Starting from when she was very little Sarah was given injections of Botox to help with her condition every three to six months. It wasn’t a cosmetic procedure. Botox apparently works by freezing certain very localized muscle groups where it’s administered and then it somehow helps to “unfreeze” the muscle groups next to them. It’s very helpful for people with movement disorders like dystonia and cerebral palsy. Sarah would get injections into her calf and hamstring muscles to assist with her ability to stretch and move those muscles and walk with supportive harnesses in ballet and physical therapy. It wears off after a few months.
For the first couple of years, when we were hooked up with the local children’s hospital, their routine was to do the Botox procedure like a day surgery. Sarah would be admitted as an inpatient for the day and we would have to meet with an anesthesiologist and a staff neurologist performing the procedure. All kids would receive full anesthesia through an IV on the grounds that Botox shots were painful, and the shots were then administered in the OR, and then we would join Sarah in the Recovery Room afterward, wait for her to wake up and be releasable, and head home. So for the first year or so, this procedure was taking a lot of time out of preschool and other activities for Sarah and a lot of sick and annual leave for us.
Then when we made the move to Kennedy-Krieger Institute when Sarah was two years old, I thought that facility had a much better Botox protocol. Sarah was not put under anesthesia and we did not have to make a separate appointment at all for her to have Botox administered. She got the Botox during her routine appointments every three to six months, with numbing cream applied to the planned shot sites to dull the pain, and a child-life specialist present to play games or make an art project with her. Also, most importantly, because getting Botox was still technically a “surgical procedure,” she got to choose a gift from the Gift Closet at Kennedy-Krieger. This fact alone was enough to motivate Sarah to get through Botox without batting an eyelash.
I remember vividly Sarah’s first Botox administration at Kennedy-Krieger and the gift she got afterward. She was super-pumped for getting her gift and I don’t think she even let out a squawk or a squeak when the five or six shots were administered. She had her eyes on the prize. It was a doll — Sarah loved dolls — dressed up as a little cheerleader. Ecstasy. Sheer heaven. This cheerleader also repeated an actual cheerleading chant if you pressed her hand or her foot, which I still remember:
Cookies! Cookies and Cream!
What’s the matter with the other team?
Nothing! Nothing at all!
They just can’t play ball!
We heard this from Kelly, I think her name might have been, thousands of times in our home. She was a great favorite of Sarah’s until the battery went dead or perhaps either Max or I conspired to bury the doll in a pile of other toys.
Sarah’s cheerleader fascination continued and when her ballet teacher, Mary, invited one of the Washington Football Team professional cheerleaders to visit the class and show the kids how to cheer and give them some actual cheerleading moves, she was overjoyed. She retained her poms that she was given and we hung them up in her room along with a cheerleading calendar.
This was all very new to me, and rather surprising. When I was in high school, my friends and I ran the school literary magazine. We considered ourselves the school intelligentsia, or artistic and literary commune wannabes. We looked rather sneeringly at the cheerleaders and PomPoms, and didn’t really regard them as people. We actually paid them a lot of attention, but snidely, as if they were a kind of Reality TV Show put on for our derision and amusement. “Katie is really starting to look kind of fat in her uniform! Totally, she should do something about that.“
It never occurred to me that Sarah would love cheerleading and want to do it, openly and without a hint of self-consciousness or embarrassment, and I guess it’s always a surprise to parents how different your kids are from you. I investigated some Special Olympics cheerleading possibilities for her, but the Special Olympics squad was quite elite, practicing its cheers for multiple hours per week and on weekends too and traveling to different events around the country. I didn’t think she was ready for that level of commitment or physical exercise.
During Sarah’s last year of school, Ninth Grade, her teacher told me that during the school football season Pep Rallies, Sarah would get very excited to see the cheerleaders coming down the hall, and the cheerleaders would make a point of stopping and having a little cheer with or near Sarah. I was glad about that, and I had it in the back of my mind to investigate the possibility of Sarah doing some sort of activity with cheerleading in High School. I thought we had plenty of time; she was only in her first year.
The First Year Without Sarah 