How a Mother with Type 1 Diabetes Feels About her Daughter’s Diagnosis

Guest post by Jackie Johannes, mother of Molly Johannes.

Living with type 1 diabetes is challenging, but even after years of living with it, I was not prepared to deal with a having a diabetic child. That has been almost completely overwhelming at times. I’m a worrier by nature and I am equally concerned about all aspects of both of my children’s lives. However, I must admit that my worry is doubled for my daughter Molly due to her diabetes. Over the years, my husband and I have tried to balance this worry with letting her have as normal a childhood as possible.

The day I learned that my four year old daughter Molly was diabetic was one of the worst of my life. It was right before Christmas and I went to my sister Joanne’s house after work to pick up the kids. My sister, Paula, (a type 1 diabetic since the age of 10) was also there and we were going to make final plans for Christmas dinner. Molly approached me saying she was thirsty and my sister Joanne said “boy, she’s been thirsty a lot today”. Call it mother’s intuition if you will, but the hair on the back of my head stood up and I looked at my sister Paula. She immediately knew what was going through my mind, and said “just take her home and test her blood sugar. I’m sure it’s nothing”. So I did just that. I don’t remember the exact reading, but it was somewhere between 300 and 400. I was devastated.

Being a diabetic myself, I am well aware of the complications and risks associated with this disease. Many terrible scenarios filled my mind and I was overcome with fear for my child. It’s one thing to have to manage the challenges of diabetes for yourself, but it’s a whole new ballgame when your child is diabetic. With the help from loved ones, especially my husband, I realized that this was not the worst thing in the world that could happen to her or us. We had many things working in our favor among them: She had two type 1 diabetics right in her immediate family for support in her mother and her aunt (who conveniently happens to be a pharmacist, too) and also, because she was so young, she hadn’t yet developed bad nutritional habits.

We’ve been through many phases in the 15+ years since Molly was first diagnosed. When she was very young, she didn’t like to talk about diabetes with people outside of our family, including her closest friends. Looking back, I’m sure the reason for this was twofold: she probably thought they would not understand her condition and I’m sure she didn’t want to be “different” from the rest of the kids. As she got a little older and realized some kids had other issues, (for instance, severe allergies) she opened up more. While in junior high, the school nurse asked her to do a lesson in gym class explaining diabetes to her classmates. In high school, she and a friend went back to the junior high school and did a more elaborate demonstration for the student body. Molly also put on a “Movie night for Diabetes” in high school with all proceeds benefitting the American Diabetes Association as part of her community service project. In college, she joined the College Diabetes Network. She enthusiastically dove into the position as president of the UMass Amherst chapter. Currently, she’s blending her talent for writing and diabetes knowledge together by blogging for A Sweet Life.

In all those years, there have been trials and tribulations. As she’s grown, we’ve had to make many insulin adjustments. We’ve been very fortunate that she has not yet had a blood sugar so low or so high that it required medical assistance, but that’s not to say that we haven’t experienced severe highs and lows. We have gone through a rebellious period when she didn’t test as often as she should or ate whatever she wanted without taking an injection of insulin. Recently, we’ve experience insulin resistance to the point of taking several extra units of insulin without any effect on her blood sugar. As anyone who is either diabetic or helps care for someone with diabetes knows, this is a condition which is ever-changing.

Probably the most frightening adjustment we’ve had to make was when she went off to college. Would she test regularly? Would she eat right? What if she experiences a severe low in the middle of the night and can’t help herself? What about alcohol? It wasn’t an issue in high school but we weren’t so naïve as to think it wouldn’t be an issue in college. Will she know how to deal with that challenge? So many things could go wrong. I’m happy to report that she will soon be going into her third year at college, and we’ve had no serious issues. We are proud of how she’s handled independence, and for the most part, taken care of her health.

There are always going to be worries, but at least we know she’s mature and responsible enough to care for herself. Although it could be considered a curse, we’ve decided to consider the fact that we are both diabetic a blessing. We know that we can always use each other as a resource regarding diabetes questions. And we both understand how the other feels when one of us has a high or a low blood sugar. We are also blessed with a husband/father who is as involved as possible in our care.

Life is going to hand all of us lemons from time to time. The key to survival is turning those lemons into – sugar free – lemonade.