Today, as I write this, it is my daughter Josie’s birthday. Today, she turns 20, and the teenage years are a memory. In the quiet of this morning, as she sleeps in, I have completed all the tasks I needed to do in an attempt to make this day special: I’ve made the trip to Kowalski’s to pick up a couple of the chocolate covered doughnuts that are her absolute favorite guilty breakfast. I’ve carefully wrapped the scant two presents that cannot adequately convey how much I still want to pamper her, and show her just how deeply she is loved, yet that she will appreciate and accept, knowing that the gifts she gets this day are just a token of how her family feels about her. The flowers that will greet her upon awakening are artfully arranged on the table, filling the house with the lovely fragrance of spring and newly blooming vitality – a reflection of the lovely young woman she is becoming. Later there will be other activities including dinner at her favorite restaurant followed by a movie, then back home for a build-your-own sundae extravaganza which was her choice over the traditional cake and ice cream.
I know that most parents think that their child is the absolute best – and they are right – but my daughter has graced my life in ways that I never anticipated, that I never would have dared to believe, and I honestly treasure every day that is left to us before she decides to head out on her own. I will not hurry to that day, even though I know that eventually it will come.
But in this quiet time between task and awakening, I can reflect on what having Josie in my life has meant to me. Perhaps the thing that shines the brightest is how courageous she has been. Josie has had to deal with challenges in her life, and she has struggled, but she has emerged from those struggles stronger and self aware. A few months back, I wrote a piece in celebration of her and of what she has overcome. With your indulgence, I would like to share that essay with you.
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, 7 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 at Children’s Hospital were much more nurturing than at the doctor’s office. We learned how Josie had Type 1 diabetes, where her pancreas was not working, and her body could not 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 at the hospital, we learned that Josie would have to test her blood sugar constantly throughout the day, by pricking her finger and measuring her blood sugar levels. That she would have to compensate for low levels 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 – she would have to inject herself with insulin to compensate for the blood sugar generated in her system, but un-utilized without outside intervention. This condition could not be controlled, could not be reversed, could not be ignored, could not be managed through diet and exercise. It is chronic. It is life threatening. It is for the rest of her life. Every day. Every night. Every meal. And having emergency procedures and treatments in place for the “just in case” that could happen any moment of any day no matter where she is.
Pretty tough for a 12 year old. Not so easy in the years since then, either.
But we also learned that she 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 normal 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 that.) 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, 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 had to deal with it right then… she didn’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, 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 responds immediately and reacts to food, blood sugar levels, etc, and one that she takes once a day that 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 the nights that 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. 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 with her.
So today, March 20, is Be Kind to Josie Day. Has been for the last 7 years. Will be for the rest of her life. It’s the least we can give her, because over those 7 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.
I continue to be proud of her. I am proud of her every day. Not just for what she has had to deal with regarding the diabetes, but also for showing me that sometimes, as a mother, the very best thing I can do is “just be quiet and listen”. For reinforcing that patience does pay off. For demonstrating that being genuine is the best gift you can give to another person. For showing, in so many unique and amazing ways, the courage to remain true to who you are, regardless of what others expect or what society tries to make you. For being Josie.
Most of all, for being my Josie Wren. Happy birthday, sweetie. And a whole host of happy birthdays – whenever they may come – to all those remarkable daughters (and sons!) in our lives.