Wednesday, June 27, 2012

I believe in Angels

I have always believed in angels.  When I was young I believed cute winged cherubs were buzzing around me always protecting me.  As I grew older my visions of angels slowly changed.  No longer did I dream of baby cherubs.  Instead I have come to realize that God’s messengers actually live among us.  And there is one living in my home town, working in our elementary school, taking care of our children.  Her name is Mrs. L, our school nurse.

I have written about Mrs. L in several of my posts.  I have chronicled how she helped Ben return back to school after his diagnosis, and how she guided Jeff and me through that process.  For three years she has lovingly taken care of Ben, through 1st grade when he was first diagnosed, through 2nd grade when he transitioned to the pump, and now through 3rd grade.

Before every school year I gave Mrs. L Ben’s official doctor’s orders.  The orders note when Ben must be checked and how much insulin or carbs Ben would need to correct a glucose number that is out of range.  But Mrs. L did so much more for Ben beyond these scheduled glucose checks.

When Ben begged me to not pack his lunch and let him buy the school lunch with his friends, Mrs. L agreed to help Ben count his lunch carbs everyday.  Mrs. L along with the angels who work in the school cafeteria (yes, there are angel lunch ladies too) checked nutrition labels and researched online the carb counts for every school lunch served.  Mrs. L would negotiate with Ben (which is no easy task) whether he should have regular milk or a chocolate milk with his lunch each day.

Mrs. L patiently took care of Ben when he was low.  She would call me at the office to discuss how many carbs to give him.  Then Ben and Mrs. L would chat about the Bruins or the Red Sox while they waited the obligatory 15 minutes before they could retest.  Mrs. L was able to turn this annoying and painful wait into the highlight of Ben’s day. 

Ben loved the time he spent with Mrs. L.  But now the school year has come to an end.  Ben is leaving Mrs. L and his elementary school.  Next year he will start 4th grade at a new school with a new school nurse.  The last day of school Ben gave Mrs. L a thank you gift.  He picked out a Bruins’ iphone case and wrote her a lovely letter.  He ended the letter with this quote:

“I will miss you more than the Bruins will miss the Stanley Cup!”

I am certain that is true for both Ben and me.  Since Ben’s diagnosis my life has been full of worry.  But when Ben was at school I didn’t worry!  I knew that God’s angel was taking care of Ben.  And for that I will be eternally grateful.

Friday, June 15, 2012

My T1 Mom Aha! Moment

I started this blog telling our T1 story.  I started with Ben’s dx date in October of 2009, and then left off during his honeymoon in the summer of 2010.   I left that story two posts ago, but I now want to pick it up again.

In the fall of 2010 Ben started 2nd grade.  We started the school year with a visit with the school nurse, Mrs. L, and his new 2nd grade teacher, Mrs. P.  We explained to Mrs. P what T1 is and what we needed to do take care of Ben during the school day.  We also discussed what the signs of hypoglycemia are and what Mrs. P should do if she suspected Ben was having a low.  But in the fall of 2010 that never did happen.  Ben’s honeymoon was ending.  We were no longer fighting lows but instead we were fighting highs. We watched Ben’s blood sugar numbers slowly creep up.

The days of only one shot a day were gone.  Ben needed more insulin.  We moved to a sliding scale to dose his insulin.  We found some success with the new sliding scale but felt it was not enough.  At the CWD conference in July, we met a lot of people who used the pump.  They all seemed to appreciate the flexibility and control that it provided them.  Ben had met several children that used the pump and thought it seemed “cool”.  So when we suggested to him that we would like to talk to our doctor about getting one for him he was thrilled.  At our next doctor’s appointment we asked about using a pump and Dr C agreed that now would be a good time to make the switch.  But before we could do that she gave us a checklist of things we needed to do in preparation. 

For those of you unfamiliar with insulin pumps, here is a quick description of what it does.  I am stealing most of this description from the Medtronic website (  Insulin pump therapy is a method for providing insulin to people (or beautiful, courageous small kids) with diabetes without the need for multiple daily injections.  Patients wear an insulin pump throughout the day (all day and all night).  Insulin is delivered at any typical injection site (stomach, thigh or butt if your Ben because he has no fat anywhere else) through a tube and a small needle.  (This injection site needs to be moved every few days.)  Patients specify an amount of background insulin to be delivered over a 24 hour period (basal rate) to keep glucose levels stable.  After meals, patients then issue a bolus dose of insulin to account for the amount of carbohydrates eaten.

Now to be clear, here is a quick description of what the pump does NOT do.  It does NOT check your blood sugar.  You must still prick and check your blood sugar a minimum of 4 times a day.  (Ben averages around 10 times a day.)  The pump does NOT automatically decide how much insulin to give you.  There are approximately 1 gazillion settings you need to enter into the pump. (That’s not an exaggeration.)  You need to decide how much basal is needed at pretty much every hour of the day.  When it’s time to eat, the pump does NOT decide how much insulin to give you automatically.  You still need to check your blood sugar, enter that in the pump, count carbs, enter that in the pump, and then a bolus dose can be given.

Even though, the pump is not the solution to all T1 problems, it does (most importantly for Ben) eliminate the need to take multiple daily injections!  And Ben was thrilled at the idea of dumping all those syringes.  So our first step for Ben to become a “pumper” was to meet with our nurse educator, Nurse G, and decide which pump we wanted to use.  We reviewed our pump options, Medtronic Minimed, Animas Ping, and the Omnipod.  Nurse G explained that one pump could do this … the other that … and another this.  At least that is what it sounded like to me.  It seemed impossible to decide.  So we decided to leave it up to Ben, which one was he willing to wear.  Nurse G suggested that Ben try wearing the pumps (without any insulin) over the weekend.  She also suggested that Jeff and I wear one too so we could understand how they felt and help Ben make his decision.  I had already planned to run the NH Reach the Beach Relay that weekend with some friends from town.  Since I really had no business even attempting to run this relay and would most likely be in excruciating pain from running 15 miles in two days, we decided I should skip the pump trial run and let Jeff and Ben take on this challenge.  I do not remember exactly why, but we decided to give the Minimed and the Omnipod a weekend try.

I remember this day very clearly, and I remember how brave both Ben and Jeff were.  They both inserted the needles, one in their stomachs for the Minimed and one in their upper arms for the Omnipod.  Ben quickly (before we even left Nurse G’s office that day) decided he did not like the Omnipod.  The pump itself was a little too big for his little seven year old arm and he found it very uncomfortable.  Nurse G suggested he still give it a try over the weekend, which he bravely agreed to do.  But in the end, Ben did not change his mind.  His pump of choice was the Minimed.

With that decision made it was time to start the insurance company paperwork.  Ben’s new pump was delivered in December.  Along with the pump, Medtronic sent a DVD explaining how to use it and all its features.  Our family sat down in the living room watched the DVD and took turns playing with the pump and pushing all its buttons.  The following day a Medtronic rep came by the house and re-explained everything we had learned the night before on the DVD.

Next up was scheduling our “saline start” with our Nurse Educator, Nurse G.  Because it was now December and the holidays were getting in the way, we scheduled our saline start appointment for the beginning of January.  At this appointment we learned how to properly fill the pump with saline (soon to be insulin).  And we worked out what we wanted the basal and bolus settings to be.  Ben wore the pump for a full week with just saline.  We had to change the set ourselves at home.  After our week trial run we went back to see Nurse G.  She decided we were ready for the next big step and we loaded the pump with real-live insulin!  We were all very excited but very, very nervous all at the same time. 

On the way home from the hospital we stopped at Dunkin Donuts and we all had a donut.  We counted the carbs and we entered them in the pump and we watched it click away and give Ben his insulin.  No syringes required!

We thought we had accomplished something … but we were so, so, so from being done.  When we left Nurse G’s office that day she gave us a spreadsheet that we had to fill out every day and at the end of the week we had to email it to her.  Here is an example of one day’s worth of numbers.

Based on these numbers Nurse G would tell us what changes we should make to the pump settings.  This process went on for a few weeks. Whenever we changed a number it was always done in very small increments.  Any dramatic changes would be too risky.  It was a very time consuming and frustrating process.  But in the end it was also an educational process.  After tracking Ben’s numbers and emailing them off to Nurse G, soon I was able to predict what change Nurse G was going to suggest.  I learned to spot the trends that she was looking for.  And learned what adjustments would fix those trends.

At our next doctor’s appointment a couple months later, Ben’s A1C was checked (it was 8.2). The A1C is a blood test that reflects your average blood sugar for the past three months.  Specifically, it measures what percentage of your hemoglobin is coated with sugar.  Dr C explained that typically your A1C goes up during the first months of using a pump as you work out what all your pump settings should be.  Dr C thought Ben’s A1C of 8.2 was really good and she deemed our transition to the pump a success.  She suggested that at our next appointment in three months we would revisit all of his settings.

Now, I was happy with this news, but at the same time I was unsatisfied.  8.2 is not an ideal A1C.  Ultimately, we wanted to be down closer to the 6s.  But Dr C told us to wait and I figured that is what we needed to do.  As the weeks went on I continued to chart Ben’s numbers and I was able to identify consistent times during the day that his numbers were too high.  I wanted to make adjustments to his pump settings but was unsure of myself.  Plus Dr C said to wait.  I struggled.  I hate to see Ben have high numbers!  Then slowly, slowly I started to realize that Dr C was not the one responsible for Ben’s health it was me (and Jeff)!  I just had my first T1 mom Aha! Moment.  

Ben’s diabetes was our problem not Dr C’s problem!  Our doctor and nurse educator’s responsibilities are to guide and teach us.  (Suppose that is why they call our nurse a Diabetes Nurse Educator)  In the end, Ben is our son and his health is our responsibility.  I had been working under the juvenile assumption that on October 26th 2009 when I decided I should take Ben to see the pediatrician I had done my best mom work.  But that was far from true!  When we got the diagnosis I had started to pretty much do whatever the doctors and nurses told us to do.  I had naively assumed that it was now their job to fix Ben.  I had mentally given them all the control.  I suppose during those first months that may have been appropriate since I was so scared and overwhelmed.  But now it was time for me to take that control back!

With my new found super T1 mom power, I meticulously charted Ben’s numbers over the next few days (I even color coded them) and emailed Nurse G with my suggested pump adjustments.  Nurse G agreed.  I made the adjustments.  And within a day we started to see better numbers. 

In the fall of 2010 when we first asked Dr C about using a pump, we had taken our first baby step to becoming responsible and grown up T1 parents.  We learned a lot during those transition months working through Dr C’s checklist.  In the end, Ben became a pumper! And I finally grew up and became a fully empowered T1 Mom!

Friday, June 8, 2012


Being a D-mom you learn to live with fear.  It’s like a drippy faucet, every drip is that quick pang of fear you feel during the day.

Drip …

In the morning when I wake Ben to get ready for school and he doesn’t move … Oh God, did he have a life ending low last night?  Then I shake him and he slaps me to go away … Ah, he is ok.

Drip …

While I am in a meeting at work and my phone starts to vibrate in my pocket, I see the call is from the school nurse … Oh God, is Ben dangerously low? … I answer the phone and Ben is low before lunch so we need to decide how many glucose tabs he should have before the nurse lets him leave her office.

Drip …

After school Ben is playing knee hockey in the basement with his brothers, he comes upstairs crying and angry about some hockey injustice … Oh God, is he crashing from all that exercise? … I try to calm him down while checking his blood sugar.  No, his blood sugar is good; he is just being poor sport!

As a D-mom you are faced with these fears constantly, but you learn how to pause, assess the situation, and then correct it.  With time I have become better at handling these daily challenges and then quickly move on.  The drippy faucet isn’t actually breaking anything it’s more just an annoyance.

But then occasionally at times, it starts to feel like someone turned the faucet on and then didn’t shut it off all the way.  The faucet is no longer dripping it’s turned into a steadier trickle.

This trickle started for me last weekend, when I read a post on Facebook.  Someone posted a link to an article about JDRF.  (  The article stated that 1 out of 20 Type 1 diabetics die from hypoglycemia.  Good God that is 5%!  That may not sound like an alarming percentage except that your chances of being diagnosed with T1 in the first place are only 1 out of 100, or .01%.  So the odds already are not working in our favor.  Ugh! 

Later in the week I read a blog written by a young woman who has lived most of her life with T1, titled “What they don’t want to know.” ( In it she describes some of the more unpleasant complications she has suffered because of T1, which include: diabetic mastopathy, yeast infections, and diabetic diarrhea.  The blog made me realize that there were so many more complications that I was not aware of.  I won’t explain these in detail, but do note, the last one ends with diarrhea!  I have mostly worried about heart disease, blindness and losing toes.  Apparently this was far from a complete list!  Most of my daily fears focus on low blood sugars.  This blog was a reminder about how I can not forget about the affects of high blood sugars.  Ugh!

Then Wednesday night, Ben had a baseball game.  We check Ben’s blood sugar before the game and then again after the 4th inning.  The other parents in the stands have witnessed this ritual this all season.  Luckily we have avoided any dramatic lows.  This game was a playoff game which unfortunately, Ben’s team lost.  It was a close game and after there were many sad faces.  To cheer up the kids the coaches invited the kids to the local ice cream stand for an end of year celebration.  While I was watching the kids eat their ice cream and play “red light green light” in the parking lot one of Ben’s teammate’s grandparents approached me and starting asking some questions about Ben’s diabetes.  We chatted for a few minutes and then she tells me that her sister had Type 1 diabetes and died when she was 42.  She then goes on to tell me how she suffered horrible complications.  She told me some story about her having a surgery where she had to move veins around.  At this point, I was no longer following what she was saying.  I was just watching Ben run around the parking lot laughing and playing with his friends.

The water from the faucet was no longer a trickle; this grandmother had just fully turned on both the hot and cold water!

I feel a wave of fear overtake me!  When I start to feel this way it becomes difficult for me to move on.  All my super D-mom coping skills have disappeared!

On Thursday, I still felt that pit of fear in my belly.  I tell myself (I do a lot of chatting in my head) that I need to turn this emotion into motion and let it all go.  I need to unclog that drain.  So I decide to go for a run.

While running, I think of the grandmother.  I slowly realize she wasn’t trying to scare the crap out of me!  I think she was just telling me the story about her sister that she loved and lost because she was sad.  She was just looking for some empathy.  So I convince myself there is no reason to believe that Ben will suffer a similar fate.  He fortunately has access to more advanced technologies and insulin.  He isn’t going to become one of the 5% who die from hypoglycemia.  Not under my watch!  He isn’t going to suffer from too many horrible complications.  We are taking good care of him and teaching him how to take care of himself.  I don’t know if this is all true, but it’s enough to help me move on.  By the end of my run, the pit in my stomach is gone.

I have regained my super D-mom coping skills! 

I have managed to shut that faucet off! 

And now today as I type up this story my cell phone just started vibrating … it’s the school nurse … but I am ok … today the faucet is just dripping.

 Drip … Drip … Drip …

Friday, June 1, 2012

Team Ben and the Cohasset Triathlon

New Year’s Eve 2007 (two years before Ben’s dx date) I made the very popular New Year’s resolution to get in shape.  My sister convinced me to train for a triathlon.  The hope was that if I set goal I would be able to keep my resolution.  So my sister and I started our triathlon training, which included swimming laps at the local pool, running a 5k and buying a bike.  In July of 2007, in a very unimpressive time, I completed my first triathlon.  Since then every year I have signed up for a triathlon in the hope that I would continue to train and stay in shape. 

After Ben was diagnosed in 2009 a friend suggested we sign up for the 2010 Cohasset Triathlon because it was associated with JDRF as its fundraising partner.  So that is what we did along with Jeff, my sister, my brother-in-law, and several friends.  We named our fundraising team “Team Ben”.  Jeff took the fundraising very seriously and started sending out emails early.  By the day of the race our team had successfully raised close to $12,000.  And, yes, I completed yet another triathlon!  With that success, we decided to sign up for the 2011 Cohasset Triathlon.  Team Ben increased from 8 team members to 17.  And we set another $15,000 fundraising goal.

Unfortunately, since Ben’s diagnosis my training had dwindled down to almost nothing.  By the summer of 2011 I was completely out of shape!  Not unlike many D-moms I was overwhelmed with the amount of time and worry it took to manage Ben’s diabetes.  I had slowly let his diabetes over take my life.  Between work, managing the house, preparing well carb calculated meals, tracking Ben’s glucose numbers, and getting all three boys to their sporting events there seemed little time left in the day to do anything but sleep (until of course the 3am alarm wakes us to check Ben).

The Saturday before the triathlon we drove to Cohasset to register.  We meet many of our Team Ben members there.  I walked through the registration line with my sister.  At the end of the line there was a schedule of the age group waves posted.  When I saw that my wave, women 45-50, was the last wave before the relay teams, I gasped and laughed.  I told my sister, “I will most certainly be the last person to cross the finish the line!”  She tried to encourage me and suggest otherwise.  Even when I was “in shape” my previous triathlon finish times were always in the bottom 20%.  I felt horribly unprepared and now I was facing the prospect of being last.  Ugh!  

Race day we woke up early along with the kids and our sitter Lauren (who is also has T1) and headed to Cohasset.  I kept reminding myself I can do this and to not worry about the times.  We first start with the swim which I completed in a respectable time (definitely not the last one out of the water).  Next leg is the bike.  I hate the bike!  I spend this entire leg just trying to stay alive.  The bumpy roads, traffic and other cyclist terrify me.  Since I was tired from the swim I coasted (a lot!) and mostly watched the other cyclists fly past me quickly losing any lead I may have had after the swim. By the time I started the last leg, the run, it was noon and it was hot!  While I was running I must have been visibly struggling because a woman who was heading back to her car (wearing flip flops) started running along side me.  She was encouraging me to keep running.  Eventually she left me for the parking lot and I was on my own again.

By the time I reached the 2 mile mark there were few other runners in sight.  I was chugging along in what felt like slow motion when I heard a rumbling sound.  Though it took almost all the energy I had left I turned around and saw a fire truck!  It was driving at about 2 miles an hour following me.  Oh God!  I was last!  But I kept running and fighting the urge to just stop and walk.  Next thing I knew there is a cop on a motorbike riding right along next to me!  He started chatting with me encouraging me, telling me I am doing a great job.  After a few minutes of this I turned and gave him the evil eye!  He then turned to me and asked if he was bothering me.  I replied, “Yes!  Please go away.”  He slowly fell behind me along with the fire truck.

Now comes the mental game.  I try to convince all the voices in my head that I am not a total loser, which is tough since those voices are so mean!  I want to start walking … but I start reminding myself, I can’t quit because what will I be teaching the kids?  I can’t give up just because it has gotten really, really hard.  Ben will face much tougher challenges in his life and he can never ever give up.  So I turned this into a chant.  And with ever painful step I chanted in my head,

You can’t quit because Ben can’t quit …
You can’t quit because Ben can’t quit …
You can’t quit because Ben can’t quit

Finally, I hear the crowd and cross the finish line.  Team Ben was there to give me high fives!  Oh God, that was just the worst.

After the race Team Ben met back at our house for pizza and beer.  While we were hanging out my sister decided she wanted to check the race results which get immediately posted to the internet.  I grumbled but she suggested that even though I was the last to cross the finish line that did not mean I had the slowest race time.  So we looked.  We scrolled down, down, down the list and found my name.  And indeed I didn’t have the slowest race time.  I finished 768 out of 773.  Then I laughed and said “Hey!  I beat a man, Dick Hoyt, in the 70+ category.”  Then my sister fell off her chair laughing!  My friend, Sarah, then asked, “Do you realize who Dick Hoyt is?”  Slowly, I did realize.  Dick Hoyt is a local legend.  He has run many Boston Marathons pushing his physically disabled son in a wheel chair.  They have run thousands of races together.  His son is now in his 40s and Dick Hoyt in his 70s.  He just completed the Cohasset triathlon swimming and pulling his adult son in a raft, then biking and running with him and it took him only 3 minutes longer than it took me to complete it all by myself.

That was certainly not something to brag about … but in the end maybe Dick Hoyt and I had more in common then our times and rankings.  We love our babies.  He ran the triathlon because he loves his son!  And I had just done the same thing!  Halloween 2009, when Ben was first diagnosed, I had made a promise to Ben and myself that I would do whatever I could to help find a cure for T1 diabetes.  I hope that I can have the same level of tireless dedication that Dick Hoyt has demonstrated towards his son. 

Team Ben is running the Cohasset Triathlon again.  This year we have 27 members and have again set our fundraising goal for $15,000.  This year I am not going to be last because I am only doing the swim leg of a relay team with includes my oldest son Garren and my brother-in-law.  (Plus, I have actually trained this year!)

Dick Hoyt and his son are also racing again this year. There will be a lot of love in Cohasset this June.  And if winners were ranked by love I am sure Dick Hoyt would be in first place and I am certain my name would be right next to his again!

Just in case you are feeling inspired here is a link to our fundraising page: