The "F" Word is Silently Running Through My Head

Today begins another phase in our therapy lives...outpatient therapy.

Little Bug is starting a very unique form of occupational therapy that only a few highly specialized pediatric therapy facilities have available. We've been on a waiting list for some time to get him into our local facility, and today is his first session. I know we are very lucky to be able to have access and means to let Little Bug have this special therapy.

This new weekly session (#8 per week) is different than the others that happen at school. I have to leave work, take him out of school, go to the facility, stay for his session, bring him back to school, and return to work. Each week. Of course it sucks for me, but I feel even worse for him. Today he will miss a "bubble juggler"..... I don't know what that is, but I have a feeling he would have enjoyed it. Instead he gets to be hooked into weird machines and messed with for an hour. And he'll be late for lunch.

It makes me sad. This whole damn hypotonia thing makes . me . sad.

Sometimes I get so pissed at his lot in life. I get so angry that my beautiful child has to live this life that isn't absolutely 100% charmed. I hate that he is missing things and experiences. I hate that he is getting old enough to understand his limitations and missed opportunities.

He's come SO FAR, and I can't wrap my mind around how proud I am of him, but he truly has so far yet to go.

Years.

Hypotonia isn't something that can be cured. They say children with hypotonia will trip over themselves and have balance issues well into elementary school. We're starting to see the proof of that. His balance is hitting a plateau and that scares the crap out of me.

I get frantic when I think of his future. In November he ages out of our state program and will have to get his therapy from a special school in our district because we can't realistically afford to retain all his therapists privately. He'll be pulled out of his normal school for a half day each day to spend time at a school that I wouldn't have chosen for him, just to get his therapy (although we are very lucky to live in a very good school district, so I am not truly worried about his care while there). This new special therapy is the only thing we are privately retaining, but it's taken my cleaning lady fund just to finance that and is a real financial pain in the butt.

It's not the financial sacrifices that upsets me really. I'm well aware that we are better equipped that many to handle the financial obligations of a child with special needs, but it's the fear that eventually we won't be able to finance everything we want for him. Or more accurately, that there will one day be nothing more we can buy, hire, or invest in to help him. Money can't buy love or time, but for now, it can buy us hope in the form of new therapy. It's approaching the point where we are going to enter into a long-term status quo, and I am scared to see where we're at when that happens.

This post really doesn't have a point. I'm aware that this impending new therapy has been part of my funk lately, but I'm also just really sad at his regression into bad social skills after such a wonderful stretch of really good behavior. It's such a kick in the gut reminder that we don't have any real control over this, nor does his little baby body and brain. It's life, but sometimes it sucks.

In total honesty, I want Little Bug's needs to all go away. I want Little Bug to be able to wake up in the morning and go through the day with ease and joy. I want him to feel normal--so desperately do I want him to be able to grow up feeling normal--I'm tearing up just thinking about it, but as his emotional development grows, I see the beginning of his recognition that right now he is not normal. Today, dragging him kicking and screaming away from the bubble juggler, we'll both be keenly aware that life isn't fair.

Make no mistake. I'll do whatever it takes in this world for this child. I'd quit my job; I'd move; I'd crawl on my hands and knees to give him a horsey ride; I'd cook. I'd sell my house and car...anything for this boy. So would Appa. And every disappointment is tempered by the fact that Little Bug is the best, brightest soul I have ever had the privilege to encounter and being his parent is an honor.

Little Bug's life will be okay. Better than okay--he's going to have a great life and be a better, stronger person for his challenges. Same for Appa and I. In the grand scheme of things, we have it easier than so many others, even if it is hard to remember that while living your own trials.

But today I'm in a funk and oversensitive. I'm swearing in my head and weeping at my desk because this whole business sucks. For me, for Appa, and most of all, for our son.