Walk a Thousand Miles

"You don't have to push a handcart,

leave your family dear,

or walk a thousand miles or more

to be a Pioneer."

I couldn't get this little song out of my head yesterday as we made our way to Seattle.  I was beyond tired and my back was killing me. I have been feeling lately like a Pioneer.  The resources are dwindling fast, there is no rescue wagon in sight and I think a wheel just fell off my cart. 

       Here we are in Seattle in hopes of a better life.  In hopes that a doctor here will be able to improve the quality of life for my kids as they continue their trek through this thing we call life.  Today we continue our journey through this unclaimed and unexplored world we have stumbled into. 

       There are a few hundred children in the world diagnosed with Genetic Shwachman Diamond Syndrome and the 4 or 5 mutations associated with the gene.  There are a few thousand children in the world who have been diagnosed with Mitochondrial Disease.  There are just a small number of children who have been diagnosed with clinical SDS (Shwachman Diamond Syndrome) and Mitochondrial disease as well.  And by a small number, I mean about 20.  (Just a guess)

        Yes, this is uncharted, unclaimed and very unattractive territory we find ourselves in and although we are not alone on this journey, our little group is spread out far and wide so it really is quite isolating.  Add to that the fact that there are no distinguishing characteristics that announce to the world that something is wrong.  The kids have a full head of hair, they snowboard, they tumble, they go out with friends and they love to be social.  What most people don't see, even on their worst day is the constant and chronic pain, the racing heart, the dropping blood pressure, the pancreas that struggles to keep up.  The weakness and extreme fatigue.  Blood counts that would make a normal person shutter in fear but their deterioration has been a slow process of breaking down and falling apart.

        I think people are getting tired of this.  These reports, the ongoing drama, the never feeling well gets old.  It's getting old to the kids and talk about sick and tired. People wonder why we have to come all the way to Seattle for medical care, "Are they really going to help this time?"  Maybe not.  Probably not....but we are Pioneers.

        We are doing this in hopes that they will find something that will stall the advancements of two very scary diseases.  We are here for all the kids that are coming up in the ranks of chronic illness, that maybe they will have a better life than my kids have had.  We are here to help move science along.  We are here so that some of the smartest doctors I have ever met will see a little more into the human body and what makes us tick along. We are here because I can't do this anymore.  I can't be the only one my kids set their sights on and with sad and scared eyes, beg for help.

         In just over an hour, I will take a big, deep breath.  A gasping breath like I haven't had air for hours and then, the doctor will scoop us up in his vast breadth of knowledge and tell me that he can stop this racing freight train so out of control.  In my dreams that's how it will be but mostly he will say, he's seen sicker but at least for today, I am not alone.   This is our rescue wagon.