It was warm outside. At least that’s how I remember March 9, 2001. We were in Lila’s room; Lila, my wife Erika, a hospice nurse and me. We just gave Lila another dose of morphine to help her with discomfort. We knew it wouldn’t be long. I picked Lila up and disconnected her from the oxygen monitor. Almost three, Lila was long, heavy, and immobile. I held Lila close as we sat in the recliner next to her hospital bed. Her breathing slowed down as the medicine worked it’s way through her body. Erika stood by our side. We knew it was time. I don’t remember what I said to Lila, but I remember her last breath. I remember sitting with her, holding her, until the hearse came. I remember carrying Lila outside and placing her body, my daughter’s body, into the hearse. A few months later, it was even warmer outside. We were in Florida for a Tay-Sachs family conference. We never attended the conference when Lila was alive because we didn’t want to risk her fragile health on travel. We were surrounded by families who could relate almost perfectly, like so few can, to the last 2 ½ years of our lives. I attended a session just for fathers and I knew I would never attend another conference, because I was not a better man. The fathers were wonderful men, but when they spoke I knew I was alone. Each man, each and every man, told a similar story. They said, “I am a better man. My child taught me to be a better man. My child taught others to be better people. My child was an angel on Earth“ They each went into detail about how they were better men. How their angels brought out the best in people, the best in them. Invariably God’s plan weaved into their narratives. To a man, and in later sessions their spouses echoed similar sentiments, each believed in God, believed that his child was part of God’s plan, and that they were better men for the experience. I envied them; their faith. I was alone. As each person spoke I thought, “I’m not a better man. I’m tired, angry, depressed, less engaged in life. I’m just less.” And louder still reverberating in my head, “And even if I were a better man, the gains weren’t worth Lila’s suffering. No benefit is worth her short life full of so much pain and suffering. Lila wasn’t an angel. Lila was my very human very fragile daughter.” I found my wife after the session and compared notes. We felt the exact same way. Wonderful, caring people surrounded us, but we couldn’t relate. On April 2nd Lila should be turning 16. If Lila were still here, I would be a better man. I would be a better man because Lila could have hugged me as she grew. She never hugged me, not once. She could have said, “Dad, can I drive the car?” She never spoke, not one word. She could have smiled that smile I remembered before the symptoms prevented voluntary facial movements. I would be a better man because I would have seen Lila play with her older brother Gray and meet her younger brother Gavin. I would be a better man because I would stare down (or up, I’m kind of short) menacingly at her dates. I would be a better man because I would see Lila graduate from high school/college. I would be a better man because I would walk her down the aisle. I would hold Lila’s children and maybe then I could believe that some God had a grand plan. It’s been almost 13 years since her death and I’m not a better man. I don’t want you to be a better man (or woman), if the price is your child’s (grandchild’s?) suffering. So I ask, “What’s in your genes?” Today’s technology allows people to determine if they are carriers of deadly and/or debilitating diseases. Get tested, tell your grown children to get tested because having healthy children is a great way to become a better man.
I'm sending alot of hugs your way! It takes alot to admit what you did, and I'm sure you aren't a bad person for not "being a better man". No one says you have to because you loose a child. I know many a person who would absolutely become a person you wouldn't want to know if they lost their child. I don't know you from Adam, but I can tell you that you have to be a good person in order to come here, share your story, and ask others to get tested.
I do not personally know whats in my genes. Neither does my husband (his father was adopted, and I simply know a name for my father, never met him), and I worry everyday what could possibly affect my little girl one day.
Thank you for sharing this with us.
♥ Brie ♥ My NFP Chart **Kasey.. 01/07/2003-12/24/2012. You were my heart, my soul, and my whole world, cancer may have taken you from me, but you'll never be forgotten. I have your pawprints forever on my heart.**