I am sitting in my home office. Outside my double window I can usually gaze at the pond on our property, our town’s quaint historic district and beyond that, the sea. This day I see dark clouds. The trees are already whipping around in that “nature’s got something in store this time!” way they do along the oceanfront. I know what’s coming: For days now, the national weather service has been warning us: a crazy, scary, ginormous and possibly devastating storm named Sandy is on its way. They’ve told me over and over: be prepared. Get ready. You’re going to need to.
Exactly 15 years ago this same moment, I was most likely sitting in this same office, writing on a deadline and glancing out that same window. But that day, the sky would have been clear and the ocean blue. I would have been clueless as I sat there. I had absolutely no idea a crazy, scary, ginormous and possibly devastating storm was brewing right inside my own home; in fact, right inside the body of my youngest child, my freshly minted six-year-old daughter.
Because diabetes struck that day – with no chance for preparation, no grave warnings to stock up and educate myself and be ready. But hit it did; bigger than Sandy, and more frightening than anything I’d ever imagined.
Still, there’s a funny thing a friend told me recently about big storms; even big storms that pick everything up, shake it around and throw it back down in a strange and new way.
“Storms leave behind destruction,” that wise friend told me, “But in that destruction, they drop down treasures too.”
And that — on this my daughter’s 15th “diaversary –” is what I see. Because while diabetes absolutely picked up the life we knew before October 28, 1997 and shook it up in ways I would have never been able to imagine, so too did it bring treasure into our lives.
The greatest treasure of all, of course, is the strong, confident, self-assured, funny and brave young woman my daughter has become.
I have to say: while Hurricane Betes took me completely off guard and ripped what felt like my foundation out from under me, it did not do that to my daughter. Built of strong material, that gal, I remember her matter-of-fact demand of a team of doctors who were at her hospital bedside, talking over her about their plan for her care.
“Don’t talk like I’m not here,” my six-year old said, looking each of them in the eye and daring them to hint she was not capable of understanding. “This is about me. You need to talk to me.” And they did. Lauren really did take it on full-speed from that very first day. She didn’t cry about the endless shots. She knew how to prick her own finger before we even headed home from the hospital. She insisted on getting right back to school, adding the constant contact with the nurse to her life like it was just another kindergarten rule.
I tried to take her lead. But it took me much more time. True, a grown up worries more than a child. But still, Lauren led the way. I’m not saying she never complained. I cringe when I hear those parents who claim their children never, ever, even over years and years get mad at diabetes. I cannot stand it when someone says “oh, this child was chosen to have this. They can handle it and help others.” A life with diabetes is way to difficult and demanding and sometimes frightening and frustrating for anyone in their right mind to never question it or resent it. But overall, through the decade and a half (decade and a half!) that Lauren has faced this, she’s done it with class. And cool. And courage. And just plain awesomeness.
Which brings us to today. And how I feel about all this at this moment. Anyone who knows me knows I want nothing more in life than a cure for diabetes and better treatment until the cure. The JDRF Ride to Cure I did last week in honor of Lauren’s 15 years with diabetes and 21st birthday are proof that I will stop at nothing to keep pushing for that goal.
But I need to say this: At this moment in my life, I don’t live in fear of the storm (and believe me, Hurricane Diabetes is still blowing strong. There is no remission, no break, no time off once that storm has kicked up in your life). But so much is better. I remember when Lauren was first diagnosed; doctors and researchers would tell you that in 15 years, there was an overwhelming chance she’d be looking at the onset of some complications. It scared me, but 15 years seemed so far away. I hoped something would change. And it has. Kidneys that get wonky can be treated with medication. Eyes that begin to break down from decades of fluctuating blood sugars can be kept whole and working well with minor procedures. And more is coming.
And how about the progress of cure and treatment research? When Lauren was diagnosed, this was the total of human clinical trials on treatments and the like: ZERO. Today, there are more than 50. We may not have a precise timeline for the cure, but we have progress.
Daily care? When Hurricane Betes hit us, you really did have to stick to a meal plan and a lifestyle that was restrictive at best. Highs and lows were unavoidable, and you had to just go with it and fight in the best you could. Now with great pumps and more insulin choices, folks with diabetes can live flexible (albeit still a lot of work involved) lives. That’s an incredible change (and one I wish folks newer to this could understand and embrace. There is NO good time to be diagnosed, but man, things are just better.)
This is because we took action. We became warriors for the cure. I can honestly know that the years and years of JDRF walks and galas, of gifts and running programs, of endless hours of volunteering contributed to that change. And that feels good. Progress and empowerment are two amazing treasures we’ve found in this storm’s “debris.”
The other treasure is, absolutely, friendships. I say it all the time “Hate the reason; love the friends” and that goes for Lauren and for me. Lauren’s long list of camp friends and JDRF friends could take up an entire blog. So could mine (and we share most of them – kids and adults alike. It really is like family). Were it not for Hurricane Betes, we’d not know Tom and Coco Glass and family again ( some day I’ll share my Coco story here!), we’d not have Heidi Daniels, who is Lauren’s honorary aunt and my dear friend. Or Katie and Ellie Clark and family. I would not have gotten to know Peter Van Etten, former JDRF CEO, fellow ski lover and the man who looked me in the eye and said “Moira: don’t worry if you cannot donate a million dollars to research! Your work and leadership is worth that.” What a guy. There are so many others at JDRF too – Maryann Jacobson and Kristin Judd and Peter Cleary Laura Whitton and Ronnie Tepp and more and more. Or how about Renee and Ellen and Jeff Hitchcock and the gang, the first folks I ever met on-line (back in the days of dial-up!) I have fellow parent friends and adults with Type 1 friends whom I’d bleed in the street for, and they’d do the same for me and for Lauren. That’s priceless treasure, right there. Lauren said to me recently, as we talked about her sister’s upcoming wedding, “Man, Mom: we are going to need an entire section of my wedding for our diabetes world friends!” And she’s right. Those friends of hers and mine and ours have played a huge role in her thriving despite all this.
And while I never, ever worried about Lauren’s independence in life despite diabetes (have you met her? No way I was going to be able to hold her back from life no matter what), I now know for a fact she can go anywhere, do anything and be anything she wants to be in life.
Has this meant compromise? Absolutely. Look, her long time with diabetes has not been without worry and fear from me or without burnout and fury from Lauren. But never, not even once, did I ever say “This will stop you from doing what you want.” Never, not even when she wanted to go 500 miles away to college while not taking the best of care, did I say “it’s not safe.” The treasure there was courage. Sure, things could have not gone well some of those times, but had I held her back from her dreams there would have been a certain outcome: the loss of her dreams. Excuse my language but: Why the &*%$ would I ever let diabetes do that when I could control that? I’m proud of both of us for seeing that through.
So here I sit today, storm raging outside, thinking back on that storm that hit 15 years ago. I would wish it away in an instant. I fully understand the wrath of this storm could still be on the horizon. I know that it’s still difficult each and every day for Lauren to just get by.
But when I talk to her on the phone, I hear joy. She absolutely bubbled over at getting to shake our President’s hand last week. Her stint on the air for CSPAN has been incredible. She just finished her application for her dream internship and is waiting and hoping to hear back. She continues to have a billion friends and keeps on speaking up and advocating for a cure. She is interested in the world as a whole and truly using her college experience to become a person who can make a difference. It’s fantastic to witness. Sure, she has highs and lows and times when she cannot figure out what to change in her treatment plan, but she powers on.
So in the end, she – as she is today – is the most amazing treasure that storm brought in. Sometimes she asks me: would I be who I am today without diabetes? And I believe the answer is yes. She was built strong and smart and funny and brave. But the storm has challenged her to use all that to the 100th power, and she has. The powerful wind of Hurricane Betes took all that great stuff she has and forced it to shine brighter, grow stronger and just plain flex its muscles.
Fifteen long years. And here I sit, looking over the storm’s impact and fist-pumping with joy.
Lauren – and my entire family – has rocked survivor mode. And if there’s one thing I can tell the parent who is sitting in the hospital right now, shaken to the core at being blindsided by Hurricane Betes, it’s this:
Sometimes it’s going to be hard. Other times it will feel relentless. But you are stronger than this storm. You are smarter than this. And as powerful and devastating as it may seem, look for the treasure to drop around you.
Because it will. And that’s why 15 years is worth celebrating. To Lauren, to our friends and to an even better future: I am so thankful for you all.
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