Life – particularly with diabetes on board – is a series of choices. Looking back on the 20 years of my daughter Lauren’s diabetes, I can see that how we faced those choices shaped how we live today.
So what of the choices? They came at me (well, us) from day one, and have kept coming since. Here are some most important choices we’ve made along the way:
To remember that from beginning to end, diabetes was about Lauren first. When we were in the hospital, Lauren a tiny little thing with IV’s in her arms and doctors talking over her to me, sat up in bed and said “Stop talking ABOUT me. Talk TO me. This is me, so I want you to talk to ME about it.” She was only six at the time. We’ve chosen that all along. Any time there’s anything – a medical decision, an advocacy situation, a story to share, a pump to be chosen; whatever: Lauren’s feelings on the matter, have always – and always will—come first.
Side note: I did once have to say to her “You are not speaking in the Democratic National Convention dressed like a prostitute! We’re going to Talbots!” – But I think she appreciates that I did not give her a choice that time.
To deny fear a place at our family table. Hey, it’s easy to be afraid. It’s easy to live your live with fear dictating your every move. What’s harder – and more enriching, if you ask me – is to make the choice to NOT let fear dictate your life. We always felt that if we could learn our way past the fears of diabetes, we’d be better off. And we are. I can honestly say I don’t harbor any more fears than the average parent of a young adult living in a big city. And that does not come from denial; it comes from education, experience and a little bit of trust.
To build a community. This is something I realized shortly after I had my first child. A community of like-minded people facing the same general experience is priceless. I am so thankful for those coffees of long ago with my gang. To this day, I lean on my community, and Lauren now leans on hers. Making the choice of finding – and supporting – that community was and is key.
Sidenote: I still wish we were a community focused on collecting wine or something instead…
Advocate. Not everyone can do everything, but each of us can do something. It took me a full year to realize that by doing in the diabetes world, I would get back. In our years of walk teams, galas, helping newly diagnosed families, speaking out, advocating, and funding research, we’ve reaped so many benefits. The biggest one, I think, is positivity.
And, of course, there is the first-hand knowledge that we have changed Lauren’s future, and continue to. Smarter pumps. CGM’s. Breakthroughs that are now in clinical trials for prevention. Being able to mass produce islet cells. Understanding more and more about the biology of the disease.
Advocating has boosted us emotionally for 20 years, and will continue to as we move into new decades.
I remember myself exactly 20 years ago, a scared (okay terrified, crushed and barely recognizable) mom picking up the giant bags of diabetes supplies (that looked like Chinese take-out bags!), thinking as they weighed me down: this is going to swallow us whole. We will never be the same.
Well, one part of that is true: We are not the same. But instead of diabetes destroying us, it has forced us to consider our lives and take this terrifying thing and turn it on its side. We chose to find our way past fear, into community, and to a place were I can say, 20 years after that tiny girl was diagnosed seemingly out of no where:
The kid is all right.