Parents Talking Type 1: Michele Steiner

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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zachary steiner

Zachary Steiner

Name: Michele Steiner
Location: Elk Grove, Calif.

My youngest son, Zachary, is 7 years old. He was diagnosed with type 1 diabetes about one week after he turned 5.

He has always been an energetic young boy. We used to joke that Zachary never learned to walk; he went from crawling to running. In late January 2012, we noticed that he did not seem to be himself. He was thirsty and lethargic all the time, and he had started wetting the bed (after more than two years with no accidents).

I became even more concerned one Saturday afternoon when he chose to stay home and lie on the couch instead of going to the park with his father and brothers. The following Monday morning, I called his pediatrician to schedule a physical. The pediatrician did not seem concerned; he sent us to the lab for a routine blood test and added a blood glucose check. I got a call at 10:30 that night from the on-call pediatrician, telling me to take Zachary to our local emergency room immediately. He told me to prepare myself to deal with the fact that Zachary had diabetes.

I took Zachary to the ER, where they did another blood glucose test. They showed me the display, and all it said was “HI.” Zachary was immediately placed on IV fluids and, as our hospital was not prepared to deal with pediatric-onset diabetes, UC Davis Children’s Hospital was called. We were transferred there in the pediatric critical care ambulance.

Zachary was hospitalized for four days as they struggled to get his blood glucose down to a normal range. We learned all that we could about diabetes and how to best care for him.

Earlier this year, Zachary was also diagnosed with celiac disease, which is more common in people with type 1 diabetes. (An estimated 10 percent of people with type 1 have it.)

Zachary’s diabetes and celiac disease has impacted our lives in a lot of ways, especially how we think about food. Meal planning, family and public events are not as easy as they used to be. We have to take more time and think about what we are preparing, how we are preparing it, how many carbohydrates are in the meal—is there a possibility there is any gluten?

Because of the potential for cross-contamination, we have had to restructure our kitchen. We had to buy Zachary a new toaster and we have a prep area that is strictly for his meals. We rarely eat out, as we are not confident in restaurants’ gluten-free claims, unless the establishment is 100-percent gluten-free, which is very hard to find. One of the biggest obstacles has been finding a pasta and bread that Zachary will eat!

We have all learned the signs of hyperglycemia and hypoglycemia, how to test blood glucose and how to administer insulin. We know when to ask him to test. Zachary’s young brothers (Cole, 10 and Ryan, 9) also have been very proactive in learning about diabetes. I often hear one of them ask, “How many carbs are in that snack?” or “Is there gluten in that?” They really look out for him.

While my husband Michael and I are the primary caregivers for Zachary, my parents and his older sister (Lindi, 23) will also give him injections. Zachary’s oldest brother (Matthew, 24) had a hard time accepting the diagnosis and is the only member of the family who has not helped Zachary test or given him an injection.

Sending Zachary to kindergarten was a scary time for us, as we were concerned about whether he would get proper support for his diabetes management. Fortunately, his school has been incredible! He has had a full-time health aide with him through kindergarten and first grade; she will be returning in August for his year in second grade. While Zachary can no longer eat in the school cafeteria, his “nurse” (as Zachary calls her) always monitors the lunch and snacks we provide to ensure he does not experience extreme highs or lows or ingest any gluten.

If you’re a parent new to diabetes, take a deep breath and know that everything will be okay. Use the resources available to you: your child’s endocrinologist, the American Diabetes Association, JDRF and local support groups. Meet other parents, ask a lot of questions and make sure you understand the answers. Know that you are not alone and that the diabetes can be managed.

Your child can live a normal, productive life and do whatever he or she wants. Zachary played flag football last season and will play again this fall. He swims and runs everywhere and does everything any other 7-year-old would do.

Nothing can make you feel better than talking to a child who has type 1 diabetes who says, “I have diabetes but I am okay.” Especially when that child is your own! Zachary is resilient and brave, and he inspires us every day.

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2 Responses to Parents Talking Type 1: Michele Steiner

  1. Lucy says:

    Very familiar with this story. I went to the same process with my son

  2. Audrey says:

    Michele,

    Thank you so much for sharing your positive and inspiring post. My 8 y/o daughter is in the same boat as your son Zachary, she has Celiac and Type 1. I knew about her Celiac from age 2. She was just diagnosed with Type 1 3 months ago. I also am inspired by my daughter’s bravery and acceptance of her diagnosis. It can be hard on the parents, but it’s the children that are going through all the tough changes. I have to sit back and remind myself of that.

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