Parenting A Child With Chronic Illness: You Can Get Used to Anything

A diabetes diagnosis changes the path for mom and toddler

When my baby’s life changed forever, she was just a baby. She had learned to walk less than three weeks earlier. She was beginning to “talk” in the baby-speak of young toddlers, the elevated babbles that eager parents turn into words. She pointed, enjoying her new mobile lifestyle, and I labeled.

Flower. Cup. Bird. Baby. She was the baby.

About a month after her first birthday, she began to be irritable. I complained that she had become “high maintenance.” After several days, she began to vomit at odd intervals, many hours apart. She being my third child, I didn’t panic — little kids throw up, after all. Finally she fell into a persistent sleep, breathing faster than normal. And so we discovered this: in a children’s hospital, there is no time.

Her diagnosis: type 1 diabetes. And she, being so little, had gone into a state called ketoacidosis, a serious condition brought on by too much glucose in the blood. It would take days to correct her glucose and allow her body to recover. Time would have to pass. The world became small.

I walked the hospital hallways. The routes couldn’t vary much: once around clockwise. Twice around counter-clockwise. I visited and revisited a sculpture of a resting camel. The animal looked benevolent but clear-eyed, as if to telegraph: you are not the only ones here. Spending days and nights in a children’s hospital pulls one into a shared humanity of the roughest and strongest fiber. On a wall in the cafeteria, artwork by patients was displayed. On one: “My wish is to survive my cancer.” The camel knew. Not everyone exits the inpatient floor of a children’s hospital.

So there were minutes and there were hours. A nurse suggested one morning that we give our little one a ride around the hallways in a wagon. Together we arranged some blankets, and I asked for a pacifier. My baby didn’t use a pacifier then, but I thought maybe she’d like one. Priorities change. I didn’t care about bad habits. In that setting, my mothering was concerned with only the most visceral gains and losses. A parent grasps a hand and murmurs comfort, even to a baby who doesn’t know all the words. Almost done. Over soon. So brave.

When I was a graduate student twenty years ago, I shared an office with Ethan, a tall and soft-spoken man who went on to die of cancer at age 41. In the last months of his life, he wrote a blog to chronicle the experience of “living while dying.” His narrative pairs his daily life as a professor on a small university campus with a medical journey marked by pain and difficult decisions. I’ve remembered one of his sentiments: “Earlier on, I considered my situation to be tragic but now it just seems like my new reality…I didn’t feel the grief or outrage that I might have felt before. I guess it’s true what they say: you can get used to almost anything.”

You can get used to almost anything. There is nothing else one can do. On a clear spring day almost a decade ago, I became the mother of a child with a chronic illness. As the years have passed, I’ve gotten used to checking my child’s glucose monitor all day. I’ve become accustomed to the daily pressure that my kid is the one who can rarely eat without receiving an injection, and that I, with no medical background, must make dosing decisions. I’m now used to nighttime care that has continued years past the expected bed-wetting and bad dreams of early childhood.

When it all began, my existence was directed by my wide-eyed disbelief that any of this was happening. Life doesn’t often progress through such abrupt passages, the before and after distinct, separated by something so pedestrian as a brief stretch of the calendar. Ten days ago, none of this. As the time for our daughter’s discharge from the hospital neared, my husband and I met with a nutritionist to devise a meal plan. We sat outside in a concealed hospital courtyard, clouds overhead. I wanted to stand up and walk away; the templates for this exercise were the wrong ones. How many grams of carbohydrates will my toddler get if she nurses in the early morning beside me in the bed, one round and dimpled arm lazily rising and falling? How many carbs are in one fifth of a banana and two bites of applesauce?

You can get used to anything. There are days when I offer up an exaggerated sigh and comment that the day was an “F-”. There are always numbers, cold and unsympathetic. Whereas so much of parenting trends toward the qualitative, with measures of “success” elusive, the parenting of a diabetic child comes with blunt outcomes. There are actual numbers, real empirical data. My daughter’s blood glucose level is our guide, and keeping it in the desired range is like playing the “Bowler Roller” carnival game over and over. Push too softly and the heavy ball doesn’t make it over a hump. Push too hard and the ball clears the hump, hits the end of the track, and comes rolling back over the hump.

I’m tired of playing this, I cannot say. It’s too hard. As with any chronic illness or disability, we can’t opt out. There is no choosing. But I don’t like Bowler Roller. I don’t even like carnival games.

Finally, there is the role that time plays. In the beginning, my tiny daughter had to drop alone into a boat while I was stopped at the gate on the dock. It was a reality that felt preposterous, she so young that she had not yet learned to say “whee!” while being pushed on a swing. There’s supposed to be a certain order to the universe, with those who are older and more competent taking on the burdens, those same seasoned souls mitigating danger and spreading calm. Parents are meant to be righteous and kick the gates open. A diaper-clad baby in choppy waters is an abdication of a rightful order.

My parenting experience has eased from the early brawl that came from flying blind with a child so young. But my child does not share in this easing. Her burden is not lifting. Although our hard-earned knowledge gained from season after season of disease management might shift the weight to make it easier for her to carry, every year my child’s yoke thickens. As my daughter ages, she does a little more, and I do a little less.

Any of us might look at an innocent young person and steel against the difficulty that looms. There will be trials. The switchbacks are endless. It is a big and dangerous world, but you can get used to anything. My baby was just a baby when this lesson began. And so continue our journeys, hers and mine, both different, both changing with time, neither easy.