The Struggle

Today I am engaged not only in a struggle with the most vicious of diseases, but also with the US Army for my son. So let me tell you the story: First, we have three sons proudly serving in the military; we supported their decisions to join, attended graduations and homecomings, and sincerely believe that serving has benefited our boys. Sean has already served two tours in Baghdad Iraq, Kyle is currently serving in Kandahar Afghanistan and just last week Nolan received news that he will deploy next January; our sons have not shied away from the duties they committed themselves to. When I was diagnosed with ALS, the reality of the two - five year life expectancy deeply effected everyone in this amazing family I've been blessed with. We spent Christmas Eve discussing advanced medical directives, end of life care, PEG tubes, tracheotomy and ventilators > good old family fun. Sean is currently stationed in Hawaii with his unit set to deploy in March for at least a year. Knowing the future for me is uncertain, in November he applied for a compassionate relocation to Fort Polk, LA where he could be just a couple of hours away and able to come home on weekends to visit and help relieve Gina of some of the care taking duties. Again, Sean is not looking to get out of the Army, just close enough to support the family who has supported him. The Army, specifically Capt Adam McCombs, first played the delay game, and did not even give Sean a reply until after January 1st. At the time he was told that his request was denied because he 'has other siblings who could help.' Sean has tried to get the decision revisited and maintained his professionalism while this matter weighs heavily on him; he recently completed a two week training to prepare for the impending deployment. We have contacted our Senators Landrieu and Vitter, and I have appealed directly to Capt McCombs but so far to no avail. We are now seeking media attention to plead our case in the court of public opinion because we know the one thing the Army does not want is bad publicity. If you can help, or know someone who can, please contact me! While this is our specific struggle today, I believe it is just a small part of the much bigger problem which is the lack of awareness of ALS. You see, I don't believe that Capt McCombs is a cold heartless bastard, I think that he has no clue what ALS is, what it does to a body and how devastating it is to a family. For only a truly evil man could have a full understanding of this disease and fail to find compassion for one of his men. To my friends out there in the ALS community who are working tirelessly and endlessly to bring awareness to the disease and the situations that face PALS everyday, I say thank you from the bottom of my heart. Your Walks, skydives, golf outings, soccer tournaments, concerts, dinners and dances, even tattoos are making a difference, we just have a long way to go. To my friends and family who get tired of emails and facebook messages about ALS awareness and fund raising events, I know, but this is just too important not to exhaust every avenue, please help every time you can with donations big or small and spreading the word. Just look at the progress made in the AIDS fight in the past 15 years, it's been 70 years since Lou Gehrig died and we've made almost no strides in treatments or cures. If you can help our family with this current situation great, but everyone can spread awareness of ALS everyday, won't you join in helping all the PALS out there in the fight for their lives?