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Feb 21


While there is so much about Sam’s life that is BETTER now – he’s not in any pain.  Right off the bat – that is the biggest and most amazing improvement since the accident.  Nothing hurts now.  But there are two lingering after-affects of the accident, and they aren’t going away.

The first is obviously his vision.  He’s legally blind, and it impacts him in a lot of different ways. He’s adjusted to it so well, so well that it’s hard sometimes to remember that he can’t see that much in front of him.  But the reality is that he is still seriously visually impaired, and while I think it’s improving, slowly, slowly, slowly – you could make compelling argument that it isn’t improving, it’s just that he’s getting better at handling it, and adjusting to the disability.

The other problem is his sense of taste.  He was on a really strong medication, diamox, immediately after the diagnosis, and the bitter irony is that it didn’t appear to work at all at what we needed it to do.  It was supposed to reduce the pressure, and it didn’t.  Which is what led to the possibly permanent damage to his optic nerves.  What it did was kill his sense of taste.  It got worse and worse, until eventually he went eleven days without eating any solid food.

We were able to take him off the meds post-surgery, and his neurologist confirmed that his taste buds were essentially destroyed by the medicine.  They’ll regenerate – but she predicted that it would be better within six to eight weeks.  We’re going on on six to eight months now, and food is still an enormous issue for him.  There’s psychological trauma we’re dealing with – on several fronts.  Academically, because he was already dealing with some massive anxiety and school based phobia prior to the accident, and then the accident happened, which led to a whole other level of trauma and medical fears.  Added onto that, dealing with a disability and losing the ability to eat…

Suffice it to say – he’s got a lot to work through.  The food is the most immediate and most obvious – and in some ways the most challenging.  He’s so much better – it’s moved from him eating nothing at all, to him being my pickiest eater.  There are a LOT of things that he’ll eat now, but he doesn’t LOVE to eat the way that he used to.  And what he does is find one thing that he likes, and eats that, only that, every day for three weeks or so.  Then there’s this panic for an afternoon or a full day, where he’s sick of whatever that food is, and has no idea what he’ll eat next.

That’s what today was… and it was hard.  He wasn’t furious or raging, he was just sad and scared.  We got thru it, and he agreed to try a bowl of cheerios.  He loved it, and had two more bowls after that, so we’re safe for another couple of weeks.  He can eat a wider variety of things, and I just have to keep reminding him, and reassuring him that he’s okay, there is a whole list of things that he can eat and enjoy.

But for today – he’ll eat cheerios.  And life is good.

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