Monday, June 30, 2014

Fundraising For JDRF

Our youngest, diagnosed just days after turning 3-years old.


Did you know that over seven years ago, Naturally Sweet Sisters was originally founded as a support mechanism for our JDRF walk team?

Our oldest, right around the same time that we started monitoring blood sugars at age 9.


Over time and as our girls grew, the site branched into more of a community support blog but still, with an emphasis on fundraising.  We fundraise because it will bring about change.  And one day, that change will include a cure.  Wouldn't you like to be a part of it too?


 

In honor of our final 30 days until our walk at Michigan State University, we ask if you help us continue to make a difference in the world of t1d by offering a small donation via a secure link directly to JDRF.  Your donation is tax-deductible and I can share that over 80% of the monies raised will go straight to research - guaranteed.

As one family, our efforts are small, but as many, we are making a difference.

We have hope.

#curet1d






To donate, please click HERE.   

Or copy/paste this address into your browser  http://www2.jdrf.org/site/TR/Walk/Chapter-MichiganNWOhioWalks4517?team_id=151687&pg=team&fr_id=3963

The Odds of Three Pumpers and A Pal

At a recent party, a group of girls were gathered together in a pack formation.  Chattering and smiling with arms entwined, they clearly looked as happy as could be.

As I watched, two of the girls peered back over in my direction with big smiles.  I realized with instant recognition that those were "my girls".  After catching my eye, they continued back into the folds of the group and the chatter volume increased a bit more.

Even though I felt a bit like a spy, I couldn't help but to continue to look over with a big smile.  Taking this exact setting, I could almost remember exactly how it felt to be the same age and to be surrounded by my best girlfriends.  It is a wonderful feeling.  Thankfully, for a few moments neither one of my girls cared about my intrusive mom-ways.  I stayed quiet, so I am sure that helped!

In the way that math always appears in the world of t1d, as I watched them with a big smile, I was struck by the calculation that three of the girls were proudly wearing insulin pumps clipped to their waistbands.  Even though two of them were mine, as a whole, the group merged into a gaggle of teens without individual identity.  That moment of recognition was lost as I contemplated the odds of having three with t1d at the same party.  This wasn't diabetes camp or any kind of diabetes function.  It was just a group of kids and parents hanging out.

Those odds, I realized, are the true representation of what is slowly unfolding.  While we were once the only family in our area, we are now one of many families.  Those odds, are not one I like either.

And it wasn't just me that noticed.  The one friend without a pump noticed too.  She was staring and watching the other three.

I held my breath for a split second, wondering what was about to unfold.

She stepped forward to reach out and gently touch one of the pumps.  "I need one of those", she said wistfully while staring at the girls' waistbands.  "Can't one of you make me one?"  Half-joking and yet, half-seriously, she looked a bit more.  "That is just so cool."  She marveled in an innocent and endearing way that only a sweet kid would say.

Instead of denying the existence of their insulin pumps, the other girls grabbed her hand and said that they welcomed her into the pump club as she was a honarary member.  The friend had been recruited through out the year to be a part of various activities and didn't mind waiting for a low to catch up or a break to check bg.  She simply was the kind of kid that just went with the flow and that meant that whatever or whenever t1d needed to be taken care of, she was a willing companion.

I overheard one of the girls say, "Of course you are one of us and no pump was required, but if you like, I can give you mine for the day!"  Laughter erupted from the group with each of the girls volunteering to spare a pump.

So in the way that sometimes happens in a world like ours, suddenly the coolest thing was to part of a group that entertwined with t1d.

With a bit more pride and a little more understanding, the gaggle of girls pumping and not, continued back into their circle of giggles and laughter.

The odds of my girls having great friends for life appear to be in their favor.


Saturday, June 28, 2014

Medtronic 530G: Tell Me What You Know

The time is here.

Oldest daughter is ready for pump #2.

After much debate, she has requested information on learning more about the Medtronic 530G.

She spent time at camp with a few other teens that were using it and walked away with a bit of interest in the automatic pump suspension for lows.  She also liked the idea of being able to load 300 units into her pump catridge and not fear running out of insulin.  Crazy, isn't it?  But that is what puberty does.

On her behalf, I offered to ask our Naturally Sweet Sister friends and find out what your thoughts were, especially as it pertains to a 13-year old.

So ideas, thoughts, concerns, whatever you know, please leave a message and tell us.  Like the best of all quizzes, there is no wrong answer.

And many thanks from us!!!

Friday, June 27, 2014

Summer Vacation Includes An Endo Appointment

We just rolled back in from our quarterly endocrinologist appointment.

Most of the time, I don't bother sharing with the non-t1d part of my world if or when we are going.  It often causes confusion or sometimes, concern, over a day in the doctor's office.  "Eek!  Who is sick?"  This time though, as we were stuck waiting in the tiny cubicle sized room, I decided to post on Facebook, a random moment from our long wait, in the form of a video with the girls goofing off.

video

In a way that surprises me (and I am not sure why that is), both t1d and non-t1d families and friends related to the video that we made.  Something about the long wait time appealed to everyone regardless of t1d.

It appears that we all are stuck in waiting rooms with kids from time to time.

And apparently, all of our kids find ways to entertain themselves while they wait.

And most importantly, we all tend to try to hide our silliness from the doctor.

LIKE THEY DON'T KNOW!!!!!

After the fooling around business, our endocrinologist came in and announced our A1c numbers.  If you remember right, the past two visits were tough on our oldest daughter as she is much more aware of 'good' and 'can-do-better' numbers.  For two consecutive visits, she was at 8.2.  This not only made her cry, but after some hugging and consoling, motivated her to become more thoughtful in her approach with managing her care.  While I have mixed feelings about the responsibility requirement that t1d demands, I also have a lot of pride in the way she handled herself.  Several times, she would check her blood glucose and determine it too high for eating, correct and wait.

Let me emphasize that.  She waited.  The same kid that fooled around in the office, also had the maturity to know that she needed to wait.

And it paid off.  Not just from the waiting but other careful decisions like making pre-bolusing a habit and changing sites on day 2.5.  All of that good work led to a beautiful 7.8 A1c today.  She was thrilled!

Little sister did great too.  Her A1c last visit was 7.5 and on this visit, it dropped slightly to 7.4.  She waited to celebrate until she heard her sister's number and then jumped up and gave her a high five.  I think she was more excited to see her sister happy, than to really celebrate her own number.

For me, it is what it is.  Basically, a number.  It isn't going to be the best number that the kids see nor is it going to be the worst.  I am still reflecting on how to handle it going forward.  I want (as I always want) the kids to see value in how hard they work, the good effort that they put forward and to know that at as long as they do their best, that is all that matters.

Maybe that is much like the rest of the parents feel about life in general.

We can all relate.





Thursday, June 19, 2014

Sweet 16: A Mom's Review

Sweet 16 documentary



A few weeks ago, I ordered my own copy of the documentary titled  Sweet 16; A Journey Into Teen Diabetes.  The documentary is about a young girl whom at age 16,  is grappling with a new type 1 diabetes diagnosis.  The film is shot in Montreal, CA, with scenes taken during the young girl's trips to various foreign countries in her quest to further understand her dual role in life as both a typical teenager and a person living with type 1 diabetes.

I have to admit that I was filled with a hefty amount of dread at seeing the documentary when it first came out.  Two of our local JDRF coffee groups got together to preview the film as a way to open discussions of teens and t1d.  From that viewing, a couple of parents mentioned a scene where the young girl experiences a hyperglycemic moment, cresting upwards of 25 mmol/L (translates to 450 mg/dl), ultimately causing a concerned call to the endocrinologist and a bathroom scene where vomiting is mentioned.

Here is the thing:  I know that kids get ketones.  My kids do just like many others out there.  However, seeing it and not fully understanding how that was portrayed in the movie was unsettling.  There are a couple of scenes that stick in my mind from Steel Magnolias and a Jodie Foster film that I can't recall the title of.  In both, bad things happened to good kids with type 1 diabetes.  Seeing another film, especially a documentary, where bad things happened, just did not seem like a great way to spend an evening.

And the real, real, real truth of the matter is that sometimes, I don't want to even watch anything that has to do with type 1 diabetes.  Afterall, we live the real deal every.single.day.

So I did what any nutty parent should do and I bought the movie.  Then, I waited for the perfect time when both girls were gone, so I could preview it in the confines of my own home with the Naturally Sweet Dad.

And I am so glad that I did.

The movie was nothing like I had imagined.  The young girl, Katia, and she is so young too - I think the dimples did me in!, freely talks to the camera about her hopes, dreams and worries.  As her story evolves, the dad introduces her to the subculture of type 1 diabetes (we all love this!) and brings her to NYC to be a part of World Diabetes Day.  From there, her journey takes her along a path of meeting inspirational athletes, doctors and researchers that are actively trying to find a cure for T1d.  She also meets leaders of Insulin for Life, a not-for-profit that provides insulin to underprivileged nations and finds her footing as a mentor herself.

Sweet 16 is heartwarming, inspirational and speaks directly to young people with the idea that anything is possible, with type 1 diabetes.

About that scene that I mentioned above...yes, it is in the film.  However, it is done in a way that is true to spirit of most adolescent children.  The young girl eats a big cookie and miscalculates the carbs before going to bed.  It happens, even to the most well-seasoned of people living with type 1 diabetes.  If anything, that scene and another one where the young girl has a hypoglycemic story, are the reality of what we face every single day.

Young children wouldn't get much out of the film, but the 13 -year old and up crowd would enjoy seeing this, as would parents and even schools/youth groups.

I linked the web page to the title of the movie (above).  I am not part of the movie and I purchased my own copy just like everyone else.  This review is just how I felt as a parent and the kind of information that I was hoping to find before I watched it.




Wednesday, June 18, 2014

School End

School wrapped up at the beginning of June for our family.

It was a long, intense year full of studying, quizzes, AR books and exams.  In fact, for the last two weeks of the year, I had to give up blogging to become a full-time study partner.

I haven't spent a lot of time talking about this, but part of what makes it tough for the school year is the amount of time that both of our daughters study.  I blame a lot of this on Common Core and the scramble of teachers trying to reach 'goals'.  The teachers are so busy being assessed on teaching and keeping the very full class moving, that most every day, 2 hours of homework comes home.  On a typical day, both girls will come home from school, eat a snack (or five!) and hit the books.  During this past year, we had a 5th and a 7th grader.  Imagining the amount of time that they had to study, how young they both still are, and you can imagine the amount of time that was full of stress in our home.  I fear for the upcoming year because I remember the difficulty of 6th grade and who knows what 8th grade will bring us.

Now, counter the above with nights filled with blood sugar checks, days of CGM alarms, kids trying to balance school life while taking care of their type 1 diabetes - all by themselves, blood sugars from 39 to 459  mg/dl during the year, and the rest of the myriad of things that happen while living with chronic illness and you will know why I am so proud...

Both of my girls rounded out their year with the highest of academic honors.  My oldest received straight A's in all of her classes and was given academic scholarship awards as well as honor roll awards.  My youngest received straight A's and one B+, plus 4's (exceeds grade level) in her non-core classes.  Beyond that, they both had teachers send home comments about outstanding work and consistent hard worker.  Citizenship was also commended through their support of helping classmates.

All of this left them with the identity of being a 'smart kid'.  Who knows how this will play out in the future but I like that they have pride in their achievements and in themselves.

I also love this; when their dad asked them how they fit in at school (semi-serious talk about cliques and growing pains), both girls said that they saw themselves as leaders.

Their defining moment was not t1d and had nothing to do with chronic illness but it had everything to do with their hard work.

I am still learning and certainly do not have the answers, but maybe this boost of self confidence at an age riddled with doubt, is why it is important to do well at school and to be validated for the effort.  Because in order to do well and receive that validation, t1d has to be taken care of first.

Maybe this is something to consider for all of us embarking onto young adult life.  I know there is no magic answer but I am optimistic that we continue to find ways that work to help the girls feel good about themselves and t1d.  I would love to be the one family that can say, "and we never went to back to the hospital after diagnosis. "

To be continued as we forge ahead through the rest of the teen years.....  but for now, time to have some summer fun!





Tuesday, June 17, 2014

Camp Week and Looking Back

Summer Camp


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 there 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, were in the best possible 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.