Friday, December 28, 2012


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."