My three children were born with a genetic disease called Dyskeratosis Congenita. It is a rare maternally inherited disease of the telomeres, causing numerous problems. In simple terms, it's an aging disease that can affect any organ or function in the body. In addition to DC, we struggle on the daily with a secondary disease called Common Variable Immune Deficiency. Don't be misled by the word 'Common'. There is nothing common about the disease or the life we live.
While all of these diseases have been a big deal, and no doubt have changed the course of our life, the bigger story is in the way we have grown up in our grief. Too often, we use the people around us as the measuring stick for our own grief. We limit what we allow ourselves to claim in the arena of grief and sorrow because, let's face it, no one has died yet. Isn't grieving reserved for those who have intimately courted death; those who have watched a loved one, even a child slip from their heart that was holding on for dear life? Isn't trauma or PTSD for the brave souls who fought for the rights of others, fell prey to the abuse of bullies? Surely it would be unfair to claim trauma because of a disease!
So, we have lived small; isolated, fearing we take what isn't ours in the world of suffering. Living with a chronic, rare, disease is mess of incongruousness. If it was Cancer or MS or any number of diseases we hear about on any given day, it would make sense to me, to you, to my kids, the doctors we rely on, science...even research and funding. That isn't the story we have been privileged to know. Ours is a different story.
This is a story of how we found our way...how we are finding our way and navigating a world that so few understand. This is a map for you. A silver lining of hope, marked on a trail that we have been mapping for 27 years. We don't have the answers but we are figuring it out, one step at a time. I hope you find solace and understanding here. I hope you leave better than when you found me.