Monday, January 19, 2015

Ownership Isn't Always That Great

Oldest daughter has ownership of her T1D.  She has for a while.  Not surprising as she is the kid that works hard, puts in the effort and looks for positive results.  Her pride and joy is her ability to do well and with a great attitude.  I would love to say this is from me, but the truth is that she has always been this way.  Our running joke is that neither she nor her sister ever cried as babies.  They were just always full of sunshine and too busy enjoying the world, then to stop to have a cry.  For the most part, that really is true.  I am sure there were tears, but in my sweet mommy memory, I really can't think of any major moments.

Back to the weekend adventure... On Saturday, she headed off to a sleepover with her two best friends.  For the first time in a while, we slightly adapted our normal game plan of testing before falling asleep and having the hosting parent wake her at 6:00 a.m. for a re-test to testing before falling asleep and setting her own iPhone alarm to wake herself up for a re-test.   She also places her phone on LOUD, her CGM set to HIGH and a juice box along with her meter, next to her pillow for easy access.

As a side note, this is part of my teaching T1D strategy; to help her find solutions that she will one day be able to take with her, no matter where she goes.  

And it worked fabulously.  Oldest daughter sent me a text message at 2:00 a.m. with her bg of 168 mg/dl and again at 6:00 a.m. with another bg of 136 mg/dl.  Since she stayed up so late and wanted to keep sleeping until noon - because that is what teenagers do in the real world - I texted her back and had her take a few sips of the juice that she brought from home to make sure that her basal didn't tank from the unusually long late-morning sleep.   She went back to bed and I didn't hear from her until 11:30 a.m. when she texted me that she was 119 mg/dl, hungry and ready to eat pancakes.  Around 3:00 p.m., we picked her up to bring her home and while she was exhausted, she was also full of stories from their adventures which included a hefty amount of outdoor fun in the snow.  Blood sugar was still steady at 149 mg/dl and she was ready to shower, eat and head off to an early bedtime.  We high-fived at the success of the adventure and at our new tweaks in the T1D Sleepover Game Plan - in CAPS and BOLD, because that is a thing that I think we should all own!!!!

Then, around 10:30 last night, long after oldest daughter had gone to bed, she woke up feeling disoriented and extremely thirsty.  Walking downstairs in a fog, the Naturally Sweet dad asking her if she was alright, she started to cry and said she just felt thirsty.  He jumped to grab a meter and check her blood sugar.  453 mg/dl.  Exhausted already, she cried even harder, because in her mind, suddenly the hard work of maintaining blood sugar over the week was completely GONE.

Her words through tears were to the point that she knew we had an A1C appointment on Friday and she was devastated that the 453 mg/dl would be on her downloaded blood glucose numbers for the endocrinologist to see.  She had been hoping for that proverbially gold star in managing as well as she had.  Suddenly, in her high blood sugar induced mind, that was no longer.  Instead, she feared a reprimand.

I walked into the room just as the situation was unfolding.  Not entirely sure what to say to help, I just reached over and gave her a hug and told her not to worry that I was taking her T1D back.  It was now mine to deal with and not hers.  I whispered that this happened when I was home and all she was to do was to feel happy about her own self-care and not to worry one second about this one lousy moment.  I would handle any discussion with her team and she wasn't responsible.

Then, we took off her old infusion site and replaced it with a new one in a different area.  I gave her the rest of the correction insulin, tucked her into bed and murmured that I would make sure the numbers came down overnight.  She was so tired that her eyes were already closed but she seemed to relax even more as the weight of T1D care was lifted.

This morning, her numbers are back in range and she seemed rested and more like her sunshine self.  Me, on the other hand, still feel a little sad that I can't entirely remove the burden of self-care stress from her shoulders.  I wish I had more answers on how to show her that no matter what happens with T1D, sometimes the results are truly out of our control - AND that is alright.

If you have tips, please leave them on our Facebook page or here on the blog under comments.   Oldest daughter and I would love to read them.

Sunday, January 18, 2015

Connecting Through A Family Diabetes Retreat

January is on overload.

Kids are busy with the final practices leading up to their four-show theater production.  The semester is winding down with the final quizzes, assignments and exams.  The quarterly A1C appointment is nearing and a variety of other projects needing completion are looming in the not-so-distant future.

As always, when life is at it's busiest, the blog tends to slow to a crawl.

One fun, do-not-miss January event that I wanted to share was our attendance at the DYS Kalahari Family Retreat and Camp Reunion in Sandusky, Ohio.

Held annually, this neat opportunity is geared towards networking families living with T1D to other similar families, durable medical goods vendors and diabetes educators.  The location is phenomenal as it is held at the famed Kalahari Hotel and Water Park.  A great perk of having a weekend educational retreat at Kalahari is that it felt less like school and more like a camp experience.  Kids were able to move around and enjoy all things FUN while hanging with like-minded T1D peers.

The same went for the parents.  While it initially can be a bit intimidating to reach out to other parents, the relaxed atmosphere made it easy to strike up a conversation and enjoy small talk both about T1D and about life in general.  For us, this is one of the greatest blessings of T1D; having a broad circle of true friends.

As a mom, I also keenly observed my daughters in their new role of having lived with T1D for a long time.  Both girls were asked to initiate conversation with kids recently diagnosed as a way to help the newer generation living with T1D to feel more comfortable.  While the first evening 'Dance' event left us parents staring awkwardly at silent kids, each too shy to say much, the second day involved immediate togetherness as the girls, with their new friends, roamed the water park and waited in lines to take wildly exciting water slide rides.  Talking flowed more freely (and less-uncomfortably then with parents trying to coerce kids into talking! Sorry says this very excited mother!!!! ) and bonding happened much more naturally.  In fact, by the end of the retreat, phone numbers were exchanged and kids were texting with plans for meeting back up at later dates.  There was also a touch of romance but I have promised not to write about that!

I credit events like this for keeping our family on the path of acceptance of T1D.  Throughout the teen years, where everyone wants to fit in, a retreat allows the comfort of acceptance.  Visually, kids in bathing suits with pump infusion sites, CGMs or even testing blood sugar poolside, makes for a very normalized setting.  I noticed it but my kids felt it.  At one point, youngest daughter needed to stop to eat, not for a low blood sugar but because she was hungry.  Addressing the situation with her new friends, both immediately understood and no further questions were asked.  In a community like T1D, the compassion runs deep and kids intuitively know that meal times are a key to successful T1D management.  While a very real occurrence in the rest of our non-T1D circle is that meals are a "choice" and most kids do not want to stop having fun for any reason.  Clearly, even that paradigm shift can be hard on children living with T1D.   It's difficult to explain the 'whys' of T1D management even to adults, let alone kids.

For those reasons, I highly recommend seeking out an event through your own diabetes social group like DYS.  JDRF and ADA are also fabulous resources.  Even if there is no local group, contact your endocrinologist office to see if the hospital offers a teen/kid chronic illness support group.  It's worth the effort!

Friday, January 16, 2015

And Off She Went

With ever-present, ever-annoying alarm sounding at 5:30 a.m., against my usual desire to curl back up and hibernate for another hour (or three), I instantly woke up and hopped out of bed.

Our oldest daughter was heading off to a leadership camp.

While the distance of the camp wasn't overly far, just at a neighboring county school, it was still a journey.  Even more so, it was outside of our normal routine and as life has been for most of this year, our oldest daughter would be on her own for care throughout the day.  (For the record, this day will also include a breakfast of bagels and doughnuts, followed by a lunch of pizza!  Pre-planning is a key to her success and she has already decided to opt away from the carb-laden breakfast by bringing alternatives and eating a breakfast at home.)

As I moved around the kitchen, making sure that she was ready to go and juggling a hot mug of coffee for myself, I was reminded yet again, of how life is transitioning.

This isn't the first trip away from mom and dad, nor would it be the last.

Our oldest daughter is sprouting her wings of confidence and ready to fly through the world on our her own.  And while this journey was a short, one-day event, it still spoke volumes of where she was headed.  Her future is bright.  College WILL happen.  I see that now.

Finishing my coffee and saying good-bye with a reminder to, "Eat a snack and text me", I quietly kept one more thought to myself.

I wish I would have known someone else's 'Oldest Daughter' so that I would have understood early on that life will happen exactly as you believe it be possible.  

T1D is only as limiting as you allow.