What do you say to someone whose daughter has just been diagnosed with Rett Syndrome? I am wondering because a nurse from the hospital that R attends has asked if I would mind speaking to parents who were given the diagnosis on Friday (coincidently, Reverse Rett has been asking a similar question on Facebook this week).
Those who know me in real life will appreciate that this is really not the sort of thing that I am good at. I am undiplomatic, unfortunately. I am trying hard to recall the sorts of things that helped me, as well as the things that didn’t. And I am struggling to think of things to say. The cold truth is that the thing that helped more than anything was a prescription of Prozac.
G and I were not in a rush to talk with other parents. About three months after R’s diagnosis, however, we had the opportunity to attend a Rett clinic that was being held locally. We attended for the appointment at the allotted time. There was another family waiting with us. Their daughter was older, perhaps in her early 20s although she looked younger. She was profoundly disabled by Rett. R was three, very mobile and still, at that time, with quite good use of her hands. The mother was very taken with R, who was very cute. She watched her for a little while before turning to us to say “She reminds me so much of my daughter at the same age”. An innocent remark. The sort of thing that I might say. We were devastated.
Prozac aside, what really helped was the support of my brilliant friend D. She says now that she didn’t know what to say to us when R was diagnosed. But she didn’t hide away; she showed her support in kind. She would drop by the flat with little warning and take over the children, while sending me off to bed to sleep for an hour. Or she would come over with cake and make us both coffee. She would listen. Even now, when R is in hospital, it is D that appears with (hot) dinner for me then chats with R, while I have something to eat and have a shower. R adores D. We all do.
I think the reality is that there is little that I can say right now. I can’t make Rett any better. But I can tell this family that R is a ray of sunshine in our lives, despite the challenges. And I can say that there is hope.