B is for BRAvery

I read a story recently that positively changed my life.  It is actually another blog called ‘Avery’s Bucket List’ and can be found here http://averycan.blogspot.com/.  This blog is a bucket list written by a 5 month old’s father, from her perspective.  Unfortunately, as the fates would have it, baby Avery was diagnosed with SMA (Spinal Muscular Atrophy), an incurable genetic disease that affects motor neurons of the spinal cord and brain.  SMA affects muscles in the limbs, as well as muscles that allow for breathing and swallowing.  Between 1 in 40 and 1  in 80 men and women (with no symptoms of the disease) carry the gene for SMA, and if a man and a woman both carry the gene, there is a 25% chance their children will have the disease (not just the disease). 

            This is not one of the more ‘fashionable’ (for lack of a better word) diseases that people know about and thus it is uncommon for people to ask their doctor to be tested.  This is the real epidemic. SMA kills more babies than any other genetic disease.  This is extremely disheartening, when it is so easy to be tested and find out if you are a carrier, just ask your doctor!!  Baby Avery (or BRAvery as her parent’s called her) was so amazingly Blessed to have such loving parent’s who told her story and tried to fill her days up with as much laughter and joy as possible.

            I am not a parent, so I can never even imagine what they could have gone through.  But these people, whom I have never met, have inspired me and impacted my life more than I am sure they thought was humanly possible.  The original intention of the blog was to be a personal memoir for their family, but once it went viral, it was to spread SMA awareness.  Well, congratulations to the Canahuati’s, because we are now aware!  SMA is in the spotlight and it is not going to fade off or hide until people make serious strides and advances into curing the disease. I could never fathom how I would act in a situation like theirs, bringing an amazing little girl in the world only to find out that she will not make it past her 2^nd birthday if even that far.

            Avery’s parents were thrown into action!  They did not want to wait around and mourn their daughter’s short life while she was still alive; they wanted to capitalize on every single second they had with her. Enjoy every minute they had with her rather than mourning the future moments they wont get to have.  One of the quotes that was posted on Avery’s blog that her father would tell her was ‘you can live life dying or you can die living life.’  That is the quote of a fighter, a strong family that wanted to make the most of the short precious moments.  Avery’s parents put together a ‘bucket list’ of things to do before she died (ignoring age as a factor) and they made many of those dreams come true; complete with pictures so her SMAns (SMA + Fans) and fellow bloggers could follow.  I felt that this was extremely uplifting and heart warming.  Avery was surrounded with more pure and genuine love, fun, and had more fight and spunk in her 5 short months than most people see in an entire lifetime.

            I would just like to thank the Canahuatis for opening my eyes to SMA, and for sharing their story.  Their journey has been a difficult one, but I can only hope that whenever faced with a trial or tribulation in life, I can have even a fraction of the strength they had!  God Bless the Canahuatis, and baby Avery who has unfortunately left this world and went on to the next.  Please visit their blog and spread the word about SMA.

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there have only been one set of footprints in the sand.
Why, when I needed you most, you have not been there for me?”

The Lord replied,
“The times when you have seen only one set of footprints in the sand,
is when I carried you.”