This Mommy Runs on Caffeine

This Mommy Runs on Caffeine

June 11, 2009

A Prayer for a Friend

I received an e-mail early yesterday morning from my friend Amber - she is also preggers like me and expecting a daughter in mid-August- that broke my heart. Her 18-month-old nephew fell ill very suddenly over the weekend; unfortunately the diagnosis was not good- meningitis. Unfortunately baby Ryder passed away in his mother's arms just hours after Amber sent out the e-mail. I feel so horrible for the family; I can't imagine what they are going through. How can you make sense out of losing such a helpless little guy, and how do you ever recover from that? I'm sure you never do, you just pick up the pieces and try to move on with your life. I didn't know Ryder, but my heart still aches for my friend and having to deal with the loss of their little angel.

I think as I am beginning to start a new chapter in my life as a Mommy, things like this affect me differently. It was hard enough coping with loss during each miscarriage prior to BabyW even though they were very early- if something were to happen to BabyW right now, I would never recover. Even though she sometimes makes my eyes water when she gives me a swift little kick, I love her fiestiness (she's definately going to have red hair!) and predictability. (I can almost set my watch to her little activity in there!) Life would never be the same....

But you do survive. A family friend lost his young son, just four-years-old, to a really rare genetic disease. Again, another senseless tragedy. So unexplainable- especially when you try to do it in medical terms. Little Gregory had Gaucher disease; and at the time of his diagnosis not much was known about it. Basically, in this disease- nearly always fatal- a child lacks an enzyme necessary for their body to eliminate dead cells and stores them in other areas of the body resulting in organ failure. There is no cure. It has been 12 years since Greg and Deborah have lost their son. It has been 11 years that the legacy of Gregory lives on in their charity- the Children's Gaucher Research Fund. They focused their grief into a goal- to help other families that have been affected by this rare disease. And it has helped.... the research is making great strides much in part to the grants that the CGRF provides to the scientific community to study and research lysosomal storage diseases (think along the lines of TaySachs or Parkinsons). I don't know how much it has helped Greg and Deborah cope and survive, but their strength and pursuit of a cure is amazing to me. It's an honor for me to take part in finding a cure: our annual corporate golf tournament (which is taking place next Thursday!!) is in it's 8th year and we donate all net proceeds to the CGRF; and Jason and I also volunteer our time and services in planning and running their biennial medical conferences. It's the least we could do- everyone wants a cause to belong to and I'm sure these efforts will take on a different meaning for us as we become parents.

I hope upon hope that we won't ever have to survive losing our child, but if we do, I know that the love, compassion and strength of friends and family as well as perfect strangers will help us endure. I hope that each day will become easier for Amber's family....

Here's to angels watching over us in Gregory. And now, Ryder.

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