Gripe time. I am exhausted. Really, really, exhausted. I’ve had two-and-a-half hours of shut-eye in the last 46 and it’s been nearly 18 hours since I last had even that. I’m also on a deadline to send off my column, and while I can probably stretch that a bit, there’s another little problem that’s more immediate and far more pertinent to my staring out blearily at the world.

Any of you who have had deadlines to deal with know that kind of exhaustion. It’s the sort when letters on the keyboard blur, when you’re typing by rote and just hoping that your laptop’s AutoCorrect isn’t off on a break, to whatever la-la land data validation functions go off to, to rest, recuperate and recharge, before they return to cause fresh torment.

Anyway, this was the kind of state I shouldn’t really have been writing, or trying to write, in, or doing anything but trying to sleep in. I wish. You see, there was this little problem, all 42-and-three-fourths-of-an-inch of her. The thing is, she was awake. At this point, I wasn’t certain if she had woken up or hadn’t slept at all. I didn’t really care about that particular point of difference. I just cared that she was awake and it was 3am, nearly 24 hours after I’d taken my mom to the airport at 4am.

Kyra’s tent is large enough for her and I to comfortably cuddle up.
Kyra’s tent is large enough for her and I to comfortably cuddle up.

I then walked across to our room to check on the hubby, made sure the fever he had hadn’t made him delirious or anything, or at least not more than usually so, and went back down to our hangout area, the family room, which also housed Kyra’s sleeping quarters.

Just to back up a bit and explain all this, Kyra sleeps in a tent (she really does), which sits royally in one corner of our really large family room. And before someone accuses us of any Potteresque treatment of our baby, let me quickly add, it’s not the closet below the stairs. It’s a pretty fancy tent, very roomy, with painted camels and a Rajasthani desert theme, large enough for Kyra and I to comfortably cuddle up inside, on the rare occasions she allows anyone else to enter her kingdom.

When we bought the tent in India as a third birthday present for her, just before our move to the US to be nearer Johns Hopkins hospital two years ago, it was an indulgent buy, a slice of India that we thought would be fun for her to play in. Leaving India and the life I had always known was tremendously hard, and I was looking for these little pieces of whimsy that would bring India into our home in the US. Little did I know that my impulsive buy would be a lifesaver. Seriously.

When we arrived in the US in May 2012, Kyra had not been sleeping regularly for months, about 10 months in fact, but because it had also been months of multiple surgeries, what seemed like headaches off and on, much testing and lots of travel to figure out our options, and given that she had had implants embedded on either side of her skull fairly recently, we put it down to a matter of her body adjusting to the situation.

To be honest, it also took me quitting my job and transferring what my husband invariably refers to as my “obsessive-compulsive skills" (I prefer detail-oriented) to managing our daughter’s medical needs, which made me realize there was a pattern to her sleep. Or lack thereof. If I hadn’t focused solely on her needs 24x7, we would have realized that something was wrong of course, but perhaps not how wrong, or at least, not quickly enough.

ROOM OF HER OWN: Kyra sprawls inside her tent, finally fast asleep, nearly 22 hours after she woke up, some of her friends around her. It’s been a long, hard day.
ROOM OF HER OWN: Kyra sprawls inside her tent, finally fast asleep, nearly 22 hours after she woke up, some of her friends around her. It’s been a long, hard day.

This neurologist, incidentally, would be the first of 18 specialists Kyra would eventually see for various medical issues that have cropped up over the two years since. Of these 18 doctors, 16 are currently listed as still actively treating her. More on the rest of them, though, another day.

What we found over those first 90 days of keeping our daily sleep diary, was that Kyra’s sleep pattern had rapidly progressed to being so erratic that if you added up all the minutes she slept, because it was just that—minutes here and minutes there, she was sleeping, on average, only between two-and-a-half to three hours in every 24 hour cycle.

Back to her doctor: They clearly don’t beat around the bush in this country. After a detailed history and examination of Kyra, a trillion questions more, or thereabouts, the neurologist looked at us, and stated, with a remarkable lack of dramatic flair: “You do realize, don’t you, that this is potentially fatal?"

She then paused. “Too late", I said, silently, keeping a clammy death grip on Wyly’s hand, as the doc perhaps realized that that top prize for best bedside manner had just swiftly and unceremoniously crashed from her grasp. “What I meant is, your daughter seems to have both sleep onset and sleep maintenance insomnia, an inability to fall asleep and an inability to stay asleep. She’s very young, and physically, very tiny, so the side effects of anything will be felt more rapidly. If left untreated, her body could potentially go into shut down mode," said our cheery physician. And then added, “Don’t worry, we can handle this." She smiled brightly— perhaps one of those secret signals we, mere mortals, failed to comprehend, one that was intended to indicate that all our worries were now about to end? Who knows?

That doctor, by the way, has a very good reputation. But, she wasn’t right for us because she never returned our calls and Kyra did not sleep better following the medicines she prescribed, so she’s no longer on our current list of practitioners. However, thus began our education into the arcane world of sleep, sleep tests, sleep patterns, sleep doctors, sleep potions, sleep medicines, and anything else that might possibly work, and everything that doesn’t.

We found, in the process, that Kyra is allergic to Melatonin, and also to Clonidine. She was put on something called Gabapentin, before being quickly switched to 0.25mg of a medicine called Clonazepam, which was increased to 0.5mg, then 1mg. She’s now on that, plus being back on Gabapentin. We learned not to listen to programs on the side effects of medication, or Google stuff, even though some of the medicines that some returning military vets are reacting very badly to on programs we don’t pay attention to sound remarkably similar to those treating our baby.

We found new sleep docs, a team actually, of a neurologist and a psychologist, at Kennedy Krieger in Baltimore; who we’ve worked with, laughed with, debated lines of treatment with and cried with, and who are as invested in Kyra as anyone can be. She matters to them and that helps us cope.

It was they who suggested, when we told them that Kyra was absolutely not sleeping in her bedroom in her bed, even with the meds, that the answer was not in making her sleep in our bed, it wasn’t good for any of us, but to get her to sleep in her tent. I have to confess, the first thought that came into my head at the moment, was something utterly unconnected. The carpet.

“All of us have moments in out lives that test our courage. Taking children into a house with a white carpet is one of them." That’s a priceless piece of advice from Erma Bombeck, and if you haven’t read her books, you must, but again, I am sidetracked. Here were my child’s doctors, giving me serious advice about a very serious issue, and there I was thinking about the tent being in the family room, which had wall-to-wall carpeting, light beige at that, if not quite white, and the potential for disaster to a carpet in a rented home. Snap out of it, woman, I chided myself. After all, it was the husband who had to handle the money and disaster protection end; I was now a dependent woman. That thought made me more cheerful, so I re-focused.

Their logic was this. The tent, at that point, was the one place Kyra seemed to consider her own, where she hung out knowing we were close by, playing with her, watching TV, chatting, or working on our laptops, a routine she was familiar with. Slowly, they suggested, we ought to try and let Kyra think of that tent as her room, within her security zone and place of comfort, which was our place of comfort—the family room.

It’s taken two years for things to stabilize. In these two years, we’ve probably had a total of six nights where we’ve slept before midnight, and I kid you not, this is all logged. I don’t remember when Wyly or I last slept more than four hours at a stretch in our own home without interruption. Or Kyra slept more than five. The family room is absolutely her domain now. We are occasionally allowed to share it for a few hours a day. She’s definitely sleeping better, at least five hours a night most nights, but of course, she’s on two sleep medicines a night too.

We still have to deal with the long-term effects of strong sleep medication on a little body, and will eventually look at how to go about reducing them—it will, apparently, be traumatic, something like dealing with de-addiction—but we’ll tackle one problem at a time. We feel good for now. Mostly. Unless we have nights like the last two of course, where I’m reduced to hanging out around the couch at night and watching her, just in case… even though the place is fully carpeted and there’s nothing she can hurt herself on. I am blessed with an imagination that operates on several parallel universes.

So while I wait for sleep, I might as well write. And gripe. And tell you our story, while she, oblivious, makes joyous sounds and plays with her family of stuffed snakes and bears and bugs in the semi-darkness of her tent, and tires herself out. If I move to hold her, it will reinvigorate her, she would have found a playmate, so I resist. I look at the time. It’s 4am. Those sounds are fainter, and then they trail off. I wait a bit more and peer in. My sweet baby is gently snoring. I kiss her little nose and cover her up. The room is hushed. Finally, sleep beckons.

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. Read the previous blogs here.

Close