One Phone Call {Y3W}

I've had a bad week. Not dealing with Reagan's illness too well. But then I started to feel better. We've had beautiful weather and spring has sprung. I had decided that I'd blog about that today. Then I got a phone call this morning that gave my mood a 180. It was Reagan's endocrinologist. Her glycine level has climbed yet again. Increase the sodium benzoate and we'll see you in May. Click. Like it didn't matter at all. I burst into tears. The increased glycine levels are what causes brain damage. When she was in a coma and being ventilated, Reagan's glycine level was 1100. Today it is 574. That's getting too close for comfort for me. I immediately started to wander to those places that scare me.

What if we can't get it down?
What if she starts having seizures again?
What if she suffers brain damage?
What if she dies?

I realize that aside from medicine, there's nothing we can do for her. But it's the natural tendency of a mother's heart to start to worry. I don't know why. It does no good. My grandmother always said worry is like a rocking chair. It gives you something to do, but gets you no where. True. But how do you stop it, especially when it's your child's life at stake?

I sometimes wonder what it's like to have a baby and not have to deal with these issues. What's it like to come home and not have your world come crashing down 24 hours later? What's it like to spend the first few weeks of your baby's life at home with family and friends instead of in a NICU fighting for life? What's it like to be able to breastfeed instead of tube feed?

It's the hand we've been dealt. We have to play it. There's no "fold" option here. We have to hold 'em. But I get upset when I think about the life that we were "supposed" to have. Then Reagan sees me crying and she gets upset. She's so sweet. I love her so much. Even if her body doesn't function as it should, she's perfect. Because God makes no mistakes.