A thousand angel wings...

Have you ever seen a thousand paper cranes? Imagine what a thousand angel wings would look like, fluttering through the breeze, glittering in the sun. I am not a religious person and I'm not entirely sure what I feel about God, but I am confident that there is a higher power and I believe there is a heaven. My heaven may not be the one filled with  golden streets, but rather a playground filled with the over one hundred children and young people that have passed away in the last ten years since my cutest boy was diagnosed with Myotubular Myopathy.

I think having my littlest have this disease is actually what made me question...trying to align the ultimate love and a higher power into my place of being. I have faith, I believe, I just don't name it. Thinking of all the children and families that are affected by MTM, I like to think of a beautiful park where they are all reunited, each child welcomed by others, taught how to use their new and freely moving bodies. Their strong lungs breathing deeply and laughter filling the air.

My Grandfather is there, sitting on a bench, smiling and holding the littlest of ones, learning how their glittering wings work, with their running legs, and sprinting feet. Rolling and wrestling on the warm and soft grass is happening and laughter is filling the air. Today, word of a father lost due to deep despair and loss of hope, saddens my heart, but I imagine him there too, watching the boys in their free bodies and watching over his son from above, his own son's guardian angel.

So many children, so many lives impacted by the loss of each of these angels, big and small. Sweet cherub faces, never changing, never growing older, waiting until they are reunited with their parents, siblings, family. Each child and young adult finding their role in this society of angel wings...each caring for the others, each finding their new life. Each of these angels watch over those they love, whispering in their ears, sending their giggles through the wind, brushing their soft hands across the cheeks of those they love.

Sometimes, as I am kissing my cutest boy, I think I hear the bell-like sounds of their laughter as they run through the playground, playing tag, swinging, holding hands. Sometimes when I close my eyes, I can almost see them in the sunlight with their angel wings glittering like diamonds on the dew.

The sadness of losing even one precious angel to this disease breaks my heart into a million pieces, which makes the sorrow of losing over a hundred sweet souls, break my heart into a hundred million pieces but the knowledge that they are all together, playing, watching over, fully breathing the sweet air of heaven, makes the shards of my heart a little rounder, not quite as painful, and the tears that I shed glitter a bit like the beautiful angel wings that I imagine they have.


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