Many people have been asking how we are doing. I post a lot about Jaxson, and I try to include everyone else when I can, but lately that hasn't happened. So rather than post something horrifically long on Facebook, I decided to blog. I have no idea how long this will end up being, or how erratic my writing will be, so please be prepared.
We'll start with a quick bit about Jaxson. I've noted what's been going on with his head, but not how he is doing overall. Jaxson is actually doing quite well, believe it or not. He's always in a good mood, and even when he's mellow he's still ornery. Most days you'd never know there was anything wrong with him but for the bulge on the side of his head. His gait is off-balance, but we're not too worried yet. I wouldn't walk straight if there was more weight on one side of my head than the other either! He's just such a happy kid, it's so hard to even tell when there's something going on with him. He never lets anything get him down!
Jeffrey has always been one of those kids that goes in cycles. He will have a streak of fabulous behavior and then a streak of being horrible. The streaks of good behavior are coming fewer and farther between, so it's clear that he's struggling with this one. Jaxson has been to the neurosurgeon three times in less than two weeks, plus other appointments. Jeffrey knows something is up, we've had to make too many trips, and he's worried about his brother. He wants to play with Jaxson so bad, and he does, but we have to remind him to take it easy because of Jax's head. It sucks. All they want to do is play together and they can't even play like normal boys. So Jeffrey acts out, he throws fits, he cries for no reason and he's become increasingly violent and rough. We take him to behavioral health in November, and besides the ADHD they're going to diagnose him with, I'm worried about other things that aren't quite as easy to help him deal with. No, I do not think ADHD is something "easy", but I have experience with it and I have learned techniques that work with Jeffrey already. I will not medicate him unless there's no other option. I'm just ready for this evaluation so we can work on getting him the help and coping skills he needs.
I think the best explanation for Jayson and I is tired. We're tired, drained, scared and worried. We're tired of the appointments, of the endless hours of waiting for someone to get back to us with answers, tired of never having a definitive answer or course of action, tired of not getting to spend time together or even share a bed. We haven't shared a bed since surgery because Jeffrey has a tendency to sneak into Jaxson's bed. They both move around a lot at night, so it's not safe for Jaxson for them to sleep together. So Jayson sleeps with Jeffrey and I sleep with Jaxson. Going on two weeks now. Our marriage is as solid as it ever has been, and our lines of communication flow freely, but it just sucks. We're drained from worrying all the time. Wondering if Jaxson will be awake in the morning, or if the next surgery is going to go as planned. Terrified that anything might happen to our baby at any given moment. And on top of this we have to take care of Jeffrey, who is clearly the biggest loser in this situation. He gets less attention now and we worry that we are missing something with him. We haven't even had time to get his school supplies or uniforms, and school starts next week! He's always waiting on us for something because Jaxson needs so much attention. And Jeffrey is SUCH a good kid, it is heartbreaking to watch him deal with this. Almost as heartbreaking as it is to watch Jaxson deal with it. It's hard enough watching one of your children regress because of a medical issue, but add to that watching your other child regress to toddler-like behavior and you have a pretty good dose of guilt built up.
Earlier today, Jayson took Jeffrey to pick up some paving stones from a friends house for the back yard. That left Jax and I at home for awhile. He sat on my lap for awhile and we watching Signing Time. I am not an emotional person, so I usually know when I'm due for a good cry. I've been due for about a month, so I wasn't all that surprised when I teared up holding him. Jaxson doesn't see me being emotional very often, so he wasn't quite sure what to make of it at first. Then he just looked at me with those big blue eyes and gave me a big ornery grin. It was as if he was saying, "Hey mom, it's cool, I got this!" How is it possible that such a tiny human being can possess so much strength as to hold up his own mother? And while tears streamed down my face for a little while longer, I wasn't quite as upset as before.
For me, the biggest frustration is having to explain to people that even after he gets the shunt (if he needs it), he's still not okay. In fact, I have to keep a very close eye on him all the time after that to make sure the shunt does't malfunction, get clogged or get infected. Any one of those things is an ER trip with immediate surgery. Having surgery with a shunt in place creates all kinds of new risks we have to be aware of. We would have to take precautions anytime we took him somewhere where the air pressure is different. I have to look this up, but I don't think he will be allowed to participate in contact sports. So if that's the only way we're going to fix his hydrocephalus, then of course we will do it, but there is a whole new load of things to learn. But not everyone is educated on things like this, and why should they be? I knew nothing of it until I had to, so I wouldn't expect most people to understand. But it is frustrating. Hydrocephalus is a lifelong condition. It does not go away, so no, Jaxson will still not be okay after this. Not even with regard to his head, but everything else that goes on with him.
I have to say that this has been the hardest issue for me to deal with. I know it's a pretty serious problem, but I don't think I've been this scared of losing my baby since they took him off the heart medication in the NICU. Because, like heart conditions, hydrocephalus can sneak up on you at any time. There's often no tangible cause for fluid to suddenly build up, that's why people with hydrocephalus are monitored so closely.
It's now after 10pm and I can't believe I haven't turned into a pumpkin! I'm beat, Jax is asleep on the floor and J is asleep on the couch and Jeffrey is in bed. I suppose I should join them if I want to be able to function in the morning. Oh who am I kidding? I eat little and sleep less, I'm sure I'll be up for awhile and will still hop out of bed at 6am to get my day started tomorrow. Good night!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
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