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!  

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.

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."

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.