My daughter came into this world fighting on June 15, 2003. She was born five weeks early and because of that, her lungs were not fully developed. She spent the first two weeks of her life in the NICU connected to tubes and wires that supplied her with oxygen and nutrition. My heart was breaking as I watched her lay in a dome covered bassinet, knowing I couldn’t hold or touch her. When I asked if she was going to make it, I was told by the doctors that it was in God’s hands. So I prayed! And fortunately, my prayers were answered. She was born a fighter and to the amazement of all the NICU doctors and nurses, was soon able to come home.
As soon as Alyssa could move, she followed her two older brothers around. She wanted to be with them, do what they did, and be just like them. One time, at the age of two, she pulled off her shirt wanting to join in with their basketball game. I had to remind her that she was a little girl. Although she had a bumpy start to her life, she was a healthy, beautiful, rough, and tough little girl.
In late October of 2010, my seven year old daughter started wetting the bed. I honestly thought it was just a stage she was going through. In all reality, this girl always played hard and crashed with exhaustion at the end of the day; therefore, I assumed she was just tired and sleeping through the need to go. She also started to look thinner, but I thought it was because she was getting taller. She was already petite, but she seemed to be losing her full, baby cheeks. In early December, I started to notice Alyssa's appetite had decreased; but, she always seemed to be thirsty. By Christmas, Alyssa was drinking anything she could get her hands on. Two days after Christmas, I took her to her to see the pediatrician. It all happened so fast and that was the first time I heard the words Juvenile Diabetes.
In the emergency room, Alyssa’s eyes filled with tears as she asked me, “Mommy, do I have to sleep here?” It was a painful question to answer. She was terrified and confused and I felt helpless. I would’ve taken this from her if I could.
Alyssa was admitted into UNC Children’s Hospital and honestly the next four days are all a blur. Her father and I were bombarded with information on diet and nutrition, blood glucose levels, meters and insulin injections. We spoke to countless doctors, nurses, nutritionists, and diabetes counselors. We were given stacks of pamphlets, brochures, and diabetes cookbooks. I felt as if I was in a whirlwind. I wasn’t sure if I could handle this situation.
Juvenile Diabetes, also known as Type 1 Diabetes, is a disease that generally affects children and is normally onset at a very young age. It’s a condition in which the pancreas no longer produces any or very much insulin, a hormone that allows glucose to enter the cells and produce energy needed to survive. More than 15,000 children are diagnosed with type 1 diabetes a year. Unlike type 2 diabetes, there is no known cause and there is no cure.
As parents, it is our job to protect our kids from any harm. How could I do this when she was going to have to take four injections of insulin a day and have her fingers pricked six or more times a day? Everything she eats will have to be measured and calculated. She would have the potential of heart and kidney disease, amputations, blindness, and early death.
Both I and my husband chose to stay in the hospital with Alyssa. On our way up to her room, we passed other children’s rooms that were all decorated for Christmas. On one of the doors was a sign that read, all I want for Christmas is to go home. I couldn’t help but look into the room and it was apparent, at two days after Christmas, that this poor little boy’s Christmas wish didn’t come true.
After Alyssa drifted off to sleep that night, my husband and I sat on the cot processing the day’s events. It was as if we were reading the other’s minds. We both saw the little boy and we both read the sign on his door, and we both said at the same time, “This could be worse.” Our child had a disease that was manageable, although it wasn’t going to be easy, she could live with it. And she was going to come home. There were so many children in that hospital that would never see their homes again.
While we were in the hospital, Alyssa was given a little blue back pack that had a few things to help her adjust to her new life with type 1 diabetes. It was called the Bag of Hope and inside was a children’s book with stories about a bear that had diabetes. Also inside was Rufus the bear, a cuddly brown, stuffed animal that also had type 1 diabetes and was the main character in the book. He was wearing a medical alert bracelet, a JDRF (Juvenile Diabetes Research Foundation) t-shirt, and he had patches on the back of his arms, his thighs, and his stomach; which are some of the locations that insulin injections are given. Rufus the bear was a huge comfort to Alyssa. She carried him with us around the hospital and he slept with her every night.
When she got out of the hospital, we began our new life with diabetes. Diabetes management requires a controlled eating schedule. In order to keep Alyssa’s glucose levels balanced she has to eat three main meals at about the same time each day. Because her levels are so sensitive to activity, she also has to eat snacks between meals and at bedtime. If she doesn’t get these snacks or is more active than usual, her glucose levels could drop and cause her to pass out.
Alyssa’s three main meals need to contain about sixty grams of carbohydrates and her snacks need to contain fifteen grams of carbohydrates. Her simple sugar intake has to be kept to a minimum. Because of this, diabetes affects our entire family. My two older sons are amazing. They adjusted well to the sugar in our home being replaced with Splenda and the cookies being exchanged for sugar-free alternatives and other healthier snacks. They took part in training by assisting with her injections and glucose checks. They learned how to read nutrition labels and calculate carbohydrates. Alyssa’s glucose levels have to be checked at least six times a day: before each meal, before bed, and even while she sleeps. I set my alarm clock for two in the morning so that I can make sure her levels don’t drop too low during the night. This was a complete new lifestyle, to say the least.
After about a week at home, it was time to get Alyssa back into her world. The process of her returning to school moved smoothly, as there were two other students in her school that also had diabetes. Her teacher was trained and jumped right into monitoring Alyssa’s care while she was at school. One afternoon Alyssa came home from school and said that a lot of her friends were asking about why she was having snacks and why she had to go to the office every day before lunch, so she asked her teacher if she could read her class the book about her bear Rufus. Alyssa read the book to her class that day and introduced them to Rufus. She had accepted her disease; she wasn’t trying to hide it, and even at the young age of seven, she thought it was important to educate her classmates. I told her that I was very proud of her. She looked up at me and said, “Mommy, I’m still the same girl. I just have diabetes.”
After she told me about her experience at school, I began doing research about JDRF. I truly believe that the care package that she received in the hospital that included Rufus influenced her rapid adjustment. The JDRF organization has been such a huge help to us. They have tons of resources for parents of diabetics, information about advances, and they are the largest contributor to diabetes research. Through my personal investigation, I found that a cure for this disease is within reach and I believe Alyssa will see it in her lifetime. I feel confident that one day I will be able to say, “My daughter used to have diabetes.”
Alyssa’s complaints are seldom, but on occasion, she asks why she has diabetes. I tell her maybe it’s because one day you'll help other type 1 kids. Then we discuss how her beta cells in her Islets of Langerhans do not produce enough insulin to turn her food into fuel (she thinks the Islets of Langerhans is a funny name) and that is usually enough. Recently she asked me if she was going to die early. She may not fully understand the conditions associated with diabetes, but she knows they can be terrible and this is very scary to a now 8 year old little girl. My reply to her was that she is going to live a long healthy life and that the reason I make sure she checks her blood sugar, eats healthy, and gets insulin injections is so that will happen. This is a double edge sword, on one had you want to shelter your child from the scariness of this disease and on the other hand, you want to stress how important it is that she learn to take care of her body.
Sometimes I sit and think about what lies ahead for my daughter. I cry, I get angry, and I even scream occasionally. My job is to protect her and there are times I feel helpless. But then I remember there are so many other diseases out there and many other parents whose children are suffering with untreatable, incurable diseases and I’m thankful that at least we can somewhat control diabetes and I believe we will see a cure. And we are fortunate that more and more developments are on the horizon.
Alyssa continually amazes me and is a blessing to have in our family. Alyssa is a typical eight-year-old. She is an extremely active and a very silly little girl who always puts a smile on my face. She doesn’t let diabetes hold her back. Her positive attitude is a daily reminder of humility and strength and she is my hero.