Missing It

The child of a diabetic mother, my little girl was born big—sugar babies they’re called. Plucked from my belly before 38 weeks for my sake, she already weighed more than nine pounds. But her lungs were small and wet and not ready for the world. My diabetic body had failed her. Despite all my efforts to carry her longer, my body would not hold out long enough to give her the time she needed to thrive. And so, she was swept away from me before I could see her; before I could touch her or kiss her. She was swept away, swaddled, and tucked into a clear plastic box in the dim of the critical care nursery where she could breathe while I was put back together.

For four days, my nine-pound baby girl breathed in that clear plastic box in the dim with the help of tubes and needles and nurses. Other babies born not ready for the world were swaddled, tubed, and tucked into boxes all around her. Though they were not as fleshy as she was. They were not sugar babies, but baby birds, fragile and hoping to feather. Their mothers’ bodies had failed them in other ways apparently.

When I was wheeled down to look at my baby girl or cradle her, I would catch the sideway glances of these mothers. Each warily nestling her own child, so breakable, so hallowed. I sensed they were offended by the soft, plumped cheeks that soothed my need to caress the child I nestled, to love every part of her. I think they felt we had entered their private solemnity uninvited to taunt them with visions of what should have been. I didn’t have the strength to tell them it was merely a hoax. Yet, with the help of tubes and needles and nurses, my little girl’s tiny lungs plumbed liked her cheeks to fill her ribs. When I brought her home seven days after her first struggled breath, she did not fit in newborn clothes.

I penned these words nearly 27 years ago, shortly after my daughter was born. All those years ago, pregnancy for a diabetic was possible, though extremely high risk for mother and child. As soon as my doctor pulled my daughter from my body and handed her over to be rushed away, he told me I should never do this again. My tubes were tied moments later. My pregnancies were not easy, but how grateful I am they were possible. More grateful still that both my children thrived after early entrance into the world, and I prayed from the moment they took their first breath that they would never have to deal with diabetes themselves.

The collective thinking on the role of heredity in type 1 diabetes has swung from one extreme to the other over the years. At the time my children were born, I think the pendulum was in the middle of its arch, at a point of uncertainty. The hunch, however, was that it wasn’t something I should be concerned about. But I had my doubts. Something inside me told me it was simply a matter of time. Yet, with all that I knew and with all my vigilance, I still missed it when everything started to go wrong in my daughter’s body.

For some reason I can’t explain, in my mind, it was my son who was at risk, not my daughter. So, I watched. I waited. And I chased him around with a lancet and glucose meter for years. He hated it but played along nonetheless, for my sake.

They were both in elementary school when I was accepted into the islet cell transplant program. Because of that, we had access to screening tests that were not widely available outside the insulated world of research. Every three months, my son and daughter were hauled down to the hospital for a blood draw. The doctors were looking for antibodies that were the T1D markers. The presence of these proteins didn’t mean onset was absolutely going to happen, but there was reason to watch. Both my children were given the free and clear every time, and I let my guard down.

During these years, my daughter was a dancer—classical ballet. She was at the studio multiple days a week for multiple hours each day. We were aware that eating disorders among ballet dancers even at her age was something to watch out for. So, when she told me all her clothes were too big, that was what went through my mind. Her shoulders were sharp and her body hollow around her pelvic bone. In the fevered pitch of life, this had escaped me, and I wondered how I had missed it.

We watched her carefully over weeks that followed, but she was eating all the time and not excusing herself to go to the bathroom right away—a classic sign of bulimia. So we chalked it up to a growth spurt and fed her all the time. Diabetes never crossed my mind. Not once.

Then one day when I picked her up from school, she looked like a rag doll stumbling out of her classroom. She was in tears and said she was too tired to go to dance. Suddenly, it occurred to me how often this had been happening—for more than a year. But again, I did not even consider diabetes. Instead, one of my sisters is sensitive to slight drops in her blood sugar, and the thought that came to me was, Oh, she must be like my sister. I’ll bet her blood sugar is a bit low. I couldn’t have been more mistaken.

“Her shoulders were sharp and her body hollow around her pelvic bone. In the fevered pitch of life, this had escaped me, and I wondered how I had missed it.”

Luckily, testing my daughter’s blood sugar was simple. I had everything I needed, and I pulled out my meter as soon as we walked in the door. A normal blood sugar reading is between 80 and 100, give or take. A healthy person will start to feel tired or shaky if their blood sugar falls to 70 or 75. This was the number I expected to see. I would give her a snack and all would be well. Instead, the number I saw was 575. I tested again, certain it had been an error. The number was the same. She was exhausted because she was starving, literally. How? What? No!

What followed in the coming days, weeks, months, and years are tales for another day. But in a nutshell, we were fortunate. Again, because of my place in the islet cell program, we had immediate access to the best of everything, something few families facing the same situation have. By 8:00 the next morning, we were being seen at one of the leading diabetes treatment centers in the world. And diabetes was nothing new to us. Even so, the eight hours of training my husband and I sat through that day to keep our daughter alive left us both overwhelmed. I was on the brink of emotional bankruptcy as we walked away and was left wondering how parents cope when they barely understood the diagnosis let alone the care. And the guilt I felt when my body failed her in utero was nothing compared to the weight I carried for passing this along to my child and then not seeing what was happening to her right before my eyes. My greatest consolation was that my own endocrinologist, a doctor well known and much respected in the world of type 1 diabetes, missed it in his own daughter. Maybe none of us sees what we can’t admit is true.

It’s been 17 years since my daughter’s diagnosis, and I couldn’t be prouder of her and how she deals with her health. She went through the typical teenage rebellion that parents of diabetic children must white-knuckle through. But my husband and I always knew that when she decided to own it, she would own it completely. We weren’t wrong. Today, her A1C is consistently lower than mine. I’d be lying if I said I don’t battle with any guilt about her diabetes. Deserved or not, it comes and goes. But she is strong and competent and resilient and confident, and so many other things, many of which she would say are the direct result of living life with diabetes.