A note to Rett grandparents: how you can support your kids

I had an email from a reader once saying that her granddaughter had been diagnosed with Rett. She asked me how she could support her daughter at this difficult time. It came back to me as I was doing the dishes this morning {that’s usually when blog post ideas hit me} and so here I am telling you grandparents what your kids need most when their daughter is diagnosed with Rett.

It can be very easy for me to think and act like Rett Syndrome happened to me. I could play the martyr and get people’s sympathy, but you know what? Rett Syndrome didn’t happen to me. It happened to Grace. No matter how hard I take this diagnosis, no matter how much it screwed up my life, my plans, my dreams…it did so even more to Grace. Immeasurably more.

So what I said to the grandmother was this: the best thing you can do for your daughter is remember that this didn’t happen to you. It happened to your granddaughter. It’s your job to support you daughter as she supports her daughter and if you need to vent about how hard it is for you, do it to someone else. Your daughter can’t support you right now.

I think what we all need to remember is that this happened to our daughters and not to us. Yes, Rett takes a toll on us and our families. But it’s nowhere near as much a toll as it’s taken on our little girls.