I've been feeling really down lately. I've gained weight, I'm not sleeping, I'm constantly on the go and I feel like everything we do is such a fight. Why do some families have to struggle for every little thing? What decisions have we made that could have been handled differently? Why can't things just be normal?
Well, I know the answers to all of those questions. No one knows why some families have to struggle the way we do. It's something that happens when you have a child with disabilities. Going down to one income is going to affect anyone's budget, but when you're already in the middle-class, it takes a bigger hit than most people know. There is no saving, no preparation for the future. But we, as with most families in our situation, figure out how to make it work. It's not easy, and sometimes things are late, but we mostly manage. And then there's the mental and emotional toll having a child with disabilities takes on a person and a family. Especially when there are siblings involved. On top of worrying about the child that is sick, there's another child who needs attention and love. It's not uncommon for these siblings to act out, especially younger kids that don't understand what is going on. Why do some families have it harder than others? My feeling is that it's because the familial unit is strong enough to handle it. If it weren't for the strength of my relationship with Jayson, there is no way we would be where we are. But because our love endures, we have two pretty happy kids that know they're loved, even in the hardest of times.
What decisions have we made that could have been done differently? I'm sure there are many, but with each situation, we've made the decision that we thought was best at the time. Whether it's what groceries to buy, how much gas to put in the car, or which bill to pay first, it's always about what is best at the time. There is so much going on with Jaxson, that we can't plan anything long term. We want to have thanksgiving at our house, and we will, but we aren't planning a huge get-together because we don't know if Jaxson will suddenly spike a fever or end up with some kind of infection that lands him in the hospital for a week. And don't even ask bout Christmas plans. I can barely think past today, let alone that far out. But that's how we do it. Each decision is based on what's going on at that time. Seem times a different choice should have been made, but hindsight is always 20/20. So we make do and confront whatever life throws at us head on.
Why can't things be normal? Well, they are normal. Our normal. We just have to learn to adapt and adjust to what our new normal is. It's not easy, actually it pretty much sucks, and it takes a lot of time, but I think we are rounding the final curve and figuring things out.
So as we adjust and grow to love our lives, I like to take time to stop and think about everyone who has supported and helped us out along the way. There's a single mom who makes donations into Jaxson's account whenever she can afford it. She doesn't have to do that. She could be saving for her baby, and she probably is, but she chooses to give a little to us. We have received donations from some older people who live solely on social security. If you know anything about that, you know that it's not easy to live on social security alone, so for these people to give to us is simply amazing. We've received help friends parents, some of whom I haven't spoken to in years. We've received an outpouring of love and support on Jaxson's page and have been welcomed into many communities, no questions asked. A friends sister, whom I've never met, is the one who started this business with the benefit.
We are blessed in so many ways and we are grateful to each and every person that has reached out to support and help us. And it always comes at just the right time. God is truly looking out for us. He definitely has a purpose for Jaxson, and I'm excited to see what it might be.
Trying to remember how lucky we are is hard when things feel like they could come crashing down at any moment. But that's why we have these pages for Jaxson. All I have to do is l look at his Facebook page and I'm reminded that he has tons of prayer warriors out there. So many are pulling for him and watching his progress. I feel like everyone is family in the communities on Facebook. Whenever someone loses a child or has a setback, I cry for them and their families. Anytime there's an issue with Jaxson, they cry and worry with me. If you have enough blessings in your life to count on one hand, count yourself lucky. Not everyone is.
Now back to Jaxson. He has a neurology appointment today and it's the one appointment I have been dreading. I'm glad we're finally getting in there because maybe they'll be able to tell us something about Jaxson, but part of me doesn't want to hear what they have to say. I know they're going to order tests and possibly labs, so I don't know how much information I'll come home with today. I'm just really scared. No parent wants to hear that their child has anything wrong with his brain. I pray that we don't have to hear something crazy like that. I think my biggest concern is that there's going to be some sort of growth problem, which could cause his bones to fuse early. They wouldn't be able to tell us anything like that without further testing, so it's not something I'd have to deal with today, but it's still a concern. Jaxson had a brain MRI in July, so they'll have access to that, but I'm not sure how much they'll be able to learn from it since it was several months ago. Babies do so much growing, I assume they'll want something else. I don't know. I'm just worried about what they're going to tell me.
I also think that part of the reason I've been so depressed in the last week is because I have been thinking about Jaxson's future. We have no idea what the future holds for him. He has several things that could possibly cause a problem down the road, like his heart and syrinx. He has things that will get better, like his coordination and muscle function. Or maybe they won't. We just don't know. And I'm so scared that this syrinx is going to cause major problems for him. I think his spine is in worse condition than we initially understood and I'm terrified that he's going to end up in a wheelchair for the rest of his life. Don't get me wrong, Jaxson wouldn't complain, he'd just keep smiling that smile and looking at you with those bright blue eyes. He'd find a way to make you laugh and he'd learn to function on his own. But no parent wants that life for their child.
Ok, I have to get some thins done before Jaxson wakes up. Laundry is calling my name! Please remember that if you are local, there is a benefit for Jaxson this Sunday. It's at Carribean Jerks at Polaris from 1-6. Please come if you can, it will definitely be a good time!
"Life is not how it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
