I love sleeping, what I mean by that is I love a good sleep but it’s not always an easy thing to get, especially not if you’re a parent or carer of a child with Rett syndrome.
As well as everything else Rett syndrome does, it also plays havoc with the sleep ritual, and even the best sleep regimes can easily be thrown out the window. I’ve spent many a day chatting to a parent across the planet who was still awake, sitting exhausted, frustrated and full of coffee or Red Bull, watching over their child.
Good sleep is vital to the human body, it helps so many things, with muscle repair, it helps with growth and healing, sleep is a critical part of the body’s maintenance cycle. When you’re having difficulty sleeping, your health is compromised, you’re tired, crabby and really low on energy. It’s not only the child losing sleep, it’s the parent too. The grind of Rett syndrome is already exhausting, throw in the fitful sleeping patterns and it makes a hard job even harder.
There’s another reason why the lack of sleep is so incredibly frustrating for parents of children with Rett syndrome, it’s quite simply because when they are sleeping, they’re at their most restful, and in many ways untouched by the harsh realities and anxieties brought on by Rett syndrome. It’s almost as if in sleep they get to be free of Rett syndrome for a short while. Many mums have commented how much they love looking at their child when they sleep, for parents of a child with Rett syndrome, it’s an even bigger blessing.
This is not always the case, the reality is that apnea, seizures and various other problems can interrupt their sleep, but for the most part it is almost respite away from the hardship of Rett syndrome. When they’re asleep, it’s as if you have a chance to worry less for a short while, it’s as if you have a chance to breathe.
I’ve been making pictures for some time now, and it’s amazing to me how much of a sanctuary sleep seems to provide for the girls. When I see these beautiful photos of the girls at peace, sleeping and free, I wonder what they might be dreaming of, I wonder if in their dreams they get to fly too. I hope with all my heart that they do. I hope that the rest that parents get at this time, is matched by a freedom for the children that only their dreams can provide.
Dream free sleeping beauty, dream free.