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
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
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
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.