Thanksgiving

Yesterday I stumbled upon a Gone with Wind marathon on AMC.  I love this movie and I love, love the book!  I have read it several times enjoying it more each time.  I have always admired Scarlett O’Hara’s strength, determination and her unrelenting Hope.  Though Rhett Butler delivers the most popular line in the movie, “Frankly, my dear, I don’t give a damn” it is not my favorite.  I love the very last line delivered by Scarlett O’Hara, as she watches Rhett Butler walk away and wiping away her tears she ends the book/movie by saying, "After all, tomorrow is another day!"

As I watched the end of the movie yesterday, this last line got me thinking.  Thinking about tomorrow … thinking about Thanksgiving … thinking about how thankful I am that indeed tomorrow is another day and Ben will be there to celebrate it with us.

Today, as we sit down for Thanksgiving dinner, we will measure serving sizes, count carbs and give Ben his bolus, and my heart will be filled with gratitude.  I am thankful for this clear magical liquid with the very distinctive smell of band-aids which has overtaken the butter compartment in my refrigerator and keeps my youngest son (my baby) alive.  Ben is able to sit with us at our family table and share this Thanksgiving dinner because we have insulin.

I am thankful for Canada, the University of Toronto, the bright ideas of Dr. Fredrick Banting and Charles Best, for the brave young kids that participated in the early human trials, and for Eli Lilly who worked so hard to mass produce the new life-saving drug.

I am also thankful for all the men and women, whose names I yet do not know, who are working diligently to find a cure for Type 1 Diabetes.  Because like Scarlett O’Hara, I have Hope too.  Hope that one day a cure will be discovered.  And one day, one Thanksgiving, we will be thanking a new list of scientists and doctors who cured diabetes mellitus, insulin-dependent, Type 1 Diabetes.  But until that day comes I will be thankful for each and every day in between, because “After all, tomorrow is another day!”  And every one of those days is a gift.

Number Games

One day last week after Ben had come home from school he asked me if he could have a package of Gobstoppers.  I was busy working, and in all honesty was not giving Ben the proper attention.  I quickly said, "Yes, just check yourself first." A few minutes later he yelled from the kitchen, "I am 129 entering 6 carbs." I yelled back (there is a lot of yelling in our house), "OK."

A couple hours later, after I finished working and after I threw something together for dinner, we sat down to eat.  We discussed carb counts and agreed on a total number and then Ben pulls out the pricker to test himself.  Both Jeff and I wait and Ben announces, "291."  I then quickly overreact and again yell, "What!?  You were just 129!  You shouldn't have eaten those Gobstoppers!" Now Ben looks up at me and starts crying and with tears streaming down his cheeks he puts his forehead down on the table so we can’t see his face and he sobs.  I quickly, apologize and try to comfort him.  I knew I had just blown it.

This is exactly how a T1 parent is NOT supposed to react to a blood sugar check!  To be honest Jeff and I fall into this trap too often.  As every T1 family knows, living with this disease means living with numbers, numbers ... and more numbers.  And when you attach guilt and blame (which I had done) or any other human emotion to a blood sugar number you will certainly drive yourself crazy (and make your son cry)!

In our defense, the chart included here represents two weeks of blood sugar checks.  Every black dot represents a number. 

That is just two weeks worth of numbers.  Ben has had T1 for three years.  That's a lot of numbers.  And potentially a whole lot of crazy.  But we are not crazy and we have Ben to thank for that.  Ben, with all his nine-year-old wisdom, has always been able to find a way to turn his blood sugar checks into a numbers game.

One of Ben's favorite games is to quote his blood sugar numbers using NHL hockey player jersey numbers.  The first time he did this was a couple years ago after school when he was checking himself before his after school snack.  He pricked himself and then said, "Mom, I am Patrice Bergeron." Now I have watched a lot of hockey games but I never paid attention to jersey numbers so I had no idea what his number was. Ben played coy with me making me guess.  Eventually, I gave up and Ben finally told me he was 37, which was a bit horrifying, but we quickly treated his low and we moved on.  If his blood sugar is over 100 he uses different combinations of jersey numbers.  If he is 137 he would say he was Roberto Loungo, whose jersey number is 1, plus Bergeron.  As you can imagine, I have learned lots of NHL jersey numbers over the past 3 years playing this game.

Ben also loves to point out interesting number patterns.  Last week he was 215 at exactly 2:15.  At school at his lunch check his blood sugar was 179 and he received exactly 1.79 units of insulin.  He has had the exact same blood sugar numbers two checks in a row.  He loves it when his number is 123.  And almost equally as amusing is a perfect 100.

Another favorite game is to have his brothers guess what his blood sugar will be.  He will ask both Garren and Cole what their guesses are and then he gets to declare a winner.  There is no end to the number of competitions three brothers can create.

We have found over time that when we follow Ben's lead and play along with his games we all stay calm, laugh a little, and remain sane.  Occasionally, Jeff and I still react badly.  But when we do play along with Ben's games we are better able to detach ourselves from his numbers and not overreact.  When we successfully do we are able to see these numbers for exactly what they are, information.

Last week when Ben told me he was 291 I do not know for a fact the high blood sugar was from the Gobstoppers.  He has been able to eat this candy before without causing a high.  The truth is there are 1 million reasons Ben could have been high.  The high could have been caused by something he ate earlier.  He could have been stressed. His pump site could have started to become insulin resistant (and so on and so on).  In the end it was very unfair for me to beat him up (or myself) for a 291 glucose number.  It was not his fault nor was it mine.  291 is just a number and we needed to try to lower it.  Instead of yelling at Ben about Gobstoppers, what I should have said was:

"Hey Ben did you notice that 291 is just 129 rearranged?  How cool is that!?"

A Halloween Conversation

Last week was Halloween.  However, because hurricane Sandy had barrelled through our town just days before our town decided to reschedule Halloween for Sunday night instead (who knew that was even possible).  Garren dressed up as Slenderman, Cole was a can of Spam, Ben was a killer hot dog (in case you are wondering that's a hot dog that carries around a ninja sword), and Jeff was a scary clown. The kids had a great time running through the neighborhood trick-or-treating with their friends.

I know people have been worried about how we handle this holiday with Ben's T1, but after three Halloweens now the holiday isn't as scary as it was back in 2009.  We have worked out a system of keeping some candy and buying back the rest.  We always end our Halloween celebration with a trip to the Target toy aisle.  So far the boys have seemed happy with our changes, but I have never asked them directly.  I thought maybe it was time to ask.  So I sat down with Ben on Monday and asked him a few questions about how his Halloween went this year.

Because talking to Ben is always entertaining I have included our conversation here ...

You learn something new everyday

Sunday began with a 5:30 alarm to take Ben to his hockey practice. This was the beginning of a busy morning, the plan for the day was for Jeff to drive Garren where he needed to be and I would be Ben and Cole’s chauffer.  I rolled out of bed, poured myself some coffee and off to hockey practice we went.

After practice some of the parents brought munchkins and hot chocolate for the kids to share.  Ben grabbed three munchkins and a small cup of hot chocolate. Bolusing after hockey practice is always tricky business because the exercise always has a delayed affect on Ben.  We gave it our best guess, entered the carbs in Ben’s pump, gave him his insulin … and then all at once Ben shoved all three munchkins in his mouth.

From the rink we headed to the baseball field to watch his brother Cole play a double header.  The first game started off in the misty cold.  By late morning the beginnings of hurricane Sandy were creeping into New England and it started to drizzle.  Ben and I curled up together on my folding chair under a blanket and an umbrella and watched the games.  After the second baseball game we had to quickly drive Cole to school for his middle school play practice.  We had almost no time to spare so we stopped at a Subway on the way to pick up lunch.

Cole went through the line first.  He asked for a foot long Italian with turkey, bacon, lettuce, tomato, and mayo along with a bag of Baked Lays and a fountain drink that became a strange combo of coke, orange soda and sprite. (Yuck, I know). 

Now it was Ben's turn.  The young lady behind the counter asked, "What would you like?"

Ben replies, "Can I have a 6 inch Italian with turkey?"

She pulls out the sub roll and places the turkey on it.  Then she asks, "Would you like cheese on that?"

Ben hesitates and then slowly replies, "No … I want some steak."

Now the lady behind the counter, along with me, was a bit confused. She asks, "You want steak?"

Ben says, "Yes."

So the lady behind the counter takes the turkey off his sub roll and puts steak on it.  Ben then says, "No, I want turkey and steak."

Hmmm, I ask, "You want turkey and steak together on the same sandwich?  Have you ever had that before?"

Now Ben pauses and looks at me perplexed.  He then points at the steak.  And then looks at me again. Then very slowly Ben says, "I ... want ... bacon ..."

Ah, I then say, "You want turkey and bacon!"

The whole conversation seemed to happen in slow motion.  It felt very bizarre.  I sensed something was off but we were in such a hurry I did not give it much more thought.

From here Ben proceeded down the line and the young lady built Ben's sandwich for him.  He then gets a diet coke.  We pay and then rush back in the car so we can get Cole to practice on time.

As we are walking through the parking lot Ben pauses and tells me he thinks he is low.  After we get in the car I pass Ben his test kit and then we drive away.  Cole tells Ben he needs to buckle up.  But Ben has the test kit in his lap and he just can't seem to figure out how to get the seat belt to work.  I pull over.  This causes Cole to go into panic mode because he will surely be late for play practice now.  I get out of the car and open Ben's door and ignoring Cole's whining I calmly buckle Ben in.  Then I wait for him to check his blood sugar.  I know that if Ben is low and I attempt to help him with his test kit he will most certainly breakout into tears and start yelling at me.  So I wait ... and indeed he is low.  It was now clear we had messed up the after hockey practice bolus, Ben was only 35!  We all decide that 4 glucose tabs should do the trick.  As Ben starts chewing I jump back in the car and we head off for play practice.

As we are driving and the boys have all calmed down, I started thinking about our visit to Subway.  Then ding, ding, ding the light bulb finally flicks on!  I had read several times about how T1 adults experience lows.  They often describe the mental confusion that overtakes them.  Ben was low in Subway and that is why he had such difficulty trying to tell us he wanted bacon on his sandwich.  I had never seen Ben experience a low this way.  Usually he gets a little shaky (not even that noticeably) and sometimes emotional.  If he had shown either of these symptoms earlier we had missed them while we were both curled up and shivering under a wet blanket.

After Ben’s blood sugar is back up and he is happily eating his sandwich, I try to explain to Ben, "You know one of the symptoms of being low is confusion.  Your head will start feeling jumbled and you can't think well." I then ask, "Do you think that is what happened to you in Subway when you were trying to ask for bacon?"

Ben shrugs his shoulders and says, "No, I was just confused because I had not been to Subway in a long time."

This makes me chuckle a little bit.  The boys (including Jeff) go to Subway almost once a week.  They are all pros on how the Subway line works.  I figured Ben was just too young to really understand what I was trying to explain.  He had been through enough that morning, and he was enjoying his sandwich so I just let it go.

We did finally get Cole to practice, though he was 15 minutes late.  When we pulled in he was all grumbly mad.  As he was getting out of the car another car pulled in behind us.  Cole then turns around and says, "At least I am not the last one here!" And he quickly adds, "Ben, glad you are feeling better.  Bye buddy."

It was only 1:30, but it already felt like a full day.  Although the morning had been crazy madness, I had managed to learn something new.  I still did not have the proper insulin to munchkin to hockey practice ratios all worked out.  But the next time I mess that up (and there certainly will be a next time) I now had one more sign of hypoglycemia to look for, Confusion.

D-anniversary

This summer at the CWD conference the closing speaker was Jay Hewitt, who is a triathlete living and competing with Type 1 diabetes.  He ended his closing speech by challenging us to make T1 the best thing that has ever happened to us.  364 days a year I try my very best to live up to that challenge.  But there is 1 day a year I just can not.  And that day is here.  It’s the day I dread all year.  It’s October 26, Ben’s D-anniversary.  This is day three years ago we received the official diagnosis, Ben has Type 1 diabetes.

I am unsure why this single date on the calendar has so much power over me, but it does.  As the days tick away … Oct 23, Oct 24, Oct 25 … the pit in my stomach grows bigger and heavier.  And now today, I try to hold back the tears.

People often remind me (and I often play this game myself) that there are good things that can come from the bad.  Over the summer we were visiting family and someone suggested since Ben’s diagnosis we have grown closer as a family and we have done great work advocating and raising money for T1 research.  I politely agreed.  But what I really wanted to say was that I would give that all back (plus more) if Ben could have just one more day without the heavy burden of this disease.

Three years ago Ben lost a working pancreas and a care free life.  And as a mother my heart broke and three years later my heart is still broken.  I know this diagnosis is not mine, it is Ben's.  Ben is the one who has T1 and not me.  But as a mother it is hard to separate yourself from your child's pain. 

However, my sadness is about more then just the loss of a pancreas.  Before Ben’s diagnosis we were living the life I had always dreamed of and worked for.  As a girl I dreamed of marrying a nice loving man, Check.  I dreamed of having a challenging and rewarding career, Check.  I dreamed of owning a nice house in the suburbs, Check.  And I dreamed of having three great kids, Check.  I always believed I had some control over my life and if I worked hard and made all the right, moral decisions everything would be ok.  Then on Oct 26 2009, I learned that is just not the way life works.  I do not have the control I naively believed I had.  And without that control things can get kind of scary.

Ironically, “control” is the very word that is often used when talking about living with T1.  I am frequently asked, “Do you have Ben’s diabetes under control?”  I hate that question because we do not. (Please don't ask me ...)  I don’t have the power to control Ben’s diabetes anymore then I had the power to prevent him from getting it in the first place. It just doesn’t work that way.  

Today the tears I hold back are fueled by sorrow but also by fear.  I mourn both the loss of a pancreas and the loss of my carefree childhood dreams.  But tomorrow I will put my happy face back on, I will focus on the positive, and I will remember Jay Hewitt’s challenge.  And as long as I can remain brave, I can still make T1 the best thing that has ever happened to us.

Magic

At Ben's school each semester there is a senate election.  Each grade has two senators and they serve for half the school year.  The students who want to run need a partner, because they run in pairs, and then they have to give an election speech.  Running for the senate is very popular in the 4th grade.  Almost 3/4s of the fourth grade class runs.

Ben and his new buddy C ran and gave this speech:

Hi guys its Ben and C here running for senate.  There is one thing to do, vote for us.  Here are some awesome reasons you should vote for us.  We will have hi-chew sales for 3 packs each kid and the packs are 1 dollar per pack, and the money will go to JDRF (juvenile diabetes research foundation).  We will try to have a pizza night and play flash light tag and man hunt.  The pizza will be $1.25 per slice.  Also we will have a candy guessing contest and the bucket will have all types of candies like Sour Patch Kids, Swedish Fish, Fireballs, Starburst, Pixie Sticks, and more.  We will have sports tournaments.  Donut eating contests and drawing contests also.  Will give you swag like that, and teach you how to do push ups in midair and teach you how to use a banana phone.

Please vote for us!

The speech may seem like the silly ramblings of two 9 year old boys, but I love it!  I think it represents exactly who Ben is.  He is a boy living with what seems like very grown up problems.  He is a boy who starts his day checking his blood sugar and counting every carb he eats.  He is an advocate and a fundraiser working to help find a cure for a disease that affects millions of people across the globe.  But that is just a small part of who he is.  Even though T1 might seem as if it has completely taken over his young life, it has not!  He still loves flash light tag, candy (all kinds), and sports tournaments.

I often worry that T1 has stolen Ben's youth.  But when, I read this speech I smile knowing that there is so much magic left.  He can do push ups in midair!  And he knows how to use a banana phone!  There was also some magic in their speech, because Ben and C won!  Soon the whole grade will be eating piles of candy and talking on banana phones.  I hope the teachers are prepared for all that young boy magic.

Play Dates

When Ben was first diagnosed in 1st grade all of his play dates came to abrupt end.  Over the past few years we have been able to train a couple friends on how to take care of him and he has been able to go on a handful of play dates.  He has even had a few sleepovers with his best buddy A.  (And for that we have been very thankful.)  But for the most part the invitations for play dates stopped.

Now that Ben has started a new school he is making many new friends and the calls to arrange play dates have started again.  When Jeff and I received our first invitation to have Ben over for a play date we both looked at each other and sighed.  We both knew that we needed to let Ben go and we needed to muster up the courage to let him go.  I know that sounds simple enough, but I promise it was no easy task.  We were going to have to dig really, really deep to find that amount of courage.

Before we could let Ben go we needed Ben to agree to some basic rules.

First, if he started to feel low he needs to stop playing and check himself.  Now, I am very aware this will likely never happen.  Not because I don't expect him to go low, but because he will never stop playing long enough to ever realize that he is feeling low.  As a back up we are sure to do a quick training on hypoglycemia with the parent in charge which always ends with this basic instruction, "If Ben becomes incoherent or passes out call 911 first and then me after."

Second, if he is offered any snacks he must first check his blood sugar and then give me a call to discuss carbs counts.  Because Ben has become an expert carb counter we feel fairly confident he can handle this responsibility.

Lastly, he has to check his blood sugar every two hours.  To help remind him to check we bought Ben a watch that allows us to set multiple alarms. He has successfully used the watch alarms to remind him to visit the school nurse during the school day.

I also explained to Ben it was important to follow all these rules because we really want him to be able to go on play dates with his new friends.  For that to happen we need him to follow the rules and to take the lead with his diabetes care.  This felt like a really tough conversation to have with a 9 year old, but I think he understood.

After Jeff and I decided we could let Ben go, I suggested that it was time to get Ben a cell phone.  We had made his brothers wait until they were in the 6th grade and in the middle school before they were allowed to get cell phones.  But I argued since Ben had to communicate with us frequently while he is away we needed to break the 6th grade rule and get him a cell phone earlier.  Now, Jeff hates to break rules!  And he argued Ben could just use the home phone where ever he is.  Since that was solid logic, I let it go (sort of).

With these basic rules in place and some additional parent training Ben has already been on several play dates.  Now, to be clear, both Jeff and I were nervous every time Ben was away.  We sat near the phone waiting for his calls.  And of course, I took every opportunity to point out how nice it would be to just text Ben and check in on him.

Ben followed all his rules and his numbers were great.  Hopefully, we did not scare all the lovely parents away and Ben gets invited again.  Ben has proved he can handle the responsibility.

We had mustered up the courage and I felt like we had won (at least this small battle.)  But my winning had not stopped ... Jeff texted me this today: