Hopes

Dear Rowan,

I saw the images of your MRI today. I've wanted to see them for weeks. I wonder why, though.
Maybe I just wanted to see if this whole thing was real. It is real, I know that... but I guess I needed proof.
Mostly, I wanted to see your little brain. I wondered what it looked like. I hoped that maybe it wasn't that badly damaged as other baby's brains with Lissencephaly are.  I thought maybe only a couple areas of your brain were affected, but that maybe some was normal and was ready to learn- to absorb the world.
Well, my dear, it all seems to be affected...


In a way, I wanted to jump into those pictures. I wanted to stare, and look, and to be near them, I guess.  I wanted to curl up in them and examine them for some hope.  I have no idea what I'd look for- I'm no expert- but I'm your mom and I want to take it all away. I know there's no fix. I know there's nothing I can do but hold you and enjoy you... I wanted to see those pictures, but now I have proof. And I sit here wondering what to hope for.

Hope is a funny thing, though.  I doubt I'll ever stop hoping for you. I hope I'll never stop hoping.

Today I wish the medicines you're taking will relieve you of enough seizures that you're able to interact with us and to make noises and to look at us.  I also hope all of the medicines don't sedate you so much that you aren't even present.  I want that one little golden window somewhere in between.  That's what I'm going to pray for as often as I can.  I pray we can have some time with you every single day where we know you're with us and where you can understand that you're a part of this family. I want you to feel so loved, Rowan. I want you to feel safe and taken care of and I don't want you to ever, ever feel like a burden to us. God, I hope you never feel that.

I miss you more than I could ever explain- and my heart hurts.

I think I want those pictures of your brain, though, because I want every single part of you and every single memory.

Today your daddy and I are sad.  But we love you so much, my dear.

Love, Mommy.