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.  


gettyowl said...

She always looks so happy and spunky, it's probably hard to stay negative around her for very long. Great post!