My son was diagnosed with type 1 diabetes two Septembers ago. Our story’s probably a lot like other ones you hear: there was a frantic trip to a hospital, a period of shock—He has what?—followed by the anger, then mourning that comes with realizing your child is completely dependent on a drug for survival and will forever cope with a condition that requires round-the-clock maintenance—maintenance that comes with never-ending ups and downs.
My husband and I circled the wagons, retreated into our own scary, complicated world of carb counting, needles and sleepless nights. I cried. Most of my friends, though well meaning, didn’t understand (He’ll stabilize, right? At least it’s not cancer). I look back at the compassion we were surrounded with and wish I could have better articulated that we were grateful, but we just needed time, that we’d rely on that love and support for, um, forever. But when you’re so stunned at how your life—I mean, the way you live your life, how you expect things to go—can change so dramatically after a quick trip to the pediatrician, well … you’re busy metabolizing your new scene and the gravity of it all.
But now, as the days fall away, I can tell my friends that leaving the hospital was kind of like bringing home my first newborn, but without the instincts to help him survive. This time that stuff had to be taught, studied, practiced—there was a learning curve. At the hospital (what I call our three-day “diabetes boot camp”) I recall giving myself finger sticks and shots, injecting expired glucagon into oranges, taking carb quizzes and math tests. (I should also mention that my son took all of this like a champ: even then he was a precocious little guy who immediately knew a protein from a carb, who, from the start, would bravely present his backside for a post-meal shot.) When my husband and I sufficiently passed our tests we were released, and permitted to bring our son home. In a word? Terrifying. But we did it.
And we’re still doing it. Things are okay. Our normal is our normal. And now I have something important to share, particularly with those D-Moms and D-Dads who are at that panicked “circle the wagon” stage. Here goes.
My son turned seven today.
Even though there was no school, he awoke early, opened presents from his sister, Dad and me, and checked himself in the mirror several times to report, he told me, what he looked like as a seven-year-old. (In his words, “The same, but different.”) He and his little sister built an enormous blanket fort that they filled with pillows and toys, with a strategic entrance facing a wall so they’d know if someone—Mommy—was coming. There were cartoons, followed by a trip to the outdoor ice rink—a flooded and groomed baseball diamond—two hamlets away from ours. While we were there the wind whipped, making the single-digit temperature feel dangerous, numbing faces and toes, but we skated on, my daughter shuffling from one corner of the rink to the other, my son sprinting round and round, hockey stick in front of him. We came home, thawed fingers and toes and drank hot chocolate. The kids watched cartoons, then we climbed into the car and set off for a nearby town, where my husband and I threw our son a party at a pizza parlor. A dozen kids came, mostly seven-year-olds, running wild in their pirate hats and eye patches, gobbling pizza and opening their mouths to exhibit partially chewed food. They laughed, hugged, jumped, chased, tackled. It was chaos, particularly after the giant cupcakes.
We drove home through snow, my son on a high from the fun, recounting the gifts he had just opened: LEGOs, a slime kit, pirate tattoos, superhero books, Harry Potter wand, toy helicopter, a snake that grows when you put it in water. At home we inspected the bounty, my son started building one of his new LEGO sets, then we brushed teeth and read a book. The kids were kissed, snuggled, tucked. Exhausted, they quickly fell asleep. I watched my son for a while—my little guy, not quite as little as before.
It was a beautiful day.
Throughout it all were finger sticks, carb counting, insulin injections, an insulin pump set change, a couple of hypoglycemias and a couple of hyperglycemias. Those are just things we do, stuff we deal with, part of life. Are some days harder than others? Do I worry much of the time and wish to the moon and back that my son didn’t have type 1 diabetes? Sure, but there’s more light than dark, more hope than fear. And that’s something.
Exactly what ifeel for my 5 years old child wishing that he had no diabetes only wish ihave in life
I like the “more light than darkness”. I try to make my son’s life as full as possible while fighting for that cure. As long as we show both sides of the disease, the light & the dark, I think we’ll start getting the public support we need for cure funding.
Thank you! It is “the same but different.”
Beautifully captured the type of “normal” we have with T1 in our lives. Thank you!
@Shelley You are wise to take the reading and researching in stride at the beginning. This article was wonderful! Also try reading Meri at Our Diabetic Life and LeighAnn at D-Mom Blog.
Beautiful article. Our 10 yr old daughter was diagnosed 2 weeks ago. I intentionally did very little research and blog-reading last week (despite my nature) because I knew it would terrify me, even more than I already am. I am so glad to have found your blog and I am so relieved to hear there is more light than dark. We feel very dark right now with glimpses of light but are staying as possitive as possible. If one more person says to me, “well at least it’s not cancer,” or “at least it’s controllable,” I might have to hit… Read more »
I love your statement as this is no story this is real. Our son was 2 when diagnoised hes now 8 snd still not controlled even though on a pump. Ill keep this short im a shithouse when it cones to this my wife does it all i do my bit but not enough im trying to step up to the mark but i dont find it easy. Dont get me wrong ive done marathons and stuff for jdrf but at home its easy to make excuses i dont know ?
This was a wonderful article. My daughter was diagnosed with type 1 diablo at the age of 7 months old and now she is 20 years old. Bringing her home at 7 months old only a baby it was difficult. I didn’t understand how can my baby become a diabetic at such a young age, but as the years went by things got easier. It part of her life and I had to except it..
Yes! So normal.
Happy birthday!
Great story. Type 1 diabetic for nearly 30 years. No chance at cupcakes back then…only angel food cake, if I was lucky. So thankful for the advances and understanding that allows for this new “normal.” Hang in there.