Thursday, May 22, 2014

Tubing Mishap

On Sunday, just as we parked our car to go into a home improvement store to select the weekend's assortment of outdoor 'to-do' requirements, a little voice said,

"Well, that's never happened before."

This observation is followed by a giggle from youngest daughter and an outright GASP! from oldest daughter who happens to be co-captaining the back seat of the car.

"Is everything alright?", I ask uncertainly.  My view is obstructed with the flurry of passenger activity, scrambling to open doors to get out of our vehicle.

"Yes," says youngest daughter, with a giggle bubbling up in her voice.  "Be sure to have your camera ready.  You're not going to want to miss this."

Photo: Livy

So I did.

And this is what I saw:  Youngest daughter, with the biggest goofy grin, holding a fragment of her insulin pump tubing that somehow, had completely snapped off the insulin cartridge.

After further inspection, we can see that the insulin cartridge is still securely lodged inside of the pump. What is even more interesting, is that because the cartridge is in place, the insulin pump doesn't recognize a malfunction.  There are no alarms and the pump is happily dispersing insulin as though nothing is amiss.

Except, for however long our youngest daughter was disconnected, she was not receiving any insulin, which can be tricky as this was in the morning and she had just bolused herself for a hefty breakfast.

Yet, she was all smiles.

So this is what I did next:  joined in with a laugh with both girls because sometimes, when nothing is too terribly wrong, it is really ok to take in the moment and enjoy it.

Then, I thanked my lucky stars that our car console has an emergency supply kit with all of the pieces needed to do a parking lot infusion site change.

Which prompted the girls to call me a hero and tell me that I am awesome.  And yes, I accepted that title.  With the world of growing up, mom is LOTS of things lately.  Hero is actually one of the best! ;)

Sometimes, life is good.

Even with a weird tubing mishap!

Tuesday, May 20, 2014

Unintentially, Broadening Her World

Oldest Daughter asked for a book.

She is in seventh grade and while she is a great student, extracurricular reading is not always the first thing that she chooses in terms of hobbies as she would rather practice hair, do her nails or send friends Instagram messages.  So when she requested a new book, I did what any deliriously happy parent would do and RAN to Amazon to have it shipped in two days, lest she forget the request.  With this age group, timing is everything!

The book arrived in time for  her to open the box afterschool on a Thursday.  By Friday, she was 150 pages in and would have tried to finish if it were not for other scheduled weekend events.  On Sunday night, I caught her in her room, flashlight in hand and unwilling to part with the book without more than a few angry words, which I wisely overlooked.

And really, what I wanted to tell her was that if it weren't  for a pesky 6:00 a.m. wake-up call for school, I might have even overlooked her lack of sleep to let her finish.

On Monday evening, with tears streaming down her face, she came to me and layed the book in my hand and scooted onto my lap.  She is almost as tall as me and in recent months, has a look about her which is far more mature than her actual age.  Anytime I can get a hug like this, I hold tight and try not to think about my legs slowly numbing under the pressure.  For a split second, she is my baby again.

"Mom", she said slowly, letting the snuggle take full effect in reducing her tears.

As I push her wildly beautiful curls off her forehead, just as I have done for all of her years, I softly said, "Yes, sweet girl.  What is it?"

She looked at me with sad eyes and said, "He died, mom.  Died.  Why?"  She paused and asks again.  "I don't know why it had to happen.  He was just a kid."

I knew that she was referring to her book and nodded my head.  As I listened to her describing the characters that seemed so real, I could see her grief was as powerful as though it were truly a friend.  People blessed with the love of reading will understand that GREAT books will do that to you.

What I didn't do is offer a comparison to her life with Type 1 Diabetes.  As tempting as it was to add in a minor comment about how 'lucky' she was, I knew full-well that would be unfair.  Her struggles with T1d are personal and when they flare, to discount them or belittle their existence would be hurtful.

Surprisingly though, she drew a similar conclusion on her own, without my prompting.

"Mom", she said with eyes still damp and dewey.  "I know it could be worse for me and (Youngest Daughter).  I know it.  I  have thought about it a lot.  Especially when she (main character) said she couldn't go up the stairs.  Just a few steps, mom.  She was out of breathe."

Then, while averting my gaze, Oldest Daughter looked away and said, "But I also know how she felt when for a small minute that she didn't have to wear her oxygen tank.  She had to disconnect from it to go through security.  And sometimes, I feel like that too.  Sometimes, I want to be free of my pump and from having to deal with this.  I want a cure too."

I kept stroking her hair and nodding my head.  The tricky part of parenting is never knowing exactly how you should handle those tough conversations.

Gently, I reached down to plant a kiss on her forehead and what I left her with was this...

"I think you just discovered the importance of what we want to do in this world.  We want a cure for not just type 1 diabetes, but for all of the millions of other things that affect kids and adults.  It's a big task but just by knowing that there is more than we realize out there, you can help make a difference.  From now on, you will carry with you, the knowledge that many kids struggle with all sorts of things... some hidden, some obvious and some even invisible.  What you can do now, is to try to reach out and be the BEST YOU.  Be kind, be welcoming, be helpful and be compassionate.  It will make a difference."

She nodded her head and offered a small smile.

Then she said, "Can you get me another book?"

Saturday, May 17, 2014

Diabetes Blog Week - Naturally Sweet Sisters Saturday Snap Shots

Naturally Sweet Sisters is joining Bitter-Sweet for Diabetes Blog Week.  Today's assignment is the Saturday Snapshot for May 17th, 2014.  Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. 

What does T1D look like?  It looks a lot like a regular life, but with a twist.

T1D looks like a family.

T1D looks like two little girls.

T1D looks like a nightstand.

T1D looks like an infusion set change after a shower.

T1D looks like a linen closet.

T1D looks like s'mores.

T1D looks like a toy from a friend in the mail.  

T1D looks just like you and me.  

Friday, May 16, 2014

Diabetes Blog Week - Naturally Sweet Sisters T1D Hacks

Naturally Sweet Sisters is participating in Diabetes Blog Week with Bitter-Sweet.  Today's post for May 16th, 2014 is about Diabetes Life Hacks.  Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. 

When both of our daughters were diagnosed, managing Type 1 Diabetes became a true family affair.  It happened almost instantly as we were able to diagnose our oldest daughter by using her younger sister's blood sugar meter.  This led to our first Diabetes Life Hack - see #1 below.  

I now have several tips and tricks.  In no particular order, here are five things that make our lives easier.

1.)  Meter Sharing:  No one would ever prescribe this and certainly, I am not advocating this, but in our family, there are times that meter sharing has completely helped our blood sugar management.  It also has helped the age-old situation of never changing lancets.  If you happen to have a sister, who happens to be living with Type 1 Diabetes, than her blood sugar meter is fair game, but only if you change the lancet.  Not advising this, but just saying that I am ever so thankful that we can do this.  Nothing like shopping mall-gate where one sister forgot her entire meter bag and the other saved the day!.  Now, that is sibling love! #shoppingismorefunwithgoodbg

2.)  Keeping Infusion Sites On:  Again, this is not something that comes from a medical textbook, but if you find yourself away from home without extra infusion sites and need to make it through another couple of hours, there are a few things you can do.  Bandaids, masking tape or Scotch tape all work wonders in temporarily holding an infusion site on.  So does Vetrap, the stuff that horses use to keep their own bandages on.  Vetrap is also cheap and waterproof, in case you find yourself at pool when this happens.  None of those things handy?  Than look around for things that you might have on or in your purse.  We once used a scarf to hold on an infusion site.  Just a quick knot around the arm and I swear, she even looked fashionable. #BesidestapleshowcanIkeepthisthingon

3.)  Medical Supply Organization:  When our youngest was diagnosed, we ran out to buy all sorts of cute boxes to store her supplies in.  After she started pumping insulin and wearing a CGM, we quickly discovered that none of her cute containers could hold the oodles of boxes that we received.  All bets were off after her older sister was diagnosed.  Nothing that we could buy would store any of these items in an organized fashion.  Low and behold, we already had something... a linen closet!  Bonus, it could hold EVERYTHING and become the command center for infusion set changes, medical paperwork and even general healthcare.  Linens are now stored in each of the bedrooms and our life is much more streamlined.  #linenclosetsshouldbecalleddiabetesclosets

4.)  Party candy is pretty much the most awesome thing to have.  I used to feel worried about handling the excessive amounts of Halloween, Valentine's Day, Christmas, Birthday, Parade candy until it occurred to me that by having all of these celebrations, I was actually able to boost my low-blood sugar supply box.  Today, I simply sort through the junk, send that off with my husband to his office and keep all of the wonderful things that my kids love and that also make those hypoglycemic moments a bit easier.  #freecandymakesbghappy

5.)  Cell phones are a gift to all families that live with Type 1 Diabetes.  I say this because it is really, really, really great.  So great that I actually think it might be one of the best things to ever happen.  Kids can have a bit of freedom, school staff can make better decisions and mom and dad can worry less.  This past week, our youngest daughter wanted to take off her CGM because it felt uncomfortable.  Instead of sitting at school for another four hours, she texted me and asked.  Without hesitation, I agreed, but was also able to remind her to carefully retain the sensor (a replacement cost of $500!) and place it in her zippered backpack.  All was well and daughter was able to go back to being a kid.  Same with my oldest daughter who during that same time frame, had a low that persisted about three hours, hovering right around 70mg/dl.  She tackled it with some Smarties (thank you parade candy!) but needed a bigger oompf to make it completely go away.  She texted me, we settled on a juice with no bolus, and in another 30 minutes she felt perfect.  Problem solved.  #cellphonesrock

Hope you enjoyed my imperfect list of Diabetes Life Hacks!  Feel free to add some of your own in the comment section or on our Facebook page.

Thursday, May 15, 2014

Diabetes Blog Week: Naturally Sweet Sisters Mantra

Naturally Sweet Sisters is participating in Diabetes Blog Week with Bitter-Sweet.  Today's post is about Mantras and More for Thursday, May 15th, 2014.  Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? 

Years ago I started say one simple phrase:  Kids First, Diabetes Second.

It reminded me of the priority that I wanted our family to take.  It was short, simple and sweet.  It also stuck.

Teachers used it, our friends gently reminded me to use it and most of all, our kids grew up knowing that they were not just 'diabetics', but people that happened to live with Type 1 Diabetes.

A simple but very powerful idea.

As we move into a new era of tweens and teens, I have consciously added to our beloved mantra. While the above is still critical to our success as a family, we also have to broaden our minds to help empower our children.

"You lead Type 1 Diabetes, Type 1 Diabetes does not lead you."

Still short, simple and sweet but an idea that also resonates with our girls.  They are in charge of this life and how they choose to handle it, will help them become leaders, despite Type 1 Diabetes.

I know they think about that too.  Often, we will have conversations where they feel victorious over a management decision.  It may be a simple choice, like remembering to pre-bolus before eating an unplanned snack or a determined decision such as changing the battery on their insulin pump before it alarmed the entire classroom.

Regardless, they are sending a determined message.

Type 1 Diabetes, YOU are NOT the boss.

Wednesday, May 14, 2014

Diabetes Blog Week - What Brings Me Down

Naturally Sweet Sisters is participating in Diabetes Blog Week with Bitter- Sweet.  May is mental health month, so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

When our youngest was diagnosed at age three in 2006, it was still at the height of airport terrorism and I remember thinking about how living with Type 1 Diabetes was like living in the government's Terror Level Orange - except unlike the government chart that moved to yellow or green, we lived under orange all of the time.  Having so much stress on your shoulders can mess with your mojo to the point that you completely feel isolated and alone.  I remember living life in two hour blocks, afraid to leave the house and never once stepping away from my daughters.  Two hours was all that I could muster as it was just enough time to get to the next blood sugar check and to know that my baby was still ok.  

Some friendships faded too and I think back to that time and know that I was partly to blame.  Listening to other parents dicussing issues with lack of sleep or children not eating a balanced diet was so incomparable to our world of life and death.  Food was a life source but only with insulin and not too much.  Sleep was scary (and sometimes still is!) and I remember sleeping in short blocks for fear of my child never waking up again.  It literally felt like death hovered at every wrong parenting turn.

It was physically exhausting but even more so, emotionally exhausting.  I lost a lot of joy.  This was probably my lowest of low.  In fact, there was even one rocky moment while sitting in a Costco parking lot in which I could not even begin to control the flow of tears.  I sat for over an hour trapped by exhaustion, grief and despair of T1d.  Goodness knows what the cart return kids thought of me!

Clearly this time in our life was difficult and what made it worse was not having an expert to turn to.  Our diganosis was a first for our family.  There was no one to step in to help us find our way back.  In our little family of four, we had only each other to share the ins and outs of T1d world. 

Truly it was an oasis when we found our first support group, people who were bonafide experts.  Experts because they were also living with T1d and experienced the same rollercoaster of emotions.  Although that group ended up not being the best fit, just knowing that there were other families also living in Terror Level Orange was enough.  Like floating on a life raft, we knew that we would be able to find our way back to a new normal, eventually.  

It also helped to be able to start blogging with the Diabetes Online Community (DOC).  Even if you feel like your words would not be heard, just the act of taking time to release your feelings through pen and paper is often simple enough.  Blogging led to finding other online support groups and even more, real life groups.  All people after diagnosis of T1d,  looking for experts and creating a new normal for their own families.  

Over time and through being open about our world, we have been able to collect an entire community of friends that share our journey and support our family.  Some of our family have even stepped forward to offer their kindness and compassion too.  

Occassionally it still happens where we land on Terror Level Orange.  Mostly at night and when we are at our most fragile from lack of sleep.  By having such a broad range of friends through the DOC, I know that someone is awake and waiting for me on their life raft.  

Tuesday, May 13, 2014

Diabetes Blog Week - A Naturally Sweet Sisters Poem

Naturally Sweet Sisters is partnering with Bitter-Sweet for Diabetes Blog Week.  For Tuesday, May 13th, 2014  our assignment is to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. 

A Trade-Off

You watch with a worried stare.
Fingers move in a mechanical air.
Poke, prod, push, pull, pat.
A needle snaps back.
The pain you say?
I have life for another day.

Monday, May 12, 2014

2014 Diabetes Blog Week: Save the World

Naturally Sweet Sisters at the 2014 JDRF Gala

Naturally Sweet Sisters has teamed up with Bitter-Sweet to participate in the 2014 Diabetes Blog Week. 

From Bitter-Sweet, Monday, May 12th:  Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. 

When Naturally Sweet Sisters was conceptualized in 2008, it was as a way to help propel JDRF fundraising for our aptly named, 'Naturally Sweet Sisters' walk team.  Before that, we were known as 'Livy's Loved Ones'.  When the second diagnosis occurred, we knew that we had to up our efforts even more.

Around the same time, I also became an official mentor for newly diagnosed families.  Between the families that I friended at our JDRF gatherings as well as my newly assigned mentor families, a common theme of how isolating and negative this disease could be surfaced repeatedly.  As I would mention different challenges and our family positively overcame them, it seemed like a logical step to begin writing our stories down.  My small hope was in hearing of what we were personally going through, no family would ever feel alone or defeated.  Unintentionally, I became an advocate for an inclusive Type 1 Diabetes life.  At that moment, I started using the phrase "Kids First, Diabetes Second".

Through our years of living with Type 1 Diabetes (entering our 8th year!), we have navigated toddlerhood, elementary school and currently are in the throes of, middle school and junior high, all the while, advocating for a positive, inclusive T1d world.  It worked too.  Some areas of T1d have improved (love being part of real world support groups and virtual support groups)  and others have become more of a challenge (still lots of negative news and many sad families).

Today, with two budding tween/teens in our family, we have found ourselves adding this age group to our positive advocating efforts.  For all of these years, we were the ones keeping our children safe (and innocently unaware of the behind the scenes T1d care) by managing all of their care.  Now, our efforts are to give teens a voice on the types of care that they need, not just are responsible for.  This subtle shift in our thinking has built an audience which also believes in advocating for teens; young people who are old enough to understand what is happening but still too young to be fully responsible for all of it.

To me, nothing is worse than hearing disparaging remarks on how horrible a teen has been with their care.  So often, the frustration and blame is placed on this group of kids for things gone wrong.  While they may start to look like adults, truly their maturity is not at the same growth.  Blanket statements of blame can damage a child's self-esteem and worse, potentially create a negative self-fulfilling prophecy.  If I have to remind my kids to brush their teeth, than, I know they are not ready to be responsible for site changes, ordering supplies, all carb counts, or keeping journals of blood sugars.  There are days when it is too much for me to handle, so how could one expect a teen to take it all on?

By no means am I an expert either.  This new stage of life is full of emotional highs and lows (pun intended :) ) for all people involved in a teens life - including endocrinologists, teachers, family and friends.  Everyone has an opinion on how to fix the situation but the one without the voice is often the teen.

To underscore my point, last year, at an endocrinology appointment, our oldest daughter burst into tears after hearing her 8.2 A1c result.  After carefully listening to her concerns, we discovered that the tears came from feeling powerless and thinking that despite her best efforts, the 8.2 A1c felt like a failing grade.  Through some creative thinking, our daughter created a question and answer sheet for teens to fill out before going into the endocrinology appointment that provided a better review in their own words, of how the last three months had been - in that way, handing back more control to the teen over the situation.  Will it solve her A1c issue?  No.  Not one bit.  But does it give her stamina to continue to live with a chronic disease that requires attention every hour of every day of her life?  Absolutely.

We also upped our involvement once again with JDRF.  Not in the traditional fundraising way, but in a manner that allowed both girls to have spotlight on the positives of T1d.  They participated in volunteering at the GALA, helping with ideas for Kids for a Cure and spending time with other newly diagnosed children as a role models in managing T1d.

As a mother, I am working hard at instilling the belief in both of my children that they are leading the way in this world of T1D and sharing those stories with the world around us.  While we still say, "Kids First, Diabetes Second", we are also advocating for our girls and other teens to think, "You Lead T1D and Don't Let T1D Lead You."

My hope is that we help a few more teens along the way.

Saturday, May 10, 2014

Happy Mother's Day - Love From the 2014 JDRF Today and Tomorrow Conference

Today was a diabetes day.

It was also a day where I am reminded of how lucky I am to be on this earth with two adorable girls in my life.  I love that our life that is blended with laughter, silliness and some t1d tucked in here and there.  It is perfect in a most imperfect kind of way.

Which on the eve of a Mother's Day, makes a diabetes day, a most perfect, imperfect kind of a day.

At today's JDRF Conference, I was given a gift in meeting a new mom and her newly diagnosed teen, both of whom by the end of the conference seemed stronger and more brave; ready to tackle the ins and outs of 'their' diagnosis.  Nothing is more inspiring than seeing that happen before your eyes.  One minute we are talking about their diagnosis story and shortly after, witness her daughter smiling and saying that she thought  Teen Central "was so much fun!".

I also met a few people, who in the kindest of ways, opened their lives to inquiring young people, giving them both the optimism that they can do anything but with the reality that health is always a priority.  Thank you to Kris Freeman, Nicole Johnson and Kerri Sparling for brightening the worlds of so many today.  The words will resonate long after you have departed and will continue to inspire all that listened.

There were many experts of our world, from t1d doctors, nurses, specialists and most especially, the people living with t1d, all whom provided positivity and unity to a community that while small, is huge in heart.  Stories were shared, tissues were passed but above all, a diabetes community grew stronger today.

Perhaps, the greatest gift of all from the JDRF Conference was HOPE.  Not just today, but for tomorrow too.  I always try to write this so that it stands out because we need to be reminded that it exists and that it is alive.  HOPE keeps us connected and strong in a way that 3,650 annual blood sugar checks can not destroy in their monotony.

And not just with t1d.  HOPE  for the way that we are raising our girls and blending their world with t1d as well as life.

I am so grateful to see that they seamlessly find their footing in chronic illness by reaching out to the community that surrounds them with a hand outstretched.

The conference seems to shout,  We are here to help you!".  

I was able to snap this photo while hanging around JDRF Teen Central.

What is most fantastic, is that she willing went with me into the booth to do so.

Not to be outdone, this other superhero, allowed me to take her picture and said to tweet it out for the world to see, because in her words, "People need to see what a real superhero looks like."

Embedded image permalink

In so many ways, seeing how far we have come in our land of Type 1 Diabetes, makes this Mother's Day Eve extra sweet.

To all of the other moms, mommies, aunts, cousins, mothers, grandmothers, nannas, grandmas and motherly friends out there, may you be blessed with HOPE, super hero kids and teens that are still not too cool to be seen with you!


For more pictures, check out our twitter feed at #JDRFconf

Tuesday, May 6, 2014

MIA Update And Next Week is Diabetes Blog Week!

With so much going on, sometimes the easiest way is to just say it with photos.

After this trip:

We came back and went here:

Then, we went here:

And squeezed in some of this:

We also helped at this:

By doing this:

Now, we are doing a lot of this:

Don't forget, next with Diabetes Blog Week, thanks to Bitter-Sweet and the rest of the DOC.  Hope you will come back and read all of the Naturally Sweet Sisters posts!  See you then!