Friday, December 28, 2012

Confession


Since I started this blog and posting stories about our lives with T1, when I run into friends and family around town I am greeted with comments like, "I have been reading your blog.  You are such a great parent.  Ben is lucky to have you."  Now it is always nice to receive compliments, especially when they are about my parenting (my very most important job.)  If I am to be totally honest I save the good stories for my blog and keep the bad stories (like when I had a "rage" fit over the pile of shoes at the front door) to myself.  But I feel the time has come for a full T1 mom confession.

This November I made an early 2013 New Year's resolution.  In an attempt to better train for the Cohasset Triathlon this coming June, I made a commitment to run a 5K a month.  I started with an early morning Thanksgiving 5K and last week I ran a 4 mile Toys for Tots run.  When I was getting ready to leave last weekend I asked my oldest, Garren, if we wanted to come.  He turned me down because he had an afternoon hockey practice. As I returned to tying my shoes Ben came running over and said, "Mom, I want to run!" 


Now a super T1 mom would most likely respond, "Great.  Go get your shoes on!"  But as you might be able to guess, that is not exactly how I responded.  I thought to myself (hopefully not revealing anything on my face), "Ugh."  Bringing Ben would mean bringing test kits and glucose tabs.  Plus, I have never run with him before.  I had no idea how a 4 mile run would affect him.  It was going to be a struggle just for me to finish.  How can I run and take care of Ben?  


God, just typing that makes me feel badly!  Because in the end Ben didn't come.  I was selfish and scared and I convinced him it would be best to try running something shorter at home first and train for the next 5K.

What had happened to the mother who had made the commitment to never let T1 prevent Ben from doing anything!?

Just two posts ago I had written about how hard it is to say “No” to Ben.  What kind of T1 mom says “Yes” to a popsicle but then “No” to exercise?  I thought about that very question while I was running.  I think there were two main reasons I discouraged Ben from joining me.  


First, I was scared.  The thought of running with Ben in a pack of people and him having a low or even just losing sight of him was unnerving.  I imagined myself wanting to stop and test his blood sugar every 10 minutes. And if I couldn't constantly check him I would instead constantly ask him, "Ben, how ... (huff) ... are you ... (puff) ... feeling?" 


Secondly, I wanted to run just for me. I am already the slowest runner (really I am more a fast walker). If I were to attempt to run and manage Ben's diabetes I would have likely ended up just walking.  And I wanted to run and focus on myself for an hour and not worry about diabetes.  Selfish maybe, but the truth yes.

Something else occurred to me as I was huffing and puffing my way through my run. Three years ago when Ben was first diagnosed Jeff and I had decided that we would make a commitment to regular exercise in the hope we would inspire Ben to do the same.  I had successfully done that very thing, Ben wanted to run too.  And now it was time to push past the fear and help Ben learn how to manage his diabetes while running a 5K.

So I am ending 2012 with no "mother of the year" awards.  But I am starting 2013 with one more New Year’s resolution.  Not only will I be continuing my commitment to running a 5K a month, but I will also start training Ben to run his very own 5K too!  

Friday, December 14, 2012

A Night in the Life

Over the past few weeks we have been struggling with late night high glucose numbers.  We have tried changing the time Ben eats his bed time snack.  We have tried changing around his snack choices.  We have even avoided eating bed time snacks altogether.  We have adjusted his basal rates.  But we have had little success.

Then Sunday night, after a busy weekend, I decided to go to bed early.  Jeff was going to be up late working on his computer, so after I tucked in Ben and his brothers I went straight to bed myself and I quickly fell asleep.  Then around 11:00 pm I woke up and did a groggy debate with myself, "Should I get up (out of my warm and cozy bed) and check Ben?"

I argued, "Why get up?" … "There was no chance Ben would be low. He hadn't been low at this time of night for weeks. I was going to get up at 3:00 am to check him. And if he is high I can correct his blood sugar then."

These all seemed like sound arguments.  So my exhausted brain decided to stay in bed and within seconds I was dreaming again.

Soon I was startled out of my sleep by the bathroom light and the opening and closing of doors.  As I rubbed my eyes open I looked at the clock, it was 12:30 am.  Jeff soon came back in the bedroom looking very unhappy.  I asked, "What is going on?"  He said he had checked Ben when he came up to go to bed and he was 54.  I was shocked, "Seriously?  Are you sure he wasn't 254?"  That would have made more sense to my jumbled brain.  But nope, Ben was low.  Jeff quickly left the room and I heard him walking down the stairs on a mission to retrieve apple juice boxes.  I must have then fallen back to sleep because soon I was again awoken when Jeff pulled the covers back as he eventually got into bed.  Jeff quietly mumbled, "I gave Ben a juice box and will check him again in 15 minutes. Go back to sleep."  I quickly went back to sleep.

But it was a T1 mom sleep.  It was a groggy dreamy sleep, but still not 100% asleep.  It was a worried sleep.  And soon I was hearing the worried voices.  (Yes, I do hear voices in my head.)  The voices first start quietly nagging.  "Wake up.  How is Ben?" But as I already stated I was tired.  It was going to take more then a polite reminder to wake me up.  So soon the voices started yelling at me!  "WAKE UP!  YOU NEED TO CHECK BEN?"

I sat straight up.  I looked around the dark room and saw Jeff sleeping right next to me.  I remembered he had said he would check Ben, but did he?  I didn't hear him get up.  I poked his back until he rolled over, and I asked, "Did you recheck Ben?" Now Jeff sat up startled.  He looked at the clock and then he got out of bed grumbling.  He left the room to check Ben.  And for the second time in one night Jeff came back in the bedroom looking very unhappy.  As Jeff was unwrapping a juice box he said, "He is 52! He went down and it has been 45 minutes since I gave him the last juice box.  How is that possible?" Jeff must have realized I had no good answers, because he left the room without waiting for me to speak a word and gave Ben his second juice box of the night.

When Jeff returned I told him to go to sleep, I would recheck Ben.  It was almost 2:00 am.  I knew there was no way the voices in my head were going to let me sleep now.  So I lied down, rolled on my side and watched the clock tick away 15 more minutes.  When I finally checked Ben again he was 118.

With Ben's numbers heading in the right direction I could now safely go back to sleep ... but it was too late.  The voices in my head were not going to leave me alone.  I suppose the voices felt empowered now and they wanted to solve all my problems. So they started to pepper me with questions.

"Why was Ben low?"
"What do you think his number is now?"
"When are you going to send out your Christmas cards?"
"By the way, you're getting fat and you need to exercise more."
"Is there enough milk in the fridge for breakfast?"
"What do you think Ben's number is now?"
"Are you ready for your work meeting tomorrow?"
"What do you think Ben's number is now!?"
"And, do you hear us? You're getting Fat!"

It took hours for the voices to tire of their endless nagging and questioning.  Though these voices are annoying (and at times mean) and I wished the voices would just shut up and go away, at the same time I was grateful.  I was grateful that they woke me up when I needed to be!  Eventually, I did fall back to sleep.  And I had about as good a night of sleep as I have had since Ben's diagnosis.

I suppose Type 1 Diabetes never sleeps and neither do T1 parents.  So if you run into me and I am unusually grumpy, please forgive me!  It is quite likely that the voices kept me up again ... And though they can be life-saving, they aren't always particularly nice.

Tuesday, December 4, 2012

Wouldn't it be easier to just say No?

This year, my brother and his lovely new wife flew into Boston from California to spend the Thanksgiving holiday with us on the east coast.  The night before they were flying home my mother arranged one more family dinner cooking up all our favorite Puerto Rican dishes.  After all the rice and beans were gone and we finished fighting over the last plantains the kids ran off to play and the rest of us sat around the table chatting and complaining about our over stuffed bellies.

Soon after dinner, Ben came running back into the dining room and announced he wanted to have a popsicle!  Like every other T1 mom my next question was, "Do you know how many carbs are in the popsicle?" Ben said “No” because part of the nutrition label had been ripped off the box.  He quickly ran back to the freezer and pulled out the box to show us.  Indeed only half of the nutrition label was left, and it wasn't the side with any useful numbers.  Ben and I then started our guessing game.  I suggested it was 10 carbs.  Ben quickly countered with 5 carbs.  Jeff quickly insisted we Stop!  The guessing game drives him bananas.  Jeff likes to deal with facts.  So he pulled out his Blackberry and googled "Dora the Explorer popsicles." My brother-in-law then pulls out his phone and insists his iPhone can find the nutrition info quicker and challenges Jeff to a race.

All the while, my brother is quietly watching this whole scene play out. At one point he interrupts and asks, "I don't mean to be rude, but wouldn't it have been easier to just say No?"

This question caught me a little off guard.  I answered with a "Maybe." I really was not sure how to honestly answer the question.  I thought about it a few more seconds but my attention quickly returned to the carb guessing game and the cell phone race.  Eventually, the Blackberry wins and we find the exact nutrition label.  The carbs total 14 and to Ben's delight the serving size is 2 popsicles!  Ben enters 14 carbs into his pump, grabs 2 popsicles, and races off to play with his cousins.

Since that dinner, I keep finding my thoughts continually returning to my brother's question.  Would it have been easier to just say "No"?

Before Ben was diagnosed I naively imagined that managing life with Type 1 Diabetes was simply as easy as just saying "No" to some "unhealthy" food choices.  Jeff and I very quickly learned that was very far from the truth.  When we returned home from the hospital after Ben's diagnosis, Jeff and I made a commitment to do our best to not fill Ben's life with “No's”.

Even though we dream for Ben to live a carefree life, we have learned this simply is not Ben's reality.  There are still many times when the only answer is “No”.  Just yesterday before dinner we checked Ben's blood sugar and he was only 39.  We had to tell him, "No, you can't eat yet. We need to get your sugar back up first." And believe me, this is not what you want to hear when you are hungry and have been waiting for your favorite plate of pasta and meatballs.

We have also agreed on a very short list of foods that are simply "No" foods:  bagels, big soft pretzels, and over-sized slushes.  Beyond those few food items we do our very, very best to help Ben enjoy everything he wants to eat.  So last week when Ben asked to have a popsicle both Jeff and I did not hesitate.

However, if I am being totally honest, our commitment to helping Ben manage his diabetes is not the only reason I did not say "No".  The truth is I have always (even well before Ben's diagnosis) struggled with saying "No" to Ben.  His brother's have always marveled at how easily Ben could get me to cave in.  Ben has the sweetest face.  He simply needs to ask me for whatever he wants and then look at me with his puppy dog eyes and pouty lips.  I immediately melt.  Both Garren and Cole have attempted to mimic this face, but it never works.  If I continue to be honest, the fact that Ben is my youngest and will always be my baby gives him additional powers over me that his brothers just don’t have.

Now all of this was true well before Ben was diagnosed with Type 1.  As I have noted in previous posts, when I learned and really understood how this diagnosis would affect Ben’s life, my already weak heart broke into one million pieces.  Since that day it takes all of my motherly strength to disappoint Ben with a “No”.  If he gives me his pouty face, I have to look away!  Otherwise, all my sadness and guilt will overwhelm me.  And my need to just make his life one tiny bit better will lead me to give in and say “Yes” when a “No” is the appropriate answer.  Over the past years, I have learned that there is so much more to raising a child with T1 then counting carbs, managing insulin and visiting doctors.  And I know disappointing Ben and telling him “No” will continue to be a challenge for me. 

So finally after a week of thought and soul searching, I have an answer to my brother's question, "Wouldn't it be easier to just say No?"

If he were to ask me again I would now say, "No!  Living with Type 1 Diabetes does not (and can not) be a life filled with of No's ... And honestly, I couldn't say No even if I wanted to."

Thursday, November 22, 2012

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 DiabetesBut 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.

Tuesday, November 13, 2012

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!?"

Thursday, November 8, 2012

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 ...





Friday, November 2, 2012

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.

Friday, October 26, 2012

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.

Sunday, October 14, 2012

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.

Wednesday, October 10, 2012

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:


Saturday, October 6, 2012

A Bump in the Road

I have not written a post in awhile.  Instead of writing blog posts I have been busy writing emails and letters attempting to explain the importance of proper diabetes care to the faculty at Ben’s new school.

Ben was diagnosed in 1st grade and he spent the next three years being cared for by the same (totally awesome) school nurse.  I always appreciated how great she was at taking care of both Ben and me.  But what I did take for granted is that this relationship took three years to build.  We showed up at the school nurse’s office three years ago loaded with paperwork, diabetes supplies and worry.  And she thoughtfully and patiently guided all of us (Ben, Jeff and me) through Ben’s transition back to school.

This September Ben made another transition to a new school and a new school nurse.  And this transition may have been my toughest challenge yet.

We made several mistakes along the way.  First, we only meet with the new school nurse once just a week before school started.  Because Jeff works at the school we knew that there already was a student at the school with T1, so we mistakenly assumed the staff was well informed about T1 and we could avoid having to give any T1 training.  We also assumed the school nurse already had a care plan in place that we could follow as well.

Now I have read close to a thousand times that everyone’s diabetes is different.  So I should not have been so surprised the care plan in place for the other student was very different then the care plan we wanted for Ben.  Once we realized this we hoped just explaining what changes we wanted for Ben would be enough.  But it was not that simple.

I arranged a meeting with his homeroom teacher and we reviewed the basics of his care plan.  His teacher was attentive and thoughtful and I left that meeting feeling confident Ben would be safe while he was there.  But this year Ben no longer has just one teacher and one classroom.  He has a homeroom teacher, a math teacher, a science teacher, an art teacher, a drama teacher and several more teachers coaching sports.  That is a lot of teachers to attempt to train.  The new school year was in full swing.  The staff was busy helping the boys settle into their new school.  Ideally, we should have spoken to all of them before school started.  But we did not know Ben’s schedule before the first day of school.  And again, we assumed everyone already knew what to do.

In the hope of reaching all of Ben’s teachers quickly and efficiently I started my letter writing campaign.  I attempted to explain why Ben’s diabetes care is our number 1 priority.  I also sent the staff worksheets explaining the basics of T1 care and the risks of high and low blood sugars.  I received a couple quick replies and thank yous.  But I was still worried that they did not “get it”.

One of the toughest things about living with T1 is the constant need to explain the disease and why it is so important to always stay vigilant.  It is already exhausting trying to manage T1 every day (and night).  But on top of that, constantly having to explain that Type 1 diabetes is not the same disease your grandmother had can be emotionally exhausting.  And the very hardest part is trying to explain that all the risks we fear are REAL.  Jeff and I have helped Ben through several scary lows.  They are not some imagined or unlikely possibility.  What I hoped that the school staff understood is that Jeff and I are NOT crazy, overprotective parents.  We are parents that have held our near-unconscious son in our arms praying that his blood sugar comes back up in time.  We are parents that meticulously check our son’s blood sugar and record these numbers in the hope we can keep them in a healthy range and we can avoid too many highs and lows.

Every day Ben went to school I worried.  Every day I questioned whether it was even safe to send Ben.  But Jeff was nearby and Ben has always been so good about taking care of himself.  I had faith Ben would be able to do the right thing if needed. (He had already proved to me he could on his very first day of school. )  Slowly, very slowly, we got the school nurse and the staff to understand how we needed Ben cared for.  It took weeks.  It took patience.  It took determination.  And it took some tears (a lot of tears).  Today, I do believe the school faculty “gets it”.  The new school nurse and the staff have been receptive to my letter writing campaign and have made every accommodation (and more) that I asked for.  I finally feel more confident that Ben is safe.

Ben has now completed his first month of 4th grade and he could not be any happier.  He comes home from school excited to do his homework (no lie).  He loves the new freedom he now has.  For “Back to School Night” the boys each wrote a letter to their parents that they left on their desks.  Here is what he wrote:
 
 
Dear Mom and Dad,

Welcome to my desk. :) I'm having a BLAST!  I know a lot people who have older brothers here too.  I have really nice teachers for my classes.  It's really, really fun here!  I hope Garren and Cole are having fun too.  Thanks for bringing me here.

Love, Ben

P.S.  When I go to my classes I take the long way so I see more stuff.


I love his P.S.  It reminds me that life can be a long and winding road.  And even though you may feel like you are about to drive over a cliff, you should stop every once in awhile to enjoy the view.  Looking back over the last several weeks, and looking past all the frustration, worry and tears, I see a strong and happy 4th grade boy who LOVES his new school.  Knowing he is truly happy makes the last month seem more like just a bump in the road.

Thursday, September 6, 2012

First day of school

Today was the big day … all three boys are now at the same school!  They are now all attending a private “all boys” school in a neighboring town.  The school starts in 4th grade and ends in 9th.  Ben just started 4th grade, Cole is in 7th and Garren is in 8th.

This afternoon I picked up the boys and I was anxious to hear about their first day.  When Ben jumped into the back of the car he told me he was hungry and wanted to eat his snack.  I suggested he check himself and then he could have his snack.  He did and he was 132.  Hmmm ... Excellent.

On the ride home I peppered the boys with questions about their day.  While we were chatting, Ben interrupted us and said, "Guys, I didn't realize how much freedom you had at your school.  Last year when we walked around school you had to always follow a teacher and stay in a straight line.  And you could not talk or you got a lecture on being quiet."

Ben may not have realized how much freedom his brothers had at their school, but I did.  It's a dream for an active young boy to be able to walk/run independently between classes.  But for me it felt more like a nightmare.  Last year in 3rd grade Ben spent the entire day with his one teacher in their one classroom that conveniently was just 12 feet away from the nurse's office!

Last week, Jeff and I met with the new school nurse, Mrs G. to discuss Ben's day.  She suggested Ben come to her office three times a day to get his blood sugar checked and receive any correction boluses he may need.  Mrs. G's office is located in a separate building from Ben's classrooms.  Ben would now have to leave his school house and walk across a small parking lot to see the school nurse.  He was no longer going to be constantly under the watchful eye of either his teacher or the school nurse.  The plan all seemed reasonable but I was nervous (really nervous).  So this morning before Ben left for school I insisted he keep a tube of glucose tabs in his pocket.  I told him that if he felt low at all that he should just eat a tab.  He did not need to wait to see the nurse to check his blood sugar.  If he felt low eat a tab and no one would be angry.

This afternoon after we got home the boys started unpacking their bags.  And Ben pulled out his tube of glucose tabs from his pocket and he said, "Mom, I took 2 and half glucose tabs today at school."

I was surprised.  The nurse had not written that down on his log sheet!  So I asked, "When did you do that?"

Ben explained, "At the very end of the day when we were getting ready to leave.  I felt really shaky.  I was really, really shaky mom.  So I took a tab and then I took one and half more until I felt better."

He tells me this whole story with a big smile on his face.  He was so proud of himself.  And honestly, even though I was horrified, I was proud of him too.  Ben, who is only 9 years old, had done exactly what he needed to do.  This all happened as he was walking out to meet me.  And when he did get in the car he was 132!  He had taken the perfect amount of tabs, 2.5.

So today I end my day, in awe of my son, and just a little (teeny tiny bit) less nervous about tomorrow.

Wednesday, August 29, 2012

Brothers


One evening in July when we were at the CWD conference, I asked Garren and Cole how they were enjoying their sessions.  I asked questions about how their sessions worked and what they talked about.  They explained to me that often they get separated from the kids with T1 so they can discuss issues specific to being a sibling of a kid with T1.  I continued my probe and asked what kinds of things did the kids bring up.  Cole said a lot of the kids mentioned that their parents spend more time taking care of their T1 brother or sister and less time on them.  hmmm ... interesting 

So I asked Cole, "How do you feel about that?  Do you think we spend more time with Ben?"

Both Garren and Cole replied, "Yes."

I then asked,  "Does that bother you?"

Cole quickly responded, "No!  Because I know that is what you have to do."

Seriously, my boys are pretty awesome!  And I think its time to devote a post to Garren and Cole and let the whole world know (or at least the handful of people who read my blog) how truly great these two T1 siblings really are.

To start, Garren is our oldest.  He has been the light of this family since he was born.  He has a talent for being able to chat as easily with an adult as with a toddler.  I marvel at how self-assured he is.  In social settings I tend to be wallflower, but not Garren!  Within a few minutes he will know the names of everyone in the room and he will even have several new cell phone numbers to text to.

Cole is a thinker.  He never stops asking questions.  When he was young he would pepper me with questions.  He would want to know how the seasons worked, how far was it to China, and why was the sky blue.  Once after a long day of questions I had to tell him I just did not know all the answers!  And Cole, the ever-clever toddler, responds, "Mommy how could that be true, you went to college twice?” To this day he is still asking questions (thankfully, I am no longer his only source for the answers.)

Now to be clear, my boys are not angels.  At times I find myself refereeing their arguments.  I often refer to them as the "bicker brothers."  Believe me, a three-hour car ride to visit their grandmother in Maine can be extremely painful.

But at the same time I know how much they do love each other.  They have proved it to both Jeff and me time and time again.  Since the day we came home from the hospital after Ben was diagnosed these two brothers have been nothing but supportive.  They have made sacrifices without complaint.  They have learned to carb count.  They have taken care of Ben through both highs and lows.  They have even worked to raise money for JDRF in the hope of finding a cure!

I have often been teased that I love Ben the most.  Admittedly, since Ben’s diagnosis Jeff and I have definitely spent more time taking care of Ben and worrying about his diabetes.  We have spent hours and days working on raising money for JDRF.  And I have spent hours writing stories for this blog.  But in no way does that mean I love Ben the most.  How could I when Ben has two of the greatest brothers, Garren and Cole!

Wednesday, August 22, 2012

Ben's D.A.D

I have read on several blogs and other T1 online forums about Diabetic Alert Dogs (D.A.Ds).  According to the stories many families have found these dogs very helpful and more importantly life saving.  These service dogs are specially trained to detect, by scent, if their owner's blood sugar is either too high or too low.

A few months ago Jeff and I considered getting a D.A.D for Ben, but then we found out how much they cost! You could buy a car with the money it takes to train these dogs.  And since the check engine light in my car keeps warning me I might just need a new car soon, we decided against it.

To be honest, even though I had read countless success stories I remained a bit sceptical.  I am a cynic by nature.  Could a dog really reliably detect if Ben's glucose levels were too high or too low? Thing is I had already seen proof that it just might be possible to detect a high.  On several occasions Jeff has been able to smell Ben's skin and detect a super high blood sugar.  I have witnessed this with my very own eyes.  Yet I still had my doubts about anyone (including a dog) being able to smell a low.

Last night, after work I went out for drinks with several coworkers.  During the evening we started chatting about service dogs (I work with many, many pet lovers).  And someone asked me about getting a D.A.D for Ben.  I told them about the cost, which Jeff and I were unwilling to pay, and about my doubts about whether they were really worth the cost.  I told them how Jeff had been able to smell a high blood sugar which made some sense to me.  I assumed he smelled an extra sweetness.  But how do you smell a lack of sweetness?  So we then theorized about how well the dogs could really do this and detect a low.  By the end of the evening, all the dog lovers insisted that we should get one, regardless!

Then when I got home last night, Ben was in the basement playing Xbox and Jeff, Cole and Garren were upstairs watching the Little League World Series.  Soon after I arrived home Jeff called Ben upstairs and told the boys it was bedtime.  So after a few more reminders (the boys never stop playing Xbox that easily) Ben came up stairs and gave Jeff a good night hug.  Then, with my very own eyes, I watched Jeff pull Ben closer and smell his hands and then say, "Ben, before you go upstairs check yourself because you smell low." 

What?!  Did I just hear that?!  Ben went and checked himself, and indeed he was low!

Oh my God! It's totally possible to smell a high and a LOW blood sugar.  I no longer doubted any of the stories about how awesome D.A.Ds really are!

But now I know for certain, we do not need to buy Ben a D.A.D.  He already has a Diabetic Alert Dad

Sunday, August 19, 2012

Our Trip to the West Coast ... and Looney Tunes

I finally feel like I can breathe.  I have spent the last week with a very heavy heart.  I felt as if I leaned too far forward the weight in my chest might just topple me forward and I would land on the floor flat on my face, and there I would stay.


But like I already stated, I can finally breathe again, and now I can tell our story.

It all started two weeks ago.  Our family packed our bags and headed to Boston Logan airport to fly out to California.  This would be our third trip to the west coast and across three times zones over the past year.  During our two previous trips we struggled to keep Ben's glucose numbers in a normal (and safe) range.  Our theory on these high numbers has always been that the time change wrecks havoc on Ben’s system.  I assume all our bodies go through the same process and we feel it as jet lag.

This time Jeff and I made a plan.  We would check Ben's numbers frequently and we would not be shy about giving him aggressive correction boluses.  We hoped if we stayed on top Ben's numbers we could prevent too many extended highs.  So as soon as we start seeing high glucose readings we would start “bolusing in anger”.  This is a term I stole from other diabetes blogs, which describes giving insulin, often more than you usually do, to bring down a particularly frustrating high glucose number.  (Please, please no one should take this as medical advice!)  But this was our plan.

When we arrived in Los Angeles last week we slowly watched Ben’s glucose numbers climb.  We quickly decided it was time to start blousing in anger … and more anger … by the end of the day we were really enraged … but when Ben went to bed he was still high.

Our second day in California was the day of the wedding.  Yeah!  Ben’s godmother was the bride and she invited him to be part of the wedding party.  He was thrilled to be able to wear a tux.  But the morning of the wedding Ben woke up still high.  Jeff and I decided it was time for drastic measures; it was time to “basal in anger.”  (Again, please do not take this as medical advice.)

I will take a quick break from this story to explain the difference between bolus and basal insulin.  I am stealing this definition from www.lantus.com.  “A normal pancreas delivers 2 basic forms of insulin: a 24 hour-a-day, low level supply known as basal insulin, and bolus insulin, the large doses it releases in response to meals.”  (I hope that cleared everything up.)

Because Ben wears a pump, we can easily increase his basal rate.  So we increased his basal rate by 20%, and we crossed our fingers.  Right before Ben was about to walk down the aisle we gave him a quick check.  He was in the 200s, so far so good!  Now I could enjoy the wedding ceremony without constantly watching Ben for any extra bead of sweat or any other sign of a high or a low.  We checked Ben again at the reception before dinner was served, and miraculously his reading started with a 1!  Jeff and I gave each other high-fives and joked about rage bolusing and rage basaling. (A joke only Jeff and I found amusing.)  After dinner, Ben and his brothers danced the night away!  After hours of rocking the dance floor, Jeff and I thought it was time to bring Ben’s basal back down to normal.  That might have been a very big mistake because that was the last time we saw a glucose reading in the 100s.

The following morning Ben woke up with a reasonable number, a number that did not scare me.  So we decided we didn’t need to basal in anger and left his pump alone.  We spent the day visiting with family and visiting the Santa Monica Pier.  During the day we checked Ben several times and watched his numbers slowly, slowly move up.  We continued to bolus in anger, hoping that the next reading would bring good news.  We also tried moving Ben’s pump insertion site, we changed Ben’s insulin bottle and we continued to rage bolus, but Ben’s numbers remained way too high.

Our last day in LA we went on a Warner Bros Studio tour.  We arrived thirty minutes early so we waited in the gift shop.  We had already discussed with the boys that we were not going to buy anything, but they were welcome to look around.  We laughed at all the cool Looney Tunes memorabilia.  Then Cole and Ben headed off to the Harry Potter section and inspected all the wands.  Right next to the Harry Potter section is an Italian gelato stand.  The lady behind the counter let the boys sample the flavors, and they quickly talked Jeff and I into buying them all one.  Ben chose a lemon flavored gelato which he described as “the best thing he has ever tasted.”  So everyone made their choice and we sat down to enjoy the gelato.  Before Ben could eat we checked his blood sugar.  We were hoping for a number in the 200s but instead Ben was in the 400s.  Oh God!  After a quiet but heated “discussion”, Jeff and I decided Ben just couldn’t eat the gelato.  Everyone dumped what remained in their cups.  Ben’s eye welled up and he sobbed. 



Now my heart felt like it might explode.  It felt as if Wile E. Coyote had just dropped his anvil and again missed the Road Runner but hit me instead!  Jeff knew how I felt.  He gave me the “eye”.  He was worried I was going to give into Ben’s tears.  But I could not bear the weight and I whispered to Ben and Cole that they could go find something in the gift shop.  They quickly ran off.  And soon I was buying overly priced magic wands.

Eventually, the tour started.  Beyond making the Looney Tune cartoons, the studio has created several hit TV shows.  We saw the sets of  “The Big Bang Theory,” “Gilmour Girls,” and “Conan O’Brien”.  We got to sit on Central Perk’s sofa from the set of “Friends”.  We did end up really enjoying the tour.   I definitely would recommend it.  (Plus I hear the gelato in the gift shop is delicious.)

The following morning it was time to fly home.  Ben woke up again with a super high blood sugar.  I had tossed and turned all night worrying about this very thing.  I was scared (almost petrified) to get on the plane and fly for 5 hours with Ben’s numbers dangerously high.  I questioned whether we should get on the plane.  Maybe we should be heading to the nearest ER instead.  But, Jeff insisted.  He insisted we just needed to get home!

And now we are home.  We have been home for a few days now.  And Ben’s numbers have slowly come back down into a safe range.  The boys have spent the week at summer camp and Jeff has been chatting with the camp nurse about Ben’s diabetes.  I have been a little out of the loop.  So today while at the office I texted Jeff, “How were Ben’s numbers today?”  Jeff responded, “Good! 125, 290, 122, 118, 102.”  I gasped.  All that extra weight was finally being released.  I no longer felt like the victim of Wiley E Coyote.  Finally, I felt like the Road Runner!  We had survived.



I suppose in the end we still have not managed to successfully travel through time zones.  But, we haven’t given up.  We will try again!  But for now I think we might limit our next trip to just flying north and south.