Why I Am Sharing Gavin's Life on Facebook...

If you have been following me on the Chasing Rainbows Facebook Page, you've been watching me share photos and memories of Gavin's life.  I started the day he was born... and I'm up to his 3 1/2 year birthday.  I'm not planning on stopping until I reach the day he died.  I'm not sure how long it will take me - but I don't care.  You should know, though, that it could take me a while!  I took photos nearly every day of his life!!

I'm sure from the outside looking in, one might think I am a grieving Mom trying to share memories of my deceased son.  This is true.

Maybe others might think that I want to ensure that Gavin is not forgotten.  Well, this is also true.

One of the big reasons I'm sharing is to pass on all the things we learned along the way - ideas, tips, advice - in the hopes that it will help someone help the special needs child in their own lives.

But that's not all.

There is a bigger reason why I'm sharing Gavin's journey.  And I think that, in doing so, I am helping fulfill his mission of spreading positivity, hope and inspiration.

I really don't think it was a coincidence that we were completely unprepared for a special needs child (there were no prenatal indicators)... and then completely unprepared for his death (which came as a shock to everyone - including doctors).  I'm not sure we needed to know... or were even meant to know.

We all are here on this Earth for a reason.  Each one of us.  Some of us are lucky to know just what that reason is... and we make the most of it.  And some of us trudge through life just surviving - and miss the point.  Early on in Gavin's life, I felt like I understood his purpose - and it helped me understand my own.  He had a message.  And I was to be his messenger.

It all sounds so silly, I'm sure.  He was a child.  On top of that, he never spoke.  How could I possibly know what his purpose in life was?!  But it all just seemed so clear. 

In my life leading up to becoming a Mother, I faced obstacle after obstacle.  And, truly, I didn't handle them well.  I turned to self abuse - eating disorders - and alcohol over the years.  I even attempted suicide at one point.  You can read more about my wild and wooly history HERE.  

I got married and got myself together and we got pregnant.  I really thought - all my troubles are over.  I paid my dues in life and from now on it's smooth sailing.  I have my 'stuff' together and we're going to have a beautiful life.

My pregnancy with Gavin was a bit rocky - but we didn't have any indicators that told us he'd have anything different or "wrong" with him.  I had a moment in the NICU where I lost my mind - and truly thought I couldn't handle it - but something came over me that I can't explain.  This baby needed us and we needed to just pull it together and adjust.  I don't think people talk about these feelings.  But I do. Know why?  Because someone out there is sitting, right now, next to their newborn child in the NICU and freaking out... disappointed... scared... and wondering what happened... if they can handle it.  Or a couple has been given pre-natal indicators that they won't have the child they dreamed of and are weighing their options.  I wrote a letter to that very person and people like him or her in the post "Dear You,".  We got through that difficult time - and Gavin helped us.  By telling his story from that time, we can spread hope.  Hope that things will be alright.  Hope that you can survive the unexpected.  Hope that your marriage will survive.

And me?  The one with the unstable history that proved time and again that I couldn't handle things well?  I am 1000% sure that was why I was chosen to be Gavin's mother.  He was my greatest teacher, this child.  And he showed me that I could, indeed, handle things - and get through difficult times. He inspired me to stay positive and focused and not wallow in self pity.

As Gavin grew, his problems also grew.  He was hospitalized for months with RSV and Botulism.  He had therapists coming to the house nearly every day.  We had to learn how to use oxygen, insert feeding tubes, manage feeding pumps and more.  We had to navigate the crazy insurance world and fight for things.  And it became my personal mission to research and find ways to heal Gavin - and heal ourselves.  Through all of these years, Gavin smiled.  And smiled.  And it made it easy for us to smile through everything, too.  And through all of those years, Gavin slowly busted down every negative prediction or diagnosis.  He held his head up... he sat up... he pulled to kneel... he crawled... his permanent hearing loss was restored... he avoided a permanent feeding tube and ate orally... and he even started taking steps - just four months before he died.  By telling these stories and showing the photos and videos of these milestones, we can spread inspiration.  We never believed anything - any diagnosis, any prediction - because it was Gavin's journey... not theirs.  I truly believed that he would be the one to show us what he was capable of.  And no diagnosis or label was going to get in the way. That would just keep him stuck - and us stuck.  "Oh, he'll probably not sit up?  Okay - then why try." "Oh, he won't eat?  Okay."  We refused to give up because Gavin showed us that he refused to give up.

And through all those years with Gavin, we faced even more obstacles.  Miscarriage after miscarriage - and the birth and death of our daughter, Darcy.  My diagnosis with Rheumatoid Arthritis and Fibromyalgia.  Gavin's crisis with a corneal abrasion that nearly cost him his eye.  The death of my beloved Father.  But we got through it all.  We are proof that you really can survive anything.  And we want to share the good, the bad and the ugly so we can show others that they, too, can survive. 

Gavin endured much in his short life.  Sure, we were there - but it was HIM that went through it and did the hard work.  It was such an honor, as his parents, to witness his sweet nature... his persistence... his positive spirit.  When he died, that is one of the big reasons why it was an easy decision for us to donate his organs.  Why wouldn't we want to share this child with others?  And, regardless of how the organ donation turned out in the end, why wouldn't we want to share his inspiring life's journey as a way to encourage others to become organ donors?

Ed and I have grieved greatly for our son.  But we have also made a pact.  The two of us have a shared experience in Gavin.  We watched him come into the world - we watched him struggle - we watched him overcome - we watched him get snatched from us in a second.  There is no way that one of us would leave the other - literally or figuratively - to be alone with the memories of experiences that were meant to be shared.  It's just not happening.  

Gavin had a story to tell when he was here.  And Gavin has a story to tell still.  The story is different for each person who reads about him... and that's how it's supposed to be.  His life is filled with lessons and wisdom and hope.  It has been my honor, truly, to share all of him with the world.  And I have sat and read the comments and the emails and the posts about how touched people are by this little boy they've never met... how his story has inspired them in one way or another... how people have decided to change majors or careers because of Gavin's life... how parents have learned new ways to help their child... how parents have been given the energy boost they had needed to "keep on keeping on" with their child... and so, many more beautiful thoughts.  It has been humbling to watch our sweet little boy touch hearts and change perceptions and prove to people that every life matters.

Imagine... this little boy who never spoke touching lives all over the world.  Inspiring positivity and generosity and understanding.  Spreading a message - just with his life story - that you should never... ever... lose hope.

Imagine that.

That is why I'm sharing.  Gavin's voice deserves to be heard. And I am blessed - beyond blessed - to have been his Mommy... and his loudest mouthpiece.

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!)...

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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. 

(Kidding!)

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!