When you've been there and back so many times, you lose track of which level you are on. And forget ever finding your car in the parking garage.
I see how tired she is. Not how tired she gets, she IS tired. I listen to her fight for breaths - I counted 48 in a minute earlier this evening. Fast, shallow breaths. It should be 12-20. So I tried 20 fast, shallow breaths and that was all I could manage of that kind of breathing...it was tiring. But this is her everyday, her every breath. And the more her skeleton moves, the worse that this gets.
And I see the physical appearance. This shouldn't matter, right? But it does. She's 15. She already has enough appearance-wise that draws undue attention...she doesn't want more. There is one word that I hate so much, I've hated it for 15 and a half years. When doctors say it, I stop them and give them an alternative. I asked for this word to be in her medical files as one that is not allowed to be said to her or about her. I cringe when I hear it anywhere. But now it is all I can think of when I see her back, her shoulders, her core. Deformed. And I hate myself for thinking it. What kind of mom outlaws a word and now it is the first word that comes to mind? But a word that is pure hatred to me is the best word to describe this current situation we are in. If you would see the pictures, I wonder how many would think of this horrendous word immediately.
When I went to Boston, I wasn't looking for more to be wrong. I wanted confirmation that the Duke doctor was right and that she's okay and waiting for four months, then six months, then so on was the way to handle this. But I knew. Just like I knew the minute I found out that I was pregnant that things were not okay. And all of the other mama gut moments I've had with her over the years.
In the end, this all comes back to me. I wanted a baby. And sometimes I feel so much guilt over that, I can hardly breathe. I've worked my ass off to give her the best life I possibly can. To make the best medical choices I can with the information I have at that moment. I have failed her many times. I have failed myself many times. Some days this journey truly sucks everything I have out of me. But I continue to fight for her life, just like she fights for every breath she takes. I go to hell and back with her every time, and I always will. No matter what level or which trip it might be.
Chiari, Goldenhar, Restrictive Lung Disease...complications from any of these could bring this journey to a devastating halt at any time. We've been warned by several that getting the flu right now could put her life in jeopardy. Although we can't dwell on any of this - we could walk out the door and get hit by an asteroid tomorrow too - a mama never completely loses sight of these things.
But we continue to try and choose happiness every day. We try to find the silver linings and hope for a pot of gold. Because we have to. How else could we go on every single day? Life ain't always beautiful, but it's a beautiful ride.
