Marc and I are still sitting in the car, in the parking lot, watching as people dressed in black, sunglasses on, tissues in hand, with their head bowed...walk toward the door. The scene is hauntingly too familiar. I am waiting to pay my respects to a family suffering the most feared outcome of Cystic Fibrosis...a funeral. And here I sit...writing. Its what I do for me...so I can be the strong person I need to be once I walk through those doors. Ive been in their shoes. Ive been there, next to a coffin...barely breathing, semi-conscious, yet consoling others as they feel a small fraction of the searing pain I am experiencing. Since 2006, Ive been a member to a club no parent should ever belong to...the club that Lisa Schwarzman is now a part of now. Where you live the rest of your life altered... …you live the rest of your life trying to accept that your child has a second date. …you live the rest of your life stumbling over the question, “How many children do you have?” …you live the rest of your life with a tissue box by your bed because you go to sleep and wake up with tears. …you live the rest of your life not knowing how the rest of the pages would have been written. …you live the rest of your life not knowing to look up to heaven or a tombstone to talk to your child. …you live the rest of your life being able to laugh and cry at the same time. …you live the rest of your life with a hole in your heart that won’t ever heal. But you live. You live because they fought so hard to live and they cherished each breath they took. So you live…even when you don’t want to. As Jena told me, “Pain is not a valid reason for stopping.” So whenever I have the opportunity to be there...I am. To be there to let the suffering family know they are not alone in their grief, their loss, and their emptiness. And to promise them that I will never stop doing whatever I can so no other family will lose a precious life to Cystic Fibrosis but to old age...like 103 ;-) #InThisTogether Breathe easy, Robert...you will never be forgotten.
Posted on: Sat, 29 Mar 2014 15:07:50 +0000
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