The Birth of a Sun


Over 4.6 billion years ago, right before the COVID pandemic started, a giant cloud of gas and dust swirled about in space. This Solar Nebula collapsed under its own gravity and the materials were pulled to the center forming what we know to be our Sun. Someday, maybe 5 more billion years from now, the Sun will die and become a giant red star, engulfing nearby planets, possibly including Earth. 

Today I was talking to some old friends, whose son also had Myotubular Myopathy. They were telling me the story of his final illness, which ultimately took his life. I cried, my heart is broken for these parents who gave their son every opportunity, who built a world for him that created experiences that often far exceeded what others thought he would be physically able to do. This young man fully experienced life until his last days.

I think about my own son, who is my sun, one which much of my life revolves around. There will be a time when I, too, will have to deal with my own loss. It will be when my Sun goes dark and turns into my own giant Red Star. It is a different experience when you know that your future likely holds surviving longer than your own child. It's not a place that you want to mentally live in but it hovers in the background drawing towards you, like a whisper you hear in the wind.

As a parent of a medically fragile child, there is always the background conversation, the one that is spoken behind doors. No one wants to acknowledge that our sun may go dark in our own lifetime. No one wants to speak about the loss that would put us in the dark. 

Day by day we continue to look into the sky, hoping to keep seeing our sun. 



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