Why Cindy Lou Who Needs Her Whoville

Jim Carrey's Grinch

Sometimes I call type 1 diabetes a monster.  I reserve the term for those particularly bad days.  You know the kind.  We have all had them.  But I guess you could even call type 1 diabetes a Grinch.  That would suit it just as easily.

Now to be clear, this isn't a holiday story or even one about a very popular movie.  It is more of an insight that our family had about needing to be with people that understand. 

Really and truly understand. 

It is about making connections.

At the walk, I met a little boy who hadn't been around any people living with type 1 diabetes on a regular basis. 

He had been diagnosed for around a year and he was quite possibly, the sweetest kid that I have ever spoken with.  He was articulate, attentive, thoughtful and very happy to be in attendance during the walk. 

The boy even wore pink.  Yes, a boy in pink.  Willingly. 

Nothing could describe his coolness better than that.

While he was at the walk, he breathed in all of the surroundings and took notice of the hundreds of people gathered, especially the kids living with type 1 diabetes.

His smile was huge. 

This event was clearly full of his kind of peeps (and mine too). 

We talked for a few moments about what kinds of things we liked best.  His favorite was the petting farm, complete with a tiny, adorable hedgehog.  Mine was the clown's expression after making three million complicated balloon sculptures.  (Nothing is funnier than seeing the clown simply blow up a balloon and call it a worm!) 

After the walk, we invited the boy and his family back for a thank you lunch.  While at our house, our youngest daughter spoke up and said, "I need to test because I think I am really low."  Seconds later, the blood sugar meter beeped it's warning and a 52 appeared.

The boy watched us hustle to get some glucose tabs and a little bottle of juice.  The scenario prompted him to suddenly announce, "I better get tested too." 

Again, the beep of a meter and a second reading of 62 popped up, along with a huge grin.  

He giggled and said, "I am low too!  Ha! Ha!"

More laughter ensued and our oldest daughter joined in with a third blood sugar test.  Complete disappointment rained over her face when the meter gave out a cheery 144. 

Despite the two low blood sugars and a perfect in-range number, the three kids laughed some more and told old war stories of type 1 diabetes lows and highs.  Theirs was a kinship unparalleled with none.  It was pure magic upon first meter beep.

And believe me, as a parent, nothing sounds better than laughter over what could be a very stressful situation.

I know that we are doing something right.  Our kids feel reassured too.  They do not feel worried or insecure or even isolated through having type 1 diabetes.

Instead, they realize that they have each other (and many, many, many other children and adults too). 

This is exactly the reason of why we walk (or attend conferences, diabetes camp, support groups, etc.).

Because even Cindy Lou Who needs her Whoville to defeat the Grinch.

Dr. Suess's Whoville

And at that moment three super amazing kids, kicked that diabetes monster (or Grinch) all the way back to the top of the mountain.

What We Teach (or What We Have to Learn)

I sent my oldest off to school today.  Nothing different from most weekdays.  She showered, dressed and ate breakfast quietly.  It was early and she is more of late riser, so our conversation tends to be nothing more than the facts.

"Did you remember to pack your lunch?" 

"Mmmhmmm.."

"Clean gym clothes?"

"Yes."

"Oh.  Bolus?"

"Yep."

Just a slight grimace on her face when I asked the last question... I know better than to bring it up, but sending her off to school is daunting without that final answer.  That was about it.  Then, the door of our car swung closed and she was off to start another day of middle school.

Here is where it is different:  Today, my daughter volunteered to open up and share a little insight of what it is like to live with Type 1 Diabetes.  She was going to broadcast the information on her school inner-television station and address all of her teachers as well as the listening audience - which is comprised of about 700+ students.

I wasn't going to be there.  Not to help her or guide her or even encourage her. 

I also didn't ask her to do this.  This is her own willingness to share her personal story.

Why on earth would any kid at this age open themselves up to be a potential target of teasing or bullying or just being perceived as being different?

My daughter is hopeful (and yes, young, innocent and brave too), so middle school doesn't seem like the tortured place that many of us remember.  Instead, she believes it to be a world unto it's own where kids are actually full of the possibility and hope of being able to make a difference.  Kids can nurture ideas, grow them into reality and make change. 

Kids are amazing.

At least that is what my daughter feels. 

When I think about the unfairness (and I don't use that term lightly) of all that she has gone through after being diagnosed with type 1 diabetes, this is the part of her that inspires me most; her ability to persevere through the struggles and to be able to find the hope - regardless of what she is doing or even whom she is with.

Even with a bunch of middle school kids that probably can not spell DIABETES but most likely, do not even care enough to listen or learn about what she is trying to tell them.

None of that matters to her.  All she sees is the hope that maybe one kid (or teacher) will listen, learn and maybe even donate to help us get closer to that cure. 

I feel like I have so much to learn.

Rock Star Status For A Day (or Then What?)

Now that the t.v. cameras have come and gone and our friends and family are slowly quieting down on the initial excitement of seeing someone they know on television;

We are still here...

Two sisters living with type 1 diabetes.

I don't remark on this for pity because pretty much, anyone reading our blog will have some affiliation with type 1 diabetes.

You guys already get it.

You understand the desperate need to find a cure.

I say this because advocating for change is not just one single moment on television.  It is the ability to persevere and continue on that mission for as long as it takes -  even after the t.v. spot aired, the walks have happened and our children are safely settled into school.

There are so many positive things to continue to do to raise awareness and some take little to almost zero effort...

If you haven't already done so, think about adding one of these six fun things into your list of helping bring awareness to type 1 diabetes

1.)  Apply to the 2013 JDRF Children's Congress or write a letter to your own congressional leader to let them know of the impact that type 1 diabetes has on your life and how you would love to see funding for research and ultimately, a cure!

2.)  Become a new family JDRF Mentor.

3.)  Sign up to help with the 2013 JDRF walk to cure type 1 diabetes.

4.)  Join a JDRF Coffee Group or start one in your area.

5.)  Start planning on sending your child to ADA or Lions or any other local diabetes camp in your area.  Believe it or not, early registration happens soon.  Our town starts accepting applications in December.

6.)  If you see a child or an adult living with type 1 diabetes, give them a hug and remind them that they are brave, beautiful and amazing!

WDIV, JDRF and NSS (Or Wow! We Abbreviate A Lot!)

After having the last few stressed- filled weeks, I was happily surprised by a phone call from a local public relations firm that works with JDRF. 

 

The day that phone call came in, was so harried as it happened directly in the middle of infusion set change for youngest daughter.  You know how that moment goes... do you stop in the middle of setting up an injection, risk an issue with sterilization or worse, the child you are about to poke sneaks off to an unknown location in the house?

 

Boy, am I glad that I took a moment to answer that call. 

 

That moment led us to another moment on the set of our local news media, WDIV - Click on Detroit being interviewed by Brandon Roux, fellow type 1 diabetic. 

 

 

Girls patiently awaiting their turn while sitting in the celebrity green room

 

Our local JDRF office had been provided with an opportunity from Brandon to showcase a family living with type 1 diabetes for the upcoming JDRF Walk to Cure T1D. 

Out of all of the beautiful, courageous families that I personally know (and many that I would love to meet!), somehow, we were picked to tell our own personal story of becoming the Naturally Sweet Sisters.



The Founders of the Naturally Sweet Sisters



In the beginning, I was little apprehensive.  After all, with so many bits of misinformation out there guiding the public along about childhood obesity and eating too much of this or not enough of that (ie., being blamed for this autoimmune disease) was worrying me.  In the spirit of advocating for a cure, it is also at times a little tricky because I am guiding two very bright little girls through this maze.  I just didn't want negativity to come from our appearance.

We discussed this aspect openly and agreed that the good far outweighed the bad.  My oldest daughter said that she hoped seeing our family talking about type 1 diabetes would give other kids hope.  My youngest daughter who seems like she is made for the stage, talked about the fun that it would be just to be on television.  Ironically, she was the quietest that she has ever been once we did start talking!

Once we arrived and escorted to the fabled green room, we introduced to two very special people; Kate and Gary Durak.  Kate is the Executive Director of our local Southeastern Michigan JDRF chapter.  She was wonderfully warm and understanding - thanking us over and over for making the early morning drive to the studio.  Which is a little funny because all I wanted to do was to thank HER for allowing us to be part of this special event. 

Shortly after, our WDIV interviewer, Brandon Roux stopped by the green room to welcome all of us and to spend a few moments getting to know our daughters and helping us to ease any nervousness.  His words of introduction to our daughters were, "Welcome to the club" and he immediately reached under his suit jacket to reveal a Medtronic insulin pump. 

(insert instant kinship)

It is moments like that were you do instantly feel like you are part of a club and any residual worry or nerves, seemingly fades away.  I knew that Brandon understood our desire to advocate without being perceived as victims. 



The interview went off without a hitch.  In talking about something that you are passionate about (finding a cure), conversation flows easily.  My two little (and seemingly so grown-up during the interview) girls astounded me with their clarity of responses.  Our oldest daughter talked about other children's perceptions of type 1 diabetes and our youngest spoke up to clarify that she can eat anything as long as she tests her blood sugar and doses insulin. 



After our news segment, the girls were given the royal back stage treatment.  Brandon didn't just shoo the girls away, but instead, invited them into his world of anchoring and made sure that they were familiar with everything on set.  He handed them a remote, helped teach positioning, camera direction and even a little programming magic.  Maybe it was part of that special club connection, but I have a feeling that he is just a really nice guy.



By the end of the morning, we declared it to be just the magic that we needed to completely let go of a very long two weeks of back to school training, 504 planning, more training and well, quite honestly, a bit more of that training.

Stepping out of comfort zones to advocate on a higher level for something that we are so passionate about was the best gift we could have been given.   I sure am proud of our Naturally Sweet Sisters and I hope that we have inspired many people to donate to our goal of a cure for Type 1 Diabetes.

To donate for a cure, please visit here.

Many special thanks to JDRF, Kate and Gary Durak, TannerFriedman PR, WDIV Television, Brandon Roux and Lauren Sanders plus all of the other wonderful people that helped our Naturally Sweet Sisters feel like rock stars for the day.  Our family truly appreciates your support in the fight to find a cure for Type 1 Diabetes!


School (or Making It Look Easy)

The first two weeks of school were stressful.  Not just on me, but on my children, their teachers and administrators.

After signing off on our 504s, drinking that much needed second cup of coffee and reflecting on our journey, I consider us lucky.

Yes, lucky.  Lucky indeed.

Why?  Because everyone on that list cares about doing the right thing and managing type 1 diabetes to the best of their ability so that my kids can achieve their best within their academic career.

A little bit of stress (well, a lot at times) seems like a small price to pay for an entire year of safety and success.

Today, when I dropped my girls off at their respective schools, I felt a bit of peace in knowing that we had once again established a team of caregivers.   People who would look out for my daughters and even my daughters themselves, who at this tender age also had a role to play of speaking up and taking ownership in parts of their care. 

Luck isn't just about something falling into your lap.  It is also about the result of an effort. 

If we hadn't put forth that effort to rally our team, hold the meetings, listen patiently and work together, we would have been in a much more unfortunate (the antonym of lucky) situation.

Yes, I am considering us pretty darn lucky indeed.

Favorite Things: What NOT to Say to a Parent of a Type 1 Diabetic

Since starting school a few weeks ago, I have been asked by school administrators, teachers and parents what my children can and can not eat. 

This quote has made me laugh all week long!  Hope you enjoy!

"There is only two things that my child can not eat.... poison and cookies.... made with poison!"

The T-Slim (Or Slim Shady is Cool Again!)

Last week, I had the opportunity to touch and feel one of the newest insulin pumps on the market.

The very sleek and cool T-Slim by Tandem.

In an instant, I was in love and promptly renamed T:Slim to Herbert.  (Side note:  Only the coolest gadgets like Pumpy and Pumpster get names.  Oh and my car, Miss Cherry.  And our dishwasher named Zippy.  Hmm, we seem to personalize quite a bit of our machinery.  If robots ever take over the world, we are going to be in! )

Yes, he is that cool.  The kind of cool that I could also envision oldest daughter falling in love with and wanting in our family of life-saving technology. 

Besides being adorably tiny (the smallest pump currently on the market), T:Slim also boasts a full color touch screen. 

If you love tech gadgets like the IPod, than this is for you.  In a second, I was able to fly through the screens to demo a cartridge change - simply by touching screens, not having to wait an extra second for up and down arrows.  Instead of hitting (and miserably missing) my inputs for blood glucose and insulin, I simply tapped on a keypad, entering my exact amounts.  Yes, I probably only saved a few seconds in the process, but to a busy, impatient teenager, this might mean the difference between actually entering that number or not at all.

My experience with the Animas Ping has always been great, but now that my oldest daughter is rapidly draining her 200 unit insulin cartridge, I was pleasantly surprised to see that the new T-Slim offers a full 300 unit insulin cartridge.  Not only that, but the prime feature is managed in a way similar to the Omni Pod.  With one finger tap, it loaded, removed air bubbles and primed for attachment to the tubing.

Tubing.  Yes, there is still tubing to contend with but the same detach mechanism (as on the Animas Ping) is available.  This might be a deal breaker for those that love the freedom of no tubing but for us, it isn't a big issue at this point.

Finally, the other most exciting feature is that the T-Slim offers a USB connector for downloading numbers online.  The "dongle" download is insane.  Trying to keep the pump steady for an infrared reader is excruciating.  In fact, because it makes me so crazy, I have now relegated that job to my husband.  Thinking about how easy a USB connector would be is exciting.  Finally technology for the 21st century!

All in all, the T-Slim is worth a second look and quite possibly, an upgrade, especially for older kids and adults.

If you do or are planning on this, post a review of your thoughts on this page.  We would love to hear some real life feedback. 

Footnote:  No one from Tandem or Animas asked me to say any of these things.  Just my own oberservations.

First Week of School (Not Your Pencils, Teachers or Books)

It is Friday night and one heck of a long, hard week is officially behind us. 

I can even brag that we passed our ABC's. 

Yay!   I am such a proud mama!!!

Insert eye roll.

Well yes, my girls are in 4th and 6th grade and should (and quite obviously do!) know this material.   The ABC's that I am referring to are slightly different.

Adjusted:  Two girls are happily adjusted in their new grades at their schools.

Briefings:  There is no adult crossing their paths that hasn't been briefed on the business of diabetes.

Crazy:  I am slightly more stained, stressed and undoubtedly older than I was before this week began.  Crazy might be the best overall mental adjective one could give me at this point.

And because I am exhausted, my excuse anyway, I instantly rearranged those ABC's to this:

Crazy Adjusted Briefings.

Which makes me laugh because after suffering, I mean sitting, in two long 504 meetings, that is exactly how I feel!

Those 504 plan meetings, aka Crazy Adjusted Briefings, are torture.  Even though we have been at this for a few years, I never tire of sharing information designed to keep my children safe.  What I do tire of is having to defend that information.

One administrator comment, "You want a teacher to remind a child to test while on a field trip?  That sounds like it is going to be hard to do.  After all, we have teachers who are busy and might forget.  I don't think we should rely on that.  Can't the child just remember?"

Crazy adjusted briefings indeed.

What is most challenging is keeping a level head and not immediately reacting to the comment.  Instead, while all I want to do is poke them in between their eyes, I have to build a team environment and open the conversation to adjusting my request with the school's concerns.

In the end, we determined that we could set a cell phone reminder to help both our child and the teacher remember to test blood sugar at appropriate times during the field trip.  In fact, even though that wasn't part of my original request, I did feel better knowing that we had an extra step in place should a busy teacher forget.

All of that negotiating, discussion and repressed emotion is draining.  While I await for the final draft of our 504 plan(s), I am taking it easy this weekend, enjoying the start of autumn and spending a little quality time with our family.

And maybe cheering myself up with this happy thought... there are only 175 more days of school.