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Living with Rett Syndrome: One of those nights

Beth Johnsson

hannah 300x225 Living with Rett Syndrome: One of those nightsIt is 12.04am and Hannah is awake. She has been awake for just over an hour and it is going to be another long night. Four years of experience show that there is little remedy for this ‘manic’ waking, more than lying down beside her (a spare mattress is in permanent residence), feign sleep whilst maintaining a self-defense position, press ‘play’ every 25 minutes on her DVD player and wait until she too runs out of energy. It can take an hour, it can take five. Two episodes or 10. Either way, I can guarantee it will be stressful.

Mainly, it’s her breathing. Hannah breathes heavily and quickly even in her calmest mood, but in this manic state her breaths are laborious, rapid and intense. I was told once that our pulse rate alters to match the pulse or beat around us.

Of course, scary movies use music which creates precisely that effect. Hannah’s breathing can be equally frightening! Lying next to her, my own pulse is quickening, my heart is thumping louder and faster, the possibility of sleep is diminishing. She is actually causing physiological reactions which make me stressed. Sorry, not she, it. Rett Syndrome is causing this, all of this. And I hate it.

Two minutes later her breathing stops, mine too. I sacrifice the feigned sleep in order to check she is still exhaling, and bam, my maternal anxiety has taken us back to square one. I never learn. I’m pretty sure the strangled snorting noise and the breath holding are not deliberate efforts to rouse me, but as the stressful seconds slide by, rational thinking slips a little too. Three pregnancies with blood pressure low enough to make midwives double-take; it’s definitely not low right now. And we’re only 37 minutes in.

The self-defence position is becoming hard to maintain already. Hannah has shuffled progressively further out of her bed to establish grabbing distance to my hair. I sense the incoming lunge and flinch – a futile defence move. Funny how this child, who lacks the fine motor skills to grasp an apple, has no trouble whatsoever aiming with startling precision for lumps of my hair!

I shelter beneath the duvet but it is quickly too warm and I have to choose between attack or suffocation. Attack. But of course I am typing, so now she can see the phone and is lunging for the alluring glow of technology as well. It must look comical, this late night show. She deletes a word here and there, but derives less amusement from this than from liberating a few more of my grey (did I mention I hate Rett?) hairs. If I was feeling mildly less hassled, perhaps I would feel grateful to have the grey removed. But right now, gratitude is not high on my agenda.

There is shouting too. It is loud, aggressive and pitch-perfected to drive right through my head. One shout generally leads to many more, so I have to stanch the flow if I want to contain the damage to only one adult and one child awake. The problem, though, is that nothing stops the shouting: a ’sssh’ is greeted by laughter and more shouting, ignoring is greeted by louder shouts and more determined lunging. Twice, she shouts ‘Mummy’, which receives a tired smile. Sometimes a good shout back gets a giggle and a temporary stand- off, but it’s not exactly compatible with the ‘don’t wake the others’ campaign. Tonight my tactic of choice is to ignore, but in truth there is nothing about this which is possible to ignore.

It is 1.33am and Hannah is still awake. I am more tired, frustrated and follically challenged than I was two-and-a-half hours ago. Knowing that the last ‘manic waking’ phase went on every night for 28 nights doesn’t help. Knowing that she will wake at 6am regardless of how long she stays awake now doesn’t help either. I am typing in real time and to write ’sigh’ seems inadequate, but that’s all there is. A long, weary, helpless ’sigh’.

It is 3.17am and Hannah is flagging. Based on slightly shallower breathing and longer gaps between lunges, I estimate an ETA of around 3.28am. I have not lasted as long as her, since the last entry I have been slipping in and out of sleep, waking intermittently to press ‘play’, check she’s breathing, or loosen her grip. I know that the next time I wake, I will see her flaked out, strewn across her bed, breathing as calmly as she ever does. I know that I will be glad to be next to her and to be able to watch her sleeping peacefully, despite the blood pressure, the scalp and the lumpy mattress.

It is 6.03am and Hannah is awake and shouting. It’s a brand new day.

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  • Karen Cundy

    Sleep deprivation is no fun under normal circumstances, an illness, a small baby, a child’s nightmare. Another challenge Rett syndrome throws in the mix particularly when the day ahead is sure to be a challenge itself. But all the more admirable when parents faced with such killing sleep disruption due to Rett or any other condition don’t just get through the next day but make it the best day it can be for their children.


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