The Bittersweet of Motherhood After Loss

Posted on September 27, 2016 by CNF • Posted in Blog, Brain, Child, Featured Blog Posts, Slider Content • Tagged baby death, death, Kathleen Sullivan, mother, son • Leave a comment

By Kathleen Sullivan

“You know when you’re in the moment, and things seem perfect, until you realize your life will never be?”

No, I didn’t understand. Yet. My husband Brian and I were at our first bereavement support meeting. We had just lost our firstborn son Liam to a congenital heart defect. He was nine days old.

The woman — I forget her name — continued on. She told us about the contentment of watching her two children laughing and playing with their father. However, there was a crucial piece missing: the daughter she lost.

Back then, I couldn’t even think about the process of having additional children. Honestly, I thought our lives were completely over. I wanted to die.

That was eight years ago. Today, I spend most of my time chasing the two children that I was eventually blessed with. I get it now. The woman was absolutely right.

My living children bring me great joy. In many ways, they saved my life.

My daughter, who arrived first, was born thirteen months after Liam’s death. She gave me something to focus on besides my own grief.

It wasn’t over, though. I was still angry. I was bitter. I couldn’t face seeing another red haired little boy. I cringed when I heard another mom call after her Liam. I was resentful of friends and family who had living children. It was unfair. It always would be.

I still cry. However, my Julia and Owen keep me laughing too.

Almost eight years ago.

In some ways it feels like yesterday. In others, it feels as if a lifetime has passed.

I am noticing that family and friends don’t speak of Liam much anymore. Eight years ago, if I had asked our parents how many grandchildren they had, they would have definitely included Liam as part of the troop.

Would they do the same today?

I have been writing about loss for several years now. I was told early on that the pain would “soften”. Although I didn’t believe it at the time, I do now.

That doesn’t mean that the pain is not present everyday in some form.

That doesn’t mean that I don’t break into sobs from time to time.

In fact, I did so last week. I came across Liam’s death certificate. I couldn’t stop staring at the time of death.

His death.

My son died.

In talking about my journey, I have sought to help others. I don’t know what I would have done without the support of some special friends early on.

I call these amazing people “the friends I wish I had never met.” Losing our children is what brought us together.

As I sit here writing, my two living children are tired and content. It was a great day. We went to the movies and had ice cream.

Regardless, I did feel it.

The missing piece.

The heavy burden that I carry every day.

The guilt.

A therapist once told me that it was okay to have some sadness, yet still celebrate happiness. I didn’t believe her then, but it is true. Emotions are strange that way.

Mostly, I am happy for my living children. They did nothing wrong and our tragedy should not take away from their joy.

Not to say that I don’t have to fake it sometimes. I have become very good at forcing a smile.

As my children are getting older, they are starting to ask questions. We also try to go to the cemetery when we can.

They are fully aware that they had a big brother and his heart didn’t work well. My six-year-old tells me that makes her sad.

I see her sadness. I also see her happiness. She experiences both, just like my therapist told me.

As parents, my husband and I will never “have it all.”

Recently, a family member gifted me with a special bracelet. It was a “penny from heaven” and had Liam’s name and birth. I wear it every day.

The token brought me joy, comfort and sadness. I can’t carry Liam physically, but I can carry him in my heart.

I promised him that I would. I promised him that I always will.

For Liam, my heart will always ache.

Still, because of Liam, Julia and Owen my heart will always be full.

And I couldn’t ask for anything more.

Kathleen’s work has appeared on: The Huffington Post, Scary Mommy, Club Mid, Mamalode, Parentco., and Your Tango.
I am also the creator of the blog: www.threekidsonehusbandandabottleofwine.com

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Don’t Talk to Strangers…Well, Sometimes Talk To Strangers

Posted on September 22, 2016 by CNF • Posted in Blog, Brain, Child, Featured Blog Posts, Slider Content • Tagged 4-year-old, books, By B.J. Hollars, father, father son, son, strangers • Leave a comment

By B.J. Hollars

It was a weekend we’d always remember—that’s how I billed it at least. Henry, my four-year-old, was willing to give me the benefit of the doubt. This was to be our first father-son getaway, and since I’d been invited to give a couple of readings at a local book festival, we had our destination picked out for us: Appleton, Wisconsin—the Las Vegas of Appleton, Wisconsin.

Prior to our journey, Henry had spent much of the week prepping to serve as my dutiful bookseller, and while that scenario provided us no shortage of valuable math lessons, unfortunately for him, my books did not sell at a cost of three apples take away two.

Eventually I broke the news that someone else would be selling the books—someone with a calculator, not a fruit basket—which, judging by the look on Henry’s face, was a betrayal of Judas proportions.

“But hey, you can help me work the crowd,” I’d been quick to reply. “Help me talk to strangers.”

To a well-trained, oft-lectured four-year-old, my encouragement to “talk to strangers” had seemed like a trap.

“But…what if the strangers are bad guys?”

“Well, what I meant is…”

What followed was a 25-minute lecture outlining the many “do’s” and “don’ts” of stranger-talking, a conversation that surely obfuscated the issue beyond repair.

“You should talk to nice strangers,” I found myself saying mid-lecture, though when he called me out (“How do you know a nice stranger from a not-nice one?”) I frantically backpedaled: “Ok, let’s just go with never talk to strangers.”

But that afternoon we did. Following the first reading, Henry and I drove to the nearby city of Neenah where we stumbled upon a lighthouse on the shores of Lake Winnebago. There, we waved to strangers, smiled to strangers, struck up conversations with every nice stranger we passed. After all, it was a beautiful day and we had to tell somebody; who better than a stranger?

Later, we found ourselves in a glass museum, and since admission was free (and I wanted to keep the docent on his toes), I unleashed my four-year-old amid the exhibitions, a bold move that served as the impetus for further conversations with strangers. “Does he have a history of breaking glass?” the docent inquired. “Nah,” I replied, thinking: but maybe a future.

Much to the delight of the docent, we left that museum just as we found it, then burned off as many of the wiggles as we could in the playground across the street. We’d only been there for a few minutes before a six-year-old stranger pushed Henry on a swing, followed up soon after by a ten-year-old stranger committed to helping him climb the slide. To Henry, these strangers were hardly strangers—just kids like him lost in the throes of play.

From my place on a nearby bench, I began revising my stranger lecture. And then, once I figured I had it cracked, I revised it yet again.

How, I wondered, do you keep your kids safe without making them fear the world?

That afternoon I came to two conclusions: first, my guidelines for strangers was severely flawed (after all, isn’t everyone a stranger at the start?); and second, that’s okay. As a parent, I needn’t be a paragon of clarity, or an answer-filled oracle. Mostly, all I need to be is a guy willing to wade into the hard conversations, to go chest-deep into the muck of confusion and eventually find my way out.

Better still if we find our way out together.

That night in Appleton—long after the pizza and the root beer and the three swims in the pool—Henry and I venture into our hotel hallway with an ice bucket in tow. We look left, look right, but find no signs of the ice machine.

Midway through our search, we come across a middle-aged man wielding his own ice bucket.

“Any luck?” I ask the man.

“Nothing yet,” he says.

We split the territory, promising to find one another if our reconnaissance yields results.

Five minutes later our reconnaissance does, and after filling the bucket, Henry and I shift our mission to finding the middle-aged man.

We crisscross hallways, walk a few flights of stairs, shout into the echoing stairwells. Had I had them handy, I might’ve sent up signal flares but alas, on that night, we were flareless.

Since we never leave a man behind we don’t, and within ten minutes or so, we find our ice bucket brethren. I’m touched, I admit, that he hasn’t left us behind, either.

“It’s on the second floor,” I report to the man.

“Yup,” he nods simply.

After our extensive search we’d managed to find one another, though we’d paid our price in melted ice.

Henry and I reenter our room, at which point he immediately resumes jumping on the bed.

“We found our stranger!” he calls. “Yes!”

“That’s no stranger,” I say, dunking a cup into our bucket of water. “That’s our friend.”

B.J. Hollars is a Brain, Child contributing blogger. He the author of several books, most recently From the Mouths of Dogs: What Our Pets Teach Us About Life, Death, and Being Human, as well as a collection of essays, This Is Only A Test. He serves as the reviews editor for Pleiades, a mentor for Creative Nonfiction, and a professor at the University of Wisconsin-Eau Claire. For more, visit: http://www.bjhollars.com

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The Dance

Posted on May 10, 2016 by CNF • Posted in Blog, Brain, Child, Featured Blog Posts, Slider Content • Tagged 13-year-old, Allison Slater Tate, dance, mother, son • Leave a comment

By Allison Slater Tate

Though I think I have blocked most of middle school out of my consciousness in the interest of self preservation, I do still possess a few vivid memories 28 years later. Among the best: the night of one of our few middle school dances that fulfilled every excruciating promise of its kind, including boys on one side of the darkened, slightly gym and girls on the other, punch bowls and bad snacks, bored chaperones, and a distinct lack of actual dancing.

My neighbor’s dad brought us home, and I remember bursting into my bedroom, still decorated in the yellow gingham wallpaper of my childhood nursery, and throwing myself on my white wicker canopy bed, my cheeks flushed from the night’s excitement. My room was tiny, but I didn’t know it. My lavender, art deco style boom box sat on my dresser, and I turned on the radio and listened rapturously to the same songs that I had just heard at the dance: Bon Jovi’s “Livin’ on a Prayer,” Starship’s “Sara.” I was buzzing on a cocktail of hormones, friends, and the possibility of romance (Romance would not actually arrive in any real shape or form for another three years). I was a first child with no one to model, the owner of a mouth full of braces, a chest I didn’t know what to do with, and zits that befuddled me. I still carried the baby fat of adolescence.

There was nothing about me that wasn’t awkward. And still, I felt broken wide open, like anything was possible. Thirteen is not the easiest age, but it has its own magic.

I’ve lost the braces, but I still have a chest I never quite mastered, baby fat of a different nature, and, most maddeningly, the zits have returned, full force. I’m 41, and now my oldest child is 13. I never imagined when I was 13 that I would still be growing up, and yet, here I am, growing up alongside my child, both of us learning how to deal with chin hair at the same time.

From the day he was born, I have been anticipating this time: he’s coming into his own, growing into a body that has always seemed to fit him like his father’s shirts, filling out both physically and emotionally. He has opinions and a sense of humor and when he speaks, he makes cultural and literary allusions sometimes that make my heart leap out of my chest because I realize how much he is aware of now, how much he is in the world. He’s filling out his high school registration papers. He has middle school dances of his own.

He and I have our own awkward dance going on between us, too, because, frankly, I have absolutely no idea what I am doing. I have never parented a teenager before, and he has never been a teenager before. If there is anything I have learned in the past almost 14 years, it’s that every single child is different, so there’s really no book or set of instructions I can pore over and study and learn that will tell me exactly how to navigate his last four years at home. I have to wing it, and that feels a little like being 13 myself: broken wide open, like anything is possible.

That feels a little more terrifying from this vantage point.

So I worry about how much time he spends alone in his room, even though I know I did the same, because I miss him. I leave new books on the staircase where he might stumble over them, resigned to the knowledge that anything I recommend outright will be dismissed summarily. I yell up to him in the mornings to wake him up a minimum of three times, my tone and my threats growing fiercer each time, then seethe when he casually shuffles into the kitchen 15 minutes before we have to leave for school and settles in for a leisurely breakfast. I nag, he shrugs. I cajole, he demurs. Push, pull, back and forth, as we each struggle to lead and not to step on each other’s toes.

Sometimes we are really in sync, and I hate to even acknowledge it, because I’m afraid I will puncture some hole in the bubble and it will all crash to earth: he wants to spend time with us, or he tells me about his day at school in more than one sentence, or he texts me about a triumph over a particularly gnarly biology test. After volleyball practice, he and I swing through a local drive-thru and we talk about music or books or what he is analyzing in English class. I tried not to grin too hard when he recently mused, “I tend to like ’80s music the best. After all, it’s what I grew up on.” My work is done here, I thought with a mental fist pump.

Other times, we stumble and fall, and this is where the hardest work is: learning when to let him struggle and when to offer my hand if he needs a lift, encouraging him to stretch and grow even when it is painful. Recently, he pulled a stunt involving his schoolwork that I pulled when I was his age. Because I had done it myself, I called him out immediately. He was busted, full stop. The question was what consequences to give him.

In general, I have been pretty lucky so far. My teenager is most definitely a teenager, but he is mostly responsible, mostly reasonable, mostly a kid who doesn’t make me worry too much…yet. But the problem is, I know to sustain that, I have to draw boundaries; I have to be a parent when the situation calls for it. That day, I struck a compromise. I let him know how angry I was, and that there would be very real consequences for his actions. I let him know that if it happened again, the consequences would be much bigger. I wasn’t easy on him, but I wasn’t quite as hard as I could have been. I didn’t exactly give him the gift of failure, but I gave him the gift of one strike.

The worst part of that day was having to discipline a kid that has only made one B in middle school, a kid that is excited about joining the Debate Team in high school and tells me he “doesn’t need the drama” of a middle school romance. He never complains about volleyball practice, he comes and kisses my head every night at bedtime on his own accord, and he fiercely loves his baby sister. He’s a good kid. Don’t make me do this, I wanted to plead to him. Don’t make me come down hard on you. Because I knew that I had to, but I didn’t want to. I know we’re both learning, both figuring this out, and as much as I want to give him room, I want to make sure he knows I am not a fool or a pushover; I’m paying attention.

But this is the dance now. When they were babies, it was a waltz: there was a rhythm, a cadence to our days, so that even when the unpredictable happened, it happened within a pattern. But now, we’re two-stepping, quick-quick-slow-slow, turns as fast as we can take them. I’m trying to keep up, trying not to step out of turn, trying to keep him with me – my cheeks flushed, my adrenaline pumping, broken open, because that is the only way to do this.

Allison Slater Tate is a freelance writer and editor and the mother of four children in Central Florida. She is a Contributing Blogger for Brain, Child, and she also regularly writes for the websites of both the TODAY SHOW and NBC News covering parenting and college stories. Her writing also appears at the Washington Post, Scary Mommy, The Mid, the Huffington Post, and the Princeton Alumni Weekly. Follow her on Facebook (https://www.facebook.com/astwriter) or at her eponymous website, http://www.allisonslatertate.com.

The Beauty of My Autistic Child

Posted on November 8, 2015 by CNF • Posted in Highlights, Slider Content • Tagged autism, Autistic, beauty, mother son, son • Leave a comment

By Alysia Abbott

Before I had children I didn’t think I would care very much about their looks, certainly not in any remarkable way. Doing so would reveal a gross degree of superficiality, a collusion with a society that already places too much emphasis on attractiveness. I believed that to cultivate the value of beauty in my little girl (my first born) would be to short-change her other virtues—the openness of her heart, the spark of her imagination, the steel determination to get what she wants when she wants it.

But something changed when I had my little boy. I know that every parent believes her child to be beautiful. Even the most unfortunate face is the face that only a mother could love. It’s clichéd. So please, take this statement with a grain of salt: My son, Finn, is beautiful.

With large green-speckled brown eyes and cupid-bow lips, soft wavy brown hair that manages to look good no matter how badly I cut it, with the velvety peach fuzz of his soft rounded shoulders, skin that is exquisitely, prohibitively soft, I cultivate, even fetishize his beauty. I praise his looks to his teachers and his babysitter all the time. I take picture after picture of him using every lens available in my iPhone arsenal, studying his face in different states of repose and concentration, sharing the best of these on social media.

I’ve embraced Finn’s beauty because it’s one of the few areas where he can truly thrive. He can’t catch a ball, or throw straight; he can’t draw a picture, or sing a song, say my name, or a write a word. I’m quite certain he’ll never be an academic or even a good conversationalist. If I walk him through the house, pulling him forward by the hand if I’m not carefully watching, he’ll knock his head against the door-jams like a pinball. A teacher once advised us to put him in a helmet. This undiagnosed visual processing disorder was just another complication in his already complicated diagnosis of autism and PDD-NOS (persistent development delay-no other symptom).

Without possessing the means or desire for the sort of communication that forms the basis of typical relationships, Finn may have to rely on his beauty to get the support he’ll need to thrive. I’m hoping his beauty will charm people, as it has charmed his caregivers and teachers. I want him to be protected from the bullies I imagine waiting in the shadows for this soft mute boy.

How do you form a meaningful relationship with a boy like my son? I can’t relate with Finn intellectually. I can’t ask him how he’s doing. I can only learn about his interests incidentally. Watching him interact with toys and books and nature, I can tell you that he likes best digging his hands in dirt, throwing rocks into ponds and street drains, playing musical toys with the speaker pressed tightly against his right ear. If I fall and cry out, he’ll as likely laugh, just as he laughs at any emotion expressed with great intensity, including alarm and anger. He’s not yet shown a facility for compassion or generosity. Yet we—his mother, his father and sister—are incredibly attached to him.

In Finn, I’ve had to learn other ways of relating, of attaching and loving. And with Finn, that’s a physical relationship. Without the understanding that’s achieved through language there is only Finn’s predilection for touch, his extreme sensitivity. The way he slips his narrow fingers between mine, or curls his warm body into the crook of my arm, or wraps himself around my neck like a long mink stole when I’m sitting on the couch. In our relationship touch is everything.

This is how all of us bond with Finn. We lay with him. We breathe him in. We kiss his face. But there have also been times when I’ve bit him. Anything to get a reaction. Anything that would wake him up to my presence. I am here. I am your mother. I’m not like any another. Recognize me.

When I used to come home from a day of work and tried to seek him out, he’d pay me no mind. Distracted, focused on getting his food, or playing with the iPad he would, in these instances, see me only as a distraction, an intrusion into his world. If I was too assertive with my interruption he might try to bite or pinch me. Hard. But it’s me. I wanted to say. I am your mother. You love and miss ME. Hello! But recently, Finn’s been waking up.

I’ve come home from a night and a day in NYC. I call out his name and when he enters my line of vision at the top of the stairs he jumps up like and down like a spring and flaps his arms with excitement. I greet him there, stooping so I can meet him at his level. He would rush over to my lap were it not for the therapist, who stops him. “Who do you want to see, Finn?” she asks. “You want mom?” She prompts him to sign mom: thumb on chin, palm open, fingers outstretched. He holds the sign and the therapist verbally confirms it’s intent. Mom.

He starts to move forward again and again he is stopped, “What do you want from mom?” She prompts him to fold his arms across his chest. “You want to hug mom?” He nods, holding the sign. “Ok, hug mom.” The therapist over enunciates each word, to make sure he understands their assigned meanings. Finn is hugging mom.

And at last he is released into my arms, free to join me for a quick embrace before being ushered back to the table to complete his work for the day. After the long build up, the hug is brief, too brief for me. So I scroll through all the other motions and signs I know he understands that will deliver me the proximity I long for after so many hours away. “Kiss,” I command and he moves his stiff lips to mine for a light peck then quickly pulls way. And I make a kiss sound: Mwah! One of the simple noises I know he can reciprocate. He makes the kiss sound. And I smile. It’s our special thing.

Then his therapist leads him to the table where he will work for the rest of the afternoon and he whimpers, starts to cry a heartbreaking cry. I want to say to the therapist, “It’s okay. He doesn’t need to work now right.” But I know I can’t get in the way. He didn’t used to be able to nod “yes” or “no,” let alone sign “mom” or “hug.” ABA, assisted behavioral analysis, is working for him. It’s how he learns best. Sign “mom” and you will see mom. Sign “drink” and you will have your drink. I’m a tool, a means for him to try harder to adapt to our typical ways of communication. And I’m glad to play the role.

Today, I feel more accepting of Finn. I appreciate his beauty but I also appreciate him as an individual, not despite his peculiarities but because of them. That Finn-ness that is uniquely his, even coupled with his maladaptive autistic behaviors—the biting, the pinching and the hitting, the chewing of rubber-bands, and breaking of beloved things—is still him. And that touch. Jeff likes to say that though developmentally delayed Finn’s abilities to cuddle are freakishly advanced. “He’s a cuddling genius,” he says.

Finn’s sensory disorder, the amount of pleasure he derives from being tickled or having a stiff bristled brush run over his legs and feet is truly awe-inspiring. His expressions of pure glee, a squealing with a face stretched to a toothy grin, accompanied by a sort of thick purr are brilliant, a thing of beauty.

How could we ever trade these qualities for the temperament of another boy? This is a boy made to love. And we four are bound together by this love. Seeing in him a potential that has only grown. This is where he’s been. This is where he’s going. This is who he was. This is who he’s becoming.

Author’s Note: Since writing this essay Finn’s home therapy has been interrupted and his behavior has taken a turn for the worse. These days his touch more often used to communicate frustration (pinching, kicking) than it is to communicate love. But this is part of motherhood too, to absorb and to listen, and to find balance between the mountains and the valleys.

Alysia Abbott is a writer and the author of Fairyland, A Memoir of My Father (W.W. Norton, 2013). Her work has appeared in Vogue, TheAtlantic.com, Slate, Real Simple, TriQuarterly, and Psychology Today, among other publications. She lives with her husband and their children in Cambridge, Massachusetts. You can find her on twitter at @AlysiaAbbott.