Friday, February 24, 2012

My role model...

When you think of a person in your life that you look up to you probably think of a parent or maybe an aunt of uncle or maybe even someone in the public eye that has inspired or motivated you in some way.  In my life I never thought much about a role model for myself.  I suppose that I could mention my father who was a hardworking and quiet man with a very dry sense of humor, but he died when I was just 20 years old and I never got a chance to bond with him as an adult.  I also could look to my father-in-law who was a big part of my life as an adult and who was definately someone that you coud look up to.

But, if I am being honest with myself there is one person that I do look up to and it isn't who you might think.  The person that I look up to is the whole reason I am running in the marathon and doing this blog; my oldest son Max.  Why do I look up to him?  Well, it isn't because he constantly talks back to my wife and I and it certainly isn't because he complains about e v e r y t h i n g from what we are eating to school to homework to bedtime to getting up in the morning to going to bed at night to having to comb his hair to not getting to ride shotgun in the car to what we are watching on TV to what we have for snacks to having to put his clothes away to having to clean his room to having to wash his hands to just being tired.  I swear if he isn't complaining about something (or whatching japanamation on TV) then I'm afraid he's sick.  Oh wait...he complains about that too. 

No, I don't look up to him because of any of that.  I look up to him because I know how impossibly difficult it must be to live in his skin and he does this without complaint.  I think of how hard it is for him to control himself and focus at school and still come home with A's and B's.  I look up to him because he does what he wants without regard for how it may make him look to other kids his age.   He will go to a dance by himself without even bothering to ask his friends if they are going.(Something that my wife and I agreed that we would never have dreamed of doing at his age)  He does not give a second thought to taking off his shirt to jump in the pool even though his chest is covered with small tumors and large cafe-au-lait spots.

I look up to him because no matter wht the cicumstances he knows what he wants and he is not afraid to ask for it.   I look up to him because he is an expert at adapting.  He can't write anything by hand so that it can be read but instead, he can type on a computer faster than most adults. 

I look up to him because in his short life so far he has had adenoid surgery, knee surgery and brain surgery and has been a better patient than anyone.  He has had to suffer through countless MRI's and medical exams.  He has had more blood drawn than a vampire victim and he has spent more nights in a hospital than I care to think about.  When he was lying in his hospital bed after his brain surgery and our hearts were being torn apart by the vision of him with the bandage covering the hole that was now in his head, it made me so proud that he didn't bitch and moan about how he felt, he just wanted to play on the ICU's video game system.  Oh, and get something to eat from McDonalds.

That is why he is the person that I look up to.  His life will not be easy, but knowing Max he will live it his way and to the fullest.  This is why I am writing this blog and running in the marathon and raising money for NF.  I want Max to have every chance possible to reach his fullest potential.  I would love to be able to pay back Max for being the awsome influnce that he has been in my life by helping to find a cure for NF.    But I can't do it alone.  I need you to donate to NF Inc NE in suport of my Boston Marathon run.  They do such great work and I know that they are trying their best to help find a cure.  But it goes beyond just that.  They have been instrumental in our lives in giving us advice, compassion, a shoulder to cry on and access to others that know what we are going through.  I know that as Max gets older and starts to make his own way in life, it will be a great comfort to him to have those same people available to him whenever life tries to get him down.

I know that there are plenty of great charities and causes out there but please give whatever you can.  It WILL make a difference in Max's life as well as the lives of thousands of others that look to NF inc for help.
You can donate by clicking on the link to the right or make a check out to NF Inc NE and send it directly to them.  Or you can send it to me and I will make sure it gets to where it needs to go.


Til next time...

No comments:

Post a Comment