Dear You, Who Received My Son's Kidneys...

Dear You,

There are pamphlets and tips for writing a letter like this.  A procedure to follow that asks that you leave out any information that would identify yourself or the organ donor in the hopes of ensuring privacy for all involved.  I have tried to write that kind of letter - the proper one, I suppose - many times.  I just can't do it.  So I am resorting to my own method - my online journal where I can write what I need to write. Because you must know - this letter is what I need.  It's what I need you to know.  It's what I need to write as part of my healing.  It's what I need the world to see about the beauty that organ donation brings to a tragic and devastating situation.

Dear You, I want you to know that my hope and prayer is that this reaches you... the one that received my son's kidneys on or about April 15th from a hospital in Delaware.  We were only told that you were a man in his 40s who lives "out West."  West Coast?  MidWest?  We don't know.

I also want you to know that I am not looking to invade your privacy in any way.  I'm not looking to post information about you on my blog.  Although my heart's desire is to just know - somehow, someway - that this reaches you... the real you... I don't want you to feel pressure to reach out to me.  I am comfortable with anything YOU are comfortable with.

I really hope that your transplant went well, that you had a textbook recovery and that you're enjoying life in a way that you couldn't before.  And I very much hope that these new kidneys ensure that you live many more happy and healthy years.

I can't imagine what it must feel like to be the recipient of an organ from a donor that has died.  Especially if you know that your donor was a child.  In this case, he was.  His name was Gavin David Leong and he was 5 1/2 years old.  I tell you this not to make you feel bad - or to make our story more dramatic.  I tell you this because our little boy had the body of a 5 1/2 year old - and healthy kidneys - but his soul?  His soul was old... and wise.

Gavin had an undiagnosed genetic syndrome that made him a little bit different.  He was born with very low tone which made physical things like sitting up, crawling, feeding himself and walking difficult.  He also was non-verbal and had developmental delays.  We were told he had Cerebral Palsy, but I truly never believed that.  Slowly... and in his own time... Gavin defied every prediction put upon him.  He hit his own milestones and we were so, so proud of him.  Just before last Christmas, 2012, he took his first steps at 5 years old.  It was one of the happiest days of my life.

Gavin had his physical and developmental issues, but he really was the healthiest person in our house!!  He had an amazing diet of homemade pureed food that I made and we took very good care of him.  I'm so glad that his kidneys were healthy enough for you.  His good health makes his sudden death that much more shocking for me.

On April 10th, I noticed he was getting warm and then he started to get lethargic.  We happened to be right across the street from the emergency room so I brought him right there. I knew I was overreacting, but I brought him anyway figuring they could at least give him comfort measures for his fever. Looking back, my actions were completely guided that day. It was in the emergency room that Gavin had a febrile seizure. That seizure triggered cardiac arrest.  After six minutes of CPR, they were able to start his heart again and stabilize him enough to be brought by helicopter to Nemours A.I. DuPont Children's Hospital in Wilmington, Delaware.  I was so grateful as this was "his" hospital where he saw many doctors and had several different "minor" surgeries.  He was well known there and I knew we'd be well cared for.

It didn't take long for us to realize that Gavin was not going to make it.  Sir, I want you to know that one of the early conversations my husband and I had was about organ donation.  It was an easy decision for us and I'll tell you why. Our little boy, our first born, never uttered a word.  But throughout his short life, he managed to inspire people... heal people's hearts... change people... and help people.  And he started with us, his parents.  In our hearts we knew - if we kept him from continuing to help and to heal, we would not be honoring his life at all.  It became obvious to us that helping and healing had been his mission - his life's purpose. How could we not let that continue in his death?

Four days after his emergency room visit... on my birthday, April 14th... Gavin was pronounced brain dead.  That same morning, I woke up next to him in bed with an overwhelming feeling that I was pregnant.  At 43... after years of infertility and many pregnancy losses, this seemed ridiculous.  We had given up - and given all of our baby things away.  Sure enough, that overwhelming feeling turned out to be true. Gavin's little sister, Hope Margaret, will arrive in time for Christmas. Gavin's 4 1/2 year old brother, Brian, can't wait to be a big brother.  In my heart, I feel Gavin is sending Hope to us from Heaven.  

We stayed overnight with Gavin until they brought him to the operating room for the organ harvest on April 15th.  I need you to know that it truly was a privilege for us to wait.  We were grateful for the extra time with his sweet body... but we also wanted to escort Gavin as far as they would let us before surgery.  We posted a big sign at the foot of his bed that said "Superhero Gavin - Off To Save Lives!"  

As he was wheeled towards the O.R., with my husband and I proudly walking behind, the halls were lined with doctors and nurses and other hospital personnel.  They were all clapping.  Clapping for our son.  They knew what we knew - that he died a hero.

Dear you, I need you to know that donating our little boy's organs brought us much comfort during the darkest time in our life.  I really need you to know that.  I want you to accept his kidneys as your own with no guilt... or worries about his family.  We chose organ donation and embraced it fully because we wanted Gavin to continue to help people.  And believe me... he may have started with you, but he is helping a lot of people still.  I have been writing and talking about his organ donation since that day and am so proud that hundreds of people have written to me to tell me that they registered as donors.  And others have told me that they have had the conversation with their spouses about choosing organ donation if, God forbid, something happens to one of their children.  As you can imagine, it's a much easier conversation to have with a clear mind.

Gavin's death and his organ donation may have given you health... longer days on this Earth... or maybe it even saved your life.  I would be thrilled for any of those scenarios for you.  But you should know that his even greater gift to the world has been to inspire people who have followed his story to help others - in big and small ways.

You have very special kidneys now.  They come with superhero powers and a piece of our little boy's spirit attached to them.  We are happy to share him with you in this special way.

If you do want to contact me, you can email me through this blog.  Or you can write to me through the Gift of Life Donor Organization.  Either way, I will be able to verify that you are indeed the recipient of Gavin's kidneys through them.  If you do want to stay anonymous, they will ensure that!

Dear you, I wish you many, many years of health and happiness.  

With every good wish,

Kate, Ed and Brian Leong

(If you are reading this and feeling inspired to become an organ donor - please look into registering online in your state!  If you're in Pennsylvania, click HERE to register.  You don't have to wait to renew your license!  And please write on the wall of my Chasing Rainbows Facebook Page to let me know if you did.  Your posts may inspire others to do the same!  Let's help Superhero Gavin continue to inspire others to save lives, too!)

In Lieu of Flowers - Part Two...

Today has been a very difficult day for me and for Ed.  This morning, after a fitful night, we met with the funeral director.  The only thing that made it easier is that we know this funeral director personally.  He handled the arrangements for my grandparents... my father... and our sweet daughter, Darcy.  It's comforting to know that someone we love is in charge of Gavin's body.

The funeral arrangements have been 100% confirmed.  Everything will take place at Epiphany of Our Lord Church in Plymouth Meeting, PA.  There will be two visitations - Monday night from 6-8pm and Tuesday morning from 9:30-11.  Then there will be a funeral mass and celebration of Gavin's incredible journey starting at 11am.  I have one small and seemingly silly request.  Please try not to wear any perfume or cologne or anything scented. I was always very protective of Gavin around strong scents as it often caused a skin flare up.  It's also dangerous for kids with respiratory issues.  I think if I smell things, my instinct will immediately go to protecting Gavin which will lead me to remember he's not there which might provoke a meltdown of epic proportions.  So... thanks for your understanding.

There are so many decisions to make and things to plan - it's truly overwhelming.  On one hand, staying busy is keeping me upright.  On the other hand, I'm stretched so thin and am afraid I'll forget important things.  I have been very grateful for the outpouring of support and generosity.  Late last night, while trying to read just some of the thousands upon thousands of messages and comments and emails, I happened to open one from Gene McGonagle - the owner of Ambler Flower Shop.  To honor my birthday request, he said, he wanted to pay it forward and donate all the flowers for the funeral.  He even drove to our house today to walk us through the planning.  We chose a lot of blue hydrangeas.  Gavin looked the most handsome in blue.  I also have offers from videographers that I need to comb through - I mentioned that I wanted to videotape everything and share it online one day.  One, because there are so many people that are invested in our son's story and it's only fitting that they be part of the final  celebration of his life.  But mainly my wish is to have something for Brian to see when he gets older.

I also started to see glimpses of some of the birthday projects people have been doing.  Teachers are having their entire class do projects in Gavin's name... others have written about small acts of kindness... everything I saw overwhelmed me with gratitude and lifted my spirits.  Gavin was such a special child with such a giving spirit - I know all of these acts are making him so proud right now.

Today I would like to tell you about the two other organizations that mean so much to us that we would love for you to consider donating to in honor of Gavin.  The first one is Gift of Life Family House.  But before I tell you about this organization - let me tell you some incredible news.

Gavin's kidneys - both of them - were transplanted into a 40 year old man last night.  Today, he's recovering nicely.  We are rejoicing with him and his family today.

If this man received his transplant in an area away from his home, the Gift of Life Family House would provide a "home away from home" for his family during and after his transplant.  It's similar to the Ronald McDonald house in that they charge a very small fee for a place to stay, meals, support and more.  Here's a short (and emotional!) video that can explain more about who they are and what they do... including offering home cooked meals by volunteers every night!  

From the Gift of Life website:

Gift of Life Family House serves as a "home away from home" for transplant patients and their families by providing temporary, affordable lodging, home-cooked meals and supportive services to those who travel to Philadelphia for transplant-related care.

Families staying at Gift of Life Family House are asked to pay a nominal guest fee of $40 per night per family in exchange for their room, meals, secure parking, van transportation to/from area hospitals, communal kitchen and living room areas. No family is turned away due to their inability to pay.

For online contributions:

http://www.giftoflifefamilyhouse.org/support/giveagift/

Or direct
 https://secure.acceptiva.com/?cst=841eb8

By Mail: 
Gift of Life Family House 401 Callowhill Street Philadelphia, PA 19123

Thank you again for selecting Gift of Life Family House as the beneficiary for Gavin’s memorial contributions.

Now I have something to confess.  Last night, when we got the news that Gavin's liver turned out to be unusable for transplant - I was completely shattered.  Like, collapsed to the floor in sobs kind of shattered.  I cried for the three year old little boy... I cried for the hope that I had... I cried for Gavin.  I really had to dig deep to change my focus.  And then... I opened an email titled "From a Transplant Mom" and read this: 

When my son was 9 months old, he received 5 organs- stomach, spleen, liver, pancreas and small bowel. So many nights I have dreamt what must have happened on the "other side" of our story. What that family must feel or even how the process works. I think being the mom of chronically ill child, the details and procedures become very important. Or it could simply be the control freak in me that longed to know. Your words gave me peace knowing that your son was carried into Glory a HERO. I could hear the applause as I read. We don't know our donor and we may never know whose precious child saved ours, but I felt so connected to you and your words. We are very involved in our local organ bank and transplant world here in Dallas, but I have never heard a donor family describe with such grace- "it was our privilege to wait" -wow. It's easy to be on my side and receive the call, but to know you are comforted by your giving just spoke to me. 

Your son and your decision did save someone's life. Maybe his organs didn't get transplanted, but someone standing in that hallway clapping for your hero will remember him and maybe they will have the opportunity to save a life, someone reading your blog who never thought of organ donation will sign their card and send it in. And a mom like me, who has finally found normal after fighting so hard for my baby will remember your incredible son and his gift and hug a little tighter and give thanks more often. 

Your sweet Gavin changed the world.

 It would mean the world to us if you would make a contribution (even five dollars!) to the Gift of Life Family House in Gavin's honor.  Down the road, we will get a letter of the total donations and all the donors names (without your donation amount!).  We will always have a special place in our heart for the Gift of Life program.

Whether you give or not, I hope everyone is inspired by our journey through the organ donation process.  It is my greatest wish that part of Gavin's legacy is helping to change people's perception of organ donation... opening people's eyes to the great need... and motivating them to become an organ donor and express those wishes to their loved ones.  You, too, can become a superhero like Gavin Leong.

Become an organ donor now by following this link:

http://www.donors1.org/registry/

The final organization we are asking for donations in lieu of flowers is one that is important to Gavin and me.

CaringBridge

When Gavin was two months old, he developed RSV and Botulism.  (To this day we don't know how he got Botulism)  In total between two hospitals, the two of us spent 10+ weeks side by side in a hospital room.  Two weeks in, a volunteer stopped by our room... lent me a laptop... and told me about CaringBridge.  It's a free site (run on donations) for people to create a personal page where they can update friends and family on their health issue.  I started writing one night - wrote every single day - came home with Gavin and kept writing - and, as you know, I never stopped.  CaringBridge is what accidentally made me a blogger. 

You can click here to get to my original CaringBridge site.  In those first months with Gavin - dealing with hearing aids and feeding tubes and night oxygen and nursing care and on and on... CaringBridge became my lifeline.  I would pour my heart out or I'd ask for advice or I'd celebrate one of Gavin's "smilestones" as I called them... and people would be there.  I barely left my house in those days, but because of CaringBridge - I never felt alone.  

Along the way, I became friendly with some of the staff and they always made me feel like Gavin was their special star on the site.  They even featured our story on their website...

We would be honored if you would consider donating to CaringBridge as a tribute to Gavin.  You can even go right to Gavin's CaringBridge page to make a "tribute donation" - and, again, no amount is too small.  Small acts of kindness often make the largest impact.  

Gavin, Mommy is so heartbroken.  This still doesn't seem real.  But I'm trying to do right by you, as always, and I will make sure that no one ever forgets you.

You have my word, Bugaboo.

The End...

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, kissing, playing and both catching up with and smothering Miss Sara with our thanks.  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.