There are times when having a child with differing needs and abilities can be seen more than other times. Going to a big event such as MLB games can be one. Last night Kaleb was overwhelmed with the crowd, noise, and the overall experience. We spent more time walking him around in his stroller than at his stadium seat. Then he and I opted to watch the fireworks from the van while we listened to his playlist and I held his hands. But he watched and was able to experience from where he felt safer. However, there are two things that TJ and I both loved and silently celebrated. 1- was being able to have him walk to/into Kauffman Stadium. He’s never been able to do that. 2- (and my favorite) was watching him bat at The Little K. It’s something I wondered if he would ever do. We have countless videos and pictures of Kaden batting and running the bases, but I didn’t know if or when we would have some of Kaleb. Last night even though he was overwhelmed being all of the people and noi...
It’s okay. -When we found out that we would be having a very premature baby with a heart defect who had a chance at being born with Down syndrome, our world was rocked. I was scared and kept thinking, it will be okay, I just hope he doesn’t also have Down syndrome. Then he did. Then I learned it’s okay. -Then I thought it will be okay as long as he grows and learns to eat, I don’t want to leave the NICU with a g-tube. Then Kaleb had to have surgery to get a g-tube after aspirating, getting pneumonia, and having to be intubated . I learned it was okay as I learned the true meaning behind fed is best. -When he was born twelve weeks premature with two brain bleeds we were told there was a chance he would have cerebral palsy. I thought oh no, not cp as well as Down syndrome. For a while it was out of our mind, until it wasn’t, as he grew and showed signs of cerebral palsy. Then when he was two we found out he has a rare dual diagnosis of Down syndrome and cp. Then I learned it ...