The Day We Found Out K Was Truly, Deeply Sick

There is a moment of gripping terror in your heart when you realize your child isn’t just sick, but that she is sick.

For weeks, Kerrigan had sworn up and down that something was wrong. “My stomach hurts,” she’d say. Or, “I just don’t feel good,” she’d say. And I, her mother, who is supposed to know everything, didn’t know anything. I couldn’t could give definition to such obscure complaints.

“Well, what did you eat?” I’d answer, struggling to help put structure to something that seemed more and more to be a vague ailment with no real cause.

“I don’t know,” said the teenager, a typical answer when you’re 14 and you don’t know to tell your mother the symptoms that matter like, “I’m thirsty all the time, Mom,” or “I’m peeing in the middle of the night, Mom,” or “I know I’m losing weight, Mom, but I’m eating ALL THE TIME because I’m starving.”

The last of which I had noticed, but attributed it to an eating disorder.

“You know what bulimia is?”

“I’m not bulimic, Mom,” she’d say, exasperated, knowing better than I, her own body and that she was, in fact, sick, but without the ability to express why she knew, or how.

“I’ll call the doctor,” I said, and I did.

“She hasn’t gotten better since the flu,” I told the doctor. “Something’s wrong.”

“We don’t need to see her,” they said after I communicated to them the symptoms I was told, plus the ones I had noticed on my own…she was thinner, paler, surer that something was wrong. “Maybe it’s a food allergy. Start looking at that.”

And so we did. We isolated certain food groups, looking for allergies. Still she peed more and more and in the middle of the night without me noticing; me, who can sleep through anything, never heard her get up in the middle of the night, and she, not realizing it was a symptom, had no reason to tell me otherwise.

Not totally convinced it was a food allergy, her father and I started looking for signs of anorexia nervosa or bulimia, convinced the 35 pounds she had lost in just two months was her own doing.

“It’s not!” she swore up and down, tears in her eyes, “I don’t have an eating disorder!”

I stopped asking for her symptoms, mostly because I already knew what she was telling me, but partly because I didn’t know the right questions to ask. Very few illnesses run in our family and I was blind to the fact that autoimmune diseases ran in my ex-husband’s family, and so I was, too, as a parent, exasperated.

I called her father again. On a Friday. She was going to his house for the weekend.

“Please watch her this weekend, look for anything unusual,” I told him, almost frantically. “I’m taking her to the doctor on Tuesday, because something is wrong.”

She clearly wasn’t getting better. And mother and daughter were both at wit’s end with whatever was causing this vague array of symptoms. What was this thing that was responsible for her now-bony existence every time I hugged her?

She went to her father’s. It was Memorial Day weekend. And that Sunday, she decided to stay at my mother’s house before I picked her up the next day. Memorial Day. I won’t ever forget the frantic phone call from my mother that holiday morning.

“She only weighs 116 pounds,” said my mother, of my 14-year-old daughter, who stood 5’8” and now looked gaunt and sickly pale and had a sore throat. “Something is definitely wrong.”

I got in my car immediately, called her friends to, once again, check my theory of an eating disorder. They swore up and down they had never seen any such behavior. I told my daughter, in the car, on the way to Nationwide Children’s Hospital, “This is your chance. Tell me now if this is in any way self-inflicted.”

“I swear to you, Mom,” she said again, this time calm and reassured, because she was finally going to the hospital to get a diagnosis, “It’s not an eating disorder.”

And I believed her this time, because she is my child, and because I knew that she knew, if she was lying, the doctor would be able to tell. And also because, this time, there was a look of relief on her face. She knew something was wrong with her. Had known for a long time, but the mind of a 14-year-old doesn’t know medical terminology or symptoms or any of the ways to express illness except to say, “I know something is wrong.” And then it was up to me, as her parent, to believe her.

And so we pulled into the emergency room at Children’s where the initial physician, a resident, thought the same thing I had. Sized up her scrawny, bony figure and assumed incorrectly, as I had, too, it was the thing of teenage girls desperate to be thin or strep.

“I’ll do a culture,” he shrugged, convinced, as I had been, she was secretly throwing up behind my back.

But I had seen her face. Trusted her words. Knew my daughter. This child, who rarely complained of sickness, swore up and down she was, in fact, sick, of something with no name but which had eaten away 35 pounds in two months, and 10 percent of her body weight in less than two weeks.

“Test her for strep,” I said, before adding confidently and with the clear precision only a mother can provoke in the face of uncertainty. “But I am not leaving this emergency room until you run a full panel on her. Blood, urine, all of it.”

“OK,” he nodded, convinced, as I had been, that she would be released with a strong antibiotic and a few pamphlets on eating disorders within a few hours. He left and a well-meaning nurse standing by saw my seriousness and said to Kerrigan, “Here, go pee in this cup.”

The nurse looked at me and smiled, “Just in case he needs it.”

And in a few hours, my daughter’s cries for help over the last few months were answered with the sudden appearance of IV’s being inserted into her body.

“Just in case,” they said, but I knew it meant something much deeper was going on than strep, which was negative. It meant her body needed fluids, and, at some point, would perhaps need intravenous medications. But what medications? What was happening?

“The doctor will be in to talk to you,” they said.

Kerrigan and I looked at each other.

“It’ll be OK,” I said, as I looked at a mixture of panic and relief in my daughter’s face. She would be helped, she knew, but it would be at the expense of learning what was actually wrong. She stayed strong, asking questions about medical procedures as the nurses who came in and out worked on her IVs and drew blood. Lots and lots of blood. K told them she wanted to be a vet, maybe a doctor, and so hospitals and needles didn’t scare her, like they did me. I had to turn every time they inserted a new line; she watched and laughed at me.

And then, not one, but two doctors, women, came in. I could tell by the look on their faces what was about to happen. There was a strange mix of “good news/bad news” in their eyes that I already knew was, “Well, we’ve got the answer to the cause of your daughter’s seemingly endless discomfort, Ms. Greegor, but unfortunately it’s…”

“Type 1 Diabetes.”

My head, almost involuntarily, shook with surprise. Wait, what?

“She had ketones in her urine,” they said to my blank face.

What the hell is a ketone?

“She was in diabetic ketoacidosis when she arrived,” they said. It was a life threatening condition if not treated quickly, they said. Lucky you brought her in, they said.

Pin pricks
The sticks they use in the E.R. are larger to get more blood from the finger tip. So K had bruised fingertips with large holes for a few weeks after the visit.
All I could think was, “Kerrigan knew all along.”

I sat stunned.

Diabetes? All I knew of diabetes was that sometimes people lost their toes or feet to it; sometimes their lives if it was uncontrolled. But it didn’t run in my family.

And they used the word “disease.”

“It’s a disease,” they said. Like, a real one.

“The pancreas,” they said, “stops making insulin. Period. Your daughter will have to inject insulin into her body for the rest of her life.”

They explained some more but my mind was tuning them out with the shocking revelation. And soon, the doctors left, and I started to call in the support team…my mother, K’s father, Kerrigan’s aunts and uncles, especially her friends, who she would need now, more than ever, the same ones who swore it wasn’t an eating disorder, and they were right. And so was Kerrigan.

At the hospital
Kerrigan learning how to inject herself.
We would stay for three days in the hospital, they had explained, and we would learn everything and anything about diabetes. We would all learn how to measure carbohydrates and measure insulin and give shots and test her blood. But for now, we were stuck in the E.R. until they could somewhat stabilize her condition. They had to eradicate these ketone things, which meant flushing her system with LOTS of fluids through one IV, and then stabilize her blood sugar, which was over 600 when she was admitted, (the normal should be 70-120), through another.

“We’re surprised she’s even conscious,” they said. “That she’s not vomiting,” they said.

And when they said it, I knew how serious it truly was and how lucky, indeed, that we had gotten her to the hospital before we someday found her unconscious, without reason. And then I looked back at all the symptoms and wondered why I hadn’t put the puzzle pieces together. Was there something I missed? Did I not see something I should have? Which question could I have asked that would have changed it? What part of my own understanding and assumptions could I have changed to make it better?

And then, for the first time, I saw Kerrigan cry. Not a light sob, but a full-throat cry that caused her eyes to swell and turn puffy, that made my heart ache as though it was breaking right along with hers. Perhaps from relief to know that she wasn’t crazy, that she had been right all along but without the vocabulary or knowledge to say why. Perhaps from such a life-changing diagnosis that is, initially, disruptive and life-threatening, but, over time, becomes manageable, when cared for properly.

“It’ll be OK,” I said as the tears soaked her hospital gown and my shirt. “I promise.”

And she believed me and she returned back to her normal self in time for the Calvary to arrive and love her, which she desperately needed. Which I desperately needed, too.

K and Memaw
K with my Mom, who stayed in the hospital with us.
K and her friends
K’s friends rushed to her side the night she was admitted.
 

Soon enough, we were moved to the floor, and endured three days of intense education and training; Kerrigan learned how to give herself shots brilliantly—I was, as she said, “in need of a little work,” before my shots were any good. I had to apologize frequently for making her bleed or, worse, bruising her like a peach. Her Dad’s efforts were better and she laughed every time she pointed it out.

The doctors and nurses were brilliant and understanding and comforting, and I felt relief and a deep gratefulness that Nationwide Children’s Hospital was located here and I had access to it. I could never, ever, say enough good things about them or the care we received, both in the E.R., and on the floor. And then, when it came time for me to go back to my job at the Ronald McDonald House, I felt another wave of gratefulness that the House was there, in Columbus. For Dee Anders, the executive director, and for my boss, Ryan Wilkins.

Headed home
K was much happier when she left than when she got there!
I couldn’t leave Kerrigan alone for the first week or two, for fear of lows that would leave her unconscious, as she adjusted to her new insulin regiment of at least four doses a day. And I was new at my job, with no paid leave, and so, they allowed her to come to work with me that first week, to stay in the House during the day, so that I could work and take care of her.

I had volunteered for the House for six years and now I was an employee, but I didn’t fully realize the impact of the House on families until I was the family that needed it. That needed the hospital. And so I went to my knees in prayer and gratefulness that both had been there when my child was sick and needed someone to help her, to ease her illness, to bring her back to life.

And now, because of the care she received at Children’s and because of the love and support she and I both received at the House, she is healthy again. At a normal weight, living a normal life. Her disease, now joined by a companion—Celiac’s disease—is always at the forefront, making an appearance as you’d expect, but the disruptive sickness that she lived at its hands for months has dissipated. She’s preparing for Homecoming and hoping for a cure that, we believe, someday will come.

As a mother, I find new strength in telling her story in the hopes another parent will know the right questions to ask. Will help their child find the right answers, so they can be diagnosed more quickly and won’t have to suffer in silence, unnecessarily.

And this fall, Kerrigan and I, along with her father and family and friends, will walk for the first time in the JDRF (Juvenile Diabetes Research Foundation) annual walk to raise money for research to find a cure. A cure we believe can, and will, come in her lifetime.

Will you be part of helping Kerrigan and I find a cure? Donate to our walk to end type 1 diabetes today.  Click HERE. And if you’re so inclined, walk with us. We’re: The “K” team. A nod to “The A Team” and my daughter’s endless supply of courage and strength in the face of unbelievable obstacles she’s already faced in her young life.

K
Now healthy again, K is able to return to a normal life.
Thank you for any and all support for our walk, but most of all, thank you for any and all support of the House and the hospital. Without these two organizations, families truly wouldn’t be able to watch their children get healthy. They are miracle organizations. And I hope you continue to support both.

The way I see my daughter & mother

As mothers, we come to know our children by more than just quirks in their personalities or the way they eat their breakfasts or the kinds of foods they like. These things, these tangible ways of “knowing” our children, are fleeting. They last only so long as the child doesn’t change. But the minute you put your child next to another child at school who’s bringing Ho-Ho’s for lunch, your child suddenly has a craving for Ho-Ho’s that never was before.

The tangibles change with the changing child. A child not seen by friends or family for months or years will hear them marvel at how he suddenly likes his vegetables or she is now funnier than she used to be.

So, how then, does a mother always know her child? It boils down to the intangibles. The way they smell, a look in their eye, a certain way of being in the world ~ an attitude of “this is my place.” The things that are indescribable with words, but are known without pause by a mother’s heart to say “this is my child.”

My mother, like all mothers, will say things to me like, “You’ve always been like this.” Or, “I remember how you used to be like this.” They are never specifics she gives; they are always intangible in nature, as in “it was your way of being.” Headstrong, quiet, thoughtful, trepidatious; these were my qualities. And I always preferred being defined that way ~ as a set of indefinable qualities that bore out my essence of being, rather than a changing set of tastes.

My daughter, who now loves broccoli and doesn’t care for Lucky Charms, is defined by a relentless, fearless spirit. Since the day she could walk, she threw her shoulders back and owned her space in the world with a quiet confidence that made you want to look twice. Inside her was peace, kindness, joy, and a touch of mischievousness that I admired. Even now, there always seems to be a glint in her eye and a spark in her step as if she just did, or is about to do, something good for her memories but bad for my wallet.

The same is true for how we see our own mothers.

Photographs attempt to capture these elements of being on film. A great photograph is less about the technical aspect of the picture, and more about the qualities the subject expresses within the layers of ink. And in this, I feel lucky to have a couple photos of my daughter that almost perfectly capture these qualities of who I see her to be in this world. But the one that speaks most of her inherent being is the one below. Perhaps it is her posture, perhaps it is her eyes; but I guarantee, it is the essence of who she is. This is how I see my daughter.

Photography 1_Greegor

As for my mother, the photo below is how I have always seen, and will always see her: A tireless smile working to evoke a laugh from everyone around her. Not so she could laugh, but so they could. A form of empathy working overtime to bring joy to those closest to her.

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Do you have a photo or two that shows the essence of your mother or children? I’d love to see them!

Cheers.

Welcome!

Welcome to my website and blog! I’m so glad to have you along for the journey. Please feel free to share your thoughts and stories with me any time ~ I’m always up for a good tall tale or a heartfelt saga.

I hope, in turn, you’ll enjoy a few of my yarns, too. Storytelling is my love and passion. I put my adventures, romances, triumphs, and tragedies, out there in writing, on film, or as a piece of art. If it’s a way to tell a story, I want to be part of it ~ and probably already am.

Enjoy yourself, and by all means, share your thoughts and feelings with me anytime, either here or at steph@stephgreegor.com.

Cheers.

~ S.