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Health & Fitness

A Pancreas Wounded: A Mother's Perspective

It was July 1st, and for the past few weeks, Danny didn’t look good. No fever, no stomach, ear, tooth, or body aches, and no sore throat. No swollen glands, no sign of infection on his skin. I couldn’t put my finger on why Danny didn’t look good, but it was the kind of not good that triggers the maternal panic button. A perpetual bullet of activity, his desire to hang out with friends diminished, and when questioned, he stated he was too tired. The best I can describe it, he looked “mystery virus” worn out. To pacify myself, I felt his forehead often and continually asked if he was feeling ill. I chalked off his sluggishness to his upcoming birthday – a growth spurt, perhaps.

Later that week, my husband, Danny, and I headed to my daughter’s apartment in Amherst, where we were looking forward to a five day vacation and a two day lacrosse tournament that Danny was participating in. The evening before the tournament, we went into town and treated the kids to an ice cream. Danny ordered a large smoothie and sucked it down like it was his job. A few hours later, he complained of back pain. Just touching him made him wince in discomfort. I went through the laundry list of potential ailments, felt his forehead, and wondered if it wasn’t his appendix. The thought of him playing in a hundred degree heat on the following day made my stomach lurch. I went to bed the kind of unsettled you get when your kid is so sick you want to sleep next to them with your hand on their chest so that you can feel it rise and fall. The next morning, I awoke to what I’ll forever refer to as my ‘God moment’. I opened my eyes with this thought: What if it’s diabetes? I promptly phoned my girl Sonia, whose son was diagnosed two years ago.

“Is he drinking a lot?”

“He is. The other day, I yelled at him for downing a half gallon of orange juice in one gulp.”

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“Is he eating a lot?”

“A ton.”

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“What about going to the bathroom?”

“He’s mentioned having to get up a couple times a night,” I said, worried the symptoms were too close for comfort.

“Is he tired? Lost weight?”

“He looks like the walking dead, and yes, he looks thinner. This past week, he’s complained of blurry vision. I was going to call the eye doctor on Monday.”

“Okay,” Sonia said calmly. “I’m not saying that it is diabetes, but if you told a doctor what you just told me, they’d be taking his blood sugar. I think you ought to get him checked out, like now.”

Flash forward to the urgent care center and the taking of Danny’s blood glucose.

“It’s 587,” said the concerned nurse’s assistant.

“That’s damn high,” I replied, feeling the room spin.

“Yeah, it is,” he said, and left to get the doctor, who promptly called an ambulance.

Within the half hour, we were at Baystate Medical Center, where Danny was stabilized. From there, we were sent to Children’s Hospital for a two day stay where we were given lessons on my son’s diagnosis, Type I Diabetes.

You know how when a diagnosis is given to you or a loved one and you try to skirt the issue? Try to find a way around it, like if you think of enough counter afflictions, maybe they’ll change their mind?

That’s what I did. I wanted it to be anything else – mono, appendicitis – something that would be a temporary pain, not a lifelong hindrance.

I questioned my son’s diagnosis to every nurse or doctor that entered the room. I told them that perhaps the diagnosis was made in error, that maybe it could be something else. Danny was on prednisone for poison ivy and that does elevate blood sugar, which could, I argued, give a false reading.

“Prednisone can elevate blood sugar, but not to 587,” was the usual answer.

It wasn’t until I was sitting across from the diabetic counselor that the diagnosis sunk in.

“I keep thinking the prednisone is giving a false reading,” I said.

“Not likely,” she replied.

“But it could be,” I pressed.

She looked me in the eye and said, “I wish I could say otherwise, but listen up; there is nothing else this could be but diabetes.”

Ugh.

For a solid month, my husband and I ran on automatic pilot. Our job was to check Danny’s blood sugar 4 to 5 times a day, including in the middle of the night. We administered two kinds of insulin, one during the day, and one for bedtime. There were calculations that involved carb counting, meaning my lifelong aversion to math promptly came to an end.

A month into his diagnosis, here’s how I felt when hit with the realization that my child had an illness, which if not treated properly, would threaten his existence: like the pointy end of a spear hit me center gut.

In mid August, I finally had my break through (Some may say breakdown. I’m giving it a positive spin). The emotional numbness had worn off and I was left with a cumulative and unsettling trauma; it had been a long summer of sleepless nights, daily learnings, doctor appointments, blood tests, and more follow up appointments. I felt irritated when well meaning folks told me that diabetes wasn’t a big deal, that one can live a long and happy life. I’m in agreement with the long and happy life part; not so much on the big deal part. Diabetes is a big deal and can affect major organs in your body, including heart, blood vessels, nerves, eyes and kidneys.

As one doctor said, “How you treat your body will determine whether you live to fifty or to eighty.”

Try telling a teen that.

My break through/breakdown came at the most inappropriate time, in the middle of the work day. Luckily, my girl Susan was there to pick up the pieces. Through my sobs, I expressed the fears I had been holding tight to my chest of what could have happened to my son, of the lack of control I had over this disease, and the overall fear of losing him.

“It’s like a constant background noise in my head,” I said. “I think about his well-being all day.”

“Of course you do, and of course you’re upset,” she said. “You’re mourning the death of that part of his pancreas.”

Susan was so right. Losing his beta cells was losing a part of my son, but it wasn’t losing my son. After my break through/breakdown, I felt better. Once I realized I no longer needed to think like a person in crisis mode, I took steps to mentally right-size the situation. This wasn’t my disease, it was my son’s. I was looking at it from a mother’s perspective, threatened by the potential loss of my son and “what could have happened” had we not gotten him to the hospital. That’s when I decided to get his take on the diagnosis.

“It sucks, but there’s nothing I can do about it.”

Fair reply, don’t you think?

Danny understands his diagnosis is not something to take lightly and has proven to be amazingly resilient, faring much better than my husband or I have. He’s also developed a level of maturity I hadn’t expected. It took under a month for him to take over the regimen, and now he’s the supervisor of his diabetes. My husband and I, along with his brother and sister, are his team of coworkers.

Sonia has been my go-to guru, who I’ve called with a multitude of questions and/or observations, one of which is the confusion between Type I and Type II, two unrelated diseases.

“It can be frustrating at times. People don’t understand that Type I isn’t about sugar. It’s not about cutting out one food item or one food group. It’s about every food group, and accounting for just about everything you put in your mouth. Cheating isn’t an option; there isn’t a Monday morning do-over. Type I isn’t a diet you can break,” said Sonia.

Over the summer, a friend noticed Danny checking his blood sugar.

“You’re being very responsible,” she commented.

“I have to be, or I’ll die,” he replied.

Again, fair statement, and as his mother, it’s something I would like him to always remember.

Danny is currently in the honeymoon phase of diabetes, meaning not all of his beta cells are destroyed. For reasons no one can explain, his body is producing insulin; in fact, he has periods where he struggles to keep his blood sugar up. Currently, he’s living the dream, back to the good old days of eating whatever food he wants without worrying about blood sugar spikes. I’m buying chocolate versus white milk, and am happy to do so. Because it won’t last forever. When all of his beta cells are destroyed, his sugar will elevate and he’ll be insulin dependent for the rest of his life.

Although I have my moments, we don’t talk about diabetes like it’s a bad thing; we consider it more of a nuisance. We try not to micromanage, but do keep an eye on his numbers. The initial fear that he was going to go into a coma with the littlest sway of his glucose has disappeared, replaced by knowledge and time, and witnessing how well he has taken care of himself. I’ve even stopped trying to talk him into getting “Type I” tattooed on the inside of his wrist so he never has to worry about forgetting his bracelet.

This is my new normal (said without pause): “How was your day did you check your blood sugar?”

This is Sonia’s: “Hi, run your number.”

I’ve considered celebrating the death of his betas (which I’m sure he’ll moan over and won’t participate in) to commemorate the ending and beginning of this just begun journey. Maybe I’ll even sport a diabetic mom tee shirt, or be one of those people who post diabetic things on my social media wall. I recently started browsing Pinterest for diabetic posts, some of which have made me giggle. When I showed Danny the diabetic humor with a chuckle, like it was our inside joke, he rolled his eyes and said, “Momm, you don’t have diabetes, I do.”

He’s right, but because he’s my son, I feel like a first cousin to it, and it doesn’t mean I can’t laugh. As with other lifelong diseases, one quickly learns that a little humor goes a long way. And humor never hurt anyone.

Crash course in Type I Diabetes

This is a high level overview of the way we process food: You eat, glucose passes into the bloodstream, and insulin is released, which regulates your blood sugar. Now onto Type I diabetes.

Type 1 is an autoimmune disease, meaning that, for reasons unknown, the body, thinking it’s its own enemy, attacks itself. What this means for a Type I diabetic is that the body attacks and destroys insulin producing cells called beta cells. Beta cells will not repair, and new ones will not be produced. Once they’re gone, they’re gone, and so is the body’s ability to produce insulin. Because of this, a Type I diabetic will need insulin via an external source in order to live.

End of course

Want more info? Visit this site. http://www.diabetes.org/diabetes-basics/diabetes-statistics/

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