“No, silly, old bear! You’re braver than you believe, and stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart, I’ll always be with you. I’ll always be with you. I’ll always be with you."

— ‘Pooh’s Grand Adventure: The Search for Christopher Robin’ (Disney)

It’s Friday morning on the US East Coast. I’m sitting in front of my laptop and trying to find that extra something inside me to write this week’s column. The last few days have been terribly hard, and the days and weeks to come could well hold more of the same. And I have no idea where to start.

Perhaps I’ll begin with a promise, one that, at the moment, is difficult to keep. Five years ago, not too long after she was born, we found out that our child, unfortunately, seemed destined for a life that would be more difficult than others’. Wyly and I promised ourselves then, that the one thing we would do right, whatever happened, would be to bring our baby up in a happy home, surrounded by light, love, laughter, and most of all, hope — the hope of a better tomorrow, helped along by a happier today.

We’ve really tried to do that, come what may, and the process has sapped us, shaped us, and invariably, strengthened us, but days like these last two, I must admit, hold the ability to shatter us. This particular story began six months ago, perhaps even three years ago this November, but it really got into high gear in August and culminated in my almost breaking down in Inova Children’s Hospital’s Nuclear Medicine department, here in Virginia, on Wednesday, 29 October.

Kyra and I, accompanied by S, Kyra’s CNA aide, had been in the hospital since 7:20 a.m or so. We’d been waiting weeks for an appointment for something called a HIDA scan. It’s a procedure that apparently has doctors divided as to its usefulness, but is one that was prescribed, in K’s case, as another measure to double-check the ejection factor of her malfunctioning gall bladder.

Now: Three years on, zero weight gain later, we’re in northern Virginia, trying to find out what’s going on with her body
Now: Three years on, zero weight gain later, we’re in northern Virginia, trying to find out what’s going on with her body

The major event that happened that year, in 2011, was multiple surgeries for cochlear implants. Yes, “multiple," but I’ll tell you that tale another day. We didn’t overly worry for the most though, as she had become taller. Her doctors and we noted the lack of weight gain, but when you have a bunch of existing problems, you tend not to think of others that are as yet hypothetical.

It wasn’t till the middle of last year that we started thinking about this more, because she began showing symptoms of a stomachache more often than not, and pulling her knees up and curling up in a ball. As always, we had to make assumptions, as she can’t tell us exactly where it hurts. Her scans and several blood tests didn’t show anything significant, so we began monitoring her meals and told ourselves to relax; many children had tummy issues that eventually settled. I did begin the process of maintaining a food log though, which told us she was getting over 1,600 calories a day, of really balanced meals, which, when you’re that tiny, is a lot! We figured it was just super quick metabolism.

That was till early this year, when she began pressing my hand down on her tummy, repeatedly. We were then sent to a pediatric gastroenterologist in early March. He was gentle, great with Kyra, and very cautious about jumping to conclusions. He recommended we first do something called a barium swallow video study, and a speech pathology evaluation, before we examine her for anything else like malabsorption of food of some sort, or eosinophilic esophagitis — EE, a reactive immune system disease that damages the esophageal tissue and causes digestive issues. Both the barium swallow and the speech path eval basically told us she was a) Swallowing without a problem, and b) Had no oral motor issues.

By her fifth birthday in May, which was celebrated between appointments with her gastroenterologist and cardiologist, she had been given a diagnosis of “failure to thrive," which, we’ve come to learn, is a generic term for when a child is unable to retain calories or nutrition, or gain weight, for unspecified causes. But further diagnoses was put on hold because by then, we were in the middle of a long summer of super-high, 104.5-plus fevers, which, I’ve mentioned in previous posts.

For those who wonder how difficult choices can be, let me tell you, they can be traumatic. A horrible July rolled by, one that saw me grapple with the emotional toil of being unable to leave my quite sick daughter and travel to Delhi to see my father. He had been moved into home hospice care by then and I never got to see him in those last months, or be there for my mother, or even attend my father’s funeral at July end. Mere hours after my dad died of colon cancer, we were told by Kyra’s doctors they had found lesions and cysts in her stomach and evidence of a stomach bleed, indicative, at the very least, of gastritis.

Though they told us the probability of malignancy was low, as her blood work didn’t indicate it, they would have to rule it out, and took multiple samples from her stomach, duodenum and esophagus to be tested. Her doctor told us not to focus on it, but under the circumstances, it was difficult not to think of the C-word. We were also sent for an abdominal ultrasound, one that was supposed to last 15 minutes but landed up being an hour-and-a-half, with a bunch of doctors being called in as they couldn’t locate her gall bladder and saw some potentially major problems with her liver.

That, and a period of medical treatment and endless waiting on appointments, brought us to this week, a last minute appointment actually, which also meant that my husband, who is less flustered than I am at these times, was traveling on work. So on Wednesday, Kyra’s aide and I watched as the nurse put an IV in Kyra’s arm, to enable a radioactive dye they would then track through the hepatobiliary system — her liver, gall bladder, and bile ducts.

Our daughter held up really well for the first two hours of the scan and imaging, playing with the nurse, her chewy tube, watching Nemo on screen. We were supposed to be done by then. We weren’t. Three hours and some evidence of 5-year-old boredom later, we had been told we had an “abnormal scan," the nuclear radiologist had called her GI specialist, and asked us to wait as her doc was coming in to the hospital to talk to us.

That one hour we waited seemed much longer, and was hard. The crazy part about all this, as anyone who spends time around children with special needs knows, is that they sense emotion, moods, feelings, and while that’s okay for the most, sometimes, it affects them adversely. So while my mind was going places it shouldn’t, and panicking, I was trying to stay calm, and keep K happy. But yes, I nearly broke down when the nurse removed Kyra’s IV, after five hours in her arm, and my beautiful baby girl, who had not shown a hint of tears, immediately held her arms up to the nurse for a long hug.

Well, the doctor came in and told us Kyra would have her gall bladder removed. In addition, they would send in another dye to look at what was going on inside, and then possibly, put in a stent to drain debris. She is also going to have a liver biopsy. I picked up the phone to call my husband, and asked him to come home, both of us struggling not to weep as we spoke. But we didn’t cry.

I’ll tell you what keeps us from collapsing. On Thursday morning, we had more tests and more fasting. I woke K up, thinking, “My poor child, I can’t feed her again." A little later, after I got her ready, she took my hand, led me to her high chair and raised her arms to be lifted into it for breakfast. She was clearly hungry. Carefully, I raised her up, held her tight in my arms, and turned away to take her to the radiology lab. Her face scrunched up, she looked like she was about to wail, and started biting the base of her right palm, in frustrated anger.

I immediately stopped the biting, and kissed her palm instead, and then her cheek, my face scrunched up, ready to wail too. Suddenly, I felt a baby soft cheek on mine, and a little hand stroking my face. We looked at each other, and she settled peaceably against my chest, as I sat on the floor and put on her shoes.

She took my hand then, having calmed us both, and we stepped out into the morning sunshine, ready to battle another day. Twelve hours and two flights later, Wyly got home, and we held each other long, as we looked down at our sleeping child. We don’t know what next week holds, or the next month, but as I begin to write this blog, and look for inspiration, one of Kyra’s little books, one that I’ve never been able to read to her from, calls out to me from her shelf.

The greatest wisdom is invariably found in words written for children. And so it is with the incomparable Shel Silverstein. “Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be."

Wish us luck. Hopefully sooner than later, we’ll know what’s going on, and our Moppet will be somewhat pain free.

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.

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