My son Victor has cerebral palsy (CP). When he first came home from the hospital his left neck, shoulder, and arm were tight and twisted and once he started to walk (not until 20 months) we could see he had major balance issues. The final diagnosis was dystonic CP – he is stiff during the day although his muscles relax at night. Like most people with dystonic CP his arms are preferentially affected. He also has other problems swallowing and eating in because not his oral muscles and whole gastrointestinal tract are affected as well.

Here’s the deal – no one seems to have told Victor about these limitations. Since he was born we have worked with amazing physical therapists and occupational therapists and Victor, well, he has inherited a double dose of the stubborn gene. Since he was three years old he has spent hours on his own working on his muscles, doing his therapy homework to be “like the other kids.” Telling Victor he can’t do something is like giving him a double-dog dare, and he is like me, just throw down the gauntlet. And he is made of tough stuff, because for him to just stand he has to force his brain to control his tight stiff muscles, use a different part of his brain to balance, and then figure out how to control his muscles using unimpaired motor pathways. What we take for granted is complex motor planning for Victor.

He worked for hours and hours to learn to jump with both feet off the ground and to hop on his good leg and then on his bad. Weekend at the dry erase board to strengthen his wrist for writing. Every chance he gets his is trying, falling, and then trying again on the monkey bars until his hands blister and bleed. And now he swings through the air, a little stiffly, but God damn it he does it.

He asked to do Tae Kwon Do so we signed him up. He know what he can and can’t do. Last week he did his first belt test. My husband and I were nervous seeing his perform with a the older and much bigger kids, but he was doing pretty well with just a few balance wobbles. And then the board. Oh my God, we did not know this was coming – he had to punch through a wooden board with his little 6 year old fist. My husband and I were both on the edge of our seats. Literally. He would be devastated if he couldn’t do it.

And then POW, his right right sailed right through. It was pure elation for him and for us.

In the car I asked him, “How did you do that, were you scared?”

He looked at me for a minute, cocked his head, and said, “Well at first I was scared, but then I told myself that if I believe I can do, then I can do it.”  I was speechless.

Recently we were at the specialist and she said, “You know, I don’t think you realize how impaired he really is.” And while his muscles cannot do what mine and yours can, I beg to differ. He is the least impaired person I know.



It is 6 am and I have not slept much this night. Oliver has needed 4 nebulizers so far tonight. In the past 30 minutes has become very wheezy so we are doing back to back to back treatments.

And I am tired. I have not slept much for the past 5 nights when Oliver started getting sick. Within 24 hours he was spiking temps of 103 and 104. After 2 days when he hit 105.1 and had a respiratory rate of 50 I caved and took him to the ER where we were admitted. While the lab results were pending he was started on IV antibiotics to cover pneumonia, Tamiflu for influenza, albuterol and atrovent for his reactive airways, and IV fluids because he was too sick to drink and his fevers and mouth breathing left him dehydrated. He also needed oxygen at night because he was hypoxic while he slept. After 2 days the nasal swab PCR came back positive for RSV and the antibiotics and Tamiflu were stopped. By day 3 he was eating well enough and was off the oxygen so could go home on albuterol, atrovent, and chest physio every 4 hours.

And we have done this song and dance more often that I care to count.

However, this time I realized that it is really all perspective. Tweeting from the hospital (because what else can you do at 3 am when you are crammed in a hospital bed and can’t sleep?) I saw that Haiti was a trending topic and then later on found out about the devastation of the earthquake. The lack of basic medical care. No safe drinking water.

Things could be a lot worse.

And so today we will go back for a follow-up appointment. I hate having to go back the next day, but he is wheezing a fair bit, so someone should check him out. And we are so lucky that we have that option.