This week, as so often before, beautiful, loved children were taken from their families. Sometimes, there’s been a while to adjust, it seems, though what do I know? Only that their daughter has been sick awhile, but do they adjust? That’s a horrible word. Maybe accept? Prepared? Horrible, horrible words. Maybe scream everyday, “please don’t take my child.” But, it’s there in the back of all our minds-our daughters and sons can get that sick.
I read the Facebook updates and you know that sweet baby/girl/ boy will not be long in this world and I know all the parents reading it are heartbroken for their family. These boys and girls who we’ve seen pictures of laughing, smiling; videos of accomplishing something new, cheering them on from a distance; how dear each becomes. And oh, the fortunate ones who’ve met them, how unfortunate they are now, when those little lips they kissed are now silent; my heart hurts for them as well-those other Rett parents who join the group of- I knew them, they were not unlike my own.
And then those wonderful children who are healthy,their mommas put them to bed, snuggled, breathed their sweet scent, gave them kisses and told them all about tomorrow, because they believed it would come, and it didn’t. That’s when it is an arrow to your heart. As one mother put it “sometimes with Rett you just die from Rett” no warning, just gone.
And I wonder what would I do, not in that very moment but after..where should I bury her, should I put Fox with her? No dresses for my girl, but a nice pair of jeans, with bling and a new pair of shoes,pretty ones that don’t need an ugly lift. And, yes I’d do her nails, in purple, and I’d braid her hair, and still be gentle when I brush it because she doesn’t like it when I pull the snarls. But what shirt? And please, please don’t do an autopsy, don’t cut my girl. Will there be room for Pooh, to keep her company in the coming years. And pictures to remind her soul how much she was loved.
I wonder, what will I do with my days, the hours and minutes when there is no “mommy” to answer, no owie to kiss away, no hand to hold, nor sleepy head on my shoulder.
I wonder, if my heart can bear it.
Why do I wonder? Because it can happen and it scares me so; I need to prepare myself, make myself understand there is no guarantee that she’ll wake up on any particular tomorrow. I don’t dwell on it, though I used to, but I can’t help it when another child is lost.
I don’t believe in God, but if I’m wrong, I’m sure my girl will go to Heaven.
So, for all the mothers and fathers who are mourning-
“PRAYER FOR A VERY NEW ANGEL”
God,God, be lenient her first night there.
The crib she slept in was so near my bed;
Her blue-and-white wool blanket was so soft,
Her pillow hollowed so to fit her head.
Teach me that she’ll not want small rooms or me
When she has You and Heaven’s immensity.
I always left a light out in the hall.
I hoped to make her fearless in the dark;
And yet, she was so small-one little light,
Not in the room, it scarcely mattered. Hark!
No,no; she seldom cried! God, not to far
For her to see, this first night,light a star!
And in the morning, when she first woke up,
I always kissed her on her left cheek where
the dimple was.
And oh, I wet the brush, it made it easier to curl her hair.
Just, just tomorrow morning, God, I pray,
When she wakes up, do things for her my way.
VIOLET ALLEYN STOREY
May a cure come soon.