Monday, May 21, 2012

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 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 4th 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 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!

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