Thursday, August 25, 2011

What Two Means

So now that we're well on our way to September and far past Lucy's milestone second birthday, I feel I can blog about it.  Too much pressure and expectation near the actual day.  I do my best writing randomly ;)

As I'm sure you all know, (or should if you are reading this - if not check out the SMA tab on this blog and educate yourself) ninety percent of children diagnosed with SMA don't make it to their second birthday.  Lucy has.  Lucy has made it there, past there, and will continue to make it.

Negativity is not something that will help Lucy, or help us as her parents and caregivers.  Some people choose to call their negativity "realism".  That being said, this disease is different for everyone.  What is honest-to-goodness realism in regards to one child may be viewed as unnecessary negativity when applied to Lucy's situation.  And sometimes people are just negative - for what purpose, I don't know.  Pity?  Attention?  Depression?  Any way you slice it, negativity is not going to help you or your child thrive.

Raising SMA awareness tends to be a double-edged sword.  I want people to understand the severity of the disease, but I don't want it limiting their thinking of Lucy.  Lucy just isn't a child we make fit into this world; we make her world fit her.  She's a toddler, and she likes toddler things - mainly copping an attitude when things aren't going her way.  And we do those toddler things with her.  Coloring.  Reading stories.  Watching Sesame Street.  Playing on the iPad.  And there are some things that we do for her that you don't do for your kids; keeping her healthy takes a little more than a Flintstone chewable and making sure she finishes her vegetables.  But it's our life.  We are happy.  We don't get vacation.  We don't get date nights.  Ever.  We work around the clock.  And yet we are happy.  Why?  Well, one very big reason is because Lucy is doing so well.  But it's also because we CHOOSE to be.  Whining about what should be or could be or won't be isn't going to change what is.

Now, that's not to undermine the pain of SMA.  It hurts.  It's hard.  But if you let those thoughts constantly overtake your conscious, you are doing yourself and your child a great disservice.  I wouldn't even say I have bad days; I have bad moments.  Because if you let it go any longer than that, you're just poisoning time that you could spend being happy.  And there's no one to blame for that but yourself.

I've addressed this because when you hear the above statistic, it may lead you to think that since Lucy is two, she is living on borrowed time.  To me, that's negative.  Lucy is penning her own story, with God as her ghostwriter.  Because the phrase "statistics say" doesn't mean jack around here.

Lucy had a great second birthday.  It was with family and friends (including the lovely Brianna McDanel!), cake and ice cream, and presents.  Last year, after her first birthday (a huge bash in a ballroom), I thought we would be doing something even bigger for her second, since in the SMA world it's a big deal.  But when it got closer, I didn't feel it was the way we wanted to celebrate this year.  Yes, I'm thrilled that she's beating the odds, and we celebrate every milestone - but to me, she's a regular kid.  Maybe some years we'll have big blowouts, but I'd be lying if I said I wasn't expecting to celebrate more birthdays with her.  You can call that thinking whatever you want - for us, it's our reality.  

Monday, August 1, 2011

'Twas the Month of SMA Awareness

Twas the month of SMA awareness, and all over the world
Against all new mothers, sweet babies are curled.
Their newborn clothes hung in the closet with care,
In hopes that they soon will be big enough to wear.

These babies are nestled all snug in their beds,
While visions of birthday parties dance in their parents' heads.
First bike rides, first dances, a high school graduation -
Perhaps even sending out their wedding invitations.

When at the doctor's office, there will arise such a clatter,
Specialists will be called, to see what's the matter.
Away for tests, these babies are whisked like a flash,
For it's something far worse than a cough or a rash.

Blood draws, MRIs, and so much more to go,
You shake your head, cry, scream out the word "NO!"
Something that's worse than any of your fears -
Your child's life may be over in less than two years.

"SMA" the doctors say, and you stumble on the words,
This isn't a name that you've ever heard.
Why weren't you tested, before your baby came?
Spinal Muscular Atrophy, you shudder at the name.

Now pulse ox, now cough assist, now bipap and g-tube.
They can't cough, they can't breathe, they'll choke on their own food.
To the therapist's office!  Break down insurance's wall!
Respiratory treatments, surgery, surgery for all!

As you learn your child, your worries will fly,
When you meet with an obstacle, you will fight - sometimes cry.
So up against the world, to the naysayers, say "Shoo!"
You and your child have lots of living to do.

And then, in a twinkling, your child will grow,
When all those doctors told you to prepare for them to go.
You realize that your child is the one making the rules,
And it's leaving these doctors stumbling like fools.

Though your child may never put weight on a foot,
They are stronger than most - you can tell with a look.
They are always moving forward, no time to look back,
So inspiring, they leave no time for you to slack.

Their eyes - how they twinkle!  Their faces - so sweet!
Their skin is so soft, minds as sharp as any you'll meet.
Mouths that may never utter a word,
These children don't need voices to be heard.

They have parents - our children are blessings bestowed.
To enrich our lives, to help us be bold.
To teach us that what we feel in our heart,
Is more than enough to give us a start.

To find them a cure, to show them we care,
To tell them no matter what, we'll always be there.
Fighting with doctors, with insurance, with school.
To give them the chance, to provide them the tools.

And to spread on the message, to get out the word -
Because we're their voices, we need to be heard.
Not just this month, though it's a good place to start.
Determination must be in EVERY heart.

So we'll fundraise, we'll write, we'll blog and we'll sell,
We'll bake, we'll sew, and always we'll tell
All about this disease.  Until SMA is out of sight.
And we can say - without a bipap, without a feeding pump, without a pulse ox - "My child, sleep tight."