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May 01


I’m angry.  I’m just so… mad.  It’s getting a little better, I guess, but I’ve spent most of the past week absolutely furious.

I keep telling myself that it’s normal, it’s only to be expected.  Anger is okay – it’s just an emotion I have to wait out.  The past two months have been hellish, and while things are so much better, they are a long, long way from the way they were.

Sam’s legally blind in one eye, and the other eye is only 20/60.  He’s got soft tissue damage on one side, his shoulder is so tight and knotted.  He’s nine, and not the most enthusiastic of patients on a good day, which means that putting any sort of ointment or cream on his shoulder and arm is a battle royale.  Taking him into the doctor – it’s a fight, a brawl that involves me forcing him to get dressed, dragging him out of the car, and shoving him in, while he’s begging and pleading with me to please, please just let him stay home.  And even when I get him into the doctor’s office (a two hour trip, one way, involving a wheel chair and bribery the whole way),  he’s uncooperative and terrified the whole time.

We’re financially struggling in ways that I thought we had moved beyond, because when all of this happened, I had to drop my hours down to only 10 hours a week.  Marc is working a zillion hours a week, and I’m frustrated and so, so mad.  Just all the time.  I’m furious at what my life is like, I’m furious at what my son is going through, every day.  I miss my old life, with three healthy kids, with a schedule that made sense.  I miss my son going to school, laughing with his friends and learning.  Now he’s sitting at home, playing minecraft to distract him from the pain, and wondering what happened to his life.

He is getting better.  He is.  If I look at it from week to week, instead of from day to day, it’s easier.  He went out to dinner last night with us.  He had Harrison over for a playdate.  Three weeks ago, that was impossible.  Two weeks ago, one of those events would have worn him out to the extent that the next day would be spent in bed.  He is getting better.  He just is.  But it’s still so damn hard.  I don’t know how  long any of it will last, what will full recovery look like?  When will this be over?  Can he go to school in September?  Can he go next September?   Should he go?  Because even if I get past all the physical issues, there were still huge and debilitating emotional problems with school.

If it was just one thing, just the anxiety, I could do it.  If it was just the physical concerns, I could do it.  The combination of the two, the anxiety combined with the vision and the pain – knowing where to draw that line – when to force him to do stuff, when to make allowances, when to give him a pass – I never know.  I try and balance it – I try to guess, to walk the line between forcing him to do things he doesn’t want to do, and understanding when he’s just been forced too far and needs a break.   I never know, not for sure – am I forcing him too much?  Am I letting him get away with more than he should?  Are my expectations too high, not high enough?  What is he capable of, what should I let go?

And if I don’t know the answers – how much am I letting him down?  The stakes are so high – this is his life, and I don’t know what’s right and what’s wrong.  Am I listening to the right doctors?  Should I have believed the one who thought we should admit him and do another invasive round of testing, that there’s a small window of time to reverse this damage – or was it right to listen to her supervisor who thinks that we just need to stay the course, and wait it out.    Did I listen to the doctor who said what I wanted to hear, or did I listen to the doctor who was right?  And if I’m wrong – did I just consign my son to a lifetime of vision problems?  Nobody knows for sure about any of this – does he have a concussion, is letting him watch a kindle or play minecraft doing more damage?  Or is it a viable pain management technique?

He was just riding his bike.

He is getting better.  He is.  He’s sleeping fine, and waking up on his own.  He’s down to a few doses of motrin a day, and we’re working on getting the stomach pain under control.  He went to Target with me on Thursday, and that was huge.  He had people over all day yesterday, and soldiered through the whole day.  He played with his friend, and was able to go out to dinner with his family last night.  He even slept alone last night, which is a major accomplishment.

He is getting better, and I need to stop being so mad.  We’re getting through this.  It’s hard, but it’s not impossible.  He’s going to live – and there are a lot of doctors who think he’s going to make a full recovery.  We just have to stay the course (as long as that doctor was the one that was right…).  We just have to keep going, keep pushing, keep praying, keep hoping that he continues to improve.

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