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Control Issues
originally posted September 06, 2008
(I told you about my daughter’s diagnosis, our frantic drive to St. Louis, and the first nightin 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.
{ 2 comments… read them below or add one }
I totally get exactly what you are saying. My daughter is 4 now. She was diagnosed a little over a year ago. I taught fourth grade before that. I know a little of how kids can be cruel or make judgements and not know the facts. I now stay home with her and my 3 year old son. She is about to turn 5. Everyone asks about kindergarten and when she will start. I can’t even wrap my head around leaving her somewhere by herself in the care of others. It is a control factor but I want to protect her while I can. She will have years to deal with others later. Now I just want to leave her innocent of this disease and let her not have the worries. The sacrifice of me not working, homeschooling, and giving her a carefree childhood as long as I can is worth it.
I dread that day that you described for your own daughter. I think about it often and how I will respond and how she will respond. I just want to make us both strong enough to let it go. So yes, control big part of this journey but well worth it!! Thanks for your post. It inspires me.
Sports has played a big part in our T1D son’s life, and sports has kept our son from experiencing too much adversity from his peers. He has stayed competitive which shows others that Diabetes is not such a bad thing to have. When it’s time to test, his teammates will call out a number to guess what he tests at and then he high fives the kid who is closest. Even his coaches will high five him for testing and keeping his numbers in range.
I would encourage all T1D kids to participate in sports.