D-anniversary

This summer at the CWD conference the closing speaker was Jay Hewitt, who is a triathlete living and competing with Type 1 diabetes.  He ended his closing speech by challenging us to make T1 the best thing that has ever happened to us.  364 days a year I try my very best to live up to that challenge.  But there is 1 day a year I just can not.  And that day is here.  It’s the day I dread all year.  It’s October 26, Ben’s D-anniversary.  This is day three years ago we received the official diagnosis, Ben has Type 1 diabetes.

I am unsure why this single date on the calendar has so much power over me, but it does.  As the days tick away … Oct 23, Oct 24, Oct 25 … the pit in my stomach grows bigger and heavier.  And now today, I try to hold back the tears.

People often remind me (and I often play this game myself) that there are good things that can come from the bad.  Over the summer we were visiting family and someone suggested since Ben’s diagnosis we have grown closer as a family and we have done great work advocating and raising money for T1 research.  I politely agreed.  But what I really wanted to say was that I would give that all back (plus more) if Ben could have just one more day without the heavy burden of this disease.

Three years ago Ben lost a working pancreas and a care free life.  And as a mother my heart broke and three years later my heart is still broken.  I know this diagnosis is not mine, it is Ben's.  Ben is the one who has T1 and not me.  But as a mother it is hard to separate yourself from your child's pain. 

However, my sadness is about more then just the loss of a pancreas.  Before Ben’s diagnosis we were living the life I had always dreamed of and worked for.  As a girl I dreamed of marrying a nice loving man, Check.  I dreamed of having a challenging and rewarding career, Check.  I dreamed of owning a nice house in the suburbs, Check.  And I dreamed of having three great kids, Check.  I always believed I had some control over my life and if I worked hard and made all the right, moral decisions everything would be ok.  Then on Oct 26 2009, I learned that is just not the way life works.  I do not have the control I naively believed I had.  And without that control things can get kind of scary.

Ironically, “control” is the very word that is often used when talking about living with T1.  I am frequently asked, “Do you have Ben’s diabetes under control?”  I hate that question because we do not. (Please don't ask me ...)  I don’t have the power to control Ben’s diabetes anymore then I had the power to prevent him from getting it in the first place. It just doesn’t work that way.  

Today the tears I hold back are fueled by sorrow but also by fear.  I mourn both the loss of a pancreas and the loss of my carefree childhood dreams.  But tomorrow I will put my happy face back on, I will focus on the positive, and I will remember Jay Hewitt’s challenge.  And as long as I can remain brave, I can still make T1 the best thing that has ever happened to us.

Magic

At Ben's school each semester there is a senate election.  Each grade has two senators and they serve for half the school year.  The students who want to run need a partner, because they run in pairs, and then they have to give an election speech.  Running for the senate is very popular in the 4th grade.  Almost 3/4s of the fourth grade class runs.

Ben and his new buddy C ran and gave this speech:

Hi guys its Ben and C here running for senate.  There is one thing to do, vote for us.  Here are some awesome reasons you should vote for us.  We will have hi-chew sales for 3 packs each kid and the packs are 1 dollar per pack, and the money will go to JDRF (juvenile diabetes research foundation).  We will try to have a pizza night and play flash light tag and man hunt.  The pizza will be $1.25 per slice.  Also we will have a candy guessing contest and the bucket will have all types of candies like Sour Patch Kids, Swedish Fish, Fireballs, Starburst, Pixie Sticks, and more.  We will have sports tournaments.  Donut eating contests and drawing contests also.  Will give you swag like that, and teach you how to do push ups in midair and teach you how to use a banana phone.

Please vote for us!

The speech may seem like the silly ramblings of two 9 year old boys, but I love it!  I think it represents exactly who Ben is.  He is a boy living with what seems like very grown up problems.  He is a boy who starts his day checking his blood sugar and counting every carb he eats.  He is an advocate and a fundraiser working to help find a cure for a disease that affects millions of people across the globe.  But that is just a small part of who he is.  Even though T1 might seem as if it has completely taken over his young life, it has not!  He still loves flash light tag, candy (all kinds), and sports tournaments.

I often worry that T1 has stolen Ben's youth.  But when, I read this speech I smile knowing that there is so much magic left.  He can do push ups in midair!  And he knows how to use a banana phone!  There was also some magic in their speech, because Ben and C won!  Soon the whole grade will be eating piles of candy and talking on banana phones.  I hope the teachers are prepared for all that young boy magic.

Play Dates

When Ben was first diagnosed in 1st grade all of his play dates came to abrupt end.  Over the past few years we have been able to train a couple friends on how to take care of him and he has been able to go on a handful of play dates.  He has even had a few sleepovers with his best buddy A.  (And for that we have been very thankful.)  But for the most part the invitations for play dates stopped.

Now that Ben has started a new school he is making many new friends and the calls to arrange play dates have started again.  When Jeff and I received our first invitation to have Ben over for a play date we both looked at each other and sighed.  We both knew that we needed to let Ben go and we needed to muster up the courage to let him go.  I know that sounds simple enough, but I promise it was no easy task.  We were going to have to dig really, really deep to find that amount of courage.

Before we could let Ben go we needed Ben to agree to some basic rules.

First, if he started to feel low he needs to stop playing and check himself.  Now, I am very aware this will likely never happen.  Not because I don't expect him to go low, but because he will never stop playing long enough to ever realize that he is feeling low.  As a back up we are sure to do a quick training on hypoglycemia with the parent in charge which always ends with this basic instruction, "If Ben becomes incoherent or passes out call 911 first and then me after."

Second, if he is offered any snacks he must first check his blood sugar and then give me a call to discuss carbs counts.  Because Ben has become an expert carb counter we feel fairly confident he can handle this responsibility.

Lastly, he has to check his blood sugar every two hours.  To help remind him to check we bought Ben a watch that allows us to set multiple alarms. He has successfully used the watch alarms to remind him to visit the school nurse during the school day.

I also explained to Ben it was important to follow all these rules because we really want him to be able to go on play dates with his new friends.  For that to happen we need him to follow the rules and to take the lead with his diabetes care.  This felt like a really tough conversation to have with a 9 year old, but I think he understood.

After Jeff and I decided we could let Ben go, I suggested that it was time to get Ben a cell phone.  We had made his brothers wait until they were in the 6th grade and in the middle school before they were allowed to get cell phones.  But I argued since Ben had to communicate with us frequently while he is away we needed to break the 6th grade rule and get him a cell phone earlier.  Now, Jeff hates to break rules!  And he argued Ben could just use the home phone where ever he is.  Since that was solid logic, I let it go (sort of).

With these basic rules in place and some additional parent training Ben has already been on several play dates.  Now, to be clear, both Jeff and I were nervous every time Ben was away.  We sat near the phone waiting for his calls.  And of course, I took every opportunity to point out how nice it would be to just text Ben and check in on him.

Ben followed all his rules and his numbers were great.  Hopefully, we did not scare all the lovely parents away and Ben gets invited again.  Ben has proved he can handle the responsibility.

We had mustered up the courage and I felt like we had won (at least this small battle.)  But my winning had not stopped ... Jeff texted me this today:

A Bump in the Road

I have not written a post in awhile.  Instead of writing blog posts I have been busy writing emails and letters attempting to explain the importance of proper diabetes care to the faculty at Ben’s new school.

Ben was diagnosed in 1^st grade and he spent the next three years being cared for by the same (totally awesome) school nurse.  I always appreciated how great she was at taking care of both Ben and me.  But what I did take for granted is that this relationship took three years to build.  We showed up at the school nurse’s office three years ago loaded with paperwork, diabetes supplies and worry.  And she thoughtfully and patiently guided all of us (Ben, Jeff and me) through Ben’s transition back to school.

This September Ben made another transition to a new school and a new school nurse.  And this transition may have been my toughest challenge yet.

We made several mistakes along the way.  First, we only meet with the new school nurse once just a week before school started.  Because Jeff works at the school we knew that there already was a student at the school with T1, so we mistakenly assumed the staff was well informed about T1 and we could avoid having to give any T1 training.  We also assumed the school nurse already had a care plan in place that we could follow as well.

Now I have read close to a thousand times that everyone’s diabetes is different.  So I should not have been so surprised the care plan in place for the other student was very different then the care plan we wanted for Ben.  Once we realized this we hoped just explaining what changes we wanted for Ben would be enough.  But it was not that simple.

I arranged a meeting with his homeroom teacher and we reviewed the basics of his care plan.  His teacher was attentive and thoughtful and I left that meeting feeling confident Ben would be safe while he was there.  But this year Ben no longer has just one teacher and one classroom.  He has a homeroom teacher, a math teacher, a science teacher, an art teacher, a drama teacher and several more teachers coaching sports.  That is a lot of teachers to attempt to train.  The new school year was in full swing.  The staff was busy helping the boys settle into their new school.  Ideally, we should have spoken to all of them before school started.  But we did not know Ben’s schedule before the first day of school.  And again, we assumed everyone already knew what to do.

In the hope of reaching all of Ben’s teachers quickly and efficiently I started my letter writing campaign.  I attempted to explain why Ben’s diabetes care is our number 1 priority.  I also sent the staff worksheets explaining the basics of T1 care and the risks of high and low blood sugars.  I received a couple quick replies and thank yous.  But I was still worried that they did not “get it”.

One of the toughest things about living with T1 is the constant need to explain the disease and why it is so important to always stay vigilant.  It is already exhausting trying to manage T1 every day (and night).  But on top of that, constantly having to explain that Type 1 diabetes is not the same disease your grandmother had can be emotionally exhausting.  And the very hardest part is trying to explain that all the risks we fear are REAL.  Jeff and I have helped Ben through several scary lows.  They are not some imagined or unlikely possibility.  What I hoped that the school staff understood is that Jeff and I are NOT crazy, overprotective parents.  We are parents that have held our near-unconscious son in our arms praying that his blood sugar comes back up in time.  We are parents that meticulously check our son’s blood sugar and record these numbers in the hope we can keep them in a healthy range and we can avoid too many highs and lows.

Every day Ben went to school I worried.  Every day I questioned whether it was even safe to send Ben.  But Jeff was nearby and Ben has always been so good about taking care of himself.  I had faith Ben would be able to do the right thing if needed. (He had already proved to me he could on his very first day of school. )  Slowly, very slowly, we got the school nurse and the staff to understand how we needed Ben cared for.  It took weeks.  It took patience.  It took determination.  And it took some tears (a lot of tears).  Today, I do believe the school faculty “gets it”.  The new school nurse and the staff have been receptive to my letter writing campaign and have made every accommodation (and more) that I asked for.  I finally feel more confident that Ben is safe.

Ben has now completed his first month of 4^th grade and he could not be any happier.  He comes home from school excited to do his homework (no lie).  He loves the new freedom he now has.  For “Back to School Night” the boys each wrote a letter to their parents that they left on their desks.  Here is what he wrote:

 

 

Dear Mom and Dad,

Welcome to my desk. :) I'm having a BLAST!  I know a lot people who have older brothers here too.  I have really nice teachers for my classes.  It's really, really fun here!  I hope Garren and Cole are having fun too.  Thanks for bringing me here.

Love, Ben

P.S.  When I go to my classes I take the long way so I see more stuff.

I love his P.S.  It reminds me that life can be a long and winding road.  And even though you may feel like you are about to drive over a cliff, you should stop every once in awhile to enjoy the view.  Looking back over the last several weeks, and looking past all the frustration, worry and tears, I see a strong and happy 4^th grade boy who LOVES his new school.  Knowing he is truly happy makes the last month seem more like just a bump in the road.