Commentary : A Father Picks Up Pieces of His Dreams
Father’s Day, 1987, was a time of exuberance and exhaustion. In the fog of sleeplessness that envelops new parents, Suzanne and I celebrated the arrival of our first child and looked out over a future as sunny as the San Diego climate into which she had been born just a few weeks before.
Proud and confident of the life we would build for Julia, my wife and I allowed our imaginations to roam that landscape. Where would life take her? What would she be like? What changes would come as this tiny being grew to adulthood?
A Father’s Day later, we find ourselves asking very different questions about a very different child, one who now lives with a chronic disease.
On March 19, we awoke during an out-of-town visit to find Julia too weak to raise herself in her crib, whimpering softly in distress. We raced to the emergency room of a nearby children’s hospital, where puzzled doctors and nurses tried to help as our 9-month-old slid closer and closer to unconsciousness.
Finally, a nurse put the clues together and a diagnosis was made: diabetes, the same disease that had killed the grandmother for whom Julia was named.
First recognized in ancient Greece, diabetes results when cells in the body’s pancreas stop producing insulin, the hormone that allows us to convert food into the fuel that we live on. No one is sure of its cause, but experts are beginning to believe that, for some reason, the body turns on itself and destroys the tiny insulin-producing “beta cells” in the pancreas. There are about 1 million juvenile diabetics in this country, but the disease is very rare in a child as young as 9 months.
After the diagnosis, there followed two days of terror. A team of doctors and nurses carefully brought Julia back to health in the intensive care unit, slowly reducing her blood sugar level, which had shot up to five times normal. She had lost 2 1/2 of her 15 pounds in four days, mostly from her body’s desperate attempt to rid itself of sugar by excreting water.
Exhausted, she slept for most of the first 24 hours, her small body hooked to tubes and monitors in the high-tech ward.
We transferred her to San Diego’s Children’s Hospital, where the doctors and nurses suffered the ravings of headstrong, anguished parents. In calmer moments, the nurses gave us a crash course in diabetology.
We learned how to prick our daughter’s tiny fingers and toes to draw drops of blood that four times every day are analyzed for sugar content by a pocket-size machine--a recent and dramatic advance in the care of diabetics. A nutritionist described the strict, special diet that our daughter must live on. We practiced giving her injections by filling syringes with salt water and injecting oranges. We graduated to injecting each other, and in a few days, began giving our daughter her daily dose of life-sustaining insulin.
In five days, we brought her home. Dr. Buzz Kaufman, the hospital’s diabetes specialist, held our hands at first, taking our 6 a.m. phone calls at home and prescribing the day’s insulin dose. Soon, we began to decide on the dosage ourselves.
To say that this kind of life has become routine would be an overstatement. But time is returning a measure of sanity to our home.
Julia, who three months ago roared in fear of the blood tests and injections, now accepts them with only a small grunt of pain. We have joined the local diabetes support group, where the stories of a couple managing three diabetic children make our lives sound like paradise. Two of her teen-agers, far wiser than ourselves from years of living with this disease, baby-sit Julia to allow us an occasional night out.
With some experience under our belts, we are becoming adept at watching for the signs of trouble and intervening before problems develop.
On this day for considering what it means to be a father, I realize that the damage so far is mostly psychic. At some point, all parents understand that they cannot guarantee the course of their children’s lives. It’s just that I have to acknowledge this, at least partly, earlier than most.
Today, my dreams of the future no longer include Bat Mitzvahs and weddings, graduations and grandchildren. My daughter may very well reach those milestones: many diabetics live full, normal, healthy lives.
But some will have their life spans significantly shortened, go blind, develop kidney diseases or atherosclerosis, or have neurological problems, often within 15 or 20 years. Even becoming pregnant can be dangerous for a diabetic.
All diabetics (or their parents) live lives of constant vigilance, striving for the delicate balance of food, insulin and physical activity that other people’s systems achieve automatically.
So for now, we look forward to having a child of 3 or 4 years old who can tell us that she is feeling the first signals of extremely low blood sugar, which can bring on seizures, unconsciousness or death; a child who can begin to understand why her parents jab her with needles first thing every morning.
That’s about as far ahead as I dare look. I much prefer to live in the present, charting the startling improvement in my daughter’s health and behavior since her illness was diagnosed, watching as a plump, laughing 1-year-old figures out how to walk and talk. To look and listen to her, you would have no clue of the disease that has changed our lives so radically.
Occasionally, we do like to take a quick glance at Julia’s future. That’s when we talk about transplant research and other advances that are making a cure for this disease more and more likely all the time. One day, I’m sure that this demon will let down its guard for just a moment, and some smart doctor will step up and crush it.
Then we’ll see about the future.
