Tuesday, May 01, 2012

Bucket Lists

I fight for SMA and with Getty Owl because I believe with all of my heart that no other family should ever be blindsided by a diagnosis of SMA.  No other family should have to decide how far they will go with their child's care.  No family should have to be told that their child may only have less than 2 years to live.  No family should have to fight with and EDUCATE doctor's on their correct treatment for their children.

I can never stand in a SMA families shoes.  I'm never going to know what it's like to deal with that on a daily basis.  I'm never going to know if I have the strength to do it.  Because of that I feel like I need to stay neutral on many things because what it honestly comes down to is I am never going to understand...I'm only going to imagine.

The past few weeks SMA has been getting a lot of attention because of a girl name Avery.  Avery was diagnosed with SMA and like many parents, Avery's decided to turn to the internet.  They may have done it to just spread information to their families, they may have done it with a bigger hope in mind.  Whatever the case may be they started Avery's Bucket List and it spread like wildfire.  

I will take a stand on one thing here in that in the beginning when I first found out about this site I didn't think the parents had all of the information correct. There were comments on lack of research that were not correct, there were also some comments made that I found potentially hurtful to those that have chosen a different path for their children than Avery's family did.  

There were good things too.  There was promotion for testing and an overall promotion of awareness.

In the past few days I have seen more information and talk online about SMA than I ever have before.  My Facebook wall is full of SMA right now.  Here is my hope, that it doesn't die out.  I hope that the passion that Avery's website stirred sticks around and everyone keeps their fires burning.

I have an even bigger hope though, we'll say it's the top item on my bucket list.

Harmony.  I know that sounds so ridiculous.  Here's the thing though, none of us live in another's shoes.  None of us knows what someone can and can't handle.  None of us can know everything that is going on behind the scenes.  The internet is both a blessing and a curse (and there I go sounding 80) but it's true.  We are only looking through the peep hole of someone's front door, there is no way of knowing what is going on in the other rooms.  

Here is what we do know.

We all fucking hate SMA.  Whether you are living with it, your child lives with it, your friends live with it...this disease sucks.  We don't have to agree on ANYTHING other than that.  If we agree on that then we can come together to fight this damn disease.  There is a reason that it takes an army to win a war.  What happened in the last few days really opened my eyes to the fact that this army is VERY divided.  My hope is that we can find harmony and come together to kick this diseases ass.  


Laura Zanoli said...

Stacey...this blog took the words right out of my mouth! I too saw the lack of information but it seems that they have been correctly informed now and lastest posts show that they know how close we truley are to finding a cure! Harmony would deffinitly help this army fight the war on SMA! It looks as though many that have been divided are starting to realize just that and are coming together!! Top of my bucket list... For there to be no more SMA angels, only warriors whom will kick SMA's ASS!!

BlabzFamily said...

P.S. I'm new here & just getting started with the great world of Blogging ~Laura Zanoli :)

Duffy said...

I tried to read Avery's blog, but honestly I can't handle it. You are so strong to give so much to your friend and all these little babies. I am not typically one to shy away from tough subjects, but while my kids are so young, I just can't read or talk about the death or such of little ones. It's not that I don't want to be educated, I do. And I want to donate and more....long story short, I couldn't read her blog. Do you mind telling me what the hurtful comments were? I am curious....at the short glance I took, the parents seemed to be very loving and doing their best to cope. I am especially curious since they are in Houston and I am familiar with a lot of the vendors that they mentioned.


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