Friday, July 23, 2010

It is absolutely who we are, but it certainly doesn't define us.

I'm struggling with where to start tonight.

Things aren't bad, don't start worrying. Jackson's doing much better than last week. As a matter of fact, he's once again exceeding all expectations of health. We finally adhered to some 'tummy time', and he promptly responded by rolling onto his back, and then back to his belly, and then he was like an unsptoppable weeble, pitching every which way. I began to realize how close we are to having a mobile baby. He's discovered his feet, and spends a good deal of time trying to get his tiny pink bubblegum toes into his mouth. He has learned how to shriek with joy...and irritation. He's fast showing all the signs of having the familial opinionation, to our great entertainment. Except for a few brief, nerve wracking moments now and again, he is astoundingly normal. He is a sweet, salty, butterball of bliss and slobber.

The whole family is doing well, in fact. EM is gearing up to start at her new school, the house is coming together, Mike's finished training and starts ambulance shifts tomorrow morning. We got a puppy. (She's shockingly well behaved) Our relations with my ex husband are even cool and personable. Not that I'm waiting for the other shoe to drop, but it's actually hard to believe how smoothly things are going for the most part. We had a great turnout for the Chili's Gives Back for Cystic Fibrosis event the other night. Photobucket

I have kind of extricated myself from the online CF forums I inittially dove into for a sense of community. There was too much a sense of panic among the parents there. I have, though, begun to meet (if only virtually) other CFer's and parents. It's quite possible I sound like a lunatic to them, but I feel bonded to these near-perfect strangers, and follow their trials and triumphs with my own heart. Through the development of CF related Diabetes (CFRD) and double lung transplants, PICC lines, feeding tubes, I listen, I feel, I pay attention, and I try to prepare myself. I wonder often what Jackson's future will be like. I know of a 13 year old girl who has only had 3 hospitals stays in her whole life, and I know of an 8 year old girl who has already had her FIRST double lung transplant. Where will my son fall? Are we over-celebrating his current robust health? Will he get sick and lose all those glorious rolls of sweet, soft baby fat? Will he need new lungs before he goes to Jr High?
I don't get hyper-focused on these what-if's. They don't run me, they don't run our lives. But I'd be lying if I didn't admit they were there. I often think I've figured out how to feel about all of this. About having a son with this disease...but sometimes it sneaks up on me. I think it's perfectly normal to carry the sadness without being a sad person. More often I have to describe to people that living in our house is not a constant barrage of sadness, fear, and disinfectants. Contrary to popular belief, we have a pretty damn good life, and it's relatively normal day to day. (While Emily is aware that her brother needs a little more intensive attention sometimes, she isn't hungry for attention by any stretch. If it seems that I don't mention her in this blog as much as I do Jackson, I have reasons to be a little more protective of her privacy)IMG_6924

I get sad, but I am not a sad person. I am struggling a bit to find the balance between positivity and honesty with myself. Sometimes it's hard to tell an ugly truth to beautiful people. I hate that my Mom worries about how I am. I hate that if Jackson gets sick everyone who's seen him in the last two weeks fears they gave him something. I hate that he has to live with it and I'm just a spectator to his disease- I hate that he suffers because of something that came from my body. But again, I think all of these feelings are healthy and normal. I'm just winding my way along the learning curve, learning clumsily how to coexist with the dark little recesses where positivity doesn't reach. For now I'll keep looking for the perfect moments, coping with the scary ones, and living all of them.

Let's end on a good note, shall we? A Friday afternoon toast. Cheap champagne and fresh squeezed oranges, because it was quiet, because it rained, and because we could.

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