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A Tribute to My Son's Healthcare Provider

By Karen Hargrave-Nykaza

This month my dLife column is a tribute to my son's diabetes healthcare provider, Kathy. This year she is being honored by our local JDRF chapter, but she has been a hero in our house for many years. I will never forget her patience, compassion, and overwhelming knowledge in those first moments of crisis during our son's diagnosis and every moment since. She was dealing with a scared seven year old who didn't know what was going on, a mother who was hanging on by a thread and whose lifelong fear of needles was about to come to a very abrupt halt, and a father who just wanted to fix it. I have absolutely no doubt that without her as our guide, Joel's life with diabetes would have been much more difficult and far less successful.

She gave us the most important piece of advice I think we've ever received. She said, "This is his disease and he has to learn how to live with it as soon as possible. If you teach him that he is fragile, he will be afraid to live his life. He needs to do things for himself whenever he possibly can." While what she said made perfect sense, it was terrifying to parents who still knew very little themselves about managing the disease. And it was even more frightening when it was time to put his care in the hands of his school. In just a few hours of training, and after starting out with a blood sugar that was so far off the chart that it wouldn't register on the meter, we were taking Joel home to manage it ourselves. Before we left her office, my husband and I had to give each other shots so she could see that we could do it. And when I asked, "Shouldn't he spend this first night in the hospital until he is stable?," she answered, "You can't tell him that his life can be normal and then check him into the hospital."

Her common sense and practical approach to diabetes would see us through many illnesses and even more battles with the school about the things that they felt he shouldn't do independently or couldn't eat. The only person who advocated for my son as much as I did at school to allow him to do everything he was able to do (which was everything), was Kathy. And she had the medical orders to back it up. She has taught Joel how to manage his diabetes and still live a full life. Because of her, he has never let diabetes limit what he can do. In thinking about where he might go to college, only looking at schools close by because of his diabetes is not a factor, as we know it is with some kids his age who think they are not ok if they aren't close to their parents. In considering careers, there are no limits because of his diabetes.

Over the years, she has supported us with advocacy at school and in countless other ways, listened to us endlessly, and guided us through so much. Those first few months were agonizing for us, and I remember numerous after-hours phone calls with her in which she convinced me that I would survive when I really couldn't believe that I would. She convinced me that we wouldn't make a deadly mistake with Joel, which for months was a legitimate fear we had.

When my husband and I wanted to take a vacation years ago, I hesitated because I wasn't sure it was fair to give my mother the responsibility of managing my son's diabetes while we were gone since it wasn't something that she was used to doing every day. I asked Kathy, and of course she told me that we needed to go. That not only would it be good for us, but it would be important for Joel to know that he would be ok even if we weren't there.

If she had never worked with another family, what an enormous difference she has made in our lives. But luckily for those families who live in Central New York, there are hundreds more families like ours who have her knowledge, advocacy, and humor guiding their children through their lives with diabetes. And luckily for those children, because of her diabetes will not define them, but only make them stronger. You rock Kathy!

Read more of Karen Hargrave's columns here.

Disclaimer
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.