Parents Talking Type 1: Sue Carnicle

Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions such as: How can I strike the balance between caring and hovering? Will she ever be able to eat sweets again? How will I ever be able to let him go out on his own?

This is the latest in our occasional series from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.

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Kendra Ferguson (R) with twin sister Kallie

Kendra Ferguson (R) with twin sister Kallie

Name: Sue Carnicle
Location: Salina, Kan.

I have a daughter, Kendra, who is 17. She was diagnosed with type 1 diabetes at the age of 9.

I am a worrier and she is a free spirit. Kendra knows what she should do, but she doesn’t always make the best choices. It’s difficult for me to let go—we’ve been doing this together for almost nine years. I’m trying, and quite frankly I have no choice because she leaves for college in the fall.

I’ve been trying to let her make her own choices, even if I don’t agree with them. Fortunately, Kendra has been seeing a certified diabetes educator (CDE) on her own and has formed a relationship with her that will follow continue in college.

Kendra has been through a lot with her diabetes and other autoimmune issues. She has done things that have been great and things that haven’t been so great. The last three years have been a real struggle as she tries to fit in while having this disease. Kendra has a twin sister who does not have diabetes, so that alone is a challenge.

But she has also come so far. She has taken control again and we are seeing good results in her A1C. It was as high as 11 percent, but it is now at 8.2. I’m hopeful that she will continue with this downward trend.

I believe if Kendra would just be herself and be willing to talk about her disease (like she did when she was first diagnosed), she could help other children not make the same mistakes she has made. Kendra is creative and she has learned ways to make diabetes management work for her (when she wants it to). I believe that knowledge would be beneficial to others. I’m waiting for the “light bulb” to go on for Kendra. I think it could happen soon.

If you’re a parent new to type 1, don’t give up. Educate yourself and your child constantly. I also recommend finding a support system for both you and your child. One other huge note, be your child’s best advocate at school.

Also, attending Diabetes Camp was wonderful for Kendra. Kendra attended the American Diabetes Association’s Camp Discovery in Wichita for several years. I hope to have her camp t-shirts made in to a quilt!

I believe in Kendra probably more so than she does. I just hope she hears my voice from time to time next year. And I also hope I can refrain from having too many anxiety attacks while she is gone!

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10 Responses to Parents Talking Type 1: Sue Carnicle

  1. sally says:

    hey Sue, maybe stop labeling your daughter’s choices as “good” versus “bad”. Let her make her own decisions about her body. you’ve taught her and that’s the most you can do.

  2. Jen says:

    My son was diagnosed right after his 13th birthday. We have only been at this for 3.5 years, but it has been through the puberty years. Whew! It can be a roller coaster ride. One thing stuck out to me in the article: “I believe if Kendra would just be herself and be willing to talk about her disease (like she did when she was first diagnosed), she could help other children not make the same mistakes she has made.”
    My advice would be to not push this. My son has not said a lot about getting diabetes. He is not interested in having “touchy-feely” conversations about it or being on a message board talking to others about it. In fact, one thing he has said is that he likes to forget he has diabetes and only thinks about it when he is getting ready to eat something. He knows what he has to do to stay alive and does it. His highest A1C was 7.8. If he whips out his supplies to check his blood or inject insulin and someone asks him about it, he will explain it. The word “sucks” will probably enter into the conversation at some point. So, I don’t push him to talk about it. If he wants to he will, and sometimes he does.

  3. Caron DuBois says:

    It sounds like your doing a great job. It is hard enough getting your kids through the teenage years, then add a severe chronic illness to the mix just makes it more alarming. But you said she is going off to college, that is terrific! I will be sending my 17 yo daughter with TD1 off the college as well. I also am a worrier. But we give them the tools and support and try not to worry too much. Thank you for sharing, it is very helpful.

  4. Robyn May says:

    Thank you for your honest blog. This path we suddenly find ourselves walking is not of our own choosing, nor is it easy. Every situation is different and I’m grateful for those of you who are a few steps ahead of our family. My daughter was diagnosed 18 mos ago at age 11 and will be turning 13 in a few months. Tough years any way you spin them, with the added issues of Type 1 and psoriasis. I know I will NEVER get everything right, and she’s knows that I ALWAYS act out of love. That’s what matters most.

  5. April says:

    I am type 1, my daughter is as well, 3 yrs now. Most importantly, this struggle is theirs to learn from. The best you can do, is check in on them from time to time, not ALL the time. Not until I was in my early 20s did I start talking about it with others, educating, encouraging each person with their own personal struggle. Each diabetic is different. Some will check 10x a day, some won’t. Of course you want the best for your child, however, forcing them will only push them away or they will lie to you. Luckily I can always say, “Let’s be diabetics together”

  6. Sonya says:

    I was diagnosed with type 1 diabetes at age 11. I have now had diabetes for 29 years. My mother continues to be my greatest cheerleader and advocate. When I became an adult it was hard for her to adjust to me making decisions about my diabetes on my own. We both had to adjust. She has done well navigating the line between caring parent and diabetes cop. She and I both know that with this disease sometimes you can do everything you are told by your diabetes care team and still have crazy glucose levels. Remember that testing blood sugar levels gives information not judgment. I have always talked openly with people about being diabetic. Some people make odd comments due to lack of knowledge of the disease. This is just a chance to promote awareness and education about diabetes. There is no shame in having the disease. The word “different” doesn’t mean “wrong”. Your daughter will find her way. So will you. Just love, support, and accept each other as you go. It sounds like you have the love part covered, and that’s the most important part. Best wishes for a bright and healthy future!

    • Owen mommy says:

      Dear Sonya,
      Thanks for your story, it lighten my heart, and there is Hope, my son could live become adult.
      My son Owen 11 y.o , just diagnosed of Diabetics in March 2014. Many times I cry and complaint to God. To have diabetics in children age, un common situation in our country ” INDONESIA”. Sometimes people thinks this is very strange condition if the children have diabetics.

      • Sonya says:

        Thank you Owen mama for your reply. Diabetes is challenging and I am so sorry your son has been diagnosed with diabetes. It takes special people to love a diabetic. It means their love is bigger than their fears. Many people do not understand diabetes, even in countries where diabetes is a common diagnosis. When I encounter such people I use the opportunity to teach them about the disease, believing that every person educated about diabetes makes the life of all diabetics easier by decreasing ignorance, encouraging compassion, and inspiring contributions to research. I am sad that your son has diabetes, but glad he has a caring mother to help him on his journey. Best wishes!

  7. Susan says:

    Sue,
    Reading your story, my heart starts to hurt and I think of my daughter. Dx @ 17 months old, and now is 17 years old. This fall she’ll be starting her senior year and is already filling out her applications for college. I am so scared. She, like your daughter, also has had a rough time recently dealing with her diabetes. She is slowly getting down her A1C and is seeing her nutritionist and D educator. I know I have to let go, but I don’t know how I’m going to do it next year. How are you dealing with this and did you talk to the college where she’s going or do they have anything there for her to help? Staying strong….

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