It's been a while since I last sat down to write. I easily get caught up in the day to day living, but every so often the day to day hits a little harder. Will is on the move!!! Trying to keep up with him is the new normal. He can stand anywhere in the room without holding onto anything and if there is a mobile toy near by like a baby walker see ya! All this progress is amazing to watch. My favorite time of day is first thing in the morning. After he's had his breakfast I sit him down to play while I drink my coffee. I just watch him explore and laugh and sing it's amazing and brings me to much joy. However it feels there is always a dark cloud looming.
A friend of mine Carla has a boy with Norrie disease and she recently wrote a book. If you're wanting to learn more about the disease and the emotional struggles behind it her book is like reading straight from a diary. She has a chapter called "Comparison is the Thief of Joy." I have found that can't be more true. Recent experiences and milestones have really brought this to a head for me.
*If you're interested in purchasing the book see my reference page
Will has started walking. While in his room one night he was standing holding onto the outside of his crib when all of a sudden he let go, took a step and fell on his but. It was such an amazing moment I immediately got visions in my head of him running across the house. I knew walking multiple steps would be right around the corner so I had my camera ready to film every moment. I can remember when my youngest brother started walking like it was yesterday. He had just learned to stand without assistance and the very next week he was running across the room. I guess this was what I was envisioning for Will or at least some version of this.
We were on a video call with Will's occupational therapist and his vision specialist and I was explaining how close we were to walking. I was explaining how he's walking with his walker and we were ready to take the next step. It was then that our vision specialist explained He would likely not walk without holding on to something. While this make total sense it caught me completely off guard. It felt as yet another normal experience was being taken away from me.
I now saw my boy as always having something to hold on to something to get around. We recently visited my sister and her son. Her boy is only 1 month older than Will. I watched as her boy walked independently, crawled and chased after
different objects. "Comparison is the Thief of Joy". While I try not to compare it's impossible not to. The side by side was undeniably and Will wasn't getting around as easily as his cousin and with that call with his vision specialist I know realized that he never would. Even though you know these things hearing it and seeing it first hand is completely different. I cried most days we visited our cousin. I love my sister and her boy and while the tears didn't seem to stop for me I wish we were together every day!
<My sister helping Will walk around her home.
Yes Will eventually will memorize his home and walk in his home without aid I am already starting to see that. But days will come were he can't advance like his peers just as being around our cousin showed us. Know that and seeing that is hard and it will never stop being hard. I've had to remind myself it's ok to still be overwhelmed with sadness sometimes. It doesn't mean I'm "blind" (pun intended) to the amazing things Will is doing. I'm just sad for the things I know he'd be capable of if he could see. I know if he had sight he'd already be walking everywhere and my house would already be baby proofed. As it is we are on a much different path to walking and getting around.
Currently this is his preferred means of getting around.
We are meeting with the mobility specialist next week again. I am hoping to learn more techniques with our cane. I am supposed to be getting an adult cane as well so Will and I can both hold on as he walks in front of me. Excitement and sadness go along one with the other for me. As you can see below Will knows not of his moms sadness and brightens my everyday!
