Outreach

Our first month living with diabetes ended with our daughter, Lia, and Franca and I retreating for a weekend to a posh golf resort in the central part of our state. We were there to attend a statewide family outreach event sponsored by the Juvenile Diabetes Research Foundation and we had intended to take Krista too but that did not work out and so it was just the three of us. I say retreat because in the thirty days we had spent acquainting ourselves with this maddening disease it felt as if we were at war. All of us, Krista too. Maybe even especially Krista. We were fighting against food, against the choices of what food there is to feed us, and we were fighting against the essence of food itself, its composition and structure. We were fighting against insulin, a necessary component of life I had not given one single iota of thought to since high school biology class thirty years ago, which had been either compromised and killed or re-engineered into an uncompromising double agent, both friend and foe that acted in Lia’s best interests in one instance and turned quickly against her in the next. And we were fighting against depression, against anger, and acceptance. Against change.

I once read that if you are unhappy with something and you want it to change, you should first try and change yourself. This is the advice I would give my children whenever they approached me with a problem. I would ask: If you don’t like the way things are going, how could you change yourself to make it better. This usually elicited a roll of the eyes or a heavy sigh, not because they didn’t believe it, though they probably didn’t, but because the very idea of change is hard. It scares us and it has allies of its own, things with names like self-preservation, pride, hubris, that work both for and against us.

A day or so after we came home from the hospital, I was standing in the living room talking with Krista, who was laying on the couch. She’d been coughing and combating a sinus infection since before we’d brought Lia home. I asked her how she was feeling and she said to me, Dad?

I said, Yes honey?

What if I have diabetes?

I looked at her. You don’t have diabetes, sweetheart.

But what if I do?

I went over and sat down on the sofa beside her. She looked at me. It’s been a rough couple of days, hasn’t it? I asked.

She nodded.

I think what you have is just a sinus infection, I said.

She looked away. My answer had not satisfied her question and I knew even as I said it that it would not. Krista is twelve and on the verge of her own daunting life-changes. It is an exciting time for her and I feel sorry and helpless for her worry, and for the attention that’s been diverted from her for these past few weeks. Visiting her sister in the hospital, she had seen and heard enough to be wary. She knew how there were no warning signs. How a virus can sometimes trigger the onset. How diabetes was probably programmed in Lia long before she came down with a cold. How could it not possibly be the same for her? For any of us?

At the JDRF retreat we attended over the weekend, both Franca and I participated in TrialNet, an international network of researchers working to prevent, delay and reverse the progression of Type 1 Diabetes. As relatives of someone with type 1, we stand a greater chance of developing the disease and so we both felt that being part of the trial, which involves screening your blood for particular antibodies, was more beneficial than not. Three days later, both Krista and her brother John participated.

Without a cure though it’s just knowledge. But knowledge can turn to action and action to reassurance, which is what I desperately long to give her and Lia, and anyone else facing this horrid disease.

So I leave her on the couch with a hug and her thoughts and this: If it turns out you do get diabetes, I said, we’ll treat it with as much love and care as we’re treating it now.

She nods okay, but I know it’s not good enough. Not for her, not for me, not for anyone else. But at the moment it’s all I’ve got.

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