Disclaimer: I have cerebral palsy spastic diplegia. The tongue-twisting term spastic diplegia means that my muscle tone is tighter than the average person, causing stiffness and limited range of motion. Fun fact, to this day that also means I can’t sit crisscross applesauce! For example, imagine having a 2×4 that you can’t bend, you can only hold it as a straight plank. That is how stiff I was.
Growing up as a little boy with cerebral palsy, I remember going to so many doctors’ appointments, where my parents hopes for me were basically crushed with a list of predictions that created so much uncertainty and fear. However, they managed to keep it together and decipher reality from negativity. After going to physical therapy, occupational therapy, aqua therapy, and speech therapy three times a week, which I’m sure many parents can relate to, it was an endless race to a hopefully positive outcome, with the fear of a small window. Meaning, “How far will my child come? How many years will it take to get them there? And where is there?”
My parents have shared so many stories with me about when I was growing up and one of them is this: My mom was cheering me on as I was taking steps at around two years old. She was holding my hands to support me, as even at two, I still couldn’t walk without assistance. It was then when she realized how much I was crossing and overlapping my legs, like scissors; the small progress that I was making still made her happy though. When she took me to the physical therapist and showed her how I was walking, the therapist had this concerned look on her face. That is when my parents were introduced to Botox. Yes Botox, but this wasn’t the kind of Botox party you hear about for wrinkles, instead this was a treatment used to relieve the spasticity in my muscles and stop my legs from crossing. The thought of injecting their child’s bony little legs with Botox seemed so barbaric to my parents.
My dad had to hold me down while they injected both legs, my mom would have to go to the other side of the office and hold her ears, she just couldn’t bear it. I ended up going for Botox 3-4 more times, as there was a limit to the number of injections that could be administered. Despite the pain, screaming and crying, Botox definitely helped my younger self, as it allowed me to learn how to use the other muscles in my legs so I could eventually learn how to walk with assistance without scissoring.
The help that Botox gave me also allowed me to better develop my gait and better progress in my weekly therapies, as well as eventually start hippotherapy (horseback riding). Currently, at 24 years old, I walk with canes, do not need ankle-foot orthotics, and use a scooter for distance. I am glad that my parents were brave enough to put themselves through it because frankly, I don’t remember a damn thing. I’ve had to overcome so much to get to where I am now with walking, I am glad that at least I am not tripping over my own feet. Aside from Botox, I’ve had multiple intensive surgeries that have helped me achieve the level of independence I have today, but those are other stories for another time.
There is no success without struggle and sacrifice.