Angel Wings Flutter...

The last two and one half weeks have been a lesson in highs and lows, triumph and tragedy. We traveled through ten states, over 6000 miles, the cutest boy in tow. Each day a victory over this disease known as Myotubular Myopathy. For a boy who was born "weak with a low survival hope," he has flourished regardless of the difficulties in put in his path.

He is an amazing traveller. He smiled through the entire trip relaxed in his twin bed nestled in our van, ipad in hand.

During this trip, we had an opportunity to go to the 2013 MTM-CNM Family conference where we met other families and learned from researchers about the medical advancements that are in our son's not so distant future. Each child that was in attendance is a miracle in their own right.

There are approximately 500 children and adults in the world affected by Centronuclear-Myotubular Myopathy...each one a gift. These warriors fight each day, each hour, each minute.

The hardest part of this journey is when our community experiences a loss. The high of the conference was almost dashed by the loss of one of our warriors. Another sweet boy gaining his angel wings far too soon.

I am angry...angry that another child has been lost, angry that a family is grieving, angry that this loss puts death into the forefront again.

None of us know when our time may come, but the constant reminder that this could be an element of our life is exhausting...

I consider myself a strong woman. The parents of each of these warriors are made from a fabric that  is far beyond what many can imagine. Each day bringing the unexpected.

Having one of these sweet warriors enriches our lives in ways that others, who don't live this life, will ever know...

but waiting until a new set of angel wings flutter..sucks...