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.