In this week’s Gimbling in the Wabe, I’m unapologetically revisiting a piece I have posted here before (although I’ve updated it slightly – I am a hopeless tweaker). You see, yesterday was the first day of Spring, but that means something else in my household; it marks the anniversary of my daughter’s diagnosis of Type 1 diabetes. But rather than having it be a somber day, she has grabbed that day and demanded that it be acknowledged; I love how March 20 now demonstrates just how spirited and amazing she is. So here is what is turning out to be my annual “Be Nice to Josie Day” post.
Today is “Be Nice to Josie Day.” For me, it’s not the first day of Spring, or the 20th of March, it’s the day that, 8 years ago, I took my daughter, Josie, into the doctor’s office for what I thought was the lingering flu. She was pasty, and shaky, she had no energy and although she wasn’t running a fever, she just couldn’t seem to get out of bed, let alone go to school. So I took her to the doctor, expecting to get some kind of vitamin or antibiotic or confirmation of “lots of rest, lots of fluids.”
Instead, after a short examination, we got a terse, “It’s the diabetes. Take her straight to Children’s Hospital in St. Paul. Do not stop at home for anything, not a change of clothes, nothing. Go right there. Someone will be waiting for you.”
I had heard of diabetes, but I didn’t know much about it. I thought it was for old people, or fat people – neither of which could be attributed to my daughter. But the message I was getting now was that her life was in imminent danger. I was terrified, but couldn’t show it, for she was terrified, too. And she was only 12.
Luckily the people at the McNeely Center for Endocrinology were much more nurturing than that original doctor. We learned how Josie had Type 1 diabetes, a condition where her pancreas was not working, unable to produce insulin, leaving her body unable to convert the sugar in her blood to energy. She was literally starving, not from lack of food, but from a lack of being able to utilize the food she ate.
In the three days we spent at the hospital, we learned that Josie would have to test the level of glucose – sugar – in her blood constantly throughout the day, by pricking her finger and measuring her blood sugar levels. That she would have to compensate for low levels of glucose in her blood by eating, and for high levels by injecting herself with insulin. With a needle. In her stomach. Every. Time. She. Ate. Anything. That every time she ate – EVERY time she ate, no matter how small – she would have to inject herself with insulin to compensate for the glucose it would generate in her system, but could not be utilized without outside intervention.
We learned that this condition, unlike the more common Type 2 diabetes, could not be controlled, could not be reversed, could not be ignored, and could not be managed through diet and exercise. It was made very clear to us that it is a chronic disease. It is life threatening. It is for the rest of her life. Every day. Every night. No holidays, no time off for good behavior. No chance at reprieve. And it would mean having emergency procedures and treatments in place for the “just in case” that could happen any moment of any day no matter where she might be, because there are so many variables other than eating that can cause a spike or drop in blood sugar, which if ignored could quickly end in seizures, coma, or death.
Pretty tough for a 12 year old. Not so easy in the years since then, either.
But we also learned that Josie could do anything that anyone else could do. That diabetes did not mean her life had to be limited. Yes, she had to take additional precautions, but those precautions would become the norm for her over the years. (Actually, there are two things she cannot do with diabetes: she cannot become a pilot, and she cannot join the military. We can live with those.) Yes, she would have to monitor her blood sugar, and yes, her fingers would become tough and calloused by all the pricks, and yes, she would have to take her insulin with her everywhere she went – even on jaunts to the mall, even to the movies with friends, on the bus heading to school, even when she didn’t plan on eating anything – because she could never know when her body would decide to react to some other stimulus that would cause her blood sugar to spike high or low. And if/when it did, she would have to deal with it right then… she wouldn’t have the luxury of waiting until later. Yes, she would have to wear a medical ID bracelet and go through additional procedures in order to get her license. Yes, by law she would have to test her blood sugar before getting behind the wheel of a car – every single time – and make other plans if her levels were not “in range”.
And yes, she would wake up in the middle of the night in a panic, not remembering if she took her Lantus (she takes 2 types of insulin each day: one that she injects throughout the day, which reacts immediately to food ingested, blood sugar levels, etc, and another that she injects every night at bedtime which is time-released throughout her body in a 24 hour cycle), and knowing if she didn’t she could have compromised her health, but if she did and she took more, that she could put herself into diabetic shock.
Then there are those times when she wakes up in the wee hours of the morning, and has to face the fact that she has an incurable disease that on any given day could kill her, no matter how diligent she is in trying to stave off its effects, no matter how careful she is or how hard she tries to wrest some sort of control over what her body cannot do. What do you say to your daughter when you find her sobbing in the dark, so afraid of dying? I’ve discovered you don’t say anything, really. You just hold her. Tight. You rock her back and forth and shhhhh in her ear and have her take deep breaths until she calms down. And then you tell her that it’s ok, that it will be all right, that she’ll be all right. And you have to believe it, because more than anything, she needs you to believe it for her, with her.
So today, March 20, is Be Nice to Josie Day. Has been for the last 8 years. Will be for the rest of her life. It’s the least we can give her, because over those 8 years, she’s become so strong, so confident, so conscientious. She hasn’t let diabetes dictate her life, but she also hasn’t tried to run away from it. She will live with this, and live well. Maybe, just maybe, they will find a cure in her lifetime – it could happen. New discoveries are occurring every day. But regardless, we will celebrate this day with her. Not just because of what happened on March 20, 2006, but because of everything that has come after. Because she’s my daughter – and I love her, I admire her, and I am so very, very proud of who she has become.