Tuesday, August 4, 2009

I got an e-mail today from a good friend whom I'd called a couple of times after the diagnosis to talk through things.  She asked how we were doing.  I think the reply pretty much sums up where we are mentally at this point. So, I thought I'd share it here. 

We're doing good. Better.

Getting much better at taking it one day at a time. And as I said in Ethan's journal, it's amazing to me how quickly one adapts to a radically offered reality.

For example, everyone keeps saying how amazing it is that Sarah are approaching this so "practically". But, really, there isn't any other functional way to handle it. One day at a time, one doctor's call, doctor's visit at a time.

Nine months ago, we went through $100 worth of baby bottles because they had BPA in the plastic and that was linked to some minor incidence of something or other.

Just two months ago, before the hernia surgery, when we were talking with the ortho specialist about Ethan's kyphosis, and the need to do an MRI under general anesthesia, we expressed a concern that we wanted to limit the number of times that Ethan is put under due to something that Sarah had come across online that *implied* a correlation between exposure to general anesthesia in kids and learning disabilities.

Today, Sarah and Ethan met with the ENT surgeon to talk about doing ear tubes when they place his port. The doc also recommended doing adnoids and tonsils. And we're like, okay, we understand the need. Do what you got to do. Essentially, "Do as many procedures as you think necessary." I'm not trying to imply sarcasm or a flippant or casual attitude towards this, but any idealism that we had about limiting exposure to general anesthesia or such odd went right, right out the window. 

So, you shelve the idealism, you shelve any sense of horror or regret or why me, and everything is a completely practical decision at this point aimed at giving him the best chance of survival and the best quality of life.

And in the meantime you still love your kids, and you relish every moment. I think 99% of parents who has a kid who develops medical or other atypical issues would do the same thing. They might express it differently, but the end result is exactly the same. 

So, we're focusing on the kids, and focusing on the process and we're doing good. 

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