Adventures in Cerebral Palsy

I’ve written a lot about letting go of some parenting dreams and expectations when you’re parenting a child with special needs or different abilities. The milestones shift. The path diverts. It really is like heading off on an adventure through the fog; sometimes, the fog engulfs you, stings you, leaves you battered, and other times, the fog clears and you see something for the first time, something you could have never seen on that cleared and sunny path.

Cerebral palsy is like this wild adventure that, really, I know nothing about. I can talk to my kids about school, making friends, and even, God forbid, dating, but CP? CP I know nothing about except what other people have told me, and they don’t know that adventure either. 

And, really, Ella is her own adventure. All of my kids are their own unique, wild ride that changes constantly, just Ella’s has way more loops and crazy turns. And just when I think the coaster is going left, we plummet suddenly, only to climb a hill next.

I have been so awed by my daughter lately; her sitting, her crawling, her hilarious storytelling. Today, though, I was gobsmacked by her. In front of doctors and therapists, Ella cruised. She cruised! My God, the girl moved and tears stung my eyes as the coaster dipped and my body felt as if it were floating for two seconds. And to  them, nothing; to me, the world. The fog left and the sun was so bright, and all I could see was her strength and her perseverance and her determination and the fact that this three year old kid can amaze me more than most adults.

Cerebral Palsy can often be a bitch- just a downright God damn bitch that consumes your heart and soul and fills your life with appointments and therapies and equipment and can’ts and won’ts and needles and surgeries and worry and loneliness and then, just like that, she opens  up a crack, and you’re not sure what’s what anymore. Because Ella cruising? Taking steps, looking so happy; that didn’t seem possible not that long ago. And that shit she did, that is HARD. Like, warrior status hard. 

And I guess that’s the adventure; raising warriors in a fog, not always able to see the beauty around us, stuck in that fog, until our warriors gently remind us to get out of it, to look beyond, to see the adventure that no one chose, that just became, and really, the unknown is always the best adventure, because anything really can happen. 

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