A year ago this week, my daughter with diabetes and I were at what she chose to call diabetes rehab, but what the world calls the Joslin’s DO IT program. At the advice of her endo, Dr. Wonderful, we dragged ourselves out of bed at dawn and fought the commuters to get to Boston by 7 a.m. each day for a long day of diabetes education, support and information.
Now, a year later, I thought it would be good to reflect on how – and if and why – DO IT helped my daughter (and me) move forward in our lives with T1D on board.
A refresher on what brought us there: Lauren had finished her first year of college. I’d send her off to school knowing she was not…well … in optimal control of her diabetes. (Okay, she was a hot mess. So what? It happens and we refuse to be ashamed of it). Her new endo (her idea to switch to an adult one before college; wise girl she is), had encouraged me to let her go and live her life and see what happened. She responded well the first semester, bringing he a1c down a bit and trying harder. But when she returned home for summer, she was back at that place where she just did not want to deal with her diabetes. At her endo appointment early that summer, Dr. Wonderful told us about DO IT (he came out into the waiting room and told me Lauren was registering for it and would be going, on his suggestion). Lauren wasn’t happy about missing a week of work and summer and life to do this, but she signed on. And asked for input. And off we went.
Now, a year later, we will drive into Boston again on Friday, this time for her final endo appointment before heading back to college for her junior year. I can honestly tell you: it’s the first time in years and years that I have headed in with her with barely a single worry in the world (well, barely a single worry in D-world standards. T1D does not allow for NO worry, but you know where I’m coming from). Lauren has been loving her IBGStar meter and logging more bg’s than I’ve noticed in years. But she’s not the only one who has grown in this D-life. Let me share.
*Checking for info; not to get someone off her back: I realize now that for many years, the ONLY reason Lauren might have had in her head to check her blood sugar was to get me to shut the heck up, get the school nurse to stop nagging and just make everyone go away. I don’t know this is true: I’m just guessing. But is strikes me now: even though at that time I felt I did not care what her motivation was so long as she did it, could I have worked at finding a way for her to want to check? Or, if I had just been a bit quieter, might things have resolved sooner? Recently she told a friend what goes through her head now, and I was delighted. That’s really true, and I think DO IT helped her get to that point where she knows: The only person that truly matters in all this is her. She should—and does – pull her meter out because she wants to feel good, to do well in work and school and to stay healthy. Now, I’m not saying she is at a point of checking 10 times a day: I don’t know if she ever will be. But I am saying that she has enough info to know her trends, to stay relatively on track and to have some good information to discuss with her endo this Friday. Magnificent progress. I think she really felt that after this endo appointment. And while the doctors and other experts at DO IT stressed this, I think she heard it a lot from the other folks attending with her. She got some peeks into the future and saw how she’d like to be one day (and how she would not like to be) and emulated. Excellent.
*A mom who truly let’s go: Okay, I’ll say it: I was part of the situation (I don’t want to say problem because life with T1D is what it is, and we work through it). Out of true love, caring and yes, desperation, I was a nagging, worried, easily-freaked-out, non-trusting mom. All I wanted in life at that moment was for her to be relatively healthy. And the notion that this might not be true ate away at my very core. It was terrifying and beyond frustrating. But instead of trying to let go a little and see if she could grow into it all, I held tighter. And tighter. Sure, I sent her far away to college and I worked at letting her live, but deep down I was scared. And I worked through that fright by driving her almost out of her mind. At the very start of DO IT I knew this was true. I bit my lip and – unlike me in almost any situation – tried to stay quiet. At one point Lauren even said to me “Mom, seriously: it’s okay if you talk.” But I wanted it to really come from her, and for me to learn to be a little quieter.
It has taken me some time over the year since DO IT, but I am happy to report I almost never ask Lauren what her bg is or if she took her shot. And guess what the result is? Mature, calm conversations started by Lauren about what is going on with her diabetes and what can be done about it. How about that? My letting go, I got more in return. File under: practice what you preach, Moira.
And look: Lauren and I have always had a good relationship. But this is making it stronger. As she becomes a true adult, she will know she can turn to me for advice and input. She knows I’m here. And I know she’s going to come to me when she needs to. It’s really quite wonderful.
*There is no “all or nothing” in T1D daily care: I used to think – and I know a lot of other folks in the T1D world think – being “in control” (I kind of hate that phrase. Like if your are not checking a lot or you are not logging things your eyes roll back in their sockets and you start maiming small animals or something. Gosh.) Anyway, people think “being in control” can be charted with a table. Like this: Patient A is checking eight times a day and blousing for each meal. Basals are checked every six weeks and all carbs are counted. Patient A is in control.” But I now believe that “in control” looks different for every person with T1D, and might even look different for that person at different times in their life. Lauren and her endo (and the DO IT team) found something that means “in control” for her. It’s been tweaked over the year, but trust me: it looks almost nothing like what I would have set up. And again I say: it’s working. This has been wonderful for Lauren. No longer does she stare up at a giant mountain of “incontrollness” (I just made that word up) and think “Nope. Cannot even take the first five steps up that monster!” Instead, she has a plan – and a hill to face—that looks doable to her. And when it does not look that way or when she hankers for something steeper, she seeks it out. I know we all say “people with diabetes are like snowflakes – each on unique,” but I now add to that: Each person is like a snowflake that never melts; it just changes its shape and look and chill factor constantly. DO IT taught me – and Lauren – there is no all or nothing. And knowing that removes the option for failure. Again I say: excellent.
*There still is no cure for diabetes. I wish I could say we now feel like “la la la diabetes is FINE!” But we don’t. We don’t sit around and cry about it. But I’m still working hard at finding better treatments and a cure (have you donated to my RIDE yet?). Lauren is still volunteering down in DC for JDRF and wondering about her future. But we’re doing it in a way that feels a bit better: knowing that we can DO IT while we do that. The other day, Lauren had just checked her bg and taken a shot while out to dinner with me. I didn’t say a word and she did what she had to do matter of factly. Then she looked at me and said this:
“You know, it’s not like I don’t get tired of all this anymore. I still do. Because here is the other thing I realize, Mom: You can try as hard as you can and do everything right and guess what? Diabetes still doesn’t go away. It’s infuriating sometimes.”
To that all I can say is this: I’ll keep trying to make life better. You keep knowing that this is a fluid thing. Days will be great; days will be a challenge. Weeks will fly by; others will seem like a diabetes durge. There are so many things to look forward to the the coming weeks and year. You’ll turn 21 (And taste your first sip of beer? Ha.) You’ll be working on CSPAN covering the presidential election. You’ll hopefully find– and take part in — an amazing internship. You’ll be a Maid of Honor for your sister and gain a brother in law. You’ll live in an apartment, not a regular dorm. You’ll take an international vacation. And so much more.
But just like we learned a year ago, Lauren: You can DO IT. And even if they did cancel the Diabetes Jeopardy contest at the last minute (because they knew we were going to dominate), I’m glad we did it together.