Wednesday, October 20, 2010

Sing, Sing a Song

Lucy LOVES singing.  More accurately, she loves hearing someone singing.  If you ask her "Lucy, do you want to sing a song?", she gets a huge smile on her face and hoots her enthusiasm.  Occasionally she will participate, humming along or huffing excitedly at certain parts.  Most of the time she will watch your face and mouth intently, so I try to give her a lot to look at, exaggerating syllables and basically acting as insanely over the top as possible.  (Unless it's bedtime; there's no unnecessary stirring of energy reserves at bedtime.) 

It's so fun to watch her face while you're singing to her.  Her current favorites are the ABC's, 'I Don't Want to Live On the Moon', and 'The Ants Go Marching One By One'.  I can sing these over and over, and there doesn't seem to be any exhaustion of their appeal in Lucy's eyes.  Because she hears them so often, she recognizes the different parts, and she gets excited in anticipation of her favorite sections.  Just lately, she's started singing along before you even get there, in particular during the ants' march.  Right before the end of a verse, she'll start in: "buh buh buh buh" (which is Lucy-speak for the boom boom boom that signals the ants marching down, to the ground, to get out, of the rain :) )

It is amazing to watch Lucy learn something.  To be the one who is helping her learn makes it that much better.  I could never be as proud of any personal accomplishments as I am of what Lucy can do.  Seeing her comprehend something for the first time makes the hours of singing Barney songs over and over worth every minute.  Seeing her face light up when I ask her if she wants to sing a song makes my heart soar.  That I can put such a smile of pure joy on my baby girl's face is the greatest gift God has ever given me.

Thursday, October 14, 2010

Living, Loving. A life for Lucy. (The Eyes Have It)

Fitting - my first blog post is on D-Day.  No, not the day the landing operations for the Allied invasion started in Normandy... the day our lives were forever changed, our hearts forever shattered with the realization that our only child has a disease that is going to try to kill her.  Diagnosis Day.  We have pieced our hearts back together in the year that has gone by, but they will never be the same.  How could they be?

I'm a huge fan of alliteration...  for me, it gives a statement a little more impact.  And while there are other important things in my life - God, for instance - in our day to day, the reality is that we live for Lucy.  I believe it's what God set me and my husband on this earth to do.  Treatments, therapies and play fill our days, from waking to drifting off (drifting on the good days; on bad days - over tired days - it's Lucy whining herself to sleep).

Lucy is our daughter.  Lucy just turned 15 months old.  Lucy has SMA.  Unfortunately, the last statement is a defining characteristic of who Lucy is.  As much as SMA can hurt us at times, it is an intrinsic part of Lucy, and I could not imagine my baby girl being herself without it.  Would I like to see a cure for SMA?  Heck yes.  Do I wish Lucy had been born without SMA?  That question is a little more in the gray area.  I wish Lucy didn't have to go through breathing treatments every day, endure isolation during the winter (re: germy) months, and could enjoy simple things others take for granted, like eating by mouth or running away from her mama.  BUT, I just don't think Lucy would be as sweet, as soulfully observant, or as captivating as she is without SMA.  This hideous disease forces babies to communicate and thrive on different levels than average babies.  The attention they can pay to things in front of them is incredible, and it's as if you can see the gears grinding away behind their eyes.

I don't know if Lucy will ever be able to communicate conventionally with me.  Right now, all she can manage is "bababa".  I would contemplate severing a digit to hear her say "I love you Mama," but as it stands, I don't think it would do me any good.  Plus, my newfound blogging hobby would be significantly hindered.  However, Lucy has her eyes; her big beautiful eyes that can speak volumes.  Eyes that can share thoughts and emotions that she wouldn't be able to put into words yet, even if she had a vocabulary.  And until I win that multimillion dollar lottery and fund the cure, I consider myself blessed to be the one those eyes are focused on.