Will someone please remove the knife from my heart....round 2 of the neuromuscular clinic tomorrow Sept. 4 2015

Maybe this time we will find another clue to the mystery of Jack's disease, or better yet a diagnosis when we attend the Neuromuscle clinic tomorrow at Colorado Children's hospital.  Most likely we will head down the same old familiar road  of endless MRI's, EMG's ( which are painful) and another request to do a muscle biopsy, which I just can't put him through again.... 3 years later the fear of the unknown has only been exacerbated by 6 hospital stays this year and more flare ups than ever before.  But I haven't lost hope of finding a diagnosis for Jack and will continue to fight the phantom demon of a syndrome without a Name for Jack and all the other kiddos out there fighting for their lives!

God is good... I will continue to praise him in he hallway until  another door opens...

Repost from Nov. 2012........I would still like someone to Please Remove the Knife from my heart

For the 1st time since we moved to Denver we are finally at the Children's Hospital for our 1st Neuromuscular Clinic visit.  We are cautiously optimistic that a new set of eyes can bring a new perspective to this mysterious illness....

After doing this hundreds of times......I don't mean to be rude to all the clinicians, therapists, misc medical staff.... but this isn't my 1st rodeo.....

We've been down this road so many times....... the questions all the same, our responses to the questions all the same... sounds like a broken record, and frankly I don't have the patience anymore....

I want to record my responses and push play.....but for the sake of Jack I try to remain cordial, but even he is tired of the game... look up/down, hop on 1 foot, run down the hall etc.... and 5 hours later we are at the lab for more blood tests, genetic testing and our hopes high that maybe this time... just this time... we may have our answer.....

But none of the above are why I have a knife in my heart...to us that is all routine, part of our daily existence...

The knife is in my heart because the older Jack gets the more he understands words like "disease" and "disability".....Can't the medical staff just talk in code....I hate that he has to hear those words over and over....he is older now and understands them...

Which leads me to the knife in my heart....

Yesterday at the clinic he asks "Mom, when I get married and have a son or daughter-can they get my disease?" I fight back tears ...that a 10 year old boy can have so much foresight..... and I tell him the truth which hurts so much.  "There is a chance buddy-but genetics are a funny thing-anything can happen good or bad."  After all, my husband and I do not have a disease-Jack's genetics are just a freaky make up of our screwed up genes....the Russian Roulette of the genetic pool.

So friends when you see me......

Please remember to remove the knife out of my heart-as it aches so much for this incredible, amazing little boy with so much wisdom, foresight, and compassion well beyond his 10 short years.