The First Twenty Years

I have had people ask me if David graduates this year. He does not. He has another year, as he can go to school until he is 21. This made me realize though, that it has been a looooooong time since last I blogged here. I guess you can think about it this way.....no news is good news.....or at least......not bad news. 

If my eyes didn't deceive me, it was 2019 when last I posted here. A lot and yet really nothing has happened since then. David has had a couple of hospital stays, one was for a 105-degree fever. Yeah, that was fun....not! And scary as heck. Then there was a hospital stay for a bladder blockage (possibly a kidney stone), but it all took care of itself. For the most part, though, his health has remained good and he was the only kid in the school that was allowed to go all day, this entire year, as his room is pretty much quarantined in the best of times and his socialization was limited to about three people. He has loved every second of it, as during the lockdown last year for the last nine weeks, he did not have a good time being at home all that time. Mom just isn't as thrilling as she would like to think she is and I got a lot of him pushing me away and pointing towards the door. He missed his teacher, his para, and the other kids. Hopefully next school year, he can have a lot more peer socialization. 

Yes, David is growing up and he is 20 right now. Some days I can't believe it. He is no longer my little boy. He is now a man, and if I ever forget that, all I have to do is look at the mustache and goatee that his face just naturally grows. I think he has more facial hair than any of his brothers....and he likes it. Still though, when I see him laughing at Spongebob or giving me his "cute face", it lets me know that my special little boy is still in there. He just has facial hair now.

David has been very blessed school-wise, as he has ended up with a very kind and loving teacher and an amazing para. I think the school finally realized that these special kids need to have the same para as much as possible for so many reasons. His para Miss Tony is a keeper and when his school years are through, I don't know which one is going to be more lost, David or Miss Tony. She gets so much out of David and he adores her. 

With David growing up and transitioning from a child to an adult, this process has not been without struggles. Everything we knew before he turned 19, changed directly after. He had to change where he gets extended services and who his advocate is, I had to become his legal conservator (not just his mom), he has had to go on medicare for insurance (which was a nightmare to figure out), and now everything he does is in the adult world. No longer is he considered a child. It is a mixed blessing as I am beyond grateful that the tiny little guy that they didn't think would live to make it out of the NICU 20 years ago, is still here, going strong and proving to the world that for him there are no ceilings. On the other hand though, sometimes I look at pictures of him when he was little and I miss my baby. I guess it is just a normal mom thing. 

David still gets his botox injections for his muscles every three months and he does fairly well with his mobility. Unfortunately, when he had the spinal surgery to straighten his spine, he did lose some flexibility due to the rod in his back and he took a few steps back in his ability to walk with his walker. He has done well though, with trying to catch up. The bottom line unfortunately is, there are just some things he used to do, that he will never be able to do again. We deal with it and go on. 

School is almost out and soon we will be in summer. This year, David has put on more weight and gained some strength. I decided to change up his diet and it has worked very well for him. It is my hope that with this new weight gain and strength, that he will be able to enjoy the pool more this year. The last couple of years, because of his low weight, if it wasn't really hot outside, if he got in the pool, it would drop his blood pressure and give him an almost hypothermic reaction. Then it would take a lot to get his body temperature back up. Fingers crossed that this year we don't have this issue. 

It is so hard to believe, that this year David will be 21 and that next school year he will be graduating from high school. He has been in this school district since he was 3 years old. To not have him there after next year will be so surreal. Even more surreal though is that he will be a high school graduate. I remember when he was about 4 years old, and I was at an IEP for David. His teachers and extended staff were all present and something was brought up about when he would be graduating. I remember his speech teacher Mickey Mason, tearing up and saying, "I can't wait to see him go across that stage. I will be the one cheering the loudest." I have no doubt that she will be too. 

David has been through a great deal in his first 20 years. He started out beyond critical, survived, lost his dad, lost his grandma, suffered through years of seizures, has had numerous hospital stays, lots of surgeries, has been septic on a couple of occasions and nearly died, has gone to school, made friends, and taught everyone who knows him, unconditional love, kindness, giving and the knowledge that not all disabilities are equal and that disabilities are not roadblocks in life, but merely speed bumps. 

It has been an exciting 20 years and I can't wait to see what the next 20 holds for him. Who knows what medical breakthroughs there will be and just how many more lives he will touch? What I do know though, is that David has never quit fighting a day in his life and whatever the future holds, he will be ready and in his own small way, he is gonna change the world. Heck....he already has. 

Until next time, take care, be kind and never give up. If David can do it....so can you!