Be A Halloweenie - Part 2

I hope everyone has a fun and happy Halloween tonight. 

Here a few extra helpful pieces of information if you are a first-timer.

From the JDRF website, a link to Halloween Fun Size Candy Carb Counts.

If you are on Multiple Daily Injections (MDI), you can check the JDRF list ahead of time to see if there is any candy that you can safely eat as a "freebie" while trick or treating. 

If you are pumping, consider printing the list - like we will - ahead of time to tuck into the trick or treat bags so that you know what amount of carbs to bolus for. 

For MDI, another great tip is to incorporate the Halloween candy into a meal so that you don't have to give another injection.  Even though we pump insulin, we like to trick or treat around the neighborhood and then come home, count the candy and have a mini meal before bed.  This also helps with dealing with low blood sugars that often come from excercise.  That trick or treat walk usually adds up to a few miles around here - just enough to bring a low around 2:00 a.m..  Eating helps!

Don't forget to pack your blood glucose meter, strips and even alcohol wipes.  If you taste-test along the route, you will probably have sticky fingers... so an alcohol wipe is necessary for the trip.  Most likely, you will have candy, so for the first time ever, you can probably leave the glucose at home!  Just be sure to swipe a piece of candy from your own stash before starting out because like in restaurants, you never know when the food is going to arrive.

Bring a mini flashlight if your meter doesn't have a light.  Many a time we have fumbled with readings and wasted strips because while we thought we had made a poke, all we actually did was to lay a strip on a bare finger.

If you forget your flashlight, try using your cell phone.  The light is often just enough to help make sure the blood is on the strip.  A cell phone is most important too because if you are like me and have good intentions on printing the JDRF candy list and do not, well, then you can use your cell phone to look up fun size candy!

And have fun!  Enjoy Halloween with type 1 diabetes.  Like on Peanuts, Tricks or Treats is the best day of the year as long as you get more than a rock.

Oh, and if you have any leftover Reese's peanut butter cups, be sure to send them my way!

A Little Seed of Good Taste

We did a little pumpkin carving today.

When I say "we", I mean, Daddy.

The rest of "we" watched as the pumpkins were prepped for art; faces and designs directly from the creativity and imaginations of our Naturally Sweet Sisters.

While the pumpkin carving festivities were underway, "we" harvested all of these little guys.

Because nothing tastes better...

Than a few little pumpkin seeds roasted and toasted with olive oil, salt and pepper at 380 degrees for about an hour.

And did you know?  You can eat a 142 of these delicious little nuggets for a mere 3.8 carbs.  If you count dietary fiber at 1.1 grams than you are at a net carb of 2.7!

Yet another reason to be a Halloweenie a little longer!

When Mama Has a Cold - Life Still Goes On

When stress is at overwhelming amount and for too long a time, it is going to happen....

Mama got a cold.

Life still goes on.

The fuzzy is finally fleeing from my brain and I am able to clearly think about cleaning.  Massive cleanings.  The kind of cleaning that needs to happen in order to protect two naturally sweet sisters from getting a cold.

Because you see, I am lucky.  A cold is just a cold and life does still go on.

But for two little girls with type 1 diabetes, a cold can cause blood sugars to swing drastically high and then dangerously low.  With prolonged fasting (ever feel like you are just not hungry when you have a cold?), blood sugars can plummet.  If you are lucky enough to have your basal insulin rates correct, than even with fasting, you can still have ketones.  Ketones occur when your body starts burning fat for energy and if left untreated, can lead to diabetic ketoacidosis (DKA) or in other words; a diabetic coma. 

The absolute scariest moment for a parent of a child with type 1 diabetes is the potential scenario of feeding a child, dosing insulin and then watching with horror a few moments later as the child vomits. 

You can't undo a dose of insulin.

In many cases, the latter situation will land you in an ambulance headed straight for the ER and an IV glucose drip.

In the best case scenario, you will inject your child with a thick syringe filled with glucagon, crossing your fingers that your child does not vomit from the injection.

Like a Halloween horror film, isn't it?

If you do not have type 1 diabetes, you are probably not aware of this. 

Having a cold has consequences.  Spreading that little bug around by sending a sick child to school or heading to the grocery store or hanging out at the local Starbucks with a stuffed up nose and sneezes provides the possibility that anyone with a compromised immune system is going to pick up the same germs. 

While it may not be a big deal in everyone's life, it is a huge problem for a special group of kids and adults with type 1 diabetes.

As much as I wanted to snuggle my own two little girls, instead I washed my hands with soap and sent them lots of air kisses.

Keeping my girls healthy keeps life moving right along.

And that makes Mama feel much better!

I Get By With A Little Help From My Friends

The Beatles - Was Yoko the Diabetes Monster?

Living with Type 1 Diabetes can be both physically and emotionally exhausting.  While there is little to be done about the physical ups and downs (aside from counting carbs and matching insulin), the emotional side is a constant tight rope act.  Sway too much to one side and you are going to fall down, down, into a deep abyss.

This is where having friends is invaluable.  All kinds of friends.  Friends that have been with you since grade school, friends that happen to be family too, friends from college and careers, friends that you met when you became a mommy, friends that became friends because your children are friends too and most recently, friends that you met because they understand the world of type 1 diabetes. 

This is an ode to all of those friendships.

After surviving a month of surgery, recovery, birthdays and vacation mishaps, my friends swooped in to pick up not just me, but my family too. 

The kindness has been overwhelming and so genuinely loving that I know it has helped to mend our hearts.

Yesterday, one my girlfriends called me and we did nothing more than have our usual conversation filled with laughter, stories and honest insight.  After the phone call, I noticed something.  I felt lighter.  Less weight around my shoulders and my neck.  I felt a smile on my face and even had a moment where I laughed in remembering something that was said.  The feeling was so freeing that I went about my day with little worry or stress.

The feeling lasted through a occluded tubing which normally at 4:00 a.m. would cause all sorts of anxiety and panic.  Instead, I focused on the fact that my friends would get a kick out of yet another diabetes mishap - because yes, this is our real life.  Occlusions happen. 

Friendship is a gift and I would be remiss without acknowledging their healing powers.

Anyone who knows me, also knows that I am a huge Beatles fan.  And as I woke up this morning, lyrics were running through my mind in anticipation of this post (which really is one big thank-you to you all.)

What would you think if I sang out of tune
Would you stand up and walk out on me
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key

Oh, I get by with a little help from my friends
Mm, gonna try with a little help from my friends 

Thank you.

Happy Birthday Diabetes Monster





We celebrated our youngest daughter's birthday this week.

She is 8 years old. 

For anyone who has the luck to be entranced by a happy, shiny and sweet eight year-old, it is pure pleasure.  She relished every moment of the festivities and truly savored the flavor of the day.  From dawn til dusk, she enjoyed having a special day all to herself.

For me as her mother, this marks another date as well.

The day my daughter was born.  It was an easy, short labor and we often tease that she came out quickly into the world with a smile that said, "Let's play!" to her 2 year-old sister.  Having our daughter completed the family and she made our world so much brighter with her giggles and happy thoughts.

Then another memory...
Our youngest daughter was diagnosed shortly after her 3rd birthday.   Celebrating her birthday makes an image immediately appear.  One of a very tiny three year-old who refused to leave the party table until she ate pizza.  Sitting so anxiously and asking for food repeatedly while her friends enjoyed all of the party games.  None of this erratic behavior made sense until a few weeks later when an official diagnosis was made.

Some years, this second birthday memory slips by with only a gentle pause at thinking of how far we have come.  On other years, type 1 diabetes rears it's ugly head and makes itself known.  After all, type 1 diabetes doesn't go away just because you are celebrating a special day.

This year, diabetes raged loudly.

A cannula tugged loose while the adhesive remained in tact and a dosage of insulin was lost, resulting in a HIGH on the blood glucose meter.  A new site change, six units of insulin bolused and a fast descent leading to a 39 blood glucose just a few hours later. 

She felt neither of these numbers.  Nor does she remember them.  But I do.

The panic, the anxiety, the stress of trying to control swinging blood sugars in an environment 240 miles away from our home, all while trying to give her the most special birthday an 8 year-old could hope for.

So while I marvel at how quickly my baby is growing up, I also sit with a heavy heart thinking of what will happen when she does reach full maturity.  How will she look after herself and who will take care of the diabetes monster that rages within?

And at the relief that for a while longer she is all mine.  To love, cuddle and protect from everything in the world.

Mom magic is strong and as I tucked her into her bed, she simply hugged me tight and thanked me for giving her the 'best birthday in the world.'

Naturally Sweet Sisters - The Journey Begins

If you have ever wondered why this website is called Naturally Sweet Sisters, well then, today is your day.

The noun "Sister", derived from the Latin origin of 'sorra'..... whoa!  No, this is definately not how the website got it's name.

It is simple... this blog is about two little girls that are naturally beautiful, sweet and kind.  These amazing little girls also happen to be sisters

The end.

Oh, you want to know more about the part with type 1 diabetes?  Well, yes, this blog is about that too.  But that is not what defines these little girls.  They are not defined by having diabetes, but by being who they are; extraordinary kids.

Naturally Sweet Sisters is as much for them as it is for me (and the rest of us).  The lessons that we learn from witnessing two extraordinary kids triumph over the ups and downs of living life with an autoimmune disease will help everyone - whether you have a loved one who has been diagnosed with Type 1 Diabetes or not. 

Naturally Sweet Sisters - it is not about the diagnosis, but about the journey in living a life filled with health, happiness and lots of love.

Be A Halloweenie!





The countdown to Halloween is on.

Costume parties, school parades, church trunk or treating, neighborhood trick or treating, boo'ing with your neighbors, classroom parties, bonfires in the backyard and so much more.

All of this is so much fun!  Right?  (insert googly eyes here)

Well, for the kids maybe.  But for the parents suffering from Halloween over-load, I get it.  I feel it too.  The one-day-a-year holiday has now morphed into weeks of festivities.  Everyone wants to be able to provide a young child with a magical memory to last a lifetime.

To me as a parent, it is like living in Halloween 7, except Michael Meyers is now best friends with Martha Stewart and Willy Wonka.  And they live next door.  And hold seats on the PTA.  But I digress...

Sooooo, how do we deal with it?

We dive directly into the fray.  The girl's enjoy the activities from costume selection to savoring all of the junk food.  We count carbs, dose more insulin than we ever thought possible and go to bed early at night, preparing for even more fun the next day.

Yes, with type 1 diabetes.

I've seen quite a bit floating around in blog land about ways to stop your child with type 1 diabetes from participating in enjoying the holidays, especially Halloween. 

As a reminder, "kids first, diabetes second."  This means that you have permission to let your children participate in the fun.  Revel in it, brag about it and fall to sleep dreaming of the goodness of Halloween overload.

The years of childhood are few and precious.  It seems that in a blink, our children are grown and no longer want to participate in family oriented events.  My advice is to enjoy this time.  Try not to fret about candy or donuts or cider.  Count up the funsized candy bars with your kids and make a pile of the gross pieces that have wrappers missing.   Laugh about the house that gave out toothpaste. Take a taste of one treat or even five.  Talk to your kids about their favorites and enjoy watching them savor a bite.  Give a high five to your kids for scoring a full-sized candy bar.  And take turns teasing daddy as his belly swells from the laffy taffy. 

Carbs will be counted, insulin will be given and in a few weeks, the leftover candy can safely be disposed of...

If Michael, Martha or Willy happens to also live in your neighborhood, may I suggest a care package to them?  They will undoubtedly love it!

In the Spotlight (or Under a Microscope)

My oldest daughter has a broken bone in her hand.  This most likely is not headline news to any of my reader-friends.  We are past the surgery, bone graft and new scaphoid insertion and are now working our way through a six-month recovery. 

Yes, this was not a simple bone set and release.  This was a complicated procedure requiring over three hours of initial surgery, with a second surgery scheduled, to be determined.

As a family, that means that we have yet another medical issue to deal with.

I use the term crawling under my rock quite a bit.  Here is why.

When you are labeled "that family", you know the one that has so-called problems such as "two daughters with type 1 diabetes", the last thing you want to be dealing with is more inane conversation from people who do not understand anything more than a runny nose.  You are in a virtual spotlight just by way of living.

With her arm in a splint/sling and with an insulin pump prominently secured to her hip, that spotlight shines even more intensely.  Wherever we go, it almost seems as though we are stepping behind a podium for an impromptu media conference. 

"Miss, Miss!", says a reporter who is cleverly disguised like a parent we know.  "How on earth did you break that?  What do you mean a bone graft?  I have never heard of such a thing!"  

Another suspiciously similar parent-reporter steps up, "Can you tell us what happened?  Does anyone know about this?  So you have diabeat-us and a broken hand?  Aw, nothing goes well for you honey, does it?" 

"Another problem?" says a reporter who looks a lot like our mail lady.

If the door for unsolicited comments was only cracked, it is now wide, wide, wide open. I can only imagine what it is like for my oldest daughter when I am not there, helping to deflect some of the questions.

Being under the spotlight leads us to another crossing in our journey of life... do we tuck our tails and head for the big rock? 
No, because we are stronger than this.  If we are in the spotlight, we owe it to ourselves to shine.  We answer the pivotal question of I don't know how you do it with a shrug and smile.

As 'that family' we are responsible for showing our children (and apparently the rest of the world) that neither a complicated bone break nor type 1 diabetes is going to get us down.  It might make us pause for a bit, but we will recover and move on, stronger than ever. 

I owe this to my daughter, who much like her mother, looks for a place to hide when someone starts in with the questioning.  I need to teach her the survival skills that she will use for the rest of her life.  Sadly, a broken hand and type 1 diabetes will not be her only tribulations in life.  She will undoubtedly face even more challenges.  Life, while beautiful and wondrous, can also be filled with strife and struggle.  Perseverance and defiance (along with a quick wit) will become a few of her many tools in overcoming these obstacles.

After the 99th question today, I took my daughter aside and told her to invent a story (not a lie) but a good, stop-in-your-boots-and-stare-with-your-mouth-hanging-open kind of story.  After a moment of shock, she looked at me and giggled, "You mean to explain how I broke my hand after climbing the Grand Canyon?  Or how the alligator tried to bite me after I climbed out of our bathtub?  Or should I just say that if they think this is bad, then they should really see the other guy?"

Now that's my girl!  Give those reporters something to write about! 

If that doesn't work, the space under my rock is always available.

Money Can't Buy Me Love

Our Type 1 Diabetes School Stuff

School started after Labor Day.   We are eight weeks in.

We started with full sets of everything.

To date I have replaced lithium batteries, test strips and snacks for the school.  Add in two extra site changes from "oopsies" on the playground and one CGM site inserter that would just not let go of my daughter, which resulted in a total re-do disaster and lots of tears. 

The expense of it all is astounding.

Sometimes, I have to force myself to not think about the large amount of luxury items that our family could be enjoying. 

I do that by reminding myself that we have something better and no amount of money could ever buy this.

It is the sticky stuff that bonds families tightly together.  The little pieces that make my kisses such powerful magic that they can fix an ouchie site instantly.  The sideways look that only my family understands and tries not to laugh out loud because their mom is so silly.  The hug that sends a thousand words to each of us without saying a thing.  The ability to wake up all night long just to make sure that everything is ok.  The reason that Walt Disney World is the happiest place on earth because we are there together as a family.

Not everyone has this.

I do think Type 1 Diabetes gave us even more of it.

Love.

I Don't Know How You Do It

A few days ago, another parent of a non-diabetic said this to me, "I don't know how you do it. "

It's not the first time that I have heard this, although each time I am puzzled by this statement.

What I want to explain is that with type 1 diabetes; either you take care of it or you die.

It's a pretty grim reality.

Wouldn't everyone do it?

But that is too stark of a statement for the real world.  So I just smile and shrug my shoulders. 

Later when I am alone, I review the conversation in my mind and decide that my friend meant to say this:

"Taking care of type 1 diabetes is an enormous task.  You are doing a great job and I hope you know that.  If you need a break, please let me know and I would love to step in.  I worry that I don't always know how to help but I want you to know that I am here for you and your two daughters."

This would have been so simple to reiterate and undoubtedly, make a world of difference to a person dealing with a chronic disease.

I don't know why they don't do it.

I Loved You Even Before You Were Born

To my daughters:

I loved you even before you were born.

You are the twinkle in daddy's eyes.

You are the music in my soul.

You are perfection!

I am honored to be your mother and to provide you with the love, support and strength that you need to face and overcome the challenges that you have been given at such young ages.

I will never give up in fighting Type 1 Diabetes. 

I will always love you.

The Parent Report Card



 In the world of type 1 diabetes, there is a unique medieval ritual between doctor and patient that occurs every three months.  The patient must prove their worthiness and due diligence by providing a droplet (or twenty) of blood to the doctor for his/her approval.  The doctor actually grades this blood serum and provides back a number to determine the worthiness of patient.  The lower (but not too low) of the number, the better.  If the graded number creeps too high, than an army of medical workers will descend for remedial training and the patient will need to submit weekly paperwork in an effort to show remorse or bow to their knees and beg the doctor forgiveness.

This my friends, is the modern day hemoglobin A1c (sometimes referred to as the HBA1c) appointment.

Now what happens if the patient is a 3-year old and only knows numbers 1 or 2 due to their recent potty training?

Than this becomes the Parent Report Card.

If you attempt to talk to any endocrinologist about this grading phenomenon, they will most likely say that this is simply not true.  Perhaps they will say that they are in the business of treating the patient as a whole and not just as a statistic.  Perhaps they will say that they understand that illness, stress, puberty, Captain Crunch, growth and everything else that goes into a quarter of a year's worth of life is to be expected.

Blah, blah, blah. 

The endocrinologist has been trained to look at the A1c as the measurement of good diabetic health.  The A1c reflects how well the endocrinologist is doing in educating the patient and reflects upon the success of the clinic as a whole.  If your doctor tries to show empathy, it is because they know what they should say even if they do not believe it.

Unless the endocrinologist has been diagnosed with type 1 diabetes, he/she truly does not understand the difficulty of obtaining perfection in a broken pancreas.

We do. 

Take a moment and savor this and re-read it to every parent, husband, wife, child, teen and adult living with type 1 diabetes:

You are doing a great job!  The A1c is not your grade in determining how good you are.  The A1c is only a snapshot of a moment in time. 

It doesn't comment on how you stayed up until 4:00 a.m., checking blood sugars and changing sheets when your child had a simple stomach flu.  It doesn't show how you won the big game and then, had to eat 200 carbs in snacks for four hours just to stay above 50.  It doesn't give high fives for getting breakfast carbs under control. 

The A1c is just a number.  By the end of the week, the A1c is not even going to be the same number.  It is a constantly evolving target. 

Rather than celebrate or bury your A1cs, instead, cherish the victories within your type 1 diabetes life.  You are on a journey to living life to the fullest.  Your family is healthy, happy and taking type 1 diabetes along for the ride, instead of hiding it under a rock.

Naturally Sweet Sisters gives you an A+!

To Hide Or Not To Hide - That is the Question

Two fashionista little girls.

Two insulin pumps, blood sugar meters, lancets, CGMs, strips, smarties, glucagon and most importantly, a cell phone.

Where does a fashionista put it all?

All my youngest needs to carry is her insulin pump and CGM.  Having two things that combined are the size of one peanut butter sandwich, probably seems simple, except that my youngest daughter is as tiny as a loaf of bread!  When she is wearing both Pumpy and Dexie, her mid-section disappears into a sea of medical equipment.  Fortunately at this age, what you wear under your clothes does not seem to matter.

My oldest daughter is now in an intermediate school for students in 5th and 6th grade.  She is a few inches taller than her sister and has that long and lean look.  Refusing to have a pump bump, she now clips Pumpster to her pants.  She carries Dexter, her Ping meter remote, test strips, lancets and smarties in a purse.  In her backpack, locker, classroom and office, extra supplies and snacks are available should anything be needed.  It's a lot to remember.

How do we manage it all?

Pump t-shirts
Pump pouches
Waist bands
Cell phone holders
Pump clips
Pockets on clothes
Cute purses and make-up bags

Still, it never seems like there is enough ways.  As the fashionista girls get older, we have to become more and more creative to cover their needs. 

How do you manage it all?

Life is Beautiful

Original Artwork by Artist Meg Fitch


 


When you look at this what do you see? 

I see beauty. 

This is life.  Life is beautiful.  Thank you Meg, for showing the world a beautiful type 1 diabetes life.

Pumpy and Pumpster



Kitty: ten years later, not so fluffy but still snuggly



My children have a few special "lovey" items that they adopted during their first year of life. 
For our oldest daughter it was a soft white stuffed kitten and a cozy faux fur pink blanket given to her while she was still in the womb.  Thank you bff!   

Once I realized how attached our daughter was, I soon became concerned the stuffed animal and blanket would be lost.  I called my friend to determine the location and ran out to buy an exact replica.  Neither of us could ever find a back up kitten, but we did manage to purchase a second blanket.

Two years later, our youngest daughter immediately gravitated to the same pink blanket (so long to having a back-up) and adopted a miniature pink pig.

For as much imagination as my daughters have, the kitten was named "Kitty" and both blankets were named "Blankie".  The pig was the given the most imaginative name of all and called "Bo-bo". 

Bo-bo has been extended to all pigs in general and after last years' debacle of educating our children on food sources, bacon is now banned from our household.  Thank goodness that we do not have to worry about that with Kitty.

To underscore how precious these lovies are, they have been everywhere with our daughters... trips to 25 states, annual visits to Disneyworld, plays, movie theaters, grocery stores, dentists, school, football games, even to Washington, D.C. to see the White House. 

The lovies were there for diagnosis too. 

Comforting and providing unconditional love and support to the girls during a transitional time into a new life filled with pokes and new regiments.

A few years later and it was no surprise when the children picked names for their pumps.  Our youngest daughter was diagnosed first and named her pink pump "Pumpy".  A few years later, our oldest daughter chose "Pumpster" for her green pump.  The lingo of names followed suit this past summer with the Dexcom Twins; "Dexie" and "Dexter". 




Pumpster, Dexter, Dexie (hidden in a pump pouch is Pumpy)

 Maybe we don't want to think about it but these are their "lovies" too.

For as much as the soft and cuddly items like their stuffed animals and the blankets are for security or to help them feel better when they are sick or to give them sweet dreams at night....

so are their insulin pumps and CGMs.

Thank goodness for all of their lovies.

Discipline and Diabetes

                                           

Time for me to gush for a moment.  I am the proud mama of two beautiful, smart and loving little girls.  They are just the greatest kids.  Often, I marvel at how wonderful they are.  They are more brave and fearless than I will ever be.  They seem to grasp new ideas easily and they have such a keen sense of humor.  My girls are also compassionate and kind - I have witnessed them giving away things that moments before cherished, just to make someone happy.  They are special, unique and cool kids.

I love both of them dearly.

As great as all of those characteristics are, my kids are just kids. 

This means that they need parenting such as structure, guidance and discipline.

About six months after my youngest daughter was diagnosed, I started looking for pre-schools.  After passing through a few and not feeling like we found a fit (namely a diabetes fit), I found one through our local school district. 

Upon our first tour, we walked into the office to meet the staff.  One of the secretaries noticed our daughter's pink insulin pump and commented that her adult daughter also wore an insulin pump.  The secretary said her daughter was diagnosed as a young pre-teen and now was a parent herself, living a happy and healthy life. 

Nothing says reassurance to a parent about to embark on a scary journey than meeting a person who knows exactly what you are going through. 

I loved this secretary and I loved this school!  We had found our perfect (diabetes) fit!

A few weeks after enrolling our youngest daughter, a new and not so great, pre-school behavior emerged.  Our daughter would have a temper-tantrum and refuse to leave my side without tears or clinging.  Once inside the classroom, she behaved perfectly and enjoyed seeing her teachers and friends.  Having that little outburst was a normal part of maturity and gave her a feeling of control over the situation. 

As a parent, I had no idea of how to handle this. 

The secretary noticed this and one day, gently called me into her office with words of wisdom so great that I couldn't believe it....

She told me to test her blood sugar and then, discipline. 

Insert silence and a lonnnnngggggg pause........................................................................................

If you are laughing right now, I completely understand.  It seems so simple that it is bordering on ridiculous. 
While I had been handling the invasion of type 1 diabetes, I had stopped handling parenting.  I had been overlooking bad behaviors and turning a blind eye to negative outcomes that my little girls were creating. 

I had been feeling so guilty for everything that comes along with type 1 diabetes (needles, lancets, poking, hypoglycemia, hyperglycemia, infusion set changes, etc.), that I actually wasn't doing any guiding or parenting. I was busy trying to make the boo-boos all better.

Obviously this was my wake up call.  I had to come to terms with the fact that type 1 diabetes would be with us for the long haul.  This was as much a part of our family as is curly hair or blue eyes.  Time to accept it, embrace and stop tip-toeing around it. 

I pulled out my meter, read the normal blood sugar and then, I disciplined.  It took a while to get the kinks out but now, my children know what is expected of them (rules are clearly defined) and what the consequences (privileges like TV or computer are removed and time-outs are given) are.  I'd like to think that my kids are even better because of this, even if really, they are just great kids.

Over the years, many a doctor, nurse, teacher has thanked me for sticking with the hard part of parenting.  So often, I have been told, children with chronic illness are not disciplined.  I am not one to judge because I can see how that happens.  This is a difficult journey that we are on and what works for one may not work for another. 

If I can help anyone out there struggling with this, just remember to test and then discipline.  One day, all of our kids will thank us for it!

Good Morning Sunshine! High Carbs = High Stress

             

It is early morning and I am gently waking my children for school.  Neither wants to come out of their warm blanket cocoons or acknowledge the beautiful sunshine that proves morning has arrived. They snuggle even deeper into the blankets until only the tops of their heads remain out in the open.

I gently kiss their foreheads and pause, marveling at how much they seemingly grew overnight.

Then, clicking a lancet and gently turning on the blood sugar meter, I ask what they want for breakfast.  The meter reads out two beautiful fasting numbers and I feel calm, knowing that my children are going to start off the day without the mental and physical cloudiness that comes with a high or a low.

"Pancakes?" My youngest daughter grins at me.  She knows that mom isn't going to make pancakes.  Too hard to digest those fluffy little cakes during a school week.

She tries a second time.  "Donuts?"  A little giggle follows.

Because even though our family mantra is kids first, diabetes second, I still have to be practical and having a blood sugar of 400+ isn't good for our children or for the school.  We will save donuts and pancakes for the weekend when I can check frequently and extend their bolus to cover the slow release of carbs.

With being practical, I am also being a parent.  Are donuts and pancakes really good for anyone heading off to school? 

My oldest is easier.  "Eggs and sausage!", she shouts as she is moving around trying to select the perfect middle school outfit.  I remote bolus each of them with our beloved Ping (Pumpy and Pumpster respectively) for 30 carbs to cover a small glass of skim milk and one piece of toast.  The eggs and sausage are happily carb-free.  One bonus is that they are also loaded with protein which helps to keep the carbs within the milk and toast from digesting too quickly.
                                           

There should not be blood sugar spikes at 10:00 a.m., although with type 1 diabetes, anything is possible.

It takes only a few minutes and their food is ready.  The girls race to the table and sit down.  In a blink, they are done and running around grabbing last minute things for school... water bottles, lunchboxes, homework, snacks, jackets and gym clothes. 

After the rush of getting everyone out the door I can't help but think, what is going to happen to their cholesterol?
Sigh.  There is no winning in this situation.

High carbs = high stress.
Low carbs = high stress.

Good-Morning Sunshine!

Recovery - Putting The Pieces Back Together


                        

When I started to write this post, I was going to refer to the process that my oldest daughter is going through post surgery.


As soon as I wrote the title, I knew that recovery has a deeper meaning for our family: 

                         Recovery is that moment after your world changes.

                         La récupération est ce moment après votre monde changements. 


Beautiful, isn't it?

It seems that we have been in recovery much longer than the weekend. 

Maybe that is worth noting.  As I watch our oldest daughter heal, I am awed by her strength, perseverance and above all by her inner beauty.  She hurts but she is smiling and laughing.   She struggles to move around the house but refuses my help and simply says with an inward calmness, "I can do this mom.  It is OK."  She takes time to admire her get-well cards and to spend a few minutes on the phone talking to far away family, reassuring them that all is well.  While her recovery will be long, she is determined to not let it get her down.

Recovery, no matter how often or how long, is a chance to pick up the pieces and build a new, better and more beautiful life mosaic. 

Let's Do The Hokie Pokie

Let's see... Monday, Tuesday, Wednesday, Site change day!

It is the third day in and the girls' sites are starting to peel up and the cannula is looking a bit pink.  This is not alarming, but normal.  Insulin sites last anywhere from 2-3 days, (although I have met people who can get through a fourth day without issue).  We are not that lucky.

Today is our hokie-pokie day.

It starts out with a gentle reminder as I wake up the girls to get ready for school.  New sites today.  Both roll their eyes and groan.  Can it wait until after breakfast?  One daughter is almost out of insulin and wouldn't have enough to dose for the "carbohydated" whole wheat toast.  So the answer is no.  We are a family of one for all and all for one. 

I pull out the supplies.

• Alcohol swab x 2
• Uni solve x 2
• IV prep x 2
• Insulin vial
• Pink Inset 30 Infusion Sets x 2
• Pink tubing x 2
• Cartridge x 2
• IV 3000 x 2
• scissors
• paper towel
• Vaseline

The first task is to take off the old sites from the girl's bodies.  I can't do this task for them because I often cause more pain than if they do it themselves.  They use the uni solve to moisten the adhesive and slowly peel off the IV3000 tape.  It comes off like the sticky glue on a mailer and snaps into a worm-like shape once it is off.   The uni solve is used again to remove the second layer of sticky from the cannula site tape.  In a blink and with a little wincing, the cannula is pulled out of the skin and the entire site is off.  One more uni solve swab to  remove any extra sticky from the skin and then, we add a thick coat of Vaseline to start the healing process.

While the girls are busy with their sites, I am quickly working.  Paper towel put down to form a clean and sterile surface on the table.  I rewind their pumps so that I can remove the old cartridge and tubing.  Once it is out, I use my alcohol swab to wipe down the pumps.  Even the cap gets a little swish.  I carefully look over the insulin pump for any little cracks and check the battery life to see if it is time to replace the very expensive lithium batteries. 

I open the tubing and cartridge, watching the pile of garbage next to me grow.  The packaging waste is enormous and I feel a little guilt from knowing that we are throwing this into a landfill somewhere.  Nothing can be recycled into traditional methods, so I try not to dwell on it. 

Once the cartridge is open and primed, I slowly draw up the next few days' worth of insulin, watching for and removing any air bubbles during the process.  My fingers are not strong enough to tap them bubbles out, so I gently use my scissors to knock the bubbles to the top of the cartridge so that I can push them out with the plunger.  One, two, three, the only thing left in the cartridge is insulin.  I thread the cap through the tubing and twist the two pieces back to together to load into the pump.

After priming the tubing, I open the insets and prepare them to be injected into the girls.  They are waiting impatiently for me to be done and sit quietly, holding hands.  We agree that today's site will be the arms (we use flank, stomach, bottom or arm in a rotation).  The girls grip each other harder and hold their breathe, even though I remind them to breathe. 

                                                       


A quick swish of the IVprep pad on the site and then we wait for a moment for the skin to dry.  No blowing is allowed, even though the girls want this to be over with quickly.  We instead wait for the skin to stop shining.

Click!  It is done.  Then, I quickly move to the second child.  Click!  This child does not like being poked and starts to cry.  The other hugs her tight and says, "It wasn't so bad." 

And my eyes burn a little watching them. 

I keep going because there is more to be done.  Picking the scissors up once again, I cut a little hole into the IV3000 and stick it to the top of the site.  This is our little extra insurance that the site will not be yanked out during the school day, although, it does happen from time to time.  Then, I click the tubing to the site and prime the cannula. 

The garbage and the inset needles must be carefully put away. But first, I must poke them again to check their blood sugars and then, pre-bolus them with their breakfast insulin.  Only then, can we be done with Type 1 Diabetes for a few hours.

I give each of the girls hugs and kisses and tell them to finish getting ready for school. 

Sometimes when I pause for a moment it hits me, how many people have to do this hokie-pokie dance before sending their children to school in the morning? 

My eyes burn a little bit more... but then it is time to serve breakfast, help fill backpacks, make lunches and retrieve lost library books and gym shoes.

Trust - How to get your Mojo back after diagnosis

If you have read our youngest daughter's diagnosis story, you may wonder if I was ever able to trust a doctor again.

Yes.

With a whole lot of research, questions, listening and reviewing.

Google is one of the best and worst tools for parents dealing with medical issues.  We've all done it... the middle of the night search using keywords like coughing, dehydration, sinus and the results that return back Malaria.   Quick call the pediatrician, the emergency room, the best friend who knows everything and Fox news!!!!!!!!

(insert rational thinking)

No, this is not Malaria.  We haven't left the state of Michigan, let alone the continental United States.  Pretty sure that search wasn't correct.

But google searches can be helpful.  It is after all, the way that I actually diagnosed our youngest daughter not once, but twice.  The first with type 1 diabetes.  The second time with an autoimmune hypothyroid disease called Hashimotos.

When searching for answers, if I am in doubt, I ask questions.  That old adage is that there is no stupid question, is actually correct.  Sometimes, I glean my best information when I just say, "I am sorry.  I know you do this everyday, but I really am new at this information.  Can you please explain it again?"  It allows the person you are dealing with to remember that you are a parent who really is trying to make good choices on behalf of their child.  99% of the time it works. 

With that remaining 1%, the other old adage is that you can't win them all. 

That being said, your hospital advocate becomes a great resource.  Maybe it is a social worker, a nurse, a friend in the biz, etc..  Speak up and ask for help.  Don't be shy. 

After asking those questions, it is important to listen.  Really listen.  The kind of active listening that means you take notes and write down what is being said.

With each 2-3 hour endocrinology appointment, I walk in prepared with a list of questions.  I give one copy to the nurse with our check-in paperwork and one copy stays with me.    In between each of the written questions, I leave a one-inch gap to use to record responses. 

Sometimes when I am listening, I have more questions to ask.  I try to be respectful and listen to the entire story, then ask my follow-ups.  Even if inwardly I am rolling my eyes because I know the response is incorrect, I still listen and then try to re-ask in another manner.

Don't give up.  When you are all done, review your answers to formulate a clear plan of action.  If you agree with it, give it a try.  If not, start all over with asking questions.

It seems simple, right?

The truth of the matter is that I didn't ask questions before our first diagnosis.  I made the appointments.  I followed the nurse like a good little Sheeple into the room and I let the doctor talk at me.  Then I gathered up my children, thanked the good doctor profusely and took my girls to the toy store to pick out a prize for being so well behaved, while I sorted through the overwelming (and often incorrect) information.

That made me guilty too.  Not for spoiling my girls, because I still have a soft spot for making our time in the doctors office fun, but for being passive.  I overlooked the subtle cues.  Our old pediatrician was nearing retirement and displayed every possible trait that proved that he no longer had the drive to help people.  Going into the office was just simply a rite of passage for his day.  Oozing off of his doctor jacket was the feeling that he had seen it all before and that he ultimately knew what was best - without listening to to his patients.  It intimidated me and sadly, I simply accepted it.

Maybe some of you are thinking that I must be a real treat in the office.  I am sure some doctors perceive me this way.  However, those aren't the doctors that I want on our team, caring for our children.  I would not trust them.

Trust is really what this is all about.  I know that mistakes will be made and some decisions will pan out and others won't.  It happens on every team.  What I do want is a common goal which is simple, to do what is best for our two daughters. 

It has taken a few years and some team members have been replaced since we originally started this journey.  If you read our oldest daughter's diagnosis, you might have caught on that we did indeed have a great team surrounding us.  By having caring, intelligent people that strive to do what was best for our older daughter, we were able to gently transition her into the world of type 1 diabetes.

Getting back to trust ultimately helped to get my Mojo back.  Oh, and the occasional search on Google.

My Dad's Beef Jerky

                                                
                                            


Once upon a time, in a world not so full of carb-counting, lived a little girl that loved to tag along with her father to the bait store.  This little weekend adventure to the tiny white bait shack promised views of interesting sights of open bait coolers, sounds of men gathered around telling fish stories and unique bait store smells - live bait has a very distinct odor if you have never been around it. 

Under the register counter was a selection of old-fashioned candies like sour lemons, licorice whips, Boston Baked Beans, root beer barrels and chocolate malt balls.  Each box was just $.10 and sometimes I would be allowed to select one.  We would share it together on the ride home and once it was gone, my dad would teach me a trick that his father had taught him which was to take the candy box and fashion it into a musical instrument.  I thought that was the neatest toy.

Some days, my father and I would select a different kind of treat.  It was a long, thin package of a spicy cured meat.  To me, it was exotic because it wasn't something that my school-yard friends ate or even knew about.  In my mind, it was typically reserved for old guys that liked to fish and the occasional 6-year old little girl that was really cool.  When we bought one, my dad and I would share it.  The spice was incredible on my young palate and often would make my eyes burn water from the intense flavor.  If my dad noticed that, I would try to be brave and pretend that it wasn't a big deal.  I wanted to prove to him that I was special.  He would acknowledge me with a big smile. 

This was my dad's beef jerky.

Years and years later, after I became a mom and my girls were thrust into the world of carbohydrate counting, we searched for treats and snacks that were consider free.  No carbs to count and no insulin to dose.  This is when I re-discovered beef jerky.

My daughters and I were in the checkout line at our grocery store.  Near the register, were several variations of beef, pork and even cheese mixtures of jerky.  I remembered that meat had zero carbs so I quickly picked up a few to try. 

At home that afternoon, my three year old, who had been literally starving before her recent diagnosis, was eager to sample the new treats.  My five year old was always ready for a culinary challenge was trying to waste no time in opening the package.


                                                             

One bite in and they were beaming!  Delicious!  Every bite was savoured and even when I noticed their watery eyes from the intensity of the flavor, I also noticed that they held back the tears with big smiles.  My girls were my dad's grand-daughters and had he been alive, he would have beamed them smiles of pride too.  So I stepped in and told them the story of the grandfather that they never met and about the little girl who loved beef jerky.