Tuesday, July 31, 2012

Those Sisters with Diabetes

A friend of mine introduced me to another mom at the elementary school.  Although we travel within the same circles, our paths had not directly crossed before, so this was our first direct meeting.  We smiled, shook hands and politely chatted about our children.

Then she said, "Oh, yes.  You are the mother to 'those sisters with diabetes'."

What? At six years in post diagnosis, I didn't really think about our family in that manner. 

Maybe those cute girls or maybe those sisters that race their bikes up and down the street ten times a day.  But as 'those sisters with diabetes'?

It seems so... limiting.

But I have to wonder, is this how the world narrowly views us?

And how do we inadvertently view the world?  Am I also to blame for this?

Maybe it is time for a paradigm shift.

How do I help make that happen?

Saturday, July 28, 2012

Over A Decade Ago.... Happy Birthday Oldest Daughter

Over a decade ago, on this very day, I was due with my darling oldest daughter.  As a first time mom, I was nervous and anxious while waiting for that magical moment when I could finally hold my brand new baby in my arms.  I envisioned our welcoming moment as one of serenity and calm while my darling husband cooed sweet nothings at us both.

Um.  Well.  In reality, not so much.

My first lesson of parenting was realizing that things may not go as planned.

From the story that I tell my oldest daughter about that night, and then day, and then another day (yes, the lovely two and half days of labor), she simply made her arrival when she decided she was good and ready.  Not a moment too soon. 

It suits her personality perfectly.  Those extra days in the 'mommy oven' baked her to perfection.  She is more mature, responsible and kinder than anyone I know. 

This little girl, really not so little anymore, has taught me an about having an abundance of love, courage and perseverance.   She has also taught me that even when there are big changes in the course of our lives, that those changes might actually be more meaningful and enlightening than we could have ever predicted.

In learning to embrace type 1 diabetes, in her case, the ultimate unexpected after already having a sibling diagnosed, she was still able to find joy where others would find none. 

Overhearing her chatter before her friends arrived for her birthday party tonight, I was reminded about her happy heart.  This might be her biggest strength of all; a positive attitude.  Because certainly, T1D is here to celebrate this birthday and most likely, more to come.  Just not FOREVER.

"Hey, who wants to race me on the meter?"

"I love my pump.  It matches my outfit perfectly!"

"A. is coming and we can count carbs together.  How fun is that?"

I say time and time again that these girls of mine are not ordinary children, but extraordinary.  Kindness, positive attitudes, maturity are probably not so rare, but combined with someone living with T1D - the most unrelenting and grinding of diseases, puts them in an ellusive category all of their own.

This is a gift, I think. 

While I never give up hope for a cure, I also never stop being thankful for the gifts that we do have. 

To my gift; Happy birthday oldest daughter.

Tuesday, July 24, 2012

Welcome 1980! (or Really? Is That What You Think?)

I thought I have heard all of the comments.

It was nothing short of a surprise when I heard this new one.

Tell me, does this...

Look like this?

And why would anyone think that my two girls would be wearing one?

After explaining in a direct, calm and clear voice that these were indeed insulin pumps, the second comment was this:

How does one answer that question in front of their children?

With a smile and not a single word more. 

As the girls and I walked away, I gave them each a hug and whispered, "That lady was crazy!  I hope she has the good kind of crazy!"

To which my youngest daughter innocently said, "I think she meant a cell phone.  She really does have a kind of crazy, but I don't even know what kind!"

Which made the lingering question fade and the three of us belly laugh.

Because really, how do you answer that question in front of your children when you know the answer is there is no good kind?

You just don't. 

Monday, July 23, 2012

Taking Time Off - Making Memories

Have you ever had the experience where suddenly, after glancing at the calendar, you realize that it is already mid-summer?

At the same moment, it also occurs to you that you have almost nothing to show for it?

Yes, those lazy, warm (or 100+ degrees hot) days were wonderful and yes, you did manage to hit a goal of relaxing and slowing life down.

Except you also want something, some sort of tangible memory, to cling to when those cold months inevitably hit.

That's what we did. 

We made some memories.  And in the next few weeks, we hope to make a few more.  Hopefully, I can keep up with Naturally Sweet Sisters, but if there are a few quiet days, then just know that we are out doing what we do best....

Kids first, diabetes second.

PS.... A diabetes behind the scenes moment:  After spending two hours in the Titantic Experience, both girls had a lower blood glucose numbers (79 and 83) and needed to eat right away.  This is where we thanked the architects of the museum for supplying an indoor cafe right at the exit of the exhibit.  No searching or waiting to find food.  Sure we could have given the girls those dreaded 'tabs' but eating a hot dog in the Oscar Meyer Weiner Mobile Cafe was a whole lot more fun!

Tuesday, July 17, 2012

It's Summer Time - Not Schedule Time

Our morning routine is completely out of whack. 

For those that might know this, I am a plan and schedule kind of girl.  Surprisingly, type 1 diabetes and I actually co-mingle very well. 

While I take the middle-of-the-night blood glucose check, my husband regularly takes the early morning shift.  During the school year, our oldest daughter only sleeps an hour past "daddy's testing" and is quickly up, eating and out the door.  This plan and schedule helps to keep blood sugars right on track.  Rarely do we have an issue.

So where is that plan and schedule during the summer?

Well, it is surely not happening right now.  Both girls are sleeping in (heck, they are asleep as I am typing this) and quite possibly could sleep until 10:00 a.m. or even later.

Who knows?  I have completely lost control of my morning schedule.  I can't even predict it. 

This morning sleeping is very different from the toddlers and little girls that used to literally bounce out of bed at 6:00 a.m. in hopes of immediately finding a Wiggles television show.

(Sidenote:  I STILL sing Fruit Salad, Yummy Yummy! when I make fruit salad.  Google it people.  Highly addictive!)

That is not happening now. 

In fact, my oldest daughter has been sneaking a sip or two of my coffee and asking for Starbucks. 

Let me be clear. 

That is not happening now either.  Sorry oldest daughter.

The sleeping in phenomenon is not a big deal to the rest of the world.  I am sure if someone that does not live with type 1 diabetes will simply scratch their head at reading my words and declare me nutty.

And maybe they will be a little right.

Because the simplest things like sleeping in DO make me nutty and not because of a lack of plan and schedule.

Surprisingly, it boils down to keeping them safe while we mess with that plan and schedule.

Once those girls wake up, they will need breakfast and that will happen around 10:30 or even (gasp!) 11:00 a.m..  In our pre-summer vacation pump settings, 10:30 a.m. was a lower insulin to carb ratio and a lower basal rate.

For example purposes to illustrate what I am up against,

6:00 a.m. to 10:00 a.m. is 1 unit of insulin for every 6 carbs.

10:00 a.m. to 12:00 p.m. is 1 unit of insulin for every 10 carbs.

Without changing that I:C ratio, my girls will be trending up and not able to compensate for the carbohydrate riddled breakfast foods like cereal, waffles, fruit or toast.

Don't let me even get started on Basal Rates.  My normally active kids are sleeping in longer which directly effects the amount of  basal insulin --- except that this is the time of day noted as the 'Sunrise Effect' which tends to elevate blood sugars by causing insulin resistance.

The only way to figure out basal rates for this time of day is to wear a CGM and test BGs like crazy to figure out typical trends.  Even by doing so, there is a second phenomenon called 'Mom Worry' which keeps me looking at the clock to see how long my children have fasted overnight -- ultimately, without food, they are going to go low. 

Truthfully, that worry is hard to keep in check.  It is so much easier when they are up and awake so they are aware of hypoglycemia symptoms.

The later breakfast eating causes more problems.  If I stretch out the lunch time to 12:00 or 12:30 p.m. or even 1:00 p.m., no one is very hungry and worse, pump settings need to be revisited a second time.

The domino effect happens for afternoon snack and dinner... which I can tell you is happening around 7:00 p.m. (not the 4:30 after school/before sports practice time).

And who wants to sleep after eating a meal?  So bedtimes are stretched and of course, because we are experiencing extreme physical growth due that lovely thing called puberty, the girls need a bed time snack.

Which last night, ended up being around 10:00 p.m.? 

What?  Is that right?  What happened to my schedule?

So what is a mom to do?  Enforce strict timings on her children or try to just go with the flow?

I choose the later and will adjust the heck out of the I:C and basal rates and maybe even tweak the early a.m. BG goals to account for the extra zzzzzzzzs.

This is summer after all.  That magical time in our lives when kids are home, creating memories with their family and enjoying all of the wonders of childhood. 

Blissfully, my girls understand none of this.  They are just happy (and well rested!) children.

To me, that is completely worth it.  

Saturday, July 14, 2012

The Learning Curve ( Always More with Diabetes)

I do not profess to know everything there is to know about type 1 diabetes.

First, I do not actually have type 1 diabetes and secondly, my kids are still growing and hitting new stages of living with type 1 diabetes.

What we dealt with at age 3 is very different than what we will be dealing with at age 13 or 33 or 83. 

Our life with type 1 diabetes changes hourly sometimes.  Nothing like a new infusion site at 10:00 p.m., only to realize that it failed at 3:00 a.m., to remind you that type 1 diabetes is fickle at best.

I am also careful in not getting caught in that trap of perfection with managing type 1 diabetes.  This is a journey and we live a real life that centers around raising two little girls and incorporating type 1 diabetes into our life (not the other way around).  Kids first, diabetes second.

We try our best but it will always be an art, not a science.

This mentality helps me when it comes to things like the A1c appointment (or that dreaded Parent Report Card).

At our appointment yesterday, as I listened to advice that our Endocrinologist provided regarding options for better type 1 diabetes care, I had to resist the urge to defend myself.  The conversation went a little bit like this:

"Are you pre-bolusing before meals?"

We (our family) nod in unison and explain that the girls bolus and then eat.

"But you don't wait 15 minutes?  That might help."

I wasn't even sure why I felt defensive in the first place.  It wasn't as though we were doing anything wrong.  I actually had to remind myself that we are at the A1c appointments for suggestions just like this.  Helpful suggestions like waiting a little bit longer before eating.  Why did a simple suggestion bother me so much?

There is nothing wrong with getting opinions and I know it would be foolish to suddenly start rejecting new ideas just because I felt defensive. 

Instead, I got my thoughts in order and realized what I really needed was an idea on how to make pre-bolusing 15 or even 10 minutes ahead happen. 

I asked our Endocrinologist, "How do you tell two very hungry children that before they can eat, they must sit at the table and wait for 15 minutes?  This is a real life family after all.  When they are hungry, they are hungry and it is difficult to say wait."

In turn, she nodded her head and agreed with us. 

This question sparked up a very helpful brainstorming session between all of us; our Endo, the girls and myself.  It also helped to remind our doctor that sometimes things aren't as simple as they seem.  Yes, waiting for 15 minutes is a great idea, fantastic even.  Truthfully though, it is difficult.  When someone is hungry without diabetes, they just dive right in.  No waiting is necessary. 

We ended the conversation by solving it with mom (me) making an announcement in the morning.  We decided that when I wake them, to put in their breakfast carbs while they are still upstairs in their beds.  Forgetting lunch altogether and dealing with it best as we can.  At dinner, mom making another announcement for what dinner will be and asking the girls to pre-bolus before even stepping foot in the kitchen.

It's not perfect, but it works.  Most importantly it is a helpful suggestion and one that I know will improve our girls care at this age of type 1 diabetes life.

Thank you Ms. Endo!  We'll let you know how it goes.... to be continued!

Wednesday, July 11, 2012

National Slurpee Day - A Kids First, Diabetes Second Freebie

Today, is National Slurpee Day (I may have just made that up but who cares - my kids would love this to happen every day!) in honor of 7-Eleven's birthday.  As a mom of two kids living with type 1 diabetes, I have professed my love of sugar free slurpees before.

No carbs to count.
No dosing insulin.
No stopping-what-you-are-doing-to-test-your-blood-sugar.

Just kids first, diabetes second, great taste, beats the heat and a whole lot of fun!

Here is my original post.  Oh, and for today only, your slurpee in the mini 7-11 size is FREE!  Enjoy!

Tuesday, July 10, 2012

Living History (Or Anything is Possible)

A few months ago, one of my daughters had a field trip to the Natural History Museum.  While I enjoy the look back at our world, part of me is often deeply saddened at the thought that pre-1921, there was no such thing as insulin. 

Sigh.  I won't go there to explain all of the reasons because I am pretty sure you can guess.  I especially like to hurry through the early 1800s because of the visual impact in the realization that there was no insulin.  Seeing the old black and white family photos and 3D stereographs of children splashed around the museum 2nd floor still bother me.

The emotions run a full range of deep sadness, terror and an immense relief.  What would we have done?  Thank goodness my children were born in a modern era. 

I breathe a sigh of relief when I recognize the part of Natural History Museum that looks like it is mid-century modern.  By the 1930's, medicine had improved tremendously.

We would have been OK.  Not great, but certainly, OK.

Despite the limitations of early insulin, sharpening syringes and boiling needles, people survived.  Not just for a few years either and not just in the most sterile of conditions.  In fact, there are a few men and women floating around cyber space that are truly legends in their own rights.  Bob Krause just received an award for living 85 years with type 1 diabetes.  He is 90- years old and going strong.  I already love him.

Even post 1921, there are a few moments in history, like WWII, where one can assume that insulin had to be extremely difficult to receive, even for a family living in the United States.  In Europe, where a loaf of bread was hard to come by, finding insulin sources would seem impossible.  The feeling of terror comes right back to me.

What would we have done? My only two babies... 

This is where I buckle down and demand to know positive examples of living with type 1 diabetes in those early years.  I can't be bogged down by the 'what-ifs' if I am going to be an example for my own two girls.  One day, they are going to connect the dots and want to know if they could have survived being born in those early years.  I want to tell them a very definitive YES.

One story that I came across is an account of the life of Ernest Sterzer.  What makes this story extra special is that he quite possibly, is the only patient diagnosed with type 1 diabetes to survive the Holocaust.  While his story is truly horrific, he calmly tells a tale of living with type 1 diabetes and overcoming the world's greatest challenge of being a Jewish boy in the middle of Vienna.  At the end of his story, he explains that be sent to the concentration camps saved his life, with absolutely no malice.

Simply put:  he is a hero and a great reminder that anything is possible.

I plan on keeping this story with me for as long as I can.  When those days of feeling like a failure for not achieving perfect artificial pancreas status hit, I will try to remember that this is a journey and that we are so lucky to be living in this very, very modern day and age.

We are OK.  Very OK.

Below is a link of his story, in his own words.  The story is also available at the Holocaust Museum in Washington, D.C.. 


Special thanks to dlife.com for airing this information and providing an opportunity to share the courage of Mr. Sterzer, an inspiration to all who live with type 1 diabetes.

Monday, July 9, 2012

Understanding Pokes and Tabbbbbbbbbbs

Kids At Play - Children Crossing Sign

My kids have been swimming and bouncing in the trampoline daily.  Then add in the golf, bike riding and did I forget to mention that my kids have been running with my husband? 

It makes me exhausted to keep up with it all, so I can't figure out why they aren't asleep at six o'clock p.m..  every.single.night.

Kid energy could fuel the world.  There!  I think we just solved the fuel crisis!

Some of that comes at a price.  Yesterday's cannulas from their infusion sets both had a trace of blood of in them. 

Numbers were pretty good.  Better than one would think when their is blood clogging the line.

They just weren't good enough for a mom to not worry all night long.

At 10:00 p.m., I posed the question, "You have a little bit of blood in the cannula.  Should we change your site now or when you wake up?"

The first reaction from both of the girls was to say, "Tomorrow!"

I stayed quiet and spent a moment thinking it through.  One of my most successful ways of getting things done with the girls is not to react the moment they speak.  I have to let them process the information first. 

A moment later, my youngest daughter spoke up and said, "OK, lets just get it over with and do it now.  I don't want blood in my cannula.  I don't want to go high or low.  I don't want to eat tabs."

She slowly gets up to walk towards our site change area (which I will explain in another post) while repeating and muttering the word "taaaabbbbbbbs".

Another new development in our house is that glucose tabs suddenly taste bad. 

The second new development is that the girls mock the word "tabs" to show their disapproval of that kind of glucose.  Apparently, at type 1 diabetes camp, the med staff used the word "tabs" generously.  And from what I can gather, with emphasis.

Then my other daughter chimed in with, "Me too.  I want to change my site now. No tabbbbbbbsssss!" 

Youngest daughter said, "That's good.  Because if you waited until tomorrow, you would have to do it alone and no one wants a poke alone."

What would have been a battle and a bucket of tears over fearing the impromptu infusion set change, has now become something that the girls recognize as a "need to happen - now!"

I might still have to call it quietly to their attention but neither girl wants to go to sleep with the possibility of a low glucose or high glucose and ketones.

And apparently "taaaaabbbbbs"!

Friday, July 6, 2012

Friday Funnies: 7/6

Some t-shirt humor today.  Makes me want to run out and have a few of these printed but instead, I will settle for my morning coffee and a good laugh.  At an average 101 degrees around here, it is still way too hot to do any running!

Smart rules.  Enough said.

My girls are NEVER allowed to use this line!

With the expensive of DADs, this one seems appropriate

Hee hee!  I wish to wear this one somewhere inappropriately.  The airport, maybe?

And who wouldn't want to bring this guy to a party?  He obviously is cool!

And this one is a favorite that we actually saw in real-life in Florida.  Oldest daughter laughed so loudly that other people in the store actually came over to read the shirt too!

Thursday, July 5, 2012

Youngest Daughter - (Growing Like A Weed)

Youngest daughter a year before diagnosis at a friend's birthday party

I have been doing some reflecting lately.

Things have once again been changing over here in the Naturally Sweet Sister household.  Nothing too obvious but more like the subtle changes that only a mother would see.

I  see that change happening to youngest daughter.

It is that magical age of growth, physically and emotionally, that happens to most little girls right around 4th grade.

She is taller, smarter, sillier and with a sharper sense of self than ever before.

In type 1 diabetes world, the changes are even more apparent.

It started with youngest daughter asking me to put the clip on her pump so that she could wear it on the outside of her pants, for the rest of the world to see.

At camp, she volunteered for the infamous leg site that has sparked change in a few other (and older, might I add) kids.

Yesterday, when her site fell off due to heavy play with water balloons and sprinklers, she came to me with not only the information that she needed a new infusion set, but with the supplies to put one on.

But the biggest change came in the form of an innocent question.

"Mama, do you worry about me all the time?"

It was said with the sweetest of voices but with an urgency that made me look quickly at her.

"Of course.  I love you very much."

With a solemn nod, youngest daughter said, "You don't have to worry.  I am going to be OK.  I know what to do now."

Ahhhhh.  Change.  I should feel better because I know that she is not the just turned 3-year old that was diagnosed.  She is a strong, capable young girl that has grown tenfold and is proud of herself AND her type 1 diabetes.  Even so at that moment, my heart broke just a tiny bit... because no one should have to worry about their mother's worry.

That is a cue for me to change... to try to embrace the idea that I am giving my children the tools that will allow them to thrive without the need for constant worry.

I just wish I knew how to do that.

That's the thing about type 1 diabetes, even if you think you know how to handle it, sometimes it sneaks up with a shockingly low or high number that pushes the need for having someone else there to take the reins of care. 

For the moment, I don't bother to explain that.

Instead, I grab youngest daughter for a big squeeze (thanking my lucky stars that she hasn't outgrown that) and say, "I know you can do it.  I am SO proud of you!"

Tuesday, July 3, 2012

Happy Fourth of July

Fourth of July is one of my favorite holidays, mostly because of the wonderful summer weather and also for the fact that the food is easy to manage and count carbohydrates. 

Hot dog?  Buns are a solid 21 grams of carbohydrates and if in doubt, the package is never far as no one wants a stale piece of bread.

Watermelon?  A cup is a neat 10 grams of carbohydrates.

Potato Chips?  Easy-peasy and usually about 15 grams of carbohydrates for 15 chips.

And chip dip?  Well, it is always FREEEEEEEEEEEE! 

With all of that no-nonsense carbohydrate counting going on, the girls and I decided to try our hand at making some "Fire Work Cupcakes".

Notice that little finger heading into the mouth?  Do you count carbohydrates for taste-testing?

Eventually, after taste-testing, the real taste has to happen.

Yum!  And so carb-worthy! 

From the Naturally Sweet Sisters, have a safe, fun and happy Fourth of July!

Ps....  To make Fire Work Cupcakes, follow direction on one box of white cake mix.  Pour batter into baking cups.  Before placing into oven, add one drop of food coloring to the center of batter and using a tooth pick, swirl into a design.  Do not over mix or you will not be able to get a fire-work effect.  Bake as directed on box.  Frost or serve plain.  Carbohydrate count will vary upon the amount and size of cupcakes. 

Sunday, July 1, 2012

Peer Pressure (Or Seeing is Believing that Anything Is Possible)

Sometimes, seeing is believing that anything is possible.

During camp week, youngest daughter braved a "first" and asked to have an infusion set placed into her leg.  Her only wish was that while it happened, oldest daughter be there to hold her hand an offer encouragement.

Which they did.

While holding her sisters hand, oldest daughter watched her sister show great bravery and at that exact moment, decided that she too, wanted to try a leg site.

The only problem was that she wasn't in need of a site change.

Oh, the irony of type 1 diabetes.

Finally yesterday morning, both girls needed infusion set changes and both decided to do legs.

Bravely they sat down, criss-cross, apple-sauce style and waiting impatiently for their pokes (Inset 30s with Animas Ping).

Each sister shouting out words of encouragement.

"Hurry up, Mom! She is ready and she needs you to GO FAST!" 

"You can do it!  Just think happy things" 

"Remember when I spit out my milk?  That was so funny!"

"See, it didn't hurt, did it?"

This is the kind of peer pressure that makes having two sisters living with diabetes a little bit easier.  They have each other to lean on and to encourage and to hold hands when the going gets a little bit rough.

And maybe by showing the world this, we are also showing that anything is possible and offering everyone a little bit of that sister encouragement to try something new in the world of type 1 diabetes.

Seeing IS believing.

Anything is possible. 

Even getting a cat to hold still long enough to have his picture taken too.