#DAM It Is Not

12 long years ago Diabetes Awareness month became a 'thing' I think about on November 1st. He's living well. He's strong. He's grown up ahead of his years. I don't say much about it these days, in part because everyone has their 'thing'...know this, we are still here doing fingersticks, counting carbs, dosing insulin, battling highs and lows day in and out. We make it look easy. It is not.

#makediabetesvisible

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The Mirror

As we walked side-by-side through the parking garage into the hospital yesterday, his 6' frame towering over me...he said 'I don't really even think about having diabetes except on Endo days and sometimes when I have to check a number.'

'Really?'

'Yeah'

He then went onto say something that briefly caused my eyes to sting.  He said, 'it's weird, but when I look in the mirror...I don't see my POD anymore.  I don't see the CGM.  I just see me.' 

When Joe thinks of himself, he says diabetes doesn't even enter his definition of who he is.

The Endo appointment went well.  Joe continues to do the majority of his care.  He is an active high school freshman and manages to juggle school, being an athlete, and managing diabetes successfully.  His A1C was 7.  A fine number considering his growth and his independence.

He turns 15 at the end of April.  We discussed his drivers permit with his endocrinologist.  You see, driving with diabetes adds another element of risk to just the act of driving.  People with t1d need Medical Clearance Paperwork, in order to get their driver's permit or license.  When Joe starts to drive, he should check a blood glucose prior to driving and every hour if he is driving for more than an hour's time.  He should not drive unless his blood glucose is 90mg/dL, or higher.  Driving low is more dangerous than driving inebriated.

I'm not sure how I am doing with all of this.  Actually, that's a lie.  I do know how I've been doing.  I've been fairly anxious.  High school has been more of an adjustment for me...than for him; I think.  I have had to back off as a hands-on pancreas and trust that I have taught him well.  I have.  Can I just say, at this age, sometimes having that damn Dexcom is a blessing and a curse all in one.  Watching his blood sugar remotely can cause my mascara-fringed eyeballs to bulge outta their orbits when his number is tanking to the 40's, while he is at school or at a hockey practice.  There isn't a darn thing I can do to help him.  I watch.  I wait.  I worry, then I hope and I trust things will be OK.

A day-in-the-life update.

He Should Do That, He Can Eat That, And His Diabetes May Vary

Daily, I am reminded we each, each and everyone of us, have our "thing".  I believe most of us want others to understand, or attempt to understand, our "thing".  

I want more understanding and acceptance for Joe and all persons with t1d.  The daily care, attention, and psycho-social-emotional toll the disease demands can be overwhelming.  To an outsider we can look like we are micromanaging things and making a bigger deal out of things than there needs to be.  Many people do not realize the attention to detail that must occur, in order for things to run smoothly and safely for Joe throughout his days...and his nights.  Misinformation and misunderstanding and subsequently the judgment of persons dealing with this high maintenance chronic condition can be frustrating.  

The following conversation took place a few weeks ago.

"Hi, is this Joe's mother?"

An apprehensive "yes", was answered.

"This is Mrs. (blank), his (blank) teacher."  

*Silence.  He's never liked the subject matter this teacher teaches.  I entered the conversation with trepidation.

"I wanted to learn more about his type 1 diabetes."

"Ohhkay.  What would you like to know about?"

"Well, it seems like he is doing a lot of 'stuff' for his diabetes during my class."

Joe had just experienced a couple of weeks of low-ish numbers.  So, this did not surprise me.

"What time of day is he in your class?"

"At the end of the day."

"Oh well that makes sense.  He has been running a bit low and he most likely is looking at his number and taking sugar.  After school he either walks a couple of miles home or he has hockey practice.  He typically would need to eat a snack for hockey and he might take some sugar tablets prior to walking home... what have you seen him doing?"

"Yes..he is taking some tablets and I have seen him eat.  ..... I also overheard him...and I didn't want to call him out in front of his friends...but he was telling his friends how he drank a chocolate milk, some orange juice, and he ate some Cheerios.  I know that probably isn't good for his diabetes and thought you should maybe know."

*This is where I take a deep breath and remind myself that I am thankful this teacher called me and wanted to learn more*

"It's totally fine if he eats those things.  He would need to give himself insulin for them to cover the carbohydrates.  Sometimes, he uses those foods to boost up his blood glucose or to treat a low."

"Well, it's just..that....  I have some friends who have diabetes....  It seems like Joe is doing more work ...with his diabetes... than they do."

*This is where I again, take a deep breath and remind myself of my gratefulness for her phone call*

"I think your friends  may be a little bit older than Joe (like by 50 years) and they may not have the same type of diabetes, and they are most likely not as active, and they may not be trying to keep their blood sugar in the range that Joe is trying to keep his in.  Each person's diabetes can vary quite a bit."


Teaching teacher about our day-in-the-life.

"Good"?

My vision was tunneling, the periphery clouding.  I had to hunch myself over a bit in an effort to avoid passing out.  I was hoping the lady would stop talking and move on.  The lady was an acquaintance-y friend of mine.  She is the mother of one of Joe's school-mates.  I had not talked to her in a couple of years.

I had just popped off a 5 mile run without hydration.  The humidity and heat were elevated.  It was on July 4th.  I ran into this acquaintance-y friend of mine on the sidewalk about a mile from my home.  About a mile from hydration!

"How's Joe?"

"He's doing well."

"How's his diabetes?"

How to answer?  How to answer?  It's good?  I mean really?  Is it ever good?  Sure.  I can smile and pretend it is all well and fine and that Joe and I just luuuuvvvvvvvv checking blood sugars, counting carbohydrates, and changing pump sites and staving off lows, while avoiding the long-term complications of highs.  The easy answer... the easy answer is just like the response we all give when someone asks how we are doing in passing.  The easy answer is "good". 

Still feeling a bit passing-out-ish...

She (Joe's~school-mate's~mother) then went onto tell me about a childhood friend of hers. She had a childhood friend.  She had Type 1 Diabetes.  She did fine through childhood...grew-up...went to college.  She came home from college for a school break (Christmas Break?  I cannot remember)...she took a nap... she never woke-up...her mother found her dead ... dead from the diabetes.

Welp.  Good to know that I don't have to go with the "good" response here. 

"How's Joe's diabetes?"

The words "good" or "bad" are too polarized.  I need something more general to describe Joe's diabetes on most days.  But then there are some days that "good" sums it up.  And then there are days that the word "bad" is perfect.

My general answer when asked "How's Joe's diabetes?" will be:

Joe's diabetes bears watching and managing; not just day-to-day, but hour-to-hour. 

In response to Joe's~school~mate's~mother about her friend:

I live with knowing that there is that possibility that I will get "the call" someday.  You know, "the call" that your son was found down and has been taken by ambulance to the hospital.  I live with being as prepared as one can be for walking in on an unconscious (or worse) Joe.  I do not live in fear.  I just simply live knowing this is my reality. 

A day-in-the-life of trying to explain being a parent of a child with Type 1 Diabetes.

Our Parenting Conversations Are Different

Six years almost.  Six years since Joe has been diagnosed.  It is strange how a certain acceptance has developed.  As I send him out on his bike, on in-line skates, on foot into our community, as I tuck him into bed at night, as I drop him off at school ... a teeny-tiny part of my heart and my brain is always aware and somewhat prepared for the possibility that I may not see him again. 

The kids were out in the 'hood playing with their friends.  Joe was squirting a hose into a gaggle of girls squealing their protests.  I was prepping dinner by laying out the leftovers on the kitchen island.  Dave walked in from his day of work.

This was last evening.

Me:  "Good day?"

Dave: "Yeah..."

*Or I think he said "yeah".  I was only half listening.*

Me:  "Kids had a good first day of school...Bridget loves middle school ... Joe said his day was boring...blah...blah...blah."

*pause*

Me: "A child died last night.  Seven year old.  Diagnosed at two.  Low or Dead In Bed.  Parents slept through a night check alarm. Found him in the morning."

Dave: "Can you imagine?"

Then, we went there.  We went to a place we haven't gone.  Actually, it is something I had not thought about; one of us blaming the other for a missed night check and a gone Joe.  We are human.  We need sleep.  This family is facing our worst fear; the death of their child.  The night check ... done or not ... may or may not have prevented this death.  The thought of struggling with "the blame" and "the guilt" while dealing with "the grief" is overwhelming.

Me:  "We would not blame one another... would we?"

Dave:  "How could you not 'go there' ?"

Me:  "I guess you are right ..."

A day-in-the-life conversation between my husband and I, as we parent a child with Type 1 Diabetes.