Thursday, March 23, 2017
To the parent whose child has been diagnosed with cerebral palsy
The following was written in honor of Cerebral Palsy Awareness Month but, really, it's for any parent, anytime, anywhere.
So, your child has been diagnosed with cerebral palsy. I know how scared, overwhelmed and devastated you may feel, because years ago, I was you. Perhaps you've never known anyone with cerebral palsy, and can only conjure up terrible images in your head. Maybe you think this is a tragedy and cry a lot. How could this happen to your child? You? Your family?
I think it was our pediatric neurologist who first verified that our boy Max had cerebral palsy, the spastic, four-quad kind that affects all of his limbs. The fact that I don't remember how or when the CP was officially diagnosed should tell you something that took me years to accept: a label is just that. The only thing—and I mean the only thing—that matters is the child in front of you.
"Look at what he's doing, not his medical records," the neurologist has always told us.
Of course you want to know: Will he walk? Will he talk? Will he be able to eat and drink on his own? Will he learn OK? What will he be like? But for the sake of your sanity, try to stop wondering about the future and focus on the here and now. If for nobody else, do this for your child, who needs and deserves all of your heart, soul and hope.
Relish the bits of progress, the inchstones, rather than always aching for the biggies. It will be good for both of you.
A child who can sit propped up with a bolster or who can bear weight on his hands and knees for a couple of seconds is a child who was not able to do that yesterday. A child who grasps a peg is a child who is figuring out how to use his hands. A child who nods to a toy he'd like to play with is a child learning to communicate. Every bit of progress is progress. Every bit is worth relishing.
"Look at what your child is doing" also means appreciating the deliciousness. That can fall to the wayside as eagle-eyed you searches constantly for worrisome signs—or limb movements that may indicate the CP is not so "bad." Again, I get it. I was that mom. In always looking for what could be wrong, I neglected to fully appreciate what was right—my adorable child. "They're only little once," the saying goes. As much as you wish for your child to get bigger and do stuff, you will regret it someday if you don't savor the cuteness, which is not the least bit impaired.
Don't torture yourself by comparing your child to his peers or obsessively reading and re-reading the list of milestones for his age (been there, done that). Do look to older kids, teens and adults who have cerebral palsy, to see how they are thriving; I've met many in the online community. Don't make the mistake of trekking from specialist to specialist, desperately searching for answers that don't exist. It's emotionally and physically draining, and you risk encountering gloomy doctors who depress you (like the neonatalogist related to a friend who agreed to see us, and who informed me that Max's future looked "ominous"). Ask around, find docs who are knowledgeable and who give you hope, then trust in them.
As for the anxiety in the pit of your stomach, take comfort in knowing that you are getting your child therapies, sitting on the floor and exercising his arms and legs, requesting yet more therapies, asking questions, reading up and learning. Children proceed on their own timeline. You are doing as much as you can.
It may be hard to believe now, but no matter how your child turns out, he will be OK and so will you. Actually, more than OK. When Max was little and I didn't know anything about disability, I thought that not being able to talk in a typical way was an awful fate. And now? Max has a range of communication: some words, a speech app, gestures, expressions. We have conversations I never could have imagined, or dared to dream, way back when. We have inside jokes. We tease each other. We talk, in our own way.
Max has his challenges—what human doesn't? His may be more obvious than others' but when I look at him I see ability, not disability. The cerebral palsy is just one part of who he is.
Someday, you too will look at your child and see only him, a child as perfect in your eyes as any.
The mom of a child with cerebral palsy
Image: Flickr/Gayle N