Today sucked. Mostly because I set myself up.
When I traveled to Gainesville to meet Dr. Pinkus, the neurosurgeon who was going to operate on Alyssa after birth, he started explaining to me, in depth, about her primary diagnosis, Spina Bifida. He explained the correlation between the position of the spinal chord damage and paralysis of the body. And of course, I cried. I wanted her to walk, run, and play like I did growing up. I never missed a weekend at the skating rink, I played sports all throughout school, and all I could focus on was what she would not do.
Fast forward to countless therapies later, a group of people surrounding her giving her so much support, and her sheer motivation, and cupcake can get in her wheelchair stander and roll around, still learning. She has independence in her own ways. Then I heard “gait trainer” earlier this week from another therapist. I questioned it for all of .5 seconds, considering she has no flexibility in her right knee, a severely dislocated right hip, which we as parents and doctors, 2, decided surgery would only be a short fix with no long term beneficial purpose, but I just ran with those words.
For those who may not know, a gait trainer would help improve walking ability, which Alyssa is nowhere near at this point in her life. In time hopefully, but not now. So today when I mentioned it to her primary PT, he did the right thing. He took me aside to explain to me why that would not in Alyssa’s best interest at this time.
I set myself up, and of course continued to cry for the next 45 minutes. I felt so stupid. It was like diagnosis day all over again. I know Alyssa has big things in store for her, I know her therapists want the best for her and I trust them more than anything and I got so far ahead of myself. The last thing I want to do is get Alyssa some type of device that would discourage her from all of her hard work. Today I was taught, again, to not let things excite me too much. Alyssa will get to where she needs to be in her own time, whether that means a gait trainer, a walker, a wheelchair, whatever it is. I have to slow down and support her with time.
“Slow down. Calm down. Don’t worry. Don’t hurry. Trust the process.”