Exactly Where She Should Be

It's been a few months since our oldest daughter tackled her latest position as part of the Mott Children's Hospital Teen Advisory Committee (TAC).

I wrote a bit about her initial process here.

From Naturallysweetsisters.com October, 2014 " For the first time, she will have an up-close view to how the world is full of many different levels of ability and that yes, while T1D does suck (her very eloquent description) - because it does (my description can be even worse at times) - the 'suck' could be very different in someone else's shoes.  That couldn't be more perfect for a Teen to realize."

Interestingly enough, what I predicted is exactly what has happened.  Through her participation, she has had exposure to much more than she could have ever imagined within the confines of T1d.  I think it is truly a gift.  But what is even better than me thinking that is watching her feel the same way.

As I drove her home from her meeting last night, she explained how being in the group was inspiring. She explained that when she realized that she was the youngest person in the room, suddenly, she understood that it was an opportunity.  "Mom", she said while conspiratorially lowering her voice, "I have a chance to soak up all of this knowledge.  It is like I am going to be in a mini-medical school!"
She then went on to share that she confirmed her decision to go on to medical school.

"I don't know what kind of doctor I want to be.  I just know that I want to help.  I want to be there for kids and I want to make a difference.  I might even be a psychologist.  I absolutely love my time with this group."

I listened to her talk about other highlights of the group interaction.  Oldest daughter had volunteered to bring in an ice-breaker and she chatted about how well it was received.

"We laughed, mom.  Some of the icebreaker questions were so funny and some answers were totally not what I was thinking.  I thought it was so cool to hear how different some of the ideas were.  Most of all, I was so happy that it got everyone to open up and share."

 We brainstormed some other ideas for future meetings and she also explained that she had been assigned research homework for an app that the group wanted to make.

Finally, as we pulled into our driveway, oldest daughter quietly said this:

"You know something?  This is the first time I have been somewhere and have felt instantly relaxed."
"Mom, they totally get me."

Thankfully it was dark, because her words lodged directly into my heart.  I get her.  I totally get her.  But as mom, well, it leaves me as mom.  She is savvy enough to think it is my job to agree.  So I parked, walked around the car and just gave her a big hug while saying I was so proud of her.

In a while, when the timing is right, I will explain the deeper thoughts that I have about growing up.  She is a teenager and so much of her world is consumed with cloning herself to match the others of hundreds of girls that blend together in the school hallways.  

What she hasn't learned is that in life, the most amazing people are the ones that didn't perfectly fit molds.  They are the dreamers, the designers, the doers, the risk-takers, the inventors and all of the creative and compassionate souls that dare to try.  Those are her people.  This is exactly where she should be.

TGIF

It's Friday.  Thankfully, the BG monster got my message.  

It Was Better Because It Came From Her Friend

For the approximately 589,000,000,000 time - and yes, we have been counting, the question was asked innocently enough to my oldest daughter.

Can you eat these?  Followed by a point at a platter of chocolate chip cookies.

Frustrated but remaining calm, she opened her mouth to respond but before she could say anything further...

Another voice next to her piped up and said, "The only two things that she CAN'T eat are poison and cookies with poison."

Yes, apparently her best friend has been counting that question too.   

No Matter the Highs or the Lows, the Show Must Go On.

Earlier this month, both of our daughters had multiple performances in their middle school play.  This was their second year on stage and mostly, I felt like we had a great handle on the required long hours of practice, performing and T1d navigation - because we had already been there, done that and it is always so much easier the second time!  The girls LOVED the play - a 50s style musical - and always came home with bubbly enthusiasm regarding the cast, costumes and sets.  If possible, it was even better than it had been the year before and that was a great year too.

One little side-story, my girls are usually very quiet and reserved in public.  This year, my oldest daughter decided to try out for a larger speaking role (usually given to the 7th and 8th grade students) to help her become more comfortable speaking to crowds.  Youngest daughter in 6th grade was cast along side all other 6th graders as part of the chorus.  As the weeks went on and oldest daughter grew more comfortable in her role, our youngest decided that she wanted a bigger part.  Unfortunately, there were no options at her grade level.  Making the most of her stage time, she started to improvise with fun gestures and silly dance moves. The stage manager fully approved and so a little ham was born!  

After four months of rehearsals, the big production weekend of shows finally arrived.  Performances were held nightly on Thursday, Friday and Saturday - with an additional matinee show on Saturday as well.  

On Thursday night, as my husband and I were watching the performance with giggles and delight for both of our daughters' performance, my cell phone silently alerted to a new message.  Trying to discreetly look down, I notice that it is from another mom, also in the audience, that is fully enjoying the performance, but most especially, youngest daughter.  

"She is cracking me up!  Salt, pepper and sugar in her Coke?  Taste.  Make a face and repeat.  Ha ha ha!"   

The Naturally Sweet Dad and I quietly laugh and agree that the antics of youngest daughter are beyond silly.  She was enjoying her time in the spotlight, even more than we could have possibly imagined.  

When the first performance ended, the cast met with the audience in the atrium as part of a 'meet and greet' while in costume.  The texting mom came up to youngest daughter and explained that she thought her performance was absolutely delightful and made the show extra fun to watch.  A couple of other parents approached youngest daughter and also offered the same sentiments.  As the evening ended, youngest daughter was skipping out of the theater and more than excited for the rest of the shows to come.  

Now during each practice and performance, the girls and I had arranged for a certain number of texts with blood sugar information.  Both girls were also wearing their CGMs, so it was easy to for each to keep track of what was happening in-between checks - as long as they looked at the sensors.  Oldest daughter was assigned the role of reminding the little sister and conversely, youngest daughter was tasked with checking up on her big sister.  Teamwork seems to help.  

The second show on Friday night was probably the hardest, especially on youngest daughter.  I wasn't fully aware of where her blood sugar was heading when that same mom texted me this during the first act. 

As we exchanged texts, the message started to resonate.  While I thought the mom was initially checking in to make sure our youngest daughter wasn't embarrassed, she was really pointing out something that alarmed me enough to question blood sugar.  

In between texting the mom, I shot off a quick test to oldest daughter who was back stage awaiting for her next scene.  

And then I endured the horrible thing that sometimes happens in our world.  I waited for a response. 

And waited. 

And waited.  

More texts from the mom came in, which caused that tingly sensation of bubbling panic... how many more minutes until the break?

Still no answer from oldest daughter.

When the picture arrived on my phone, my last bit of calm shot out the door.  I had been trying to play it cool and keep the conversation light so as not to panic the mom.  In not being able to actually see the part of the stage where our youngest was at, allowed me to keep things a bit lighter.  The picture though, spoke clearly of a low blood sugar.  

See that little red-skirted girl?  That is not the picture of a girl that loves to be on stage.  That is a little girl that is dropping.  

Seconds later and before the curtain was down, I was already racing out of the theater and around to the backstage to find our youngest.  She was just walking into her dressing room in search of a meter to check because she felt 'low'.  Beep.  Whirrrrrr.  Beep.  63mg/dl.  Retrieving her CGM, she points to an arrow pointing down.  

Oldest daughter walked into the dressing room shortly after we are already treating the low with an assortment of juice and candy.  She explained that she missed the text from me as she was watching the show from behind the stage.  The noise level is LOUD and frankly, T1d does NOT take center stage at times like these.  (Which also makes me kind of proud - my girls are enjoying life!).

However, because we had already had enough 'drama', I asked oldest daughter to check her own blood sugar while I watched.  Her number was perfectly in range and I was able to head back to the audience just like any other parent.  

Before I sat down, I walked over to the other parent and gave her a hug.  I explained how she probably didn't even know how great her timing was, but her observation skills really did save the day.  She was in awe and said she never once even gave thought to T1d (also another proud moment for not creating a persona that screams T1d family, but instead, a non-labeled family!). 

Then I sat back down, next to my husband and gave him a hug and squeeze as we both processed what just happened.  

After all, in T1d world, no matter the highs or the lows, the show must go on.

The Question That We All Should Be Asking

Diabetes.  Education.  Everyday. #C3N

This morning I was offered the delightful opportunity to share some valuable T1d parenting insight with our clinic shareholders.  This particular group was made up of pediatric endocrinology doctors, researchers, clinicians, CDEs, nurses and parents.  

I say it was delightful because without a doubt, part of what has made our lives better is the idea that WE - the patients and caregivers - now have an opportunity to be heard.  (insert pure adulation at seeing our people working on this important endeavor!)  Each time an opportunity like this presents itself, I am THERE, smiling, nodding, encouraging and also offering a view from the perspective of parent.

My take-a-way from this particular meeting was the complex way our various clinic shareholders view measurement of success for diabetes care management.  As ideas flowed, two specific examples emerged from the clinic side.

1.)  The number of blood glucose checks performed daily.

2.)  The A1c.

Now, before I go any further, I want you to ask this question to your child, spouse or loved one living type 1 diabetes:

What is YOUR measurement of success for Type 1 Diabetes care?

********   SPOILER ALERT!!! ************   

To keep this question from being swayed by the next few paragraphs, only after you have asked the question, continue on.  I would also love to hear your response, so please feel free to add into our comments or leave a message on the Naturally Sweet Sisters Facebook page.  

As the number of blood sugar checks and the A1c were discussed as measurements of successful T1d care, myself and the other parent in the group, immediately raised concerns.  

How many teenagers want to test the number of times recommended?  Will we be setting kids up for failure before they start?  What happens to the measure for the patient utilizing CGM?  In addition, focusing on the A1c is only part of the picture.  A huge part of my blog is the reassurance to parents that the A1c is simply one snapshot in time.  There is no association with the million things that a family dealt with over a three month period.  

The reality is that people are more than numbers.  

Later in the day and long after the clinic meeting was over, I cajoled both daughters into driving with me to the neighborhood grocery store.  As we pushed our shopping cart around while perusing veggies (second best place for open discussion, next to being held hostage in the family car!) , I casually asked the above question.  

"How do you measure if you are successful in your T1d management?"

Without hesitation, oldest daughter immediately said, "I know I am successful when I get to do anything that I want and there is no limit.  Like when I want to go to a friend's house and you tell me to go ahead.  All you say is to make sure that I text you and dose (bolus) for my snacks.  When I am 500 mg/dl, I CAN'T do that.  Not even just because you won't let me but because I feel like crap."

A moment later and youngest daughter said, "For me, I know it is good when you tell me that.  When we were at the doctor's office and you said, 'good job' and then, Dr. S. said, 'Way to go!', that's when I feel like I am doing a good job.  I really just need to hear it from you."

Interesting, isn't it?

Clearly this is a major paradigm shift for both the patient and the provider.  

However this is also an OPPORTUNITY to develop a better, more thoughtful, patient-centered clinic.  

It all starts with some dialogue.  Let's keep it going!  

Teen T1d - Thank You To Solara Medical Supplies

I spend a lot of time talking about our team.

For our family, team is a critical concept.  We find that we are most successful when we have people surrounding us that want the same core values for our daughters.  It used to be 'Kids First, Diabetes Second' and we stuck with that as our mantra throughout the toddler and young child years.

As we enter a new stage of life, we are evolving into fostering an environment that allows happiness, growth, independence and successful T1 diabetes management.  In a nutshell, we are preparing to transition our girls into a life that includes high school, college applications and one day, a dorm room.  Yes, that is right... we are basically leading our children into care that will one day allow them to have a sleep-overs every single night for four years!  We do need a team to help us through it or else I need to prepare to sleep on their doormat and I am way to old for that.

As we move forward, I am coining this time of life as 'Teen T1d'. I'm sure that it will be a big eye-roller in our house (because that is what teens do), but we need something new to remind us of what we are trying to accomplish.  


We couldn't do this alone either.

Enter Solara Medical Supplies and our friend, Jeff.  We met several years ago at a JDRF breakfast. The meeting was one of those HUGE epiphany moments for me as a parent of two newly diagnosed daughters.  After asking who our supplier was and trying to comprehend that we had approximately four suppliers with around eight monthly medical package deliveries/pick-ups (pump supplies, lancets, meters, strips, cgm supplies, plus insulin and thyroid medication) for two children, he quickly stepped in and suggested a better fix.

As someone who had adjusted her home life around waiting for the UPS driver and mailman, it was incredible!  I had no idea that life could be, ahem, simplified.  Not completely simple, because after all, we still had to manage T1d in two small children.

For our next delivery, our new streamlined process allowed us to receive one big box every three months with one smaller pick-up at our local pharmacy.  Best of all, I was free to go about my day.  On top of that, Jeff helped us set up a re-order phone call and later when that was cumbersome, an email reminder for supplies,

As the years have rolled on, Jeff has been at every local JDRF and ADA event, meeting and greeting parents, children and teens.  He made it summer tradition to volunteer, using personal time, at our local diabetes camp.  He also spent hours planning and coordinating special events for families.  All of this just to take the focus off the daily grind of injections, pokes and yes, even supplies.  A great story surfaced from his boss with the gist being that Jeff does what he does because he is not only fabulous at it but because he wants to make sure it is handled properly.  Trust me, there are very few people in the world that can claim this sort of skill and I am glad that Solara found it within Jeff.

Case in point, when I started mentioning ideas of needing a teen group for the Teen T1d, Jeff was the first one to jump into action with ideas, enthusiasm and much-needed charisma for kids that are often too shy or awkward to participate.  He explained that he had wanted to do something like this for five years.  He wanted to see teens (and really kids of all ages) excel in life and the best way was leading the charge on giving them a safe space to learn, grow and thrive.  After weeks of planning and one very successful event premiere, our committee of volunteers high-fived.  Next to us, Jeff just quietly cleaned up - reviewing the day's event and already planning the next teen event.  

With Solara, it isn't just Jeff either.  It is the entire company he represents.  From Alan to Kim and all in-between.  Each person, even if they are not touched personally by T1d, feels a deep kinship with the families that they service.

Before I wrote this piece, I asked Jeff if it would be OK.  Once again, he had formulated a plan on helping our family with managing T1d.  And once again, I was more than grateful to be able to rely on his expertise to help us get through a difficult situation.  I told him that I wanted to share to all of my readers of how instrumental Solara Medical Supplies has been throughout our journey as a way to thank him for his kindness and help.

Jeff graciously said thank you, but also said he would do what he does even without a spotlight.  He is just that kind of guy.

Thank you to Jeff and the entire Solara Medical Supply team.  The Naturally Sweet Sisters couldn't do it without you!

Disclaimer:  I was not solicited nor compensated to write this blog but truly wanted to share our experience as a family with a supplier that we know and trust so that it may help others. 

Throwback Thursday: A Look-Back at ADA Camp - Repost from June 17th, 2014

On February 1st, 2015,  ADA Camp Midicha opened for on-line summer camp registration.  

I can't say enough wonderful things about this little piece of a mid-Michigan happy place for kids that live with Type 1 Diabetes.  To us, camp is MAGIC.

In going through my old posts on the subject of camp, I thought I would re-post one of my more reflective pieces.  I also want to encourage each and every parent to think about signing up for camp.  I truly believe that the magic from camp is worth it.  


To find ADA camps in your area click HERE.

Happy Hunting!





June 17th, 2014 Repost


It is finally camp week.  The one week of the entire year, where I know with all of my heart, that my two daughters will be well taken care of.

I have rested. 

I have relaxed.

I have also started a kitchen rennovation project.

Because even though I am a mom of two girls living with t1d, I am also just a mom.  There is not a better time to do something, than when the girls are out of the house (and out of my hair!). 

This year, I was struck by two things during our camp drop-off process and I wanted to share them both with you.

The first observation that I had was the realization that our family is not considered 'new' in any way.  As long-standing camp veterans of both day and overnight camps, our two daughters checked in through the camp and med staff as old friends.  They know most of the adults; both volunteers and employees.  Friendly hugs and waved were exchanged from the moment we parked our car.  Our two daughters also had plenty of camper friends waiting for them.  From the squeals and giggles of groups of girls, you could tell that friendship connections had been made and well-cemented.  My favorite was watching past counselors spy the girls and eagerly ask about their school year, how summer was going and if they were ready for camp.

It was all smiles from mom and dad until the repeated question surfaced from all of their friends, adults and counselors of  "Were Oldest and Youngest Daughter ready for a week away from mom and dad?" 

Huh?  What?  Time away from me and the Naturally Sweet Dad?  Why would they desire that and why are you asking them that????  

Because they are kids and this is their moment.  Not to mention, from their viewpoint, they get to have me out of their hair for a week!

Yes, this is true.  Which brings about my second realization.  Camp is not just for moms and dads, but for the kids living with type 1 diabetes.  Not in the way that we tend to think about where all kids are the same and all kids have to take care of t1d too.  But in a different way.  A way that allows them the freedom and the release of structure, rules, table manners, heck, probably even hygiene.  Maybe not so far as a Lord of the Flies, but still, there is a satisfying sense of child in charge from the kids during their camp week.  The kids have a chance to develop more independence, more self-initiated peer/adult social skills while continuing to build their identity as little human beings.  At camp, anything goes.  Of course, in the most positive ways.

We left on Sunday, knowing that our only two daughters, both living with type 1 diabetes, will be in the best possible T1d care.

We also left on Sunday, knowing that our only two daughters are building positive lives full of adventure and independence.

Which is exactly the way it should be.

Quarterly A1c Appointment and a Visit Back to 1st Grade

Recently, the girls and I went to 'our' quarterly endocrinology appointment at the University of Michigan - outpatient clinic.  Between the beginning and the end of the day, there really wasn't much to tell.  All of the boring and tedious tasks were completed; weight and height measured, finger pokes for blood sugars and Hemoglobin A1cs taken, and the usual small talk about recent school activities and blood sugar management - all discussed and recorded into their electronic patient records.  

Not surprisingly, oldest daughter hadn't changed in growth over her last three month appointment. 

In relation to her lack of growth, she also had her best A1c since the first year she was diagnosed with T1D.   For those that want to know, the snapshot (because that is all that it is) was 7.0.  

We (the team of endocrinologist, CDE, oldest daughter and myself) discussed that meant that she was close to reaching her adult height; a fun-size height of around 5'1" or 5'2".  As a 5'3" or 5'2" snack-size, I can say that with a smile.  Petite is perfectly fine!

Then we also talked about the fact that, with little effort on oldest daughter's part, this lack of rampid growth hormone has also allowed her body to lower her A1c - with basically NO EFFORT. 

An immediate correlation came to mind.  There is a family story repeatedly retold from when oldest daughter was a first grader.  We retell it because as an all 'A' kid, it seems crazy that we ever had a situation where she wasn't eagerly racing to learn more.  

Years ago, I remember her teacher worrying about her reading skills about mid-way through the first grade year.  After a phone call and in-classroom parenting meeting, the teacher came up with a plan to allow our oldest daughter  to spend time with a 'Reading Specialist' with the hope that would help her catch up to where her teacher wanted her to be.  

As my first born, having a teacher tell me that she was concerned about our oldest daughter's word recognition and reading fluency scared and worried me.  Even though she was only 6 years old starting first grade, common sense failed me and I began to panic.  I had many sleepless nights and a few tears in thinking about the million ways that I had failed as a parent.  I LOVE to read and having a child that was behind in the first grade world of literature had to have meant that I wasn't doing something right.  After all, everyone else seemed to be learning how to read at lightening speed.  Or so I thought after reading parenting blogs and articles that told me that.

Fast-forward to the end of the school year.  Oldest daughter passed into second grade and her reading did pick up marginally.  While in second grade, she kept her scores up with the class average but still, wasn't exactly a lover of books.  Then, third grade came and a book series about mermaids.  Since we spent a lot of time at the lake, oldest daughter felt a deep kinship with mermaids and fell in love with the idea that there was actual stories about girls like her that could be mermaids.  From there, she devoured books.  Her reading scores shot up from average to grades beyond.  As an eighth grader, she scored at college level.  

What happened?  Well, I firmly believe that when her brain was ready, she was ready.  Pushing her did no good.  We just had to be patient for her mental growth.  

I wish I would have known that first time that learning happens for each child at their own pace. 

Much with an A1c, when hormones aren't as active, a lower blood sugar will be much easier to achieve.  

That doesn't mean that you should stop reading to your child and it certainly doesn't mean that you should let up on pre-bolusing or carb counting, but it does mean that it will get easier and things will 'click'.  

So on that note, pre-bolus and enjoy a snack while reading a good book.  And for me, well, I am going to be more relaxed for the next two years as her sister goes through her growth period.  

It is a Naturally Sweet Sisters doctor order!