I was walking through the gym after a particularly grueling spin class when a friend working on a weight machine called me over. “Did you hear about Chris?” she asked.
I hadn’t, and so my friend began to tell me a story that I immediately knew would end with a Type 1 diabetes diagnosis. “Chris’s 16 year old son had been doing really great, running a lot. He lost a lot of weight really quickly, but then he started to just get so thirsty…”
You know the rest.
I was still catching my breath from an intense workout, and then anger arrived. And concern. And pure heartbreak. All of those emotions were twisted into a kind of sadness that, I belive, only someone who has felt it can understand.
I’d not felt this kind of profound sadness over diabetes in years. Now, that might make you wonder: how can she have not felt deep sorrow when her own child has been battling diabetes for 19 years? Sitting in the car outside the gym and gathering my emotions (and finding my friend’s cell number to text her support), the far-away, yet so familiar set of feelings threw me off.
Had I become cold? Had diabetes become not a big deal? Why, if my child is thriving in life and her career, was I so very sad for this family?
And then I realized: it’s called survival.
For 19 years, my focus and goal as the mother of a child with diabetes had been survival. And in life with diabetes, that meant developing a new level of acceptance. It meant looking at the strange and challenging daily situations as normal. It meant looking past the troubles and complexities and going directly to the result: a happy moment, a happy day, a happy life. In other words, I took that blanket of grief and heartbreak and added fringe. I wove in the good, thick and bright, to downplay the bad.
I doubt that most people my daughter works with or hangs out with have any idea what she does on a daily basis to survive. And you know what? Advocacy and awareness aside, sometimes I’m kind of glad. I’ve never been a mom who wanted anyone to think my child was not capable of anything in life because she has diabetes.
I also doubt many people know that deep inside of me is the sadness that bubbled up today. Because as much as I think it’s possible to do everything despite diabetes, I hate that this new family has to learn to smile in the face of all of this. I despise that right now, a child and his family are confused, scared and overwhelmed. I detest the challenges I know are before them.
But I’m incredibly proud of my child, my family and yes, myself, for how we’ve managed to live life well with diabetes on board for the past 19 years. And because I know I can be a source of help to others, like this newly diagnosed child and his family. I’m also blown away at how – and this is important – even with our positive outlook and positive message and insistence on shaking it off and rocking along as diabetes constantly pokes at us – we’ve been able to make a real difference in advocacy, outreach and funding a cure.
One might say it’s been a – to twist a title – Heartbreaking Life of Staggering Beauty. The heartbreak is there, for sure. My reaction today to this news reminded me of that. But the beauty has softened it: the beauty of courage in action on a daily basis. The beauty of an incredible community. The beauty of feeling the love when friends donate to our causes, or just ask how we’re doing.
I’ll offer all I can to Chris. I’ll know to let her cry, and I’ll understand when she is fearful. But I hope when we meet up in person she’ll see in me the beauty that can come from all of this. I want to give her that. And from her I can take back the knowledge that none of this is okay, even though we’re okay.