Close is Too Late for Too Many

pain-1366480As we approach the start of the Trofinetide trial, I know that it is going to go by in a blink.  And, there are other trials in different stages of development, each holding some parent’s hope for their child- improvement in seizures, breathing, or a straight up cure. I’m grateful for that hope, for myself and others; but, nearly each week brings reminders of just how long that seems and how it is now too late for sweet children we have seen grow and overcome so much, except the final hurdle.

So many faces dance before me of the girls and boys our community  has lost since Facebook joined us as one big family. So many smiles and giggles, tears and struggles, conquests and achievements, and so many, many birthdays- both had and never will now.

It can make a soul so tired. Our hearts ache for their families, ache for ourselves and for the world that has been left bereft and doesn’t even know it. We commit to not forgetting each and every one. We also hold our own tighter, promise to love them forever as tears fall upon their confused faces; we watch them sleep and place our hands on their chests just to reassure ourselves that it is going up and down.

To be in the Rett community is not for the faint of heart. You will come to love so many, many children; you will celebrate their victories, their birthdays, their lives and too often mourn them. You will discover that your heart will often be bruised and recover only to be broken over and over. You will climb the pinnacle of wonder at the simplest miracle and know the depths of great despair.  And I just have one question…

Does Heaven Have Enough Angels Yet?

 

 

This entry was posted in Acadia, Anavex, Avexis, boys with Rett syndrome, cure, Death in Rett syndrome, grief, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, tracy chapman, Trail to a Texas Trial, Trofinetide Phase III. Bookmark the permalink.

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