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
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]