In a cruel twist, your child starts out his or her life as strong as they will ever be (barring a viable therapy or cure, of which there is none yet available.) They can have peaks and valleys, they can learn to use their strength to their advantage and manipulate their body in new ways, but eventually, there is decline. That is the reality of SMA. Twitching and tics in new areas. Contractures in new joints, loosening in others. Movement slowing, stopping.
I try not to be obsessive about it; I suppose thinking that if I don't give too much credit to the fact that it's happening, maybe it will stop happening. Thinking that if I give voice to the changes, that will make them real - as if they won't happen if I keep my fears in my head. But keeping your fears contained can be a dangerous business.
I worry. A lot. Sometimes it feels like constantly. About everything. In reality, I can get through times of activity fine; school, projects with Lucy, reading stories. And I suppose it's worse in the winter - there is illness swirling all around us, threatening to sneak into our home. Reading updates on others with SMA who are sick, in the hospital, or who have taken a turn for the worse seems to be a daily occurrence.
We live a fairly routine life. Lucy adores her routine, and we've found this winter that if it's disturbed for too long, we have one unhappy little girl. The frightening thing, the worry that keeps me up at night, is that this routine that we've established, the one that brings our family such joy, is one that can be thrown into upheaval quite easily. One of us is sick, Lucy is quarantined to her room, and it's done. But what if something *really* threw our life into chaos? What if something happened to Noah? What if something happened to me? And what if something happened to Lucy, something I couldn't save her from?
I always tell people you can't focus on those thoughts, there's no point, it's not helpful. And there isn't, and it's not - but in the wee hours of the morning, it can be hard to think about anything else. I read in another special needs mom's blog post recently that as a special needs parent, you're always waiting for the other shoe to drop, and I really felt that finally my feeling had been articulated. You've been the recipient of some horrible, earth-shattering news. You grieve it, dust yourself off, do what you need to do for your child. You build a life, and in our case, it's a wonderful life. It's a life I love so much, and feel so blessed to live - and I think that might be why I'm so worried. Because the better I have it, the more there is to lose.
I was reading the story of Christ's birth this morning, and got to the part in Luke where Mary and Joseph run into Simeon in the Temple, and he tells them how great Jesus will be. He also tells them that many will oppose Jesus, and that "a sword will pierce [Mary's] very soul." How must that have felt? To know that there would be that kind of pain lying ahead for her? And that the pain would have to do with her child... I don't know that there could be a greater pain. And that's another thing I worry about. Possible pain. Possible horrifying, excruciating, unbearable, unimaginable pain. And I stuff all that down too, because I fear that giving voice to it will speak it into reality.
So I've been praying about it, a lot. Obviously, to keep our little family safe, and healthy, and to help us get our home into the safest possible environment for her, but also for trust, and faith. These things are present in me, but they need to be built up. Facing a monster like SMA means that they need constant shoring. And I don't think that's something I can do on my own, so I'm asking for your prayers for me, this time. Pray that I learn to let God shoulder the fear and anxiety at all times, not just times when my mind is preoccupied. Pray that I can retain the healthy knowledge and awareness that the fear may give me, but shed the crippling aspect that it can have.
And thank you for always praying for Lucy. She has had a healthy winter so far! We're in the north, so this season is far from over, but we are hopeful that with careful germ avoidance, and keeping her away from all ill people, we'll be able to emerge in spring with a healthy, happy, well-rested Lucy bear :)
Saturday, January 4, 2014
Posted by Lucy's Mama at 8:26 AM