Yesterday we participated in our first ALS Walk. Not just as participants, but as a family that understands how important an organization and others like the ALS Association are regarding raising money for research, offering  assistance through equipment and advocating for those they serve.  There are so many worthy causes out there I know, but this cause, the fight to end Alpha Lima Sierra, is truly one of life or death. For those that are not sure what ALS is, lets start with what it is not. It is not a disease that you can take treatment for, you cannot take a drug, it is not one that will just progress for a lifetime, it is not one with a survivability rate or one that goes into remission.  IT. IS. FATAL. For now.

Do you know how very hard it is to say that? Fatal. “My husband has a fatal disease”. “My son’s daddy has a fatal disease”. “My in-laws son has a fatal disease”. “My sister-in-law’s brother has a fatal disease”. Can you imagine saying that and it be for real? It is very real for our family and even now, as I see his handsome face smile at me or our son, I can’t really believe it’s true. That is, until I see how tired he gets from simple tasks or how the strength in his once big, strong protective hands is being lost.  This is a very scary time for us. We are all dealing with this the best we can. So, seeing all the wonderful support at the ALS Walk was truly amazing. Seeing families and friends walk for their person with ALS (PALS) was…beautiful. It made me feel not so alone. It made me feel like there are so many people that understand what it means to say my husband (father, son, brother, friend) has ALS, a terminal disease. I know how much that means, to know others truly and deeply understand the pain and fear you have. When the Big He and I lost our twin girls in 2000 and our son a year later, there was comfort in meeting others that had experienced the same. It is so true that you never want anyone to join your club, but there is much comfort knowing your walk is not alone.

Yesterday, we walked with so many people. We walked with husbands and wives, brothers and sisters, mothers and fathers and of course their loving friends. Everyone there showed me that our family is not alone. The ALS Association and their continued fund raising to help END ALS is so appreciated. We are grateful for all groups raising money to end a disease where the best the doctors can give is a recommendation to get your affairs in order as there is nothing they can give to heal.  There is something so wrong with that.

To all of our friends and family that generously gave money and/or time to support us and Tom’s Troops, I thank you from the bottom of my heart. My family thanks you. Know that the money you donated helps with research, equipment and advocacy. The  wheelchair the Big He rode in  yesterday was provided by our ALS Chapter. It allowed the Big He to participate in the walk instead of sitting and watching.

All my love,

The She.