A Little More History

Yesterday Violet, from Pumplandia, wondered "if some kids have greater resilience than some adults in their ability to adjust to a life-changing illness." saying that she imagines "this depends very much on the individual." She got me thinking back to the hours and days after that awful diagnosis moment. And in thinking back, I believe there is a great deal of truth to Violet's statement.

Immediately after discovering that he had diabetes, Joseph was devastated.

But obviously that's not where he is now. Nor, incredibly, was it the place he occupied later that very same day.

We were told, in those first minutes, that Joseph needed to be admitted to the hospital that afternoon. A bed would have to be found. And because three other children in the area were diagnosed with type 1 that day (that's right-- three other children), there would be a wait to find out where we would land. During this time I had called Ryan to tell him what was going on, and to have him come with Evan to the pediatric office. When he arrived, we just looked at each other, and communicated volumes in the exchange. Then Ryan grabbed hold of Joseph, and held on so tight I thought he might break him. Later Ryan would tell me that after he'd gotten my call he had briefly looked online, wanting to know what we were dealing with. He'd read some of the worst case scenarios for the disease. It was the first time he'd really cried in years.

After nearly two hours of waiting in a tiny exam room, we were informed that Joseph was in. We were to drive to the hospital-- 5 minutes from the doctor's office-- and plan on being there until Sunday night. This was Thursday afternoon.

Yes, when Joseph discovered he had diabetes he was scared-- for about half an hour. After we reassured him that everything would be all right -- that we would learn how to deal with this, and he would be fine-- he calmed down. And then it dawned on him that there was now an explanation for his bedwetting, and that we could DO something about it. His spirits began to lift. And when he found out that in the hospital he'd have cable TV, Playstation and diet soda -- all things he did not have access to at home -- he was positively psyched.

At the hospital, Joseph was a model patient. More like a guest really. No IV. No real signs that he was sick. Ordering in room service, a little extra for any friends who happened by. And with me and Evan sleeping in a cot next to his fabulous adjustable bed, it felt like a slumber party.

On Friday, Joseph listened patiently to the Dietician as she explained to him the basics of nutrition. And after she gave him the definition of a carbohydrate, Joseph said in a calm, and not the least condescending, voice, "I think you must be used to talking with kindergarteners. I already know this. I learned about nutrition in first grade."

When he met our Diabetes Educator on Saturday, Joseph listened carefully to everything she said -- knowing that when our session was done he could go back to playing a video game. Checking his blood sugar was a snap. Joseph has never been one to shy away from needles. It's always been the emotional stuff that's gotten to him. He immediately began, not only doing his own finger sticks, but giving himself shots in the top of his leg. Amazing.

And when I expressed my concern about how he would feel dealing with all of this at a new school, with new classmates, Joseph took my hands and said "Mom, you're the one who's worried about that. Not me." And I thought "Who is this child? This boy who can take in all of what is happening and handle it so calmly, and with such grace."

By Sunday, they told us we were ready to go home. "Huh?" I thought. How can we be ready for this? It was so big. There was still so much to learn.

But Joseph was ready. He couldn't wait to show his friends his meter.

Diagnosis Stories

A lot of these stories are showing up lately. I was reading Violet's wonderful blog this morning, Pumplandia, and was very touched by her diagnosis story . She is right when she comments that there is a great deal of diversity in everyone's stories. But I think the common denominator here is not simply the end result, but also the process of betrayal by one's own body. The feeling that you just can't trust it anymore. And in the time leading up to diagnosis, you have no idea why. Joseph felt this as he realized he couldn't go to bed at night without knowing if his pajamas and sheets would be soaked in the morning. He couldn't go for a walk or drive without fearing he might need to pee or, just as desperately, a drink of water. And, in reading Kerri's story as well -- though she wasn't sick in the time before diagnosis-- wetting the bed, and subsequently, having to wear “The Alarm” must have prompted a tremendous loss of faith in her own body. I don't know what that must have felt like as the child experiencing this, but as a mom who woke every morning holding her breath, hoping her child had a dry night, and inevitably feeling the pain as her son struggled to tell her about his accident, I have an inkling.

Like birth stories, these tales of transition share common markers – and these are important. They are an integral part of a journey that leads all those who embark on it to the same place– a new and very different life. Sharing the diagnosis moment and its precursors lets diabetics know that they were not alone in that early betrayal– the time when your body rebelled and you had no idea why.

And, going forward, in this new life of blood sugar checks and boluses, highs and lows, these stories reaffirm that you are not alone.

A Little History

So, I realize I started this blog sort of in the middle of things. Talking about basal rates, bolusing and blood sugars without really telling how we got here. I guess "here" is just over seven months post diagnosis. Astonishingly, Joseph is still considered "newly diagnosed." It feels more like we've been doing this forever. Although, every once in a while I'll come across a photo of him before he became diabetic. And it's almost like a blow.

Last August, I was preparing to go back east to visit my family. All six of my siblings and their families live in Massachusetts. On Monday the 16th-- just five days before I was scheduled to fly out with Joseph and Evan-- my younger sister Teresa called to tell me that our older sister Mary had breast cancer. It was good that I was coming out on Saturday.

On Tuesday, still reeling from the news about my sister, I received a call from a close friend here in Wisconsin. It seems that her 4-year old son had suffered an unexplained seizure that lasted nine hours and was only brought to a halt by putting her child into a medically-induced coma. Jan (that's the mom) was at the UW Hospital with her son. At this point I remember saying that if anything else happens my head is simply going to explode.

All this time I worried about the fact that Joseph had recently begun wetting the bed.

Bedwetting or "enuresis" runs in my family. My younger brother experienced this very same problem as a child. For the first two weeks I felt sure that's what it was. After all, Joseph was eight-- a common age for this issue. He seemed fine. Maybe a little thirstier than usual, but it was summer. He certainly wasn't guzzling water, just coming inside for frequent drinks. And he did need to pee an awful lot, but then again, he was drinking all that water...

But then I thought he looked a little thinner. Joseph's a lean kid anyway, but one morning during that awful week, his collar bone looked more prominent than it should. Ryan said "he's probably going through a growth spurt. " That was always his pattern-- a little paunch, thin out, then shoot up. But I brought the stick up out of the basement-- the one we use to mark off Joseph's height. He hadn't grown since the last mark. Two months earlier.

I looked on the internet. Scoured sites that discussed bedwetting. I'm a real research junky. If there is a question about anything, especially a health issue, I will search for the answers I need on the web. And I will be thorough. And yet, whenever I saw the word diabetes highlighted on any of those enuresis sites-- and there were many-- I ignored it. I never clicked on that link. I wouldn't even look at the symptoms. I wouldn't, that is, until I spoke again with my sister Teresa that Wednesday. I told her about Joseph and my concerns. Immediately she said I should have him checked for diabetes. Her sister-in-law's son was diabetic. She was very familiar with the signs. Then she got another call and put me on hold. I hung up the phone, went online to a bookmarked site on bedwetting. I clicked on the link.

Joseph's pediatric office agreed that, given his symptoms, he should be seen before our trip. I was to bring him in the next day-- Thursday, August 19th. That night Ryan assured me that our son did not have diabetes. But then I reminded him of what he told me the previous week-- that my sister did not have breast cancer.

The next morning I told Joseph we were going to see his doctor that afternoon, but first we would go shoe shopping. He needed new athletic shoes before the start of school in two weeks. Joseph, Evan and I had a great time. The kids tried on shoes and ran around the store. It just seemed so normal. Really, nothing could be wrong with my son.

Ryan came home for lunch so that he could take care of Evan while I took Joseph in for his appointment. The resident who first examined Joseph didn't seem too impressed with his symptoms. He had only lost two pounds since his last visit. Nothing to be concerned about. "It's possible he has a UTI" (that's what I told Joseph, that's what I'd hoped it was). Next, Dr. Edmonson came in, handed Joseph a small plastic cup, and asked him to go to the restroom and bring back a sample. Joseph was very quick. And so was the doctor. Not five minutes passed before the doctor was back in the room-- telling us there was sugar in Joseph's urine.

"He has diabetes. We'll do a blood test as well, but even if it comes back normal, the sugar in his urine almost always means diabetes."

A nurse came in next and poked his finger with a lancet. She squeezed the tip of his finger until a small bubble of blood appeared. Then she placed his finger so that it almost touched the end of a strip that had been inserted into a glucose meter.

5 - 4 - 3 - 2 - 1.

Joseph's blood sugar was 482. I broke down. So did Joseph. He cried, saying that he didn't want to have diabetes. "Mom, I'm scared."

We held each other, having absolutely no idea what this all meant.