I spent and lot of time here talking about how amazing life can be despite diabetes; how the burden of this disease – as unimaginably heavy it is – does not have to stop you from savoring life.
But sometimes, it just stops me cold. It shocks my soul. It, well, it pi$$es me off. Big time. This past weekend was one of those times. I’m still coming to terms with some news, and while I want to be all “Oh this will be fine,” I’ll be frank: I’m so very, very angry.
I won’t share names here, so bear with me as I tell the tale using some generalities (to protect the privacy of my friends, who are still dealing with all this).
First of all, I have this weird problem. I try to suppress it, but every time one of my friend’s kids has a baby (and yes, we are at that age: one by one, my good friends whom I still play tennis with, sail with, sometimes drink too much with, laugh with and generally act the same way we did when we were teenagers with, are all becoming grandparents) – anyway any time one of them welcomes a beautiful grandchild into their life, I am one of the first to celebrate. I dash to our cute downtown area and buy an adorable gift to drop off. I stare at the delicious pics on facebook. I imagine one day holding my own grandchild. That’s all normal.
Here’s what’s not normal: every single time; every single time, way down in my mind and my heart I think this:
Please, don’t ever let it be them.
You know what I’m talking about. Don’t ever let it be them. Don’t let that mom or grandparent or child know what it’s like to take on the challenge of learning to have an amazing life despite diabetes. Don’t let that mom do that first finger prick or needle injection on her own child thinking, “I shouldn’t be hurting her.” Don’t let that grandparent have to practically earn a medical degree to watch her own grandchild. Don’t let it happen. Now, I would never, ever say those words aloud. First of all, there’s this weird superstition in me too: don’t ever say it because that might help it happen. Second, that’s just mean. Every child is born to live a perfect life. Just because my child got a shorter stick in some ways does not mean I should even hint that there would ever be that possibility with another child.
And yeah, we all know: Type 1 Diabetes is rare. Really, “Only” about 1 in every 500 or 600 kids get it (those stats are not perfect; our nation has done a lousy job of tracking T1D incidences but that’s another blog for another day). So it’s safe to think that your friends’ kids are not going to be developing T1D. (Although it does happen).
Here’s the strange part of my strange problem: the only time I don’t have that terrible fear run through my head is when a young woman with Type 1 Diabetes I know has a child. When that happens, I’m all “This is a miracle!” And “You guy are rock stars!” and “See! It’s done and done so well!” I honestly never, ever think the “please don’t let it be them” thing. Because that would just be too unfair. The universe would never allow that. Right?
So that’s the back story, and sorry for the time it took. Now to the story.
I have a D-family that is very special to me. The mom is the very first D-Mom I ever met (before anyone knew that term). When my Lauren was diagnosed, a teacher in her school got in touch with this mom and asked her to help me. And for 15 years, she has. Since her girls (she has two with T1D) are a few years older than my Lauren, they’ve been my “proof.” Worried about transitioning to middle school? Saw them do it with style. Concerned about how my girl would juggle being an active high schooler and her diabetes? Like my Lauren, this family’s girls were active, popular, funny, in the middle of everything and yes, not perfect with their diabetes care. Send a girl far away to college with diabetes? Watched them do it and master it. Burn out and then bounce back? Yep – this family is one of the only ones to admit an a1c to me that made me realize my child was not alone. And then show me that you could turn it around. What a gift to Lauren and to me.
So last year, when I bumped into this D-Mom at a local watering hole (did I mention she also happens to be fabulously good-looking, wicked funny and fun to hang out with?) she reached into her purse, pulled out a picture of an amazing baby and just held it out to me. Wordless, we both BURST into tears and hugged one another. I think we might have jumped up and down. Some guy in the bar next to use said, “Man, you two are really into babies!” He had absolutely no idea.
Our role model had just forayed well into another wonderful part of life despite diabetes.
Fast forward to last weekend. I’d chatted with the D-Mom recently (we don’t talk all the time, but never a day goes by I don’t think of her and her family), and she’d told me to ride on behalf of her two girls as well (and made a huge donation to boot). It made me smile to think of her wonderful time as a grandmother who looks like a co-ed, and it was good to think back on all she has given me in life.
Sunday morning I was in Ottawa for my husband to run a marathon. I went out on a long, long bike ride (training, always training for that 105 miles in Death Valley). When I got back to the hotel room I looked at my phone. Message.
From that D-Mom, and just a few words, but more than I could almost fathom:
“Now you’ll be riding for (BABY NAME) too.”
That was all she wrote.
My worst fear; my secret worry I’d never share, had happened in the one place I was sure it never would: in a family that already has this burden.
Now hold off your “oh but they already know how to deal with this!” and “Mom and daughter will share this!” Baloney. This is, quite simply, a tragedy.
We never lose hope in this D World. We face down demons as vague as uncontrolled blood sugars and as visual as hostile, untrained insurance reps. We juggle more than most can imagine just to make things “normal.” We tell our children, over and over and over, “It’s fine.” Until we almost really believe it.
And kids who grow up with diabetes will tell you, for the most part, it is fine. Parents suffer and worry and stress way more than kids do, kids say (although I’m pretty sure that’s just them doing a durn good job at living despite diabetes, as we’ve worked so hard to teach them. It’s a fine balance of hard work and denial.)
But to become a mother of a small child (this child is not even near two years old yet. A baby still), while adjusting to being a mother with T1D yourself?
I’m sorry. It’s unimaginably horrible.
So where will it all go from here? I know this family. They will rock it like Springsteen at an arena concern. The D-Mom will be the best D-Mom role model one could ever be for her daughter. The daughter, now a D-Mom herself, will build a life for her little princess that’s charming and fun and silly and beautiful, all despite diabetes. And I’ll watch on, as always, in awe and with great humility at their strength.
This baby, this new mommy, her daddy, her new aunties, this new grandma and grandpa will absolutely live long, amazing lives despite their multiple layers of diabetes.
But I want it done. I want it over. Imagine a world when not one more child is ever diagnosed? Even with my own child deep into life with diabetes, I’d consider that Nobel Prize worthy.
All these babies, All this future. And I just don’t ever want to think it again.
Please don’t let it be them.