Wyn Evans of “Musings of a Proud Dad : beating Downs barriers” shares an article that was recently published in the Cardiff Times in Wales. He shares his love and joy of being a Dad and the importance of our mission.
A Wednesday morning, 0930 hours, and The Girl is not yet in school. My mood is as overcast as the weather outside. It is her six-monthly visit to the Thyroid Clinic at the UHW. As a baby she had an underactive thyroid which now has to be monitored. This is a common problem for kids who have Down syndrome (DS). Untreated, this condition can slow brain development. Treated, the doctors prescribe a daily dose of Levothyroxin to bring her back into balance.
The nurse takes The Girl’s details: height 112.4 cm (3’8″, The Boss was 3’6″ aged 12 so The Girl is a positive giant); weight 20.8 kg (3st 4lb, so she’s officially as heavy as Wookie our puppy). My daughter goes back to the play area to await the consultation. We talk and laugh nervously. The nurse calls us back when she is prepared: “Miss Evans, it’s time to take your bloods” she trills optimistically. The Girl stops dead in her tracks and her face whitens. In a LOUD, panicked screech she pitifully cries: “Pleeeease, I don’t like bloods, thank you”. It takes two of us to hold her steady while a third tries to draw the blood and a fourth waves toys around to little apparent effect. The Girl is wedged under my left arm. A nurse is straightening my daughter’s right arm and trying to hold her legs still. We had attended the clinic a week previously but, counting myself, there were only three of us available to hold her still and the nurses had failed to get any blood at all. So they told us to return in seven days when they would also have available a Play Coordinator.
She may be small but The Girl has an unbelievably strong grip. Her polite though loud request to desist has now morphed into a banshee wail of protest. The needle is not in yet. I imagine the assembled waiting room are all planning to do a runner – or call the police. We promise her stickers. I tell her I will order her a Princess Sophia cup with her name on it. The Play Coordinator promises her she can have a go on the iPAD. Despite Macbeth’s assertion that “if it were done when ’tis done, then ’twere well It were done quickly(1)”, we are forced to take our time. Then again, killing Duncan was probably an easier task than taking bloods from this unwilling child.
‘Twas ever thus. She’s never liked bloods. To my shame, in extremis, I have even used it against her (“behave or we’ll have to take bloods in the hospital”) but I felt such a heel that I never used this negotiating tool (threat) again. The moment the blood-taking is finished and the plaster is on the tears dry up and she happily squeaks “look I’ve got a plaster” and holds her arm out straight at a 45 degree angle from her body, where it will remain until she forgets about it. This can take a while. The Boss says The Girl is a drama queen and takes after me. I stomp out of the room and slam the door. In fairness, I think she has a genuine fear, or at least a strong dislike, rather than attention-seeking.
But she was born for the stage even if she is not a ‘drama queen’. She loves performing. The Girl goes to ballet every Tuesday evening. She loves it. Her tutor is pleased with her. It can take kids with DS a little longer to master some movements; not because of intellectual deficits in understanding the task at hand, but because of low muscle-tone and control. Sometimes this never much improves; sometimes it does, allowing kids who have DS to reach the same levels as kids who do not. In ballet class before Christmas, there was a prancing, high-stepping run the kids would rehearse, diagonally across the room, which looked like an Arab mare doing elegant dressage. At home, The Boss would help our daughter practise this movement: “… this leg first, jump, kick; now that leg, jump, kick…” and so on. After a few supportive cries of “that’s it, you’re doing it well, good girl…”. The Girl piped up with “YOU do it Mammy“. The Boss has MS and her balance is not the best. In fact, their different conditions make mother and daughter almost perfect partners for this pas de deux. Her mother demonstrates… and The Girl let’s out a peal of raucous, ribald laughter: “mammy, you look like a horse”. She breaks down with belly-laughter. As do her parents. (Both girls know that if they ask me to demonstrate, I’d fall over my own feet.)
Moving on a few months. It is Sunday 6th March and the Barinowsky School of Ballet is performing two ballets at the Memorial Hall in Barry. The juniors are representing Spring-time and the older children are portraying the Wizard of Oz. There must have been over one hundred children across the combined shows and many hundreds of parents and friends in the audience. The kids, without exception, were stunning. Dressed in their costumes they looked like the butterflies, flowers, rabbits and so forth that they were playing. Without exception they all looked radiant and performed in time with the music and one another, gracefully splitting into smaller groups in counterpoint to each other. There wasn’t a dry eye in the house and every parent and carer there had hearts overflowing with love and pride. And us? We saw our little one perform equally with her peers. She remembered and mastered her steps and movements with no quarter asked or given to her DS. She was ‘just’ another one of the 100-plus children all of whom stood out for their joy and the quality of their performance.
When we discovered in pregnancy that there was a high chance of The Girl being born with DS we were advised by medical staff to consider having an amniocentesis test. We felt that there was an element of unspoken pressure to this effect. The test would confirm the DS one way or another but would also increase the risk of a miscarriage. We wanted our child whatever her condition so refused the test. We felt that the medics were pushing for the test in order to allow, perhaps encourage, a termination of pregnancy, had DS been confirmed.
This morning, I came across a blog by Mike Sullivan(2), a spokesperson for Saving Downs, a New Zealand-based body whose mission statement is “to ensure that antenatal screening exists only to provide unborn children with Down Syndrome and their parents with life-affirming, unbiased care through education, support and understanding” (3). Looking at international data he concludes it “reveals a clear pattern of a widespread and systematic programme of birth prevention directed towards the Down Syndrome community”. When The Girl was an embryo I feared the unknown that was DS. I had no idea that The Girl would be the finest thing her mam and I ever did or will do. But she is. And it’s not because of her DS or in spite of it. Like over one hundred of her fellow ballerinas, it is just because she is a lovely/frustrating, wonderful/annoying, and life-affirming little madam.
As usual Shakespeare sums it up. She’s a ‘Player’ and the world is her stage (4).
Wyn also blogs at Musings of a proud Dad.
(1) Shakespeare W, Macbeth, Act 1 Scene VII. http://shakespeare.mit.edu/macbeth/macbeth.1.7.html
(4) Shakespeare W, As You Like It, Act 2, Scene VII. http://www.poets.org/viewmedia.php/prmMID/15740