Tuesday, June 21, 2016

She Has It Too

Summer golf!

The girls have moved into the summer season of competitive golf.  This means that we have been traveling to various tournament locations around our state and watching as they complete a round of golf; typically lasting upwards of 5-6 hours.  

It's been exciting, challenging and inspiring.  Last week, both girls won their age brackets and collected first place trophies. Nothing short of awesome as this win was scored through 90+ degree temperatures as they walked and pushed their own clubs around 18-holes. While they were completely exhausted after the match, the very first words spoken came out as, "When do I get to play again?"

They love this sport.

However, golf has also been interesting.  There have been many blood sugar checks during their long rounds. Conquering this need to remain vigilant over T1D is sometimes a struggle.  No one wants to stop what they are doing, especially at intense times during the match.  As a result, both girls have had "I learned my lesson' rounds wherein T1D was not a priority and lows (or highs) surfaced too many times to count.  On those rounds, the scores were not their best and both girls knew that T1D interfered, even though it could have been entirely prevented.   

Through our learning, we also teach others.

Initially, we declared to the course judge that both girls had been dx with T1D.  Mostly, this is a discreet process as the only real reason to declare the information is to ensure that the medical equipment used does not become mistaken for GPS or distance measuring software.  While we are all entirely too familiar with the assortment of blood sugar meters, CGMs and insulin pumps, many are not.  If there was an issue, having T1D on file can instantly solve any concerns.  

As sisters, the girls have formed a unique bond in having a love for the same sport.  Yesterday, both girls had the luck of the draw to be placed into the same foursome for competition.  In golf, this is a rare treat for parents too.  Most often, they tee off hours apart and as such, a 5 hour competition can run closer to 8 hours by the time both girls are done with the course.

Before the match started, I noticed my oldest daughter casually checking her CGM, frowning and then with her typical, ninja-like skills, re-checking using her blood sugar meter.  A nervous dad waiting for his daughter to tee off, stood near me and stared as well.  I smiled, catching his eye and quietly explained that my daughter had type 1 diabetes.  His blank look gave no indication of understanding, so I further added, "Juvenile Diabetes" and then received a head nod.  I didn't clarify further as my statement was mostly spoken to help identify the equipment that she used.  

Not more than two holes later, as parents gathered a little further down the course due to the rule of spectators, our youngest paused to check her blood sugar.  There was interfering with the game or her fellow competitors, but it was noticeable in the sense that she walked back to her bag, pulling out her meter, poking a finger and reviewing the results.  The dad glanced back over at me with a puzzled expression and I nodded, with a friendly smile and sharing the answer to his unspoken question, "Yes, she has it too."

The IT factor.

Saying 'she has 'it' too' is not a new phrase for our family.  However at that exact moment of watching both of my girls as they navigated the difficult course, connecting with both the thrill of competing and the satisfaction of playing to their best of ability, without interference from T1D, I realized that they did indeed have 'it'.  

I have never defined the girls by their T1D, nor have they felt that a label needed to be added to their identity.  The reality is that both girls are so much more than a disease. This mindset that 'it' is an intangible, amazing combination of the desire to accomplish, to learn, to succeed, to fail and to try again, is what makes them special.  ‘It’ is the invisible stuff that brings out the best of kindness, generosity, strength and perseverance.  The 'it' is in both of my girls and because of that unseen bundle of qualities, both girls will continue to amaze the world with all of the things that they can achieve without limitations; especially without being limited by a strangers’ perceptions of T1D.  

Yes, they both have 'it'

The rest of the match went on without a hitch.  Oldest daughter completed one her best rounds and youngest daughter finished with a great score within her age group.  Even though the talk buzzed of golf, nothing to do with how they played or what they scored came into my mind.

Smiling proudly, as we walked off the course at the end of the day, I couldn't help but to think about how lucky the world is to know our daughters that have 'it'.

Tuesday, June 14, 2016

Patient-Centered Care

It's often the little things (or in this case, the big things) that matter to patients. 

In this case, a 12-year old presenting with an ongoing ear infection is prescribed amoxicillin. 

The prescribed treatment was perfect; a 10 regimen of antibiotics to thwart the bacteria residing in her ear. 

However, the patient can't swallow (nor could I as an adult) a pill this size. 

To a young child, a pill at this size causes fear, panic and frustration.  Even worse, there is a grave chance that the much-needed medicine won't be consumed, thereby negating the positive effects that brought it about in the first place. 

It is times like this that I am sure a simple process designed to remind the clinician, nurse or pharmacist of whom they are treating would have alleviated the entire situation. 

What if there had been a simple system prompt before the script was filled with a note on specific patient needs?  Something as clear as "Can patient tolerate pills?" easily would have remedied this problem.

This is why we need patients to be part of the system at the start of design; so 12-year olds aren't paired with pills meant for adults. 

Together, we can make a difference. 

Thursday, June 9, 2016

7th Grade Writing Prompt; Prompting Tears

This week, we are wrapping up another year of school.  It's been a hectic, busy, hyper-focused month and everything seemed to stall - besides studying, completing projects and taking final exams. Now that we are in the home stretch towards a long summer vacation, much of the work completed at school has been trickling home.

Dated September 16th, 2015, an English journal entry popped out of the myriad of school papers.  With wide eyes and while holding my breath, what I read was one of the most gut-wrenching parenting realities.  As I have shared, the start of the school year was full of 'forgot to bolus', or 'forgot to check'.  Reading her thoughts provides a rear view mirror to the road map that I wished to have found sooner.

Middle school (and a new school for her this year) is tricky on the best of days.  While my first reaction was a wish to have intercepted her words sooner, I know that her inner heart was handled with love and kindness.  Taking a second look through that same rear view mirror, the sentiment that was expressed by her teacher, especially after having only been in class for a few weeks, was the perfect tonic to soothe her worry.  Even better than if the same words had been spoken by mom or dad.  Sometimes the words with the biggest weight and the most meaning, linger longer in the mind when it comes from someone outside of their comfort zone.  Like my girls have teased, I have to love them!  In this case, their teacher, does not.  The result? As we finish this long growth-filled year, she has moved away from the 'forgots', found her circle of camaraderie and eagerly awaits her upcoming summer adventures. She is happy.  She is loved.  She is ready.

If I could change one thing about my life... 

If I could change one thing about my life, it would be to not have type one diabetes.  I would like to not have it because it gets in the way sometimes.  I would like to have the life of a normal 11 year old girl.  If I did not have type one diabetes, I would eat so much food and not put insulin in.  I am a bit tired of people asking me what it is, but if I never had type one diabetes, I would never get that question again.  I know a few other people who have type one diabetes and I bet they would say the same thing.  Even though there is no cure, I am going to live life to the fullest. 

Teacher Response

Thank you for crossing that out.  There is no such thing as a "normal 11 year old girl".  Every single one that I have ever known is unique and special and one of a kind.  Including you. :)