This is a quote from another Rett mamma, Elizabeth – it is a part of the Army Of Us Rett Syndrome Awareness Campaign. All month long they are sharing amazing facts, links, photos, and of course amazing quotes. This one sort of sucker punched me.

It is something that as a mom I think about – it is morbid, and I hate that the thoughts creep into my mind, but they do. I worry about her dying….I worry about her outliving me. I worry that our cure will not come and that yes – she will stay trapped in her body her entire life. It is overwhelming for sure and I TRY not to go there. Most days I don’t but then I read a statement like this and my heart breaks.  It is in moments like this that I stop and pray – for treatments that might help or our miracle cure.

I hope that you all have hung with me throughout this month with all of my facts and posts. I hope that you have be educated a bit and maybe even shared with others! I do want to share a few more images in hopes that you might share them too!




Leave a Reply