I hate having Diabetes!

Anyone who has dealt with weight issues knows how hard it is to manage your weight and still eat. When your child has a disease such as diabetes, learning how to balance food, insulin, exercise and still manage to have a life seems almost impossible. Add to this the fact that your child has cognitive delays and will probably never be able to independently assist in the treatment of her illness and you have quite a challenge.
That is where I find myself this week, wondering how I can help my girl understand and work with me to manage her diabetes.

Doctor Visit

Why did this comment of “I have having diabetes!” come up? We had a pretty good meeting with our diabetes team this week. My kid has a great team. Her blood work was good, but, yes, the big but, the number that tells us how well we have been managing her blood glucose levels (A1C) for the past three months was a little higher than before. Not a lot, just .7 higher and my girl heard it and got sad.

What is the A1C?

aic
A1C Chart
The A1C test is a blood test that provides information about a person’s average levels of blood glucose, also called blood sugar, over the past 3 months. A little short intro to diabetes, your blood sugar has a “normal” range and your pancreas releases insulin to cover the food you eat to keep it within those limits. When you have diabetes, this doesn’t happen so you have to help your body with insulin, pills, diet or a combination of them. The A1C test result is reported as a percentage. The higher the percentage, the higher a person’s blood glucose levels have been. A normal A1C level is below 5.7 percent.
We have been pretty consistent on teaching our daughter the meaning of her blood levels when she does her daily four to five tests. She is able to understand if her blood glucose levels are low or high and what she has to do about it. This has taken some time, including working with charts, with the school nurses, and reading about it with her.

Why was it a problem?

Did you know that individuals who live with diabetes have a lot of self-care responsibilities? I know you would say we all do, but there is a lot that goes on in their life. My girl does blood glucose tests at least 4 times a day and every time she worries if the numbers are going to be “good” or not. She stresses out when she has a high number which, if it is, then causes her to feel like she did something wrong. Studies done have shown that depression affects many people with diabetes. According to a study done by Anna M. Friis, Malcolm H Johnson and others:

Individuals living with diabetes have self-care responsibilities that can be overwhelming. This can lead to diabetes-specific distress, negative self-evaluation, and self-criticism of failures in managing one’s diabetes. Major depression affects many people with diabetes, with mood symptoms and distress apparent in nearly one-third of all people with diabetes. Mood difficulties have been shown to be linked to poor blood glucose control and increased diabetes complications.

As a parent I don’t want my kid to feel she did anything wrong, it is up to me, the parent, to ensure she has the right food to eat, does exercise, monitors her sugar, and gives her medications.

What are we to do?

Anyone who knows my girl knows she has a great sense of humor and is funny beyond belief, but when she is not feeling well, or her blood sugar is high, she is such a different person. Part of what I have been trying to teach her is to be nice with herself when these things happen. When she said to me the other night: “I hate being diabetic!” I thought I knew what she meant, but then I asked her why and when she said: “Because I don’t want my numbers to be high.” I knew she had a good understanding that the doctor had said her numbers could be better and it was up to her to do something about it. I needed to help her understand that this was something we could do together and it was a team effort, not something she had to do alone.

blood-glucose-levels-chart-kids-and-adults
Blood glucose levels chart for kids and adults
When we have medical issues, we always blame ourselves for our shortcomings in taking care of ourselves, our children are no different. We need to help them not get stuck in the feeling that they can’t do it, or that it is their fault. So when the doctor asked if we wanted to see a nutritionist, a support group and come back to see her sooner than our quarterly appointment my beautiful daughter said YES! Like her life dependent on it, the reality is that it does. If we don’t take care of managing her diabetes now, we are condemning her to a hard life when she gets older.

Oh the guilt

Caregiver’s guilt is so real and is the feeling you get that we are not trying hard enough for our kids, mom or dad or that we are not doing what is right. Been there? Me too, not only because I feel I’m not doing enough for my kiddo, but because in trying to do what I have to do I have also neglected to do other things, people, activities or myself. Lately I’ve been asking myself who put these expectations of perfection in my head. It certainly wasn’t anyone in my family because none of them do what I do or have the responsibilities I have, no, it all comes from me! So what can I do to help me and in the process help my family?

  • • Recognize you are having negative thoughts and feelings
    • Recognize you are having unrealistic expectations about what you can and cannot do
    • Recognize you have to let go of the guilt
    • Understand where your feelings are coming from and how you can react to them next time you have them.

Sounds easy right? But we all know it is not that easy to get rid of a feeling of guilt. However, you should continue to work through them and see if you can sometimes put them aside and work through the guilt. Don’t forget you can always talk to your partner, a friend, a professional, or someone else that can look at your life removed from the feelings, and help you understand and move through the feelings.

New Strategies

My daughter and I have made a new plan to work out three times a week, make better choices of foods and snacks, starting in the grocery store. I want to make sure I too stay healthy for her, since I am her primary caregiver. I don’t want her feeling upset and sad about her diabetes and I don’t want to feel guilty because if she is not doing well, I feel it is my fault. I want her to understand that we are starting at a new place of “can do”!

I leave you with this: “Self-compassion is simply giving the same kindness to ourselves that we would give to others. ” – Christopher Germer

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Luz Adriana

My name is Luz Adriana Martinez and for the past 27 years I have been working in the field of advocacy for children with disabilities. I hold an MBA from the University of Phoenix and a BA from the Inter-American University of Puerto Rico. I'm married to a great guy, Tito, an Army Veteran of 22 years, who supports all the crazy things I do. Being an Army wife also prepared us to be always on the move and without daddy for long periods of time. This also gave me the opportunity work and volunteer with organizations whose mission was to assist other military families. This blog results from my desire to give back to the many families that have given me and mine so much. I have had the fortune to be able to travel the world assisting military families and now that that stage of my life is over, I want to continue to share what I have learned in the hopes that I can still provide some information and resources to families who need it.

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  • bluerosegirl08 on September 17, 2016

    Luz I am right there with you.\. On top of my Cerebral Palsy both sides of my family have a history of diabetes . Add to that history the fact that our babysitter when we liven on FT Bragg was an insulin dependent diabetic and I bet it doesn’t surprise that me and my sister knew exactly what a diabetic coma was from a young age. I have a ton of self care guilt because of my CP and the fear of ever being diagnosed with diabetic compounds that guilt at least ten times. I am very impressed that your daughter accepted the extra support the doctor offered for herself, I have seen nany parents of children with cognitive differences assume that their kids can never have any form of self agency and therefore never even give them opportunity to use it. You are doing a pretty awesome job from what I can see.
    Rachel from the Blogher Writing Lab group.

Thanks for the comment. Anything else we should be talking about?