This story begins with me on my knees in our neighborhood park on a deserted winter day, unable to get back up from falling. My then five year old began saying to an imaginary emergency call operator, “911, help my mommy can’t get up.”
It took a good five minutes for me to struggle into a standing position with blood already soaking through both pant legs. “I’m okay,” I told my son in the most confident voice I could muster, fighting back tears.
I was far from okay. While it scared me that for the first time I could not readily pop back up from a fall, I was more concerned about the impact of witnessing this on my young son. I’m the parent, he shouldn’t have to worry about me, I told myself in somewhat of a chastising way, despite knowing that falls are certainly part of the “CP package” for me.
As we walked the short distance back home with my son trying to comfort me, I couldn’t hold back the tears any longer. They continued as we went into the bathroom and I pulled up my now sticky pants from blood. At the tender age of five, my son insisted on cleaning and bandages my knees. My knees which have permanent red marks from past scrapes from falls never having a chance to fully heal before the next fall.
Luckily that weekend good friends came over for dinner. As I told them the guilt I felt about Jaden having this worry at a young age, they “flipped the script” I was telling myself. They said because Jaden is an only child, my vulnerability offers him an opportunity to grow empathy and caring that he would probably experience had he had siblings who would inevitably fall and get hurt.
Evidence of how we need our support circles to refrain things for us when we’re unable to do so.
Still, I was bothered by the fact that I couldn’t readily get up and it seemed I was falling more as I aged. I’m also an “older parent” to begin with, being 43 when my son was born. And you know, it’s funny, shortly after becoming a mother, in the back of my mind, grew a new aspiration – I want to be as fit as I can be to see my grandkids. Amazing how our minds fling decades ahead.
I also, of course, want to be in peak condition for my son’s journey through childhood and into adulthood.
That’s when I began considering Selective Dorsal Rhiztomy (SDR) surgery. I had recently learned about it from a couple friends, also living with cerebral palsy in mid-life. What if I could just not fall so much and reduce the risk of serious injury? What if. . .
I’ll fill you in on what became of that what if next week, but I’ll be live on Facebook at 4pm (ET) tomorrow to give a preview.
This series is a celebration of March as Cerebral Palsy Awareness Month and the fluidity of living with disability, the ongoing adjustment and processing it calls for, the never ending problem solving disability spurs on, and the honoring and pride of it all.