The past few weeks have been wonderful at the Sirmon house. Benjamin continues to get stronger, Isla’s purse collection is multiplying, and Lennon has been educating us on marriage. “When you find someone you are not friends with, you marry them.” Very interesting. 🙂
We all have been working a little harder with Benjamin’s therapy at home, specifically on his head control. He is starting to turn his head a little in supported positions, and trying to initiate movements forward and back. This is huge for a kiddo who didn’t move for months after birth.
Tonight, KC and I saw another miracle evolve into a milestone. I sat Benjamin in front of me and started working with his head control. While holding, I felt Benjamin move his head away from the support of my hands. With support around his shoulders, Benjamin balanced his head in midline for 25 seconds. I quietly yelled at KC (while he was on an important phone call) with tears in my eyes to grab his attention. Benjamin quickly lost control of his head so I leaned him back and grabbed the camera. 🙂 Hoping for a repeat performance, I started filming and he performed on cue. Benjamin balanced his head once I placed it, and he was able to turn and move his head slightly before losing the control of his head. The past few weeks had definitely given me hope for Benjamin’s head control, but I never expected this so soon. This kid is amazing.
He was also fitted for new braces last week for his feet. Hopefully, we will reveal those next week.
The role of parents (not just parents of kids with different abilities) should be to not only advocate for your child, but also advocate for the children that will follow behind. Wednesday, I went to a Legislative Roundtable hoping to get answers that may help Benjamin and our family, but looking around, I realized that 1. I am not alone and 2. If we don’t speak up for our kids, no one else will. As I shared our story, I realized the people who are making the decisions are not aware of the struggles we face. I was barely able to start before the tears began and my mom had to finish. I don’t get upset over Benjamin’s struggles, I get upset talking about the things I have to fight daily (insurance, support, treatments). So many things go into having a child with special needs, things that stand in the way of spending quality time with Benjamin. I guess my days of avoiding conversation and drowning my thoughts in writing are over. I will continue to write, but it’s time for me to be able to share Benjamin’s story in person. If this helps to make a change in our system, I am all in. My credentials keep growing… From PT/mom to nurse, respiratory therapist, with a little OT/ST, and now advocate. 🙂