Life with Rett Syndrome: I am still searching and I won’t stop

Beth Johnsson

hannah johnsson 225x300 Life with Rett Syndrome: I am still searching and I wont stopBeth Johnsson is a mother of three and a secondary school English teacher. Her daughter Hannah was diagnosed with Rett Syndrome just before her third birthday. In this blog she shares her experiences of caring for a child with the condition.

I rarely remember my dreams. I suspect this is because they are rarely unusual or noteworthy enough to hold on to, too often revolving around the pile of marking or the imminent Ofsted inspection to warrant using precious memory space!

Nor do I often subscribe to dream analysis: I spend enough time over-analysing the things I do, say and think when I am awake, without needing to take my sleeping hours to the psychiatrist’s couch too! But occasionally the images stay with me, remain vivid, and make analysis unavoidable. This dream will sound like something I made up for metaphorical effect, but it’s not. This really is the dream I had two weeks ago, the night before my little girl turned six.

I was in a children’s library with a friend, both with our daughters who were around one to two years old, toddling around and babbling earnestly to each other. The line between dream and reality was fragile: my dream friend and her daughter had the same names and looked exactly as they do in reality, my little girl’s curly brown bunches and dimpled grin were unmistakable.

They were cumbersome but curious, exploring the world in the infectious way that toddlers do, enchanting us with their serious adventures. And then she was gone. I had not looked away for a second, she had not hidden mischievously, no one had tempted her away, she had just gone. We looked around, fairly casually at first, confused that she could have just vanished like that, but more frantically and anxiously as the seconds fell away. It is astonishing how sickening the pit in your stomach can be even when you are asleep.

Gradually other mothers joined our search, all reassuring me and confident that she couldn’t have gone far, that she would come back to me safely. I separated from the group, looking further afield, becoming increasingly desperate and disoriented as I lost track of where I had looked and where she might still be. I felt that she was constantly right there and yet not, always slightly out of my grasp, around the next corner but gone when I got there. With conviction, I realised that she must be where I had left her, that if I could just get back to the last place I had seen her, she would still be there, giggling.

compass 300x225 Life with Rett Syndrome: I am still searching and I wont stop

(Getty Images)

I headed back, and on my way passed a park. Sitting on the grass, in the sunshine, I could see my friend with her daughter, and all the mothers and children whom I had left to search for my little girl. Everyone was there, except Hannah. They were having a picnic. Tartan rugs and wicker hampers, triangular sandwiches and sponge cake, yet not a crumb of concern. I shouted over to them (there was no visible fence or barrier, but somehow I still couldn’t get to where they were) and asked if they had found her; they hadn’t. I shouted again, asked if they knew where she was, why they had stopped looking; they didn’t reply. It wasn’t that they were being evasive, or lazy, or uncaring, they just didn’t have an answer. Or perhaps they simply couldn’t hear me. I kept shouting, desperately puzzled by their inaction, frustrated by their oblivious enjoyment. Why had they stopped looking? And then I realised why, and in that second the pit in my stomach became so violently real that I woke up: they had stopped looking because they knew she was gone: they had given up.

It doesn’t take a psychologist to figure this one out. It would be patronising to explain it. But I will say this: don’t assume this is a dream only of despair and grief. It begins with loss and sorrow, but it ends with determination and hope. When Hannah was first diagnosed, several people told me that there are three stages of grief: denial, anger and acceptance.

Denial and anger? Yes, often, unavoidable. Acceptance? No, never. Why should I accept something which limits my little girl’s life in every respect? Why should I accept something from which I know, because I can see it in her eyes, Hannah longs to escape? Why should anyone accept something which can be changed? I can’t. I don’t. We shouldn’t. The little girl I searched for is misplaced, not lost, she is trapped, not vanished, she is looking for me just as determinedly as I am looking for her. Instead of acceptance there is hope; for every 12,000 parents having a picnic, there is one determined to keep looking and, hopefully, another handful of their friends and family prepared to join the search party.

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  • TerriS

    Have just read the link site – thank you for making me aware of this devastating condition. I will certainly bear it in mind when donating to charities. I wish you a hopeful future and will keep you and your family in my prayers.

  • Caroline Dempster-Fitzpatrick

    OMG, you have hit it for me Beth. I am here . I too feel I cannot and dont want to accept this . There is a way out and a way. I, we just have to find it, just have to get it. Keep writing…

  • Tim Baty

    Beth – just found your blog. Our daughter also has Rett Syndrome, and I recognise and sympathise with so many of the things you write about. Thanks for articulating our experiences and emotions so well – let’s all hope that the tantalising hints of a cure come to fruition soon. Keep writing!

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