Monday, December 29, 2014

A Look Back and A Look Ahead

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Another year is quickly shuttering.  As I peek into the 2015 window full of exhilarating, wonderful and exciting possibilities, I can't help but to reflect on where we are TODAY. 

That is, after all, one of my biggest life lessons since T1d came into our lives; Live in the now.  

This is a biggie.  The kind of lesson that if you are like me, you learn when you are thrust into a life-changing, permanently altered universe.  This is the realization that all too often 'now' is gone before you even get a moment to blink.  

Today, my 'now' is this; the Naturally Sweet Sisters are growing up in leaps and bounds.  Not just in the realization that they are both almost my height and shoe size, but I am reminded by that as my phone and Facebook is suddenly full of pictures of only youngest daughter.  Her sister, a teenager, is often without me and doing all of those glorious things that wonderfully independent teens do.  I am thankful too.  I wished for this when she was first diagnosed.  Even saying a small prayer in hopes that her life would be just as it would have regardless of T1d.  As we continue through each year, I see this wish coming true, over and over.  Even if it is hard on my motherly heart, I am forever grateful for this.

I appreciate my stolen moments while I check oldest daughter's blood sugar as she sleeps, whispering 'I love you' and hearing as she sleep-talks into saying, "I love you too".  I love hearing her as she asks my advice on how to handle a situation or if her outfit is alright.  She makes my heart soar with pride and at the exact same time, has taught me that I still need to grow a bit more in order to learn of how to cope with those teenaged mood swings.  After all, as all of my friends gleefully point out, I have TWO girls headed into deep growing years.  I have to learn to cope.

At this moment, I have been given another gift of spending a little alone time with her younger sister.  We have declared our upcoming year, the "Year of Adventure" and together, youngest daughter loves planning fun day trips with mom, dad and sister (when she is not busy) to museums, shows or even just long walks around our town.  She tells me everything and I savor her words as they are filled with joy and happiness that only eleven years can bring.  Every moment is truly an adventure.

Which brings me to the realization that I have learned to let go a bit more.  Mostly of the mad hold that I had on T1d care.  I loosened the reins and I made decisions to help the girls learn through their own triumphs and failures.  College is now part of our lexicon and I realize that I have a little more than four years before that becomes a reality.  In a way, achieving their independence has become a long-term goal of my parenting.  I know they will need to make critical decisions and understand the ins and outs of daily care from supply ordering to pump settings changes and a million carb-insulin-activity-induced decisions in-between.  

At this exact moment, I know that I am not the person that I was eight years ago.  I have changed.  I have grown more into the person that I needed to be, but also the person that I wanted to be.  Ironically, T1d gave me both heartbreak and strength.  I also recognize with giddy anticipation that there is more yet to be accomplished.  While the girls may need me less that has offered the possibilities of finding personal fulfillment.  I traveled without the family, spoke passionately to others about my personal platform of improving patient/family care and met many other deeply committed shareholders both with and without T1D.  Like peeling layers of an onion, there is so much more than 'mother' in my circle of reference.  I am feeling it for the first time.

And with that, I welcome 2015.  

Tuesday, December 23, 2014

Teaching Daughters and Security Guards

Last night, a dear friend gifted us a four-pack of tickets to see a local basketball game.  Without hesitation, our family accepted with grateful hearts because for the first time in many weeks, we could go without having to hurry back for school projects, work deadlines or any of the other million of things that constantly consume our daily lives.  The gift wasn't just about a basketball game, but more about the opportunity to do something fun while relaxing together.

Once we arrived, oldest daughter and the Naturally Sweet dad, raced ahead with their longer legs to enter in through security and ticket scanning.  They had their tickets and youngest daughter and I had our own set safely tucked into our pockets.

However, once in the security line, things rapidly slowed as three of us carry purses.  Mine was simple enough with a quick scan, but our daughters had to pause to pull out their test kits and open those to show what was inside.  Youngest daughter and I made a few jokes as that extra time allowed us to catch back up with the long-legged crew.

Moving through the line past security and suddenly, another security officer reached over and stopped my husband.  Pointing at his outer coat pocket, he motioned for the Naturally Sweet dad to take out his water bottle and toss it into a big bin marked for prohibited stadium items.  The Naturally Sweet dad, a true follower of all rules, turned to our oldest daughter and motioned for her to do the same.

Catching all of this as I looked ahead, I hurried through the line and started to yell, "NO!  Wait!  That water is for our daughters.  They are allowed to bring that in for their medical condition."

Oldest daughter looked at me and I could tell that she wished for nothing more than for her mother to stop talking and possibly wither away.  (And maybe I should have because we do have the luxury of being able to afford buying another beverage within the stadium.)  However, I just couldn't.  This was suddenly a teaching moment.

Instead, I calmly but forcefully explained section 504 of the ADA to the security guard and then, to the two others that came to make sure that we were not causing too much trouble.

In a matter of minutes, both water bottles were properly returned to our family and we were allowed in without further hesitation.  Oldest daughter seemingly forgot her embarrassment at mom and was back to giggling and joking with the rest of the family.

After we took our seats and were casually watching the warm-up to the game, oldest daughter leaned over to me with a conspiratorial wink and said, "That was pretty cool, mom."

I smiled back and said, "Thank you.  I am glad you are having fun."

"Not that, mom... The security guard.  You really knew your stuff."  She smiled again and suddenly seemed proud that I was able to represent our family.

We then talked a bit about her future and how diabetes tended to make events tricky.  I admitted that I also didn't like to have to stand up for our rights and that I wished (must like anyone else) that we could just sail through without having to say anything.  I also explained that one day, I knew that oldest daughter would be without me and that one bottle of water might be the only access that she would have during her time away from home.  What if her blood sugar was struggling that day, causing dehydration or ketones?  If she let the first 'no' stop her, the situation could quickly escalate to needing emergency services or worse.

While the basketball game will most likely be forgotten in the grand scheme of life, I am sure that the security guard incident (as we know call it), will be remembered for many years to come.

Monday, December 15, 2014

December Diaversary x2

For three years, I didn't understand how much you were absorbing of what was going on after your sister's diagnosis of type 1 diabetes.  I was caught up in making your magical childhood happen just has it has always done, with the exception of an extra poke, dr.visit or pump start.  I wanted to make sure your kindergarten year was every bit of the joy that we had intended it to be.  Thankfully, your lovely teacher never batted an eye as I sent you off during some of the harder moments dressed in the frilliest of tu-tus in hopes of lessening the difficulty that T1D had brought into our home.  I knew you were happy and loved,  those were the biggest gifts that I could give during those early years.

However, you were always there, quietly watching and observing what your little sister was doing.   In hindsight it was no surprise that you instantly recognized what your little body was telling you five years ago.  There were drawings made by you at age 5 of your sister with blood droplets surrounding her and pictures created by your 6 year-old child-hand captioning the very worried phrase 'DIE'-betes.  As you continued to grow through 6, 7 and 8, there were play-acting games with stuffed animals that needed juice or shots right away.   There was even a special collection of your own stickers from the hospital that you treasured, while asking when it would be your turn to go have a visit. Such a premonition that neither of us realized.

Poking your finger on that cold, winters day broke me into a million tiny pieces.  I hadn't thought it would happen to you too.   Realistically, I knew the possibility was always there, but I didn't want to admit it to either of us.

I remember calling and frantically looking for options to stop what was happening.  Anyone with a connection to promising research was called and for the first time, I didn't even care if I sounded crazy.  I would have done anything to change the direction that was headed our way.  Coming to terms with the inevitable answer of 'there is nothing we can do' was perhaps the hardest realization that I have ever faced in my life.

While your sister's diagnosed changed me, yours did too, perhaps even more.  It made me have a steely resolve to continue to work wherever I could to advocate for better treatments, equal health rights and most of all, for a cure.

Even better, is knowing that roles have somewhat reversed for the two of us.  I now sit quietly watching you, listening as you tell me about a kindness that you bestowed on a classmate in need and of how you tried to help a fellow friend with T1d, handle a bothersome situation.  I watch you hug your sister after you give her an injection in a hard-to-reach area and while you comfort her like a mama would with kisses on the top of her forehead.  I see you step out of your comfort zone to lead at school and to encourage others.  I watch you day-dreaming into the future, when you are done with school and have become a pediatric endocrinologist and in your own words, "helping kids the way they need to be helped."

Five years ago, life handed you the very big task of living life with type 1 diabetes.  I am so proud of how you have accepted it, managed it and continued to thrive with it.  You make me proud every day, sweet girl.  I have no doubt that your gift to the world is the ability to show this special strength and to encourage others to follow your grace and kindess.

I can't wait to see even more of what you choose to do in this world and I have a feeling, there are a lot of people cheering you on. xoxo

Thursday, December 11, 2014


This a posted sentiment that I wrote on my facebook but somehow, it felt like the only one that I wanted to write.  Diaversaries are like that... whatever works for whenever you need it.  

This is what I needed to say today.  My heart is full of 8 years of learning through love.  I need to thank her for being the strong person that has led the way for me and all around her.  She has made me a better person.  

"Today, exactly 8 years ago, our just-turned 3 year old, little girl was rushed to the hospital with a blood sugar of over 800 mg/dl and with an A1c of 13.7. After a week long stay at our local children's hospital and endless learning curve; today, she has proven that Type 1 Diabetes and Hashimoto, both autoimmune diseases of no known origin and with out a cure, will NEVER stop her from the love of learning, feeling the freedom of belly laughs and accomplishing anything her heart sets out to do. Such a priviledge to be taught so many wonderful lessons through her determination to succeed, joy at all that life offers and best of all, endless HOPE for a CURE. I am proud of you, youngest daughter. You have taught many and continue to do so. The world is better because of YOU!"

Monday, December 8, 2014

Sit With Me Until I Am Safe

Last night was a doozy.

Blood sugar fighting with some mad jabs throughout the day and landing a final low blow squarely on youngest daughter.

It wasn't the normal, well normal-'ish' because what is normal about a low blood sugar??, kind of low.  This one was fierce and seemed to hang on into infinity and beyond.

This low also had to happen right at bedtime.

After teeth were brushed.

Beds were tucked.

And on a Sunday night.


At the exact same time the final low blow happened, I found myself caught up in night-before-school-resumes mayhem and slightly irritated that T1D was interferring with what needed to be done around the house before Monday morning arrived.  I was more than a little upset at myself for slacking off over the weekend and not working harder to avoid the pile up of school stuff, lunches and laundry.

Once the low blood sugar was discovered thanks to the shrill squeal of her CGM alarm, and after I knew our youngest daughter had treated it with some juice and a few tabs for good measure, I started to mentally tick off the mountainous to-do list that required my immediate attention.  Antsy and impatient, I headed back to the hallway.

However, this night was different.  As I was about to leave her room and ready to explain that "I would be right back but had to do some mommy stuff", a little voice called out.

"Sit with me until I am safe."

For a second time that night, T1D pounded another fist of pain.  This time to me with the realization that I had forgotten how hard and scary it can be to recover from a low blood sugar, especially for a little girl.

My eyes instantly teared up and all other thoughts of to-do lists floated right out of my mind.  I could only think of her innocent words that expressed the only important thing in this world... which packaged as safety, was really more about family love.

So I sat with her; snuggling, cuddling, kissing and holding her tight.  I waited until the in-range CGM resumed and waited even longer, until well after her eyes grew heavy as she once-again relaxed.

I continued to stay for a long while later, watching as she slumbered and promising that I will never forget that powerful reminder.

Wednesday, December 3, 2014

Pokes - Yes, they still hurt

I was gently asked by a good friend 'if the infusion site change hurt?'.

It was not an offensive question, but more of a hopeful one, as I could tell that the answer she wanted was for me to say, "No.".

But that isn't the case.

Infusion site changes, continuous glucose monitor  (CGMS) insertions, finger sticks, needle and syringe injections, are each inserted with a sharp, stainless steel needle through a top layer of soft skin tissue.  Pain levels vary depending on the amount of nerves, scarring, fat and even the degree to which blood sugar is in-range during the procedure.  Higher blood sugars are often prone to a higher degree of pain, which is also a big indicator for the need to change an infusion or CGM site.  Certain areas such as pads of fingertips or muscle filled arms and legs, tend to cause more pain as well.

There is often more pain when a child is already feeling down, sick or frustrated.  All parents will understand the phenomenon of taking kids to the pediatrician and explaining ahead of time that there will be a shot given at the end of the appointment.  Some children anticipate the future pain and work into a frenzy of anxiety, making the procedure even more painful.  I equate that type of hyper-sensitivity to being at the dentist.  No matter how hard I try, I still fixate on the teeniest moments of pain and find myself reacting intensely.  I can stub my toe, have it hurt like heck and manage that moment better than the injections given in the dentist chair.

Pain management is difficult to explain to a child.  When our youngest was three, her entire world turned upside down and suddenly, she was being poked by people she loved at every turn.  From IV lines for her severe dehyrdation to hourly finger sticks and multiple daily insulin injections, needles were coming at her from every direction.  It was not any easier for our oldest daughter at age 8 to suddenly have the same series of injections.  Suddenly she flipped from supporter of her sister to needing support from her sister.  Our oldest may have been better able to communicate her pain and sadness, but it hurt every bit as much as it did for her crying and confused baby sister.

Pain tends to be worse at night, before bed, when a child is already worn out from a long day of managing their disease and asked to have one more poke.  Conversely, first thing in the morning can be just as hard as a child has to take a poke before he/she can eat or before they head to school, with the expectation that they will be able to get over it.

Pain never quite fully subsides, even with a chronic disease that many believe we should be 'used to it'.  Within the medical community, where many are desensitized of needle pokes, our family has listened to techs, nurses and even the odd pediatric endocrinologist make a comment that a flu shot or a blood draw should be 'no big deal'.

Other parents have used my family as a guide for dealing with their own set of pokes and resulting pain.  Without wanting, we have become a poster-family for getting through annual pediatric shots.  This is hard to hear as I carefully explain to other parents that no matter how brave a child may seem, a poke is still a poke and has the right to compassion.

Let me emphasize the fact that pain is real.  Pain is not imagined or exaggerated.  Pain takes many forms from depression to anger caused from managing a chronic, life-threatening condition such as Type 1 Diabetes.

The awareness of that thought is important as it may bring about a greater feeling of compassion or sympathy from people that are not living with chronic conditions, for all children (and adults) that do.

While we have no choice but to live with the pain, it is nice to have some kind people acknowledging the need for a kiss or a hug to make it better.  This should not be confused with pity.  Even a simple smile would provide greater support to a person living with a chronic illness than a poorly spoken 'should be used to it' comment.

The question that started our conversation was helpful.

Today, I now know that one more person is going to offer a little more kindness and compassion to all of the people that live with Type 1 Diabetes.

Feel free to share to your community as well.  Together, we can make a difference.

Tuesday, December 2, 2014

Feel Beautiful Today

Somehow, we managed to hit the teacher jackpot this year.  Both of the girls are surrounded by strong, smart and wonderful adults that are fully committed to shepherding them through a year of love and learning.

It really doesn't get any better than this which is underscored by this example:

               In one of our oldest daughter's classes, a teacher stepped out from behind the proverbially desk (modern times - no desks and only smart boards/laptops) to impart some brilliant wisdom that can only come from having life experience as a long-ago teenager.

As she scanned the room of reticent young faces, instead of keeping her thoughts inward, the teacher decided that she needed to share a critical point.

My daughter, always quietly listening and watching, devoured the words immediately.  Simple as it was, the impact from a beloved teacher was immediate.  I noticed as she re-told the story to me, her stance was taller, straighter and more empowered.

This is the kind of gift that only the best of teachers can provide.  Even if mom said it a thousand times before, the message never had an impact like it did today.

What was it, you ask?  Here you go (and while paraphrased by oldest daughter, this is the basic concept).

"Girls and boys: You may not be feeling very good about the way you look or maybe you are feeling negative about 8th grade.  However, I want you to know that when I look at you, I see only how beautiful you are.  I want you to know that when I look back on the pictures that I had as a teenager, even though I didn't feel that way then, I now see how good I did look.  I think, "Damn!  I was gorgeous!".  Yes, I know I just said a bad word but I want you to know how serious I am.  Each of you are beautiful and lovely and smart and talented.  Enjoy these gifts now.  Don't wait to look back on some old pictures. Believe in yourself today because I do."

Thank you, Ms. H.!

From a mom of a teen aged daughter and her 'almost' teen aged sister