Wishes, diaversaries, and reasons to hope

October 28, 2011By 23 Comments

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?”

Lauren at our Beach Club that last carefree summer when a snack was still just a snack. (Although one might note that a tutu really IS still just a tutu)

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.

From an early age, Lauren liked to include some pampering in her "Diaversary" celebration each year.

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.

Lauren (left) loved sharing walk day each year with her friends, and still does.

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!

The intern in action.

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Comments (23)

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  1. Jennie says:

    I’m just in tears…wow! I know you are so proud of Lauren! I’m proud of you, too! Thanks for putting into words so many thoughts and feelings about life with diabetes. And kudos to Lauren! What a strong young lady!

  2. Robin Baldwin says:

    Wow what a remarkable woman you are! Tears welled up reading this. My son is 13yrs got diagnosed at 10yrs. I can relate to your mom’s story of you being in the hospital and finding out. I thought my son had a bad case of the flu, till his eyes were rolling in the back of his head and he couldn’t walk. Rushed him to er and after being rushed right to icu was asked the same question your mom was. My reaction was a melt down and me sobning and asking the dr’s if they were taking my son away from. I felt like such a bad mom, that I failed my son and “let” him get sick. I was assured he will live a happy normal life with some adjustments. We are still learning and I won’t let him stray far. But reading your moms story gave me inspiration that my son can be as strong as you have. He can be away from home and it will be alright. I applaud you greatly Lauren. Your one amazing, bright, strong willed, determind and dedicated young lady. My hat off to you with such appreciation and much love for what you are doing. (Thanks for listening to part of my story. I have NEVER told anyone the part of what the dr said and my reaction) thanks sweetie and bless your sweet soul!!!

  3. Donna Washburn says:

    Have a happy day Lauren! My daughter Sammy was diagnosed 10 years ago tomorrow! I cried for the scary unknown element and Sammy cried because she didn’t think she could go Trick-or-Treating! Boston’s Children’s Hospital took the kids on all 10 floors for candy and she was discharged on the afternoon of Halloween, so she got to go around the neighborhood as well. It was at that moment that I realized she could still lead a “normal” life and deal with diabetes at the same time – we just had to be prepared. The list of carbs for Halloween candy, sent home with us from JDRF, helped considerably! Your family is wonderful and I thank you for the hope to send to all of us! Donna Washburn

  4. Anne says:

    Lauren, I hope you make it a good day! Your Mom has all the words, she said it all. Thanks for being there for Jeff, remember when you helped him with his pump sites? You are such a great kid, it really means so much to have you leading the way, and doing well, struggles or not. Keep it up, you are awesome!
    Love you<3

  5. "Dr Dude" says:

    Dear Lauren, here is wishing you the best of wishes on this oh-so-complicated day. You (and your mom, and all of us) have grown in such amazing ways since that fateful day. We our so proud of all you have done, and excited for the future. Sincerely, “Dr Dude”.

  6. Annette says:

    Lauren & Moira,
    You both give me hope for the future in this newly diagnosed diabetes world. We feel so lucky to know you! Keep up the great work you are BOTH doing! You both are truly inspirational!! Know it and own it! We are with you on this journey. Cheers to both of you and to all of us! A wish for a better tomorrow. Emma at 8 years old thanks you and we will both do what we can our end too!
    I can only imagine what your Mom is planning for next year! Right on!!!

  7. Julia says:

    My daughter is 2 weeks from her 1 year anniversary. I cried my way through your post. I cried my way through last night at home after a long field trip with my daughter – 9 years old. I was feeling so sad that she had to consider so much more that all the other kids in her class all day long. She never complains and never seeks anything in return for her hard work. She has an endlessly positive spirit. Her acceptance inspires me. I emailed my friend, another T1 mom, after my small pity party last night and she sent me this post. It is a beautiful tribute to the spirit and strength of your family. It is inspiring and hopeful. The worry about ….. will she be able to go away, be in a sports team, go to college and manage – it is good to hear those fears reflected back from other moms. Thank you. But it is also good to be reminded that it is the small daily platform and the circle of strength we build that helps them fly someday.
    We wonder – do we spoil her too – because of all she goes through – an overpriced halloween costume, “real” Uggs from her Nana, more patience than we might give our son- but really it is the counter balance. As you said too – she isn’t spoiled – she is compassionate, wise beyond her years, as brave as they come, grateful. I ordered her a necklace for her Danniversary – it is engaved “My hero”. My son has a watch engraved on the back “Patient one” (for all the time he has waited and watched and cared and yelled at us for her getting more attention than him this past year). Someday maybe we will graduate to Coach bags to mark the years. I can’t wait to read what your 15 year brings. All my best to you and your family!

  8. sean stanford says:

    Very Proud of the remarkable young woman you’ve become
    Hope you have a great day
    Love you

  9. Julia says:

    And wonderful wishes and kuddos to you Lauren! You truly are an inspiration!!! Keep up the amazing work!

  10. Dawn Ripley says:

    You guys never cease to amaze me!! I remember the day every year. I was dx’d on Halloween 1977 at age 6. I remember being rushed to the hospital by a neighbor because I kept fainting and someone wrapped me in a blanket and rushed me to the hospital. I remember hearing them say I was dying and at the time I REALLY thought I was. but the doctors at Salem Childrens hospital reassured me that I wasn’t dying, but that “all that candy I had just gotten, I would never be able to eat any of it ever again”(times were different then with diabetes) So my Dianniversary is celebrated every year by people eating candy and all kinds of sugary treats. So to hear you tell your “story” makes things seem not so bad.

  11. Katie says:

    Happy Day to Lauren.

    What a great post. We’re almost 18 years in, and I admire all these people (kids and adults both) who cope so well with diabetes life.

    Moira – I’ve always been sort of embarrassed that I did NOT fall apart when my son was diagnosed. I’ve never known why. I knew it was bad news, but I just kept putting one foot in front of the other. I went into stone cold automatic overdrive… But I’ve had some spectacular melt downs in the years between then and now.

    Here’s to the Improvements in Care – who knew we’d even get this far?

  12. Lauren says:

    Its been an interesting 14 years mom, but I’m so lucky to have such a great mom in my life to help me through it all. I can honestly say you’re the only person I can speak honestly and truthfully about my diabetes all the time. I’m not embarrassed to cry about it in front of you like I am with everyone else. It may seem like a little thing but it means a hell of a lot more than that. I would probably not be alive right now if it wasn’t for you. And I most certainly wouldn’t have the passion and drive that I have for everything in my life if you hadn’t raised me to be such a go-getter. I may not always show it but I really appreciate everything you do. Thanks mama <3 love youu

  13. shannon says:

    lauren – congrats to you on your 14th d-versary. it sounds like you are well on your way to a wonderful future. also, looks like next year’s celebration’s gonna be a biggie!

    moira – thank you so much for sharing. i found the story of her 8th birthday especially touching. my daughter was dx’d 2 years ago, and she’s turning 12 next week. we are heading into the touchy teen territory and i look to the moms who have been through it and are currently going through it, to let me know it will all be okay on the other side. so this post was very timely for me. thank you.

  14. Michelle says:

    Happy Diaversary Lauren! We’re getting ready to celebrate Charlotte’s 6th diaversary on Monday (yes…she was diagnosed on Halloween)…and will follow with our walk to celebrate again on November 12th! I agree that having the Walk fall around the Diaversary has been a fun sort of “built-in” way to celebrate! Charlotte’s only 8 years old so we’ve still got a long journey ahead of us with some of the battles you mentioned to “look forward to”. Moira and Lauren you are both amazing ladies! I’m glad to have you fighting this fight with us (wish none of us had to though….maybe one day).

  15. Hallie says:

    Wow. I’m misty-eyed. I get it.

    I remember sitting in a dr’s office – in tears- telling him “I TOLD YOU SO”. I remember not wanting to go home after 5 days in the hospital. They were so kind and didn’t force us. Just encouraged us that we could do this.

    And we have. And, I think we’ve done it well. Because we are LIVING. and LOVING. She’s happy. And healthy.

    We hope. I have a hard time thinking about diaversaries apart from one another. Luckily, we have awhile. :) We are still so new to this. This year will be 3 years. And it will mark the point where she has lived longer WITH diabetes than she has without it. *sigh*

    Lauren, Happy Diaversary! 14 years is a huge accomplishment! I hope that my Sweetpea has the same outlook and drive that you do when she’s your age. I hope she still HOPES. Well, I hope she doesn’t have to anymore!! Celebrate this day! You’ve earned it!

    You ALL have!

  16. Kelley Cerasuolo says:

    Hi Lauren & Moira,
    I have only recently begun reading your blog because a mutual friend named Dr. Dude sent me the link to your blog. What an inspiration you both are to this community!!!!
    Moira,I have been so drawn to the way you so masterfully write about the experiences you have had as Lauren’s mother and the unique way you have turned this disease on its ear by sending an incredibly powerful positive message into the world.
    The emotions you are able to so clearly convey leaves me feeling privileged to witness how you have channled this infinately complex disease into a message of hope for patients and their families.
    Lauren: You are such an inspiration to us all! You must make your mom so proud! Happy diaversary- here’s to another great year of overcoming obstacles and living the life you choose to live!
    Take Care! Kelley Cerasuolo

  17. Meg says:

    Lauren, as you mark your anniversary, my wish for you is a cure. Pure and simple. In the meantime, you are a wonderful example of getting out there and living life! Congratulations!

  18. Beautiful piece, Moira. What doesn’t kill you makes you a better writer. :>) Happy, what’s it called, Diaversary? Love and health to you, Lauren, and the rest of the McCarthy Stanton crew.

  19. Debbie says:

    Happy Diaversary!
    You made me cry and laugh all at the same time. May you have many wonderful years ahead of you! xx

  20. krisfitz says:

    Lauren – Hope to get the chance to meet you at JDRF GR weekend next March! (Will be there from WA.) They’re lucky to have you.
    Moira – I love, love, love your response at the end of the hospital stay. I said something pretty similar – our 14 month old had picked up gastroenteritis in the hospital by the end of our week-long stay (on top of the fresh D diagnosis), and I almost wanted him hooked back up to the IVs at that point. Instead we went home (afraid to stop on the way home) and got online to see what we could find… :)
    Thank you both for sharing so directly and honestly!

  21. Moira, it’s late but still congratulations on the diaversary please give your daughter my very best wishes. Earlier this year I celebrated 39 years living with type 1, and I do see these as celebrations. Getting through another year with problems despite all the various balancing acts I do.

    I sincerely hope you won’t be celebrating in 25 years time, and that way before then we’re all celebrating for a cure.

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