Seven years ago, my daughter Madi was a very active, creative, outgoing kindergartner. She was a happy and healthy 5-year-old.
That February things started changing. Her teacher was reporting that Madi seemed tired, pale, and "spacy" before lunch, and was having trouble paying attention. And after lunch Madi started complaining that her stomach hurt, and she seemed lethargic and occasionally cried for no apparent reason. Though Madi had always loved school, I was concerned that she was having trouble adjusting.
Soon, Madi began complaining of being thirsty all the time, requesting drinks in the middle of the night, and then wetting the bed. Her height and weight weren't increasing as they should have been.
In March, after eating a piece of candy after ballet class Madi felt nauseous and was glassy eyed. Her dad has type 1 diabetes, as does my mom, so as much as I didn't want to, deep down I knew what was happening. We tested her blood sugar that night: It was 585, a number I won't ever forget.
We went to the emergency room. At the hospital, it took more than an hour for five medical technicians to get an IV started. Once they were able to start Madi on insulin, she quickly turned back into the loving, easy-going child I knew. But she was very scared. Each time they tested her blood sugar, Madi insisted on having a Band Aid. Each injection required a Band Aid too. By the end of the day she was covered in Band Aids, but no closer to accepting her illness.
The next day she met with a dietitian and a diabetes educator. When her pediatrician visited, she tried hard to get him to say that it would "go away" once she was released from the hospital.
As Madi struggled to understand her diagnosis, her dad and my mom struggled with feelings of guilt about possibly passing diabetes on to Madi.
Once Madi realized that diabetes does not go away, she accepted responsibility for testing her own blood sugar. (She also learned that her life would be easier if her fingers were not covered in Band Aids.) Within a few months of diagnosis, Madi was giving her own injections and learning to count carbohydrates in foods. She joked that having diabetes helped her learn her numbers to 600 while other kindergartners were still trying to learn their numbers to 20.
Finding Control and Freedom
Madi decided early on that she would not allow diabetes to get in her way, and determined to make it a positive part of her life. She became involved with the American Diabetes Association (ADA).
Although Madi has never been a child who sneaks treats, her blood sugars have always been difficult to manage. She is very active. At age 7, Madi was up to seven insulin shots a day just to regulate her blood sugar. Even with intensive management, she had frequent highs and lows. Madi was always careful about what she ate and diligently counted carbohydrates, but she seemed no closer to control than she was when she was diagnosed.
For 2 years, Madi's dad tried to convince her to look into an insulin pump, which he had had success with. She wasn't ready, but she eventually came around. In the second grade, she went to the nurse after lunch at the same time as a friend who wore an insulin pump. When Madi saw how quickly he could press a few buttons on his pump and return to class, she was impressed. She decided she was ready.
Now she loves the freedom her pump provides. Before, there were times Madi went to bed hungry because she would mentally weigh every small snack to decide whether it was worth it enough to have to take a shot. Having the insulin pump made it so that she could have occasional snacks and not have to make those decisions.
Six months after starting the pump, Madi learned to insert her own pump catheter into her skin and to fill the insulin reservoirs. Even though it could hurt to insert a new pump catheter, she found it preferable to taking seven shots a day!
And we soon began to see positive changes in her blood sugar levels. She was not dropping so far and so quickly during the night and she seemed more consistent during the day. We did not see immediate changes in Madi's A1c readings (tests of her blood sugar levels, taken every few months) but within a year they were back into a more acceptable range.
One Active Kid
Today at age 12, Madi continues to work hard to keep her diabetes under control. She is very active, plays roller hockey, and is involved with dance, drama, singing, and children's theater. As a youth ambassador for the ADA, she has organized numerous fundraisers for the ADA, from raffles to selling ADA beanie bears to the annual "Skate 4 a Cure" events. Last year alone Madi raised $10,000 for the ADA!
Madi also writes letters to public officials, congressmen, and even the president about the need for research funding. When she hears about other kids who are diagnosed, she puts together decorated bags for them with crafts, a stuffed animal, carbohydrate counting cards, an ADA wristband, information about diabetes, and a note offering her friendship and help. She gives speeches and distributes information at community events.
As Madi's mom, I ache over the things that she has to do every day and the things that she thinks about every minute. I know she worries about what obstacles she'll face. She knows of the potential consequences of not keeping her diabetes under control over the long term. She works hard to keep her body healthy.
Madi used to think that when she grows up she'd go into diabetes advocacy, but says she's working so hard to help find a cure that she hopes those occupations aren't needed when she's older. So, she has decided to become a performance artist so she can make people smile. She makes me smile every day.