It could be worse…

I am about to break a cardinal rule of Diabetes Etiquette. One of the big “Dont’s” is to say to people or parents of children who have been diagnosed with diabetes something along the lines of “It could be worse, it could be cancer”. Or, “At least it’s treatable/manageable.” I understand why in general it is a sound rule to follow. Diabetes is a difficult disease and can even be lethal. While meaning well, you don’t want to suggest that diabetes is easy, not serious, not dangerous, not a big deal. That being said, I am giving you a carte blanche to say this to our family anytime because that is how we feel about V’s diagnosis. Thank goodness it is not cancer. Thank goodness it is treatable and manageable. And, in regards to Celiac, thank goodness it is not a food allergy.

We have been extremely lucky. V was diagnosed with T1D at a routine well-child appointment. While it was a huge shock and stressor, and necessitated a couple of days at the hospital, it was not a medical emergency. While we witnessed some of the classic symptoms, V never got really sick. We never had to worry about her well-being or her life. Many families are not so lucky. I can’t imagine having to rush your very sick child to ER not knowing what is wrong. Or watch your child pass out or slip into a coma. Or agonize in the hospital not knowing if your baby will live or die. At the hospital, while we watched V being poked and prodded, she was never attached to the IV, and did not even have to wear a hospital gown. Our experience was as good as it gets under the circumstances.

With the diagnosis of T1D came many changes, but never did it feel like a possible death sentence. The treatment – insulin, multiple injections and finger pokes, carb counting – was daunting and overwhelming, but we took great comfort in understanding that the treatment is effective, doable, and will lead to a normal and healthy life. Once we discharged from the hospital, we want back to normal, with a little (ha!) twist. OK, our lives turned upside down. And yet, V returned to school, resumed all of her normal activities, and since out diet was not too horrible to begin with, we discovered that the dietary changes we had to make were not that significant. So we moved on rather quickly.

At the same time, I watched my friend deal with her 6-year-old’s cancer. They were in and out of the hospital, undergoing multiple procedures that were painful and invasive. My friend’s son could not go to school, could not even go to a playground. Their lives were disrupted in so many more ways. And then the worst news came. After almost being done with treatment and feeling like they were out of the woods, my friend’s son suddenly relapsed. Despite aggressive treatment, he died a few months later. I still cannot comprehend it. I remember sitting in the hospital room with V and thinking about my friend and her son, who at that point was doing very well in his treatment. And I could not shake the feeling of…gratitude. Yes, gratitude. Gratitude for being given an illness that, despite all of its difficulties and dangers, we can deal with, an illness that does not leave us with a sick feeling in our stomach, an illness that will not stop our daughter from living her life.

Hospital life is not so bad if it involves bacon ;)

Hospital life is not so bad if it involves bacon 😉

The feeling of gratitude persisted after our discharge from the hospital. I maintain that V has the “good” kind of “bad” diabetes, at least for now. She rarely has sudden and unexplained drops in BG. Her BG stays pretty stable overnight. She is not prone to developing ketones. Additionally, she is compliant, responsible, mature and independent, and is fully involved in her own care. My husband and I fully share responsibilities, we have supportive friends and family, and access to all kinds of support and resources. We are fortunate and, compared to many other families, we have it easy. I understand this can all change in an instant, and who knows what adolescence will bring, but I treasure this relative “stability” and “normalcy” we have for now.

Dance recital a week after T1D diagnosis. Take that, Diabeetus!

Dance recital a week after T1D diagnosis. Take that, Diabeetus!

Practicing insulin shots like the boss!

Practicing insulin shots like the boss!

During V’s hospital stay, they ran a Celiac panel. We did not even know it was done until the doctors told us that the test came back highly elevated and suggestive of Celiac. Once again I consider us lucky. My Dad has Celiac, so we were all very familiar with it, as well as with a gluten-free diet. If that’s another thing we had to deal with, it would be an annoyance more than anything else. Don’t get me wrong, no one was thrilled about it. But no one was scared or hugely upset. It took three months to get a conclusive diagnosis, which gave us all time to mentally prepare. By the time we made a switch to GF diet, everyone was ready. And it was a smooth transition, again thanks to our prior knowledge. And, between Celiac and a food allergy, I will take Celiac hands-down. Why? If V accidentally ingests gluten, she will not get violently ill. Her life is not in immediate danger. Yes, she may feel lousy and get some nausea and stomach upset. Yes, any exposure to gluten can cause further damage in small intestine. However, if she feels any symptoms of gluten ingestion, they are fairly mild and transient, and the damage caused by accidental, minimal and rare gluten exposure is small and reversible.

Ready for endoscopy. Also titled "F U Diabeetus and Celiac!" That's how we roll.

Ready for endoscopy. Also titled “F U Diabeetus and Celiac!” That’s how we roll.

Gluten-free dining in Disney? Drool-worthy.

Gluten-free dining in Disney? Drool-worthy.

Maybe I’m looking at the world through rose-colored glasses. I do tend to be a glass-half-full person after all. So while I discourage you from making “it could be worse” comments to other people dealing with diabetes, please feel free to say it to us. We share your sentiment with tremendous gratitude.

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2 responses to “It could be worse…

  1. Polina, I love your perspective! Had a good laugh at your comment about breaking the cardinal rule! A fellow D parent and I were taking with one of the staff members at our kids’ elementary school a few years back about this staff member’s child’s brand new diabetes diagnosis. Anyway, we were at an event that day, dedicating a reading nook to an 11 yo child who lost his life to a rare, aggressive autoimmune disease just a year earlier. His family was there and it was a very emotional dedication. When we reflected on the onset of T1, he said THIS (dedication) gives you perspective. They were adjusting okay. Diabetes is a tough disease but our children’s odds are good that they will lead long lives. I’m sorry for your friend and her loss! Yes, perspective is everything…

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    • Thank you Karen!
      I never wished we’d get so familiar with Children’s Hospital. But now that we are frequent flyers there, I’m always thankful that we go just to “visit”, do our outpatient appointments and go back home. And I always wonder about other families. What are they struggling with? Do they get to bring their kids home, healthy and well?

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