Home / Opinion / Blogs /  THE MOPPET SHOW: Love in the time of Kyra

Our daughter apparently, has a boyfriend. And not only does she have a boyfriend, he’s an older man. At this point, as I’m reading this aloud, my mother indignantly interjects, “Not a boyfriend, an admirer, she hasn’t responded." All right then, but he’s still an older man. Almost double her age actually, around nine to her five. And according to the school bus driver of their elementary school bus, he thinks she’s the “most beautiful girl in the world".

Apparently, according to Miss N, our ever smiling bus driver, he’s been wanting to sit near Kyra on the bus since the day he saw her, but isn’t allowed to. It’s a special bus, for children with disability, and no, I don’t know what special needs he has. Kyra, incidentally, among other things to deal with, also has hypotonia, which, in non-medical Greek, means she has low muscle tone for reasons unknown, a problem that sometimes affects motor nerve control. She also has another peculiar problem—extremely high tolerance of physical pain, which means that if she hits herself on something, or falls down, or hurts herself, she doesn’t always react and that’s a real problem. One of our nightly routines at bath time, for instance, is to check every inch of her body for any swelling, bruises or scrapes, to feel under her hair for any cuts. She has no speech either, and that doesn’t help of course, but you don’t want anything festering.

She doesn’t always pay attention either. I tell the aide on the bus that that is because she is completely deaf (I must defend my child!) but personally, I just think it’s because she’s stubborn, and like I said in my last piece, she gets that from her dad’s side of the family. Anyway, she has to sit near the aide, to prevent her from getting into any mischief (or getting hurt I suppose), so young fourth-grader C, moons after our Kindergartener from a distance.

Even as I’m thinking about the absolute pleasure I’m going to have, telling Kyra’s already overprotective daddy this, especially as he’s thousands of miles away across the Atlantic, Miss N, who clearly adores Kyra, indulgently adds, with all the flair of a seasoned matchmaker, “He (young C, that is) is a genius." She waits for me to ask the obvious question and I don’t disappoint her. “Er, how is he a genius?" And she happily delivers the pièce de résistance: “He was playing Mozart on the piano at the age of three!!!" There were really multiple exclamations in that statement. Ones that abounded in reflected glory, and well they must.

I am suitably impressed and look amazedly at my child, who has inspired such devotion from a genius in the space of the two weeks since school began. Said child is clearly unmoved by the emotion around her, and is chewing on her ponytail, a favourite pastime. I look back at Miss N, and notice that a car is coming up in the distance and the bus needs to move. We have had time for a quick chat as Kyra is first up on the morning route, the bus was very early and the road was empty. I quickly ask a last question. “He’s a musical genius who was playing Mozart at three; does he know she’s completely deaf?" Miss N smiles and says, “Yes, he does, and he thinks it doesn’t matter. You know, as he says, Beethoven was deaf."

Out of the mouth of babes! I laugh, delightedly, and wave goodbye, as they begin their day’s journey. I go back into the house, still smiling. I get onto Skype and call the husband, who mournfully tells me of the unlamented Soviet influence on Finnish architecture. I interrupt excitedly, and tell him about his daughter’s young swain instead. There’s dead silence for a moment and then, with panache, my wonderful cowboy plays his expected role of father-protector, “Genius huh? How will he play the piano once I get through with…" Then he stops, we’re laughing too much for him to complete the sentence. This is such a slice of normality in an otherwise terribly stressful summer, nay, an otherwise terribly stressful life of any parent of a child with multiple special needs.

This summer though, has been an especially difficult one on Kyra’s front, right from March end, when she tested positive for H1N1, developed a super-high fever, and had to be rushed to the ER at Inova Children’s Hospital, about 25 minutes away from our home, and put on an IV, she was that dehydrated.

Let me tell you how crazy it was. When we left our home, her temperature was 104.5, by the time we got her to hospital it was a 105.8 degrees fahrenheit. It took her doctors, all seasoned pediatricians, over six hours to bring her fever down to just under a 104 again. She was back on an IV drip in the ER the next night, with an even higher temperature, before it subsided.

She hasn’t tested positive for H1N1 again, but between then and August, she’s had seven more episodes of 104.5+ fevers and several episodes of fever that was slightly lower that we haven’t even counted. And there’s no explanation for this, she’s been tested for everything under the sun, and beyond, poor baby. And all the while, the rest of her special needs go on in any case.

Just so you know, if I sometimes seem unsympathetic to friends who tell me their child fell down and skinned a knee, or has the flu, or has a really bad cough, it’s not that I’m not sympathetic. I feel for them, after all, everyone’s problem is paramount in their lives, but I don’t really have too much to give, beyond a point. Sometimes, the business of keeping it all normal and sane for our precious child, to make sure she grows up as normal as possible and knows she’s loved, takes tremendous effort. But I’d like to think we’re doing a decent job. With a lot of help from a large, loving circle of family and friends.

Meanwhile, I know that the husband and I are both thinking about our summer, and Kyra, and before our Skype call can degenerate into heavy breathing for all the wrong reasons (get your minds out of the gutter, I only meant sad sighs), suddenly, I say, “We’ve got to grant him this, he’s got great taste…" Again, there’s that little silence. “Huh?" says the hubby. “You’re still thinking of that genius kid?" “Yes," I laugh.

“Do you really want to know what I think about how this is just a prelude to what it’s going to be like as she gets older?" he responds, a real killjoy. “No," I say. And like other parents of beautiful young daughters, we agree to drop a subject we can avoid. For now.

The writer is a former journalist, who moved from New Delhi to the Washington, DC, area in May 2012 with her American husband, to be closer to Johns Hopkins hospital, the Kennedy Krieger Institute, and the Fairfax County Public Schools system (which has a top notch special education programme), on account of their toddler daughter’s multiple special needs.

The Moppet Show is a blog by Kadambari Murali Wade about her experiences of bringing up a child with multiple special needs. A new blog entry will be published every Friday.

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