It’s that time again. Classrooms around the country are filled with excitement and anticipation for what the year will bring. Teachers dressed in crisp outfits present to eager parents and we all feel the excitement in the air. I’m talking about Back-to-School night.
At our big night, after our lovely new teacher spoke to the attentive parents, she turned to me and asked me to give a brief explanation of my daughter’s circumstances to the group. You see, my daughter has Type 1 diabetes. I had already come in earlier that day to explain her disease and devices to her first grade class. I talked in simple terms about checking blood sugar, needles, and the devices she wears on her body. The children were amazingly receptive and calm during the presentation. So was I.
But here I was, suddenly tongue-tied to share a few sentences about Type 1 diabetes to a group of adults. It seems silly that I would be paralyzed by talking to parents. I had been a teacher and school administrator for years before becoming a mom. I always loved speaking to hundreds of parents and felt very comfortable in the role. But last night felt different. I barely remember what I said. It was something short and upbeat like, “My daughter has Type 1 diabetes. You will see her pump and her continuous glucose monitor inserted on different parts of her body and she has a 1:1 aide with her at all times.” Parents nodded and smiled. That was it. In retrospect, I’m not really sure how or why I kept it short, sweet and free of emotion. I think it’s partly because I never want to be seen as a complainer or a drama queen. It is also likely that I didn’t want to melt into a pool of blubbering tears in front of everyone on their own child’s Back-to-School Night!
If I could do it again, and there were no time constraints, this is what I would have said.
“Every one of us has a story, has challenges, hardships, triumphs, and victories. As we look to a new school year, I’d like to share our story with you.
My daughter, Allie Lou, has Type 1 diabetes. I’m fairly certain the majority of you in this room do not comprehend exactly what that means. I know I had very little understanding of this condition prior to my daughter’s diagnosis. The lack of public understanding of Type 1 can be enormously frustrating for those of us in the Type 1 community. I’d like to share with you tonight what life is like for those of us living with this disease.
When you see me at drop-off in the morning, I may be nursing my coffee as I was most likely up one to four times the night before checking blood glucose levels, changing a pump site or making corrections to her blood sugar. I was either waking Allie Lou to give her glucose to bring her blood sugar back up or I was giving her insulin to bring her blood sugar back down. She has had very few nights of uninterrupted sleep since she was three years old—which in itself is enormously disruptive to a child’s emotional and physical health.
I will see many of you at our children’s birthday parties where we will be mingling. If I seem disengaged, I am not being rude. In actuality, I am preoccupied with the foods being served, her numbers spiking or dropping from the excitement and activity, and trying to keep a calm and cheerful demeanor so my daughter won’t see that these parties cause me a tremendous amount of stress.
Your child may tell you that Allie Lou is lucky to get to leave school early on occasion. In fact, Allie Lou is on her way to see her endocrinologist for her a1c check and/or blood draw. This will happen every three months for the rest of her life. At this appointment, the doctor takes a blood sample to check Allie Lou’s latest a1c- her average daily blood sugar. I still feel like a school girl going into these appointments. I am hoping to make the grade. No matter what the grade, we keep moving forward knowing we will have the same test in three months.
If you see me texting on my phone during PTA meetings or at the park, I can assure you I am not updating my Facebook page or checking Pinterest. I am most likely checking her blood sugar remotely and texting my husband or her one-on-one aide about how to manage her current blood glucose number.
If your child comes over for a play date, they are likely to see medical supplies in our home. The syringes, test strips, alcohol swabs and pump supplies your child may see in our kitchen cupboards were never supposed to be there. If your child opens our fridge, they will see insulin chilling in the butter compartment. These are all part of the arsenal required to keep Allie Lou alive. Likewise, if we go to your house for a play date, all of those supplies will be coming along with us in her diabetes kit. I accompany Allie Lou on play dates not because I’m a “helicopter parent,” but because I need to be there to monitor and treat her. In time, I may feel comfortable enough to train you on her devices and teach you to administer life-saving glucagon in case of a severe low.
You see, Type 1 diabetes is a chronic, life-threatening, autoimmune disease in which a person’s pancreas stops producing insulin. Insulin is a hormone made by the pancreas that allows your body to use sugar (glucose) from carbohydrates in the food that you eat for energy or to store glucose for future use.
Type 1 is often misunderstood and therefore marginalized. It cannot be prevented and there is no cure. There is nothing that we or our daughter did that caused her to get it. I am NOT talking about the more publicized and often preventable “Diabetes” you see in diet magazines, documentaries about poor eating habits, or slick public service announcements. Those usual sources of information are referring to Type 2 diabetes, an entirely different condition with its own unique causes and treatments.
People with Type 1 cannot make insulin because the beta cells in their pancreas are damaged or destroyed. They will need insulin injections to stay alive for the rest of their lives and need to account for the carbohydrates in literally every morsel of food they eat. While insulin keeps people with Type 1 alive, it is also a dangerous drug and one small miscalculation can be deadly. Accidentally overdosing insulin can happen to even the most conscientious people. Type 1 diabetes strikes children (and less often adults) which is why it used to be called “Juvenile Diabetes.” The name was changed to Type 1 diabetes because people who get the disease as a child become adults (or for those adults who are diagnosed later in life) and “juvenile” became confusing for adults to explain.
Some people may have the impression that Type 1 diabetes is easily managed. In actuality, Type 1 is a physical and emotional marathon that never has a finish line. Matching insulin with carbohydrates is not a simple equation. Some days we have stable blood sugars all day and we feel like we have finally “cracked the code.” Yet, sure enough, we can do the exact same thing the very next day and it doesn’t work. There is a new code to crack every day. Our life is punctuated by low blood sugar, high blood sugar, and the constant thrum of striving to keep my growing child’s blood sugar in a safe and healthy range all day and all night. Everything affects blood sugar: food, stress, sleep, activity level, growth, illness, even the weather—to name a few variables. Our family eats a whole-foods diet rich in vegetables and protein with limited refined foods. This clean diet absolutely helps us in our daily attempt to achieve “in range” blood sugar, yet each day still poses a challenge. When Allie Lou is out of her target blood sugar range, her organs suffer and her whole body is in distress. Heart damage, neuropathy, kidney damage, blindness, risk for limb amputation and death are a few of the possible complications associated with Type 1 diabetes.
When my mind is not buzzing with blood sugar numbers, carbohydrate calculations and insulin dosing, I spend much of my time on the phone dealing with insurance companies, preparing her supplies, scheduling appointments, and researching the disease.
You will notice my daughter has an insulin pump. Many people assume this is some magical solution for managing diabetes. It isn’t. It is a great tool but it does not do the work of a functioning pancreas. It is simply another way to administer life-saving insulin. Since her diagnosis nearly three years ago, my daughter has received well over 6,000 shots. Yes, you read that right. Now that she is on the pump she still gets a new insertion (equivalent to a shot) once every two days and a CGM insertion every week. So while that is way down to around 400 insertions/injections a year, it’s still no picnic. I should also mention that in addition to the insertions, Allie Lou gets over 2,900 finger pricks per year to check her blood sugar.
Allie Lou will not outgrow her disease. Until there is a cure, it is here to stay. At her young age, her continued health and safety are 100% dependent upon those who care for her—primarily us, her parents. I still cannot quite wrap my head around the fact that Allie Lou will carry this hourly burden for the rest of her life and she will literally never have a break from this disease.
We are eternally grateful to Dr. Banting and Dr. Best for their discovery of insulin in 1921. Because of them, Allie Lou is able to live a full and productive life. I am blessed to have an amazingly supportive husband and a rambunctious four-year-old boy. I am fortunate that Allie Lou has an incredible endocrinologist and that we benefit from all of the technical advancements. And I am privileged to have you: this community of supportive parents and outstanding teachers.
I recently read a quote about how if we all threw our problems into a pile to give away, many of us would end up scrambling to get our own problems back once we saw what everyone else was dealing with. While Type 1 diabetes is like treading water 24/7, I know there are far worse plights on this planet. Although I wish we could erase it from our life, I see the silver lining in all of this. It has forced me to find deeper meaning in my life and pushed me to become stronger and more compassionate than I knew possible. I cannot help but think that Allie Lou’s resiliency, courage and tender heart are partially credited to this disease.
I believe that we all yearn to be understood which is why I shared our story with you tonight. It is my sincere hope that as the school year progresses, we can all begin to share and entrust each other with our own personal stories of struggle. When we see each other running late for school functions or looking less than picture-perfect, try to remember that each one of us is managing something that others may know nothing about. Let’s turn to each other for support, compassion and understanding. And, of course, let’s celebrate ourselves and our children!
Now, back to your regularly scheduled Back-to-School-Night programming.”
Sara Williams-Curran is the co-founder of Leaf & Love Organic Lemonade. Sara co-created the only organic, zero-sugar juice box after her daughter was diagnosed with Type 1 diabetes. She lives with her husband, Matt, and two children in the Bay Area. www.leafandlove.com