It seems weird to write a post about there being no words, but more often than not I find that there just aren't adequate words to express my sorrows and empathy to members of our Rett community. Nothing I can think of feels right.
One of the things I have grown accustomed to since joining the ranks of thousands of special needs families is loss. The loss of dreams and hopes for our children's future (and ours). The loss of friends and family. The loss of our own identities. And worst of all…the loss of our children.
I say ours because any loss within our community touches our hearts. Shakes us up. Reminds us how quickly the tides can change against our girls. We weep. We mourn. We console the best we can from long distances. We hold onto our children just a little tighter the day we read those six words, "Another Rett Angel gained her wings." It is a harsh reminder of how cruel Rett can be and why we desperately need a cure.
I am also at a loss for words. I don't know what to say. I feel compelled to acknowledge the loss, but what words do I use?
"You're in my prayers."
"Thinking of you and your family."
"<hugs>" (virtual hugs)
These are the only words that remotely feel acceptable. I can't fathom saying anything like, "She's in a better place now." That would just piss me off if someone said that to me. I sit at my computer, staring at the screen, trying to come up with something to say and everything just feels empty. What I want to do is embrace them. Support them. Just be there in the silence. But we are miles apart and my only option is to write this post or comment on Facebook.
Sometimes there are just no words.