No one should be talking about a child whose life was lost to undiagnosed Type1 diabetes. Yet when it happens, everyone should be talking about it. This is another of the sad, infuriating diabetes dichotomies. This past weekend I heard about two young children who lost their respective battles with Type1 as a result of a delayed diagnosis. It’s easy to think that diabetes isn’t a big deal–I’ve tried to cultivate a balance in my work because I promote empowerment and highlight people with diabetes on my podcast and blog who are pushing limits and climbing mountains. I’ve also integrated that message with my work in type 1 diabetes research through Glu–precisely because I know that empowerment is a big tent–and knowledge and shared information is a key part of that.

exercise and diabetes outdoor adventure
Photo: Jeffrey Lash

I take these criticisms to heart because it’s the fact that diabetes is so serious in the first place that these adventurous and athletic achievements are so meaningful. Going to the gym, hitting a mountain bike or paddling run–climbing a mountain–those take on a whole new level of challenge when you’re taking your life in your hands before you ever tie into the rope. I understand that the person who has been living with Type1 for years is in a different place and has different needs than a toddler and their family who have just had their world turned on end. I don’t always feel like I have a lot to offer families in that position because those are uncharted waters for me.

I have a little girl who I love more than anything. Literally. She just turned one and she has been walking for months, getting into everything and making life at home more challenging than it was before. I am consciously choosing not to exaggerate that specific point with more colorful verbiage because I know that objectively speaking, raising one child with a supportive family is the “bunny slope” of parenting. But we don’t live life objectively and there are many times when I still feel overwhelmed just with the day to day.

type1 diabetes  screening through trialnet
Photo: Stefanie Richert

And then think about the “what if” that Type1 diabetes brings into the picture and my will just breaks. Even in the hypothetical scenario, I feel pulsating anger and frustration and the overwhelming desire to give in to despair. My diabetes is something that I manage with routine and experience. It doesn’t mean that I am always winning but I know my opponents moves. I’ve gotten caught with all the tricks in the books and I’ve survived. Just knowing the abuse I can withstand has oddly made me more effective.

That fact gives me no comfort on behalf of my daughter as I imagine her stepping into this ring. Here I can’t fight for her–all I can do is shout advice and encouragement and hope that she can hear bits and pieces over her own pulsating anger and frustration. As I keep reminding myself that this is still hypothetical–imaginary–I know that there is an answer out there. I can get her screened at no cost by TrialNet and find out if she has the autoantibodies that predict a Type1 diabetes diagnosis.

I was talking to a dear friend about Type 1 diabetes screening–he also has Type1–and he was kind of surprised that I was considering it.

‘You really sure you want to know?’

That was the exact question that I’d been wrestling with since the day my daughter was born. TrialNet won’t test until the child is a minimum of 1 year old so I had some time built-in to dither around in suspension. That year went awfully quickly. Knowing is half the battle they say–but knowing also means that half of the battle might not go in your favor. As I thought about the dilemma I realized that this decision came down to who I wanted to protect most. Not knowing would only serve to protect me and my psyche. It wouldn’t change the outcome and it wouldn’t help her. Even “bad” information is useful. Diabetes has taught me that lesson every single time I’ve had to correct a high or low blood sugar.

Stefanie scheduled the appointment with TrialNet at Joslin Diabetes Center in Boston and despite my kicking the can down the road with a few postponements the day finally came. Once the decision was made, the actual process was easy. Parking was the biggest challenge–and we were in and out in minutes. Of course she cried–but that happened before the needle even went in and I gained a new appreciation for the deftness of the seasoned phlebotomist on staff. It was still incredibly difficult for me and I felt like I wanted to choke. The knowledge that this was the best thing we could do for our daughter in the long run didn’t comfort me but it kept me from pulling the ripcord and running.

Its been a few weeks and we still haven’t gotten the results. I still struggle with what we might learn. I don’t have answers–only exponentially multiplying questions. For now.

Why am I writing this? Well it’s certainly not to brag about my parenting or to pressure anyone into screening. I’ll share with you that I constantly feel like I am a sub-par parent. I know that Stefanie does all the hard work and when I try to help–I make it harder still. I hope that if nothing else, this writing will help others like me who are wrestling with this decision about screening. It is anything but trivial, and the answer I settled upon may not be the one you choose. The decision to know is a hard one–but knowing that it exists in the first place is a powerful weapon.

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