I'm sure this isn't imagined how your birth announcements would be. I'm certain you didn't expect your early weeks to look like this. And I don't underestimate the heartache you're going through as you try to work out what kind of a future you're going to have.
I want to say this. You have a future, and it is bright and glorious. If miracles happen, then alleluia, praise the Lord, and I know all Heaven will be rejoicing with you. But you know what? If miracles don't happen, then alleluia, praise the Lord, and all of Heaven is still with you.
Whatever happens tomorrow, next week, next year, you are on a journey that is going to be unimaginably awesome. Does that sound tactless? Possibly, and that's why I hesitate to send this. But I think maybe I still need to say it.
You will see life more clearly than ever before. You have already tasted that clarity - that first precious unassisted breath, followed by another, and another, and another. They took too long, and maybe you weren't able to be there when they finally happened. But they did happen, and they are worthy of huge celebration.
I need to tell you, that taste for celebration; itss addictive. All those milestones parents take for granted; they are going to be so infinitely precious to you. But I want to talk about the inchstones. The first time that tongue sticks out, the first time those eyes track a light, the first time fingers twitch under your touch. And there will be hundreds of those. And whether your child shakes off this early start and becomes one of those "this exact thing happened to my friend's son and he's just got a first from Oxford" children, or whether your future looks more like my past, you will find things to celebrate.
And it will be ok. It will all be ok. Even when it's not - and there were many times in Imi's life when things were very very not-ok. But our God is bigger. And He has this. And there will be a rightness to this wrongness, a peace to this panic, and asense of wonder even in the wrongness.
I could tell you things which might be helpful. I could say that Amana had a feeding tube until she was 9, that I was told she would never talk, sit up, support her own head. I could tell you her brain damage was so severe that she wasn't expected to survive infancy.
I could tell you that Imogen's cerebral cortex was destroyed at birth, that she should not have been able to see, think, communicate, understand.
I could show you so many of our friends, with so many varied and complex lives, in the hope that you could find some resonance with some of them. But I'm not sure that's what you need right now.
And so instead I'll just say this. You're going to hear a lot of things from a lot of different people. Some of it might be helpful. Some of it is going to be horrifically hurtful and insensitive, and I wish I could spare you that. You will learn to dance again. It's a different kind of dance. But it's beautiful.
Congratulations on your precious, precious child. It is going to be ok. Our Daddy says so.