Thursday, May 26, 2011

Graduation Video

Edited to add:

Last day of high school!  


Mary doesn't graduate until next week, but her graduation video that I put together arrived in the mail today and Mary couldn't wait until graduation to watch it.  Now that Mary has seen it, I thought I'd go ahead and share it.  Over the years, Mary has seen me put together videos for Jack, Hilary and several of her cousins and she has anxiously been waiting for her turn!  I'm a bit worn out on creating videos, but I certainly couldn't let Mary down.  So here you go for those who might be interested ....  18 years of Mary!

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!)

Sunday, May 15, 2011

Where is the Book?

As I find myself in this place called Midlife, I’ve been reading books and magazines geared towards the mature woman.  You know, books like “The Wisdom of Menopause" (ack!) and magazines like “More” (for the woman of “style and substance”).  What I’ve discovered in my reading is a recurring and predominant theme:

Midlife = Me.

This is best expressed in the following excerpt:

Midlife is when we hear the wake-up call that demands that we start honoring our own needs.  Our children are leaving home or long gone, the time for the kind of self- sacrifice demanded by raising a family is coming to an end, and we now have the opportunity to re-examine our lives.

The snag for me is the part about “our children are leaving home or long gone, the time for the kind of self-sacrifice demanded by raising a family is coming to an end”. 

It’s true that for the majority of people, their children are leaving home and they now have the time, financial resources and ability to try new things, travel to new places and enjoy the rewards of years of hard work raising a family and pursuing a career.  I see this with my own siblings, my friends and my colleagues.

But what about those of us who have children with significant medical/special needs who will never leave home or live independently?  Those of us whose children will require the care and attention of a newborn (and then some) well into adulthood?  The demands of caring for our children have not come to an end and, in my case, likely won’t come to an end until I’m in my sixties or perhaps, even later.  

Twenty years ago, children like Jack didn’t survive into their late teens and early twenties.  The technology that keeps Jack alive today didn’t exist outside a hospital.  Medically fragile children simply didn’t live long enough to become medically fragile adults.

How do I reconcile my desire to honor my own needs or take advantage of the opportunity to re-examine my life with the continuing demands of my child who still has so many needs?  Where is the book that tells those of us with medically fragile/special needs children how to navigate middle age?  More importantly, where is the book that tells us how to do this without the burden of guilt?

I’m tired of reading about how everyone else does it.  I want to know how I’m supposed to do it.

Where is the damn book?

Sunday, May 08, 2011

Mother's Day

A day of celebration 

(celebrating the other May birthdays - my dad's and my nephew's)

A day of remembrance

A day of appreciation 

(for the privilege of being a mom)

Hope your day was a good one!

Wednesday, May 04, 2011

Diary of "the" Birthday

The anticipation of the big birthday was definitely a whole lot worse than the actual day.  So, now I'm fifty.  As everyone has been telling me all along .... it's just a number.  Well, except for my sister who picked up the phone and called me today to tell me "I just can't believe you are 50!"  Me neither!

The day was perfect in every way.  It started bright and early getting Eric to school by 6:15am for his class field trip to Kartchner Caverns (two hours south of Phoenix).

(anxiously waiting to board the bus)

First phone call of the day was from my awesome friend Peggy. I was actually shocked that she remembered it was my birthday. (Peg's not so good at remembering important dates and such.)  The phone call from Peg totally made my day.

I took the day off from work and scheduled a morning at my favorite spa.

An hour and a half massage followed by a pedicure and I was in heaven! After I finished up at the spa, my husband and I dined at another one of my favorite places

Despite the fact that I was at a winery, I ordered a beer just for my friend Julie who lives in the UK and who turned 50 last week.  Julie is a dear "cyber-friend" who I'm so looking forward to meeting in person one day.

(Cheers Julie!)

After lunch (and two beers), I came home and took a two hour nap.  A sure sign that I am officially old because I am so not someone who naps! Then again, I'm not someone who is usually home on a weekday when my kids are at school or being taken care of by someone else.  Given the opportunity to nap more often, I think I could get used to it.

I ended the day at my sister's house celebrating with family and friends.  

(before we left for my sister's)

(my sister was a little short on candles :)

(here's to another 50 years!)


My day was perfect and I'm so thankful for all the people who made it special - especially my family.  

All I can say is that the years have flown by so very fast and, as cliche as it sounds, it's imperative to slow down and just BE in the MOMENT because in the blink of an eye, you'll go from 



Monday, May 02, 2011

I Have Not ...

.... dropped off the face of the earth! Good grief, in the four and a half years I've been blogging, I've never gone this long between posts.  Part of it is because I've really got nothing to blog about and the other is, I've been struggling a bit lately with a bundle of emotions involved with missing my mom, my upcoming birthday, one kid coming home from college and another getting ready to leave for college.  Lots of transition going on in life and I'm feeling rather "out of it" lately.

Hopefully, once I get past this damn birthday I'll feel better :)  Because I don't care what anyone says, 50 is OLD!  

Thank you SO much for checking in on us and for caring.  I do appreciate you all and hopefully soon I will get back into the blogging mode. Lots going on in the upcoming months with Mary's high school graduation and our upcoming trip to Ireland - so I don't/won't want for blogging material, that's for sure.

Until next time ..... thanks for hanging in there with me.