What if it's not cerebral palsy?
|Malachi on his new scooter, which helps him "crawl" around, |
while Jaden helps retrieve their "toys" from inside a kitchen cabinet.
I've thought for a while now about how it would probably be a lot easier to accept Malachi's disability if it were something genetic, like Down syndrome.
Don't get me wrong, I don't think it would be easy, just a little easier.
Because at that point, it would just be who he is. It would be part of the whole package, down to his very DNA.
But with a brain injury, something happened to Malachi, something that took something from him. Along with that are all these feelings of loss and guilt and grief that I'm not sure I'll ever fully escape.
I've sort of alluded to this idea before that injured special needs kids aren't the same as genetic special needs kids, and I've thought of writing a more in-depth post about it for a while, but I always came back to "what's the point?" Why do I want to point out this potential rift in the special needs community? Do I really want to get into some sort of horrific "who has suffered more" debate?
No, I don't.
So why am I bringing this up now?
Well, because almost two months ago we took Malachi to a new developmental pediatrician. Our regular hospital hadn't sent over Malachi's records, so all she had to go on was what I told her and what she saw. With that disclaimer, she mentioned casually — as if this wouldn't explode my head — that she wondered if Malachi's prematurity wasn't the cause of his poor motor control. She said his expression of cerebral palsy is unusual for someone with his type of brain injury (Grade III PVL) and that it might be a genetic or metabolic disorder instead but that no one looked for it because of the results of the ultrasound.
I quickly dismissed this idea. It's nuts. And besides, wouldn't Jaden, who has identical DNA, have it, too? Clearly she just didn't have all the facts.
But she had planted a seed and at the edge of my consciousness questions sprouted up.
She had asked if he was unable to do things he had previously been able to do. No, I had responded, it's been a steady (albeit exceedingly slow) progression.
But is that really true? Malachi was a champion eater as a preemie newborn but now struggles with a swallowing disorder (dysphagia). And remember last spring when he learned how to roll over? Yeah, he still does that only every once in a while and often seems to forget that it is an option for him. How about in early December when he could stand by himself holding onto the crib edge? Yeah, I've tried that a few different times over the last few days and no dice.
Why does it seem like he can't build on his skills like Jaden can? Is it just the type and severity of CP that he has or...
...is something else going on? (Dun, dun dun.)
What if!, my mind exclaims. What if it's like those twins who were misdiagnosed with cerebral palsy but actually had a metabolic disorder? What if that's Malachi? What if he just has to take a pill and he'll be all better?
I think about this scenario in exactly the same way I think about what I would do if I won the Powerball tomorrow. Yippeeeeee! So long, suckers!
Yes, I've grown a lot since Malachi's diagnosis. Yes, I know some of you out there have cerebral palsy yourself and wouldn't change it and don't want me to diminish your existence.
I get it. I really do.
But, c'mon, man! What if? What if I could leave this Land of Not OK? What if I could go back to only being a visitor? How sweet that would be! What if it's not cerebral palsy?!
Then another voice calls from the depths of a very dark place.
What iffffff, this voice slithers. What if it's not cerebral palsy? What if it's like that other boy you know? The one who was misdiagnosed with cerebral palsy, but at age 7 his parents found out he actually has a rare genetic disorder?
A genetic disorder that will result in his slow degeneration and death by his mid-20s.
Leave me to my cerebral palsy! I'll take this diagnosis! It's fine! It's great, actually! I love it!
So, it's like I said. I really don't want to get into a debate on the hierarchy of special needs and who has it "better" or "worse" than someone else.
But what if.....?
This post is part of the CP Connection, a monthly blog party for all cerebral palsy-related blogs! Click the above graphic to read more or participate in this blog party!