Life with Rett Syndrome: There’s no such thing as ‘just a cold’

Beth Johnsson
rett syndrome getty creativ 300x225 Life with Rett Syndrome: Theres no such thing as just a cold

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Beth 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.

The name of your child’s school on the screen of your vibrating phone makes any parent nervous. It’s hard not to imagine the worst, even if only for a nano second. Mostly, mercifully, these calls begin with a reassurance that all is well, followed by some routine admin matter which does not, after all, require an ambulance.

I was called twice this week. Emergency services were not needed but the admin enquiry and the relief it would have brought were also lacking. My phone rings because Hannah has ‘just’ a cold; not the standard snotty nose and heavy breathing which are now permanent fixtures, but a watery eyes, phlegmy cough, nose needing to be wiped so often it’s bleeding, kind of a cold. Children get colds of course and sometimes it’s easy to forget that just because Hannah has Rett Syndrome, it doesn’t mean she can’t get everything other kids get too. I often think there should be some bargaining system in place here: if you get a debilitating condition you are spared the ear infections and stomach bugs. But it doesn’t work like this and in fact she is knocked harder by the routine ailments than most kids. Yes children get colds but it’s not the same.

When a newborn cries, there are generally four options: feed them, burp them, change them or let them sleep. By the time a wider range of needs has developed, so too has communication: a parent can help. Hannah’s communication developed at a rate inversely proportional to her needs: her speech stopped, her hand function deteriorated, her needs grew. As with a newborn, we learned to identify the imperceptible differences between her cries, but her range of needs now far exceeds the basics.

She may be suffering pain I have never even considered or experienced but I am helpless. She may want something she has never wanted before but I am clueless. She may be afraid of the things she cannot understand but I am no comfort. She can shout, cry and say an imploring ‘mummy’, she can ask me with her exquisitely expressive brown eyes to do something, but if it’s none of the items on the newborn checklist I am stumped. I fail and then she gives me the shout I do understand: it says ‘why don’t you understand me Mummy?’ and it’s heartbreaking.

Of course sometimes it’s possible to get it right: to pass her the drink she is staring at intently, to change the music to one of her seven permitted tracks, to put potato on her fork rather than fish; and sometimes I know exactly what she wants but choose not to give it to her (the biscuit tin generally).

But go beyond the here and now, the ‘I want’ or the ‘I don’t want’, and the message she intends for me becomes blurred and maddeningly elusive. When speech is lost, when hand function is too limited even to point to the part of the body that hurts, when understanding of her photo choices does not extend from object to abstract, what then? What if it’s not only a cold? What if something really hurts? What if she knows something I don’t and not knowing might mean I don’t act when I should? What if she could just talk? Recently, the Rett Syndrome Research Trust posed a question: if you could change one symptom of Rett, what would it be? The overwhelming majority said ’speech’. Hannah’s voice, apart from being the most beautiful thing I can imagine ever hearing again, would mean answers to the ‘what if’s.

Twice this week I have had the call: the first time, I go directly to school and bring her home, where I spend the rest of the day watching, worrying and trying to work out what the tears and screaming and fingernails digging into my skin mean. I conclude she has a cold and is tired. Beyond that, I am just guessing and inevitably over analysing. The second time, I assure them that the shaking and unsteadiness is ‘normal’ for a cold-ridden Hannah.

But what if it is not just a cold? Even if it is, I know where that can lead, and have no wish to tread that path again. Twice in the past, a bad cold has led to a period of immobility and regression which has lasted three to four months: an unwillingness to get off the sofa let alone walk between rooms, a reluctance to engage with anything and worst of all a withdrawal into herself and away from our world. The loss I fear most.

Both times so far, we have been lucky, she has come back to us, and after weeks of being disturbingly undisturbed whilst I make dinner, I have found her loitering at my side in the kitchen, grabbing at all she can reach, and have realised with relief that she has moved from the sofa and crossed the threshold all on her own. But what if it doesn’t work like that this time? What if this phone call home ends with my little girl sitting on the sofa in a world of her own from which I never get her back?

For the last two weeks my husband and I have been noticing longer periods of vacancy and more involuntary facial and arm movements. We exchange anxious glances but neither dares to say it out loud but we both know that the dark thoughts we usually suppress to the very backs of our minds have edged slightly forward. Perhaps a couple of good nights’ sleep will set her straight and this time next week she will be driving me happily crazy as she follows me between rooms and pursues her littlest brother like a moving target. Perhaps. But there is no such thing as ‘just a cold’.

For someone like me, a person who verges on obsessive compulsive, to whom uncertainty and lack of control come close to the top of the hate list this is a scary place to live. A place where it is not possible to feel relieved that things are okay today or to celebrate that your daughter has escaped epilepsy or scoliosis, or any number of other debilitating symptoms, because tomorrow could drop any of them on your doorstep and deconstruct your world all over again.

Since tomorrow is so uncertain we have learned to be thankful for what we have today and to take nothing for granted but at the same time it is impossible to truly celebrate something you have when you know it won’t be around for long. When you have had something perfect stolen away from you once before it is hard to believe that you will be allowed to hold on to anything good again. Of course, I know that no parent ever knows what tomorrow holds for their child and that every parent lives in a degree of fear of losing that which is most precious to them. But it’s not the same.

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  • Thor Halland

    You didn’t think of actually telling us what Rhett syndrome is? Are we just supposed to know? Poor Journalism. Even poor sub editing that didn’t pick this up. The second paragraph should have been an explanatory one

  • Rebecca Zephyr

    You didn’t think that maybe shes not a journalist, and just a normal person wanting to share her experiences? Or that many people know what Rett Syndrone is, but those that don’t are probably capable of using google?

  • Lecso

    There’s a link at the bottom of the article, but the article did seem a bit incomplete without at least a brief outline of the disease. I’d never heard of it until now.

  • Nik Child

    Your article resonated so deeply with us. It was uncanny reading all our thoughts and fears as if you’d read our minds and listened to our conversations. We have twin girls aged 5. The eldest Ella has Rett Syndrome. I recently watched some early footage pre Retts of Ella talking, the most magical sound in the world to us now. It has taken a long time for me to be able to do this. I watched it over and over until I cried. That night I sat with Ella at bedtime as she cried almost hysterically. I sang to her, massaged her, held her, all the time remembering her voice and thinking if only you could tell me why you are so unhappy. Our darling child, unable to express her worst fears, her pain and her anxiety and all we can do is guess. You’re right, nothing is ever the same, everything is always more.

  • Will
  • Beth Johnsson

    Nik Child, thank you. This is why I am writing. My best wishes to you, Ella and your family.

  • Karen Cundy

    There are so many conditions to hear about, Rett Syndrome is one which we have come to know and curse, but this blog strikes at the heart of the matter to the things that really matter, to look into a window that everyone can understand – how your child’s condition affects different aspects of your life and hopes and fears. That is Beth Johnsson’s gift, writing beautifully in a unique way, looking forward to the next one.

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