Saturday, November 6, 2010

The War on SMA

This month on facebook (of which I am an avid user; being sequestered at home has made this necessary to retain a modicum of sanity) there is a little activity called "30 Days of Thanks."  Really, we should count our blessings every day all year, but November's big holiday seems to bring out the gratitude that can otherwise fall to the wayside.

There are many things I am thankful for.  I think if I listed them all here, I would go from a handful of followers to zero faster than a SMA mom sprays hand sanitizer at a newcomer in their home.  So, I'll go with something that is new for me to be thankful for this November: my SMA family.

Last November, we were only a month or so post-diagnosis, so we were still stumbling through what it meant.  I was directed to an online community by a very devoted SMA caregiver/grandmother.  This online resource, SMAspace, has been a Godsend to our family.  Through SMAspace, we were introduced to other SMA families living all over the world.  Suddenly we did not feel so incredibly isolated, so freakishly alone.  How is it that I'd never heard of SMA before - there are hundreds of families on here (actually, well over one thousand)!  Having people who are extraordinarily knowledgeable - moreso than most doctors on the subject of SMA - and compassionate at our fingertips has made a stunning difference in how we perceive the disease.

Our kids can go tobogganing and skiing; they can swim and run marathons and write books and make straight A's in school.  They are shining lights, and the one thing every family has in common is that they would do anything for their child.  Leave no stone unturned, no mountain unmoved in the pursuit of what these kids deserve out of life, whether they feel that's making friends in preschool or a cure for this disease.

Every family has different views on how to attain what can sometimes seem unattainable, but we all have the same goal.  Whether we come out and say it or not, every family wants a cure or viable treatment for their child, in their lifetime.  Some families may not feel this is realistic; this doesn't mean they don't dare to hope.  Some families refuse to believe that this isn't a possibility, and they are not wrong.  ANYTHING is possible.  The healthiest person in the world could have a plane land on their house tomorrow and kill them, and the weakest child could have a lifesaving therapy performed on them next year and outlive their parents.  No matter what studies say, parents say, outsiders say, organizations say is going to happen tomorrow, a month from now, a year from now - the thing is, we will never be sure of what the future holds for us.  And our human nature sometimes cannot handle that.  We want desperately to be sure of the future, and what it holds for us and the ones we love.

Some channel that want into fundraising, because at this point, there's really not a whole lot else us as parents and supporters can do to move towards what we want for our children.  Some channel it into raising awareness, getting the word out there, letting the world know that this IS preventable; it IS realistic to hope (and all the while, that hope is becoming more and more of a reality.)  Some (all, really) put everything they have into their children, fulfilling their needs and wants as best they can, adapting everything about life to suit their needs.  A quote posted recently sums it all up: "I thought I would have to teach my daughter about the world; turns out I need to teach the world about my daughter.  They see a girl who cannot talk, I see a miracle who doesn't need words."

Whatever your stance, however you approach this disease, whichever road you take in the pursuit of your dreams for your child, please know that we ALL want to end up at the same destination: the end of SMA.  The wounds left behind will always be felt, like battle scars, but the war will be over - and we WILL be victorious if we fight it together, remembering the slogan "no man left behind."  We must fight for the weakest of the weak, EVERY child with SMA, because every child is precious in God's eyes.  It's only a victory if it can be savored by all.

Love to everyone in my SMA family, I am forever thankful for each and every one of you.