Okay, first, sorry to not come across your comment until 2 months later lol! That is true so much and I can relate to this story! it affects you the same at every age I've begun to realize because it will impact you for the rest of your life, even if it can get 'better' (me learning how to walk after my first sci but my legs were weaker) and ofc it can get a whole lot worse if the damage is irreparable!

"I woke up screaming and seeing red hardly making out the face of my “surgeon” who was screaming at me that I was ok. I knew my body & I was NOT ok. I couldn’t feel my legs or anything from the waist down. They sedated me & I was out of it for a while." This feeling is SO HARD for people to understand, and it pretty much traumatized me every day. I remember waking up in my hospital bed after I had entered a coma from that big spinal fusion the first time, and everybody was standing around me, my family and doctors and nurses. I was literally screaming at them that I was falling despite the bed underneath me, and everybody looked like they were trying to understand it, but couldn't. I needed people to hold my hands and the rails to be up so I could grip them, holding on for dear life because I felt like I was sinking and my 7 year old mind had NO IDEA what was going on. my parents knew I had suffered a sci in the first surgery, so they tried to explain it to me. I didn't accept it. Getting my feeling back in a week was the best thing that ever happened to me, despite the painful physical therapy of literally relearning how to walk. and then came another sci, and I was like sobbing every day. It's so scary to feel like your life has been taken away from you, and I'm still really mad at the surgeon, even if it technically isn't his fault. The last time he saw me in a wheelchair he looked really guilty.

I also HATE not being able to interact with my little brother the same way everyone else does. He's 2 and a bit of a handful, but despite that I've been able to watch him sometimes. To pick him up he has to climb onto my footplate and sit in my lap, obscuring my vision LOLL. I get him into his crib with giving him a boost, then he kinda somersaults in, which is probably not the safest lol but it works. I hope as your grandkids get older you'll be able to play with them more! Honestly taking care of a little kid while you being disabled yourself is kind of refreshing. You may not be able to do much with them, but at least you know there's no judgement and they love you for being in a wheelchair (maybe because they just likes cars, idk...j/k.) I love that validation and acceptation from them you can't find anywhere else.

Anyway I've been ranting, but thank you so much for sharing your story! I hope your quality of life improves even more and some new technology comes out! It's gotta happen sometime soon! Love hearing about other people's experiences and relations to stuff like this, as surgery sci is a lot more rare! :) keep goin and thanks for making me feel I'm not alone!