I have been banished. The girls have a secret. (Never were there two closer sisters.) I can hear giggles from R and EB. There has been an occasional dash to the kitchen cupboard for more paint and sellotape. It doesn’t take too much to work out that the covert operation being undertaken in the next room is related to the fact that tomorrow is Mother’s Day.
I was thinking about R’s relationship with her brother and sister the other morning. R was in our bed, not sleeping as usual. F came through, climbed into bed next to R and, to her obvious joy, cuddled with her. I wondered whether very many boys of his age have such a loving relationship with their sisters (to put this in context, F and EB get on pretty well most of the time but they would NEVER hug and would be horrified by the suggestion that they should).
I did worry early on about how R’s diagnosis would affect F and EB. (There is no doubt that there are negative consequences – how could they not find it stressful when their sister collapses in her car seat next to them and their mother is screaming from the front “is she breathing yet?”, while she finds a place to stop the car?) I worried about how their schoolmates would react, especially when they moved to a new school. But F and EB are very proud of their little sister and have always been very open about her disabilities. They are quick to challenge any misconceptions that anyone might have about her and are keen to tell anyone who is willing to listen about Rett. (The school in turn has been supportive, choosing Reverse Rett as their charity at Christmas).
I hope that they would have turned out to be nice kids anyway but I can’t help but think that having R as a little sister has given them a bit more empathy than they might otherwise have had. Their teachers comment on it and they comment too on how good they are with younger children. At a wedding, a couple of weeks ago, F and EB had enormous fun with all the little children. Our friend J’s little son had been F’s side-kick all day. Sentimental after a few beers, he caught me as we were leaving and said “Thank you for your children”. I am still glowing.
So today, only 3 years and 2 months after our initial referral, social work finally completed their assessment of our support needs. (I am being unfair. It took 8 months for the referral to be picked up and only the last 8 months were spent actually assessing us. What the purpose was of the many visits during the remaining time only the social worker can know.)
The Depute Head at R’s school has said on a number of occasions that he thought the lengthy delay was most likely due to the perception that we were coping. It strikes me that social work must set this threshold far higher than most reasonable people would. Weeping at meetings and sobbing on the phone are apparently the markers of a coping mother. I have no memory of behaving like this before Rett (perhaps I am of unusually robust character and most people do this all the time).
The social worker was noncommittal with regard to how long it would now take for the recommendations to be considered and the decision to be conveyed but she indicated that she had discussed our needs with her manager. She seemed (I think) to be optimistic that we would be offered a package to address both R’s needs – to access social activities – and our need to access respite. She discussed with R and me how respite would work. I explained to R that it would be a bit like Brownie camp or a sleepover. Which it is. But I feel so guilty. We need the break. The guarantee of a good night’s sleep, if only twice a month, would benefit G and I enormously. There would be a knock-on benefit for the children. I hope that we would be a bit less grumpy and we would be able to spend some time with F and EB. At 8 and 1/2, R might well have been going to her first sleepover about now (Or not. I hate sleepovers. There is never nearly enough sleeping.) She will probably have a lot of fun. Still, today’s news doesn’t feel like success. It feels a lot like an admission of failure. And I so wish that we didn’t need this as much as we do.
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.
R has a cold. It sounds so trivial. It’s part of a Scottish winter. Man up and head back out into the rain again. A cold for R is rarely trivial, though. And while this time we have avoided a trip to A&E, for the last week she has been very poorly indeed. When R has a cold her already disordered breathing becomes much worse. She and we are comfortable with her usual quirks. The irregular breathing that accompanies her cold scares her (it’s not just a blocked nose; she quite simply stops breathing). And because she is scared, she hasn’t been sleeping.
Broken nights are the norm for us. So when I say that she hasn’t been sleeping, I mean exactly that. She got up this morning at 4; yesterday it was midnight. I am so tired that I want to cry. Instead, I am short tempered and distracted. F and EB are very sympathetic: “give Mum a break; she’s tired and stressed”. This makes me want to cry too. Should children of their age really be so wise? And then I feel guilty that I should even be complaining: how much worse for my poor, scared, tired and sick little girl?
So not one for the jar then. Here’s hoping that R has a better night.