Control Issues

by Leighann on September 6, 2008

(I told you about my daughter’s diagnosis, our frantic drive to St. Louis, and the first night in the hospital. I was going to continue the story, eventually bringing you to the present. But today something we have feared happened.)

My husband and daughter and a friend and his eight-year-old son went to the ball game together. When they all piled into the truck together, my daughter announced proudly that she has diabetes. She has been making this announcement both to those we know and to total strangers. The fact that she is diabetic is becoming part of her identity. It is not something that she should hide or be shameful of. She asked me recently if kids with diabetes can have Halloween (her favorite holiday). I told her of course she can have Halloween. She said she didn’t think kids with diabetes are supposed to go trick-or-treating. I told her of course she could go trick-or-treating, but that she could only have a little bit of candy at a time. (In all actuality, we have never let her indulge in mass quantities of sweets. Just last week I found a container of last year’s haul that I had put up in a cabinet and we totally forgot about it.) The other day she asked if she would still have diabetes at Christmas. I told her that she will always have diabetes and it is just part of who she is now.

She has pondered “Remember when I didn’t have diabetes and I could eat whenever I wanted?” “Remember when I could eat anything?”

She asks why she has diabetes and I tell her that her pancreas just isn’t working like it should and she can’t get energy from her food without her insulin.

And she accepts it. She accepts all of it. She accepts four finger pricks a day, four injections, three regimented meals and two snacks, and nothing in between. She accepts it.

But not everyone accepts her.

When she tells some strangers, they say the stupidest things to her. They are condescending. They are ignorant. Because they are uncomfortable they try to change the subject.

Occasionally she strikes up a conversation that leaves a lasting impression on all. Like at the library a week or two ago. It was snack time so we sat in the cafe and the kids ate. When she finished she went to an older couple at the next table.

I was cleaning up the baby and trying to wipe off the smeared cheese from the library’s new cafe seating. When I finally went over to ask her if she was ready to go in and pick out some books, it turned out that she was having a very lengthy conversation with this couple about diabetes. The gentleman had recently been diagnosed with Type 2. And these two, my four-year-old and this septuagenarian, were bonding over glucose monitoring and injections.

This couple told me that they were so impressed with her for being able to verbalize about it at such a young age.

So today when she announced matter-of-factly to their companions that she has diabetes, it was nothing unusual for her. But what followed is heart breaking.

She’s only four. I want to protect her. I want to preserve her innocence as much as I can given the circumstances. I want to delay and postpone the cruelty of children.

When they arrived at the stadium and emerged from the truck, my daughter grabbed the boy’s hand. She asked him if they could hold hands and walk together. She loves sporting events and I think she was thrilled to be there and wanted to share her excitement.

But instead of walking with her, he yanked his hand away and said, “I’m not holding your hand. I don’t want to catch your disease.”

His father did not see or hear this exchange. My husband knelt down to eye level and told him that it is not a disease and diabetes is not something you catch and it is not nice to say such things.

I think my husband was crushed that such a thing was said to his precious, innocent daughter.

I hope that she doesn’t think twice about it. I hope it has already been erased from her mind. I imagine that it was more hurtful to my husband than to her because she probably doesn’t know what disease means. We don’t use that word because she doesn’t have a disease. Diabetes is a condition.

She has her whole life to overcome adversity, I just wish it didn’t have to start at four.

We can do our best to control her diabetes, but we can’t control how others will act toward her.

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{ 3 comments… read them below or add one }

1 Cara January 25, 2010 at 10:52 am

Though it was 24 years ago, I was diagnosed at 4 also. I don’t remember too much about that time in my life, but I can’t begin to imagine what my parents went through. If anyone ever said anything to me like that little boy said to your daughter, I don’t remember it. So just know that her age will her wipe the bad parts from her mind.

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2 Michael Hoskins January 25, 2010 at 11:45 am

That is heart-breaking. Like Cara, I was diagnosed many years ago (nearly 26) at the age of 5, and don’t recall much of life before my diagnosis diabetes. But I’ve never had to personally endure what a parent goes through in having a child with diabetes – just can’t imagine that. My D-Mom (diagnosed herself at age 5) dealt with this for years when I entered elementary school, as I was the only diabetic child at the time. She battled these issues, and only since my adult-hood have I been able to realize what she went through. Kids are just so cruel, even outside of diabetes. You’re absolutely right about describing this as a condition, not a “disease” as we often understand the word. Your point impacts my thinking about diabetes as it relates to education and description to the outside non-diabetic world, particularly to children, who might not know any better. While “disease” might technically be accurate, the connotation is incredibly powerful and can wrongly be used to crush the needed hope. Thank you for sharing this insight, though I am so sorry to have to read about it. I trust your daughter will go on to such an incredibly productive life of whatever she wants to make of it, and I look to everyone in the Diabetes Online Community as well as my own mom, who’s managed her diabetes for 50+ years and is doing well by all worthwhile accounts. Thank you for giving her that hope and inspiration, despite all those in the world who might unfairly, unjustly, and ignorantly try to knock her down.

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3 Julia S January 27, 2010 at 9:15 pm

I can so relate with this. My 7 1/2 year old son was diagnoised at 3.
I hate hearing the words “sickness and disease” also. He is very open about having type 1. Now sadly he is experiencing the evils of childhood. He is now getting picked on because he has diabetes. Now he is coming home depressed and doesn’t want to go to school because of it. Our very small support group keeps trying to tell him to shrug it off. That he is not different and he can still do anything that he wants to in life. I just wish there were some people around the Lansing, Il area to get together with for him to meet other kids going through the same thing.

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