In the hopes of boosting the twins’ lung development I had my second dose of steroids today. Side Effects of Steroids so far?
1) Hot Flashes
2) Insomnia (I literally can’t even relax) (and therefore have far more time to “think” than I would like)
3) Some new fight in my veins
Well, I’m doing it again. Inch by inch I’m climbing my way back up a hopeful ladder. Part of me knows I shouldn’t. I know we have concerns about Nolan even surviving until birth. I know we have concerns about how their little bodies will respond when I’m no longer keeping them going. I know we have concerns about their brains being able to communicate to their organs effectively, about motor function and cognitive ability, about visual and hearing impairments. About life. I know. Trust me, I…know…
And I’ve spent far more time the last 36 hours thinking about what we would do if we lost one or both boys than I ever wanted to.
But I’ve also been searching hard for someone who had Dandy Walker AND Lissencephaly. And I found him. He may be an exception, but he exists. His a beautiful little boy with a bright smile. His journey hasn’t been easy, but he’s now four months old. He’s little, he’s behind, but he’s a fighter, and he’s making progress. And he’s bringing unending joy to his family.
Someone else out there shouldn’t be…but is.
I know I may be setting myself up for devastation again, but are you ever really mentally prepared for worst case scenarios? And if the answer is no, is there ever a good reason to accept them early? I think for now, it is more important that I have some authentic hope left in me. That I pump that hopeful blood through these boys. That they feel that their mama hasn’t given up, and that they take a little bit of that hope and fight and keep it with them even after we’re separated.
Keep fighting boys…mama’s got your back.