City of Angels...

"to touch you, and to feel you, to be able to hold your hand right now. Do you know what that means to me? Do you know how much I love you?" ~Seth (The City of Angels)

I live in a world filled with angels...beautiful children who have gained their angel wings after a lifetime of fighting a disease that often shows no mercy. Yesterday morning, our community lost another child, a sweet girl whose smile beamed light into the universe. She was smart, beautiful and kind. She was the light of the lives of so many...those who knew her and even those who didn't  know her personally saw her light.

The City of Angels is filled with so many beautiful souls. Over one hundred children have entered this city over the last thirteen years since Javad was diagnosed with Myotubular Myopathy. One hundred children...whenever I write this I am overwhelmed by the sheer number. Their bodies weak although thwir minds are strong. Beautiful children bound by bodies that don't work for them.

My world is small, tiny hearts, tiny hands, each affected by this disease...families impacted in ways that they can't even imagine. Families that struggle, threads of hope binding them together, these threads thin and breakable. The pressure of this life stretches those bonds, threatening to break them, sometimes stretching them so thin that they can barely hold. There seems to be no rhyme nor reason as to which stay cemented together and which are shattered apart. The community draws together, building supports for each other, holding one another up, when they can't hold themselves up.

I have always imagined that within these walls is a beautiful playground where these children, often bound by Earthly bodies that they cannot control, now find freedom and joy. Each one greeting the next with open arms, showing them this beautiful land where they can now run and play. It's a beautiful thought that soothes our minds while our hearts are still left with the gaping hole from our loss.

The City of Angels, filled with souls that have departed from our lives but not our hearts, is a real and beautiful place that is also filled with the sorrows we bear from the loss. Imagining their beautiful faces running free soothes the rough edges of our hearts, but does not fill the hole left by the loss. It is only hope for a future where children do not depart that brings us peace.