DO IT: Finding some sanity in this crazy D world

August 14, 2011By 12 Comments

Sometimes it takes a little extra somethin’ from somewhere you just don’t expect to get you through this diabetes life. One day, it might be a lovely post someone leaves on your facebook page. Another, it might be experiencing some success in a fundraiser to help fund research. Another, it might just be a good friend listening (and providing the really good coffee—thanks, Anne).

For my daughter and for me, all that has popped up when we needed it. But recently, nothing’s been quite doing it for us. She has struggled with her daily diabetes routine (and who can blame her. How buzz-killerific is Type 1 when you are a college kid?) And for me, it’s been about keeping up the hope. When she was little, it was easier to be hopeful. First, I was naïve. I thought her diabetes would be at its most difficult when she was a little one (ha!). Second, I was lucky enough to hold some motivating and inspiring volunteer roles in the diabetes community. Now I know these diabetes years are tougher, and I’m at an in-between phase in my volunteer life (not by my own choice; life goes in directions you just have to go with sometimes).

Lauren (on left) and her sister. We thought it was hard with D then, but the later years have proven to be more challenging.

And so, when her Endo suggested she spend almost a full week this summer in a diabetes refresher course, I didn’t know if I should jump for joy or sink deeper into my funk. I did know right away how she felt about it. “You’ll drag me there kicking and screaming,” she told me and the world. To make it less stressful, she (as is her practice) started to poke fun at it, telling anyone and everyone she was being sent to “Diabetes Rehab.

So when we left our house well before 6 a.m. last Monday to head into Boston for our first day of the DO IT Program at Joslin, I wasn’t quite sure what to feel. Two things struck me almost immediately. First: who the heck are all these people on the road this early in the day? I’ve been a self-employed writer since 1987 and my commute is literally down the hall, so I kind of figured leaving for Boston that early, we’d be alone on the road. Holy Bat Rush Hour. I had no idea.

Second, Lauren was not complaining. Okay, she wasn’t jumping up and down either, but she wasn’t complaining.

We dragged ourselves in and signed in. We looked over the schedule for the four days and found something that motivated us on the last day: a diabetes jeopardy match. “We’re gonna kick a##!” I told my daughter. We high fived, giving each other something to look forward to. Then the program started, and it started fast. By 11 a.m. that day I texted two close d-world friends: “I think this is going to be really good for us.” I was right.

DO IT is not really a rehab, but this session of it is designed for young adults who have had diabetes for a long time. (Please not here that to respect the privacy of those who attended, I’m going to be extremely vague about personal details and switch up genders here and there to protect privacy). There were a few exceptions in the group – one adult who was only diagnosed a few months ago but has a significant other with Type 1 who came with her (and she was told, right from the start that this was more of a “PHD level class,” and she should take a lot of notes. My daughter was probably the youngest. There were a couple of other college age kids – one who was there alone because she realized she needed some separation from her mom when it came to diabetes (and who clearly had a few things in common with us. At the end of the first day she quietly asked us something important: Could she be on our diabetes jeopardy team? Clearly that young woman knows how to bond!), another who was with his mom and it seemed his mom was still very much involved in his care. There were a couple of moms with Type 1 who were trying to figure out balancing life, work, babies and Type 1 (I particularly liked their spouses – by their side the entire time), and a man who had recently changed from being a working professional with Type 1 to being a full-time stay at home dad with type 1 and kids. He has found the stress of full-time parenting along with the time demands have made his diabetes much more difficult to lasso than it ever was in the working world. (Go figure.)

All in all, it was a group that could pretty much get on the same page. And so, for days, while we took part in lectures on research, lessons on food choices and managing eating in every situation, exercise sessions where they checked bgs every 10 minutes to show you which kind of exercise spikes you and while plummets you (wouldn’t you know, it’s different in just about every person. Thank you, diabetes demons.) Each person met each day with the endo, a nutritionist and an educator. Every blood sugar was examined; every carb decision reviewed to see if the insulin dose matched. It was almost like a cross between diabetes camp and what we went through when she was newly diagnosed. Was it a long day? Good Lord, yes.

But each hour of each day I watched my daughter and saw something happening: she started taking personal ownership of her diabetes. The first morning each person was asked to tell the group who they were and what brought them there. My daughter, usually more talkative than me, was the last to pipe in. But by half way through the second day, she was speaking up, chiming in, debating and yes, cracking jokes.

Because here’s the thing: my daughter could probably stand up in front of that group and teach almost every lecture. But just because she can recite it, does not mean she has ever truly owned it. And each day, each hour, each lesson, tiny bits of what she has known for a long time began to click for her.

There were things, too, that we did not know and were surprised to learn. Like, we never knew that glucagon is not effective when you have alcohol in your system. (Since she’s a college girl, this is vital stuff to know. And while one mom almost fainted when I sat by calmly as my daughter asked about bolusing for “jungle juice”, I was rather proud of her and me in that moment. Why not be honest? That’s what I say.) And certain fruits are not as good a choice as others. (I mean I kind of knew that but never knew the vast range of what each fruit can do).

As all this sunk into my daughter’s head, she was, at the same time, listening to, learning from and bonding with, the young adults around her. It might sound crazy, but it gave her hope to see that they all were struggling too. Hope because they’re all struggling but succeeding. For the first time ever, my daughter said to me “Hmmm. Maybe I will get the guts to have children some day.”

So we awoke to a 5 a.m. alarm every day and drove in through that surprising traffic. And every night as we took forever in the traffic to get home, we talked. Well, she talked and I listened. And each hour of each day, I felt the responsibility shifting from my shoulders to hers, and realized that until this time, it really had not. And it needed to.

Her incredible Endo, who I will name here because we truly feel he is the bee’s knees, Dr Howard Wolpert, was wise beyond belief. On the second day, feeling a surge of motivation, Lauren told him she wanted to go back on a CGM (she’s been off it since 2008). At first he said yes, then he sat back for a moment and said, ‘You know, if you go on it now, you’re going to let it do the work. Nothing can replace the hard work of paying attention to your diabetes (yet). I think we should wait until December and see how you are doing then.” Lauren realized right away: he was completely right. He also helped her study her labs, understand what each one means and take a personal role in knowing them and working on them. (Now she knows why I used to nag her to take her meds. All she needed now was a Vera Bradley pill case and she’s good to go).

Finally, the last day came, and the time for diabetes jeopardy. But here’s the thing: they were running behind and had to cancel it (I still think it is because they realized the team of my daughter, me and our new friend were unbeatable but we’ll just leave it be). And while we joked about being peeved, it was fine. We may have needed that fun idea to get motivated to start, but we didn’t need it to feel complete in the program.

The last thing that happened is Lauren met with her endo and CDE and set up a regular plan of communication. Having figured all that out, Dr. Wolpert looked directly at me and said this: “It’s okay mom. Your girl is really to fly.”

It still makes me a bit weepy to even think that, but he’s so right. I will forever be here for her in any way she needs, but she’s ready  to get out there and DO IT. And by that I mean do it right.

Lauren -- in the royal blue -- with some of her fave summer friends. Ready to fly.

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Comments (12)

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  1. Martha says:

    M-

    You are incredible! Your words are amazing. You and Lauren inspire us all. Caitlin I can see is getting to that point her life and this would be an amazing opportunity for her too.
    Thanks for being you and sharing with all of us.
    Martha

  2. krisfitz says:

    When our little guy was diagnosed (14mos), people tried to be encouraging by saying, “Well, at least he won’t fight it when he’s older, since it’s all he’ll ever have known.” Hmph. Thank you and Lauren for having the courage to say it how it is and inspire us with your honesty.

  3. Donna Washburn says:

    Moira, thank you so much for sharing all of this. My daughter is almost 19 and would greatly benefit from a program like this. Your words are very encouraging. However, you also wrote this on the day of a funeral for a 19 year old boy from the college where I work, who died, alone in his apartment, from Type 1 diabetes! I had reached out to him over this past year to see if he needed any help, being so far away from home (South Dakota to Florida) but he was very shy and a loner. I’m glad you brought Lauren “kicking and screaming” to the program – I wish I could have done that for this boy. I only hope that the work we do for our kids and JDRF will find a cure soon, so 19 year old kids can live a long and happy life! Donna Washburn

  4. Moira – you are awe inspiring. Although I do not have a diabetic currently in my family, my grandfather passed from this disease. Since then, I have done my best to be an advocate within the healthcare system – a system I have worked in for 25 years. Thank you for your voice, and for sharing the experiences of yourself and Lauren, and those you are involved with. Your words will help people like myself to continue to educate the Policy Makers and Providers the true value of listening, educating, and engaging “all those who are involved and connected”. I am “passing the word” to my many friends that are dealing with Type 1 diabetes in their lives and know they too will find inspiration in your words. Many, many thanks to you and Lauren.

    Maria

  5. shannon says:

    thank you for this post! this sounds like a wonderful program! i got tears in my eyes when i read she was “ready to fly”. you gave her those wings!

  6. Caryn says:

    I finally made it through this to the end after the first teary eyed attempt. (hope the warranty on my new laptop covers submersion in tears) You have such a wonderful gift in your wisdom and your writing. Lisa graduated to the “adult” endo and has been going to the appointments alone. She asked if I would come to her next appoinment in October after her most recent A1C was almost 9. I am going to ask OU if they have a “diabetes rehab”. After all, they are a teaching hospital. My Mom even went to inpatient “diabetes rehab” for two weeks in 1972 at age 31 after having diabetes for 17 years. It really helped her back in the day of no meters or pumps.

  7. Betty says:

    My daughter has had Diabetes since she was 3. Born in 1969 and at the age of 41, she is married with two beautiful children. We went to the Joslin when she was first diagnosed and again when she was going through adolescence. If not for the Joslin, I couldn’t imagine us coping. Its the best place in the world (and they do come from all over the world) anyone could possibly go for education and support.

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