What can you say to your child that you haven’t said a million times over the 14 years she’s battled an incurable disease? How do you voice true hope and win her over with faith when really, she has no certain memory of what life is like not in battle?
That is my challenge today. Because it was 14 years ago this very day, at exactly 2:35 p.m., that a pediatrician looked me in the eye as I sat next to my wilted, weakened child and said “What do you know about diabetes?”
Lordy, have we come far since that horrific moment. My daughters (both were there that day) like to tease me about my uncharacteristic reaction. (I completely lost my mind. And by that I mean I completely lost my mind. They had to bring two other doctors in to calm me down and get me to listen; I think at one point I tried to leave without my kids. The chief pedi, who has known me since I was a teen and an overachieving A student, said of it weeks later, “Moira, it was really kind of fantastic. You weren’t perfect!”) Yeah, we laugh about it now. I remember my friend Julie calling me at the hospital and asking what I needed, and me saying “Can I just sob into the phone for a while?” and then doing that, Julie quiet and patient on the other end of the line. I remember giving Lauren her first shot (sorry about the force of that one, girl!) And I remember five days later when the endo said we were ready to go home saying to him – with all sincerity — “No. We are just fine here. There are lots of games in the activity room. We love playing Candy Land over and over, and I really don’t mind sleeping on this chair/bed thing. We’ll just stay.” That endo, still a dear friend, told me that we could stay as long as we wanted but that what I needed to realize was that outside those walls was life. And a good, rich, interesting life at that.
Of course he was right. But it’s been – and continues to be – quite a journey.
It was easy to put into words those first years, and each year we “celebrated” a “diaversary” I’d find a way to make it happy. Dinner at a fancy restaurant, more than a few Coach purses (for her and her sister, not for me) and slumber parties. We were thrilled to discover the JDRF Walk fell right around her diaversary time, so we made sure to make a huge deal of it, raising a ton and holding a giant party at our house afterward. This always meant half the young girls in our town sleeping over that night. In some ways I wondered if I was spoiling her. But then I think back to one year when she was still little. The party had cleared out; all that was left was my husband, me and about 14 little girls. We had some candles lit and Lauren suggested we place them all in one spot and then asked her friends to form a circle around the candles, holding hands. “You,” my then maybe eight-year-old daughter said solemnly to the group, “are my circle of strength. Walk day is what gets me through this. You are what gets me through this. So everyone, when I count to three, make a wish. And I want that wish to be your present from me.”
Oh. My. Gawd. Talk about getting it. That was not the action of a spoiled child. My husband and I felt humbled to witness it.
At five years, I wrote a long note to then JDRF President and CEO Peter Van Etten, reflecting on the years since diagnosis, on how getting involved with JDRF had helped us so much and on my hope for the future. I guess Peter liked it because he forwarded it. To the entire JDRF world email (this was pre-website days). And those folks forwarded. It was my first true experience of something going “viral.” I don’t have that email anymore. I kind of wish I did. I was still so dewy-eyed back them; it would be refreshing to dip back into that innocent pool of hope. (Anyone have it? I know Philly used it in their gala guide. Would have been about 2002?)
Time ticked on, and each year I’d try to reflect and remember. But it got hard. The teen years were horrible for us. Up front I must say this: Lauren is a vibrant, dynamic, caring, interesting and intelligent young woman. But something about the combination of her, diabetes and me just got beyond dicey in the early teen years. We battled. We made up. I lost sleep over what the heck could be going on with her organs. She landed in the ICU. She struggled to figure out why she could not just accept it already. We cried with each other and yes, we cried at each other. At one point she was so upset with me she refused to even look at the now-best-selling book on raising a child with diabetes I wrote. (One day she finally did. “Mom! This book is dedicated to me!” Umm, yeah, it is.) As she grew older and wiser, she started to question the whole hope thing more.
“I just don’t know if I can handle what it takes to have a child, Mom,” she told me more than once. “Do you think it’s possible to find a man who will love me and my diabetes unconditionally?” she asked me other times. “I mean,” she said with her usual flair for comedy even in times of great angst, “Am I going to die alone? Alone . . . . with cats?” (She cracks me up).
But she – and I – forged onward. In those years she testified before Congress twice, was chosen by our town to carry the Olympic torch through the town center, spoke at the DNC in 08, did every Promise to Remember Me meeting that was to be had, chaired JDRF’s Children’s Congress, appeared at a guest on CNN live twice, helped newly diagnosed kids any time there was one in our area, became a leader at her diabetes camp and more. Never did she do it expecting anything. And never did she be anything but hopeful to those kids and honest to those elected officials who could help fund research. For the most part, teens want to be perfect. She always admitted she was far from it when it came to diabetes. I always found that remarkable and brave.
So for her 10th anniversary I wrote another widely circulated note about the shift of hope in these five years and my determination to keep up the positive battle. Since then, she started driving, gave up diabetes camp (after 11 wonderful years), went on a two-week summer leadership program without me OR a nurse (!!!) while in high school and came back alive and well, fought diabetes more, tried to figure it out more, moved 500 miles away to college and slowly began to thrive.
So what am I supposed to say at 14 years? I can no longer blindly promise her a cure in (choose your magic number here) years. She’s not home for the walk so I cannot hold a giant party. She has enough Coach bags but I will send her a lovely gift (and her sister too. Siblings live this as well if you ask me).
I guess what I can tell her is exactly what that wise endo told me when I didn’t want to leave the hospital: there’s a good, rich and interesting life ahead of you, Lauren. You’re doing so well in college. Your grades are higher and your a1c is lower. You have more friends that I ever thought was possible. There are quite a few people out there in the world hoping you’ll choose to run for office one day in the future because you are that kind of leader. You are a great sister to Leigh and cat-auntie to George of the Jungle. And you, my dear, are now the one providing hope to me; hope that there will be a cure or at least better treatments in the future.
You see, Lauren is interning at the JDRF government relations office. And while I am still deeply involved and totally up on all that goes on in the research world, Lauren told me the other day how very interested she is in some of it. Like the APP. “You know, Mom, I’d consider it today, really. The idea of not having to think of diabetes every single minute? Come on, Mom! That should give you hope.” Hearing happiness in her voice when she described it somehow renewed it for me.
And she’s right. So while we won’t be together today, I’ll be thinking of her all day. I’ll light a candle and I’ll make a wish. And then I’ll get back to work. Because next year is a big one. Lauren turns 21 and her diabetes turns 15.
And this D-Mom’s got big plans. Very big plans.
DOC – feel free to add your Happy Diaversary wishes to Lauren below. I’d love her to feel some extra love today!
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