By Maria Richmond
The symptoms snuck up on me—slowly, steadily. A numbness that started in my arm, and eventually reached my legs, then turned into full body numbness in bed each night. One minute I felt fine and the next, I felt like I was trapped in a stranger’s body. I didn’t recognize myself anymore.
I was living a good life in Orlando, Florida with my husband and two beautiful boys; Alex and Caden, then, ages 3 and 5. There were always things to do in Orlando; theme parks, lakes, beaches, and playgrounds. I spent every day playing with my boys, going on fun excursions and adventures.
Until my symptoms grew worse.
“Are you okay, Mommy?” they’d ask, when they’d see me holding my head or grabbing onto the back of a chair for balance. “What’s wrong?”
“I’m ok, guys,” I’d tell them. “Just a little tired.” But I wasn’t tired. Something else was going on. I knew it.
***
A month after the symptoms started I found a neurologist. Dr. Arning didn’t know why I was going numb, getting dizzy, or having bouts of mental confusion. He sent me for an MRI. The morning of the MRI Alex and Caden sat with me in the quiet waiting room. “Bye, Mommy,” they said as I followed the technician.
When it was over, the technician told me the doctor would call if he saw anything. My thoughts shuffled: Saw anything? Oh no, do I have cancer? What will happen to my boys?
Dr. Arning called the next day. “You have a brain cyst,” he said. “come into my office in the morning” In his office Dr. Arning explained something called a Cisterna Magna —a Posterior Fossa Arachnoid Cyst. “These things are normally asymptomatic and don’t cause problems,” he said. Ok, I thought, a cyst is not a tumor, but it was a brain cyst, and from what he described, a very large one at that. And I was already having symptoms, plenty of them, so I was not asymptomatic. All I could think about as I left the office was what would I tell my boys?
At home, Alex and Caden sat playing Legos on the living room floor. “What’s wrong Mommy? Are you ok?” Alex asked.
“I’m OK,” I said. “I just have kind of a boo-boo in my head.”
***
Over the weeks, my symptoms grew worse. “Can we go to the park today?” my boys would ask. But by now, even a short trip to the park was too much and I didn’t feel comfortable driving, especially with my boys in the car. So more often than not, I’d say, “Sorry, guys, we’ll go soon but not today.” I felt terrible always saying no. Terrible.
Over the following weeks, I searched for another doctor, who specialized in brain cysts. I found one who immediately told me I would need brain surgery. I thought only of my husband and boys, a deep pit in my stomach, what if I don’t survive?
The night before surgery, Alex and Caden stood next to me in my bedroom as I packed, “We have something for you,” Alex told me. He handed me a small black notebook and turned to a page to show me his handwritten note: “Don’t worry, Mom. God is with you.” I buckled under his tenderness, marveled at how grown up he was, and so calm. The boys didn’t seem worried. I told myself if they weren’t nervous why should I be? But I didn’t want this to be the last time I saw them.
***
After I woke up from surgery, as soon as I was able to, I called Alex and Caden. They bombarded me with questions; “Are you OK now, Mom?” they asked. “When are you coming home?” “Did it hurt?” They wore me out but it felt good to be answering them—because I could. Because I was still here.
When I got home from the hospital a week later the boys greeted me as I walked in the front door. “Did it hurt?” Alex asked. “Can we see where they did the surgery?” I showed them the scar, “I’m OK now,” I said hugging them, reassuring them.
“Can we go back to the park again now?” Caden asked.
“Yep,” I said. “Soon, we’ll be going all kinds of places. My brain just has to heal a little.”
***
Things went well for a while. I gradually gained strength, and ventured out more and more. But about four months later, the headaches, numbness and mental confusion returned. I was back to being homebound. I saw the look of disappointment on Alex’s face—I could hear his thoughts, I thought your surgery was supposed to make you all better. I was no longer better.
I had a second surgery to get a shunt put in my head — directly into my cyst. It would help keep the fluid draining and the cyst from building pressure. At least we hoped. I was gone again for a week.
As I recovered at home from this second surgery I tried to balance motherhood with umpteen doctor visits, and countless days of not feeling well. I was unable to be the kind of mom I had hoped and planned on being. It was taking a long time to get back into “mommyhood.” Things were now officially beyond difficult.
Often I was too sick to tuck Alex and Caden in. I’d have to say goodnight from my bedroom across the hall. Guilt settled in. I felt like less of a mother when my boys called from their beds, “Goodnight, Mommy. We love you.” I’d sink into the sheets and make wishes for myself and for the kids. I wished for my life back. I wished to be better.
But the shunt wasn’t relieving the pressure, so sometimes Alex and Caden would ask “Why are you crying, Mom?” Caden sometimes thought he had done something wrong, and he’d apologize, “I’m sorry Mommy,” he’d say. “I didn’t mean to.”
“You’ve done nothing wrong honey,” I would reassure him. “Mommy is just sick.”
I spent my days at a new doctor’s office. This new doctor didn’t know why the shunt hadn’t worked, and he didn’t seem to want to figure it out. His treatment was to turn my shunt down at each visit so more fluid would drain out and relieve the pressure. But this approach did not work.
***
When I said goodbye to my boys again, they were scared. “When are you coming back?” Alex asked. I knew I didn’t look good, my speech was slurred, and this time we had no idea how long I’d be gone. “Can we come with you?” Caden asked. My husband and I made the 8-hour trip back to the hospital where I’d had my surgeries.
As I lay in my hospital bed again, I worried my boys would forget the kind of mom I had been—that I used to be. I was sure when they grew up all they’d remember about their childhood was how I was sick all the time. They’d no longer remember going to the park, to Disney and Sea World, and all the fun things we did. Instead, their memories would be of being lugged to constant doctor appointments, waiting in the sterile hospital, and watching me recover from surgeries. I didn’t want them to have only those memories. I wanted them to have good memories of us as a family —fun times. But those dreams and thoughts were getting doused more every day. “I’m sorry,” I told my boys in my mind. “I’m sorry I’m always sick now.”
During this hospital stay the doctors determined that the shunt had been over-draining for many months. Too much Cerebral Spinal Fluid had been pulled off my brain and had essentially, let my brain dry-up.
Yes, my brain was drying up, to the point where it was no longer floating – a condition known as sagging brain, and my sagging brain had then caused my brain stem to fall into my spine. I needed more fluid back around my brain before it went into shutdown mode. The doctor turned the shunt pressure back up to allow more fluid to collect around my brain. This would put me out of the “danger zone.” Hopefully.
But there were no guarantees that my brain would ever float back to its normal position, or that this would get rid of all of my symptoms.
This had been, by far, the most frightening and devastating of all the hospitalizations, but I went home a few days later, and once again, there was the big homecoming.
“Are you better now?” The boys asked when we pulled in the driveway.
“I sure hope so,” I told them. “I’m planning on it!”
Months would pass before I’d feel even a little better. And although I was able to eventually be a mom again, I was not the mom I had hoped I’d return to; I was a long way from being the mom I had been years before, before my brain cyst. I would have to search for a long time to find some new normal that my boys would remember, with some joy.
Author’s Note: Alex and Caden are 14 and 12 now. Although there are times I feel like I have missed chunks of my boys’ lives while they’ve been growing up, I remind myself to be grateful for having the privilege of being here.
Maria McCutchen Richmond lives in North Carolina with her two boys. She has been writing for many years; and for the past three years, she has been freelancing and writing articles for the web. She is an activist for those with brain cysts, speaking out and trying to help others by starting a following for arachnoid cysts on EmpowHer.com, starting a blog on www.arachnoidcystsupport.blogspot.com, writing articles about the condition, and educating others about this rare brain disorder.
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