Tuesday, October 1, 2013

Connect To Purpose...

A rumor has been spreading around about me.  It's a nasty one.  Someone has been telling people that I am a public speaker.  I'm here to tell you - nothing could be further from the truth.  Given the choice, I'd rather be forced to cook every night for a month than talk in public.  But please don't tell that to my husband who might come up with a way to test that.

In any event, this morning I was given the great honor of speaking at the Nemours Leadership Institute.  I stood in front of close to three hundred administrators, lawyers, chiefs of departments and other leaders at DuPont... "Gavin's Hospital."  They asked me to kick off their day long workshop as a "Connect to Purpose" moment.  By telling our story, it would hopefully remind all the leaders of this hospital why they do what they do... connecting them back to their true purpose.

Like I said... I'm not much of a public speaker.  I hope I was able to convey my thoughts and feelings well despite fumbling and leaving out paragraphs and making a really loud noise when I moved the microphone.  I'm grateful to my Mom for sleeping over last night and getting up with me before the crickets so she could support me.  And I was humbled by all the people who introduced themselves to me and told me they've been following Gavin's journey.  I joke about the public speaking (kind of) - but truly, any chance I get to inspire anyone at all with Gavin's life journey - it is a privilege.  And today... it was an honor.  I can't imagine ever saying no to anything this hospital asks of me. 

Below is my speech (with the photos I showed) in its entirety (including the paragraphs I completely left out when I lost my place!)...


I was so flattered when I was asked to speak to all of you today about our journey here at your hospital.  We have spent the last five and a half years here with our son, Gavin, until his unfortunate death this past April.

 But before I talk about Gavin… I want to talk about my Dad.  My Dad died not even two years ago.  Over my 43 years, I learned a lot from him.  But there was one story that he told all five of us - and many of his grandchildren - that I want to share.  Hopefully, it will be a story that will stay with you after today.

 My Dad's father came to America from Ireland and had little formal education.  My Dad described him as a "simple carpenter" and he worked very hard to support his four children.  My Dad was very smart and by 19 he was in the Navy and teaching a Trigonometry class to his shipmates.  One night, home at his parent's house in South Philadelphia, he was sitting at the kitchen table working on some Trigonometry problems when his Dad peered over his shoulder. 

"What are you working on, Tom?" 

"Pop - you wouldn't know anything about this.  This is really complicated Math,"  my Father replied.

About an hour later, my Dad went off to bed.  The next morning he came downstairs into the kitchen.  Tucked under the sugar bowl was a piece of paper.  It had all of his Father's answers to those complicated Math problems… and his answers were either correct - or much closer than my Dad's.  My Dad always ended the story with this:  "Never think you are so smart that you can't learn from someone else."

 We first entered the doors of this hospital as scared, first time parents.  Just months old, Gavin had contracted RSV and - unbeknownst to anyone at the time - botulism on top of it.  He had been transferred from Bryn Mawr hospital after a two week stay where he continued to go downhill.  We were scared and feeling pretty powerless.  But we quickly realized that we were safe here.  That Gavin was safe here.  And the chip on our shoulder quickly shattered to the ground.  Why?  Because everyone we encountered - from the nurses to the doctors to the geneticist to the social worker to the therapists… none of them acted like they were so smart that they couldn't learn from us.  After all, we were the experts on our own child.

 I lived with Gavin in a room on 3E for close to three months.  Not one nurse batted an eye when I practically re-created the nursery I had created at home in his hospital room.  I had his mobile and blankets and toys and books and decorations.  They seemed to know that this was what I needed to feel some kind of control in a very out of control situation.  As a matter of fact, nurses always made sure that I could mother my child even during a crisis.
That theme continued over the next five years.

I was in a hospital where doctors took us seriously.  I did an extraordinary (borderline obsessive) amount of googling and researching and would present ideas or suggestions or theories about Gavin's care or his diagnosis or his treatments… and, never once was I blown off.  Gavin's long suffering geneticist, Dr. Gripp (and one of my favorite people), bore the brunt of my google addiction.  She would frequently open her computer to find an email from me composed at 1, 2, 3am with yet another suggestion for Gavin's possible diagnosis.  She never - not one time - changed her email address. 

Administrators even took us seriously!  One day I was at the hospital with a two year old Gavin and his little brother, Brian.  I had never ventured out onto the playground before - but that day I decided to be brave.  As quickly as I got out there, I had to turn around and leave.  And I cried all the way home.  There wasn't a single swing that would have supported Gavin, who had low tone and Cerebral Palsy.  I wasn't about to subject him to watching me push his little brother in a swing as he watched from his wheelchair.  No way.  As soon as I got home, with Gavin on my lap - the two of us composed an email to Tom Ferry, the then CEO of the hospital.  I told him the story - and ended my email with at least five links for affordable wheelchair swings.  I shouldn't have been surprised - but I got a return email from him less than a day later.  And, probably within a month, a wheelchair swing was installed.
Gavin had a febrile seizure that triggered cardiac arrest on April 10th at Paoli Hospital's ER.  They brought him back and the moment they said "The chopper is here." we felt like we could breathe.  We knew he was coming home… to the hospital where he was loved and cared for his entire life.  The next four days we were able to sleep with him, bathe him and say goodbye. 

Perhaps you heard that Gavin's eye surgeon, Dr. Lehman (another one of my favorite people!), caught an earlier flight home from her trip when she got the news so she could see Gavin before he died.
  Or that Trish Gonzalez came to our room and let us tell stories about Gavin - and then composed the original song - and even performed it at his funeral service.  Perhaps you heard about the huge role that Jenn Jankowski from Child Life played in his final days. 
She helped us help Brian say goodbye to his best friend… and she gave him tangible and intangible tools to deal with his loss.
And, in a moment you'd only see in a Lifetime Movie - and proof that sometimes hope arrives in your darkest hour, I woke up next to Gavin on the day he died - which happened to be my 43rd birthday – with an overwhelming feeling that just seemed impossible.
 I just knew I was pregnant.

After years of infertility and losses, we had given up and weren't even trying.  Yet I knew that I was pregnant - and knew that it was a girl - and knew that we could only name her Hope.  Gavin's little sister will be arriving straight from Heaven this Christmas.  

Or maybe you heard about the poster that Child Life made on my request that said "Superhero Gavin - Off to Save Lives".  It was taped to the foot of his bed as he was wheeled down the hall for his organ harvest.
Or, how as we followed Gavin's bed down that long hallway to the OR on that last day… doctors and nurses and social workers and respiratory therapists… were all lined up and clapping for our hero son.

Raising a child is hard.  But add onto that complicated medical issues… a disability… special needs… or dealing with an undiagnosed child… and it's even harder. 
As parents, we walk into this hospital with our most precious gift.  Most days we ask that you see beyond the chip on our shoulder… the defensiveness… the disagreements… and realize that it is often a cover up for our fear.  Our powerlessness.  The gift that this hospital has given to us over the years was giving us our power back.  We went from "What to Expect When You're Expecting" to "What in the WORLD?  We never expected any of this!!!"  At times we felt defeated.  But each time we came to this hospital, we were guaranteed to be heard… to be respected… to be encouraged.  It was like coming to our own personal pep rally.  I would drive home feeling confident and empowered as Gavin's Mom.
  That was a gift. 

As I think what "connect to purpose" means to me - I know that my purpose was to be the mother to my children.  I believe that this hospital's purpose is not just to serve children… but to find ways to empower the true experts on these children, their parents.
Whether you sit in an administrative office, work in an OR, or have direct contact with families - don't ever think you are so smart that you can't learn from someone else. 

As it turns out, I learned the most from this little boy who never uttered a word.
  We had the journey of a lifetime together - and I was happy to share some of that journey with all of you today.

Thank you so much!


  1. That was a beautiful speech and I thank you for sharing it.

  2. Beautiful speech! What a dose of reality and inspiration to kick off their event. Thanks for sharing!

  3. Wow they will be lucky to take in anything else at that conference after hearing your words.
    Well written my dear, this hospital is lucky to have amazing parents like you who support and love their staff no matter what. Blessings.

  4. My sister-in-law, Dr. Heather Nardone, is an ENT physician at Nemours and it warms my heart that she is part of such an amazing health organization. THANK YOU for recognizing all of the wonderful people who work there and have such an impact on the lives of all of the families.

  5. I am sure that your presentation and delivery was every bit as powerful and insightful as your written word. Your words were/are honest, heartfelt, sincere and motivating (no doubt) - can't imagine a dry eye in the "house"!

  6. That was beautiful. How wonderful that you can remind the doctors what they're there for.

  7. I loved reading your words for a few reasons. First, I'm a public speaking teacher at a community college in the Chicago suburbs. You do what I always tell my students to do - speak about a topic you feel passionate about! You put your heart in every word you write. Bravo. Second, I'm the mom of a special needs daughter. I see so much of Brinley in Gavin - they have those same sweet eyes. And they both (without uttering a word) have taught their mamas the most beautiful, important lessons in life. May God continue to bless you.

  8. I teared up again reading this. I know your story. I have seen the pictures before, but I still choked up again when I read your speech. I know that this has been said more times than you ever wanted to hear, but I am so sorry for your loss. I am so sorry for your immense loss of Gavin. May he rest in peace.

  9. Many tears. Thank you for sharing yourself and your family's story.

    Susan from GA

  10. Absolutely beautiful and so well written!
    Deb from Exton, PA

  11. Holy cow - I knew all of that and STILL, STILL you make me cry every time - I need to go cuddle my kids in bed, but they are FINALLY sleeping in their own room!!! ARG!! What a sweet quandary I am in...thank you, once again, for perspective!

  12. The day i stop learning from my patients is either when i die or give up nursing because of it.

  13. You should be proud of yourself, that was a beautiful speech.

  14. I just came across your blog and read your beautiful speech. I too have been greatly impacted by beloved hospital and there ability to save my daughters life when she was born at 28 weeks. Thank you for being and inspiration and I hope I can touch people's lives with my story in the same way you are touching people with your. Praying for you. Courtney


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