Charlie's Diagnosis

Asleep on the way to Cooks Children's Hospital
Some kids, for comfort, like to snuggle up to a nice cozy blanket. Some kids, for self soothing, like to suck on their thumbs and maybe melodically hum to themselves. And some kids... my kid... likes to throw his head from side to side, seizure style, and scare the crap out of his parents.

I've been thinking for days, how I could transfer my feelings into words. Every time I sit down to do it, I become instantly exhausted. All of my fears and experiences from our trip to Dallas are so overpowering in comparison to our usual day to day, that I've really just left it alone, allowing it time to sink in. I was so overwhelmed by everything in the beginning, that I didn't know where to start. I didn't know what to think, I didn't know how I should respond, I didn't know how to fix it- ...I shut it out. How else can we get on with our normal every day lives and duties, if we lose our focus? I'm finally to a point of acceptance, a point of peace, where its become nothing more than what it is. Does that make sense? Its nothing that we can't handle, its nothing that I can fix, its nothing that is going to make a difference in the way that I love my son. It is what it is.

The play room at the Ronald McDonald house
Last Tuesday, we loaded the kids up in our new minivan (oh, you just wait, the big introduction is soon to come), and we hit the road. We had snagged a last minute appointment thanks to a very helpful staff member, and off we went. We were also lucky enough to get a room at the Ronald McDonald house, a beautiful place that was so far beyond our expectations. So much so, that I didn't allow myself to take any pictures while we were there, other than in the play room. It wasn't my house to photograph. That might sound silly, but considering all of the emotions that echoed between the walls, I just couldn't remove my lens cap.



Tuesday afternoon, we walked from the Ronald McDonald house over to the hospital. Anxiety levels were at an all time silent high. As we sat in the much larger than I imagined waiting room at the neurology department, reality hit. A girl to the left, shouting loudly- every couple of seconds, because of her tourret's. A little boy to the right, twitching every couple of minutes- but not in a way that seemed to disturb him. It didn't seem right. We didn't quite fit in, we felt out of place. As we waited, we read books and sang songs to avoid the awkwardness of our new surroundings. Charlie was tired and rubbing his eyes. He had a seizure (which we're about to find out isn't a seizure at all), right there just feet away from where the doctor would be. Maybe he would do it again once we got into his office?


I explained in details, Charlie's symptoms. I showed the Doctor the videos that I had made on my camera. I made eye contact as much as possible, hoping that he'd see my over the top desperation for answers. And then, after the exam, I was thrown completely off course...

"Your son isn't having seizures".

What? No... but, didn't you see the videos? Didn't you hear anything that I just told you?

"Your son is having stereotopies".

Seizures. My son is having seizures. Not stereowhatevers. I watch him have them every day, several times a day. Look again. Check, again. Run tests, observe him for longer than ten minutes, help us- I pleaded with him in my head. Out loud though, all I could say was "...are you sure?". The doctor laughed a little, having probably heard that question come from every mother of every baby and child he had ever seen. He went on to explain how he was an epileptologist- epilepsy and seizures were his life. Christopher and I had talked before we even left Abilene, about how we were going to see a specialist, and he would probably know instantly what was wrong with Charlie. We agreed that we'd listen to the doctor, while at the same time, not allow anybody to jump to conclusions. Well when he told me that my son wasn't having seizures, all of that went out the window, and I started fighting. Not fighting with the doctor exactly, but more like, fighting for further testing. Pushing for evidence. Without having realized it though, I had apparently diagnosed Charlie before we even went there. I wasn't letting it in.

I was sure that my son had epilepsy. I had seen it.

We left the office a few minutes later with orders for a 23 hour in-patient EEG. We'd come back in a week or two, admit Charlie to the hospital, and then we'd know for sure.

The tension had built up behind my eyes, and by the time we made it back to the parking lot at the Ronald McDonald house, I was burying my face in my hands, tears flowing full force. Christopher and I were arguing- "why didn't you back me up?", I asked him. "You didn't say a single word, you just sat there", I blubbered, sitting in the back of our van while the babies sang out complaints of hunger.

Later that night as we settled down after our busy day- after hours of traveling, and play rooms, and attempting to eat an allergy free meal in a cafeteria so different from our kitchen back home- I remembered what Christopher and I had talked about before we left Abilene.

We said we'd listen to the doctor.

I tried to clear my mind. Charlie was crawling around the room, opening and closing desk drawers, occasionally slamming them on his finger and distracting himself with the pain. Eleanore was watching Piglets Big Movie on the portable DVD player that we had borrowed from our neighbors across the street. Christopher was... somewhere (its not my job to keep tabs on him the way I have to with the babies, so he sometimes slips my mind). I layed on the broken sleep number bed, netbook in lap, eyes focusing on the ceiling, thinking about every word that had come out of the doctors mouth. I replayed the visit over and over again in my exhausted memory. "Your son isn't having seizures", he had said. He had followed that statement with facts. Facts that I had ignored at the time, but was finally trying to wrap my brain around.

I thought about it all night. I layed awake, listening to the sounds of helicopters landing at the hospital, shivering due to the lack of heat in the room, flipping from side to side trying to get comfortable without my familiar pregnancy nest. It must have been somewhere around two in the morning, when I decided that ...the doctor was right. Everything he had said slowly came together, much like a puzzle. Every little piece of information connecting with a piece of observation, and finally I was able to see the big picture. The doctor, was right.

We called the next morning, and cancelled the 23 hour EEG.

Our son has something called Stereotypic Movement Disorder.

He rolls his head from side to side, the same way a child with Autism does, as a way of comforting himself. I've asked myself why, over and over again. Why would he do this? Am I not enough? Do I not hold him when he needs to be held? Do I not respond to his cries fast enough? ...it has nothing to do with that. It took me days to come to the conclusion that this is not my fault. Some kids bang their heads on a wall, some kids bite themselves, but our kid, rolls his head from side to side, sometimes so violently that it looks like hes having a seizure. And its not our fault. Its just something he does. Its something he might always do. He might grow out of it, he might not. It might be associated with a more serious condition, it might not. It is what it is.

Eleanore, our oldest, also has a movement disorder. Rhythmic Movement Disorder. Just as shes falling asleep, or if her slumber is disturbed, she gets on her hands and knees, and rocks her entire body. Sometimes, depending on her surroundings, she'll rock for hours. When the baby's cries wake her up in the middle of the night, she starts rocking. When shes finally finished talking to her imaginary friends after the lights have been turned out, she gets on all fours, and rocks herself.

Both of our kids have movement disorders? Different movement disorders. I want to ask myself why, and I want to find an answer. But as soon as I start to let my mind wander there, the exhaustion tackles me from behind, I remind myself that it is what it is, and I move on with my life. I don't care, that they have movement disorders, and neither should they.

Thank God that both of our beautiful children are healthy.


To learn more about Stereotypic Movement Disorder (SMD), click here.