Saturday, October 6, 2012

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 1st 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 4th 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 4th 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.

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