As I helplessly sit and watch my child nap in a hospital bed for the 19th day in a row, I can’t help but be sad. Don’t get me wrong, this boy remains happy despite the circumstances. He doesn’t know any different, but I do. More often than not, I have wished I could trade places with him. For anyone else, a 19 day (and counting) hospital stay would be the end of the world. It would prompt family visits, texts and phone calls to see how they’re doing. But for Jaxson, it’s the norm & nobody seems to bat an eye when he is yet again admitted into the hospital. There are still days where it’s hard to grasp the idea that this is our normal, and today is one of those days. This kid is 3 years old and some of his best friends are nurses. He doesn’t fear typical toddler things, he fears doctors with stethoscopes & surgeons with masks. While he should be outside playing in rain puddles, he goes for wagon rides around the unit; IV pole closely in tow. Eventually, he will be caught up developmentally, he will fear different things, he will socialize with kids his age. But the memories will remain. It’s hard knowing most of his early memories will consist of hospital visits, and surgeries. Because of that, I try to at least make the most of it & find things he likes to do here. I want the good memories to outweigh the bad.
I know the saying- you play the hand you were dealt. And I think we have done a pretty good job at that. Inevitably, there are still days I can’t help but wonder what Jaxsons life would be like if he didn’t have to endure all that he has.
So many times I stopped myself from creating this blog because I don’t want everyone to think I’m looking for pity. I’m not; I just want to keep people informed and help them understand the severity of what he goes through despite it being his normal.
I have never been one to refrain from taking him places for fear of what others might think. He’s always had tubes coming from various parts of his body. I’ve always been open to answering people’s questions on what they’re for. I want people to be aware & not afraid. I would much rather have someone come up to me in public & start a conversation than point and stare. We live in a society where different is highly judged. And because of that, I fear for his self esteem when he is older. I don’t ever want him to think that he’s not worthy of something because of his diagnosis. I want him to look down at his scars & these foreign objects that are now a part of him and remember how strong he is. I will always encourage him to see the good in things despite how negative the situation might be. If ever he feels like giving up, I will remind him of how far he has come.

Jaxsons journey is far from over, there will continue to be bad days- and we will handle them as they come. Most importantly, we will cherish the good days. I don’t know what the future holds. All I know is we’re in this together.


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