What it means to be a T1 family

During the summer of 2010 Ben was still in his honeymoon.  He was still requiring very little insulin and his daily injections were down to just two shots a day.  Even though I secretly hoped that Ben had experienced a diabetic miracle and was actually cured, my logical brain new better.  I understood that his honeymoon would likely come to a quick dramatic end and I wanted to be well prepared this time.  I became obsessed with learning as much as I could about Type 1, how the pancreas worked, and how I could best support Ben.  I filled my Amazon.com shopping cart with every book that had pancreas in the title.  I also searched the Internet for blogs and support groups.  I eventually stumbled upon the Children With Diabetes (CWD) Web site.

CWD is a Web site that was started by a father of a Type 1 child who was searching for support in the same way I was.  Over the years the Web site grew into a substantial support group.  The support group then started an annual conference.  The annual conference turned into multiple conferences and then went international.  Apparently, I was not the only confused, desperate and isolated parent, there seemed to be a whole wide world of us.  I found there was a conference in Orlando over the 4^th of July week.  With a lot of whining (which I am expert at) I was able to convince Jeff that we should take the whole family to the conference.  This was an expensive proposition but my arguments had been convincing enough that Jeff agreed we would dig and find the money.

Jeff works at a private boy’s school.  The school has a special fund set aside that they use to award summer travel grants to the teachers and faculty.  Jeff submitted and application for a travel grant to fund our trip to the CWD conference, and it was approved!  (Thank you, Fenn, for your generosity and support.)  The grant was a huge gift.  We had plenty to worry about, so it was a pleasant relief to at least not worry about the cost of the trip.

We registered for the CWD conference in April.  As part of the registration process we were added to a CWD mailgroup.  Parents posted all sorts of questions to the group.  People asked about how to handle airport security; were there refrigerators in the rooms to store insulin; and tons of questions about how to handle the heat and sun at the amusement parks.  The questions about airport security and the flights I understood.  I had already worried about that!  The questions about storing insulin I understood.  I had already worried about that too!  But I had not previously been concerned about sun and heat.  I had not read anything about this in all my Amazon.com books.  I had not seen any references to that on the Internet either.  But I kept reading the same question.  There were lengthy discussions about how to get guest-assistance passes at the theme parks.  These passes allow the guests to avoid standing in long hot lines along with other accommodations.  Because I am such an (admittedly arrogant) skeptic I was convinced these parents were being high-maintenance and over-protective.  I was beginning to question whether this conference was going to be a good thing for our family.  But I had whined so much about how we needed to go I was not now willing to tell Jeff maybe I was wrong and I had changed my mind.

After school was done in June, we packed our suitcases, extra bags of food, and a backpack full of vials of insulin, syringes, glucose meter (pricker), test strips and lancets (including back ups of our back ups).  Luckily, we had no troubles getting through security.  Our flight was uneventful and we made it to our hotel in Orlando without any of the drama I had worried about back in November when I cancelled our Thanksgiving trip.

The conference started the following day with a motivational speech by Jay Hewitt (an Ironman triathlete with Type 1 diabetes.)  The boys attended groups designed specifically for their ages, including Ben along with his pricker.  We were assured that Ben would be well taken care of and we could attend our sessions worry free.  So Jeff and I left the boys (though not completely worry free) and attended as many sessions as we could.  We split up in the hope that we could maximize the information we could cover.  Jeff and I were overwhelmed.  I went from a session on pump technology to a session about exercise physiology to a session about the emotional development of a child with Type 1.

At noon we all meet up again for lunch.  CWD presented lunch buffet style.  Everything was labeled with its serving size and carb counts.  We did not have to spend 20 minutes before we could eat shifting through books and reading nutrition labels trying to figure out how many carbs Ben was going to eat.  We (almost) felt normal again.  Once we entered the dining hall to sit and eat, we saw hundreds of people, many of which were pricking their fingers, talking about carb counts, taking insulin injects or entering numbers into pumps.  Now we really felt normal.

We spent three days at the hotel attending the conference.  Our brains were overloaded.  We had learned a lot and we had been inspired, but now it was time for some family fun.  The boys decided they wanted to go to Universal Studios.  Garren and Cole are roller coaster fanatics.  And Ben was equally excited to visit the new Harry Potter World.

When we arrived at the park, Garren, Cole and I immediately headed toward the Hollywood Rip Ride Rocket.  Jeff and Ben had no interest in riding any roller coasters, so they waited outside for us.  I soon discovered that Jeff and Ben had made the wise choice.  I have always loved roller coasters but I had not ridden on one of the new super-fast roller coasters.  I was apprehensive, but at the time I felt that a parent should accompany the boys.  I quickly regretted that decision as my brain was knocked around my skull at a very high speed.  I am quite certain I got a concussion on that roller coaster!  After the ride was over and I was able to think again, I decided the boys were on their own for the rest of the day.  I figured if anything horrible were to happen to the boys on a roller coaster  there would be no way for me to protect them while I was being whipped around at an hypersonic rate of speed.  My plan for the rest of the day was to stand outside the ride and pray for the boys’ safety.

After the ride we meet up with Jeff and Ben again and we were all smiles of excitement (I was just happy I had survived), but we were not greeted with the same enthusiasm.  I believe Jeff and Ben waited no more then 30 minutes for us. The line went fairly quickly because it was still early in the day.   Jeff was hot and bored from the wait, but Ben seemed even more grumpy then Jeff.  I sensed Ben was off.  So before we walked to the next ride we stopped to check Ben’s blood sugar.  Ben was very, very angry now and he did not want us to touch him.  Jeff had to hold him while I pricked his finger.  The meter did its slow count down … 5, 4, 3, 2, 1 … 23!  Oh God!  We had never seen a number that low.  I was certain I was about to throw up.  I am not sure if the nausea was from the head-banging rollercoaster ride or from the shock of such a low glucose reading! We quickly gave Ben some new glucose tabs we had picked up at the conference.  And we waited.  Soon Ben was no longer angry but had become weepy and sad.  I held him and we checked him again … 5, 4, 3, 2, 1 … 30!  Oh God!   Here we go again.  It took an hour to get Ben’s numbers back in line.  During that time, both Jeff and I were quietly panicking.  Garren and Cole were equally concerned.  But we all tried to remain as calm as possible because no one wanted to upset Ben anymore then he already was.  Once Ben’s meter finally read a number back in range, we all sighed in relief.

Jeff and I had not anticipated such a quick dramatic drop in Ben’s blood sugar.  He had eaten all his necessary carbs for breakfast.  Every episode of low blood sugar is followed by a guessing game.  Jeff suggests one possible cause, and I follow with another.  Sometimes this game ends with no answers and shrug of the shoulders.  But this time Jeff and I agreed that the cause was likely the sun and heat.  Seems the CWD parents were on to something. 

After everyone felt better we continued on with our day.  We all kept a very close eye on Ben.  It was a long hot day.  Garren and Cole rode every crazy rollercoaster they could (by themselves).  Ben attempted to walk through the new Harry Potter World, but it was so overcrowded that we ended up leaving without being able to ride a single ride.  Ben was heart broken.  By the end of the day, Ben was exhausted, disappointed and miserable.  On our way out of the park we stumbled across some arcade games.  The boys begged us for some extra money so they could play one of the games.  They convinced Ben to play too.  The game was one that you sprayed water guns on a target which pushed your horse along a track in attempt to win the horse race.  The three boys lined up, they were ready to race and we cheered them on.

(I took very few photos that day at the park, but I did take some of this race.  I have included them here.)

Garren and Cole were fighting back and forth for first place.  But as the race was ending Ben quickly caught up and won.  Ben won a pink bunny rabbit and finally he was smiling and laughing!

Later that evening, I asked Garren and Cole if they had let Ben win.  Garren and Cole both admitted they had.  I then asked if they had agreed to do that before the race.  And they both said, “No.”  I smiled.  Without a suggestion from Jeff or me and without a word spoken between them they both decided that they wanted Ben to win.  They wanted Ben to be happy.  My heart was full.  I hope when Ben reads this story he isn’t disappointed.  Instead I hope Ben realizes he won so much more then a race and a stuffed animal that day.

We learned a lot this week in Florida.  We had learned about many technical aspects about diabetes.  We learned how to travel with diabetes.  But more importantly we learned what it means to be a T1 parent.  We learned that there is NO such thing as a high-maintenance, over-protective T1 parent!  You can listen to doctors and read books but they can not tell you everything you need to know.  There are all sorts of new technologies and fast acting insulins that allow us to more precisely manage glucose levels.   But there are so many outside factors that affect your T1 child’s blood sugar; how much exercise they had the day before, how much sleep they got over night, how excited they are, how nervous they are, how much exercise they are getting today … and we can now add to the list … how hot it is outside!  Judging the potential affects of these factors become the job of mom and dad.  As a T1 parent you must always remain vigilant.  Only with time and experience can you learn what works for your T1 child.

We also learned T1 siblings have their own struggles.  They watch their sibling test their blood sugar and count carbs.  They watch their sibling suffer low and high blood sugars.  They watch their parents stress and worry.  We learned that Garren and Cole are just as scared as we are when Ben is struggling with a low.  We learned what it means to be T1 brother.  And Ben is lucky to have two of the best!

God's Timeout

One of the tough lessons we learned about Type 1 Diabetes is that is never goes to bed.  Ben’s body requires insulin 24 hours a day.  Even if you do not eat any carbs all day your body still requires a base amount of insulin.  So before bed we have to give Ben an injection of  long-acting insulin (at the time we were using NPH).  However, the amount of insulin Ben might need one day may not be the same the next.  So this bedtime injection requires a nighttime check.  Before Jeff and I go to bed we first check Ben’s current glucose level and then set the alarm for 2 a.m., so we can check him again.  If Ben is low, below 70, we need to wake him up and feed him some fast-acting carbs to bring him back up over 70, and then follow up with a few more carbs to help him make it through the rest of the night.

During the first few months of Ben’s diagnosis when Ben had a nighttime low we would have a “nighttime picnic.”  We would bring Ben into our room and give him his handful of skittles and then wait the obligatory 15 minutes to recheck his glucose level.  And I can promise that 15 minutes at 2 a.m. feels much more like 1 hour.  After our 15 min/1 hour wait we would then give Ben some goldfish and a cheese stick.  The first few times our nighttime picnics were amusing to Ben.  However, pretty quickly, when we woke Ben up he was not at all amused (nor was Jeff and I).

Since we understood these nighttime checks were never going away, what we needed was a better nighttime picnic menu.  A friend who also has a young Type 1 child suggested we use a small apple juice box for the fast-acting carb and then use a tube of yogurt as a follow up snack.  This was a brilliant suggestion!  The small straw on the juice box allows us to squirt the juice right into Ben’s mouth.  The yogurt tube works the same way.  Now when Ben has a nighttime low we just quietly tell him he needs to drink and eat, and without even opening his eyes he does.  Essentially, Ben can drink and eat both of these snacks without actually waking up.  We had successfully eliminated the nighttime picnics, one win for us!  However, we had not eliminated the 2 a.m. alarm and glucose check.  And we found ourselves battling more and more nighttime lows.  And we were getting less and less sleep.

One night Jeff walked into the bedroom after checking Ben, and I sat up in the bed and asked, “Is Ben over 70 now?”

Jeff looked at me perplexed and said, “Ben is fine.  He wasn’t low, he is 150.”

“But I just gave him a GoGurt, he was only 50.”

Jeff replied, “Dolores, you have been in bed.  I just checked Ben and he is fine.”

I was so confused.  I was certain that I had checked Ben and he was low. “No, I went downstairs to the kitchen and got Ben a GoGurt. It was strawberry.”  I couldn’t have dreamed all that because it all felt perfectly real!

Jeff insisted, “No you did not.  You have been in bed all night.”  Jeff showed me the glucose meter and it backed up his story.  Trusting Jeff, but still confused, I went back to sleep.

A few Sundays later, I was folding laundry in our bedroom and watching PBS.  I found myself watching a PBS documentary.  The filmmakers were interviewing an Iraq War veteran who was suffering from PTSD.  This veteran had been struggling since he returned home.  He was unable to keep a job and had found himself homeless.  He was explaining that since his return he was not able to sleep, when he does go to sleep he ends up reliving horrible battles from the war.  But he continues to explain that these aren’t normal dreams.  When he dreams he is unable to tell he is dreaming, the dreams feel perfectly real.  He has become so frightened of his dreams that he does everything he can to stay awake.

Oh my God!  I sat on my bed on the pile of unfolded laundry and unmatched socks.  I felt so badly for this man.  And then slowly, very slowly I began to realize why I felt so sad.   I understood exactly what he was talking about!  I understood how a dream could feel perfectly real!  How it could be impossible to tell the difference between reality and a dream!

I had read in a book about Type 1 that many parents of newly diagnosed T1 children suffer from PTSD and partial PTSD.  When I had read that, I immediately dismissed the statistic.  I certainly wouldn’t be one of those parents.  But I think God was sending me a message through PBS.  I do not think he was telling me I had PTSD, but certainly I had suffered a similar symptom.  I got the message.  But I had a problem because I did not know what to do next.  What I did not realize at the time was that God had already called his timeout.

Over the past weeks we had been struggling with more lows both day and night.  Slowly, Ben was requiring less and less insulin.  When we left the hospital in October he was receiving four injections a day.  Four months later he was requiring only one.  Ben had entered what is commonly called the honeymoon.  I prefer to call it “God’s timeout.”

After you are diagnosed with Type 1 Diabetes, and you start taking insulin, your blood sugar levels slowly return to normal.  This triggers your remaining insulin producing cells in your pancreas to work again.  Slowly your body will require less insulin while you remaining insulin production cells work as hard as they can until they are also destroyed.

This period; this honeymoon; this timeout; lasted for Ben almost a year.  I believe, God must have known we needed a break, me especially.  I needed time to breathe, to be relieved of my constant fear and time to rebuild my confidence, so that I could properly take care of Ben.  I must admit, I often prayed and hoped that Ben actually was healed or even misdiagnosed.  But I knew better.  I knew this timeout was temporary, as all timeouts are.

Jeff and I were able to slowly regroup.  I never did have another PTSD moment.  By the end of the summer of 2010 Ben was experiencing more high blood sugars.  He was requiring more insulin.  The clock was slowly ticking away, we were seeing the signs that the timeout was nearing it's end, and I could hear God cheering us on.  "It's time to get back in the game!"

An Ode to SMS Hockey

Growing up I was never much of an athlete. For a short time I was on a swim team. I eventually quit that team after spending two summers never winning any real ribbons but only the dreaded “participatory” ribbon. My younger sister was also on the same swim team and her room was filled with blue, red and yellow ribbons. My room only had orange thank-you-for-trying ribbons. Outside of these two years on the swim team, I did nothing else athletic. In high school, I came straight home, watched “General Hospital” and read books (but never the ones assigned in English class). Basically, I have always been a true couch potato.

Jeff, on the other hand, was always an athlete. He played several sports through high school and into college. Apparently, our three boys take after him. They are all handsome and athletic. (I still claim they get their smarts from me, though.) Since our oldest son, Garren, started t-ball in kindergarten our family has been non-stop sports. The boys all have slightly varied interests, but they all (including Jeff) unanimously agree that hockey is their favorite!

When Garren was in first grade he asked if he could start skating and learn to play hockey. Jeff was thrilled. Jeff had spent his youth in hockey rinks. I, on the other hand, was not so thrilled. As I already explained, I had spent my youth on the couch. All I knew about hockey I had learned from television. And what I had learned from television was that hockey parents were scary people. All the fathers were getting into fights, and all the mothers looked like they wanted to join in. Basically, I thought all hockey families were thugs. But there was an obvious flaw in my logic; Jeff had played hockey, and I had not married a thug. So I was convinced to let Garren give hockey a try. Since we made that decision seven years ago, we have spent countless hours in hockey rinks. Once Cole and Ben were old enough they followed Garren, and we had all three boys on skates. My boys are their happiest when they are in a rink, either playing a game, practicing, or just running around with their friends.

When Ben was diagnosed and we were still at the hospital in our Diabetes 101 training, one of the first things we worried about was how we were going to be able to get Ben back in his skates and on the rink. We understood so much was going to be taken away from Ben. But we also understood that one of those things could not be hockey. We needed to get him back with his teammates playing the game he loved.

Again, Jeff and I needed a plan. How were we going to keep Ben’s glucose levels from crashing during practices and games? When we left Children’s Hospital we were given cheat sheet with very basic guidelines on how to manage exercise. (After 30 minutes of exercise Ben will need 15 additional carbs depending on what his starting glucose level is.) Over the past two years we have learned to appreciate the beauty and mystery of the human body. And we have come to learn that this was in no way a complete plan. But it was enough of a plan to get us started. So with this exercise cheat sheet, Ben’s test kit and several juice boxes we decided to give hockey practice a try. We thought we had everything we needed, but what we really needed was support and encouragement. And we got that and more from our town hockey league, Sudbury Maynard and Stow (SMS) Hockey.

In 2009, Ben was playing on the Mite D team. His coach was Coach H, who also had a son on the team. Coach H immediately, and without hesitation, wanted to learn everything he needed to know to help Ben return to the team. The “without hesitation” piece was the most critical for us. Whenever I need to leave Ben in someone else’s care, you have to first explain his condition and instruct what needs to be done in an emergency.

This conversation usually starts with, “Ben has Type 1 Diabetes.”

This statement is usually followed with “Oh, my grandmother has diabetes.”

I follow with, “She likely has Type 2 Diabetes. Ben has Type 1, which is different.” I then continue with, “With Type 1 your pancreas no longer functions and you become insulin dependent ... ”

At this point, about half the time, I have now lost their attention and I will notice their eyes start to glaze over. To be clear, I am not judging anyone. Before Ben was diagnosed, I did not understand what Type 1 was. And I am certain my eyes would have glazed over too.

But if I am lucky enough to have not lost my audience, I follow up with “If Ben’s blood sugar level goes too low, anything below 70, we need to immediately give him some fast acting carbs, like sugar. It is important to do this quickly to avoid hypoglycemia and other bad things from happening ...”

Now at this point, about half the time, I will notice shock in their face. If they seem at all squeamish or uncomfortable I will decide not to leave Ben. But if I am lucky enough to have made it this far in the conversation, I will finish up my instructions. I won’t feel comfortable leaving Ben unless I know whoever I am leaving him with feels comfortable too. Honestly, I only get this far about 25% of the time. With Coach H, we got this far!

Because Coach H understood Ben’s condition and was eager and willing to work with us, Ben was able to immediately return back to hockey. We had a lot to learn together to help Ben manage his glucose levels during practice and games. Coach H and SMS Hockey provided us with a safe supportive place to do that learning. And that is what we needed most. Ben has skated three hockey seasons since his diagnosis. Every one of his coaches, Coach H, Coach M, and Coach L have all been truly loving and supportive.

Over the past two years, during all our challenges and struggles, Ben has never complained about having Type 1. He has never asked, “Why me?” And he has never said he could not do something because of the disease. One of the reasons for that is because Ben basically is awesome. (I do love my boy.) But another is because he quickly returned back to hockey and he never once considered not skating again. After Ben was diagnosed he very easily could have decided all the finger pricking and glucose checking was too much and quit hockey. If he had done that, I believe he would have a very different attitude toward his diabetes today. He easily could have become resentful and angry.

I have included here a photo of Ben and his teammates after they won a Mite hockey tournament.

These are the moments that could have been stolen from Ben. But that didn’t happen because of SMS Hockey, his great coaches and teammates. I believe SMS Hockey changed the course Ben’s life. And for that Jeff and I will forever be grateful. I was very, very wrong to have ever believed that the hockey community was full of thugs. Instead I have found that it is full of angels!