Friday, September 23, 2016

An excerpt from a paper I'm writing......

Ok, Oh my... so it has been a few years since I posted anything here.  I'm not sure if anyone still "follows" it.  Life and all its craziness has gotten in the way.   No excuse.   Anyway, I felt compelled to post this here tonight.  I'm not sure why.  Its nothing revolutionary....  I know a lot of my fellow SMA Dads have felt this same way, probably even written these same words, but I felt like I needed to post them here tonight. 

I'm thinking and praying for one of my fellow dads, Travis who is in the hospital right now fighting for his beautiful daughter, Stella's life.  Be strong Travis, she is strong, she will be ok.  We are all praying with you. The Father will watch over her and bring her back to health.

So, this is only an excerpt, maybe one day I'll share the whole story.... and I'll apologize up front for any spelling errors, structure and grammatical errors, and my blatant misuse of the Oxford Comma.


In the final year of my Troop Command I had a child, and I came to realize adversity like I never imagined I would.  Shortly after my daughter’s birth, my wife, Kate and I learned that she had a terminal genetic disease called Spinal Muscular Atrophy, Type 1, and that she would never sit up, crawl, walk, or run on her own.  When the doctors told us this, and told us she would not live past her 2nd birthday, my wife and I became LASER focused on proving them wrong. We did.  We developed a new hedgehog concept and became the absolute best in the World at providing our daughter an amazing life.  We recruited “the right team” of nurses, doctors, therapists, and other “expert” families to get Mary successfully past the two-year milestone.  It did not come without hardship, for 9 years I have woken every two hours at night to turn and suction her throat to keep her lungs clear of fluid.  I have given her CPR on the pavement of a busy outdoor mall when she stopped breathing.  I’ve carried her up mountains.  We have spent months in the hospital fighting to clear her lungs after an illness.  However, we have proven them all wrong. We HAVE given Mary an amazing life.  Mary is an independent, sassy, smart, and amazing 4th grader who wows everyone with her intelligence, whit, strength, charm, and kindness.  She has rock climbed, flown in helicopters, zip-lined, played soccer, and LIVED, all because her parents NEVER GAVE UP.
Mary taught me that you can accomplish ANYTHING if you put your mind to it.  Mary helps me set amazing goals.  “Dad, I want to shoot a bow and arrow….by myself”, “Dad, I want to be able to swing in my backyard….by myself”, “Dad, I want to open my windows..., turn on my lights…, play with my Barbies….by myself”.  My answer is always the same…. “OK Mary I will figure it out”.   “Dad, one more request, I want to walk….by myself”.  That is why........

to be continued......


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