Monday, September 19, 2016

Squirrel Safety Makes Us Nuts

Image result for squirrel

The days have been flying by.  Our oldest is in her sophomore year of high school and our sweet ‘baby’ is enjoying her last year of middle school as an 8th grader.  With the usual flurry of activity to launch both of them into the new school year, we have had review meetings for 504s, Safe at School and Squirrel Safety.  Yes, I did make that one last one up, but it surely feels like squirrel safety in the sense that we spend approximately one full day on planning routes to safe areas within the school for extra glucose, creating low glucose boxes equipped with enough sugary foods to satisfy an entire village and hiding them so that the said village, does not eat everything should they come across it. 
It’s an emotionally draining endeavor.  I’m not sure how to describe thinking about the worst possible situation, having a reenactment and then, moving along to something light-hearted like a discussion of the Americans with Disabilities law for accommodations.  

And yet, all of us with children that live with T1D do this every year. 

The irony is not lost on my girlfriends.  They understand that while they giggle at marketing messages which showcase parents happily pushing grocery carts of school supplies, I start to wince.  

The reminder isn’t joyful that school is about to begin, but more along the dreaded thought process of:

Did I get my Diabetes Medical Management Plan signed?

Will the school meet to review our 504 plan before my girls start?

How will my child wait until the afternoon to eat when breakfast was 8 hours earlier?

Who will share this information with the bus driver?

What is a three-day field trip?  Are you kidding me?!  Overnight with T1D!!!

The list of worries is long and deep.  Ten years later and I still lose sleep over the anxiety of sending both of my girls every year.  I know that should there be something that they need, there is a reality that despite our efforts in training staff, they may need to handle it completely on their own.

This isn’t just a case of Mama Birdy feeling unable to let baby fly either.  Within our school system, though fully trained, we have approximately 50ish teachers and staff that are faced with hundreds of children that all may or may not need something RIGHT NOW.   

In balancing the need for my teens to blend (which they need to do) along with the necessity to be remembered (never sure until there is an emergency) is the reality that none of our plans are foolproof as T1D is this disease that tends to be elusive, never.doing.the.same.thing.twice kind of rule-breaker. 

If I am not sure what is to happen, how can I expect our teachers and staff to be fully prepared? 

The only way that we have managed thus far is to ensure that the girls take the lead in their own care and that we create a safety net to support them.   Tools like the Dexcom G5 and a cell phone have helped so much. 

Still, the anxiety is palpable.  It’s not just my own either.  The girls feel shades of worry from their own previous experiences. 

School isn’t home and so teachers and staff need to be taught to understand the need for classroom eating, bathroom breaks and even those cell phone beeps that alert to lows. 

Teachers and staff need to be able to share that information with their aides and substitutes because once they are gone and a stranger takes over, the classroom often becomes a wild west hang-out, and the substitute is left to the only defense that they have - suspension write-ups for violations like those cell phone beeps.  Even worse, often bathroom breaks and eating are denied.    

Yet all of this can be worked through and solved. 

We can share, teach and work through any issue with communication and grace.  Our girls are learning to speak up, to advocate and to be responsible.  The skills that they learn will take them through the course of their lives; to the unforgiving professor in college, to the misinformed colleague or manager at work and through every social situation imaginable. 

While starting school is never easy (for any one of us), we choose to focus on the outcome.  It’s one more learning opportunity before they start their next chapter.

One thing that I am sure is safe to assume:

We are going to need a nuttier squirrel safety plan.  

Yes, I know that's bad but I couldn't help myself.   Happy Back-to-school!  

Wednesday, August 17, 2016

Teddy Bear Clinic

A few years ago, the girls participated in a Teddy Bear Clinic sponsored by JDRF in Toledo, Ohio. If you haven't been to one, it is worth a special place on the family calendar.

For little children (and even big kids like me!), special Patient/Caregiver stations are set up by local area non-profits, medical staff and volunteers in an effort to demystify the patient care that goes on within doctors' offices, clinics, even hospitals.

During our visit, each daughter brought along their special Rufus teddy as a 'patient' to the local children's hospital.  As the teddy bears visited their medical staff within the specially designed stations, we watched as our daughters became more confident in what the bears 'needed'.  I remember my youngest, one who still is very quiet in new stations, boldly approaching an immunization station to request that her bear receive all of his injections.  As she held his stuffed paw, she carefully reassured him that he would be ok and it would only hurt for a moment.  A second more and a bandaid to keep him feeling better, and she was ready to move along - but now with a BIG smile.

Even though the room was filled with more adults than children, the confidence in care that radiated from the kids was palpable.  We had a blood draw scheduled for just a few days later, and while the tears didn't completely disappear, there was certainly less of them.  In our world, less tears is a major feat, especially when dealing with the anxiety and stress chronic diseases can bring.

Tomorrow, August 18th, as we go full circle, our two daughters will actually be running their own station at the Teddy Bear Clinic.  If you happen to be near Ann Arbor, Michigan and would like to visit the Hands-On Museum, look for the Naturally Sweet Sisters and their special Rufus bears.

Click HERE for more information on the Hands-On Museum Teddy Bear Clinic.

They promise to make sure your little ones' stuffed animals receive a clean bill of health and hope to give back a little bit of that same 'patient confidence' magic that they too, once received.

Monday, August 8, 2016

What Diabetes Gave Her

I've shared with you before of how our oldest daughter has a desire to persue a career as a doctor.  The discussion of becoming a doctor first came shortly after her little sister was diagnosed with Type 1 Diabetes (T1D).  Oldest daughter often focused on ways she could 'help' her sister through the multitude of pokes, prods and owies.  In the way that we have come to know only as her gentle gift of kindness, she did just that; Oldest daughter helped by learning the art of comforting and later, learning by asking pointed questions to know how to give injections and check blood sugars.  Over the years and throughout her own personal journey into the same land of T1D, Oldest daughter's desire of learning more within medicine never waned; only growing even stronger as her sister flourished.  Years later, she still has this deep seated conviction that she was needed to help.

A few weeks ago, while on the golf course, a smattering of stinging bees found a few of her teammates and even her own exposed arms.  That night I found her packing a first aid kit and explaining that she needed to be prepared for her friends as they counted on her.  While I preach kindness matters, I wouldn't have thought to tell her to do this.  I know it is something deep within that she feels.  

This summer, an amazing opportunity presented itself.  Our oldest was provided with a chance to attend the second annual ICAN Summit held in Barcelona, Spain.  I wrote a bit about how that went HERE.

The experience provided an insight into pediatric medicine around the world.  Oldest daughter had an up close and personal experience with children living with a variety of medical conditions as well as meeting and hearing from policy makers, patient advocates, nutritional experts and healthcare providers on the needs of pediatric patients.

Still, it is hard to explain what she was able to learn, see and take-away from the experience and how her desire to help others has started to come true.

The biggest question she often receives is "What does ICAN really mean?".

To answer in a way that only the power of viewing can have, today, a video was released that compiled the wonderful magic of the week to showcase how the power of children working together in a group like ICAN can indeed create improvement in the lives of others.

This is her world.

This is her way of helping.

And through this experience (and hopefully more to come), her way of helping to fulfill the need to make a difference.

Diabetes may have taken a few things from her life, but I am sure that it also gave her many more wonderful traits.

Now it's up to her to use them.