Thanks...giving....

Once again, a whole month has gone by...if you follow along and ride this ride of life with us...you know I am not quiet.  I have a lot to say.  November is Diabetes Awareness month.  I have posted facts every day.  I have spoken at several events...and now...It's almost Thanksgiving....In the craziness of your life...what are you thankful for?  I didn't invite diabetes into our life, and I would not be sad if it left tomorrow...but I am thankful for the opportunities that have come our way because of diabetes.  Friends, personal growth, advocacy for change....Everything happens for a reason right? You have a choice...you can embrace your life reasons...or fight them....last I checked....Life was going to move forward either way.  Something to think about.  If you haven't had a chance...Please check out the facts through facebook (Amy Cramer Bahn) or keep up with Reno on FB too at Reno the Diabetic Alert Dog.

April to October???  Where did May, June, July, August, and September go?  If you know me, you know I wasn't quiet that whole time -- I always have a lot to say!

Why didn't I blog?  The answer is hidden somewhere between we were busy living, and I sometimes second guess myself -- what do I have to say that people would want to read about?

Today, I decided...since some people ask...some people must want to listen to me...if you don't...that's okay too...maybe tomorrow.

When I think back over the last five months and diabetes, I think 504 plans, starting high school, diabetes camp, New York City missions trip, switching pumps, changing the game plan with our service dog -- and I think -- someone has got to be going through the same things and seasons in life.

For that reason, today I write.  It takes a village to raise kids, be healthy and happy, and especially do life with diabetes.  Sometimes it's hard.  Really hard.  There isn't really an good alternative to not deal with diabetes.  You deal.  You find your grown up britches and you move on. Parents are kids with diabetes are tough -- and strong -- and fighters -- we learn everything we've got from our kids with diabetes -- not the other way around.

The other day, I read someone's post that said, "I feel sorry for them. (kids with diabetes)  The hair on the back of my neck stood up as I pondered this thought.  Sorry for them?  Like pity party sorry for them?  So I googled it....

Empathy is a noun and is defined as, “the ability to identify with or understand another’s situation or feelings.” For example,

• I have empathy for those families who lost their house in the storm. A tornado once destroyed my house.
• Having been late to work many times himself, the boss had empathy on the employee who was late.

Empathy is putting yourself in someone else’s shoes to understand that person’s situation. In the example above, the boss, having been late to work himself, had empathy for and understood why the employee was late for work.

Empathy is the newer of the two words, with its first use recorded in 1895. Sympathy, on the other hand, has a first recorded use in the late 1500s.

And the other word.....

Sympathy is a noun and is defined as, “a feeling of pity or sorrow for the distress of another.” For example,

• I offered my sympathy to the grieving mother.
• Their sympathy for the victims led them to donate.

So you can clearly see the difference between the two words. Sympathy is a compassion and sorrow one feels for another, but empathy is more focused around personally identifying with or projecting oneself into another’s situation.

You may feel bad for the person who was just laid off from their job, but if you have never been laid off yourself, you cannot have empathy for him or her. You can feel sorry, have compassion, and give them sympathy, but you can’t have empathy for their situation.

Which one would you use?  Which one do you think I like better?  Both are great words...describing similar feelings and responses to a situation -- like a person with diabetes.  Here's my challenge -- it's hard to understand and feel the daily stress of diabetes if you don't have or live with diabetes.  BUT -- if you work to educate yourself -- understand a little bit more than you did yesterday -- you can change your perspective from pity to empowerment.  From sorrow to action and compassion.
Please don't feel sorry for the kids, especially my kid with diabetes (or any of them for that matter)  Instead think of them as your action hero and what can you learn from them?

To Tell...Or Not To Tell...That's the Question...

More than three years since diagnosis...we are still experiencing "firsts."  J has never hidden diabetes (kind of hard to do with a DAD and an outspoken Mom) He openly talks with, educates others, and isn't afraid to do diabetes, front and center.

Today was different.  Today was new.  And I am not sure if I like it.  He had the opportunity to do some spring cleaning help for a near by family.  I spoke to the mom, found out what he would be doing, all the right stuff -- but I didn't mention diabetes.  On the way over to the house, I asked J if he wanted me to explain anything to the family..if he needed to stop and treat a low..they would understand why, etc..he calmly answered me with, "No, I will take care of it."

Gulp.  I stuttered out a wimpy, "Okay."  I took a deep breath, and realized this was a growing moment.  No, he wasn't hiding diabetes.  He was taking a step closer to independence and owning it.  My caveat explanation here is he can do it.  He is super uber responsible and able to do it.  He attacked diabetes             with a preemptive strike from the time he awoke this moring, in an effort to get his numbers in line for the day.  (He will be doing a lot of manual labor, something that will drive blood sugar numbers low.  Lows are bad.  Lows on step-stools or power tools, extra bad.)  My mom moment...Letting go...so he can prove it to himself..that he can win a round of  "I am bigger and stronger than diabetes."

As he gathered up his things...I almost couldn't contain myself.  He was not in ear shot.  I sooo wanted to say something..give the family a heads up...but I didn't.  Instead I have her number on speed dial.  I am watching his numbers remotely on Nighscout and I am letting him live with diabetes.

This scenario is not how I would have written this script.  Truth be known, I still don't like it...but it is doable.  Diabetes is trial by error, baptism by fire, and living on the edge all the time.

This is J's disease...and today is his day to how it who is boss.  I know he will be fine.  Prayer and good thoughts for his OCD, Type A controlling momma would be most appreciated.

Normal is way overrated...

Life is busy.  Life with diabetes is non stop.  Non stop thinking. Non stopping counting, dosing, corrections, figuring.  Sometimes, non stop worry.

Imagine the desire to build a wall and protect those we love from anything and everything -- including diabetes.  Alas, you can run, but you can't hide..diabetes is here to stay for awhile.

Recently, we returned to Orlando, "the scene of the crime." The place we heard the words, "Your son has type 1 diabetes."  We heard a whirl of other things, ICU, insulin, shots, DKA and who knows what else.  This return trip was different.  It wasn't planned to be anything, yet it was.  For J, it was filled with flashback memories of things and places that he had little recollection of.  For me, it was a moment of remember when...

J is three years down the diagnosis road.  He has a DAD (diabetic alert dog) named Reno.  He uses an insulin pump, a CGM (continuous glucose monitor) and we Nightscout 24/7. He is healthy and overall, normal teenager happy.

This trip, without knowing or trying, became about embracing the new normal. Defining boundaries. Living by our mantra, "He may have diabetes, but it does not have him."  So without much hesitation, a split second decision (almost so I wouldn't change my mind) I suggested something I had fought for 2.5 years.   I suggested he went off the pump for part of the trip.  Something I didn't want, was kind of terrified of, yet was ready to conquer.  An hour later, a call to the MD...and the pump was off...yet so was the CGM (Accckkk!!!!)  Without the CGM, there went Nightscout and the Pebble watch.

You know what?  After I caught my breath (might have been hyperventilating), it was okay.  It was as close to normal as he had been in a long time.  Nothing attached.  No technology.  No constant stream of information.  This was old school diabetes management -- and we were doing it, and it was really okay.

For a brief (felt like forever) two days, checked his blood sugar more routinely (Remember no CGM either), and did shots of Lantus.  We used a system called untethered insulin management, where he actually reattached his pump to deliver insulin instead of bolus shots.  This system worked, and worked well for him. Perfect?  No, but what system is?  Would I do it again?  In a heartbeat.  Why?  Because we are fighters, and diabetes won't win.  Not at home. school or vacation.

Normal is over-rated anyways.

Trust your instinct and...

It was 4:07 am.  The night has begun on an up note...all the known variables pointed towards a quiet sleep.  But then...the pebble (watch) vibrated with an alarm.  Next came the dexcom (continuous glucose monitor AKA our lifeline) alarms -- with a panicked sound.  54 with two double arrows down.  This equals BAD.  My first instinct would be grab juice, test second.  For some reason though, stronger instincts took over and fuzzy thinking cleared.  That doesn't make sense -- knowing full well most of the time diabetes doesn't, but still...I tested his blood sugar first -- 149.  What the what?  Okay, washed his hands, my hands, retested.  153.  Okay -- third time will be a charm. (Background noise is the dexcom screaming its head off..BEEP BEEP BEEP) Third poke, third finger, different hand 161 -- clearly not 49 with one arrow down at this point. Was technology out to get me?  Well no...but it was a sharp reminder that as great of a tool as it is -- a CGM is not bullet proof.

It takes a village to get through the day with diabetes.  Parents, Nurses, Teachers, Friends, Siblings, Doctors.  It takes modern medicine, and hard core parental instinct.  Today I read through social media following several situations where people were struggling with diabetes.  There were also A LOT of opinions given on what to do,..what not to do...things that I am fairly certain could have been covered by insurance and written by physicians.  The "problem" is -- most of our support comes from people who are not doctors.  I am completely okay with that -- if you remember first that you have a team of medical professionals for a reason -- don't be afraid to call them -- and you have your own instinct -- don't be afraid to follow it.  Every child is different, every situation is different, and sometimes the best responses might be very different too.   You and your doctor will know what's best for you and your child.

Technology didn't mean to let me down last night -- and concerned people don't really mean to say things that might not be in the best interest of anyone..The best response to both situations? Big girl panties and carry on...

Dream Big...

In January 1922 in Toronto, Canada, a 14-year-old boy, Leonard Thompson, was chosen as the first person with diabetes to receive insulin. The test was a success. Leonard, who before the insulin shots was near death, rapidly regained his strength and appetite.

Thank you Dr. Frederick Banting.  Less than 100 years ago a diagnosis of Type 1 diabetes was a death sentence.  Literally.  There are people alive today who lived in a time when there was no known successful treatment for T1d.  Today there is a treatment -- not a cure -- for diabetes.  But we are working on that.

This weekend J had the chance to attend a camp founded on a dream of Sean Busby. Sean is a professional snowboarder -- who has Type 1 diabetes. Sean, along with his wife Mollie, lead clinics all over the US through an organization called Riding On Insulin.     

 Pocono Mountains

What is your dream?  Who is your role model?  Whether they have diabetes or not, it is important to set the bar high -- It is also critical  that our kids see and recognize names of people they can follow LIVING and dreaming BIG.

Have a hockey player?  Nick Boyton, Toby Peterson, Max Domi, Cory Conacher, Taylor Vause and the legendary Bobby Clarke

Football you say -  Jay Cutler,  Jay Leeuwenburg

Racing is your thing - Charlie Kimball and Ryan Reed

Basketball - Adam Morrison and Chris Dudley

Water sports?  Gary Hall Jr., Olympic swimmer and Scott Dunton, World Renowned surfer

Golfer - Kelli Keuhne

Do you want to know more about diabetes in sports? Check out some of these resources:

The Diabetic Athletes Handbook

This is an incredible opportunity for kids who play hockey

Dskate

If you are a bike rider, there are rides both through the American Diabetes Association and JDRF

Tour De Cure --- ADA

Ride to Cure - JDRF

Or maybe you would rather walk?  Yep, there is something for you too.

JDRF Walk

Stepout Diabetes - ADA

If there isn't an event or camp out there that interests you or your athlete...maybe it's time to start one...Remember...things happen if you dream big.

~Amy~

What Does Your Normal Look Like?

Normal? Routine? Easy?  Those are words that don't usually go in the same sentence with diabetes.  After the initial shock of a diagnosis wears off, you begin to establish a new way of doing things.  A new normal.  The sooner one is able to embrace a new normal, the sooner the ability to LIVE with diabetes rises higher than the fear, guilt, worry and sadness that are also present.

Normal for us in year one post diagnosis was survival.  Good days and bad ones.  Lots of confusion, and more learning. At some point, the fog began to thin out.  Things became a little clearer.  Dare I say, a confidence was growing that I  wanted to lie claim to -- I wanted to be in charge of diabetes and teach J diabetes was an inconvenience -- not to give it any more credit than that.

Today is another day of carving out the moments of our new normal - even three years down the road.

Today, J left on a weekend adventure of a lifetime to a city he dreams of calling home someday  -- NEW YORK CITY

My "family, friends, and parents" in the #Nightscout  world also help keep my sanity on a weekend like this.  Because of the tireless efforts of the developers of #wearenotwaiting I awoke to the ability to have all of this information -- in front of me -- all the time.  Information overload for some, our normal place.

The newest Pebble watch face for the Nightscout program







Embracing our new normal -- realizing until there is a cure -- diabetes will always be an inconvenience, but not a deal breaker -- has allowed moments like this to happen for my kid.

Easy?  No, that's not going to be a word I use often in the same sentence as diabetes, but necessary is.  Is your normal a good place to be?  If it's not, that's okay..embrace that too.  Take the baby steps to shape life to what you want it to look like... LIVE with diabetes...don't endure it.

What in the world I am doing here?

Friends, (If you are a passer-through, thanks for stopping by!)

As I stare at this blank page, I think...What do I have to say that someone might want to read? What I am supposed to write? What in the world I am doing here? Here being, starting a blog.

No one asks to be on a battlefield -- let alone in the battle against Type 1 Diabetes.  I mean  no one.  Yet, I am here.  J is here. My family is here, and because we are -- at diagnosis and now -- my commitment to myself and them was and is that we will fight - and LIVE with this disease.

Many of you have said what a difference and a help my posts on social media have been to you -- it is because of your encouragement -- I decided to take those posts to the next level -- this blog.

My first or technically second disclaimer, but probably not my last -- I have no idea what I am doing.  What I do know is that I am not alone, and if you are on the battlefield, you aren't either.  Educate and Advocate -- those are two words I say a lot -- two words I believe in with all my heart.  If one person is better off because I spoke, wrote, or said something -- then it's worth it.  See already another disclaimer -- I don't like spell check, and my brain sometimes is very, very busy.  I have a lot I want to share, and my fingers just don't keep up.  I will do my best, but please extend a blanket of forgiveness for typos and sentence structure, now and forever.

Back to what in the heck am I supposed to say here?  I don't know, but I am sure as the days unfold, things will come to me.  Please feel free throw out an idea, a question, a comment.  Someone recently asked me to share our care management strategy for night time --perhaps that will be first blog. (technically second)

Before that..let me simply paint a snapshot of who we are.

We are "The TN Bahn Bunch," "Amy, Stuart, and a whole bunch of kids," "A Crazy Hockey and Soccer Family"  Okay, enough of the name calling..except we are also a family in need of an updated picture...

From (L) to (R)...J who is now almost 14, L is 15.5, G is close to 17, Stuart and Amy (not saying ages) and K (AKA Princess of three brothers...born on Christmas day..really..and she is 12)  Oh yes...Reno, Our Diabetic Alert Dog.

I will probably only write this once -- so pay attention -- Four kids -- all healthy, one happens to be LIVING with T1D.  J=Joshua, L=Lucas, G=Gabriel and K=Katie.  J was diagnosed with Type 1 Diabetes (T1d) a little over three years ago when he was in the fifth grade.  He uses an insulin pump, a CGM, and has a DAD.  I will keep them all (having just had 7 snow days...in a row...You know I must REALLY love them).

So there you have it.  Us in a two paragraph blurb.

What's next?  Let's discover that together.  I am glad you have read this far -- thanks.  I am excited to see what I can learn from you -- and what I am able to share here.  Please check back often...The website is filled with some awesome links, and I will be adding to it as worthwhile things come across my desk. For now, if we aren't connected on FB, send me a friend request. (Amy Cramer Bahn)  You can also see what Reno is up to on his page -- Reno The Diabetic Alert Dog.  As the days go on...it is my goal to merge all things diabetes here...in one spot..for you and for me.  

~Amy~