Emotions.

I am not usually an emotional person. I've been told I have the emotional equivalent of a rock...no emotion. Right now I am sitting at my computer, at 10:32 pm after just finishing an appeal letter to our insurance company to reconsider their denial of payment for genetic testing, feeling a bit heavy-hearted, for some reason and tears welling up in my eyes.

Maybe it's because in writing this letter I reviewed medical evaluations, re-read tests and charts that showed how my little boy's nerves in his arms and legs are not communicating to his muscles. I remember vividly going into the Neurologist's exam room and watching her conduct the tests on my little six year old. I remember him laying on the exam table, trying to distract him as he was repeatedly shocked with something that resembled a glorified cattle prod. I remember the Neurologist having to increase the voltage because she was not getting a reaction from his nerves. I saw my brave little boy try his best not to cry, but wiped a few tears that streamed down his face. I remember looking up at the computer monitor, knowing that the way the graph was measuring that something wasn't right. I deduced that if one was having a nerve test to see how fast nerves were communicating to the muscle, that a long lapse and then a movement wasn't a good sign.

I sat there as he whispered to me - "Is it over yet?" with a quivering chin. I do remember afterward the Neurologist talking with me and words hanging in the air like degenerative nerve disease, no cure, muscular dystrophy, surgeries, MRIs. I remember trying to wrap my head around what was happening. I was given a script to schedule Tyler's MRIs, which I held in my hand as I walked numbly to the Radiology department.

I will never forget waiting to schedule his brain and spine scans and looking over at this little boy playing in the corner... my boy, who happened to look up at me and smile and wave, having no idea how much my heart was breaking for him. It took all I had at that moment to not collapse on a chair and cry. I was sad for him. My sweet blond haired, blue-eyed, gray-toothed monkey had a bit of a long row to hoe, and it wasn't just for a little while. This would be a challenge he'd always physically have.

As we walked out of Primary Children's hospital that afternoon, his hand in mine, I knew that this would be a defining moment. I was to choose how I would act when life happens and plans change - which they always do. I decided this was not going to be any easier if I fell apart in front of him. It was time to walk the talk. It was time to 'put my shoulder to the wheel'. So we walked out of the hospital, hand in hand, talking about Star Wars. My tender-hearted warrior and me.