molly’s leg and a catheter in her neck.” He rubbed his eyes with his large hands. It was around midnight and he had been working on her for two hours. “The procedure went well. She probably will stay asleep for a while.”

“A PICC line?” I asked.

“A catheter in her neck?” John said.

We could only repeat what he told us, in question form.

I got a good look at my baby girl in the Pediatric Intensive Care Unit. She had so many wires and tubes attached to her, I couldn’t figure out how to hold her. Three electrodes stuck to her tiny chest, an IV was hooked up to the line in her leg, a blood pressure cuff hugged her other leg and there were two enormous tubes coming out of her neck.

A large machine was steered into the room, followed by a doctor in a sensible skirt. “Molly’s white blood cell counts are so high we can’t start chemotherapy yet. Her body wouldn’t be able to process the large amount of dead and dying cells.” I fixed my wide-eyed stare on he. “This machine will hook up to the catheter in her jugular vein. We need to take the blood out of her body and spin it to remove as many excess white blood cells as we can before treatment can start. This is called leukopheresis. We need your signature here, and here.” She handed John some paperwork. “It will be very loud, and will take a couple of hours. We may have to do it twice, depending on how clean her blood gets the first time. You’re welcome to stay but you could also try to get some rest in another room.”

We stayed. We sat on a cot, bleary eyed, exhausted, watching the machine do its work. Molly’s blood flowed through the clear tubes that snaked around the machine, then returned to her body. We later found out that she was the youngest patient at this hospital to survive this treatment.

The next morning, the tubes in her neck were removed. And there was her first scar.

***

My mother has a scar smeared across her chest. When she was four years old she climbed up on the kitchen counter and pulled the pot of boiling water over her as she fell. Afterwards, instead of healing, the wound became infected and she spent three months in the hospital while she recovered. She doesn’t remember the hospital stay, but I bet you anything her mother remembered it clear as glass for the rest of her life.

As a child, I never questioned her scar. It was just another part of my beautiful mother, like her fine blond hair or her bottle top glasses or her strong, narrow shoulders. She always covered up, wearing high-chested bathing suits and crew neck shirts.

***

The next time Molly had anesthesia I was wholly unprepared. She had been receiving chemotherapy for about four weeks and had been inpatient the whole time. John and I took turns staying with her at the hospital so that one of us was always with her and one of us was with our older daughter. Molly was scheduled for a lumbar puncture, which in later months became routine. She was five months old, on steroids, and not allowed to eat anything including breast milk. She was hungry and in a rage. Neither one of us had slept well the night before. We had been quarantined in her hospital room because her low blood counts made her extremely susceptible to infection. By the time the orderly came with a wheelchair to bring us to the operating room, I was crying, still in my pajamas, and my heavy breasts were leaking and sore. No one thought to tell me that I’d be waiting in the waiting room with all the regular people who were there for outpatient procedures, or their loved ones with normal, daytime clothes on.

After I lay my sleeping baby on the stretcher, I went into the bathroom, slipped my bra on, washed the tear streaks from my cheeks, tried to smooth my greasy, bed-tousled hair. Blotted my armpits with a damp paper towel. Then I shuffled back to the waiting room in my blue slippers trying not to cry again, trying to ignore the polite non-stares of the others in the room.

I was unable to think of anything except the way Molly’s body felt as the anesthesia went to work. She was suddenly limp and heavy and utterly still. Her eyes rolled up and closed. She would have seemed dead had I not felt her hummingbird heartbeat or her warm breath on my nose as I bent down to kiss her goodbye.

Later, in the Post Anesthesia Care Unit, she nursed hungrily and angrily, sucking milk from deep within my breasts until they were soft. I had been instructed to hold her sideways and not prop her up for a half hour, so the chemotherapy could settle in her spine. I imagined the long needle piercing her spinal cord, both delivering poison and sucking precious drops of spinal fluid to test for leukemia in her central nervous system.

***

There were lumbar punctures every six weeks and so much to be angry about, but I had nowhere to direct the bitterness. No one was responsible for Molly’s illness. I had to be happy that her body was skeletal, that her blood was stripped, that sores would erupt in her mouth and down her digestive tract all the way to her bony bottom, because if she was not pumped full of all these toxic chemicals, she would die.

***

Almost a year into treatment, Molly stopped eating. She was still nursing, but still losing weight. She weighed fourteen pounds. I began writing down everything she ate and obsessing over calories. A typical day would include a tablespoon of refried beans with butter, two bites of avocado and a few Annie’s Cheddar Bunnies. Usually she would throw it all up. I stopped hoping she would gain weight; at her weekly clinic visit I would feel happy if she hadn’t lost any. Eventually she got down to twelve pounds. The same size as a four-month-old baby. She was seventeen months old.

A team of doctors stuffed themselves into Molly’s glass-walled clinic room and recommended that she have a gastric feeding tube placed in her belly. It was a difficult decision to make, as it meant another surgery with small but serious risks. We could have opted for a nasal-gastric tube, which is a tube that is inserted through the nose, down the throat and into the stomach. But we thought this would interfere with her eating altogether.

The two gastroenterologists worked as a team to carefully punch a hole through Molly’s skin into her stomach. A fourteen-inch tube was anchored in her belly and coiled out of the hole like a worm. We had to tape the coil to her soft skin so that it didn’t pull. All this time, Molly was clearly in pain and not afraid to let us know it. She was inconsolable.

After x-rays and CT scans, a hole in her colon was discovered. Dr. S. opened her up yet again and sewed the hole shut with two layers of stiches. The doctor was a big man with enormous hands. He said the hole was about as big as the tip of his pinky. Another scar was slashed onto her body, vertical, two inches long, an avoidable scar, a scar about which I never stop being angry.

***

Now, at three years old, she looks down at her pockmarked chest and belly and doesn’t think twice about it. Sometimes she pokes at the hole where her g-tube was, delighted with having “two bellybuttons.” What will it be like when she’s thirteen, and wants to wear a bikini? Or when she’s casually changing out of gym clothes in the locker room, will the other girls whisper and stare? Will she have lovers who trail their fingers over the delicate lines on her chest, wonder in amazement and awe at her trauma? Sometimes her sister tells her the story of her scars, “Here’s where your tubie was, and this is where your port was…”

Maybe Molly’s own children will absentmindedly trace the scars, fluttering from line to line with their butterfly fingers. Maybe one of her babies will decide that the vertical scar near her bellybutton is just the right ridge to stroke while nursing. Maybe her children will see the scars as just another part of their beautiful mother.

Elizabeth Knapp lives in a small town in central Vermont. When not enjoying the antics of her two young girls, she can be found writing, gardening or wandering in the woods. This is her first published piece.

Ava, This One’s For You

Posted on July 15, 2014 by CNF • Posted in Blog, Featured Blog Posts • Tagged brain stem tumors, cancer, Christopher's Haven, Emily Cappo, parenting, pediatric cancer • 2 Comments

By Emily Cappo

Moments after we arrived at our temporary apartment at Christopher’s Haven, a little girl with a blonde bob poked her head out of the door to see who was moving in. Seconds later, she bopped down the hall to meet us and seconds after that, she asked my son if he wanted to play with her in the communal playroom. Her mother immediately apologized for her assertiveness, explaining that they had been the only family living on the hallway for the past two weeks. Her daughter was starved for interaction with another kid.

Playing hard to get, my son declined and said, “maybe later.” He didn’t dare tell her that the real reason he didn’t want to play was because his uncle was already inside the apartment hooking up the used XBox machine that he managed to purchase at a bargain price. My son and I both knew that the XBox was going to be a key component to saving our sanity over the next six weeks living away from the usual comforts of home.

As we quickly discovered, the girl who lived next door to us on the hallway was named Ava [name changed to protect identity]. I knew Ava was there to receive proton radiation just like my son because that was why families stayed at Christopher’s Haven, an organization that provided housing to out-of-town families receiving this treatment at Massachusetts General Hospital. I didn’t know what her diagnosis was, but to me she looked healthy, strong, and completely un-phased by her illness. And she had more energy than five girls combined. I guessed she was about the same age as my son, around 8 or 9. I also assumed that she was in the early stages of treatment or perhaps she was wearing a wig or else maybe she did not have to endure as extensive a treatment regimen as my son.

I was wrong.

During our first few days of living there, we’d bump into Ava in the hallway or at treatment and she was always happy and ready to engage with whomever was around. A few days before her treatment ended, her younger sister arrived. Their sisterly bond was palpable and sweet as they went everywhere hand in hand.

One day, I bumped into Ava’s mom in the laundry room of the building. On our way up on the elevator, I asked her if the weeks they had been there seemed to go fast or slow. I knew their treatment was coming to an end, while ours had just begun. Instead of answering my question, she replied a bit cryptically with, “well, we’re not having a good day today.” Ava’s mom looked tired and emotionally spent. I did not press any further, and wished her a good afternoon.

I was somewhat surprised by her reply, because I had seen Ava earlier and she was her usual bouncy self, bounding up and down the hallway with her sister. I couldn’t or maybe I didn’t want to understand why they had a bad day.

In the waiting room at the treatment center the next day, Ava’s father sat down to chat with me. Usually, families didn’t discuss specifics of their child’s illness. But Ava’s dad was different. He point blank asked me about my son’s situation. I felt awkward, but thought it would be rude if I didn’t ask in return about Ava’s illness.

“Brain stem,” he murmured.

I nodded, as if I knew what he was talking about. He told me she wasn’t able to have surgery and that she had been initially diagnosed when she was three.

I couldn’t believe that spunky Ava had been battling with this for at least five years.

When I got home later, I decided to Google “brain stem tumors” and I did not like what I read. Suddenly, I understood why Ava’s mother said they were having a bad day. And then I realized that although we were all living on the same floor for similar reasons, each child’s situation could be vastly different.

On Ava’s second to last day, she and her sister knocked on our apartment door. She asked if my son was home and if he wanted a rubber ball that lit up when you bounced it. The two girls were holding a box of balls and handing them out to kids on the hall.

“Sure, I bet he would,” I answered.

I invited the two girls in so they could hand the ball directly to my son. He thanked them, thought it was cool, bounced it a few times, and then went back to playing XBox.

I had this urge to hug Ava good-bye, but I restrained myself. I thanked the two girls for visiting and watched them skip out the door in their jeans and matching cowboy boots. We never saw Ava again because they left for their home in Minnesota while we were at our hospital appointment the next day.

However, I know I’ll always remember Ava, because she was more than a little girl with a fighting spirit.

Ava was hope.

And perhaps that’s why even though I barely knew Ava, I felt an attachment to her as if she was a niece or a cousin. People always say the same thing when referring to children who fight serious illnesses: “Kids are resilient.” I completely agree.

And kids like Ava? Ava is exceptional.

Emily Cappo is a writer and blogger at Oh Boy Mom. (http://ohboymom.com) She is a regular contributor at Huffington Post and has also appeared in a Huff Post Live segment. She has recently completed a memoir, “Hope All Is Well” which chronicles mid-life loss, re-connection, and revelation.

Photo credit: istockphoto.com

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For Life

Posted on April 7, 2014 by CNF • Posted in Articles Page • Tagged cancer, death, grieving, losing a husband, loss, mothering, parenting, Sarah Kilch Gaffney, separation, wife • 22 Comments

By Sarah Kilch Gaffney

Sometimes it’s tentative and other times it’s brazen, but at some point people almost always ask if my husband and I got pregnant on purpose.

When I was twenty-five and my husband Steve was twenty-seven, he was diagnosed with a large brain tumor that we were told would ultimately be terminal. We could treat and hope for the best, but due to the tumor’s type and location, there would be no cure.

His doctors optimistically gave him five to ten years because he was so young and the tumor was slow-growing. As he recovered from his first brain surgery, we started talking about whether we wanted to be parents. We did, though we also recognized that it was an enormous responsibility to bring a child into this world knowing that Steve might die at any time, and knowing that he almost certainly would die while they were still young. It’s one thing to end up in that situation as a result of fate; it is entirely another to willingly choose that fate.

Steve and I had met five years earlier on a backcountry trail crew and had been married for just over three years. We had always talked about having kids someday (when we both had real jobs with benefits, were more financially stable, etc.) but before that time it had never been a pressing issue. We were young and felt like we had all the time in the world.

One night soon after his diagnosis, we huddled together in front of the wood stove and talked it through. We made our decision and never looked back. Less than two months later, I was pregnant with our daughter. We named her Zoe because it means “life” and we could think of no meaning more fitting for our child.

And so the questions started. Some people were certain she must have been an accident. Why on earth would we get pregnant, knowing Steve was going to die? Others felt similarly to us – it was the best and bravest thing we ever could have done given the situation.

Even after Zoe was born, I was a little quiet about our decision. I would tell people the truth, but I was not always terribly confident. I would watch people start to do the math in their heads and then realize she was born long after he was diagnosed. I could see the moment that the shock unintentionally spread across their faces, and the stunned looks became a predictable conversational theme.

Now, I simply tell people out-right, sometimes before they even get a chance to ask. We decided to have her after he got sick. She was not an accident. We wanted to be parents, wanted Steve to have the opportunity to be a father, wanted to live life with the same options as any other twenty-something couple. We also wanted to be hopeful, optimistic, and have something other than ourselves to live for.

It is an epic understatement to say that the last few years since Zoe’s arrival have been challenging. As I write this, she is about to turn three in all her purple-and-princess-loving, world-investigating, temper-tantrum-throwing glory, and Steve started hospice a couple of weeks ago. We had a blissful several months after her birth when there were no treatments, no bad scans, and where other than the faint trace of scar, we felt something like normal parents.

Shortly after Zoe’s four-month check-up, the first of many scans showed that Steve’s tumor was growing again. Since then, he has had another brain surgery, six weeks of brain radiation, three different chemotherapies, and a proton beam radiation therapy. Nothing has worked. The tumor progressed far faster than anyone could have predicted and the unanticipated severity of radiation side effects caused extensive long-term brain damage. At this point, it is unlikely that he will make it to five years post-diagnosis, the short end of his original prognosis.

All that said, we both agree that having Zoe is the best thing we have ever done with our lives. It’s a lot harder to fall apart and give up when you have a baby who needs you. It’s a lot easier to focus on the positive when you have someone in your life who needs to stomp in every visible puddle, who will sit for hours cutting paper into little tiny pieces, and who has no idea why you wouldn’t want her to draw on the television screen with a pen. There also seems to be nothing the folks in a cancer center love more than a babbling baby in the radiation wing or a tutu-and-glitter-bedecked toddler telling everyone how much she likes their pretty wheelchairs.

What I still don’t talk about much is our phantom second baby. Just before Steve’s second brain surgery and when Zoe was around 18 months old, we decided to try for another child. Though from the beginning Steve insisted I would meet someone else and marry again after he was gone, I didn’t want to think about having children with anyone else. I wanted to have another child with him, the love of my life. Steve and I each have a brother, and we both wanted Zoe to get to experience the love, challenge, and companionship of having a sibling.

What I never saw coming was how desperately I would want to have another child. After getting pregnant with Zoe so quickly, I also never anticipated that we would have any trouble conceiving – at the time it seemed like simply making the decision was the hardest part – a thought that is laughable now.

Almost as soon as we started trying for baby number two, we found out that Steve needed to start chemotherapy, a treatment route he was initially not a good candidate for. We went to bank his sperm before he started, only to be told that his counts were extremely low. We banked anyway and then made the difficult decision to try a “mini” IVF therapy. We utilized our tax return and some of our savings. Not our smartest financial decision, but one that felt absolutely necessary. We got to the last step and the eggs didn’t fertilize. We had to try, though, otherwise I would have regretted it for the rest of my life.

Down the road we were able to try a couple of times on the rare occasion that Steve got far enough out from a final chemo dose, but never more than a month or two at a time and never with success. All the while I was kicking myself for thinking we had so much time, for thinking we had the luxury to space our babies a couple years apart, for believing that, despite the odds, he was going to make it.

When I finally realized and accepted that we would never have another baby was when I truly admitted to myself that Steve was going to die. For a while, it hit me harder than his impending death itself. And the thought that I might, even for a moment, grieve the loss of a non-existent child more than the loss of my husband (and existent child’s father) riddled me with guilt. The double punch of knowing Steve was going to die on top of the possibility that I might never get the chance to be a mother again took the breath from my chest. My heart was broken, and if it weren’t for Zoe, I don’t know if I would have been able to set my grief aside enough to even function.

When Steve started hospice care, I finally started selling all of the baby stuff. I had held onto everything, even every last little onesie and bib, a physical manifestation of my hope tucked away in grey bins. I made a future grandma extremely happy by selling her almost all of our gear for a fraction of the price. It was devastating to let go, but relieving at the same time. I still can’t bring myself to start looking through the baby clothes, but I know someday I’ll make an expectant mother very happy with those.

As our days together as a family grow shorter, we’re trying to hold onto them as best we can. We take lots of pictures. We put pillows between the hospital bed and our bed so that we can still snuggle as a family. We let Zoe help as much as she can.

In the months before she was born, I started writing letters to Zoe and I continue to this day. Hopefully someday she will read them and learn more about her father and I, and about our love for her and each other. Hopefully someday they will help her understand this path we chose.

Losing her father will affect Zoe for the rest of her life, but I can also see how much his illness has already shaped her in a positive way. There are moments when her intuition into his struggles stops me in my tracks, and I cannot fathom what it would be like to face the future without her by my side.

Author’s Note: Steven Gaffney passed away on March 22, 2014 after a 4 1/2 year battle with brain cancer. He was 31 years old. The following day, this piece was accepted for publication.

Sarah Kilch Gaffney lives in rural Maine with her daughter.

Complicated Grief: The Death of My Granddaughter

Posted on March 13, 2014 by CNF • Posted in Blog, Featured Blog Posts • Tagged Adele Gould, cancer, children and childhood, emotions, grandchildren, grandmother, loss • 14 Comments

By Adele Gould

“Granny!” my granddaughter would shriek, as she leaped into what she trustingly assumed would be my waiting embrace. Her eyes would shine with joy as she anticipated playtime, Granny-style. We would collapse on the floor, surrounded by dolls and other such girlish accoutrements. Sometimes I got to be the mommy and she the daddy, and when she grew tired of parenthood, she would dump her “children” in a box, and we’d dance to the rhythm of “Old McDonald” joined by her two brothers (one of whom was her twin).

Could there be any greater joy?

My beloved granddaughter, Tal Doron (affectionately called Tali) was just four years old when she died on August 26th 2007. A beautiful child, she exuded both childlike joy and astounding maturity throughout the ten months of her suffering. Diagnosed at age three with a rare form of brain cancer, her chances of survival were slim. Nevertheless—as she endured the unspeakable horrors of chemotherapy and stem cell transplantation—we convinced ourselves that she would beat the odds.

There was simply no other way to think.

Dazed and terrified, we sprang into action, aided by our wonderful community of friends. The family needed to eat. The parents needed clean clothes. And there were two bewildered little boys whose world had turned upside down and inside out. My heart broke as I dropped my 3-year-old grandson at preschool—without his twin for the first time in his life—and had to leave him screaming because I was needed at the hospital.

How could this possibly be happening to my family?

With heartwarming compassion, the oncologists devised an aggressive treatment regime, which required my granddaughter hospitalization for the better part of six months. Each day, after work, I alternated between helping out at the hospital, and spending time with the two little boys at home—until my body demanded an end to the frenetic pace as I found myself crying non-stop—and realized that it was time to take a leave of absence from work.

Tali’s hospital room was a veritable “Dora the Explorer” exhibit—Dora being her all-time favorite character. She had Dora books, videos, posters, stuffed animals, and stickers. She even played Dora games on the computer, which inspired her parents to set up Skype for her, so that she could interact with her brothers—and other family members—when they were unable to visit. And for me, it meant extra time with her, reading stories or singing together— activities we both loved.

The second phase of treatment—stem cell transplantation— carried with it a significant risk of infection due to her immune system being severely compromised by the treatment. Only Tali’s parents were allowed in—one at a time. But if one parent wasn’t well, I became the overnight alternate.

After sanitizing everything and anything in my possession, I would peek in—only to be greeted with an excited “Granny!”— sending my heart soaring to the moon. When she displayed typical 3-year-old silliness, my heart would dance with happiness, and when she was ready for sleep my heart would melt as she lay quietly, her huge dark eyes locked with mine as I sang to her.

Discharged home after the last cycle of treatment, she flourished, quickly gaining weight and looking healthy and robust. We dared to be cautiously optimistic, but soon after her fourth birthday came the catastrophic news of a relapse from which she would not recover.

It was unfathomable to imagine a world without this remarkable child. Words couldn’t possibly capture the depth of our grief.

Her devastated and devoted parents cared for her at home, where I too stayed day and night, terrified to leave. I remember singing “You Are My Sunshine” to her … until I reached “Please don’t take my sunshine away.” I could not go on.

She died two days later.

As I tried to articulate my sorrow, I found myself trying to brush aside my grief, since it was a mere drop in the vast ocean of suffocating agony into which her parents had been plunged. Of what importance could my grief be when the parents were facing a future forever darkened by this inconceivable loss?

Yet I could not ignore the screaming voice inside of me, and I had to keep reminding myself that loss cannot be measured … that my pain—although markedly different than that of Tali’s parents—was real.

Hoping to somehow quiet my sorrow, I began creating a collection of tangible and touchable remembrances. I put together photo albums and videos, surrounded myself with framed photographs, wrote in my journal and listened to “our” songs.

Gradually I began to notice that time was softening the edges of my grief, allowing me to remember moments my granddaughter and I had shared—how she would give me Dora stickers for “good behavior,” make up nonsense syllables or declare her love for me, arms outstretched to show me just how much. She loved “chicken muggets” and “pupcakes” and needed “mapkins” to clean her face. She offered adult-like encouragement when I exaggerated my struggle to master a task (“Good job, Granny!” or “I know you can do it Granny!”). And she was so proud of her long string of bravery beads, one for each painful procedure she endured.

Tali’s surviving twin is now ten years old. His parents, who never stop grieving for their little girl, must make his birthdays special for him, while simultaneously taking time to remember Tali. And so, each year the family gets together to carry out a ritual in which we write messages to Tali, paste them onto helium balloons and release the balloons to drift towards the sky. Tali’s twin never lets us see what he has written.

Adele Gould is a retired social worker. She has five children, three stepchildren and four grandchildren (previously five). Read more of her work on her blog adelegould.com.

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Beneath the Surface

Posted on February 10, 2014 by CNF • Posted in Articles Page, Featured Content • Tagged breast cancer, cancer, Francesca Kaplan Grossman, marriage, Mentall Illness, mother, mothering, pregnancy, survivor • Leave a comment

By Francesca Kaplan Grossman

The first time I found one, I had just downed a can of Arizona Iced Tea. Sweet, soft on the back of my throat, ice cold and only 99 cents, it seemed to me the best deal in drinks. I needed it. It was August in Massachusetts, and the air was hazy and heavy around my face. The can sweated, and so did my back, in fluid sheets, and I could feel my sports bra forming a damp “o” shape between my shoulder blades. Soccer practice for high school preseason had already begun, burning off the early morning hours with drills I loathed.

I pinched the cotton of my tee shirt between two fingers and pulled it away from my chest, fanning myself with the thin white fabric. Putting both hands in my shirt, I wriggled out of the bra. It felt like a stunning release to let my breasts slap against my chest as I peeled off the sticky spandex. And then, for some reason, I laid my palm directly over my right breast.

I’m still not sure how I found it. The tiny marble under my right nipple shouldn’t have been noticeable, even to me. But somehow my palm landed directly on it. I rubbed it around for a minute, kneading the circle under my skin, the flesh soft and pliable around it. Then, I pulled my hand away.

I was only sixteen and I had a plan. College, work, motherhood. But mostly motherhood. My mother was the example I could hold onto—a working mom home every day by 3:00 p.m. She was equally obsessed with her work and her children.

My mother worked hard, played hard, and knew us well. Nothing would get in the way of my being just like her when it was my turn.

“It’s nothing,” I said to myself, flipping over onto the hot, yellow lawn, the sharp grass scratching my face, the sun drying my salty neck.

The ground felt hard under me, and though I knew it wasn’t possible, I felt the little marble roll beneath me, like the princess and the pea. I imagined it green and tiny, like a pea, but also hard and impenetrable, like a marble. A marble pea.

“Nothing,” I said again.

I ignored the marble pea for six years, until it started to grow a cousin. This one I could not ignore because I was twenty-two and into truth telling. On my neck, right above where I would have had an Adam’s apple if women had Adam’s apples, was what looked like an Adam’s apple. It was oblong, as if I had swallowed a whole olive and it had never gone down.

“You have a thyroid nodule,” the endocrinologist said, looking at my chart and back at me.

“What does that mean?” I? asked frantically. I scanned?the room for the diplomas?that would tell me this man?was the best doctor ever, but all I could find was a? Best of New York Doctors mention from 2000 taped to the side of his desktop computer.

“It’s no big deal, Francesca,” he said, mispronouncing my name “Francessa.” Not a good sign….

“So what do we do about it?” I asked, my hand instinctively flying to my throat to finger the olive. It was solid under a thin layer of skin, and it moved around when I pushed it.

“Nothing, we’ll watch it.”

“Will it affect me getting pregnant one day?”

“Are you pregnant now?” he asked sharply.

“No.”

“Then don’t worry about it.”

But I wasn’t satisfied with this answer; I couldn’t bear to imagine my life without children. I remained quiet, nodding my respect for a doctor that I was sure must know much more about my body than I did.

So I watched it, in the mirror, in store windows, wherever I could get a glimpse. And it continued to grow.

My husband, Nick, is six foot two. I am five foot nothing, which makes for funny family pictures and a tough time kissing. When he’s on his knees, we’re the same height. There’s a picture of us on our wedding day with my head completely pushed back like a Pez dispenser as he leans down over a foot. At that moment, the olive had grown into a walnut, jutting out of my otherwise flat neck in what should have been the best picture of my life.

“Don’t you think we should take it out?” I had practiced this line a thousand times in the bathroom, at home, and then, right there, outside the doctor’s waiting room. It was the first thing I said to him when he checked on the walnut.

He gave me a stern headmaster’s stare.

“We don’t need to do anything, Francessa. It’s a nodule. Many, many people have them, especially Jewish women.”

Huh? I nodded. It had taken all my courage to get the sentence out, and I could say no more.

“OK.” I finally mustered, unsatisfied and uncomfortable.

“We’ll biopsy it. All right? If that will make you feel better,” he added. It sounded like an accusation.

But I welcomed anything that might reassure me that I was going to be okay.

I had the walnut biopsied every year for seven years, and there was no change. Every time the six-inch needle pierced my neck flesh, I winced guiltily for making the doctor check it.

* * *

The first time I shit in my pants I was on the platform of the Number 6 train. I was twenty-six, and a cup of coffee I’d sipped now led to stomach pain I can only classify as agonizing. Though I did everything in my power to get up the subway steps and into a nearby restaurant to relieve it, my cold, shaking body had to let go three steps from the top. The problem in a situation like that, I have since learned, is that walking makes it worse, and stopping gets you nowhere.

Now covered in a putrid brown film that no one could mistake for anything else, I sprinted in shame to my gym, a place that had been my salvation. I rushed? into the shower with all ?my clothes on, peeled ?them off, pumped bright ?green body soap into the crotch of ?my jeans, and threw away my balled-up underwear in a naked dash from the scalding shower to my locker.

When I was finished, I sat on the cold metal bench with towels draped over every part of me, my jeans and tee shirt and bra draped over the bench. How could I possibly live a normal life like this? How could I one day take care of someone else—a child. My child?

I should tell Nick it’s over, I thought. Let him find a woman who is healthy and strong, always ready for life.

Yet I felt elated, having escaped the stomach pain that had overtaken me a half hour earlier. It was blissful, this pause, like a welcome inhalation of normalcy.

I learned later that year that autoimmune disease means your body is attacking itself. It’s chronic pain you can’t escape. You can’t run away from it because it’s inside of you, in some ways it is you.

A delicate young woman with a black gym tee shirt came over to me in the locker room.

“Are you okay?” she asked me.

I nodded, unable to speak. A rising ball of humiliation threatened to choke me, almost like the giant walnut within me. “Do you want me to dry those for you?” she asked gently.

I sighed with gratitude, nodded my thanks and sat in tiny white towels for the next forty-five minutes while a woman I didn’t know dried my shit-stained clothes. She handed them to me in a CVS bag someone had left behind. I had no choice but to put them back on. I proceeded to walk home, seventy-three blocks and two avenues and one bridge, just so I wouldn’t have to get on the subway again.

All this time I hadn’t only been growing a walnut in my throat and developing an angry belly—it felt as though I’d also been growing new skin. Heavy skin. Skin that felt bruised in every pore. Soon, simply turning over in bed was torture. My skin was calloused, pocked, red and raw, especially in the joints.

The doctor told me this pain was peripheral arthritis, connected to the Crohns disease I apparently had developed to accompany my thyroid autoimmune disease.

He actually said, “It goes nicely.”

* * *

On a Tuesday I went to have my thyroid walnut biopsied, and, three weeks later, I was having it removed.

“I’m sure it’s nothing,” the doctor said. “It’s so rare to have cancer so young,” a second doctor agreed. “Plus, thyroid cancer is a good one to have, if you have to have cancer at all.”

When I turned twenty-nine, I went into Lennox Hill Hospital to have my whole thyroid removed. Doctors suggested I just take half out and “see what we are dealing with,” but I was getting to the point that enduring two back-to-back surgeries was an unbearable alternative. And, I was starting to doubt that these doctors knew what they were talking about, so I demanded they remove the whole thing.

I recovered fairly quickly from the surgery and was home on the couch, a cat curled in the indent of my knees, watching “The Golden Girls,” when the phone rang.

“I don’t want you to come all the way in to hear this,” the surgeon said. “It turns out it was cancerous after all.” He added quickly, “But the good news is, it’s out, so you don’t have cancer any more. Probably.”

Probably?

I remember hanging up the phone and staring at the TV for a full five minutes. When I thought of Nick, my stomach curdled into ice-cold cement.

“I can’t believe I will never see my own children,” I mourned out loud. And then, “I can’t believe he is going to love someone else.”

Assuming I was going to die, I couldn’t bear the idea that Nick would have a whole life, a good life, a long life, after I was gone. And the children he would have would not be mine.

I called him. “It was cancer,” was all I could say. He was home twenty minutes later, sweating as if he’d run the whole way.

I’ve always been angry that the doctors didn’t acknowledge that I had cancer. For years, they told me I was fine, I was overreacting, nothing was really wrong with me, and then they took the thing out, diagnosed it, and it wasn’t mine anymore.

I am, of course, grateful it is gone, but I can’t help but feel cheated. It is a strange and wicked reality.

In a bout of post-cancer depression, I lay on our couch for twenty-two days. No extra radiation was needed, but I ducked out of society anyway.

No one but Nick knew how long I stayed there, only getting up to pee, eat, and feed the cats. I ignored calls and Nick ran interference. Sometimes, he would come home, walk over to me, kiss my head, make us dinner, and tell me about the world outside.

“It’s nice out, Fran,” he said at the beginning of April, two months after my surgery, seven weeks after diagnosis of something I no longer had inside of me. I nodded through heavy eyelids.

Soon after, Nick took me to Jamaica so I could get away. It was such a beautiful thought, to take me away from the grime of the city so we could spend a few days on the beach. It was a grand gesture because we didn’t have the money, and my guilt spread as I agreed. I didn’t have the heart to tell him I couldn’t imagine anything less inviting than spending hours on a plane, in line-ups at the airport, without the comfort of my own bed at night, in a strange, hot place.

The first night, I had a glass of wine and watched the resort show, thinking that if I were pulled up on stage to dance like some of the other vacationers, I would just have to lie down on it.

“You look great,” Nick said to me, smiling his crinkly smile and touching my arm. He was a liar, but he was a sweet liar. I looked at myself in the mirror behind the bar. My eyes were rimmed with a yellowish tint. My skin was flaky and beet red from the sun be- cause the medicine I was taking made my skin sensitive in a new, exposed way. My neck was swollen and my fingernails, for some reason, were blue.

“Thanks,” I said, smiling back at him, knowing that I was about to throw up.

I muttered an “I’llberightback” jumped off the stool and dashed back to our room, three outdoor stairways away. I slammed myself through the bamboo bathroom door and didn’t make it to the toilet. Orange vomit covered the walls of the bathroom, sliding down the tile in gooey bits. I lay down in the middle of the room on the bathmat, and a few minutes later, Nick knocked on the door.

“Fran?”

I couldn’t answer.

“Fran?” He pushed in the door and took a step back. I am sure what he saw repulsed him, and though I couldn’t possibly move, I imagined retreating even further into myself.

“Oh, honey,” he said sadly. He got a towel and washed the walls with the floral soap from the shower, scrubbing the floor, literally mopping up the mess.

“I’ll be right back,” he said, and took the bundle of towels out into the hallway. When he came back in, he had bedding, a pillow, and a glass of water.

“Can you drink this?” he asked gently.

“I don’t know,” I squeaked. “I don’t know if I can sit up.”

Nick came over to me and slid down onto the mat next to me. He smelled like the floral soap and salt water and the beer he had abandoned. Lifting my head in his hand, he tipped a small sip of water into my chapped lips.

“There,” he said.

He put the glass of water down on the floor?next to me and I rested my?face on the tile in front of the bathmat, the coolness an astounding relief.

Nick tucked my head under the pillow and made a floor-bed under me.

“You don’t have to do this,” I croaked.

He ignored me and slid his body down next to mine. “Try to sleep,” he said.

I tried to nod as his hand traced light circles on my back.

* * *

Since that day, I have been to many doctors, but rarely one who smiled. So when I started to see OBs, I feigned calm as they poked and prodded, expecting a deluge of bad news, like “barren,” and “unable.”

I surprised myself (and Nick, too, I think), when we got pregnant swiftly, without event. Both times. And both times I was nauseous and swollen and pimpled and sweaty and so, so tired the whole time.

But I was a “healthy” sick. Which was new to me.

Finally, both times, my body was working like a normal woman’s, and I was finally growing something inside of me that wasn’t going to kill me.

* * *

Our son was twelve weeks old when Nick went into the hospital the first time. His first migraine was now six days old. The second time we were practiced in both migraines and newborns, but this one was accompanied with a stomach pain that drove him to his knees.

Covered with monitors, IVs and confusion, Nick stared at me in disbelief. I could only stare back. We were in the wrong roles and weren’t sure how to act them out. I grabbed his hand and squeezed the bruise that had started to form beneath the IV needle. He winced, and I mouthed, “I’m sorry.” So I did what he always did for me. I called his family, got him a ginger ale, cleaned his chin, rubbed his back, sat in the chair, and waited for answers.

We don’t have an answer, even today, for the disease that clots Nick’s blood. Until we know what it is, and probably even if we do, he has to take a blood thinner that prohibits him from any activity in which he might bump his head and bleed to death. He can’t ski or play basketball, and if he gets into a car accident, the prognosis is grim.

But there is more. Our roles have changed and meshed?into one. There is no longer the strong and the struggling. Now we are both.

There is not much we can do. We go to yoga on Tuesday mornings. I work part-time. We both take generic Paxil. We stretch our dollars, we cook on Sundays, we watch Millionaire Matchmaker and chuckle.

Even in the most peaceful, mundane, white-picket-fence version of our lives, there’s a tinsel-thin fear. Another knowledge, one neither of us will admit.

Sure, I’m scared he’ll collapse again from the pain of a clot, shield his eyes from the agony of light, or that his bruises will spread until they paint his skin purple. Or worse, that we won’t see the bleeding, and it will drown him from the inside.

I’m scared I’ll be aimlessly squeezing my flesh and come upon another marble pea that won’t be so easy to remove and will snowball rapidly. But there is more than that.

It is quiet, this fear, and it says: To have two sick parents is a curse. As I tuck in my son and I kiss the wispy hair on the back of my daughter’s sweet head, it whispers around the room. What if they lost us both and had to fend for themselves? Even worse, I wonder if there are silent horrors swimming around beneath their skin? Will their genes betray them? What have we done?

It does not escape me that my two children grew out of me the same way everything else has. They, too, started tiny and unnoticed, growing into the small, wonderful people they have become. I made them.

We made them.

Which can’t be good.

When one of them gets a cold, I prepare for tuberculosis. When one has a bruise, I take a sharp breath in, praying it will not grow. And fevers, well, they just about crush me.

Will my daughter shit in her pants on the 6 train? Will my son be attacked by knots of blood in his veins? Will they grow things the size of olives, walnuts, golf balls under their skin? Will they demand they be removed? Will they hate us for it?

I didn’t drink alcohol for nine months both times I was pregnant. I power-walked and did yoga, tried to sleep well and limited my medications to those that were absolutely necessary. I ate eggs. I did everything I was supposed to do to keep my babies safe and healthy.

But I couldn’t give them healthy, strong parents. And I don’t know how to live with that.

We have dinner together every night, the four of us, like the family we hope we can be.

“Mama,” my son says, his dark brown eyes wide, a yogurt mustache tracing his upper lip.

“Yes?” I say, controlling myself not to wipe it off for him.

“Will you take me to school tomorrow?”

“I can’t, babe.”

“Why?”

My daughter parrots, “Why?” in a two-year-old voice that barely makes sentences work. But her blue eyes are expectant.

“I have to go to the doctor, guys.”

“You always have to go to the doctor,” my son replies, annoyed.

I can do juice cleanses and downward dog myself into my forties. I can strip the negativity from my bones and delete phone numbers from people who will never be real friends. Nick and I can eat more quinoa, love each other late into Sunday night, cut up credit cards, and find family-friendly bikes.

But the very real possibility that something new is happening, is growing beneath the surface of our collective skin, is almost impossible for me to stomach. Though the only choice for us is to try.

Author’s Note: There is a thin line between having it all and losing it all. And it is on that line I balance, and I think we all might balance. We, as mothers, as women, as humans, all teeter between an ecstatic celebration of what we have—a job we are proud of, some people who love us, a home we make—and the impending terror of the possible—a sick parent, or child, or us, a money catastrophe, a splintering friendship, relationship, marriage. The thin line is where life is, and we grab it with our toes, begging them to brace us. That line is where I like to hang out, where I try to write. I hope it is the place where fact becomes truth. This essay turned me inside out, and I feel better after writing it, like throwing up after a stomach bug, or coming up from a deep dive, gulping for air.

Francesca Kaplan Grossman’s previous and forthcoming work includes contributions to Motherlode, the Huffington Post, Ed Week/Teacher, Glasscases.com, among other publications. Francesca lives in Newton, Massachusetts, with her husband Nick and two children, Theo and Brieza. She is currently working on her first novel, The Night Nurse, and a collection of personal essays, The Math of Me: A Collection from a Life out of Sequence.

Expectations of the Fall

Posted on December 2, 2013 by CNF • Posted in Articles Page, Highlights • Tagged age, birthdays, cancer, essay, Kathryn Wallingford, loss, mothering, parenting • Leave a comment

By Kathryn Wallingford

My seasons are shapes. The long tunnel of Winter. The triangle of Spring. The four lines of Summer. We all come together in the Fall. My birthday marks the onset of Fall.

Years ago, for my 8-year-old birthday, my three friends and I watched Bette Midler’s Beaches. It is a terribly sad movie about dying, friendship, and heartache. We cried while my mom popped popcorn, and peered inside the family room to watch this remarkably strange celebration. But even at that young age I seemed to know that Fall had expectations.

Fall is here again but I can’t remember how to rest, say goodbyes, and prepare for Winter.

Leaves know the cue: they produce less, they let go of chlorophyll. They let themselves fall and they come into the earth.

But this Fall I have a lot to put together, to pack, and to store. I say goodbye to my house of almost a decade. I moved into this old house right after marriage and sobbed over the 2500 square feet. Each foot seemed burdensome and pleaded for domestication. But each room also found a place and we filled the home with footsteps and dog hair. I am okay taking my family elsewhere. It is time for a new family to enjoy the creaks and cracks, but I am worried about the plants I leave behind.

In April 2006, I cried ferociously as I planted my coneflowers– mad as hell at my graduate professor. When my first son was born, I carried pieces of limestone from the Kentucky River and formed a vegetable garden. And now my two boys run through the lemon mint, catching its aroma with their superhero pajamas.

This new house will have room for new plants. We will also have to make room for this new baby. Another baby, I think? “It is no small thing that they so fresh from God, love us,” I recite in my head. I think of my friends struggling to have their own and I surrender myself to guilt. But how can I love a third? I know too much of toxins and disease. I left the summer saying goodbye to a friend.

I met this cancer this Summer, my four walls quickly invaded.

This Summer I also planted marigolds and saw a bear. The marigolds came first. I know marigolds like sun. Marigolds keep bugs away. Marigolds are copious. I counted on this-the sun, the growth of flowers, the ceaseless flow of life.

On these summer days when there was no rain, I pulled a blanket from inside and spread it onto the grass. My boys littered the blanket with peanut butter crackers and slices of bananas. Sometimes the bananas smashed like molasses. And sometimes they would pick the marigolds and throw them on top of the bananas. Fruit and flowers.

I would lie down on top of our creation and stare at the clouds. “There is a rocket ship,” I told them. I saw it in the clouds. But their feet were too quick, too busy to stop. So I searched into the sky alone.

When the sky turned purple, I took my boys inside. I gathered the blanket. That is when life began to feel heavy. It was more than the encroaching dark clouds and the June storms, it was the weight of the world.

It seemed to be the end of everything.

The last night she was in the hospital the parking attendant had said, “have a good night.” He said it steadily and calmly. I wondered how he could pass out goodbyes so quickly, so easily? He had not seen what I had seen. Her colossal-like strength reduced to nothingness. Where was her silent killer? He did not know the weight I carried.

The end of the colossal-like strength and the death of my dear friend and neighbor actually came before the bear.

The day I saw the bear the air was heavy and thick with humidity. Each summer I visit my parents in the Blue Ridge Mountains and wander the woods alone. I look up into the trees and remember that bark has faces too. The smoothness of beech. The deep-wrinkles of oak. The muscles of hornbeam.

On that day a grey fog covered Grandfather Mountain. The forest was dark. It was only 11:00 in the morning but it appeared like nighttime. The path was splashed with large rock outcrops and I looked downward. I needed my eyes to see the next step. I rounded a curve and followed the path upward, pulling my legs over a fallen tree. And as my eyes searched for my trail I saw her blackness staring at me.

It was a black bear. I had been around bears before. I had worked and lived in various national parks drowning with grizzly, brown, and black bears, I knew what I should do a when a bear was staring at me beneath a chestnut oak tree and a standing in the patch of solomon seal. I knew I should walk away slowly, but she was the deepest part of the earth I had seen in a long time. I had to stare.

Neither one of us wanted to be looking at the eye of a stranger and wondering what was next. But she seemed to have all the answers and I suddenly wanted my children to be there too.

Maybe the truth of life would come to them in this instance. The quietness that eludes from looking something unpredictable in the face. Something bigger than you. Quiet with fear. What can you hear when you listen? The cry of a towhee. The heartbeat of a hummingbird. Yes, another robin. Or maybe even a bigger voice? What would she say in her wildness. Had the summer rains altered her patterns too? And would she help me explain death, saying goodbye to the ones we love, the myths of heaven, my hopes for an everlasting spirit?

The depths of death are near impossible to explain to a four and 2-year-old, and yet fundamentally easy. Our bodies just get tired. And there are other theories: we are cursed, God has another plan, we go to a better place, or we give up on life. But what if I did not have to provide any of these rationales and just a glimpse of a bear in the woods?

The bear grew bored with my gaze and eventually retreated into the woods. We parted

I think about my bear now as I try to complete my circle of Fall. Hunkering down for the cold months ahead. Preparing for Spring. Planting new life.

Fall will not let me forget goodbyes.

I don’t make the time I once did for tearful celebrations of life, but I need it this year more than ever.

My birthday has come and gone this year. I did not watch Bette Midler’s Beaches, but I did pack boxes. I see those pictures of my college girlfriends: our midnight swims, all-night road trips, and Friday afternoons getting lost in the East Tennessee Mountains. I see a picture of my mom tubing with me near Sliding Rock, North Carolina in the mid-1980’s. I forgot she had a perm, but didn’t everyone? I see my brother and I, once my own sons’ ages, dressed in superhero gear. I see my husband and I on top of a mountain in Montana.

Life lost, remembered, and stored away. I wrap tape around the boxes.

Kathryn Wallingford is a stay-at-home mom in Lexington, Kentucky. On good days, she writes about religion, mothering, and the natural world. Her most recent work has appeared in Literary Mama and Hip Mama. She can be reached at katjean24@gmail.com.

Inappropriate

Posted on October 16, 2013 by CNF • Posted in Articles Page, From The Archives • Tagged breast cancer, cancer, daughters, motherhood, parenting, relationships, Teen, Tracy Lynch • 2 Comments

By Tracy Lynch

There’s a word in our household that is used rather often. I wouldn’t have thought much of this word even a few weeks ago, but for some reason, its presence has buzzed around my ear lately like a fly-by gnat. Not annoying, but just often enough to get my attention.

The word? “Inappropriate.”

Our family unit has used the word for many moons to describe shorts that are too short, dogs doing their business, the phrase “Shut up,” and the kind of dancing performed by the younger, more-Beyoncé-like daughter. My daughters’ friends giggle it from the backseat of the minivan; my husband utters it when one of his girls pretends to wear half-shirts; I whisper it when one of the girls forgets her manners and comments on the girth of the man in line at the grocery store. It’s a one-size-fits-all term.

When my daughters used this word at a younger age, it was endearing and adorable. The word stumbled out of their mouths whenever something simply wasn’t proper or right according to their itty-bitty worldviews. Recently, however, I’ve noticed a difference—a shift in usage—and that’s the buzzing in my ear. Now that the girls are ten and twelve, no longer does That’s inappropriate refer to something forbidden. Its current translation is now something along the lines of I know that’s wrong or feels weird to me, but I don’t know why and I don’t think I want to know. Or maybe I do. Why are the grownups laughing? What’s going on with my understanding of the world around me?!

My response has shifted, too, moving from adoring to slightly unsettled. The weight of the word seems heavier as their definitions of “inappropriate” evolve from childish simplicity to adolescent curiosity. A few years ago, my older daughter giggled with glee as our new puppy “hugged” her leg “over and over and over.” “He must really love me!” she laughed breathlessly. Fast forward to the present, and the same daughter, now awkward in her own beautiful body and entering seventh grade, stops suddenly one morning to chastise the same dog (who is now also old enough to know better): “Fergus! Bad boy! That’s inappropriate!”

A line has been drawn: the line of understanding. True, it’s a thick line, a foggy patch in the cognitive landscape, but it’s there. My daughter, thanks to her growing brain, “family life” courses in health class, and television we probably shouldn’t let her watch, knows now that something is just not right. But she also knows enough to know that she has no idea what that is. Something that was once hilarious is now taboo. My daughters may not know why, but they are on the verge of knowing why. And for some reason I can’t quite put my finger on, that makes me a little sad.

Once I became aware of this shift, I found myself listening more intently for the word “inappropriate,” swatting at its buzzing with my own attempts at understanding. Finally, I’ve come to this: “That’s inappropriate” is an off switch. It’s a way to stop the conversation, the image on the screen, the dog humping your leg … and thereby stop yourself from thinking too much about something that just doesn’t feel right. If we label something as inappropriate, we stop ourselves from walking through the thick, foggy patch, through the unpleasantness and toward understanding. “That’s inappropriate” keeps us safe. It keeps us comfortable.

For my daughters, and for kids of all ages, that’s okay. That’s called learning your own boundaries. We give children permission to ease themselves into what is and is not appropriate because they are, after all, kids. They are preparing to travel through the foggy patch. Sometimes what growing kids want to label “inappropriate” really are just parts of growing up, like buying training bras, discussing armpit hair and how to work a razor, or talking with your mother about a boy you like in your math class. This kind of understanding can be uncomfortable, but if all goes well, my daughters will emerge on the other side with understanding as their souvenir. Why do we, as actual grown-ups, use the same off switch, “That’s inappropriate,” for any number of situations and in any number of conversations? What are we so afraid of? For some (like me), political discussions are often inappropriate. So are religious ones. Reflecting on it, I may know why: I get too nervous discussing a point about which I’m not well versed for fear of being called out. Applying the off-switch word—inappropriate—can stop a conversation before it even begins. Of course, perhaps I could benefit from the understanding that broaching these so-called inappropriate topics could bring. Probably. Maybe. After all, turning off conversations has the potential to make us miss out on pretty significant growing up ourselves. If the adults of this world would strive to constantly re-evaluate what we consider inappropriate, we could charge, head-first, right through those foggy patches and toward understanding. Or casually stroll. What’s inappropriate to some is, after all, inspiring to others.

Take the work of David Jay, for example. Jay, a photographer who is slowly gaining respect and world recognition for his The SCAR Project, photographs of women who are on the other side of breast cancer and have the scars to prove it.

I first stumbled on Jay’s photographs on Facebook. They were going viral, and the link was passed around to tens of thousands of members within a matter of weeks. SCAR stands for “Surviving Cancer. Absolute Reality.” The photographs are, at their very basest level, real. It’s difficult to express the effect his photographs had on me, not because I’m quiet about the emotions they brought (and continue to bring) to the surface, but because, for a long time, I wasn’t quite sure what those emotions were or even how to describe them. Here was a man who was putting to print the most secret, private part of me. A part of me that still felt a little too new to share.

Two years ago, on June 12, 2009, I had a bilateral mastectomy to begin my seven-month treatment of Stage III breast cancer. Walking around without breasts has become only a part of who I am, but it’s always a reminder of what I’ve been through: my own absolute reality. I may not know one woman in the series, but everything about them, their bodies, their eyes, reflected me. Reflected what was left of my cancer. Jay’s photographs tore off the clothes I had been wearing to cover my scars and invited others to click “like” at what they saw. To share these photographs with people, as I felt compelled to do, was in a sense to show them myself naked. My family and friends could now see, on the chests of these women, what breast cancer had done to my body and, through their eyes, to my spirit. SCAR is what happens after the chemo, the surgeries, the hair loss. People who view the works have the chance to be informed.

Or to be confused. Or surprised. Or, even, afraid.

After my surgery and subsequent healing, my own daughters were no longer comfortable being with me when I undressed. A nudist by nature, I was profoundly altered by their response to my naked body. Nights spent putting our PJs on together were no more. Instead, if they saw it was time for me to change, they practically ran to their room, often shutting my door behind them lest I forget to do so myself. They were little and could not be casual about their aversion. My younger daughter, nestling with me in my chair one night, once I was healed enough to snuggle, rested her head on my chest and told me she missed my breasts, that I was too boney and not comfy anymore. The same daughter, with her trademark full-disclosure policy, instructed me once to change clothes in our hotel room bathroom, alone, away from them. She waved her hand in my chest’s general direction and explained, “That’s just creepy.”

This was almost a year after my surgery. Time and again, I was crushed by my well-meaning and brutally honest girls. I was less of a woman. I was a mystery. And, the most difficult pill to swallow, I scared them. My body was, to my daughters, inappropriate.

* * *

What my girls couldn’t handle in the flesh, many adults were uncomfortable with even just on paper. Jay’s photos, I learned, were deemed to be too real, too honest, and to show too much. There are nipples. There are lack-of-nipples. There are the curves of a woman’s shape. There are the glaring absences where a woman’s shape should be.

This winter, I worked on a writing project about SCAR and I had a chance to discuss this with Jay himself. He told me that only online publications ever included images of his work. Not one print outlet had ever shown a photograph. None would. One Italian journalist told me that her editor would not include his images in their publication because “he says the images are too much strong, that he makes feel bad.”

The editor’s statement, even in its broken English, says a great deal about what we, as grownups, see as inappropriate in the world. Why are the images so jarring? Are they too painful? Is the “absolute reality” a combination of nudity and illness (or the aftermath of illness) that causes a deep confusion—or simply hurts too much? Is it pushing us too far, too fast toward what we don’t understand?

For kids, facing the inappropriate is scary because they’re learning something that they didn’t know before. Is it the same for adults? Was the Italian editor—merely one of dozens made uncomfortable by the prospect of printing the photos—also afraid of that foggy area, the one that would allow him to cross to the other side, to understanding? Did he turn the switch off? I believe he did. And I believe that he and dozens and dozens of other print journalists missed out in the process. Unfortunately, so did their readers.

One evening in November 2010, a few months after I discovered Jay’s photographs, I was re-examining his extensive collection online. One by one, I clicked through the pictures, sucked into their honesty, until I slowly became aware that someone was looking over my shoulder. It was my younger daughter.

“What are you doing, Mama?” she asked, quietly.

“Looking at these amazing photographs.” Long silence. “Do you want me to stop?”

“No,” she said softly, and I continued on. Eventually, we reached a photograph of a beautiful woman, arms stretched high over her head, that revealed penetrating eyes and double-mastectomy scars.

“That looks like you!” my little girl practically gasped. I agreed, and we sat there in silence until my other daughter slowly came over, timidly, ready to see, too. They were safe there with me, computer screen in my lap, and they saw something new in that woman who looked like their mother.

A few days later, getting in my comfy clothes for the night, I gave my usual precaution to my little girl: “I’m getting ready to change, honey.” Our unspoken agreement had, over time, become Yes, it’s okay for you to leave now.

“That’s okay, Mama. I don’t need to go.” So she stayed. And we talked, and we giggled. One night soon after, my older daughter, typically more timid, joined us.

Neither of my girls has looked away since. I can try on clothes in cramped dressing rooms with them by my side again. They are comfortable whispering to me when my shirt is askew and showing a bit too much of my scars. I have been given the gift of time back with them.

Two years later, and we’ve turned the switch to on.

Author’s Note: My husband and I were overwhelmed by the love that came our way during my breast cancer diagnosis, treatment, and recovery. We used to talk about how we could actually feel it. I continue to be grateful for it to this day, and whenever I need to slow down, relax, or remind myself what I’m on this planet for, I just have to remember all those gifts, actual and emotional, from those who love us. It still strikes me as nothing short of miraculous that a stranger gave me the biggest gift of all. David Jay’s work changed how I viewed myself, absolutely; he’s gotten that kind of moving feedback from women all over the world and is still humbled and surprised by it. What I don’t write about in this piece is how much SCAR helped me to accept my body, to view it as more than just “appropriate.” Beautiful, even.

Brain, Child (Fall 2011)

This Sucks

Posted on October 2, 2013 by CNF • Posted in Articles Page, From The Archives • Tagged breast cancer, breastfeeding, cancer, children and childhood, emotions, Kelly Feinberg, loss, motherhood, New Born/ Baby, new mom, parenting, toddler • 3 Comments

By Kelly Feinberg

Sometimes it happens so quickly, so seamlessly, that I’m not even conscious it is happening. I’m standing in line for a smoothie and a sweet potato muffin at our local co-op, say, and I go to unsnap my wallet only to realize my eleven-month-old son has pulled my hand up to his mouth and is sucking on my finger. Or I’m talking to a stranger who has stopped me to compliment my baby’s big brown eyes, his welcoming smile, and suddenly I’m aware of a line of drool sliding down my wrist. Embarrassed, I try to pry my finger out discreetly, but this kid’s had a mean suck since the moment of his birth. And it’s not a quiet, discreet suck either. When he takes my fingers to his mouth, it’s like they are his own and he’s just enjoyed a satisfying meal of barbequed ribs. There are sound effects and facial expressions. Whenever I try to take back my dripping digits, the result is often a sharp tug to his clamped little jaw or a loud popping sound and a spray of saliva. These are not mothering moments I’m proud of, so I often let the sucking continue while trying to make a quick getaway, mumbling something about teething.

When our son was about six to nine months old, my husband and I justified the whole finger-in-mouth arrangement because we believed Ari, who showed no interest in a pacifier, needed to suck on our fingers to ease the pain of incoming teeth. “Those poor little gums!” we’d soothe while rubbing the hard ridges that signal incoming teeth. Yet now all four front teeth are securely in, our son has grown into an accomplished eater, and still, as he reels toward his first birthday, his desire to forcibly take a finger and work on it like a peppermint stick only increases in fervor.

In part, I blame Dr. Sears for getting us to this point. If we had known that his advice to slip a finger into a breastfeeding baby’s mouth while transitioning to sleep would get us to this point, I don’t know if we would have taken it. My newborn barely napped during the day. Was it really that bad to let him soothe at my breast while sleeping? In the middle of the night, I never tried to release my baby from my breast; I just slept peacefully and soundly through nighttime feedings and (what was often) all-night nonnutritive sucking. I even enjoyed it. So why did I need to trade breast for finger during the day? We love Dr. Sears’ parenting philosophies, but we’ve pored over many of his parenting tomes and we just can’t find the next step—how do we now get our fingers back? I’m not the nervous, first-time parent type, but I have to admit, I’m starting to get worried.

When I’m able to step back and understand Ari’s sucking as an emotional need rather than a reflex or developmental stage, I feel tired, more than just from lack of sleep. I feel the weight of all that’s happened in the past five months, nearly half of his young life. When Ari was only seven months old, I was forced to wean him from exclusive and happy breastfeeding when an enlarged milk duct turned out to be cancerous. Due to my age, treatment needed to be swift and aggressive, involving a bilateral mastectomy. One day I breastfed Ari on demand, wore him wrapped tight against my chest, and slept with him skin-to-skin; the next day I mixed bottles of formula to hand over to my husband and moved to the other side of the bed, out of reach. Between the pain of weaning and recovering from the surgery, it was a good three months before I could swoop my baby up into my arms again and hug him close.

Through all of this, the Aerobed stayed inflated in the nursery as friends and family arrived in shifts; I simply couldn’t be alone with my baby. On top of it, right when I was really healed, my husband left for a month-long research trip and our presence in Ari’s life reversed again. Daddy was now out of reach, and Mommy was the constant. This might explain why “I need to suck on a finger sometimes,” which had always been directed at the closest warm body, has evolved into “I need to suck on Mommy’s finger at all times.”

Over the last few months, how I feel and how I react to my only baby’s favorite pastime depends a great deal on my own physical and emotional state. Pad over to me in the morning after a decent night’s sleep and a cup of coffee, and I’ll gladly let you lay your sweet little face against my leg for a quick sucking session between block play and a game of hide behind the curtains. Keep me up from two a.m. on by rolling over constantly and arm wrestling my finger to your mouth until it feels raw like a skinned grape, and I’m not so generous. I may snap and say things aloud I’m not proud of like, “Why don’t you suck on your own finger!” or “Do you want to sleep in your crib?” It’s not the questions themselves that I’m ashamed of really; Ari has been known to suck his own finger on occasion and he loves his crib, gladly taking his afternoon nap there every day, stretched out on the soft polka-dot sheets. It’s the angry, desperate tone I use when I get to the point where I’m offering ultimatums to an eleven-month-old that bothers me.

When the ultimatums during a night like this don’t work—as of course they don’t—I may do something drastic to avoid more relentless sucking during morning nap. Something crazy that I would be ashamed to share among the home-birthing, baby-wearing, attachment-parenting set I aspire to be a model member of. Something like, oh, maybe pulling a gardening glove printed with tiny watering cans over one hand like some deranged Michael Jackson impersonator in order to deter the relentless suckerfish. When the glove gets in the way of Ari’s mouth, he lets loose a terrible sobbing cry; his chubby baby fists pinch and swipe. When wrapping him up and wearing him doesn’t work (his reach is impressive and he doesn’t mind wrenching my wrist to get fingers into their proper angle), I try to soothe him in different ways that I remember from my days working in a daycare. I rub his back and swirl his soft baby hair, I shush him softly, I put on the new lullaby CD his grammy gave him. Over and over I say the mantra I’ve been whispering since I first held him in my arms. Mommy’s right here. Mommy’s right here with you. But to him I’m not really there. Not all of me anyway, not the part he wanted and needs to feel secure and to drift to sleep. Ultimately, I pull the glove off when I realize that we’re both crying, that we’re both feeling angry and desperate and out of control. I give him my finger and together we give in to much-needed sleep.

* * *

The hardest part about parenting a baby with an intense sucking need, whatever the cause, is other people’s responses. There’s obvious and unhelpful advice like “Have you tried a pacifier?” and “As long as it’s only occasionally…” There are the judgmental sideways stares from the childless woman on the small commuter plane (she visibly and audibly expressed her displeasure when I sat next to her), and there are the sympathetic and depressing half-smiles of other women in the waiting room of my breast surgeon. Most of the time, I’m sure, I have only imagined a public response that I then internalize and fret over the next time Ari grabs my hand. I have blushed hot from embarrassment while Ari sits in my lap at a restaurant, sucking away while I try to finish my dinner, and I have ended conversations with neighbors on my own front porch because I felt exposed, as if it wasn’t my finger in my baby’s drooling mouth, but instead my full, naked breast leaking milk down his chin.

And what if it were? Didn’t I breastfeed this same baby on a ledge, crowded with midday shoppers, overlooking a public market? Didn’t I pull up my shirt and offer my breast at a baseball game, just off the path on a hike, sitting in a hard plastic chair at Target? Then, I felt important breastfeeding in public, a champion of all things natural and best for my baby. Now I just feel sad. My finger is a poor substitute for breastfeeding, and my baby and I both know it. It is evident in his continuous, never-satisfied suck and in my impatience.

One day, while I’m chatting online with a friend who doesn’t think she wants children (and who isn’t keen on hearing what other people think about someone else’s parenting choices), I mention that Ari continues to suck on my finger. Christi was one of my first caregivers after the surgery: a nursing student, longtime friend, and someone I admire for her intelligence and fearlessness. “I’m just so worried that Ari’s going to be screwed up because I had cancer,” I type. “There was a two-year-old in my toddler class once who made herself throw up the whole time her mom went through chemo. What if this never goes away?”

Christi’s answer is humorous at first and I appreciate the chance to laugh. “I sucked my thumb until age twelve and I’m fine,” she writes. But then she adds that we’ve all been through a lot as a family. “You’re doing a good job,” she reassures me in that small text box at the bottom of my screen, “an unbelievable job managing it all.”

I read her instant message—filled with typos as our notes back and forth always are, we’re so eager to talk to one another—and I just feel better. Maybe that’s all I need, that stamp of approval, that understanding of our particular situation that I can’t get from a Dr. Sears book or from a stranger who happens to be sitting at the table next to me in a restaurant. If I can just let go of the feeling that I failed my son when I stopped breastfeeding him and that my body failed me when it fed cancerous cells, then I wouldn’t worry about what we look like in public.

If anyone asks why my one-year-old is permanently attached to my hand, maybe I should just tell them the truth—that I’d prefer to be breastfeeding but can’t. That breast cancer sucks, that weaning a baby before you’re both ready sucks, that not being able to hold your next baby to your breasts sucks, and that being hard on yourself for your parenting choices sucks, thanks for asking. And then I’ll go back to adoring that little boy in my lap who only knows how wonderful it is to suck; how dreamily soothing and simple.

A note from Brain, Child Editors: Kelly passed away on Friday, May 14, 2010, about three months after writing “This Sucks.” The essay won a 2010 Pushcart Prize posthumously.

Brain Child (Spring 2010)

My Mother’s Brave Story: The Tale Of Ilana

Posted on September 5, 2013 by CNF • Posted in Blog • Tagged cancer, childbirth, family, pregnancy • 2 Comments

By Andrea B. Siegel

In the summer of 1991, life was as good as it had ever been. I had previously weathered a miscarriage, two bouts with breast cancer and resulting mastectomies, a difficult stretch through graduate school and a major geographical move. Now I was happily married, healthy, with school behind me. With my second husband, Win, and our young daughter, Hannah, I felt Arizona was a new start. Win found a good job and we’d bought our first home.

At first, we were both ambivalent about another child, but Hannah longed for a sister and, as time passed, the thought of a baby became irresistible. Though I was over thirty-five and had had health problems in the past, we decided why not? The time felt right and there had been no sign of cancer for years. I’d had no trouble conceiving or giving birth to Hannah. After summer check-ups with the doctors, and with their cautious approval, we went ahead. In early September, the test stick in the home pregnancy kit turned bright, positive pink. Hannah’s sibling was on its way. I was nervous, but delighted.

Because of my age and medical history, I was considered high-risk and went to a group practice that specialized in such patients. I had more morning sickness than before, but that was okay—a small price to pay for a baby. As a routine precaution, the office used an ultrasound on all new patients. There was our baby, the size of an olive, perfectly formed, miniature hands waving. From that moment on, there was no question in my mind. This was my child—and I wanted this baby more than ever.

There was also, the doctor said, an insignificant cyst on my left ovary, probably where the egg follicle had burst. Very common, nothing to worry about—we’d keep an eye on it at subsequent appointments. We took our ultrasound snapshots home and showed them to Hannah who was delirious with joy. “Her” baby was finally a reality.

At my next visit in November, the cyst was still there and appeared to have grown. Again, the doctors reassured me it was undoubtedly harmless, but advised me to have it removed. Surgery would be quick, they said, maybe thirty minutes, fairly painless. I’d be back on my feet in no time. Win and I discussed it and decided to go ahead with the surgery as soon as possible. We opted for epidural anesthesia, instead of general, to minimize potential harm to the baby— besides, it was just a simple procedure.

I knew, during hazy periods of awareness throughout surgery, that something was terribly wrong. It was taking far too long and the mood in the operating room wasn’t right. When I came out of recovery, it was clear something bad had happened. And soon I heard it all—the cyst was a tumor, the cancer had spread. My ovaries, fallopian tubes, even my appendix had been removed because of malignancies. Many other areas had been cauterized for the same reason. It looked grim. One insensitive doctor rattled off my chances of survival: not promising. Other doctors presented the standard treatment: a complete immediate hysterectomy, followed by chemotherapy.

No one discussed the foremost thing on my mind: my baby. How had the baby done? Was the baby okay? How could we do a hysterectomy? My uterus was occupied! I kept thinking about the now plum-sized infant to whom I was already so attached.

Soon after surgery, amniocentesis results came in: we had a little girl, completely healthy. My survival was now more important than ever so I elected to go ahead with chemotherapy, though I asked my husband a hard question: what if I didn’t make it in the long run—did he still want this baby? Absolutely.

Ovarian cancer is insidious, often out-of-control before a patient even knows she has it. I had gotten check-ups from both a gynecologist and oncologist just months before my pregnancy and they had failed to detect it. My baby had given me a chance to survive. I would do no less for her.

With each passing week, I became more optimistic. Though I failed to gain weight, she thrived and grew; she had her own agenda. She was vigorous and kicked constantly. At times, I almost forgot that this was anything but a normal pregnancy. After 30 weeks, we were so confident we bought a crib and baby clothes; we contacted a diaper service.

The plan was to deliver her a little early by C-section, to complete my hysterectomy and do a “second look” at the same time. However, in April, at 35 weeks, I spontaneously went into labor. Tests showed the baby’s lungs weren’t quite mature. Labor and a vaginal birth would help develop her lungs, they said. Thus, the plans for the C-section were shelved.

Much to my wonder and joy, with my husband by my side, Ilana was born in the “usual” way late that night: pink, perfect, and screaming. She did need some help with oxygen, but only for a day; soon she was breathing well on her own, gulping down bottles of formula. Though small at birth, she quickly caught up. It’s almost unbelievable to think she went through months of chemotherapy with me, impossible to tell she was premature.

Pretty, lively, strong-willed, and sociable, Ilana is generous with smiles and recently began to laugh. Her big sister Hannah adores her. We all do.

We never doubted our decision. For reasons I can’t explain, I believed it would work out. And once I saw her, I was certain we’d done the right thing. Win endorsed my decision wholeheartedly from the start—I couldn’t have done it without him. Hannah’s affection and unwavering hope for her baby sister’s safe delivery helped make my belief even stronger. It was truly a family matter, a family decision.

Also, as time went on, many people rallied to our side. Support poured in, dinners were cooked, the house got cleaned, and offers of babysitting came from everywhere. We have been so thankful for the concern and help, the faith and generosity. Ilana has been a miracle in so many eyes. One friend wept the first time she saw Ilana, so overcome with emotion and astonishment that this baby actually made it, that I was still here to proudly hold her in my arms.

My own story continues. I’ve had more grueling surgery, more chemotherapy, many more difficult moments. My hair has fallen out, I’ve needed blood transfusions, and my weight dropped even more. My body has had a much harder time enduring chemotherapy since Ilana’s birth. It’s as if the pregnancy protected me against its worst effects. But at least for the time being, the treatment appears to be keeping the cancer at bay. As for what the books and doctors say, my prospects for old age are a long shot. Still, I’m not big on statistics or bleak prognoses. I had a beautiful baby against all the odds, and after that, I believe anything is possible.

Note: It occurred to me rather suddenly this June that it had been 20 years since my mother passed away from ovarian cancer at the age of 39, after two successful fights with breast cancer.

While it is somewhat difficult to face the strength of her optimism, knowing this piece was written months before she died, my mother’s story is beautiful. We enjoyed more time with her than would otherwise have been possible, thanks to the pregnancy ultrasound and her hope that she would watch us both grow up. I now live in Japan with my family and enjoy writing, much like my mother. My sister, Ilana, is a college student, who lives in Oregon and is returning from a year abroad in Germany.

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Time Travel Is A Voodoo Rite

Posted on July 29, 2013 by CNF • Posted in Articles Page, Highlights • Tagged cancer, children and childhood, daughters, emotions, Grayson Bray Morris, grief, loss, motherhood, parenting • 10 Comments

By Grayson Bray Morris

I know the secret to traveling through time.

I hold my daughter’s hand as the transport assistant pushes her gurney down the fluorescent hall. The wheels click against the irregular breaks in the linoleum. Right now I’m all here, in the anti-smell of hospital clean and the too-cold of hospital air. You can’t travel through time when the present is so insistent.

The assistant’s name is Tuggy and he makes fresh-squeezed lemonade so sweet your eyes turn back in your head. He’s gentle, slowing down for the bump across the elevator threshold, and I’m glad it’s him again today. We roll into Ped Onc and I help him inch my daughter into bed. What the tumor hasn’t paralyzed, radiation and chemo have sucked dry.

Tuggy dims the lights as he leaves and I crawl in beside her. I stare at the unique curve of her skull beneath the skin on her head. There’s a dip in the skyline where they took a sliver out; even so, they can’t tell us what she has. Two things, they say, it’s one of two. This one has an eighty percent survival rate at five years. That one is two percent. We’re treating eighty, but it will turn out to be two. I don’t know that yet; that isn’t what I mean by time travel. Time travel won’t get you from fact to fact. You’d think it would; it seems all gears and gadgets and the innards of physics, but the truth is surprising. Time travel is a voodoo rite. You split your heart open and knit together the past, present and future with your blood, then cast what you’ve created into the wind.

I move closer and breathe in her scent. The beep and whir of the monitors is steady, unlike gurney wheels on linoleum. You need that to travel in time. I think the voodoo words: someday she might not be here, and I won’t be able to smell her ever again. Here in the present, I lie with my lips against her hairless, blistered skin and inhale deeply, sending her scent forward through time in a rocketship bottle to wait for me, just in case. And suddenly I’m there, in that future where she died, drying off a fork or a plate and looking out the window at daffodils in the frost, dissolving the knit of the bottle against the skin of my chest, remembering the way she smells.

She comes home from the hospital thirty pounds lighter, tied up in IVs and puking. In time—ordinary time—the puking stops and the IVs come out, and I wheel her through the spring air. She points with the hand that still works to the little daisies pushing improbably through cracks in the sidewalk. We eat chocolate-covered cherries for breakfast and strawberries for lunch, fat red ones dipped in whipped cream and jimmies. The steroids that keep her brain from bursting with fluid pack the weight onto her, but it’s hard to notice, living in the moment as we are. We are burning through the present, incinerating every atom of the here and now. That’s another secret to time: the present slows down and expands to twenty technicolor dimensions as you approach the singularity, leaving no space for the past or the future.

We are within the event horizon when my daughter stops making recognizable words. She touches a hand to her head, where cells multiply like daisies, crowding out her past and her future. We dribble morphine in by dropper and hope it slakes the pain. I lie on a mattress on the floor in the silent dark of her bedroom. I don’t think I’ll sleep with my arm raised to hold her hand, but I do, and when I wake I see I’ve missed her last lucid moments. Her legs and arms are blue and I recognize her breathing, because I have been reading about this moment for months. I count the seconds between each fish-out-of-water gasp. Ten. Twenty. Thirty. Forty. I count eight times; the ninth breath never comes.

It’s as close to eternity as you’ll get.

The universe is frozen while we cut off her nightgown and wash and dress her. As I fold her hands over the blanket and tuck in the stuffed cat she’s slept with since she was born, time resumes its flow, but squeezing through the singularity has disoriented it; I cry for the future loss of the pain I feel in the present. For the dull ache and blurred wash that will constitute what is left of her beneath the march of ordinary time.

But time, though relentless, is not heartless: it has an unexpected present of blood for me. I’m four months pregnant when she dies. When my son is born he cries; the blood-yarn loops and the wind blows, and I see my daughter between my legs. They wrap him and hand him to me. I look down and see my son, I whisper his name; then the needles purl again and I’m with her. It is the ultimate time-traveling gris-gris, this baby in the present that looks and sounds and smells like that baby in the past. I cry two kinds of tears in an endless round robin: gratitude for the visceral experience of holding her again, guilt for letting the past in to obliterate the here and now of him.

Time passes, ordinary time, and the ephemeral weave of blood and voodoo dissolves in its impalpable wind. When I look at my son, I see only him. One morning, standing in the kitchen, drying the forks and plates, I look out and see the year’s first daffodils. I search for the voodoo bottle I sent forward in time fifteen months ago and find only a fine powder, dark like dried blood, its contents long vanished. I have forgotten the way she smells. It is the first of many things I will forget as my heart heals, sealing away the long, ropy strands of voodoo blood.

But time is not heartless: the seal is not perfect.

My son turns four, and I am there among the cake-smeared faces when his preschool teacher—innocent, uninformed—reads the day’s story. Sally said to her mother, I’m feeling quite ill. Mother said, to the doctor! He’ll give you a pill. But Doc said, to the hospital, and quick, on the double! That thing—and he pointed—is awfully big trouble. A strand of blood coils into the hand I have pressed to my heart; time’s wind lifts the ends of my hair.

I lean in and breathe deeply of my son until the wind fades. I hold on to the rope of blood a little longer, until it’s time to leave. It bobs gently against my chest as we walk home hand in hand. By dinner it will have crumbled to dust.

There will be others.

Grayson Bray Morris is an American writer and translator living in the Netherlands. You can read more about her daughter’s battle with brain cancer at www.sadies-brain-tumor.org, or visit her website at www.graysonbraymorris.com.

Art by Zebi Damen

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Enveloped By Love

Posted on June 17, 2013 by CNF • Posted in Articles Page • Tagged cancer, foster care, loss, mother, motherhood • Leave a comment

By Melissa Hart

I found the seven mangled manila envelopes on my bookshelf; someone had recognized them—with their crude drawings of flowers and birds—as repositories for a devotion strong enough, no, interesting enough, to ward off a 5-year-old’s fear of losing her mother. I’d received the bizarre diagnosis, a cancerous lesion on my tongue, by cell phone at the playground. My first thought after stepping away from the swing-set and determining in quiet hysteria that I wasn’t going to die: Would my daughter survive?

Maia had already been through a lot. Her biological mother relinquished her to the state at birth. Her foster mom cared for four infants synonymously. Our daughter finally knew focused attention and affection when my husband, Jonathan, and I brought her home at 18 months.

“I don’t want her traumatized,” I told Jon when oral surgeons informed me I’d be a week in a hospital, encumbered by a feeding tube and trach, unable to talk after they’d excised a piece of my tongue and replaced it with tissue and muscle from my wrist. “No one tells Maia. I don’t want her scared.”

I, myself, felt petrified. Tongue cancer, my surgeon explained, is affecting more and more middle-aged women like me who’ve never smoked and who limit their alcohol to a few glasses of red wine a week. It’s sometimes linked to the Human papillomavirus, but I tested negative. “You’re an anomaly,” the doctor concluded and snapped pictures of my poor besieged tongue while my husband distracted our daughter in the waiting room with Superwhy on his iPad.

At home, after a four-mile run to remind myself that no one had offered me a death sentence, I called in sick to work and baked muffins—zucchini and chocolate chip, sweet potato and peanut butter—more muffins than Maia could eat in my absence. And I bought the manila envelopes, one for each day of my hospitalization.

I’d been away from my daughter before. At conferences, I’m gone for days. But a week in the hospital felt dangerous. People die under anesthesia; they expire from infection. “She’s already lost two mothers,” I wailed to my husband on the couch at midnight. “What if she loses a third?”

He allowed gently that I might be veering into drama queen territory. “People have surgery all the time. I’ve had six, myself.”

“Yes, but . . .”

It wasn’t just the surgery that frightened me—we knew that. I’d received the dreaded diagnosis, the C-word forever linked with my name in medical records, and though doctors termed it Stage I, who knew what they’d find once anesthesia bore me under and they could go poking around.

To calm myself, I focused on creating care packages for Maia. I borrowed her markers and decorated each envelope with a drawing. Then, I bought seven picture books. One each went into the envelopes along with a tiny box of Junior Mints, a Tootsie Pop, a gold-foil wrapped chocolate heart.

I’d bought seven postcards at the bookstore, each with a picture of a cat or dog or pig in some comic pose. “Mommy loves Maia,” I wrote over and over, hoping—if disease spirited me away from this earth—that the repetition would burn itself into her brain, assuring her that she was a child adored.

For levity, I added toys: Slinky, kazoo, pipe cleaners to bend into animals. The night Jon and I headed for Portland to keep our 5:30 AM date with surgeons, I read Maia bedtime stories and handed my mother the envelopes with firm instructions. “Put one a day on the doorstep.”

For days, post-surgery, I lay in a fog and pictured Maia running up the porch steps to discover her care package. The image cheered me, inspiring me up and out of the ridiculous hospital gown. The moment I could swallow a sip of water, I demanded that surgeons remove the feeding tube from my nose, yank out the trach, and allow me to quit the hospital.

“Drive faster!” I urged Jon home, preparing myself for Maia at the door tear-stained or red-faced with rage. Would she hate me for falling victim to a random diagnosis I’d done nothing to deserve? Or would my gifts redeem me?

A Welcome Home drawing greeted us at door, but Maia herself wasn’t there. Through morphine’s blue haze, I saw the silly postcards on the mantle. The kazoo lay in a corner; picture books peeked out from under couch cushions. A pipe cleaner horse gripped one lamp.

“Where’s Maia?” Tongue throbbing, I scrawled on my whiteboard, bewildered. “Is she scared of me?”

Jon stroked my head. “It’s okay—your mom’s gone to get her from school.”

I collapsed on the couch, longing for our meeting, dreading it.

We can’t keep our children from life—I know that. Accidents happen and cells divide and our babies must deal with reality sooner than we’d like. All we can do is try, creatively, to lessen their fear. And here’s the surprise—in helping them, we sometimes teach them to help us, as well.

Maia ran inside that afternoon and pressed her forehead against mine with shocking tenderness. Her brown eyes looked into mine. “You’re back!” she said, as if I’d gone to the market for bananas. I saw then that my surgery was but a blip in our life together, akin to the toothpick arrow stuck into a ring in the cross-section of an oak on our favorite hiking trail.

“Mommy…” My child didn’t recoil at the bulky blue splint on my arm, at the bandages on my throat; she didn’t question my inability to speak. Instead, she pulled the books out from under the couch cushions, sat down beside me, and tucked a blanket around my feet. “Let me read you a story.”

Melissa Hart is the author of the memoir Gringa: A Contradictory Girlhood (Seal, 2009). She teaches at the School of Journalism and Communication, University of Oregon.

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Photo credit: Jonathan B. Smith

How People React To My Son’s Chemo-Baldness

Posted on June 11, 2013 by CNF • Posted in Blog • Tagged baldness, cancer, chemotherapy, childhood cancer, emotions, motherhood, sons • 3 Comments

By Nicole Scobie

I hardly notice anymore that my son Elliot has no hair. I do notice people’s reactions when they see him, if we’re at a restaurant or a store, and his hat falls off, or he takes it off, since he doesn’t really care. Sometimes, there’s a double-take. I’m not always sure what people think. I guess, looking at him, you would know right away that he’s a cancer kid. Although you see a lot of kids with crew cuts and even shaved heads these days, he has those few little wisps of fur-like hairs that are the tell-tale signs of chemo treatment.

Every now and then the subject comes up when he’s around, but it doesn’t seem to bother him much. His first reaction to losing his hair was how funny it was that he looks like his dad now. I’m not sure Martin was ever so proud as that moment when Elliot saw his reflection and said in surprise, “Hey, I have almost no hair! I look like Papa!” then laughed and walked away. He has been relatively unaffected by the change in his looks. We’re careful, however, when the subject is mentioned and he’s around, to always say something positive about it. He’s only five-years-old, and not yet very aware of the importance people place on appearance, but he is at the age where he is starting to understand the meaning of “fitting in.”

Recently, a friend was visiting and mentioned that it looked like Elliot’s hair was growing back already (a temporary event since he’s still in chemo, sometimes it does seem to be sprouting up again like tiny weeds, then a week later he’s so bald his head shines). Both Martin and I chimed in with our automatic remarks, something like, “Yep, it’ll grow back at some point, but in the meantime, he’s so handsome with those big blue eyes.” Sometimes we talk about how nice a head shape he has, or how great his ears look. And it’s all true, too. We actually find him to be quite a good-looking kid. So we’re not lying or exaggerating his eye-beauty etc., it’s just a clever rebuttal, a re-direct.

But I actually don’t think the baldness issue is about looks, for most people. Even in the non-cancer world — you know, that world we all used to live in, going about our daily business naÃ¯vely thinking we were safe from … everything? Even in the non-cancer world I think any negative view of chemo-baldness is really an instinctive judgment about health, not beauty. People associate this type of baldness with being sick. And, to be fair, it is often a pretty accurate instinct. But the fact is, there are many times, despite those rotten cells causing trouble, when a person with cancer does not feel sick. At least not throw-up sick. Any of you out there by the way have levels or categories of sick? Like, throw-up-sick versus just lie-on-the-couch-too-tired-to-push-the-button-on-the-remote sick? Just curious, as I’m not the one with cancer in our home, I can’t judge for sure.

But since I do know that many times, a cancer-boy (or girl) does not feel very sick, we are sometimes out in public. Often I won’t take Elliot anywhere where there might be a lot of people, if the blood count is low. But other times, we do go to restaurants and stores, even the occasional playground if we’re feeling particularly invincible. And recently, that’s when I started to notice them. Well, the lack of them, actually. The others. The other baldies, like my son. I know the statistics: childhood cancer is quite rare, so bumping into another baldy while at the playground is probably unlikely. But adult cancer is really so common, comparatively … so where are you all? Before I hurt anyone’s feelings, I will get off my high horse and say right away, as I have told many people, that if what had happened to Elliot had happened to me I would be tempted to go into my room and hide under my blanket and come out two years later. On the other hand, if I could trade places with him and have this stupid cancer be in my kidney instead, I would do it in a heartbeat. But that’s not possible.

So we head out “into the world” today and I wonder where everyone is. I would love to bump into a bald person. Seriously. I mean, obviously, I am into balding men anyway, but man would I like to see a woman or man wearing a scarf or hat like Elliot. Or just nothing. A nude head, parading around proudly in public for all to see. Wow, would that ever make me happy.

But generally, we never do see other cancer-fighters out there. Until yesterday. When I spotted one. We were at the mall. It was raining out, and we got bored at home (just how many Legos does it take to build the Eiffel Tower, I will never know).

A woman came over and sat next to me on a bench near the kids playing area where Elliot was running around. She was wearing a long silk scarf beautifully wrapped around her head. She did look pale, and maybe a bit thin, but actually pretty good. I didn’t say anything, but was silently excited. How could I convey to her that I am also from “that world?” Damn my hair.

Elliot ran over to ask if we could get an ice cream. He was wearing the blue sunhat with the octopus on the front (by the way, the octopus must absolutely be placed at exactly the correct frontal position or a tearful crisis will ensue. Cancer reaction or normal five-year-old? Anyone?)

With his hat it’s hard to tell he’s bald. He stared blatantly at the woman. Then he turned to me and said, and I am sure he spoke at least 10 decibels above his normal voice volume: “Hey, she’s bald.” I started to feel a bit hot. The woman cleared her throat. She looked at him and smiled quietly. He took that as an opening for him to increase the volume by another 20 decibels or so and asked her, “How come YOU have no hair?”

Now, I knew why he’s asking. He wanted to chat with her about baldness the way he would otherwise chat with a friend about Playmobil. Baldness is familiar to him. If she had a visible scar he would have probably happily lifted his shirt up to show the one that stretches across his abdomen.

But the woman didn’t know that, she just probably thought he was another innocent five-year-old asking an innocent question, and in a show of remarkable patience and probably practice she calmly said, “Well, I have to take medicine that made my hair fall out. But it will grow back after a while.” Then she slowly got up to go while Elliot stared at her with his “duh … I knew THAT” look.

And just as she started to walk away he called after her. “Well it’s good that you have nice eyes!” And she turned and stared at him a bit.

I love him.

Nicole Scobie, mom to three great kids, one of whom is luckily in remission from stage 4 cancer of the kidney.

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Ben Will Be Two

Posted on April 8, 2013 by CNF • Posted in Articles Page • Tagged Abbe Walter, cancer, doctor, fear, leukemia, toddler • Leave a comment

By Abbe Walter

Ben will be 2 in two weeks. He is walking around the house with a book that sings the nursery rhyme “Rock-a-bye baby” when you open it. A different line sung for each page turned. He never keeps it open past the first page. Open, shut, open shut, open, shut. Rock-a-bye-baby! Rock-a-bye-baby! Rock-a-bye-baby! My 3-month-old Jake is napping in his crib and the August sun is pouring in thick like butter through the living room windows. At 9:00 a.m. sharp the phone rings. My stomach drops. My husband Brian looks at me from the next room. I take a deep breath and say hello, meeting Brian’s eyes. Brian immediately picks up the other extension in time to hear Dr. Khan ask me if someone is there with me, and me saying yes. “OK, good,” Dr. Khan says. “I’m so sorry but the blood tests we did yesterday, well, it looks like Ben has cancer, most likely leukemia.“

Brian drops the phone and collapses against the living room wall onto the floor crying, instantly, gasping for breath. I can hear him in stereo, through the phone and through the house. Dr. Khan says I can hear you are not alone, that is good. (Brian later tells me his first thought was that Ben was going to die. For some reason, death did not enter my mind at that moment though it certainly haunted me so many times in the years that followed.) I have no thoughts or feelings and I do not shed a tear. I am aware that I am not crying, but I don’t know why, and I quickly think that I should be crying. But I am not. I am numb, floating above myself, watching from somewhere else, hearing Dr. Khan speak, not understanding, not absorbing. Yet I realize that I am asking questions about how to proceed. Where do we go? What do we do?

I am staring at Ben, who is walking around with his book. Rock-a-bye baby! Rock-a-bye-baby! Rock-a-bye-baby!

One of us calls our parents, I don’t recall whom. Brian’s parents will come to our house to watch Jake and my dad will meet us at the hospital. Brian’s parents arrive; everyone is hugging each other except for me. They are hugging me. I am not hugging. They are all crying. I am not crying. I am staring at Ben. I am imploding.

By 10:30 a.m. Ben is admitted to New York University Medical Center. Ben needs to have an IV put in. I don’t understand why he needs an IV and I’m afraid it will hurt him. They take us into a small room. No windows. Ben is sitting on my lap and I am holding him and kissing the top of his head. Brian is standing next to us, his hand on my shoulder, a hand on Ben. A doctor attempts to access a vein. Ben screams. Tears spring from Ben’s eyes, from my eyes. The doctor shakes her head and says, it didn’t work, let’s try again. She tries again, shakes her head again and says shoot. I ask what’s wrong. She explains how his veins are so tiny and so fragile. The veins often collapse. It can be tricky, she says. I ask if there’s anyone else who can try.

At 11:30 a.m. there have been so many pokes and so many collapses, so much screaming and so much crying, that I am certain Ben, Brian and I have all been permanently punctured. Now there is a small army of doctors and nurses in the small room and I am incredibly hot. Sweating. By now, the room is totally dark except for Ben’s beautiful little arm, glowing translucent red with tiny blue veins, magically illuminated by a special light they brought in, and the fluorescent glow of the fish tank against the wall, meant to be calming, soothing, relaxing, distracting.

I want to smash my head right through that tank and scream. I want to crawl out of my skin. I want this to stop. Rewind. I want them to leave my baby alone. I ask again if the IV is really necessary right now, and everyone looks at me, some sadly smiling. By now it’s all been explained to us more than a few times by more than a few doctors. Your son has leukemia. He needs to start chemo today. First step is the IV. We need to get started. There is no choice.

I recoil at the thought. I don’t want them to put that poison inside my beautiful, perfect, innocent baby boy. I am sick with worry about the effects the chemo will have on his young body and his developing brain, the effect this experience will have on his life. What had been his life. What his life is supposed to be. What his life was supposed to have been. I am struck with the realization that life is forever changing right now. Now. That they are stealing my son from me in order to save him and he will never be the same and there’s absolutely nothing I can do about it. There is no choice.

Ben is once again struggling against the looming IV needle and a team of nurses, doctors and techs are holding him down. My jaw is clenched and my blood is racing, heart deflating. Another poke. Another scream. Another collapse.

“No more, mama,” Ben says.

I need this to stop. I am yelling at the doctors and nurses to just get someone, an expert, someone who can successfully access my baby’s veins and just get this done.

I need this to stop. Can’t somebody just do this?

I have lost track of time in that small, dark room. Ben has stopped struggling. He is limp, damp, staring deeply into my eyes with his big baby blues. His strawberry blond hair clings to his forehead. I cling to his small, chubby hand. My mouth is so dry. I want to say I am sorry to him but I cannot speak. My tongue sticks to the roof of my mouth. I am desiccated.

A short while later the doctors and nurses finally get the IV in, and they cheer, happy and triumphant, smiling at us, as if we feel the exact same way.

Author note: Ben will be twelve. He is almost as tall as me, is sweet as sugar, laughs the loudest laugh and still has the most beautiful blue eyes in the world. Ben was diagnosed with acute lymphoblastic leukemia over 9 years ago. He was treated for 3 years and 2 months, and is considered cured. I know that childhood cancer is one of those dark fears nobody really wants to think about. I understand you. This essay was written as an invitation to take just a peek. Maybe understand those of us who have gone through it. And those who still are fighting the fight.

About the Author: Abbe Walter lives with her husband and four children in Connecticut, where she also works and writes. She is a practicing clinical psychologist who has been published in various scientific journals. This essay is her first non-academic publication.

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Message in a Lunchbox

Posted on March 25, 2013 by CNF • Posted in Articles Page • Tagged affection, brain tumor, cancer, dying, letters, mourning, Suzanne Leigh • Leave a comment

By Suzanne Leigh

Months before my elder daughter was diagnosed with a malignant brain tumor, I started leaving brief handwritten notes at the bottom of her lunchbox. “I love you, Sweetheart, and I can’t wait to see you after school!”

When I retrieved her lunchbox after school, the note remained seemingly untouched along with remnants of a sandwich, tangerine peel and uneaten baby carrots. My lusty 7-year-old was in too much of a hurry to eat her lunch and join her friends for tag or tetherball than to respond to a message from mom.

Periodically I continued the lunchbox notes. Someday, I told myself, Natasha would grow up and remember those tender messages.

At age 10, when Natasha’s brain tumor had started to metastasize and her prognosis was very poor, she started to respond to my lunchbox messages. “I love you SO much and I miss you so much. You are my best friend,” she wrote on the back of my own message to her.

Her message was painful in its poignancy. I knew her closeness to me correlated to the severity of her diagnosis. In the last two years of her life while her healthy peers would accept a perfunctory kiss at best at school pick-up time, Natasha would put both arms around my neck. While they campaigned for weekend slumber parties with BFFs and mom-free time at the mall, my fragile child always wanted her parents close by.

At the same time, Natasha started writing letters to her parents, younger sister and other loved ones. These were prolific fervent declarations of devotion, often accompanied by moody watercolors of rainbows, angels, vivid pastels of wild animals or warm family portraits with dad’s arms encircling the three of us. In hindsight those letter and pictures were her way of telling us that she knew her life was limited and she was grateful to those that she loved.

A week after Natasha had passed away, I realized that I had never written her a letter. It was overdue. I wrote of emotions that were too intense, too cumbersome for her to have heard when she was alive. I told her about the day she was born when I had placed my cheek on her soft head and whispered: My heart beats for you, Natasha. I told her that I had never experienced real fear until I had become her mother. (Sure I had been scared, but ultimately the worst that could happen was that I would die. As a mother, losing that precious new life incited far greater fear.)

I told her that I’d have done anything, anything to have saved her life. That I had wished so hard that the brain tumor bullet had hit me, instead of her; that my own rude health disgusted rather than delighted me.

And I told her that she had taught me to love without limits and that my infinite love for her would carry me through the rest of my life.

I placed the letter in a drawer where I keep her mementos. Inside is a manila envelope containing the golden brown wavy hair she had lost following full brain radiation. In another envelope is the blonde hair she’d lost two years previously due to chemo.

At times I am drawn magnetically to these two envelopes; their contents cause anguish, but they are a tangible part of her that I get to keep.

Deeper in this drawer are other emblems of her life: her letter to Santa (“Please may I have an American Girl doll for Christmas. I hope you are doing well and are not too cold”). And a letter to the tooth fairy requesting that she wake her up so they can talk. There are journal entries recounting happy carefree times, princess birthday parties, trick or treating and beach vacations with friends.

As I mourn Natasha, I am learning that when the pain is acute, I need to focus on those items at the bottom of the drawer. They reflect the time before we entered Cancerland and the all-too-short period before she recurred, when the word “cure” would be tentatively mentioned. I need to remember that while her brief life is defined by disease, it is also defined by joy and innocence.

My surviving daughter is 8. A year ago, I started to leave messages in lunchbox. “I hope you are having a good time,” I wrote. “I can’t wait to see you after school.”

When I picked up Marissa, the message was still there, along with the detritus of her lunch. “Did you read my message?” I asked. “Yes, but I was too busy to reply.”

I hope that my surviving child with her pink cheeks and flawless health history will always be too busy to reply to the messages in her lunchbox.

Suzanne Leigh is a freelance writer and blogger. See more of her work at
www.themourningafternatasha.wordpress.com

Seasons

Posted on January 11, 2013 by CNF • Posted in Articles Page • Tagged cancer, death, Lindsey Mead, loss, memories, mother and daughter, seasons • Leave a comment

A short story by Lindsey Mead

The sky is at its most intense, deep blue, before it fades to blackness; autumn’s leaves are stunning in their doomed shades of red and orange and yellow, before they crumple to uniform brown and fall to the frozen ground. So many things are at their most beautiful just before they die: the last gasp of beauty.

I thought about this a lot as I witnessed my mother’s fleeting, ethereal beauty leading up to her death in the last weeks of winter. She was so gentle, so strong, so prepared; she took me away from my terror, my loneliness, my despair. It was as if the entirety of her fierce spirit surfaced during her last days; her fragile skin was so transparent it seemed to reveal not only her deep blue veins but also the fullness of her heart.

Driving through Harvard Square, the muddy tired snow reminds me of those long days, two winters ago, in the room with the medicine-saturated air, lit by the clear winter light that poured into the room only during the coldest season, when the tall trees surrounding our Victorian house were barren and skeletal. I reach down to change gears but the stick shift is stuck; this car is so old, dammit. I have to take both hands off the wheel and use my full weight to shift to fourth gear.

****

“Lizzie, come on, you can do it! Relax and ease the pedals past each other. It’s really easy; it’s just the balance you have to get right.” In my memory, my mother smiles calmly at me, acknowledging the tears of frustration in my eyes. I take a deep breath, wipe a summer-browned arm across my forehead, turn the key in the ignition again. I can’t get the damn thing into first gear. I keep on stalling and jumping forward. It feels like my mother and I are riding a bucking rodeo horse. I know she doesn’t want to be here, teaching me to drive. This is her vacation, too, and she would rather be on the beach with her best friend than in a beat-up Jeep that smells like mold in a deserted high school parking lot. I feel so American and so teenaged, learning how to drive. It is such a clichéd rite of passage, yet I am angry and impatient, annoyed that I cannot figure this stupid thing out.

My mother is patient, but she cannot quite describe what I’m doing wrong. It reminds me of when she used to try to help me with basic French grammar. Her fluency removed her from the introductory stuff just as her instinctive comfort at the wheel is difficult to break down into steps I can actually practice and follow.

****

Mum died two years ago; everything reminds me of her. I cannot go through an hour without being drenched by a waterfall of memories. I am waiting for that moment, that day, when I can be happy with my memories and smile about them; I know that is what Mum wanted (wants?). She always told me she wanted to be remembered with laughter, during our many long late-night talks, over big mugs of herbal tea (she’d choose ginger tea – I hated it, it made my tongue numb), or, in the summer, over tall glasses of iced tea. Mum had a million friends; she was the most popular person I have ever known. But in the family, it was just the two of us. Dad left us when I was five years old, and I never really remembered him. He traveled a lot. His final departure wasn’t that much different from the others, except that he never came back, sweaty and cranky and demanding. Mum’s parents have been dead for a long time, I never knew them, and she didn’t have any siblings. Luckily for both of us there was enough money in the Chase family that Mum could work with the political activist groups she loved so much without worrying about putting me through college. We lived comfortably. We had a summer house by Buzzards Bay where I learned to sail, and an old Victorian house in Cambridge.

******

Mum was a national sailing champion in college. She also played bridge for money, earning her train fare for weekends visiting her brother at Amherst , where they would drink bourbon at his fraternity. Mum was a huge person contained in a regular-sized body. Of her many passions, sailing was the most essential. She instilled it in me. When I was very little she and I would go out into Buzzards Bay in the Laser or the Sunfish or, for longer sails, the J24. By the time I was eight I was sailing by myself. I understood the balance between boat and sail, wind and water. Mum taught me racing strategy, explaining what it was to steal someone else’s wind during a race. She told me that I should try to do it as infrequently as possible because it wasn’t “nice,” though she knew full well that I would eventually have to steal wind in order to win races.

And I did win, early and often. My trophies – silver bowls that Mum liked to use for fruit, engraved cups, and models of sailboats – began to crowd hers on the mahogany mantelpiece in our living room in Cambridge. I didn’t understand why Mum always had tears in her eyes when I raced up the dock to her after a race, ripping off my sailing gloves, untying the harness that helped me hike out over the edge of the boat, holding my blue first-place pennant and bubbling over with questions about the race, how I did, how I could have done better, gone faster.

Adolescence brought me to a more profound understanding of sailing and what it meant to my mother. When I sailed by myself (one of my favorite things to do during the long sunny days of summer) I would feel my mother’s hands in my grip on the mainsheet and look through her eyes as I gauged the wind direction. When my toes squeaked against the centerboard case I remembered how I’d giggle when hers made the same noise so many years ago, when I sat in the bottom of the cockpit of the boat and played with the bailer as she sailed. I would lean back and trail my long red hair, so much like my mother’s, in the dark green ocean just as she had taught me to do.

********

When I was fifteen, about five years ago, Mum mentioned to me that, in the distant future, when she died, she wanted to be cremated. She told me that she wanted me to sprinkle her ashes in the ocean and read “Sea Fever” by John Masefield (“I must go down to the seas again, to the lonely sea and the sky…”) as I did it. I laughed, but her face was serious, and she told me solemnly that she really meant it. It was early in April two years ago that I drove to Buzzards Bay with the ornate urn buckled into the seat next to me. I couldn’t stop thinking about how much my mother would have hated the fussy, formal urn – I had picked the plainest, simplest one the funeral home offered, and it was still far too gaudy. I almost laughed through my tears when I thought about how she still had her seatbelt on while I drove: even in death she wasn’t confident of my driving. I realized these were our last moments of CQT, as we used to call our Car Quality Time, the intimate, meandering talks we’d have during long rides.

*******

“Mum? Um … may I have some more tea?” I am hedging, indicating the black and white cow-shaped teapot that my mother loves. She also has a pitcher that looks like it’s made out of stalks of asparagus that she adores. Random stuff clutters the kitchen. We never had a neatly matching set of plates or any policy for what was used when. The family silver came out for everyday breakfast and was most often used with the chipped earthenware plates that she had brought back from a trip to Paris years ago. Mum reaches out to the pot and pours more tea.

“Yes, yes, everything is fine. I don’t know, Mum, here’s something I want to tell you,” I chew on my thumbnail and then catch myself, pull my hand out of my mouth and start to toy with the handle of my mug instead.

“What, Liz?” Mum is distracted, looking out of the kitchen window into the night. She does that a lot; I always wonder what she looks at and I asked her once. She told me she just liked to see how black it got outside and to ponder how complete a blanket night could be.

“Well, it’s about Chris. Something that happened …” I look down and concentrate on my bitten fingernails, feeling my face flame with redness.

“Mm-hmm?” Mum isn’t really paying attention to me.

“Well, we slept together, Mum, and I, ahhhh—I guess I just wanted you to know, okay?” I stutter while talking, and finally, I force myself to look up into her eyes. She is looking at me at last. I am nervous about her reaction and also having a weird, vivid flashback to the day I told her I got my period. I’d been similarly nervous, and she had thrown her arms around me and started to cry, whispering, “Welcome!” Her reaction had touched and embarrassed me at the same time. I waited to see what she would say now. I have wanted to tell her since it happened last weekend, but we haven’t really had a chance. She’s been so busy at work.

“Liz, you know what? I know. I could just tell. I do know you pretty well. I know that you love him. And I think that he loves you. And I think that’s wonderful! What was it like?” Her final question kind of creeps me out, but I feel I have no choice but to answer it. “Well, it was okay… I mean, it hurt and all, but I’m glad. I mean I just feel really close to him and we talk about it all the time, which is good, I guess, and I am really happy about it because I do really love him…” I stop myself because I know I am babbling. I am so relieved to have finally told her.

“I’m not going to give you a lot of stuff about being careful because I know you’re a big girl, Lizzie.” Mum has always talked to me like a grownup. I think it’s a result of it being just the two of us for so long. “But if you do have questions, feel free to ask them, I’m here. And I’ve been there.” She smiles at me, and when she does, all her wisdom and love and understanding seem to flow across the table from her brown eyes, the same shade as mine, directly to me. I am moved, but I stare hard into the bottom of my cup and concentrate on the brownish murky swirls at the bottom of the tea, holding back tears.

********

About three weeks after that talk Mum went to the doctor because she found a lump in her breast in the shower. She was swept into a whirlwind of mammograms and biopsies, and it was quickly confirmed that she had Stage IV breast cancer. It had spread to her lungs.

My mother went haywire. She had never been sick a day in her life. She had walked around for 10 days with a fractured tibia before finally conceding to an x-ray. The day she was given the final diagnosis, she had gone to the appointment alone, refusing to let me skip school to join her. I think she was guided by some impulse to shield me from what she intuitively knew would be bad news. When she got home she marched through the front door of our house, threw her pocketbook into the corner of the entrance hall, and walked directly to the liquor cabinet. I was sitting in the big rickety rocking chair, studying SAT words, and I looked up when I heard the door slam. Mum poured herself a big glass of scotch and downed it fast. I was nervous: Mum never drank.

“Lizzie. I’m dying. I have cancer. Why didn’t I do that stupid self-exam more often? I have cancer. This kind of thing doesn’t happen to me, I just read about it. I have cancer. I have cancer. Do you think I’m going to get used to saying that?” She sat down heavily and began to cry. I was stunned; I shut my thick book with a thump, feeling irrational irritation at its laminated, brightly colored cover. I stood up slowly and walked awkwardly over to my mother’s heaving shoulders.

“What did Dr. Goldman say? What happened?”

“Yeah, it’s cancer. So much for that ‘one in ten lumps is malignant’ crap. So much for ‘you’re still young.’ I guess 42 isn’t that young anymore. Oh, Lizzie, why? Why? What did I do?” She started to wail and got up and poured herself another scotch; her hand shook as she sloshed the brown liquid into her glass and some spilled onto the dark wood table.

From this point my memories blur; the following months are hazy and ragged at the edges, in distinct contrast to that afternoon whose details will always be crystalline in my memory. I could draw the cover of that SAT book in perfect detail. After that, I remember Mum started to drink more. She withdrew from her friends and her work and from me and simply sat around all day, staring out of the window at the fall. It was a spectacular fall, I do remember that, and Mum seemed to spend all day long looking out of the bay windows of our house at the trees as their leaves changed. I recall wondering if she ever actually saw them. She never said anything. The house was choked with silence.

I kept going to school, going through my days with mechanical motions. Chris and I broke up because I was so distracted, so preoccupied. I didn’t even notice that he was gone from my life. For a while Mum stopped talking to me at all; she was completely silent for three weeks. I spent a lot of time at the houses of a couple of close friends. I became really angry. In fact, my anger sort of excited me; I thought if I could synthesize enough anger, then I could cancel out and erase my grief and terror. I fed on my anger, making myself madder and madder until I was so angry that I didn’t think I cared about Mum at all. That she was dying became some kind of twisted relief. In my fury I told myself I was looking forward to the day she was gone. To the day the silence and anger would finally dissipate. October and November passed in a monochromatic, echoing quiet blur.

*****

This has become a familiar scene: I open the fridge door, pull out two chicken breasts, cream, and mushrooms, slam the door. Our fridge is old, and the door doesn’t shut without a lot of force, so there’s a lot of slamming in the kitchen. I find a wooden chopping board and start to slice the mushrooms with precision, concentrating. Slice, chop, wipe off the blade. Slice, chop, wipe off the blade. The sensation of steel slicing through the soft firmness of the mushrooms is oddly soothing. The gray-brown spade-shaped slivers form reassuringly regular rows on the edge of the chopping board. Mum wanders into the room, glass in hand, and sits down at the kitchen table, watching me. I put a pan on the stove and melt some butter into it; I watch the bubbles and hear them sizzling before tossing the chicken and mushrooms into the pan. I wait for them to brown in the heat. When I add the cream I stir it around and it turns from thick white to thinner brown-gold. I turn off the stove with the same soft click I’ve heard every day since birth and slop the chicken breasts onto two plates. Balancing the plates on my right arm like a waiter I pull open a drawer and grab two knives and two forks. I sit across from Mum and slide her plate and silverware across the wooden surface.

“Lizzie…” Mum whispers, keeping her head bowed, focusing down as she toys with the prongs of her fork. She is gripping the thing so tightly that her knuckles are going white around the edges. I notice her cuticles are ragged and bloody; she has always bitten her nails, preferring them short to “those tacky talons,” but they have never looked so destroyed. I refuse to answer her and look instead directly at her forehead, my gaze so full of resentment and anger I feel as though I could burn a hole through her dry papery skin.

She pulls her head up slowly, as though it’s heavy, and meets my gaze tentatively. Immediately her eyes drop again when she sees the expression on my face, my clenched jaw and pursed lips. “I’m sorry. I don’t know…” her voice is so quiet, like the rustle of dried leaves. My mind flies wildly to a memory of us raking leaves when I was a child, of jumping into a pile of them, of being surprised by the damp sogginess under the crispy brown top layer.

My feelings threaten to overflow my body. The last months have been so controlled as I deliberately constructed fences around my fear. These barricades come bursting open now, and my pain is alive, terrifying in its immediacy and power. I feel like a woman suddenly. I feel like my mother’s peer for the first time. Looking into her eyes I see how scared she is, how sad, how much she needs me. I am overwhelmed with these revelations, by the crushing, instant knowledge that my mother is a person, too, with needs and fears. I push my chair back roughly and run around the table to her side. I kneel on the floor beside her chair and throw my arms around her neck, sobbing into her chest, between her diseased breasts, the breasts that kept me alive in the first months of my life and that are killing my mother in the last months of hers.

Author’s Note: I wrote the first draft of this story before I had children at all. When I revisited it a few years later I was frankly astonished by the themes I had touched on, perhaps subconsciously. I am fortunate to live a mile away from my mother, and to regularly watch her interact with my 10-year old daughter. The way the generations ripple and echo fascinates me. My mother’s closest friend, who was a kind of second mother to me, passed away when she was 49, and her death is very present in this story also.

About the Author: Lindsey Mead is a mother, writer, and headhunter who lives in Cambridge, Massachusetts with her husband, daughter, and son. A childhood spent moving around the world left her with a contradictory combination of restlessness and a deep craving for stability. She graduated from Princeton with a degree in English and has an MBA from Harvard, and is currently eschewing her peripatetic childhood by having lived in the same house for 11 years. Her writing has been anthologized and published in a variety of print and on-line sources including Torn: True Stories of Kids, Careers, and the Conflict of Modern Motherhood, So Long: Short Narratives of Loss and Remembrance, the Princeton Alumni Weekly, Literary Mama, and others. She writes daily at A Design So Vast.

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