Pilgrimage

Raising a child with chronic illness to live life without envy.

Without Envy is the blog I started in 2009 to help me work through my young daughter’s diagnosis of Type One Diabetes. A version of this article first appeared there under the title Sweet Jesus, Diabetes for the Holidays.

Late on the night of December 23, 2009, shortly after our eight year old daughter, Lia, had been diagnosed with Type 1 Diabetes, the nurse working the nightshift of the Pediatric Intensive Care Unit came in to check her vitals and IVs. She asked how my wife and I were doing.

We spoke honestly: It was a lot to take in for one afternoon.

The day started out, almost like any other. I say almost because the kids are out of school; we slept later than usual; and our littlest one, Lia, is seemingly slow to recover from both a cold and a busy pre-holiday weekend. The sun is not yet up when she comes downstairs and says she can’t sleep.

Do you want to go lay in our bed?

No, she replies. Can I watch TV on the couch?

So we settle her in on the sofa, feel her forehead and ask is she feeling well. She nods and we head off to the gym.

An hour later, my wife realizes she has missed a call from home. She calls the house and learns from our son, who is home from college, that Lia has thrown up. Franca gives him instructions on cleaning up the mess and making his sister more comfortable and then dials the pediatrician.

At the doctor’s office they do what they’re paid to do and ask lots of questions. A urine test is ordered, then a blood test. A few minutes later the doctor comes in and asks would Lia mind waiting alone a moment while she talks to her mother and father. We follow her down the hall, our hearts trembling.

We found a great deal of sugar in her blood, she says. Normal is less than 140. Hers weighs in at 480. There are ketones in her urine. Something to do with acidosis.

I am quiet. My wife is quiet. We look at one other.

What are these strange words being spoken to us?

Diabetes, the doctor says.

Now I can look at no one. Not my wife. Not the doctor. Not even Lia, who is back in the tiny examination room reading a book and waiting quietly for us to return. Perhaps with some medicine. A little something to make her feel better, less tired.

She has no idea.

Later, at the PICU. The nurse said she knew what we were going through and offered a meaningful smile. She said we’d be just fine. A distant relative had developed diabetes at a similarly young age and since then the boy had taken charge of it; was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out so we took what solace we could from her comment and filed it away under kind, but impractical, advice.

We were hurt. We were too dismayed and unsettled to listen to testimonials about someone who was weeks, months, years down the road in treating diabetes. Such stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to similarly good intentions the next morning, Christmas Day, when the doctor on duty walked in wearing a holiday cartoon tie and wishing everyone a Merry Christmas. I looked at him and hated at once his wit, his casualness, the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

We overcame the shock of course, just as we overcame the heartbreak of poking her with needles, and the fear of letting her out of our sight. There was not much future in holding on to these things, for any of us. We came home and embraced the reality of Type 1 diabetes: carb counting, finger pricks, insulin doses, sugar highs and lows; and we conducted ourselves through the tears and the anguish and held our breath as one pivotal moment in our lives struggled to find routine.

In the days that followed it did, and here we are now, a decade down the road. The tried and true. The tested. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, years behind us now of seeking others to share in their stories and them in ours. Proof that you can take charge of this beast and manage, though perhaps those are too strong of words to use. The truth lies somewhere in the middle, I think, a settlement between freedom and tyranny.

Honestly, though, the words don’t really even matter. What matters is that this is the road we were put on and when that is the case there is no sense trying to understand why. It just is and like any good pilgrimage, the truth is finding peace along the journey.