I wrote the following piece yesterday, thinking of all my friends who have lost their children to illness. In the wake of today’s tragedies in Connecticut and China schools, it seems extra relevant to appreciate what you have although I know it can be so very hard. The following is an update on my previous piece.
I can distinctly remember sitting at my desk, writing “Transferred To Siberia” when my seven year old twin daughters were first diagnosed with mitochondrial disease, a life-threatening metabolic disorder. I was feeling lost, alone, and depressed. Most importantly, I was without a path.
My usual way of coping with stress was to help others, so I volunteered….a lot. I started to meet other families in my situation, be it mitochondrial disease or another equally devastating illness. I found my “Facebook family,” for which I am eternally grateful. We share the triumphs, the hardships and the losses.
And it is the families who have suffered losses who taught me the greatest lesson of all. Life is about the little moments.
It is about the giggles, snuggles and experiences we enjoy. With the loss of each child, I am forced to look at my own children, knowing I am the one who understands what makes them happy in all the chaos. It is not about what makes a typical child happy. It is about seeing them as individuals and what quality of life they can enjoy.
I try to appreciate every moment I have with them. This is not always easy. They have been listless and crying almost all of this past year. There is nothing doctors can do. There is nothing I can do. You just wait it out and hope they bounce back.
I am very grateful that my children have recently bounced back. I try to appreciate them in all their beauty while they are still with us.
The past two years have been a long climb up that mountain. There is a fine line between acceptance and giving up hope. In between lies a lifetime of little moments, regardless of how long that life is.
My new path is in those little moments.