The possibility she might die

It’s pretty late. I actually went to bed at 8 but apparently I didn’t tell the mommy fairies that I was punching the clock for the night because they’ve kept me up till midnight with boys in the bed and Grace requiring a much needed yogurt snack at 11. Who doesn’t love yogurt in the middle of the night?

As I type this I can hear her squealing in her bedroom.

Naturally, when I’m awake at night I think too much. Usually about photography and business, but tonight is different. Tonight I’m thinking about death. Cheerful, I know. And strange because I must think about this a lot more than I realise. I think I used to cry when I thought about it. I must have. However tonight, I’m not. It feels like something I must think about every single day.

When I was young -too young to have children- I had this dream. I’d given birth to the most beautiful little girl. I saw her face so vividly in my dream. I wrote about it in my diary in the morning. I remember writing things like “peachy skin”, “the softest cheek” and “the bluest eyes”. But as I stood in this hospital corridor admiring my little girl, someone began to wheel her away and glass doors closed in front of me. I just watched her disappear forever and I woke up with the most painful ache in my arms. It’s not like I had a husband I could turn to in the morning and say “honey I want another baby”. Heck, I probably wasn’t even out of high school when I had this dream. The possibility of ever actually ever being a mother to that dream baby was…well…impossible.

The ache I felt in my heart when I had that dream was never fully resolved until I was handed Grace. Fresh out of my tummy, I sat her up on my chest and felt -ok NOW I’m crying!- I felt like my dream baby had found her way into my arms.

And then, 6 months later, she

My dream had turned into my nightmare.

But not really. Because I still have her in my arms. I can still kiss her softest cheek and get lost in her bluest eyes.

But behind all of this happiness that I still have my Grace is the fear -no, not the fear- the possibility that she might die. It’s the thing that hangs between every Rett parent. Between our hellos and our goodbyes, there are the whatifs.

As a Christian, it’s quite taboo to admit that you have a fear. I use the word fear carefully. “Fear” usually brings a “tsk tsk, now now” response. “Just give it to God” they say. “God wouldn’t let that happen” they say. Yea, well God let Rett Syndrome happen. I say that carefully as well. I know that I know that I KNOW that God didn’t MAKE Rett Syndrome happen. And I’m not so sure our family would even be better off if he hadn’t let it happen. Somehow, I appreciate what Rett Syndrome has done to my family. But that’s for a different blog post. Basically, you need to know this: I trust God and I am secure in the fact that he knows what he’s doing. There’s so much more beyond this life. Don’t us humans place the most outrageous importance on what happens in this life? How happy we are, how healthy we are, how rich we are? This is just the most microscopic blip on the meter of eternity.

When we saw the geneticist to find out more about Grace’s mutation (R168X), she said something quickly about it “not being a mutation particularly associated with sudden death”. Sudden WHAT?! Death? Who said anything about death? This stunned me. This realisation that this happens. Rett Syndrome can kill. It’s why Grace is even accepted into the hospice for children to give us respite once in a while. Because she has a technically “life limiting condition”. It’s why girls with Rett get wishes granted by Make a Wish. Because they might actually be dying.

Those on the outside of Rett Syndrome don’t really know the gravity of this possibility. The uncles you see once a year who pat you on the back before going out for a cigarette, muttering something about “don’t worry she’ll get better”. I hope statements like that make people feel better about not actually getting involved. Because genetic mutations don’t just get better.

However, those on the inside of the Rett circle? We see it all the time. All the R.I.P posts about another girl or woman with Rett who has “earned her wings”. It happens. And it’s quite often unexpected. Like sweet little Livvy. Her mum blogs about her and wrote in a letter to Livvy:

“The day your body died, I remember holding you, so peaceful and still. You hadn’t been still. Your body moving no matter how much you didn’t want it to. Now you were still with a beautiful smile on your face. Peace.”

And when we went up north to visit another Rett family last year and the mum revealed to us that her daughter had many of the different elements that add up to sudden death. Steven disappeared moments later and I found him in the caravan crying his eyes out. Crying so hard. I know he was crying for this amazing family we’ve now come to love dearly. And we never talked about it after that, but I think he was also crying at the sheer realisation that this happens. That at any time, any given morning, any one of us Rett parents could go in to get our girls up for the day and she be, as Sara described in this post about Livvy, “so still. so very still.”

There are mornings where I can’t bring myself to go into Grace’s room until I’ve heard her first. And then there are mornings like one morning last week where I find Grace impossibly still. Rigid, even. With her eyes wide open and not moving. Only to find that she’s holding her breath. Or, rather, that her body is not allowing her to breathe. And a few seconds later, she has relaxed back into herself and I can stop holding my breath, too.

This isn’t a fear. It’s a possibility. Grace has Rett Syndrome. This we know. God allowed this to happen and I don’t know why but I have faith in Him. I just don’t know if he will some day also allow her to go to Heaven before we’re ready to say goodbye.