Tuesday 12 December 2017

A special friendship

As Caoimhe McCooey, who has Down syndrome, begins school, her mother, Kathy Evans, wonders how Caoimhe will manage without her usual one-on-one attention

Caoimhe McCooey pictured with her dog, Dr Lucy.
Caoimhe McCooey pictured with her dog, Dr Lucy.

Anxiety started its slow trickle about six months ago. I would look at her playing and feel my heart begin to race just at the thought. What held it in check were the boom gates of time -- the first day of school was ages away.

But it's not now. All too soon we are standing on the threshold of a transition that marks both an arrival and a departure. Next week, my youngest daughter, Caoimhe, will step into a new life, one which is more or less independent of me. For the first time, she will be spending the majority of her days in the care of another. After the intensity of one-on-one, she will be just one of 24 looked after by a faceless person I don't even know. The thought actually makes me feel quite sick.

Caoimhe has Down syndrome. She is following in the size 10 footprints of her two elder sisters and starting in the prep class of a Steiner stream at a State school. I remember their first day only too well: the long walk across the playground; the tight grip; the uncertainty that buzzed in our ears and roared to a crescendo as the doorway to the classroom loomed. The feelings this time are so much more amplified. On those previous occasions I was quietly confident they would be OK, that they had the necessary skills to survive and flourish in a classroom, that they would find their voice.

With Caoimhe it is more complex. Her voice, while at times insufferably loud in our own house, is silenced by the unfamiliar. While her sisters can negotiate and make sense of change, for Caoimhe, anything different from the comfort of her routine is a trigger for mass anxiety and the rituals that go with it: hair-twirling, teeth-grinding and the beginnings of a stammer. Unable to express herself with language or noise, Caoimhe quietly implodes, like a collapsed umbrella. Over the years I have learned to read the signs -- a sudden eerie silence means she has gone off to a corner and can be found shaking with silent sobs.

In these instances, as well as human comfort, part of the remedy lies in Dr Lucy -- a brown and white Cavalier King Charles spaniel, whose spongy ears have soaked up more tears than several boxes of Kleenex. Dr Lucy's patience is legendary -- she makes Nana, the Darlings' dog-cum-nursemaid in Peter Pan, look like a Bad Mother. Dr Lucy is Caoimhe's confidante and best friend; it is not unusual for her to pad past the kitchen at any point in the day clad in the cape of some superhero. Or she may be wheeled past in a pram. The other day I came home to find Caoimhe's hair being brushed by Dr Lucy -- her paw sandwiched between Caoimhe's hands, her dark eyes pools of liquid patience.

How will she manage a whole day without that dog? Children will not be as obliging as Lucy, they will have their own opinions about what games to play. While Caoimhe has an excellent vocabulary, I am aware that I have adjusted myself to her speech patterns. I translate for her without thinking when someone is looking quizzical. Lucy, of course, always seems to understand: a communication that goes beyond words. But who will show that kind of patience and understanding at school?

Caoimhe is scared of other children. She's scared of their unpredictability, their boisterousness, their lack of censorship. Given a choice, she would shun them in favour of reliable adults. In my mind's eye I see her sitting alone, fumbling with her lunch box, a fizz of frustration welling inside which will remain bottled up until bedtime. While she is entitled to some classroom help, her high IQ scores mean it will not be as much as we hoped. But these tests don't measure her vulnerability, which wears no disguise, and is as tender and raw as newly exposed flesh. Will the muddled love of her family these past six or so years gird her against the tragedy of being misunderstood, the sorrow of rejection?

While I have been heartened to see other children like and accept her, it's the adults' reactions I worry about. What I have discovered since her birth is that discrimination can be largely a subconscious affair. I am sure there are people who would be mortified to discover how they have excluded her without intention.

There is an English study done by some nappy company that says the first day of school is as stressful for mothers as going through a divorce. How ironic. Unlike the relief that separation brings, I will miss her company. I have grown accustomed to the endless questions which repeatedly puncture my daydreams and conversations, and to which I have grown uncharacteristically tolerant -- most of the time. I will miss lying next to her on the grass making shapes in the clouds or finding rhymes for words -- a game for which she has remarkable skill. I upped the ante recently. "Broccoli," I said, in a mischievous moment, to which she replied, without batting an eyelid, "Monopoly". I will miss her sophisticated sense of humour; her impressive impersonation of Cliff Richard, which can always make me smile at bleak moments.

Most of all, I will miss the timelessness of her childhood. Her life, from now on, will be run with one eye on the clock. There is no doubt that her shocking entry into our world has brought its difficulties, but I wouldn't trade a second of the tears and the chaos, the botched imperative of love.

As with her sisters, I have made her a pocket doll to accompany her on her first day of school. It is sewn from her old baby clothes, in a clutching attempt to freeze-frame a moment in time. The doll wears an odd expression, one eye is higher than the other and the mouth is drooping. Wedged between the seams are several expletives and the odd thumbprick of blood, because the truth is I detest sewing. I hope she can see through its flaws and know that it was made with love.


Kathy Evans is the author of 'Tuesday's Child', published by Gill & Macmillan

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