Saturday, January 4, 2014

The What Ifs

SMA progresses.

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 :)

Lucy, chatting with Daddy after he got home from work.


Church of Peace Thursday Greetings said...

Dear, dear Barb,
You are so articulate, such a good writer, and when you put your deepest thoughts and feelings into words -- like in this post -- my heart aches with the truth of what you say. There are no easy answers to your yearnings. But there is this: you are not alone. You have the strong yet gentle presence of the Divine with you always. You have an extraordinarily supportive family and a group of enthusiastic friends. You have your SMA family and your church family. For many of us, the not-alone-ness is what gets us through from day to day. Even when we are in solitary, the truth of love surrounding us keeps us from loneliness.We cannot see into the future, but we know that whatever it holds, we will be held in both heavenly and human arms. Thank you for sharing your heart with us all. And may God bless you with the peace that passes understanding. Blessings, Jenny

Frank Pham said...

Dear Lucy's Mama,

You have got through the fear already. Keep Lucy in safe and happiness as much as you can. Lucy is beautiful like an angel and she is really an angel.
Put all your worries and unhappiness on God's shoulder and do praying with trust and faith. That's the miracle thing we can do. We live for Lucy and for her happiness, do not bring our worries to her life.
I'm so happy as reading your post today. I also have a beautiful and lovely daughter with SMA diagnosed and your feelings are the same to mine.
Thanks so much for sharing your feelings, thoughts and happiness to us. Hope everything will be fine to you and Lucy. God bless you and beside you always.
Frank from Vietnam

Helen Baldwin said...

Since 'Ethel' and I had to put our blog on the back burner to tend to life, I no longer receive updates to others' blogs. I happened to see this, tho, and wanted to respond.

You've always articulated beautifully what so many others feel in daunting assignments like SMA. I remember how stunned I was to learn we were expecting baby #3. The immediate concerns were legit - lack of money/cancelled maternity benefits, age(!), layout of our tiny house, big pond, etc., etc., etc. We quickly warmed up to the idea of a new little one, however, and deemed our concerns nothing of major significance. Good thing, as we’d need the fortitude to deal with the SMA whammy.

While I had been a believer of prayer before Jeffrey's arrival, it was the gift of his brief presence that enabled us to witness the extraordinary result of prayer and faith that God had our backs the entire time... and always. It is impossible to put it into words, but I imagine you understand.

It's probably safe to say that the parental 'worrying' NEVER ends... unless your child is safe in heaven. Even tho both of our other children are adults and have branched out admirably with their spouses to begin their own journeys, the focus of my prayers on their behalf have merely shifted :)

I just came across an article about an Oscar-nominated song that seems fitting to us all. The nomination, coming from a ‘Christian’ movie, has the libs in another major tizzy(!), but what doesn’t. Anyway, it’s sung by Joni Eareckson Tada, who is amazing. The song/movie is called ‘Alone Yet Not Alone’ -

Sending big hugs and steady prayers for you and your precious family....