Antoinette's Story: Parent's Letter Project Type 1 diabetes – Antoinette’s mother

Breathe! I promise you that it will get better. When my daughter was diagnosed at five years of age, I thought that our lives would never be “normal” again. How would I ever learn all the information that was being presented by the diabetes educator and her endocrinologist? How would I ever understand the difference between a basal and a bolus, blood glucose monitoring, and what an A1C test result means? I have never been afraid of needles, but I was horrified at the thought of giving an injection in my daughter’s tiny little arm. But guess what? I learned all those things and so much more and so will you. Why? Because we have to! Not knowing is not an option!

Please empower your child and discourage him/her from using this illness as an excuse not to reach for the stars. I was a single mom when my daughter was diagnosed and I needed her to be able to take care of herself if I was not around. So, I encouraged her to learn about the illness with me. Even when I thought that she wasn’t paying attention, I would hear her tell her grandparents or a friend something new that she’d learned about diabetes.

We are so fortunate to have a wonderful Division of Endocrinology at Children's National. Take advantage of the knowledge that they are more than happy to share with you and your child. Ask questions, I can assure you, no question is a dumb question when it comes to your child's health. Make them a part of your team for success! Celebrate accomplishments like the first time they test their own blood, draw the insulin in the needle, or give themselves a shot. What an awesome achievement!

Expose your child to other children with diabetes. My daughter was the only one in her school with diabetes and it was always nice when we could go to events sponsored by Children's National or the Juvenile Diabetes Research Foundation and she could see other children who had to test their blood, give themselves shots, or take insulin with their pump. During the summer, let your child go to an overnight diabetes camp. Not only will it be an incredible experience for him or her, but it also will give you a break for a few days so that you can regenerate. We all need a break!

My daughter wanted a pump as soon as she saw one. Not all children want a pump. Please let this be your child's decision. I cannot imagine having tubing and a pump attached to me if I didn't want it to be there. Contrary to what you might think, having a pump isn't always easier, especially if the child doesn't want it to begin with. As parents we always think that we make the best decisions for our children, but I believe that some decisions should be made by those impacted most. Some kids can manage their diabetes quite well with shots. Be open to what works with your child.

Finally, and this is probably the hardest thing for us to do, please, try not to let your child see you stressed and complaining about how hard this illness is on YOU because it's not about you, it's about your child. Children pick up so much from us and if we are exhibiting stressful behavior or defeated conduct, your child will more than likely feel the same way. I remember talking to a parent about her newly diagnosed teenaged daughter who was stressing her out because she wasn't taking care of herself. Although I could understand how she was feeling, I also wanted her to understand how her words and stressful behavior was only making her daughter's situation more stressful. I can't imagine having my world turned upside down by this illness at the time in my life that I wanted to be like everyone else the most.

There are support groups for parents that you can join and use as your sounding board, not your child. Your child should always feel as if they can come to you about his or her illness and together you will handle any issues that might arise. When my daughter was diagnosed, her endocrinologist told me that one day diabetes would become a part of our lives just like anything else. I remember looking at her like she was speaking a foreign language. How could all of this ever become a “normal” part of our lives? Well, my daughter started high school this fall. She catches the bus and the subway to school every day; she goes to the mall and the movies with friends; and attends football games and homecoming dances. The most “abnormal” thing about my daughter is this weird piece of equipment that is constantly attached to her ear. It's called a cell phone and is just as much a part of her as the pink device that she clips in her bra that acts like her pancreas and keeps her alive.

Thus far, she and I have learned how to manage her diabetes; however, it's the teenage years that I am more fearful of not surviving!

Sincerely,

Toni’s (who wants to be called Antoinette in high school) mother

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