Today. Tough. We scheduled an appointment for April 1st, to talk to Dr Greenidge about is concerns and his decision to put “implants” (valves) into Christopher’s eyes. My wife took Christopher for a follow up visit one week ago (This is only the 2nd visit in about 100 that I didn’t attend… ) when Dr Greenidge gave her the bad news that he wanted to do implants. We’ve been depressed ever since.

Today was the worst. A week’s worth of depression, sorrow, and worry is starting to take it’s toll. Laura and I are barely talking now. When we do… it is almost certain that it will be some sort of complaint or defensive comment. I am trying to stay calm… but I lash out at her for lashing out at me. I’m just no good at this whole “crappy life” thing. We both love Christopher so much that it is just too much to handle.

On top of what we deal with normally, My broker came to me and started offering to help in any way she could. She just did it at the wrong time. I don’t think, at first, she understood what sort of problems we face, daily, with this. So, she said she was sorry to hear things had taken a turn for the worse… and did what everyone does… started asking about the situation. The problem, as it always has been, is that it is difficult to explain to others that it can’t be cured, and that there is no way of “fixing” it. Then when she started to realize that it is a “deep” issue… she started offering help in many ways… she would love to babysit to let Laura and I go out, what do we need, etc. I just started to drip tears… not wanting to… but not able to help myself. It was a horrible feeling.

I really needed to stay late at work (I am behind on everything right now… after Laura left and I have to be the office manager and the lead agent on my team) and try to catch up on stuff PLUS I have to study for the state Mortgage Broker’s exam… but my wife got really upset that I wasn’t home to eat dinner. She just sounded like there was a real problem with that… even though we discussed 2 times today that I would be late.. unless I was able to get out earlier.

So, I decided that I would just come home. I don’t want this to tear us apart, but, unfortunately, I sacrifice work to come home. It is hard to make money if I can’t do what I need to do. Financially, we are in turmoil right now. We are living day to day. We aren’t the type of people to ask, beg, or borrow anything from anyone. So, we quietly scrape by right now.

Medical bills are mounting… we haven’t paid Laura’s deductible from last year $1,500 and we haven’t paid Christopher’s deductible this year $1,500. We spend about $10 per day patching Christopher – this is the worst part of all of this… we have to patch his right eye so that the left eye will keep working. He HATES them and cries, and cries, and rips them off at every chance he has to. This is why Laura stays home so that she can make sure he keeps them on. He just has such a strong spirit and won’t give up on it. Which is hard because, as parents, we want our children to be “fighters” and not give up. To endure through anything. And new we have to “break” him… It just keeps getting harder and harder to do.

Last year we spent over $11,000 out of pocket for medical bills – copays, premiums, 5 pairs of glasses, eye exams, patches, eye drops (another horrible part of our daily life! Twice a day we have to pin Christopher down… on the ground, force his eye open, and give him a drop of Timol – it stings him bad. He cries each time and says “it herwts… it herwts!.. ow… ow!”

So… long day… ended much worse than it started… and all of the problems are still here. That question keeps running through my head… all day… every day… WHY?

Why do I have to hurt my son… all day long with the patches? Why do I have to put drops in his eyes that sting him bad when he wakes and before he goes to bed? Why do I have to take him to the hospital 19 times and STILL have to worry about putting implants in his eyes? Why? Why?

This blog is good. Makes a good diary. I don’t really feel any better… yet… but this is the first time I can really feel like I’m talking to someone about it. I really don’t know who would even bother to read this depressing stuff… but it’s nice to get it out.

Maybe, just maybe, tomorrow will be better… I don’t really think that though… We will have a lot of sleepless nights and depressed days until we talk to Dr Greenidge and get some answers on the Implants. Why?

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