Wednesday, May 12, 2010

Rufus' Birthday

It’s been one year. Twelve months. Fifty-two weeks. 365 days. 1,825 finger pricks. 2,140 injections. As of tomorrow, it will have been one year since Rufus The Bear With Diabetes became a member of our family. And, as it so happens, just about a week since Rufus and T-Bear became full-fledged pumpers. Here’s their story.

We were on vacation in Orlando, Florida. Yep, on vacation. Our first “real live family vacation”, as Papa Bear put it. He had found a deal on a suite at a new resort property, we’d driven ten hours or so to get there, and had settled in to our little “home away from home”. Papa Bear had planned out the entire ten-day stint, and had very kindly scheduled in plenty of “down” time for all of us. One day at a “thing”, one day at the resort in the pool. Our rooms had a fully stocked kitchen, so I’d bought groceries and we were enjoying home-cooked meals in addition to frequent eating out at local restaurants. And, because I was on vacation and I could, I started a blog. This blog. The one you’re reading right now. Mostly on a whim, just because I had luscious free time on my hands and I could. Just to see what would happen. Because it seemed like the perfect way to share our “real live family vacation” with friends and family, pix and all, day by day. Great idea, huh? Well, it turned out to be an invaluable life-line during some of the most trying days of our family’s life.

Looking back at this picture, I see the tiredness in T-Bear’s eyes. He’s having a great time, he’s lovin’ the pool and being in a new place and all the great plans we have, but he’s just tired. And, he’d been tired for a couple of weeks. “Growth spurt,” I’d thought. “The onslaught of summer heat and humidity in The South,” I’d thought.

And, we seemed to make more than the usual pit stops on the drive down, because T-Bear had to pee so much, and that continued for our first few days in Orlando. “He’s drinking a lot of water because and it’s hotter here than at home, so, yeah, he’s gotta pee more,” I thought. I even captured a relief break on the way to Kennedy Space Center, because it was “out of the ordinary” enough it caught my attention. It wasn’t until later that I remembered he had wet the bed a couple of times in the week before we left, which NEVER happened.

And, he was thirsty all the time. He’d suck down his drink (usually milk), and be begging for my drink as well. Empty water bottles littered the floorboards of the truck after every outing. There were so many water bottles, BooBoo Bear made a costume out of the labels in the truck on the way to the Space Center. The Night Before, I remember thinking how odd it was that he got up in the middle of the night to get a drink of milk. “T-Bear never gets up in the middle of the night to drink milk at home,” I thought.

Then, he lost his appetite. At The Rainforest Café T-Bear ordered the kids’ Mac & Cheese, a big pile of Mac & Cheese, his favorite food on the entire planet, and he barely touched it. “He’s worn out from all the activity and excitement of the day,” I thought. And I had to escort him to the bathroom twice during dinner. “He really drank a lot today, probably from the heat and activity, no wonder he’s gotta pee so much,” I thought.

Then, he got sick. Really sick. Which never happens. His brothers and the rest of the family can be puking their guts out for hours on end, and T-Bear will throw up once and be done with it. The kid has an iron stomach. So, you’d think I’d be concerned when the kid who never pukes starts puking every hour on the hour. And then, every half hour. And then, every fifteen minutes. All night. But, I’d gotten used to the vomiting routine with BroBear’s Cyclical Vomiting Syndrome, so alarm bells didn’t go off. Until he’d been vomiting all night, and most of the morning, and showed no signs of letting up, no matter what I did. Papa Bear had taken the other two Cubs back to the Space Center that morning, and I called him to come home early. “I think we need to take T-Bear to the ER for IV fluids.” We’d been through this before with his brother. Just plump them up with some fluids, the vomiting stops, and bring ‘em back home to rest.

So, Papa Bear took T-Bear to the local ER while I stayed with his brothers. It must have been a really efficient ER, because within a couple of hours Papa called to tell me that T-Bear had Type 1 Diabetes. All I heard was “diabetes”, and my heart stopped. Diabetes. That’s the disease that kills you very slowly over time. The one where you go blind. The one where you have to chop off parts of your body because you stubbed your toe one day and it never healed and gangrene set in and the only way to prevent it eating up your entire leg was to chop off your entire foot and hope it heals, which it probably doesn’t, and it eventually kills you over a few months. That diabetes. In MY CHILD. I was horrified and terrified.

“They’re going to transfer him to the Children’s Hospital.” “Okay,” I manage to barely squeak because I couldn’t breathe. “I’ll call you when we get settled in.” “Okay,” I squeaked, gasping for breath. I’d gone into another room, away from the boys, and sat there for a few minutes, my hand clasped over my mouth so they wouldn’t hear my strangled sobs. I didn’t want to upset them. I didn’t know what to say to them.

Then, my logical brain kicked in. I grabbed my laptop, Googled “Type 1 Diabetes”, and gave myself a 30 minute crash course on this disease. And then, the soul-strangling guilt kicked in. The symptoms of onset. Every symptom. Right there. T-Bear had had every single symptom, and I didn’t realize this list of symptoms, everything that I had casually noted in my mommy brain but had dismissed as not important, was his little body screaming “Your child is dying.” And I didn’t hear it. I didn’t know. More strangled sobs so I don’t upset his brothers.

Then, my Emergency Mom brain kicked in. Pull yourself together, figure out what needs to be done, and do it. Fall apart later. Armed with my 30-minute crash course, I explained to BroBear and BooBoo Bear that their brother was sick, he was being taken to the hospital where doctors and nurses were going to take care of him, that he had an serious disease, but he was going to be okay. A few days in the hospital, then we’ll take him home.

Papa Bear came back that evening, completely exhausted. I’d already packed a few things, including my laptop, and was ready for my shift at the hospital. Driving there, T-Bear’s nurse called me to let me know the latest. “He’s resting, he’s looking better, he’s responding to treatment, he’s going to be okay.” That was the end of the day, May 13, 2009. I arrived at the hospital, found my little boy, and settled in for the night.

Part Two tomorrow…


  1. You and the family have adjusted well.
    Having something like this to deal with on an hourly basis is tiring and scary.
    BroBear is lucky to have his dedicated mama.

  2. It is so hard to read...such a familiar story.
    what a vacation, and what a sweet nurse to call and tell you everything was going to be ok.

  3. What a heart-wrenching time! I'm so glad I knew the after-story before I read this, and that the pumping has been going so well.

    Lucky there's an Emergency Mum inside us ... a great survival mechanism! I met mine when my son, as a recently brought home premature baby, had pyloric stenosis. It involved a week of projectile vomiting, eventually with blood, a few days of puzzled doctors, then the lightbulb moment of atypical diagnosis and swift surgery. I was more like a nurse in those weeks, putting my feelings mostly aside. My son's recovery was slow, but such a relief!

    It's hard to see the signs when we're so close to our kids all the time ... everything can be attributed to something else, as you were saying. I often wonder what it is that I'm not seeing.

    Hope you're having a good day!

  4. ((((((((((((((((HUGS)))))))))))) for the whole family. You are one special lady and that makes you a special mommy.

  5. That's a doozy of a story. Happy birthday to Rufus. Getting to the 1 year mark is a notable event.