Thursday, May 30, 2013

No?

This afternoon I watched an interview with Dick Hoyt and his son, Rick.  This father and son have run marathons and triathlons together for over 35 years.  Which sounds impressive enough, but what makes their story even more impressive is that Rick has cerebral palsy.  They told a moving story about a father's love. The interview ended with the son speaking through a computer and telling the audience to never give up hope because you can do anything you want to do.

Since Ben was diagnosed almost 4 years ago we have heard this advice often (like really often).  And so far we have never told Ben he couldn't do anything because of his diabetes.  There have been moments when I have thought about it.  There have been times when it would have just been simpler to say “No”, but my heart has never allowed me to take the easy way out.

But today when I heard that advice again my heart hurt.  Because today it became clear that maybe sometimes it is just not true.  Sometimes there really are things that Ben just cannot do.  Today Jeff and I are faced with the fact we are going to have to tell Ben “No”.  Not and ordinary “No”.  Not a “No, you cannot stay up until midnight.” But a “No you cannot go to the summer camp you have had your heart set on for 4 years because you have Type 1 diabetes.”

Both Jeff and I work full time so the boys have spent their summers attending day camps.  Ben has attended all the same camps as his brothers.  They have split their summer weeks between a sports camp and a traditional day camp.  Both of these camps have a nurse on staff that has helped take care of Ben.  Now the traditional camp offers different activities for the older kids and one of the options is what they call day trippers.  The day trippers week is a week filled with field trips.  One day they go to the beach, another day to an amusement park and another into Boston for a tour of Fenway Park.  This is his older brothers’ favorite week and Ben has anxiously been waiting to be old enough to go with them.  This year Ben finally is.

Jeff met with the camp director this week to discuss how we can help Ben be able to join his brothers on day trippers.  Sadly, the conversation ended with a simple Ben cannot go.  The camp does not provide a nurse for this trip and without one they will not allow him to go.  Ugh ... Sigh

Then this evening, after I was done with work, I raced to pick up Ben's brothers and get them to their baseball games.  First I dropped off Cole.  But before I could drop off Garren we had to stop for gas.  We stopped at the full service gas station (of course) and while the gas attendant pumped the gas we sat quietly in the car.  All I could think about was, “How can we tell Ben about camp?”  Soon Garren interrupted the silence and asked, "Why are you so sad." First I swore him to secrecy and then explained Ben was not going to be able to go on day trippers with him this summer.  He then asked, "Why?" I replied with the simple answer, "Because he has diabetes and there will be no one on the trip to help him." Garren looked puzzled and ask, “You know last year we had a counselor on day trippers that had Type 1 diabetes.  Maybe she could help Ben?”


A spark of hope! Maybe (just maybe) this story doesn’t have to end with a “No” …

3 comments:

  1. Would one of your sons be on the same trip? Could he be the back up to help if something went wrong? I don't know how old your son is, but I was 12 and diabetic and went to girl scout camp where I was the only diabetic and it went fine. Also went to volleyball camp and same situation. I hope there is a solution to this.

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  2. Ben is 10 and he is very smart about his diabetes but he still lets us drive all his diabetes care ... So I think he does need someone to keep an eye on him ... But we haven't give up all hope ... We are working a couple more angles .... Fingers crossed!

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  3. D -
    Don't give up hope and continue to work all the angles - And I'm keeping my fingers crossed!!
    And maybe if you feel comfortable, this might be a good time for you to start working with Ben so he can begin to participate a little bit more in his diabetes care. Baby steps i.e., little ripples, turn into huge waves.
    Good luck and please keep us posted!!!

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