March is Cerebral Palsy Awareness Month …
…and this is one of the many, many faces.
Let me give you the facts: cerebral palsy (CP) is basically a giant umbrella diagnosis. It means, as a rehab doctor explained to me, simply “brain injury plus mobility impairment.” Mild CP can be barely noticeable, perhaps a slightly different gait when walking, poor balance, a weak arm. Severe CP can mean someone is completely unable to walk or move on their own. My son is somewhere in the middle.
I sometimes get asked, “what causes CP?” The answer for my son is that he had a stroke in utero. We have no idea why. Trust me, I’ve replayed every moment of my pregnancy over and over again to try to figure it out.
It is adding 10 minutes to dressing your kid every morning. Splints, orthotics, prescription socks (yes, this is a thing). It’s passing up the cute baby shoes in favor of two different sizes of the widest shoes you can find, no matter how ugly they might be.
It’s knowing your insurance policy better than your office HR manager.
It is watching babies younger than yours achieve the milestones your baby so desperately works toward in physical therapy. It is double the joy when YOUR kid (finally) gets there.
It is acceptance that they may never get there, too, and knowing that’s OK.
It is living in constant fear of seizures, contractures and spasms. It is medication, every day, twice a day. It is holding your baby in the middle of the night while he is stiff as a board and knowing you can’t do anything to help.
It is cringing internally when you hear “brain damaged” used as an insult.
It’s ordering and sending extra Christmas cards for therapists, doctors, and orthotists. It is the fact that you even HAVE a preferred orthotist.
It’s therapy. Multiple times a week. And actually, kinda, sometimes looking forward to taking your kid, so you can chat with someone who speaks your language.
It’s letting your kid make a mess you otherwise wouldn’t… because they’re doing it with their right hand!
It’s feeling the eyes of judgment on you, as you give your toddler a bottle of formula in public, as you pull into the handicapped parking spot even though you and your child “look normal.”
It’s constantly being amazed at what your child is capable of. It’s focusing on that in the middle of the storm.
That’s what cerebral palsy means to our family — and I’m OK with that.