Tuesday, April 15, 2014

Off To Save Lives...

On this day last year, our son officially became a hero when we made the decision to donate his organs.  Please read about our experience... and the magic that happened in the days that followed.  I hope, with all my heart, that reading our journey... Gavin's journey... will inspire you to register yourselves as organ donors and talk to your loved ones about your wishes.  The more people that know your decision, the better.  And please - if you have children - discuss the "what if" scenario with your spouse or partner.  It's a terrible thing to think about, but trust me... you'd much rather have a decision like this made ahead of time.

On this day last year, our son officially became a hero...

Last night, after the pronouncement of Gavin's death, I gave him a final bath.  He has always loved his bath and I'd often let him stay in there way longer than he needed because he was so happy.  Water in any form was his Heaven.  Whether it was a dripping faucet, a bathtub, a baby pool or the big, wide ocean.  Bathing him felt loving and motherly and respectful.  I always end his baths with a body massage, and last night was no exception.  I just wish I heard the giggles again when my hands reached his inner thighs.  I then cut some of his hair to bring home.  Later, I curled up next to him for our final night together.  I buried my face in his shoulder and neck and tried hard to imprint his smell into my brain.  I never want to forget his sweet smell.  His smooth, fair skin.  To me, Gavin was always perfect.  

This morning when I opened my eyes and looked at Gavin, I wept.  Today was the day I dreaded.  The day we would leave the sheltered and protected cocoon of our hospital room and escort Gavin to the operating room.  

The day we would finally leave our boy and go home.  

As the clock ticked, we waited anxiously for word about matches for Gavin's organs.  Soon we were given wonderful news.  There was a match found for his liver.  A three year old little boy from Texas.  Ed and I agreed that thinking about the little boy's parents getting the news brought us such comfort... and it made us so proud.  They were also working on a match for his kidneys - and told us that it was possible that both kidneys might go to one person.

The clock continued to tick and my anxiety began to climb.  The thought of giving up my child's body - similar to how I handed over my sweet Darcy Claire's body after she was born - made me want to vomit.  So I got busy.  I made some funeral arrangements... I combed through readings and poems... and I paced.

Tick... tick... I could feel my heart beating out of my chest.  I watched Ed crawl into bed with Gavin and weep.  The three of us had our final group hug.  The anxiety grew.

They told me it was thirty minutes until they would come up to get him.  I had an idea.  I quick put a call in to the Child Life department - to Jen, who was incredible the day Brian came in - and told her I needed her help.  And fast.  I asked if she could make a big sign for me that I could tape onto Gavin's bed.  "It's kind of hokey, probably, but it will make me feel better," I told her.  I explained what I wanted and she MORE than delivered.
Tick... tock... tick... the minutes passed as seconds and they were there.  A whole group of surgeons waiting to take our son.  I walked out into the hallway, closed the door and pointed to a picture of Gavin standing tall and proud.

"This is Gavin.  Our son.  He just started to walk, you know.  That wasn't supposed to happen.  And this is his brother, Brian, who loves him very much.  Please take good care of him."

The group of them respectfully walked into our room and began to prepare him to go.
Next thing I knew, they were wheeling Gavin out of the room.  We walked behind slowly and soon heard a slow clap.  And as we continued down the hallway we saw doctors... nurses... respiratory therapists... aides... cleaners... all lined up.  They were all clapping for our superhero.  Ed and I barely held it together - between the emotion and the pride about to burst out of our chest.
We got to the double doors... and with that, we said goodbye.
Ed and I walked back to the room.  I scribbled "Do Not Disturb" on paper and taped it to the door.  We sat in the empty room in silence.  I don't think either of knew what to do - what to feel.  We just stayed silent.  No beeping monitors, alarms, or the sound of the ventilator that had been keeping our baby alive.  Suddenly, the silence was deafening.

We dragged our feet leaving that hospital.  It was too hard.  Knowing our history there... knowing we wouldn't need to return there like we used to... knowing we were leaving our child's body there and he'd be sleeping in a morgue tonight and not curled up next to me.  We went to the gift shop and bought hanging butterflies to use somewhere at his funeral.  And we made our last visit to the chapel.  I visit that chapel and write in the prayer concern book every time we're in the hospital.  Sometimes I write a request... but often times I write a thank you.  Like when Gavin sat up for the first time alone - on the altar in that very chapel.
Walking into the house was so difficult.  The first thing I saw was his wheelchair.  Next, his shoes.  On the island was the Big Mac switch that I had ordered so excitedly a week before.  Gavin had just started making progress in trying to communicate.  I swallowed the lump in my throat as I simultaneously felt my heart leap for joy once I saw Brian.  He smiled nervously... then looked behind me and said, "Daddy?"  I said yes, he was home, too!  Then he said, "And Gavin??"

It's going to be hard.

We did a lot of playing, doing puzzles, hugging, hide and seek and kissing.  And then the phone rang.  Ed motioned to me that it was the transplant coordinator with news.  The two of us got extremely flustered as we grabbed paper and pens and tried to figure out where we should go to talk.  We decided to run down the basement and put her on speaker phone so Brian wouldn't overhear.  Ed and I were a wreck.

The news she gave us leveled me.  The news was similar to a sucker punch to the gut.  She explained that the surgeons, upon removing Gavin's liver, discovered that they wouldn't be able to use it.  It had a small portion that was not acceptable - which made the whole liver unusable.  The little three year old in Texas wouldn't be getting his miracle tonight.  We were crushed.  It got worse.  She told us that his corneas weren't able to be used, either.

We are holding out hope for his kidneys.  Both of them are making their way out west and she said she'd update us tomorrow on the status.  I couldn't help but feel so disappointed.  Which then made me realize that's probably a fraction of how the people who wait on a list for organs must feel.  Imagine being told they found a possible match for you... or your child.  You'd obviously get your hopes up!  Then imagine the crushing blow when hours later you're told it didn't work out.  

They did something for us in the operating room.  We requested that they take a skin sample and freeze it.  Down the road, when there are advancements in genetic testing, Gavin's DNA could be used for diagnostic purposes.  And it could also be used for research.  Maybe his "undiagnosed genetic syndrome" will end up being named the "Gavin Syndrome" or "Superhero Syndrome."  Hey, you never know.

I am trying not to get too wrapped up in the outcome of the organ donation process.  It could easily shatter my heart.  I have to keep reminding myself of my philosophy about gift giving.  That you can't give a gift with attachments.  If you give someone a gift and expect that they'll use it... thank you for it... not return it... love it... and they don't... you'll be very disappointed.  But you'll also be making the GIFT about YOU.  When you give a gift - a true gift - you expect nothing in return.  Gavin's gift is the chance of organ donation.  There's never a guarantee that it will work.  Whichever way it turns out, Gavin is my hero.  His death was not in vain.

This is the end.  

But it's not over.
Thank you.  Thank you.  Thank you for loving our little boy.

I remember that night like it was yesterday.  When we got the call that Gavin's liver couldn't be used.  I was crushed...and so, so devastated for the mother of that "little boy in Texas."  Because of my blog - and my oversharing - I ended up being connected with that Mom.  Her little boy?  His name is Miles.  We had email exchanges that changed both of our lives... and, in my opinion, many other lives.  You can read about it in THIS post.  (Please do!)  You'll be happy to know that Miles ended up getting a new liver not long after Gavin died and he is doing so, so well.

Gavin's story - and that iconic photo outside of the operating room - spread all over the world.  Over this past year, I have received thousands of emails from donors and recipients thanking me for sharing.  That's really all I have done - share.  I don't deserve any credit or praise.  Sharing is free - and reading is free - and the meeting of the two has created magic this year.  Organ recipients, who sometimes carry a burden of guilt that their gift came at someone else's expense, felt their burden lifted upon reading that it was a "privilege" for us to go through the organ donation process.  And families of donors like Gavin felt their grief eased a bit upon reading our perspective.  This, to me, is the single best thing that could come out of this awful tragedy.  And every single time I get a message or see a comment or someone tells me that they became an organ donor because of Gavin...I feel such immense pride to be his Mommy.

I don't know anything about the man that received Gavin's kidneys, and that's okay.  I wrote a letter on this blog that you can read HERE.  Perhaps it will reach him somehow - and perhaps he will never see it and never reach out.  Either is okay.  I pray for his health often.

That day was tough.  I had never left that hospital without Gavin.  Knowing that I was saying goodbye to him as they wheeled him into surgery...and that I wouldn't be waiting for him in recovery...it was very painful.  I knew that after the surgery they would be removing the ventilator and it would be then that his heart would beat for the very last time.  It wrecked me that I couldn't be there for that final moment.  Even though Gavin was brain dead...and really not "there"... I still wanted to be there.  But I couldn't.

But she was.

Our incredible nurse, Dawn.  She was there for the organ harvest and after it was over she stayed.  She cleaned up our precious son's body and, in an act of pure compassion and selflessness, she sang to him.  She knew that I always sang to him...and she knew his favorite songs...and she sang my son into Heaven.  I will never, ever be able to repay her.  And if she is reading this, I want her to know that not a day goes by that I don't think about her beautiful gift to this grieving Mom.


  1. And she sang him into Heaven....this is so heartbreaking and heartwarming all at the same time.
    I don't think I would have the grace or strength, as you do, through the loss of my child. I am always in awe of your posts. Thank you for sharing Gavin, and your precious family with us.

  2. And she sang him into Heaven....so heartbreaking and heartwarming at the same time.I don't think I would have the grace or strength, as you do, through the loss of my child. I am always in awe of your posts. Thank you for sharing Gavin, and your precious family with us.

  3. Kate, I have read your blog for so long and never commented. As I sit here with tears running down my face, I just feel the need to tell you that you have not only inspired me, but so many many others with your heartfelt and beautiful gift of writing, about a beautiful super hero that has touched so many lives without every trying. Thank you for your honesty and your beautiful soul. We are all so blessed to have you in our lives. I know you don't write for "us" but I look forward to reading your words daily, as they are a reminder of how beautiful life is.

  4. My sentiments too..."and she sang him into Heaven"...how so very bittersweet. And such a sweet send-off for your dear little boy. You relished in every single moment you had with your beloved Gavin. Through tears, please know that prayers are with you and your family, always.

  5. My 16 year old son made the decision to become an organ donor yesterday. He said when I die, i won't need them but some one else might. I'm so very proud of him. Thank you Gavin for being such a great role model.

  6. And like always your blog once again reminds me in big bold letters that EVERYTIME! as long as you look for it LOVE WINS! How you live your life- as a testament to your son's spirit -speaks that over and over again. Thank you for always reminding this Mom this mom to look for how loves is winning!

  7. Your post brought tears to my eyes and I pray for your family every day! Thank you for sharing your beautiful family with all of us!


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