November 14 is World Diabetes Day, and it has given me a lot to think about. This is my first year actively observing this day of global awareness because 2016 is my family’s first year with Type 1 Diabetes.
January 12 of this year I took my then-6 year old daughter to the doctor for what I thought was a simple UTI. She had been urinating a lot and even wetting the bed. She had also quickly lost weight over the previous few months, but I thought nothing of it. I was happy to see her slimming up. Little did I know that these 2 symptoms along with her increased thirst are the most common early symptoms of T1D.
T1D wasn’t really on my radar. I didn’t know of any relatives with it, I didn’t know any T1 people well enough to recognize it, and there was nothing I could have done to prevent it. However, I will never forget the moment that my daughter’s pediatrician told me that I needed to take her to the hospital because of the amount of sugar in her urine. It was shocking. Time slowed down but my heart was beating so fast. My mothering instinct took over and I graciously (of all things) accepted the news and focused on the action I needed to take. But in an instant our lives changed. I was both calm and panicked. Externally I was focused. Internally I was afraid of the unknown. I worked hard to maintain my composure throughout our 3 day hospital stay. I actively involved myself in my daughter’s care as soon as they would allow me to do it myself. but I began to slowly deflate in short burst of big emotion. The next few months were tough, and the last few have continued to be challenging, but we are still focused on the necessary action we must regularly take to maintain control of my daughter’s body.
Despite all this, I have gained some important things this year as a result of my daughter’s T1D: understanding, perspective, and admiration.
Not only have I gained knowledge concerning T1D and disability accommodations, I have also gained a greater understanding of the importance of accessibility. My daughter loses out on little things because of T1D. When kids in her class bring in cupcakes to celebrate a birthday, Ada gets left out unless I am given prior notice to provide her with an alternative snack without carbohydrates. This discourages her as she feels frustrated when T1D stands in the way of her joining in the fun of her peers. And this is quite minor compared to some of the real inaccessibilities that may differently abled people face. I spend more time trying to imagine how disheartening problems of accessibility are for some.
Similarly, as my daughter has struggled with both generalized and separation anxiety since her T1D diagnosis, I have gained a greater understanding of the importance of dynamic support for people who suffer from physical disabilities or ailments. When your body is warring against itself or is not functioning fully, it takes a toll. My daughter struggles with heightened emotions and fears all because of her non functioning pancreas and all of the stuff we have to do at least 5 times a day to make up for it. I don’t get what it is like, but I do understand that it isn’t easy and that I must listen to my daughter and others to better provide equal opportunities for access and success to people of all physical abilities.
My perspective has definitely shifted over the last year. Certain issues in my life seem far less important–even my depression seems less important, although I am no less vigilant about keeping it in check–than they did before my daughter’s T1D diagnosis. I spend my time and money differently, and old rules have been replaced by new routines. For example, when my daughter is out of control emotionally, I cannot immediately discipline her; she could be high or low, or dropping or rising. Or it could be anxiety rather than misbehavior or direct disobedience. I see her as a more complex being because her complexities are more recognizably in flux than the average child. I think more about my interactions with her and what I say and do with her as a result.
I also think about how fortunate I am to have been healthy for my entire childhood. Childhood illness is rough. My daughter’s body and brain are still developing and the responsibilities and pressures of chronic illness seem too heavy for a child to bear. But at the same time, her illness is manageable. It has yet to be cured, but we can manage it. What a blessing this is! This diagnosis is not a death sentence or a even a roadblock. It will not stop her; it will not permanently slow her down. it will teach her and hopefully make her a more understanding and empathetic person. For all the lessons depression has taught me over the last 15 years, my daughter has even more time to grow and bloom into something beautifully reflective of her unique perspective.
I have always loved my daughter and admired her free spirit, but I now admire her tenacity, too. She faces T1D with grace and positivity. She willingly submits to each shot and each finger prick. She reminds me to check her ketones when I forget. She comforts me if I feel guilty for giving her a shot that hurts. She ignores the tiny bruises on her stomach, arms, and legs. She laughs and sings and plays and dances and happily adheres to the rules concerning when and what she can eat even when her friends are eating as they please. She even recently offered her friends some of her halloween candy even though she couldn’t eat any at the time. She sees T1D as her reality without judging it. She accepts her body as is and takes its care seriously.
Above all, I admire her joy. She is the happiest kid at times, and she rarely gets down about her T1D. Her anxiety sometimes makes it hard for her to remember, but she certainly tries, and she always bounces back.
On this, my first real observance of World Diabetes Day, I am grateful for two things. First, I am grateful for Ada’s life and health. Some T1D people are not diagnosed in time to be saved. Some T1D people do not live in a place where they can access the life-saving medicine and equipment required to manage T1D. This is a life-threatening condition, and yet, despite the time and cost, I am so grateful that I can keep her healthy. Second, I am grateful for another chance to hopefully become a better human being and world citizen. In such a divisive time in the USA, I feel so grateful for this personal opportunity to learn and grow into a more empathetic person. If I could give Ada a functioning pancreas, I would. But since I cannot, I will be grateful for what I have in exchange.