Saturday, April 28, 2012

Baby Avery's Bucket List

My normal morning routine involves getting up and stumbling downstairs, settling down in front of the computer to catch up on Facebook and the news while hooked up to the "machine" (I really need to come up with a good name for it.  I'm leaning toward "Bessie").  Today, as I'm scrolling through Facebook, I came across a link to a blog about a little girl just a month or so older than Liam.  Like this one, it chronicles Avery's adventures from day to day.  However, Avery's adventures are her bucket list, as she is unlikely to survive to her second birthday due to a genetic disease, spinal muscular atrophy (SMA) - the number one genetic killer of kids under the age of two.

Photo copied from Avery's Blog -

So I started reading through the blog, and immediately the tears started to flow.  How can I not sit here and make comparisons to my little one as I read through this? I wonder if faced with this same type of devastating news if I could be as positive, as compassionate and as proactive in trying to educate people as Avery's parents and family are.

I read the second half of the blog through teary eyes while holding a sleeping baby on my chest.  How can I even remotely complain about a baby fussy from getting his shots yesterday when in reality, I should be thankful that all is well.  He has a cold?  Doesn't sleep through the night?  Might be teething?  Talk about putting everything in perspective. We are so blessed, so lucky, and everything else takes a back seat to remembering that.  Instead I'll think about how lucky we are to see every smile, to celebrate every milestone and to be able to make plans for the months and years to come.

Now, I'd never heard of SMA, and apparently I'm in the majority there.  We did genetic testing during our pregnancy because I'm a planner and hate the unknown (although I do know nothing is 100% accurate).  Apparently SMA is not part of typical genetic screening despite the fact a simple test exists and in many cases it is even covered by insurance. (I have no idea if it was in mine or not).  1 in every 40 people carry the gene, and if both parents are carriers, there is a one in four chance that the child will develop SMA.  Avery's family's goal is to help educate people about SMA and to help encourage and fund research on this disease. In light of the stresses, pressure, and heartbreak they must be feeling, I find this amazingly admirable.

If you get a chance, read Avery's blog, but be sure to have some tissues handy. 

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