Jaxson is walking!

Jaxson has been “able” to walk for awhile now, he’d take a few steps here and there but never anything consistent. And because his lines don’t give him the freedom he needs, he has always preferred to crawl because he felt it was safer. For a few months, he wore his backpack full of tpn & pumps, but they added a new med and switched pumps so the bag is much heavier now making it harder for him to carry. Anyway, the past couple of days he’s started to walk a lot more, and now seems to prefer walking over crawling. He even walked from our apartment to the car, and just two days ago he was terrified to walk outside even if he was holding somebody’s hand. His teachers at school also said he was walking around there a lot today. I really need to get him a backpack that rolls so he can be completely independent- because right now he depends on someone to carry his bag, there is no way he can carry the weight of all his meds. This is such a huge milestone & we’ve waited patiently for him to meet it, while working at it every day to get him comfortable.

Up until about 9 months old, he would never bear weight on his feet. He finally started to and that turned into him standing against things. He started to cruise the furniture at about 15 months old and finally at 2 and a half he took his first solo step. We would walk around the house together as he held my hand, never taking more than 5 or 6 steps alone. He had a hard time bending his knees, and had a difficult time with balance when he wasn’t holding on to something. It seems something clicked in his head and overnight he was more comfortable than he’s ever been. I’m so happy he finally found the confidence he needed, because I knew he could do it- he just didn’t trust himself for some reason. I’m so proud of him, I don’t care how long it takes him to meet his milestones. What matters most is that we work at it everyday, and he will do it when he’s ready.

I saw an article awhile back and one of the quotes has stuck with me. “They know what it’s like to realize, finally, that it doesn’t really matter if their children have learning disabilities, motor issues or vision problems, or if they take forever to learn how to walk (or even if they never learn)–because as long as their children live, they’ll figure the rest out.” (If you’re interested in reading that whole article, click here) Although that quote is related to prematurity, I still feel it’s true for all medically fragile children. Jaxson was born premature, but his developmental delays are mostly related to his diagnosis & frequent hospital stays. Remembering that quote has not only helped me cope with his delays, it has also helped me through all of his hospitalizations, I dont care how frequently we visit the ER, or how long he’s admitted, because as long as he lives we’ll figure the rest out.

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.

There isn’t much to update on Jaxson. The bleeding has stopped for a few days now and he’s been stable. We’re still working on getting the medication at home so he can be discharged (hopefully).

Because of all of his hospitalizations, Jaxson suffers severe developmental delays. Because he has spent so much time in the hospital, it has taken him longer to meet all of his milestones like learning how to crawl, sit up, say his first word, and he is still learning how to walk. He is even still learning how to do basic things. We get therapies at home, and he also goes to developmental preschool. These have helped tremendously, especially the developmental preschool- I saw him progress a ton in just 2 months. He was interacting with kids his age, working on walking unassisted, learning signs, and he was more interested in toys than he’s ever been. But, when he comes to the hospital he kind of takes 2 steps back. I know he’s capable of doing everything he has learned previously, but he gets so stressed out and completely shuts down. The physical therapist here has been coming by- she brought different toys, bubbles and a chair to sit him up in so he’s not always laying in bed. She suggested giving him one thing he wants and one thing we want- For example he wants to watch movies on his tablet & wants to lay down- so he can have his tablet but sit in the chair. This has been working well so far and sometimes I’m even able to get him to interact with his toys for a few minutes at a time, and he loves when I blow bubbles so he can pop them. Slow progress is still progress.