Tuesday, May 17, 2011

It Almost Makes It All Worth It

I recently exchanged emails with one of my favorite docs and after lamenting my woes to him, he shared the following with me:

BTW, you know that when I am talking to trainees about family interactions, I tell them about your story and how important it is to communicate on a patient and parent level - literally (sitting down or kneeling, not towering over someone). So not only have you saved Jack, and likely so many others with your inspirational story, you have hopefully created a generation of physicians who, at least in part, have learned how to listen. I will take that lesson with me always, and always teach it.*

This was something I really needed to hear right now and something that I will always carry with me.  When I find myself in the lows of this journey, it helps to know that Jack and I - and a physician who truly cares, are making a tangible difference in the way new physicians are being taught to communicate with families. Even though logically I know that life is a crap shoot and life is random - deep down, we all desperately want to believe that when we suffer, there must be a reason for it; we want to believe that we were "chosen" for a purpose.  If I have to find a purpose for this journey, I think I found it in the words shared above.  Who knew that this paragraph taken from my "Dear Future Physician" letter would become a lesson for new physicians:

Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me.  What will always stay with me was this physician’s simple act of kneeling down so that he was eye level with me, rather than looking down on me, when he spoke.  To most, this may seem like a meaningless, trivial gesture.  On the contrary, it is indicative of the special person this physician is.  He is unassuming, he is respectful and he is kind.  He is a physician who exemplifies what it means to practice medicine from the heart.  

All because one physician was caring enough to listen to what one parent had to say, was humble enough to acknowledge the validity of what was said, and is willing to share the lesson with the physicians who come under his training.  Knowing that Jack and I are making a real difference almost makes this journey worth it.  Almost.


(*this physician is the Director of Critical Care Medicine at one of the top ten Children's Hospital in the country, so he trains a significant number of physicians - very cool!)


worthy said...

I remember you commenting about this doctor before. I wish all doctors would do this. I sometimes find myself standing up so i can make eye contact with the drs, but it would be nice if they came down to my level. what a wonderful example

Anonymous said...

Love the post and love that you are still in contact with the doctor. I would love to talk to you about the theological aspect of the SN journey--not enough space here--but know that you are not alone.

I hope Jack is enjoying good health right now. I think about him all the time.

CS said...

I think it's so great you have a doctor like this one in your life. You both obviously respect each other and that's hard to find in the parent-doctor relationship. And I think the legacy of Jack and Ann is a valuable lesson for new doctors. I mean, who couldn't learn from an awesome person such as you.

Jenna said...

HI Jack
My name is Jenna and I came across your site. u are a brave courageous fighter and an Inspirational Hero.
I was born with a rare life threatening disease.

Catherine said...

Hi Ann,

It's great to find your blog :) I'm 20 and have merosin-positive congenital muscular dystrophy. I definitely agree with the doctor-patient relationship - my opinion is that they are there to explain the options and then I pick which one is best for me; although they know all the medical stuff, I know what it's like to live with a disability so we definitely need to work together! I'm very lucky at the moment to have amazing doctors, but there's far too many out there who see themselves as gods!

I hope Jack is doing well :)