Wednesday, October 11, 2017

Everything looks worse in black and white

His motor examination demonstrated diffuse weakness.

His fine-motor skills continue to be impaired.

He has cerebral palsy and tone abnormalities.

I read the the pediatric neurologist's letter about Max's annual visit as soon as it arrived in the mail, like I always do. Sometimes I think that I'd be better off just filing it away, sight unseen, because as is typically the case, I felt pangs of distress when I read parts of it.

This doctor—who's seen Max since he was two weeks old—tends to write a pretty comprehensive letter, which he addresses to our pediatrician and cc's us on. It covers Max's cognitive and physical state. Cerebral palsy isn't just a physical condition; the brain fires messages to muscles, directing them how to move.

I am well aware of every single physical thing he mentioned in his letter. Max has cerebral palsy; weakness, fine-motor challenges and tone abnormalities are no shocker. Max does his best to work around them. He gets a good amount of therapy to help him learn adaptive maneuvers. We use enabling gadgets.

I don't think about the CP much on a daily basis. When he was little, I had a hard time accepting what had happened to him, but Max's evolution and the passage of time helped the grief ebb away. Still, when his challenges are there in front of me, in black and white, I consider what Max has to contend with. The same goes for educational assessments and reports.

These write-ups are not a reflection of who Max is, I realize. But there I was, standing by the pile of mail on our kitchen counter, staring at the words and wishing that movement came easier to him. Which is futile, of course. The cerebral palsy isn't going to change—it's a static condition. At times, Max's muscles may be more relaxed than others but the fact is, he will always have four-quad spastic CP.

The CP is part of who he is.

Whatever pangs I may occasionally have, I want him to embrace the CP.

No, I want him to own the CP.

Max doesn't complain about stuff being harder for him, because he doesn't know any differently. For sure, there are times when he gets annoyed—say, when something falls out of his hands that he was trying to grasp—but otherwise, he takes life in stride. This is who he is.

As parents, we feel our children's every difficulty, big and small. When one of the kids has strep throat, when Sabrina is upset about how a frenemy has treated her, when Ben falls and bumps his head, when Max gets anxious if we're in a loud and crowded place, when anyone is overly tired or bummed out or freaked out or whatever-ed out, I feel them. And so, when I consider Max's physical challenges, I feel them. 

But then I force myself to think back to the advice this very doctor once gave Dave and me about the MRI scans of Max's brain, taken at the hospital a few days after he was born. The white areas on the black film show the damage, the result of the stroke. The doctor told us to store those scans out of reach, to not take Max's medical history to heart and to look at the child in front of our eyes.

I walked upstairs and filed that letter away.

Yesterday evening, I took Max to an event at his school, which is for students with disabilities; teens from a local high school came to hang out, play sports and do crafts together. "It's going to be the best night!" Max told me during the car ride there. He dashed into the gym with a big grin and ran over to friends to say hello. I paused to watch him before I left, but then he spotted me and motioned me to leave. Spy Mom, caught in the act once again.

As I drove off I noticed floodlights on the field across the way; football players were practicing. Years ago, I might have been bummed that Max would never be one of them. But last night, I only felt happy for him.


  1. I feel your pangs of distress. I recently purged 30 years of my son's files. I read the assessments that need to be retained. They continue to sting but I also realize they were spot on in spite of the occasional comments about points on which I disagreed (can we say "denial?"). We have focused on abilities, learned essential skills and moved rather successfully into adulthood.

    I've had some frustrations recently with a couple of my son's traits/behaviors. In my heart I know the behaviors have always existed and won't change. To help me cope, my new mantra has become, "I've known it, now I have to own it." And focus on the young man in front of my eyes because he really is quite awesome.

  2. It has always been challenging for me to read my own evaluations especially the ones from years ago.

  3. I feel the same thing every time I read my daughters evaluations. I've stopped reading them recently because I know we're giving her all the help we can, and reading and worrying isn't going to change that.


  4. And it was the best night, isn't it, Max?

    Is it still going on?

    And, yes, Ellen, you feel them.

  5. Of course he has challenges that are different to other people's. But the neurologist never writes what an amazing boy he is: how empathic, how sociable, how caring. About how he's a great big brother to Ben and how determined he is, and positive. And about that hair!!


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...