Family (Or Our Tree Is Full of Nuts)

When our little three year-old was diagnosed, my husband and I were given a crash course in type 1 diabetes management 101.

For an entire week, we lived, breathed, slept diabetes. 

Really.  I never left her bed side in the hospital once.  Which is not heoric but much needed because there is just so much to learn.

By the time our week was up, we were exhausted but somewhat (and I say that loosely) aware of what we needed to do to keep our baby alive.

That week of cramming did a few things.  First, it made us aware of how very delicate day-to-day type 1 diabetes management is and secondly, it scared everyone connected to our daughters.

Babysitting offers dried up.

Friends went away.

Grandparents, aunts and uncles...well, they didn't seem to know what to do. 

And here is the thing... my husband and I didn't know what to tell them either.  We were just caught in the trenches of diabetes war and doing our best to keep our littlest soldier alive and our family of four in-tact.

Most likely, there were already little cracks in the relationships with some of the friends and family.  Small hurts that had been brushed aside. 

Or perhaps the arrangement had strickly been business:  I'll watch your child while you attend yoga and you watch mine while I head to the grocery store.

The lack of babysitters seemed less concerning after diagnosis.  We weren't ready to leave our daughters with just anyone.  We needed to first feel confident and we then later, when we knew how to take care of our daughter's diabetes, we realized that leaving meant the caregiver needed skills.  And I don't just mean "skillz" as is in a great person to play Wii Dance with, but truly, nothing less than a nurse who could administer an injection of glucagon while at the same time doing CPR.

This was no small feat.

The friends that moved on problably would have at some point in our lives.  While seeing the friendship cease so quickly was painful, it was also a wake-up call to invest more wisely in the people that we spend our time with.

One of the worst was a friend who didn't want to come in because of the blood and needles inside.

Type 1 diabetes is a good weeder of sorts and for that, I am a bit thankful.

And then the family....

Well, this is the hardest part to discuss. 

Over the years, I have listened to so many stories from other families living with type 1 diabetes.  Many of us lost that intimate connection with our relatives.  Family outside of the core unit never received our week of intense diabetes training.  They do not know (no matter how much you try to explain) that all food has carbohydrates and must be counted.  They are also not as vested as we are in the daily grind of keeping our children with type 1 diabetes safe.  I am most certain that there is a lack of understanding of the true depth of what we go through everyday. The medical costs, the constant blood sugar monitoring, and the never -ending doctor appointments. It must seem unreal that my husband and I are waking up throughout the night to check on our 8 and 10 year old daughters or that I receive about 10 texts a day from their schools. 

We are absolutely and truly sleep-deprived.

Our date night consists of one (and only one because I have to be awake, even when I sleep) cocktail and an on-demand movie in our living room.  And that is a big night out.

Our relatives, while they love the children who have diabetes, do not understand what having diabetes means to the children, their siblings or especially, their parents. 

I think they view our never-ending exhaustion and need for control as aggressive and selfish.  After a while, they feel heartbroken, resentful which results in a tendancy to pull away from the family.

Sometimes, I don't blame them. 

Being a pancreas for someone else is a mandatory selfishness and you have to be aggressive.  If you don't, you risk going too high or too low.  We are not exactly a barrel of spontaneity over here.

Goodness knows, I am a terrible dinner guest.  I can't eat until I know both of my children have been tested, that their plates have food on them, that the food has been carb-counted and that they have been dosed. 

Even then, I am going to eyeball their plates and only pretend to be listening to dinner conversation until I am absolutely sure that my girls have eaten everything that they have dosed for or added more insulin for extra helpings/dessert.

I am so rude!

Because of this, we as caregivers, know that there is a lacking of diabetes knowledge in the people surrounding us and with that clarity, comes frustration, sadness and depression.  We feel isolated and misunderstood.

My husband and I have to resist the temptation to blame our family for not "getting" it.

They do not.

This is the most complicated of complications.

Five years in and we are still very alone in our management of our daughters' type 1 diabetes.  As the girls have gotten older, we have reconnected with babysitters and felt reassurance in the girls' own knowledge of counting carbs and bolusing.

New friends have surprised and delighted us with their willingness to learn about care and to have the girls for overnight visits.  It is nothing for one of my daughters to go on an afterschool playdate or to attend a dance or a sporting event with friends.  Life has resumed a new normal in this area.

The family is still complicated and tricky.  Much of ours lives in other states or have their own health issues to contend with.  Some have dropped off our radar all together.  And others still, continue to ask how "they" are doing in reference to my girls, but never quite using the word "diabetes". 

I still can't committ to driving to visit out of town family until I am absolutely sure that diabetes is going to behave.  Or if I do decide to go, I risk revoking my attendence at the last moment or worse, telling the girls that they have to stay home with daddy.

Which must make me seem arrogant and rude for not RSVP'ing in a timely fashion.

And certainly, none of our family has done site changes or knows how to use their new insulin pumps or their Dex Com CGMs.  And I never receive carb counts for items baked or cooked as the assumption is that I can just guess or that it doesn't really matter.

Which is a bit frightening if I think about it for too long. 

But also quite normal from what I hear in our community of type 1 diabetes.

So for this holiday season, what I will do is to silently acknowledge the imperfections of these relationships and try to remember that we are still connected through our family tree and to send out the most beautiful Christmas card featuring two beautiful, loving and inspiring little girls who still believe that all things are possible. 

And who encourage me to do the same.

And I will also make a mental note in my sleep-deprived brain to be there for my daughters when they branch off into their own families someday in the future and to accept and embrace all of the nuts that they bring home:)

Now to get my husband to do the same.






Cookies for Santa

Welcome back!  I hope all of our Naturally Sweet Sisters friends had a lovely Thanksgiving.  As remarkable as it can be, blood glucose x2 managed to stay in a decent range through the pie, potatoes, cranberries and stuffing that made it's way back to our dining table over the weekend.  For that, I am very thankful!

As I mentioned, when type 1 diabetes first came into our world, it was Christmas time.  As new parents to the "type 1 diabetes with holidays" scene, the dilemma of leaving cookies for Santa instantly presented a huge problem. 

We had just returned from a week long stay at our children's hospital and were immediately plunging into the first Christmas, without a clue as to what we were doing.

Seriously.

Should we leave cookies out if we weren't even sure if our newly diagnosed youngest daughter should be eating cookies in the first place?  And how many carbs were in a frosted sugar cookie with sprinkles? 

If we only left out carrots, would that be ok?  Or would that present a problem because carrots had carbs as well?  And would Santa have to wrestle with Rudolph to eat them? 

What to do?  What to do?

Because of our worries and fears, we did nothing.  We ended up leaving Santa a very nice drawing from each daughter and absolutely no food. Which was fine for our 3 and 5 year-old.  They were less worried about what Santa was receiving than what they would be receiving the next morning.

To us as parents, doing nothing just didn't feel right. 

This was long before another one of our great a-ha moments:  kids first, diabetes second.

From that point, we begin to encounter many more holidays. 

Valentines Day, Easter, Fourth of July (and as a side note, did you even think of all of the food before type 1 diabetes?), birthdays, Halloween, Thanksgiving and the list goes on.

What we had to learn was to celebrate them all with very little change and perhaps only modifying a bit with common sense. 

We had to get over our fear.

Yes, there will be mistakes and yes, there will be moments that we wished had gone better.  We are not perfect and even though we attempt it everyday, we are not pancreases.

We do however, have only one shot at that particular day of the year.  We also know that our children will only be little one time.  So, with a little diabetes skill and knowledge, we are out there, making memories that will last a lifetime.

To survive the onslaught of holiday fun, here are a few helpful tips:

1.)  Put everything on a plate.  It is a visual to help you to remember to count portion size and add up all of the carbs.  It also makes you think about bolusing if you are an insulin pump. 

2.)  Consider combo bolusing.  If you see a buffet that is loaded with things that you love but you may want to graze and mingle.  Give yourself a bolus spread out over an hour and delivering half of your insulin now, and half of your insulin later.  My girls love to do this because they feel like they are less bogged down by the diabetes and more able to relax and enjoy.  Just remember to eat all of the carbs that you bolused for.  Holding that plate in your hand until you are done helps to keep that reminder in check.

3.)  Try that thing that you is calling your name, even if you are unsure of the carb counts.  We often encourage the girls to sample new foods, especially the ones that are visually appealing.  I have learned a few things... one, sometimes that food is so delicious and so wonderful that you can't believe you haven't ever tried it before and sometimes, it stinks and you decide you never want to see, smell or taste it again!  I know this sounds like the only two choices, but there is a third and that is not eating, obsessing about it and then over-eating something that you didn't want in the first place.  Raising two little girls makes me very aware of the third possibility and it is one that I want to keep them far, far, far away from.

4.)  Enjoy the holidays.  That first Christmas post diagnosis was terrible.  I spent all of my energy worrying about the food aspect.  Quite surprisingly, the food is only a tiny bit of what makes each holiday so wonderful.  I now look at it from a bigger picture.  The magic that we make is much more enticing.  From writing and visiting Santa, to shopping for special gifts, to attending holiday parades and shows, watching old Christmas movies and decorating the trees... well you get the picture, none of that is about type 1 diabetes.  It is about having fun.

5.)  Santa does like cookies.  Don't fret.  A cookie carb is easily counted for Santa and I hear that he really loves peanut butter kiss cookies just like my husband. 

Happy Thanksgiving (or Happy Eating Holiday!)

Happy Thanksgiving!

The 2011 Naturally Sweet Sisters Thankful List:

1.)  Insulin.
2.)  We are healthy.
3.)  We have a home.
4.)  We are together.
5.)  We are happy.
6.)  Turkey is carb free.
7.)  Pumpkin pie is delicious.
8.)  Tomorrow is a national shopping day.
9.)  The Lions are playing football.
10.)  And we are so thankful for our Naturally Sweet Sisters extended family! 

Diabetes Craft Project - Bling Your Site



Here is a great Thanksgiving break project for you and your children with diabetes.

Years ago, in my ongoing quest to take the cold, drab and sterile look out of type 1 diabetes for my very vibrant and sweet newly diagnosed three year-old, I stumbled across this neat product.

It is a sticker that can be placed over the infusion set adhesive. 



 There, isn't that better?


From the Groovy Patch Website



But these cute little stickers are pretty expensive.  12 stickers for $11.95.

And as a 'now' 8 and 10 year-old tend to think, there isn't enough design choices.  When you do choose, the stickers arrive in packs of four and there are no duplicates.  That means that the popular pattern can't be split for two girls to share.  Someone always feels left out.

Which then makes two sisters feel bad.

So as a commander-in-chief of our diabetes world, I thought why couldn't any sticker or scrapbook paper work for a special infusion site? 

And this is what the Naturally Sweet Sisters came up with.

Love!

Bling Your Site Craft Items Needed:  Old infusion set with adhesive still intact, scrapbook paper, gemstones (optional), IV3000, scissors, pencil for tracing.

1.)  First, take a piece of any kind of beautifully patterned scrapbook paper.  For our examples, we used rubber duckies and pink/blue plaid.

2.)  Trace the shape of the adhesive tape from an old infusion site onto the scrapbook paper. 

3.)  Cut out the center shape of the plastic cannula attachment to tubing.  This will allow the paper to be placed over the infusion site.  Try the paper on your old site to ensure that it fits.  We had to trim a bit more off to get a nice fit.    

4.)  Next, pick up an IV3000 clear sticky tape, cut a second hole (just like above) to place over the plastic cannula attachment. 

5.)  Now you are ready!  Pick your new infusion set location.  The girls chose their arm to show off the colors and decided on wearing short sleeve shirts the next day. 

After the site is injected, place your custom made scrapbook paper over the infusion site.  Add a gemstone if you want and then place the IV3000 clear sticky tape over the entire site and stickers/scrapbook paper.  The IV3000 will hold everything on for at least one or two days.

4.)  Be sure to smooth the tape down over the paper and reconnect your insulin pump.  Admire your beautiful new infusion set.

Cost is about $.10 for a 2 inch square of paper and most likely free for the IV3000 tape as we all seem to have an abundance of those in our supply closets.

Also remember that this won't hold up in the water, so if you are swimming or bathing, be sure to do this on the last day of your site change and take it off as soon as it gets wet.  We did ours right after the nightly shower before bed.  It was a great way to relax and wind down, even with getting a needle poke. 

Sometimes, a little fun helps make those boo-boos a little bit better!

Guess Who Is Coming to Town?

Ho! Ho! Ho! 

Santa Claus has arrived!

This gentle giant in a red suit has worked his way into one prominent family photo for a decade.  He has been with us through infancy, screaming toddlerhood and now, the uncertain years.

We adore him!

Upon Santa's arrival, we once again trotted over to see him.  You might think it is early, but as our tradition dictates, we visit as soon as the red velvet ropes are opened.  No lines, no waiting, no crying.  Because of this, it is a whole lot more fun for the four of us.

Something secret about going early...  two times now, our children have been diagnosed with type 1 diabetes right before Christmas.  If we hadn't gone early, we would have missed out on those two years. 

Now are you thinking, "Why on earth would this crazy family keep going to see Santa when he sounds like he is a curse to their family???"

Or maybe you are thinking, "Aha!  Now we know the cause of type 1 diabetes!  Forget vitamin D deficiency or environmental factors!  Has anyone done a study involving the fibers in those red suits?"

Sure.  We are probably nutty.  Well, we ARE nutty.  Maybe that is another coping mechanism.  Truly, for us, that is the best part of the holidays.  Having lots of fun and making memories! 

Our memories offset the bad of the diagnosis (x2) with some good and certainly, normalcy.  My daughters do not look back on this time of year as a curse, but as a magical time filled with lots of holiday cheer.  For that, I am ever grateful to Mr. Claus (and a whole lot of other fun holiday traditions which will thus be described later).

Since this is the season for giving, here is another one of those magical epiphany moments that seemed to have arrived with diabetes.

If there is something you want to do in life, don't wait.  Seize the moment and make it happen.  Life is short and ever changing.  Our memories are the only constant.  Fill them up with happy ones.

Happy Holidays!

Is Santa Bringing You What You Want?? Initials, Inc. Can!

Holiday Savings Discount Alert!

One of our JDRF Walk to Cure Diabetes sponsors, Kari Fitzgerald at Initials, INC is offering our Naturally Sweet Sisters readers a chance to save on holiday shopping.

This is ca-ute!  Seriously, cute products and personalized products! I wrote all about my love of these bags here.  And just so you know.. that little bag has come in handy several times!  We have it currently latched around the headrest of the backseat.  Perfect for two sisters to access whenever the need (or low) arises.  LOVE!

Check out their products online at http://www.mybagsrock.com/.

Here is a sampling of some of the cutie-patootie pieces. 

You can buy this little cutie called the Flapper, perfect for Holiday marathon shopping.



or this beautiful set for that winter vacation that you are taking.



 or to keep that holiday wine that only the cook knows about chillin' in the kitchen.




or to keep all of that type 1 diabetes stuff looking fabulous like we did at Naturally Sweet Sisters.





Naturally Sweet Sisters Blog readers can get a 15% discount on any orders placed through Dec. 2nd, 2011. Whoo-hoo!

Orders will be placed so that they arrive in... plenty of time for Christmas gift-giving:)

To order, contact Kari Fitzgerald at
734.308.6701
kari@mybagsrock.com
facebook.com/MyBagsRock

Be sure to use the code NATURALLY SWEET SISTERS to get your discount!

And again, thank you to Kari at Initials, Inc. for helping to get us one step closer to a cure for type 1 diabetes!





The Bottomless Pit (or Pit Happens!)




Today was one of those days where my daughters simply could not get enough food. 

It started with this morning's breakfast:  1/2 cup of raw oats, microwaved with a healthy dose of milk, brown sugar and cinnamon.  The bowl of oatmeal was washed down with not the normal one, but two glasses of milk.

Less than a half hour later, youngest daughter walks back into the kitchen and grabs her meter.  This is my cue that she is either feeling low or hungry.  As she checks her blood sugar, I see her looking over to our pantry. 

The meter rings out a bg of 212.

Not surprising as they just ate.

"Mom, I am hunnnngrrrry.  Can I eat this?", youngest daughter whines while already opening a granola bar.

"Um, sure.  If you are hungry.  Just count carbs and dose."

"I know.  I know." Youngest daughter rolls her eyes which is comical because she doesn't quite grasp the way to do it.  Instead, she looks up and down. 

But I get the picture.  She knows.

One of our rules is that the girls can eat anytime they want, as long as they check their blood sugars, count carbs and dose the correct amount of insulin.

I think I must sound annoying because I tend to say it.  A lot. 

I can't help it.  I am mama.

In a second of the pump beeping that first unit of insulin, oldest daughter comes racing into the kitchen. 

The beep sound cuts through any noise, any time, any where.  If my children were lost, I think I would whip out the meter to cue them on the way to get back.

"I am hungry too!", says oldest daughter grabbing her tester and a granola bar simultaneously. 

An hour or so later, the girls are back.  They are giggling and talking about making something.  I am two rooms away but I hear the words, "lunch", "starving" and "hot cocoa". 

I shout through the walls to see what they are up to.  Silence and then more giggles.

As I walk into the kitchen, the girls are busy making cocoa.  The blood sugar meters are on the countertop and lancet caps and strips are mixed in with chocolate and mini marshmallows. 

"16 carbs and I already dosed Mom!", says my oldest daughter proudly beaming up at me.  She has a chocolate smudge across her nose and a big grin to go with it.   

My youngest daughter is tucked into the refrigerator.  She is still so small that she nearly has to climb shelves to reach up.  Before I can get over to help her, she is holding up a spray can of whipped topping.

"Free!", she says. 

But a lunch is not just hot cocoa, so I serve up some cheese, lunch meat and Ritz crackers to add a little extra protein.  I foolishly think that this should contain their hunger for at least a few more hours.

The day continues on with more eating and more testing and more dosing.

Two more snacks and at last dinner.  I make pulled bbq chicken which usually brings out a "yuck" or two, but tonight, they eat it all. 

At this point, I am eyeballing their stomachs.  How is it all fitting in there?  Where is the food going?"

Blood sugar numbers stay stable and nothing goes too high or too low.  Which is a nice surprise in the middle of this eating party.

By bed time and with a last minute bedtime snack of a bowl of cereal, I am exhausted.

The constant monitoring of everything that has been going into their mouths is exhausting. 

But instead of focusing on the diabetes, I think of my neighbor who has three large growing boys.

And I wonder if it is like this at their house?

And should I measure the girls to see if they really do grow in their sleep?





Extra! Extra! Read All About It!

In the Thursday, November 17th, 2011, Detroit Free Press;

Sometimes funny posts just write themselves.

Pretend Fundraiser = Pretend Cure

Our daughters love to play store, school and beauty boutique.

We get coupons in our family mailbox that say things like "50% off Make-up" or "Field Trip Tomorrow".

Their imagination is endless.

Tonight, there happened to be something a little different going on.

It was a pretend fundraiser.

Don't you wish we had more than a pretend cure?

If You Can Catch A Fish (Can You Catch Blood Sugars)




It is 3:42 a.m..

One of the baby monitors located next to my head bleeps out a loud sounding alarm.

"ZEEEEEEEEEEEP!" 

My head feels like a million pounds and while my heart immediately races, I have zero energy to push off the covers and get out of the bed.

"ZEEEEEEEEEEEP!"

One second more and I know I must move.  The cool air hits with full force as I struggle to stand and I am instantly awake.  Grabbing the latern from the hallway mini-fridge, I open oldest daughter's bedroom door.

Not knowing which child had the alarm, I reach under her warm blankets in search of a hidden Continuous Glucose Monitor (CGM) to check for rising or lowering arrows or a warning of hypoglycemia.

Her CGM reads out a blood glucose of 117 and I quickly check the trend line.... smooth as can be.  As I put it back, I know I have woken her.  She sighs heavily and pulls the covers back up.  I feel saddened that she doesn't get a full night of rest and I quietly kiss her before leaving the room.

One room over, youngest daughter has been restless.  Bed covers are scattered all over the floor.  I know this is not a good sign and quickly move the lantern closer to see her CGM.  The warning reads out and I push "Ok" to see the number... 44 and two arrows pointing downward. 

Without hesitating, I grab her blood sugar meter and click the lancing device down on her finger.  She is still and only makes a motion after she hears the meter beep that it is done.  "71". 

Unsure of which number to accept, I grab a juice box from the hallway mini-fridge and gently prod youngest daughter into drinking the 15 carbs.  Without opening her eyes, she does in a single gulp.  She tries to pull the covers up but I am not done.  I still need to re-test and put away her CGM into the pump pouch under her PJs.  She cries a bit because she is exhausted and just wants to sleep.

I am even more saddened to think that this intrusion is causing both of my daughters to lose sleep.

A few minutes later and youngest daughter is left with a gentle kiss to sleep again.  As I go back into my bedroom and crawl back into my still warm covers, the clock reads out 4:16 a.m. 

In a half an hour, I potentially saved a life (once again). 

In the morning, I will not speak of it to anyone because no one (outside of our type 1 diabetes world) would ever understand.

In the evening, I will try to encourage my two daughters to go to bed early because while they do not remember what happens in the middle of the night, I do.

Catching blood sugars is exhausting.

Blogs, Blogs, Blogs (or blah, blah, blah)

When I first started this blog, I was full of self-doubt.  After all, the Diabetic Online Community (DOC) already has a tremendous assortment of well written web-sites.  In a way, adding a new one seemed a bit like contributing self-serving noise to the ever growing DOC.. 

Who would even find us at Naturally Sweet Sisters?

Who would want to?

(insert crickets)

Then I received an email thanking me for putting a voice (and a smile) to her daily ins and outs of raising a family WITH type 1 diabetes.

So I thought about it a little.  Well, a lot. 

And I realized that what we are sharing is actually different. 

It was easier to figure it out by realizing what we are NOT. 

We are NOT sterile medical information. 
We are NOT everything is fine.
We are NOT grief.
We are NOT oppositional.
We are NOT giving in.
We are NOT giving up.
We are NOT just getting by. 

That leaves living.

Living a life that just happens to include type 1 diabetes.

And I find it very interesting that JDRF is re-defining themselves and including living in what they do.

With a new logo.

And new data.


                                             Piper has type 1 diabetes.

One in twenty people like Piper
will die from low blood sugar.

                 In fact, kids and adults are dying every day from low
                 blood sugar or complications caused by type 1 diabetes.
                 In the next few weeks, the FDA has a chance to show
                 it is leading the world in medical innovation, not
                 standing in its way. It will lay out the pathway to bring to
                 market the first artificial pancreas, a life saving 
                 technology now under development, and the most 
                 revolutionary treatment in diabetes since the discovery
                 of insulin. Three million kids, teens, and adults with type 1
                 diabetes are counting on the FDA to get it right.
                 Our lives and health are at stake.

                                                         

And new partnerships.

From the JDRF PRESS RELEASE:
NEW YORK, NY, November 2, 2011 -- JDRF and The Leona M. and Harry B. Helmsley Charitable Trust, two of the largest non-government funders of type 1 diabetes (T1D) programs, announced today that they have formalized a collaboration that will foster a new level of cooperation between the organizations. The goal of the collaboration is to accelerate the pace of research and development to deliver better treatments, devices, and diagnostics for improving the lives of people with T1D. The first two co-funded grants as part of the collaboration were also announced today.


So how does that leave us?

We are going to continue living.

Waiting for a cure is not an option. 

As precious time evolves, my children are going to continue to grow and blossom.  We need to live in the now of the moment.  Their skills and ability are changing every single moment of the day.  I understand "growing in your sleep".  It does happen.

Which is not to say that we don't want a cure.  Because we do.  We really do.

In the meantime, we must LIVE. 

Here is what defines Naturally Sweet Sisters:

Yes, we are a family who put kids first, diabetes second. 
Yes, we are a collections of stories of rambling our way through the world. 
Yes, we are going to make mistakes.
Yes, we are going to have success.
Yes, we are unapologetic in finding humor in the darkest of moments.
Yes, we are eternally optimistic.
Yes, we are eternally realistic too.
Yes, we are going to have fear and worry and guilt and anger.

But we are also going to have joy, laughter, excitement and encouragement.

We are LIVING with type 1 diabetes.

And most important, at the end of the day, we recognize that this life is a journey.  Our best efforts are not defined by any one moment or thing.  Our family is not defeated.  We are strengthened.

We are so thankful you joined us.

CGM Love

Both of our Naturally Sweet Sisters pump insulin with an Animas Ping and use Dexcom Continuous Glucose Monitors (CGMs). 

Unlike an insulin pump, the CGM is not required to keep our daughters alive.  The CGM can be worn or removed at leisure.  The data is what is most important.  We look for trends and try to spot times of day in which we can raise or lower basal insulin.

Tonight, after receiving a call from school  and learning that youngest daughter had a 58 blood glucose (BG) in the classroom, we decided to put the CGM's back on.

This is especially important after learning that youngest daughter didn't recognize the feeling of becoming hypoglycemic. 

Which is normal and also scary.

For her.  For her aide.  For her teacher.  And most of all, for our little family.

Just like The Three Musketeers, one of our family motto's is:

All for one and one for all

So oldest daughter also put on a CGM with her little sister, at the same time, in the same area.

But because we are a silly sort of family, we had to make jokes about the large inserter device after it had been taped down but not deployed.

And while the CGM needle inserter hurt our beautiful girls, it also made them laugh.

Because something so weird as this,

Hanging off your behind.


 Is really funny.

Who You Gonna Call?





I want to share with you a story that my oldest daughter told me today.

" Today was Safety Day at school.  This means that a group of workers like ambulance and helicopter paramedics, police officers with drug dogs and lots of firemen talked to us.  My friend and I were sitting on the floor listening to the paramedics.  This one lady paramedic was telling us about the things she carries.  She said, "Probably some of you have heard of diabetes because you have a grandma or a grandpa who have it.  This is called a glucometer and we use it to check blood sugar."  My friend (who also has type 1 diabetes) raised her hand and said, "I know about diabetes because I have Juvenile Diabetes."  The lady paramedic said, "Oh, then you have a grandparent with diabetes." 

Mom, do we really want that lady coming to our house if we call 911? "

World Diabetes Day

The month of November has been diagnosed National Diabetes Awareness Month and November 14 has been specified as World Diabetes Day.

Having an annual calendar designation is important in order to promote public awareness of all that entails type 1 diabetes. 

Comprising hundreds of campaigns, activities, screenings, lecture, meetings and more, World Diabetes Day is proving internationally effective in spreading the message about diabetes.

It is also tricky.

Today, most people I know will not be discussing World Diabetes Day. 

There will not be television segments showing men wearing high heels or three-day walks garnering huge community support.

There will not be pretty ribbons or plastic bracelets or cute sayings on shirts.

If World Diabetes Day is mentioned, most likely there will be discussion of the invention of insulin by Canadian scientists Frederick Banting and Charles Best on July 27, 1921.

And someone will probably think that insulin is a cure.

Or maybe there will be a news segment highlighting the epidemic of obesity in our children and the effects of being overweight ultimately leading to type 2 diabetes.

And someone will probably think that our type 1 diabetes, an autoimmune disease with unknown origin, is caused the same way. 

Or maybe a picture will be taken of the Eiffel Tower or the Empire State Building lit at night with blue lights. 

And someone will just think that is pretty, not realizing the intention of connecting the blue circle logo of World Diabetes Day.

Nothing will change. 

Someone will celebrate an anniversary of their diagnosis date.

Someone will grieve the passing of a loved one who had been diagnosed with type 1 diabetes.

Because this is our grim reality and yes, it is a bit disheartening and a whole lot sad.

But what will be happening is this.

Two little girls will wake up with a big smile, ready for another fun day.   They will enjoy hearing that it is World Diabetes Day and will ask how we will celebrate.  I will get out a candle for each of them to make a wish and we will laugh about what we would do with ourselves when type 1 diabetes is cured. 

And then we will go on our about our day.  Juggling the food, activity and insulin that we must do every single day, whether it is World Diabetes Day or any other.

Because type 1 diabetes does not take a day off. 

Ever.

And so if we must spread awareness, perhaps this is what we should say...

A cure can not come soon enough.

Sugar Busters

A few months ago, it occurred to me that our current arrangement of keeping snacks in the car, just wasn't working.

In my vehicle, which is typically the family vehicle, we have a center console filled with things like a tire guage, a mini band-aid kit, two cell phone car chargers, miscellaneous receipts, a couple of pieces of stale gum and an assortment of smooshed snacks. 

Even during a low blood-sugar episode, my kids have discerning tastes.  No one wants to eat a granola bar that remembles bird seed. 

And there is another unfortunate quandry.  With type 1 diabetes, sometimes, you just HAVE to eat that bird seed granola bar, even though you do not want to.

Then, I had a thought.





What if I actually had something to keep all of those low blood sugar goodies nice and fresh?

Brilliant!

One of my girlfriend's sells personalized bags and purses through Initials, Inc.. 

After meeting our family and hearing our story of both girls being diagnosed with type 1 diabetes, my girlfriend felt equally compelled to make a difference and help work towards better type 1 diabetes technology and ultimately, finding a cure.  She graciously offered to partner with Naturally Sweet Sisters and agreed to donate 100% of her proceeds back to our JDRF.org to walk team Naturally Sweet Sisters.  We raised $443.48 for our 2011 walk team just from her bags, purses and home decor.

That random act of kindness will forever be remembered. 

To do my part, I of course, had to shop too. 

And this is the bag that I had made.  It is called the Pack-It Pocket and measures 11" x 5 1/2".  There is a loop handle on the side that can go around a wrist or loop around another bag.  In my case, I looped it around the backseat door handle so that my girls can easily access it while I am driving.

I had it embroidered with the words "Sugar Buster" in brown embroidered floss to keep it fun!  But you can put on anything you want.

As you can see, the Pack-It holds quite an assortment of snacks and fast acting glucose products.  The inside is completely open and can hold all of this...

And there is room for much more.

You can personalize any of the bags with whatever you would like and get this, personalization is always free!  If you would like to check out their product line, head over to http://www.mybagsrock.com/.

The girls love it!  And again, another way for type 1 diabetes to be a little less medically sterile and a whole lot more fun.

Like we say, Kids First, Diabetes Second!

If anyone out there has additional ideas for managing fast acting sugar in cars, please leave a comment below.  This is one area where I am always looking for ideas and I am sure others are too.

Lost and Found (Can You Find A Bolus?)




To give you a frame of reference for this post, type 1 diabetes is a giant brain sucker.  I imagine it to be green and kinda like something you would see on a classic movie, devouring Tokyo.  Except I am Tokyo.  At least, my brain is Tokyo.

Every morning, I wake up and do a two-hour rush of chores in order to send my Naturally Sweet Sisters off to school.

It starts with waking up oldest daughter, marching her out of her warm bed and into clean clothes that were hopefully laid out the night before.  Then after a quick beauty routine, she is down to the kitchen to eat.

The meal process is seemingly simple enough: 

1.)  Check blood sugar.

2.)  Measure breakfast food. 

3.)  Count carbohydrates in food.

4.)  Calculate insulin dosage.

5.)  Bolus.

6.)  Brush teeth.

But did you catch that hidden phrase?

No, not brush teeth.  Had you there, didn't I?

Seemingly simple.

Back to the morning rush, after prepping oldest daughter, we wake up youngest daughter and head out to the car for a quick commute to the middle school.  Once back home, we start the meal process for the youngest daughter.

1.)  Check blood sugar.

2.)  Measure breakfast food. 

3.)  Count carbohydrates in food.

4.)  Calculate insulin dosage.

5.)  Bolus.

6.)  Brush teeth.

We do this every single day (minus the rush to school) and every single time the girls eat anything.

As you know, type 1 diabetes is never-ending.  It is a constant juggle of assumptions (like hormones, activity, emotions and I swear -weather), along with a balance of insulin to food.

It is a bit like being trapped in that movie Groundhogs Day with Bill Murray.  Except, with the green monster devouring Puxatawny, PA or maybe Bill's brain.





So are you ready for this?

Sometimes, we mess up. 

And when we say "we", I really do mean we.  The "we" is our entire family of a dad, mom, oldest daughter, youngest daughter and a cat. 

Then, my brain mushed out.

I sent youngest daughter to school without bolusing for her breakfast. 

Her blood sugar wasn't corrected until an hour later and by then, her numbers had skyrocketed.  Our school aide wasn't happy with me.  Youngest daughter wasn't happy with me.  And I certainly wasn't happy with me.

And so the "we", really is me.

Yes.  I do sometimes mess up.  Because being a pancreas for someone else (x2) is hard.  Somewhere in that mushy brain of mine is an entire list of type 1 diabetes chores that can never, ever be forgotten.

Like, injecting new infusion sites, loading insulin cartridges, remembering to order more supplies, changing pump batteries, checking blood sugars every 2-4 hours, downloading meters and pumps, troubleshooting bent cannulas or clogged tubing, remembering extra snacks, alcohol wipes, or extra sticky IV 3000s. 

These are just a few of the daily chores.

However, this is a very real life that we are living.  The kind that involves school, ballet, sports, after-school dances, homework, household chores and the need to feed our family cat.  We aren't always going to remember every single thing that has to be done, at least without getting some help.

This story really has no great outcome.  The next day, I woke up and did indeed remember to bolus as I am sure, I won't forget for quite some time.  I actually had to refrain from setting this as my facebook status because the rest of the non-type 1 diabetes world would probably think I am a bit looney for forgetting in the first place.

Instead, I poured myself a cup of coffee with the extra good kind of creamer and gave myself a big pat on the back for remembering, in spite of my brain being mush.  Even with making mistakes, I am also doing one heck of a job as someone elses pancreas (x2). 

I survived the big green brain eating monster of type 1 diabetes.  Now that is a real miracle of modern medicine. 





Get Your Pump On (or How to Look Cool!)

Insulin Pumps.

You have to wear them.  Everyday.  All day.  24/7. 

Youngest daughter has been pumping insulin for five years - with no time off .  That means, she has been wearing a pump for 1,760 days straight. 

She has been with her pink Pumpy since she was three years old.

Oldest daughter started pumping a little later in her life as she wasn't diagnosed until age 8, when she started immediately on Pumpster. 

Having been through raising an 8 year-old once, I am familiar with the ever present need of feeling good about one's self.  These are the pre-teen years, often referred to as tweens. 

A few months ago, we re-distributed some of my girls' once much-loved pump pouches to other friends with children who have type 1 diabetes.  We said good-bye to her beloved Hello Kitty pouch and her Elmo pouch.  SpongeBob left along with an adorable doll-faced pouch.  Anything consider "babyish" to the tweens went right out the door. 

It was a little sad to see and I resisted the temptation to stuff one of the pouches in the baby box.  No, these pouches needed to be used to help other children feel good about themselves and carrying around their own Pumpys (or Pumpsters).  Just like it did when mine were younger.

Then, this week, we found something new...

See that adorable little panda bear on youngest daughter?  Oldest daughter is wearing an owl (hidden behind her hand).  Well, those pouches are considered cool. 

After school, both girls came home chattering about how great it is to wear an insulin pump because of their cool pouches.  Apparently, it was the big deal of the day and both girls were so excited to tell me that their friends wanted to buy one to wear to school the next day.

Which really makes day 1,761 of wearing an insulin pump so much better!  Because the lesson for these two Naturally Sweet Sisters is this...

Often what makes you feel different is what everyone else wants in order to fit in.

In Her Pockets (Laundry Treasures)

My youngest daughter loves to find treasure.  Anything that sparkles or glistens on her travels is fair game.  Quite often, it will be a simple thread or a small button.  Forgettable things that others wouldn't bother to pick up.

She is a curator for a personal collection of pennies, rocks and erasers.  Often her art will be expressed through the hodgepodge of things that she has discovered.  The ordinary is extraordinary and even a shred of glitter is magic.

I love this about her. 

As I emptied her pockets in preparation of starting a load of laundry, two extra items popped out at me.

Do you see them?

Sometimes, the best moments in life filled with the ever-present type 1 diabetes, are the most random. 

In spite of her "extras", she is just a little girl with a big imagination and a love of finding treasure.

Retail Therapy (Everyone Has Something)

Quite often, my thoughts reflect by writing of what is actually happening around the Naturally Sweet Sisters household.  Something about this time of year, (hmmmm, could it be two little girls happened to both be diagnosed in the late fall???) causes me to remember right back to the beginning.

I have a sacred (and silly) annual girlfriend tradition.  One day, early in the holiday shopping season, my girlfriend and I head out to a local college campus craft bazaar and we shop until literally, we have no energy left.  At which point, we pick ourselves up and enjoy a cocktail and a decadent dessert and start shopping again.  This is my most fun girlfriend moment all year. 

Together, my friend and I are planning this day for 2011.  I think our tradition totals something like 15 years.  Throughout this tradition, we have brought in other dear friends and siblings, but the two of us remain the constant shopping pair.  Our friendship has been on-going since we were five and if you think that 15 years is a long time, well, I can't share with how long the friendship is.... but it is LONG my friends! I mean, we are almost 25 now. (insert snickering here).

I can tell this girlfriend of mine anything.  We grew up together and I know her family as well as my own.  She gets me in a way that very few do.  She was in my wedding and I in hers.  Our husbands are friends and our children truly adore each other.  And we love to shop.  Need I say more?

So it was no surprise five years ago, while we shopped of course, that I fell apart in tears, talking about my worries regarding youngest daughter's health.  I did not know at that point that the ultimate diagnosis would be type 1 diabetes, I only knew that something was very, very wrong. 

Let me stop right here for a moment.  This is sounding as though it is a sad story.  And maybe it once was.  This story is however, one of my great a-ha moments.

Everyone has something.

Everyone has something.

Everyone has something.

At the time, my dear friend did not have any children of her own.  So while that moment of discussion was about youngest daughter, there were also later moments of holding hands and listening to her tears from unfulfilled hopes and dreams of a having a family.

Everyone has something.

Fast forward to the following year, my dear friend listens while I grieve of our diagnosis and I in turn listen while she once again wishes for her happily-ever-after. Our pain is plenty and we lean on each other, making plans for positive life change in the New Year.  Individually, we are strong women, but together, we are invincible.

While our life path is not intersecting at all points, it is running parallel.  As friends, even though we do not walk in each other's shoes, we can certainly try them on for a time or two.

Everyone has something.

This is not to diminish in anyway, the gut-wrenching reality of dealing with type 1 diabetes.  It is though, a reminder to me, that while my pain is very real, other friends have their own burdens which should not be diminished either. 

As my girlfriend stepped up to help me through the diagnosis, I tried to return the favor.  We listened to each other and we point out the small victories... an insulin pump and a willing adoption agency.  The grief turns to laughter and before we know it, we are back at our holiday shopping, wondering if we can convince our husbands to wear matching Christmas morning PJ's?

Everyone has something.

Understanding this has become one of main my strategies of coping.  I have taught the girls this through our travels and introducing them to a wide variety of people and environments.  Sometimes, the most eye opening moments are ones that I would barely give a passing glance.  Like the day where my oldest daughter turned to me and said, "Everyone has something." Looking to see what she meant, I follow her gaze to a baby with a cleft-lip awaiting her turn at the doctor's office.  My oldest daughters eyes were shining with tears and I suddenly realized the power of seeing another child dealing with something so unthinkable to a kid blessed with no birth marks at all.

Five years from that first mind-blowing diagnosis, our family life is more stable.  Both of my daughters have been diagnosed and we have moved away from the initial shock and awe.  After a time and bit more of dashed hopes, my friend did adopt a beautiful little girl.  Her family is not yet complete and she is embarking on another life journey to bring home a second child at the end of the year. 

I will be here for her as she has been here for me.

And as we shop this year, we will marvel at how far we have come and at all of the twists and turns along our route.  We will grieve a little, we will laugh even more and we will feel whole once again.

Neither one of us will ever be alone.

Which makes me love this silly girlfriend tradition even more.