What NOT to say to the parent of a T1D

My son was diagnosed with Type 1 Diabetes in October 2009. He was only 8 years old, and while we are getting used to living with a chronic condition, life with Diabetes is never easy. Over the last nearly three years, we have had our fair share of conversations with both friends and strangers, most of whom seem to have some advice for us about how to handle the new member of our family; diabetes.

When you have a child with an invisible disability, navigating the waters of social interactions all of a sudden becomes very tricky. When that invisible disability is actually life threatening, it can turn regular, moderately sane moms (and dads) into raging beasts that sometimes lose their cool and lash out at folks who are only trying to be sympathetic or helpful.

The best reactions from me come when the person I am talking with asks, first and foremost, how my son is doing. Not how are his numbers, not about his disease, but how is HE doing, remembering that while he is a diabetic, he is person first. So, what is a good intended, well-meaning person supposed to say when the person they are talking to discloses that their child has diabetes? That might be easier to answer by discussing what not to say. There are a few triggers for the T1D (That’s our short hand for Type 1 Diabetic) family.

First, please, do not assume that you understand the disease unless you live with it too. There are, unfortunately, copious amounts of information at the ready for all things related to Type 2 Diabetes, but very little of that is applicable or appropriate for a T1D. Even more unfortunate is that the media does not bother to differentiate the two, making claims like “A Cure for Diabetes Found in Acacia Berries,” without stating that this will do nothing for the person with Type 1. Given that the media is fraught with this sort of hype, it is easy to assume you may have the magic bullet from the latest Dr. Oz show. False information enrages a T1D parent faster than just about anything else.

So let’s clarify some of those misconceptions right now. I don’t care what you have heard; diet and exercise will not cure my son. I did not feed him too much sugar as a child. It is not that I didn’t breast feed long enough. It is not that he was lazy and should have been encouraged to exercise more. None of those things had anything to do with why he developed T1D. There are no miracle pills to cure him of his inability to make insulin. Going Gluten-Free won’t help (he has diabetes, not celiac). It is perfectly acceptable, and in fact necessary, that we have diet soda in our house, as a regular soda would cause his sugars to rise so fast that he would be unable to successfully combat it with insulin. There are times, of course, when he MUST have regular soda; when his sugars are dangerously low, please, by all means, hand that kid a Coke!

Please, I know you are well meaning and trying to be sympathetic, but I do not need to hear how your grandmother was a diabetic and lost her leg. I don’t need to hear how Uncle Harold died from heart failure after he went blind and lost a few toes because he was diabetic. Trust me; parents of children with diabetes, and T1Ds themselves, KNOW the risks and all the possible negative outcomes from this disease. We live, we breathe, and we sleep them. Ok, that last part is not quite true; many of us do not sleep as we are up checking our children’s sugar levels at least two or three times a night.

Please do not say to me “But he doesn’t look sick.” He doesn’t. Nor do any of his diabetic friends. This is not a disease you can see, unless he is very low or starting to go into Ketosis (A condition where his blood sugars have been so high that the sugars are literally turning acidic in his blood). But this disease is unrelenting. My child, and every T1D out there, cannot open their mouths without thinking about carb counts and insulin. I ask my poor child nearly 15 times a day to check his blood sugar numbers because he can go from low to high, and from high to low within an hour. I ask him about covering for his food, because the consequences for missing a dose of insulin can be bad. Making that a habit can be very bad. Too much insulin and he could die. Allowing his blood sugars to rage out of control, and he could die.

So what can you say? What would be helpful to the parent who may just be teetering on the edge of sanity between the constant worry and lack of sleep? Ask me how he is doing. Not how is he doing about his diabetes, but ask about how he is. Ask how I feel about his diagnosis. Ask me about what it is like to live with this disease. Ask how you can help. Sometimes, all a parent of a T1D needs is to get away and not think about diabetes for a few hours. Sometimes we need a shoulder. Sometimes we are excited about the progress research is making and want to talk to someone about it, so be willing to listen. Sometimes we need to know what is important to us is also important to our friends, so come walk with us when we do our fundraiser.

What is the best thing to say to the parent of a child with Diabetes? Say that you care.

No Sugars Added

Yesterday, the family and I attended a great day hosted by JDRF Southwest Chapter called Transforming Lives. We were there all day to listen to speakers, talk to vendors, meet other FWD (Families with diabetes), and the kids were able to play, or come to a session and listen in. Very helpful, very informative, and meeting a gentleman who has been managing his diabetes for nearly 70 years is nothing less than inspirational! I have a few take-aways from the day, including the fact that it is VERY important that we, whenever possible, bolus BEFORE we eat. I have known this before, but it was really driven home. Being able to use all the information one gets when diagnosed with diabetes sometimes takes a while; we need to digest it in bite-sized pieces. The other very cool thing we were able to do was to participate in a clinical trial. As 1st generation relatives of a person with T1D, we can screen for antibodies which are precursers to developing the disease. What this means is two fold; if no antibodies are present, we can sleep soundly knowing that person will NOT develop diabetes. If there are antibodies present, there are things we can do to help stave off the onset of the disease by as much as 5-10 years. With the way science is expanding right now, in 10 years, we could concievably have a vaccine!! Prety cool advances happening.. wish we didn't have to pay attention to them, but since we do, I plan to do all I can to ensure the latest treatments and latest research are being properly funded! (Just send me to Washington, hand me a bull horn, and put me on a soap box!!)