Friday, October 14, 2011

D-Day Deux

This is Lucy, with the outfit she was wearing on the day she was diagnosed with SMA.  The same day she was diagnosed - October 14 - two years later.  It's incredible to see how big she is now - or rather, it's incredible to see how tiny she was when we found out.

What's not incredible to me is that she is still with us, despite the dire outlook the geneticist delivered along with her diagnosis.  I remember standing with Lucy, looking down at her in my arms in disbelief.  I refused to believe that doctor, plain and simple.  She is not God.  And for her to have the audacity to dare to tell me how long my child will live is shameful, in my opinion.

I don't think it's fair to say that Lucy is alive because of our prayers.  Not because I don't believe that God has something to do with it - in fact, I think He has everything to do with it - but because I know plenty of parents who prayed long and hard to be able to keep their sweet babies, but ended up with different outcomes.  And it's not that I don't pray for Lucy to have a long and fulfilling life.  I do.  But it's not up to me.  I'm just glad that for now, my hopes for Lucy and God's plan for her are on the same path.

Two years post-diagnosis, Lucy has lost most of her movement.  She can move her limbs fairly effectively when suspended, but cannot lift her arms off of a surface as she once used to be able to.  She can still go for very long stretches (and sometimes take naps, tsk tsk, I know) without her BiPAP and maintain perfect oxygen saturations.  When she chokes on her secretions, oftentimes she can self correct if we get her flat.  After a tantrum (and we see enough of those, HELLOOO terrible twos!), she doesn't need me to cough her or get out the oxygen for her because she can't recover.  And she still has quite a few facial expressions in her repertoire, including a beaming smile. 

Every day I thank God for making her so strong.  Every. Day.

Given the circumstances, that may sound funny.  She can hardly move, but she's the strongest person I know.  She can't cough on her own, but she's tougher than a lot of adults - and whines a lot less than some, too.

Every day we share with her is a blessing.  I don't say that because we think our days will be limited.  We don't.  Every day that *every* parent shares with their child should be viewed as a blessing.  We are just fortunate to be more aware of that fact.

Glory be to God.  And in your face, SMA.