Still Lending a Hand

Our family has experienced several turning points over the years when it comes to my daughter taking on increased responsibility for her care.  To us, each of these has been a big deal.  She can check her own blood sugar!  She can troubleshoot enough to be left alone at a birthday party!  She can count her own carbs at a restaurant with friends!  She can change her own site!  She can go away overnight! The list of these moments is long.  For some families, this list doesn't exist at all because their kids were diagnosed at an age when they naturally took on all or at least most of these tasks independently from the start.  For others of us, it's been and continues to be a long incremental journey.

Sometimes I feel weird, or even guilty, that I still help my daughter with her Dexcom sensor insertions or that until a couple of years ago I did almost all of her site changes. The little voice in my head nags,  'She's a teenager for goodness' sake- she should be doing all of this by herself.  Other kids are doing it by 8.'

But if I step back and reflect on how we got here, it feels okay. 

When she was diagnosed at 13 months old, we did EVERYTHING.  Obviously.

Then around 3 she wanted to help...as many 3-year-olds want to do.  It's the 'I can do it by myself 'age and we took full advantage.  She learned to use the lancet and apply blood to the test strip.  She learned to read the number on the glucometer out loud.  She learned to gather all of the supplies for her site changes.  She was in charge of separating the various wipe packets which come in perforated pairs of two. She also spent quite a bit of time taking care of the diabetes needs of her dolls and stuffed animals who, occasionally, also had to count carbs at tea parties, check their blood sugar or drink juice boxes.

By the age of 5 she knew how to use her insulin pump, with supervision and an adult counting the carbs. She knew to drink a juice box if her meter said she was low and to wait 15 minutes and check again before she could go back to what she was doing - again, with an adult around to support her.

In early elementary school she learned how to count and bolus for a simple snack like goldfish crackers or pretzels so that she could go to a friend's house after school.

If she WANTED to do it, we figured out how to make that happen.  If she didn't want to, we didn't push. 

She now, of necessity, knows how to do it all. And yet, still, I help if asked. Diabetes is a huge undertaking. For now, the least I can do is give her a hand filling the insulin cartridge if she has to do a site change in a hurry, or be an extra set of hands for the awkward Dexcom insertion.  She's going to have to do it all by herself soon enough.

What to Say?

We currently have more than one family in our lives with a recently diagnosed blood-sugar-challenged person. While we're hoping this isn't becoming a trend, I'm working on my own initial reaction conversation, and reflecting on some I had 15 or so years ago.

We were fortunate to be hooked up with a local group of diabetes parents shortly after my daughter's diagnosis. When I called for details about their meetings, the group's facilitator - both a CDE and a diabetes mom herself - stayed on the phone for almost an hour, offering support and encouragement, with lots of, "slowly but surely it'll get easier," and "it sounds like you're doing well, considering how little she is and all you've been through," and "I'll bring you some resources when you come to support group." She then asked if she could have a member of the group call me since this member's daughter had been diagnosed at about the same age as mine. The phone rang a few days later.

"Oh... I'm so sorry this is happening to you," the well-meaning mom began, "Having diabetes is terrible. It's the hardest thing we've ever done."

We had other conversations with fellow diabetes families over those first few months, some from that support group and some from other parts of our lives, but I think those two interactions mark the extreme opposite answers to the question, "What should I say to the newly diagnosed?" Should I assume they're in a place of despair, or should I begin with hope?

Talking with the "diabetes is terrible" mom wasn't all bad. Simply chatting with someone with similar experiences was helpful. But I was left wondering why, 3 weeks in, I seemed to have a better level of acceptance of my new normal than she did after a few years.

So in my interactions, even on days when I'm feeling like diabetes is particularly terrible, I've decided to aim for encouragement: offering and answering questions, listening, and providing information or resources if I can.  If the conversation flows towards the terrible parts, I'm not opposed to supportive commiserating, but want the end message to be, "but we survived those first months, we're surviving now, and you will to."

I don't think there's anything much more helpful than a real live person saying, "I've been in your shoes. I'm still standing, and even thriving. It's going to be okay, and I'm here to help."

Diabetes People

We were very fortunate to find a parent support group shortly after my daughter's diabetes diagnosis. People in that group were also involved with the local JDRF chapter and I got involved there too. Once we got our heads above water with the help and support of both of those organizations I found myself able to turn around and help others. I encouraged the next round of newly-diagnosed families at the support group meetings. I got involved in planning and running a local JDRF walk. In the three years after diagnosis, personal contact with other 'diabetes people' was a big part of my life.

Then, because of a lay-off and a subsequent job opportunity, we moved back to the area where I grew up. We continued to participate in JDRF walks, and I did help with walks at the elementary school, but my contact with our local chapter was minimal. There was not a parent support group in the area. We were fortunate to know a couple of nearby families with T1D and so had, and continue to have, an informal network of information and support. I found the diabetes online community, and there found both personal support and a way to be supportive of others by starting this blog. For a while that was enough.

Now, though, I'm feeling a pull.

I'm still incredibly grateful for those moms and dads I met during the first months after diagnosis. Having those conversations provided a framework for how we still live with diabetes today. There's nothing like sharing stories, laughs, information or tears with people who have faced the same challenges.

In lieu of New Years Resolutions, I tend to think of something I'd like give some extra energy to over the course of the year.  Some years it's practical, like learning new recipes or starting a vegetable garden. Some years it's more social, like sending thank-you notes for even the littlest of gestures. This year?

I'll be looking for ways to spend more time with other 'diabetes people.'



 

I've Been There.

What would make a new diabetes diagnosis easier for people?

The question has been rattling around in my head for a couple of months now.  Two events triggered it.  First, a friend's 8 year old relative was diagnosed. That event brought up all kinds of memories for me, and thoughts about what it must be like for them to enter this strange new world.  Also this winter, my dad was hospitalized for a very different type of issue, orthopedic in nature, but we had the familiar experience of being in a medical setting where people were speaking a language they  knew well and with which we were unfamiliar; and of being in a situation in which many aspects of life changed in a heartbeat with a long adjustment to follow. 

In the first few days after his hospital admission, my dad talked often about both staff and friends who had shared their experiences with his particular diagnosis.  A doctor had experienced the same injury and told of his recovery.  A friend said it took him at least six months to get back to normal.  A therapist knew someone who had benefitted from a particular kind of treatment.  There were, of course, conversations with the professionals about scan results, and medication options.  There were prognosis trajectories to be understood and discharge plans to weigh.  But in the end, it seemed particularly important to the patient to hear the stories of people who had been in his shoes. 

We were very fortunate that my daughter was first treated for diabetes at an excellent hospital and that we were able to return there for her ongoing care with an exceptionally knowledgeable team.  But what do I remember of that week and of the weeks following?  I remember talking with the nurse on the unit who had diabetes and who said  many reassuring things.  I remember every little word of practical and emotionally encouraging wisdom from our first CDE who also happened to have diabetes.  I remember being incredibly reluctant to attend a local support group and then feeling incredibly comforted once I got there. 

Several years ago, an eight year old girl we love was diagnosed.  The day after she returned home from the hospital, we were there.  We did not bring reading materials (well maybe a Calorie King book).  We did not discuss meter brands, or insulin to carb ratios.  We brought a set of colorful measuring cups, Clifford juice boxes, sugar-free jello jigglers and ourselves.  And we sat in their living room with them and listened. And we told them our stories.  We let them know we'd been in their shoes. They could see we'd made it out of the woods. 

There are few more comforting words than, "I've been there," especially when they're followed by, "and I promise it will get better."  This kind of support happens sporadically, with JDRF's bags of hope and with other, more local programs, but somehow even though we were at a major hospital in a big city, we were not formally hooked up with any peer to peer support upon my daughter's diagnosis.  How could that kind of reassurance become a bigger part of more people's stories?

The Screen as a Diabetes Management Tool

This article, Tech Can Be a Boost to Teens' Diabetes Self-Management, crossed my twitter feed this week.  It lists five specific technologies used by kids with diabetes: social networks, texting, mobile diabetes apps, diabetes-focused websites and pump or meter software. Our household's experience mirrors the positive results of technology on diabetes management found in the study.

The most used technology for management in our family is texting.  I get texts from parties and visits to friends' houses.  A mystery food has appeared- here's a picture and would I help guess the carbs?  She knows she'll be tired when she gets home but wants us to remember to do site change since she's down to 8 units.  She's low and has treated it but needs a virtual hug.  She's awake the morning after the sleepover- I can enjoy my coffee in peace. Texting is a quick and inconspicuous way to ask me for advice, help and support.

We do a little less with software. When we get around to downloading the Dexcom, looking at those numbers together does help her buy into any changes we need to talk about making.  She can see, for example,  the daily spike after breakfast and (at least for a few days) will be more likely to bolus before starting to make breakfast instead of as the food is entering her mouth.  This calendar year will bring 'Dexcom Share' to our family's cell phones, which I imagine will also increase awareness and communication. 

Social media is, to me, the most interesting tool.  It's where the intangible boost comes from. My daughter will share memes with me from accounts she follows on Instagram.  I'll send along blog posts or let her read funny tweets I come across.  She's not learning any specific treatment tips from her Instagram feed. Instead, she's getting support, encouragement and a sense of community.  She's able to see that there's a whole world of people out there living well with the wins and losses, laughter and tears, and the endless daily grind of diabetes. 

Being able to text me questions allows for better blood sugar control even with increased independence. Being able to visualize blood sugar trends allows us to work together to attempt to improve them.  But knowing that there are all those people out there who have so many of the same diabetes-related experiences she does?  That might be the most important boost to self-management: a healthy perspective on the whole mess.

Support

I'm going to take a little liberty along the time-space continuum and continue Thanksgiving weekend one more day. While we traveled this weekend, I was reminded how thankful I am for support along our diabetes journey from our family and friends. We were very fortunate to spend the weekend with people who are concerned and interested in a helpful way when it comes to my daughter's diabetes. I'd like to share one example of the kind of friendship I feel very blessed to have enjoyed.

We visited a couple this weekend with whom we've been friends since long before we had children. They and their 2 kids are great people and there are many reasons we enjoy their company and friendship.  As I think of so many people with diabetes who spent this past weekend surrounded by family and friends who simply don't get the whole diabetes thing, I'm ever more thankful to have these and other people in our lives who do.

These friends were at our hospital bedside after diagnosis, with funny gifts for my tiny daughter and treats and hugs for us.  They were kind enough to feed and shelter my husband for a night during our hospital stay since we'd been helicoptered to a city over an hour from home.  This hospitality allowed him to get some rest, to have a civilized shower and to bring some calm and perspective back to a challenging situation.

When we returned for appointments at the diabetes center where my daughter was diagnosed, we were invariably invited to this home afterwards.  I'd arrive at 4 or so, exhausted from the appointment's conversations and from the travel. I'd have an over-done toddler in my arms who'd just screamed through a blood draw.  We'd be escorted to their great playroom and I'd be handed a glass of wine and asked how things went this time while my daughter was handed an amazingly distracting toy or craft.  My friend would work with me ahead of time to plan a dinner my daughter could enjoy despite the NPH and humalog shots of that era and their related dietary limitations. There were always string beans, my daughter's favorite vegetable- at least when cooked al-dente the way our friend always makes them. Husbands would arrive from work in time for dinner and I'd leave the house relaxed as my daughter dozed on the drive home.

Several years ago, we moved a few hours away and don't see these friends as often.  Yet when we do, they remain concerned and interested in all things diabetes.  They still go out of their way to make their home and meals hospitable to my daughter when we arrive, saving carb counts, stocking seltzer, and asking questions.  We spent a great evening with them last Friday, catching up on all sorts of things.

And, of course, enjoying the string beans.

The Benefits of Becoming Visible

This year's JDRF walk had what we thought was a particularly cool new twist.  The walkers with diabetes were given the special blue shirts pictured below:

 

 

 

Suddenly we were aware (there's that big November word again!) of all of the people around us who had diabetes.  People of all ages and from all walks of life were walking around in these blue t-shirts, instantly identifiable as PWDs (people with diabetes) to the world around them.  People in blue shirts were nodding and smiling at each other.  Parents pushing a stroller containing a toddler in a blue shirt had other parents of blue-shirted people coming up to them and offering support.  A blue shirt made the wearer the star of the show, if only for a couple of hours.

 

There are some plusses to having an invisible illness- I've covered them here before.  But along the lines of these shirts and of JDRF's T1D looks like me campaign this November, there are some plusses to being visible once in a while too.  A big one is PWD's and those who love them finding each other for support. 

 

Are there ways, even without the blue shirts, we can be more aware of and supportive of the people we know who are on this diabetes path with us?  Can we be more attuned to picking strangers with diabetes out of the crowd?  Even a smile and a nod go a long way towards not feeling alone.

 

 

The People In The Orange Hats

We raised about $6000 for JDRF this month.  We had many donors, and their concern for my daughter and for everyone else who lives with diabetes does my heart good. I'm optimistic about where those funds are going.  Great advances in diabetes treatment are coming down the line in the near future, and my daughter's life is going to get easier. 

But - and please don't tell the fundraising people at JDRF this- I'd be almost as happy about our walk if we'd raised only $600, or even $60. 

What particularly sticks with me this year is the feeling of support.  We had more walkers for our team than we've had for several years.  As is our tradition, each of our walkers wore an orange hat (my daughter's favorite color) with our team name on it.   At any given point, each of us could look forward or behind us, and most importantly next to us, and see orange hats worn by people who care about us. 

They were my daughter's friends who walk her to the nurse's office when she's low.  They were her friends' parents, who keep an extra eye out for my daughter when she's in their homes and who we're happy to count as our own friends too.  Family and great family friends rounded out the contingent of people who surrounded us for the morning.

There will be days in the coming year when diabetes throws us for a loop.  On those difficult days, it will do our hearts good to look back and remember Saturday's walk. Our friends and family won't be right next to us for the three juice box night, or the long endocrinologist appointment, or the stomach bug that turns into a diabetes nightmare, or the days we simply feel like we can't do one more site change or math out one more dinner plate.  But when I've reached the end of my diabetes rope, I intend to look back to our walk and to remember the people in the orange hats.