Just My Type: Putting Up a Fight

Putting up a Fight

Having a marital spat in the middle of a chain department store is not my idea of fun. Yet there my husband and I were, 7-year-old Noelle in tow, marching through the store, hissing at each other in a not-so-very-nice fashion. – It’s just one more way that diabetes brings out the worst in us.

You see, it wasn’t just a run-of-the-mill dispute. No, this fight was about a fundamental difference of opinion regarding the care of our daughter’s type 1 diabetes.

How can two relatively intelligent people who both love and cherish their daughter be so far apart? It’s truly mind-boggling. When Noelle was first diagnosed in 2010, a friend whose child has autism warned me what issues like that can do to a marriage. He was right. Nothing has been run-of-the-mill since.  Read the rest of this entry »

Just My Type: Depending on Alarm Clocks

No Cause for Alarm

A year ago I won an alarm clock in a church raffle.

I know … exciting, right?

It actually was. It was a very cool alarm clock. It was shaped like an egg, flashed different colors and had many features like a timer, date and temperature. My daughter, Noelle,picked it out from a pile of items we could choose from in the raffle.

She knows how much her dad and I depend on alarm clocks.

You see, since she was diagnosed with type 1 diabetes, alarm clocks are literally our lifelines. Every night, we get up at least once in the middle of the night to check her blood glucose levels. On a good night, we only have to get up once. On a bad night … well, sleep is a luxury we just can’t afford.

Nighttime is a very dangerous time for kids with type 1 diabetes. Blood glucose levels can drop dangerously, and most kids, especially young and relatively newly diagnosed kids, don’t wake up when that happens. So many type 1 parents chose to test during the night to make sure their kids stay safe.

That has been our reality since the diagnosis came two and a half years ago. It’s like having an infant again and never getting a full night’s sleep. It makes for perpetually tired parents. It’s not natural for people to wake up in the middle of the night every night.
Hence the need for the alarm clocks.

We have three in our bedroom. One is the main clock, set to whatever time we need to get up in the morning. The second is a nice  travel alarm clock I bought for my husband a few years ago; that one sits on his nightstand. The third, of course, is the egg, which sits on my nightstand. The travel and egg clocks are set to go off within a few minutes of each other. Why? So if we sleep through one the second one will wake us up. So if we forget to set one the other will still go off. So if the batteries die in one the other will still go off.

The system is not foolproof. Sometimes one clock does not go off. Sometimes neither clock goes off. And sometimes we don’t get up no matter what.

Last week, the night before Valentine’s Day, Noelle had an up-and-down evening, rebounding from a pre-dinner low to pre-bedtime high. I gave her a little “bolus,” half a unit of insulin through her insulin pump, before I went to bed and asked my husband, who was up late working, to check her an hour later before he went to bed. He did and she was fine.

At 2 a.m. the travel alarm clock went off, and my husband got up and did the test. In my sleepy haze I heard him go running downstairs. I knew what that meant: Noelle was low and he was getting the maple syrup, which is how we treat middle-of-the-night blood sugar lows. I dragged myself out of bed to help him pour the syrup down her throat. “My alarm is set for 3 a.m.; I’ll get up to re-test,” I mumbled as we both fell back into bed.

The next time I opened by eyes it was 6:11 a.m. Read the rest of this entry »

“Special Treatment” for Children with Disabilities

Special Treatment

I would gladly stand in the longest line Disney World could ever throw at me, and smile the whole time, if I could take diabetes away from my little girl.

Those words mean different things to different people. Raising a child with a serious disease, I’ve come to embrace everything that’s positive about these two words.

That puts me at odds with lots of people, including with my own husband, who never wants our daughter to feel “different” because she has diabetes — even though she is.

The issue first came up the summer after my daughter Noelle was diagnosed, when we accepted an invitation to the amusement park for the day. I panicked at this new challenge and hit the Internet to see what other parents of type 1 kids do in the same situation. It turned out that many amusement parks offer special passes for people with a whole range of disabilities that basically allowed them to skip some of the longer lines. The theory was that blood sugar levels can go haywire while waiting in the heat in a long line.

It made sense to me, and as the parent accompanying her, I was thrilled at suddenly having something that might make the day go more smoothly. But my husband was appalled: How could I accept a pass that would announce that our daughter had a disability? Since when was diabetes was disability?

Our internal family dispute was mirrored by the blog chatter. Some type 1 parents would not dream of accepting a pass that would bump them to the front of a roller coaster line simply because of diabetes. Other type 1 parents whose children were affected by heat and long waits were relieved to have those passes. Some used them freely. Others used them only as needed. The discussions went round and round: Is diabetes serious enough for diabetics to be given “special treatment?”

Since that first summer, I have faced the same battle many times. Some of those battles were entirely of my own making: I was irritated when the principal of my daughter’s school would not let me in the building five minutes early to see the nurse, because I wanted “special treatment” that parents of healthy children didn’t get. Some of those battles were the product of other people’s imaginations: One parent at karate was so sure the instructor had slipped my daughter through a belt test because he felt bad for her that they actually challenged my daughter, passive-aggressively accusing the first-grader of “special treatment.” And some have to do with what’s legal and ethical: Should a child with diabetes have a 504 disability plan at school when it will potentially give them “special treatment” like taking a break in the middle of a standardized test?

I gritted my teeth over being denied early entry to school but let it go. I avoid the karate parent whenever possible. And I went ahead and pushed for the 504 just in case.

But after that first amusement park trip, where the special pass made my daughter very popular with her friends when they were able to skip a few lines (but not the one for the water ride that really worried me, the one where we could not bring any items like her blood glucose kit with us in an hour-plus-long line; we were forced to miss that ride), I never asked for the pass again – and now my family has season passes and we go all the time and it’s no big deal. And even though I researched the policies when we planned a trip to Disney World over this past Christmas break, I opted against even asking for that “special treatment.”

That’s not because I don’t believe in the idea of the passes; I wholeheartedly do. I just found that the heat and length of the lines at the amusement parks didn’t affect my daughter in any kind of negative way, so I didn’t need them. And that’s what I embrace about the concept of “special treatment”: I love that there are times, really really important times, that people are going to give my daughter a break because she lives with his devastating, life-altering disease. She IS different because of her diabetes, and I accept that. It doesn’t define her, but it is part of who she is now.

And this is what I say to people who fault this “special treatment”: I would gladly stand in the longest line Disney World could ever throw at me, and smile the whole time, if I could take diabetes away from my little girl.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

[Photo credit: (ccl) Brett Kiger]

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