Tuesday, April 30, 2013

His Heart Just Kind Of Broke...

It has been a rough couple days for me.  And for Ed.  It's slowly getting more and more real for us as life has the audacity to go on.

Ed has returned to work.
Laundry need to be done.
Brian needs to go to school.
I need to take a shower.

Oh, wait.  I really do need to take a shower.  Some parts of life just don't seem to take a priority at the moment.

Brian is not one of those parts of life.
Last night, on a hunch, I said to Brian - "I want you to know that Mommy and Daddy did NOT want Gavin to go to Heaven."  He just stared at me - still as could be.  I am never sure in his four year old mind what he's thinking.  If he's wondering if we sent Gavin away.  If he's worried that he'll be sent away.  He continued to stare as we sat next to each other in Gavin's bed - Brian's new favorite place to be.

"Mommy and Daddy were very sad that Gavin had to die.  We didn't want him to leave us."

He broke his silence with, "I have allergies."

I knew it.  I suspected that he might associate Gavin's allergies with death.  Right before we got to the emergency room, we were at the acupuncturist who helps us with both boys' allergies.  She was actually the one who taught me the technique that eliminated (yes, eliminated) Brian's peanut allergy.  That morning, in her office, I had shared with her that I was DETERMINED to eliminate their seasonal allergies - especially Gavin's who were pretty bad that morning.  In Brian's mind, they both have allergies - and then Gavin went to the hospital - and he never came home.

"Yes, Brian.  You DO have allergies.  But you don't need to be afraid of your allergies.  Gavin didn't die because of his allergies."

He continued to silently stare.  This is very unlike him - to not be distracted or goofy.  I could tell I was hitting on something important.  I pressed on...

"You know the heart that beats in your chest - and mine?  Your heart is one of the things in your body that keep you alive!" I explained.

"The doctors couldn't give him medicine to fix him so he died," he said.

"No, the doctor's couldn't give him medicine.  His heart stopped beating in his chest - it just kind of broke."

He nodded his little head.

"That's why we are so sad.  And that's why you sometimes see Mommy and Daddy crying.  It's okay to cry - and if you are sad, you can talk to us."

"That's okay, Mommy.  My angry birds make me happy," he assured me.

"Brian, I bet Gavin is so happy that you're sleeping and playing in his room.  You know, you can talk to him anytime and he'll hear you!!  You may not hear him - and you may not see him - but he'll hear you!  Remember how I told you that Heaven's ALL around us - it's everywhere?  Not just in the clouds?"

"Uh huh..."

"That means that Gavin is always around us - he'll always be part of everything we do!"

With that he stood up in Gavin's bed and said, "Hi Gavin!  I love you!  I miss you!"

"Do you think he heard me, Mommy?" he asked with his little voice and his BIG, hopeful eyes.

"Yes.  I definitely think he heard you.  Actually - I KNOW it."

"You can go, Mommy.  Goodnight."
A couple months ago, I was asked to write a guest post on the blog Momastery - the HUGELY popular and inspiring "home" of Glennon Doyle Melton.  Glennon just had her first book published, "Carry On, Warrior - Thoughts On A Life Unarmed" where she writes openly and honestly about her life.  She calls it "shameless truth telling."  Glennon has been changing lives over at Momastery by sharing her truth - and allowing other women, in turn, to feel they don't need to be ashamed of their own truths.  While she's on her book tour, she's having guest writers and I was so, very honored that she asked me to be one of them.  I had just sent her my finished post on April 3rd.

My guest post will be up on her blog tomorrow.  It comes with a warning to those of you who know me well - or who have known me online for years.  Let's just say, if you thought you knew everything about me from my blog - you are in for a surprise.

Many people ask me how I can continue to find the positive when I'm constantly fielding hit after hit, year after year.  Or they wonder how I'm functioning after so much heartbreak.  This will hopefully shed light on that.  But my greatest wish in opening myself up to the world - especially now - is to show everyone that there really is nothing you can't get through.  Even the death of two of your children.

I am living proof.

(Like Momastery's facebook page - or check my Facebook page and I will update you when it's posted.)

One last thing... our little buddy, Miles, had a very successful liver transplant and is doing well.  His Mom and I are in frequent contact and I'm starting to think we are long lost sisters.  With her permission, I am sharing their CaringBridge page so that you can check in on Miles and express your support in her guestbook.  I think all of us will always feel a special connection to Miles.  And I know I speak for all of you when I say how relieved we all are that he got his liver.  Now we pray that the next month goes well and the liver falls in love with it's new, adorable home.

Monday, April 29, 2013

Respectfully Yours,...

Dear loving, kind and thoughtful readers, 

I have been completely overwhelmed by the outpouring of love, support, kindness and sharing of personal stories in my email, on my facebook page, here on the blog and in private messages.  I have been telling friends that in a way it's kind of funny.  I've been trying to tell the world since Gavin was an infant how special he is - I mean really special.  Not special needs.  So part of me feels like yelling "I've been trying to tell you, world!!"  I'm glad you all get it now.  There's just something about Gavin.

I know what it takes to write to someone you've never met.  It takes a certain kind of bravery.  I want you to know that I recognize that and it means so much to me that you would take time out of your lives to compose anything at all to me.  Your messages have been so kind and comforting. Thank you.

I also know the desperation of being a special needs Mom - or the friend of a special needs Mom - or a therapist or teacher of special needs children.  You want things that can be hard to get - answers, advice, equipment, etc.  I have been in  your shoes and I often had very little shame when it came to asking for things, for help, for guidance when it came to getting things for Gavin.  I have been you.

With that said, I just have one very small - and very humble - request.  I am not looking to embarrass or shame anyone.  And I would ask that no one make any comments to that effect after reading this - because I understand where people are coming from.  I just ask that you please not write to me asking if you can have Gavin's walker... or his wheelchair... or his clothes... or his anything.  It's just not the right time for this.  (The only thing we'd happily entertain is selling our Hyperbaric Oxygen Chamber which we've had on the market for a year.  We could really use the profit from that sale now!)

People may tell you (at least I hope they would!) that I go out of my way to help other parents all the time to share what I've learned over the years with Gavin.  I loved (and will love again) reaching out to parents who are holding a new baby - or just getting a diagnosis - and feel completely overwhelmed and afraid.  I loved to offer them hope - and the promise that they will get through this.  I always wanted to plant a seed in their minds and hearts that they would come out on the other end changed for the better - even if it seemed impossible to believe in that moment.

But... right now, it's too painful.  My identity was very wrapped up in all things Gavin.  That job for me is over - like getting fired without notice.  It sucks.  I'm feeling lost.  And as much as I want to help all of you that are writing to me asking questions about diagnoses and puree recipes and therapies and more... I can't.  I mean I could - but I just don't want to right now.

Sometimes you have to tell people what you need.  That's all I'm doing here.  I'm not upset (by any means) at anyone who has already reached out to me.  Not one bit.  But as Ed and I always say to each other - you can't hold anyone accountable for things they don't know.  You wouldn't have known I was feeling this way - so that's why I'm telling you.  I just know my limits and I wouldn't want to silently harbor a resentment if it kept going on.  That wouldn't help anyone.

Again, please don't make any judgmental comments about people reaching out to me or asking me things "too soon."  I know how hard it is to want answers or things for your children.  And if everyone just gives me some time... maybe a month or two... I'll be back.  

Respectfully yours,

Gavin's Mommy.

Saturday, April 27, 2013

When Light Barges In...

Today has been rough for Ed and me.  I put the TV on for Brian as soon as we got downstairs and I think we both prayed he'd stay occupied and not notice us.  We were both in bad shape.  We aren't hiding all of our emotions from him, don't misunderstand.  It's just that sometimes we need a little break from his incessantly cute questions and endless cheer.  But when he suggested that we all go up to play in Gavin's room, we followed his lead.  The two of us in our pajamas - close to lunchtime - read books and played for close to an hour as a family.  I'm sure all of us were in that room this morning.

And then, in a move that will ensure she gets the "Sister of the Year" award, Aunt Bean came by with Brian's cousins, Shannon and Claire, to steal Brian for the day.  They were going to cousin Brendan's baseball game, to a park, and to "Aunt Bean's fancy house" as Brian calls it.  I was happy he went willingly - and I hate to say that I needed him to go - but I did.  We both did.  We just needed a little peace.  Today is really not a good day.  It is such a struggle to balance personal needs and Brian's needs right now and I just hope (and pray and hope and pray) that he doesn't feel like we are pushing him away when we aren't with him every minute.  Even putting the TV on all day is so unlike me - but it buys me some quiet time and I'm grateful for that.

It's so important to me for the world to know how wanted... how cherished... how loved Gavin was.  I was so happy to be pregnant with him... to name him... to  meet him.  I never - ever - felt that his many needs were a burden.  I took pride in researching ways to help him... trying different alternative methods to heal him (many of which worked!)... going to shrines to ask for miracles... begging doctors to see him... writing letters to appeal for him... and always believing that one day he would walk and talk.  I just knew that one day he would tell us that all along he knew what was going on - he knew how we tried to help him - how we would have gone to the ends of the Earth for him - how we loved him.

I saved everything along the way.  Well, I stopped saving hospital bracelets after the 20th.  I kept NICU items, special articles of clothing, cards, artwork and more.  I actually displayed some of the items at the services.  They are exactly as they were in his memory box - with notes that were written when he was a baby...

This is a photo album filled with ultrasounds.  The first ten or so pages show Gavin and his twin... and end with a 4D shot of his precious face just a few days before we would meet him.

I saved every card from every baby shower...

While Gavin was in the NICU, Ed spent time each week picking out a new card to tape over his isolette...
And these are the cards we received to celebrate his birth.
And two of the many things I saved from the NICU.
I just knew - with all my heart - that we would sit and go through all of this one day.  And I could see him smiling as it sunk in just how cherished he was.  That every little thing I saved meant so much to me... and it was my way of showing him how I adored him - even before he was born.

Today is such a hard day.

But - in my despair - there is light peeking through.  Actually, more like light barging in and enveloping me in blanket of hope.

Remember the "three year old little boy in Texas" that was meant to receive Gavin's liver?  His name is Miles.  I was so crushed when the surgeons decided that Gavin's liver wasn't usable, as you know.  And, in a miracle of sorts, his Mother and I connected through the power of social media.  There are no accidents.  Well, this morning they got a call that there was another liver available for her little boy.  They got on a private plane and flew to the hospital.  His surgery is scheduled for 5:15pm if all is a go - so please send every ounce of energy his way when the clock hits 5:15 in Texas.  

I wrote this on her Facebook page today:  
As of right now, over 12,000 people have seen my post asking for prayers, positive energy and strong, happy thoughts to be sent your way, Miles. And I've personally asked Gavin to try to work some magic from Heaven. If he's as popular in Heaven as he is right now on Earth... he's got to have some good Heavenly connections to see you through this. The Leong family is rooting for you, buddy!!! ♥

And, with all that she has going on right now, Mile's mommy  graciously replied with:  
I had to hop on here and tell you... on the plane, once above the clouds, it was so peaceful and beautiful.  The sun was beaming down on our plane.  Through each of the tinted windows I looked through, little rainbows surrounding us.  Surrounding Miles.  I feel him, Kate.  I truly believe Gavin is somehow watching over Miles today.  I am so thankful we made this connection and I have a chance to share.  

Technically, we should never have met.  They have strict rules and really strive to protect the donors and recipients from contacting each other for various (and understandable) reasons.  But I truly believe, with all of my heart, that we were meant to not only meet - but comfort each other.  Help each other - and help others to see both sides of organ donation.  It is truly such a gift.  What we are doing for each other is better than any help we could receive from a neutral counselor or a brochure.  This is real life.  It's better than any public service announcement, for sure.

I know it can be hard to imagine your child or husband or wife or loved one dying.  And I know it would then seem like an insult to put them through a surgery to remove organs.  But when you see my story... and the story of Miles's family... I hope it changes your perspective.  I never thought Gavin's body represented who he was.  It was truly just a suitcase carrying the most precious cargo.  And, isn't that true for all of us?  A body is just that - a body.  It doesn't define YOU.  I hope that part of Gavin's legacy is changing people's hearts and minds when it comes to organ donation.  It will always be the proudest accomplishment of our lives that our son was able to give someone the gift of life... and was able to convince many, many others to make the simple choice to do the same.  (By the way - you may not know this, but you can still have an open casket for the viewing after organ donation.  Just so you know.)

You don't have to wait until you renew your licence.  You can CLICK HERE and do it right now.  Find your state and register - and if you do it because of this post, please post on the Chasing Rainbows Facebook Page and know that you will have our deepest gratitude.  

This is a hard day.  But it's a day that holds so much hope.

Please say a prayer for Miles!!!  And don't forget to pray for the donor family who is grieving as they are giving.  I know first hand that giving during grief does bring comfort to those left behind.

Friday, April 26, 2013

Remembering Gavin...

Brian announced today that he wanted to sleep in his brother's bed tonight.  My heart skipped a beat.  Actually, my heart has been skipping many beats and pounding hard and fast and feeling like it's going to explode out of my chest twenty four hours a day... but that's my constant anxiety.  

I digress...

So, tonight after his bath, Brian and I started the difficult task of transporting all of his Angry Birds... and his "guys"... and his special blue blanket that matched Gavin's hospital blanket... and his Penguin that illuminates stars on the ceiling and he lovingly placed them in his brother's bed.  He even asked for the special pillow case that he got to pick out in Gavin's hospital room to cover his pillow.

Ed and I sat on either side of him, as we've done since we came home from the hospital, and I read him a very special book.  Brian's teacher (that I could explain with about 100 adjectives like amazing and kind...) adapted the book "Remembering Crystal" by Sebastian Loth into "Remembering Gavin."

We have read it, on Brian's request, every night.  Somehow I am able to get through it each time... even while hearing Ed sniffling on the other side.  

 What Laura did for us - and for Brian - is indescribable.  I believe this book is helping Brian process that Gavin is really gone.  File her gift idea in the back of your mind.  If someone in your life loses a child and leaves behind a young sibling, THIS is what you should send them.  This gift means so much to us.  I was so determined to share it with all of you that it took me FOUR takes before I could do it without crying...

After the book was over and we were about to cover him with his special "Gavin blankie," he suddenly remembered that he forgot one important thing in his room.  The heart that hangs from the "invisible string" on his closet door.  He ran to his room... brought it back... hung it on Gavin's closet door... and our hearts skipped a beat again as we heard him say, "Good night Gavin," as he gently tugged the string. 
 Please keep us in your thoughts and prayers.  Managing Brian's grief is our biggest priority - but navigating our grief at the same time can be very challenging.

Thursday, April 25, 2013

The Grief Ladder & And Gavin's Godparent's Eulogy...

Grief is a tricky thing.  The days we spent in the hospital were the beginning of the journey.  One minute one or both of us were sobbing all over Gavin's little body.  The next minute we were calmly talking to doctors or nurses or the chaplain about his impending death.  Many people asked me, "How can you be so calm????" and I would always, without a doubt, feel a splash of shame on my face.  I would think, 'Maybe I'm not acting enough like a grieving Mom.' 

I was able to talk about his condition - his medical interventions - his brain damage - his organ donation - like a robot.  Devoid of feeling.  Sometimes I would feel that splash of shame again - how am I walking through this?  Why aren't I falling to the floor in a heaping mess?  

Planning the funeral kept me busy - and further from the grief.  It allowed me to focus my energies on "doing" for Gavin - something I'm so, very used to.  In a strange way, it made me happy to be "doing" for him.  It almost - even if it was just for a few, fleeting seconds - helped me forget he was dead.

Now that I've been to the other side - twice - I can confirm that there is truly no "right" or "wrong" way to handle times like this.  You're on a ride that you can't control... and can't get off... and you just have to hold on and don't let go.

The last two days have been tough.  It's all behind us - the chaos of the emergency room and the helicopter ride... the long hospital stay as we slowly watched him drift out of his body... the funeral preparations... the exhausting two days of his formal goodbye.  Now we are home and have mountains of cards and emails and facebook posts and gifts to go through.  We have Brian and school and constant questions and non stop energy and "let's do this - let's do that - chase me - read me a book - no, let's do a puzzle." We have life issues that don't pause for death - taxes and insurance issues and grocery shopping and more.

Yesterday I felt the range of emotions.  At one point, extreme rage.  Angry that my son is gone.  Resentful that I can't just be left the hell alone.  Pissed that I may not live up to expectations or be able to acknowledge every act of kindness properly because I'm drowning.  I'm drowning.

Then I felt happy.  How is that possible?  Well, when your little ray of sunshine comes bounding into the kitchen proclaiming, "I'm a rock star, Mama!  Let me play the guitar for you!!" it's kind of impossible to control that emotion.
Brian is impossible to ignore.  He makes his needs known, wriggles his way right under your grief and settles comfortably next to your heart.  It's very convenient for two parents who might have some single focused moments.  We appreciate him for that.
Brian went back to school the day after the funeral - and also today.  His teacher tells us that he did very well and was happy to see his friends.  On the first day he was back, the butterflies they had watched grow in the classroom were, coincidentally, ready to be released.  Brian was chosen to hold each of the butterflies as they flew out of their old home and made their way into the sky.  I am so, so grateful to Brain's teacher, Miss Laura, for how she has gone above and beyond to protect our son's heart during this time.  She consulted a school psychologist, she read a book on grieving, she gave Brian a book that she personalized to help him through his process (which was the most amazing gift), and she has been so, so supportive.  We can't thank her enough.

Everything is coming in waves, which I guess is to be expected.  Ed will make himself busy and want to pepper me with questions and plans and details.  He may not know that I'm about to burst and was wanting to just have quiet for a while.  We constantly need to check in with each other - be patient with each other - respect each others positions on the grief ladder.  It is too easy to take things out on the one closest to you - we are trying VERY hard to be conscious of that and forgive each other.  

And then there are times that we're on the same page.  Like last night - after watching this video:

We laid in bed together and wept.

This is not easy.  But we will not let grief swallow us whole.  Gavin is here with us, we know, and he is helping us get through this.  I think he even helped me last night by sending me some extra strength when I threw a box against the garage wall.

It felt good.

The last eulogy at Gavin's funeral was given by his Godparents... my brother, Tom, and my sister, Bean.  I couldn't have chosen better Godparents for him, truly.  
Tom is a lawyer and is so used to public speaking that he only scribbled (and I mean that literally) a couple words in an outline for his eulogy and then he delivered it perfectly and eloquently, of course. He even asked, on behalf of Ed and me, for all the professionals that helped Gavin over his 5 1/2 years (teachers, nurses, doctors, therapists, etc.) to stand so the whole church could applaud.  It was definitely a 'moment.'  All that to say, I don't have it in print. But it will be on the video that at some point will live permanently on this blog.  But here is Aunt Bean's eulogy - which was remarkable and delivered with such grace.
For many of you here today, you know Gavin as a superhero, saving lives and changing the world.  

Well, to me, Gavin was my Godson, my nephew, my sister Kate and her husband Ed’s first born son, the big brother to Brian, my parent’s 17th grandchild and a cousin to many, including my own children.

My Godson – the boy who I was to encourage in his walk of faith.   Yet, somehow, this little boy inspired me in my faith.
My faith in hope… My faith in ‘keeping the faith’… My faith in the power of love.
Gavin faced many challenges in his short life and served as an inspiration to many with his perseverance and hard work.  From the start, Kate and Ed were told that Gavin had permanent hearing loss; he may never eat without a feeding tube, may never sit up or communicate.  But we had Faith, Hope and Love on our side.  

Gavin faced his challenges with patience, courage and determination.  
In his own sweet time, with the love of his parents and brother, and the many therapists who so lovingly worked with Gavin,  he would learn to eat pureed foods,  he would sit, then crawl, stand up on his own  and just this Christmas he started walking independently!  He looked so proud of himself, too. His hearing was miraculously restored and just in the last few weeks he communicated with his teachers at school by finding and pushing the button that spoke ‘I want water’. 
We had faith in him, hope for him and we loved him.
Gavin had fun too… He rode the fire trucks and merry go round with his brother Brian on the boardwalk in Ocean City NJ. And sat up in the sand by himself while waves crashed over his legs.  He loved books, and music and everything to do with water… the bathtub, the ocean, just splashing in the kitchen sink. 
Gavin shared his love with everyone he met.  Without ever speaking a word, he was able to communicate his love with a silly giggle while playing with his Daddy, or a sweet smile to show off his dimple to Granny, with a simple touch to his mother’s face or his brother’s arm.  There is an undeniable bond of love between Gavin, Kate, Ed and Brian that will remain forever.

We can all learn a lesson from this remarkable, sweet, 5 year old  boy.  Never underestimate the power of faith, hope and above all… Love.

Thank you, Gavin!

Wednesday, April 24, 2013

In Lieu of Flowers Update...

Today has been rough.  With a little convincing, Brian returned to school, giving us a bit of a break for a few hours.  Ed started opening the mountain of cards while Sara and I started putting the mountain of items I brought to display at the funeral back in their homes.  We also started thinking about child sized urns - which we quickly decided to "shelve," so to speak, as it was too overwhelming.

But there were some highlights today!!  I wanted to update you on how much has been raised so far for our three charities.  We (and each of the charities!) are overwhelmed with gratitude.

CaringBridge has received a total of $1,537 in tribute donations so far in Gavin's name.  These donations help to keep this free website running and help patients and their families stay connected during difficult times.  And even long after, like my CaringBridge site for Gavin.  Once we brought Gavin home from his long hospitalization as an infant, I couldn't stop writing.  This is where all of my writing started and because of that I have such a heart for all of the wonderful people at CaringBridge.

The Gift of Life Family House in Philadelphia has received 76 gifts totaling $5,428 so far.  Ed and I can't wait to go take a tour of this wonderful, volunteer-run house.  Much like the Ronald McDonald house, families can stay here for a very small fee (and get home cooked meals every night made by volunteers!) while their loved one is nearby at a local hospital getting an organ transplant.  Your donations help keep the lights on, the water running, the pantry stocked and the pillows fluffed and ready for weary families.  Obviously, this is very important to us as we know first hand what organ donation means.  I can't imagine not being able to stay with my child during a hospitalization such as this - especially if we were far from home. I'm so glad the Gift of Life Family House is there as an option for families.

Nemours A.I. DuPont Hospital's Child Life Department has been happily overwhelmed.  They have received over $7,000 in monetary donations.  And here is a note from Jenn, who helped Gavin and Brian say goodbye to each other in a beautiful and creative way about the tangible items they've received (see this post for the list of needed items):

We have been extremely overwhelmed with kindness and Gavin’s spirit!!  People have been donating very thoughtful gifts.  For example, some adorable wooden beads were donated and they were not just any beads, they were butterfly beads.  Also, many copies of The Invisible String have been donated already, which makes me so happy.  Honestly, we only had one copy of the book last week and I have always wanted to be able to give this book to families when using it.  On top of these items, we have received a lot of monetary donations and it has just been so truly unexpected and amazing.  So very, very special Gavin is.  I like to think he is helping these people choose the perfect items for us.  We feel so incredibly thankful.

Also, Meghan from hope.joy.photography, who designed the funeral programs and had them printed had opened a pay pal account when people wanted to pitch in for the programs.    (She did a wonderful job and I got a ton of compliments on the programs which I will be sharing here at some point.  Please support her Facebook page using the link above?)  She collected $3,841.96 over and above the cost of the programs.  Ed and I are deciding which charity to give this to - we have some ideas and will be sure to post that as soon as we make our decision.  We are so, so grateful to be able to give this money on behalf of many blog readers who have been beyond supportive and kind to us over these last couple weeks.

And a big "Love Bomb in a Box" arrived on our doorstep today.  Feel Good Frames, after reading our story, decided to host a "24 Hour Paint For Kate" in which they would give proceeds from every frame sold to... me!  You can read about the "Paint for Kate" they did HERE - and please visit and like them on their Facebook page.  They sent us a box filled with custom frames - one for each year of Gavin and Brian's lives - that will look magnificent on our Christmas tree.  The box arrived shortly after Ed and I were discussing the funeral costs.  She enclosed a check for over a thousand dollars from her 24 hour project.  People amaze me.

And one last thing.  I mentioned before how Gene McGonagle - the owner of Ambler Flower Shop - wanted to donate all of the funeral flowers after reading our story.  I learned something yesterday that I wanted to share with all of you.  If you look at the photo from the church, you'll notice a little white angel on the right as well as branches coming out of the arrangements.  The angel was a way to honor Darcy Claire.  And the branches?  Gene came to our house in the dark of night to clip branches from the cherry blossom tree we have in our yard to memorialize Darcy.  They were just starting to bud when he clipped them.  (And as we backed out of the driveway on the morning of Gavin's funeral, I saw the first blossoms.)  Seriously... I was completely overwhelmed with emotion about this act of kindness.  Please support this wonderful human being's business and like his Facebook Page, too?  

These "In Lieu of Flowers" requests... and my birthday project on the Chasing Rainbows Facebook Page (which I am going to start really looking at in a day or two) are bringing me such comfort.  It makes me feel good to know that we are helping others during this tragic time in our lives.  So, thank you - your generosity both of spirit and dollars amazes me.

After I gave my eulogy (I had to go first so I wouldn't get too emotional listening to the others!) Miss Sara read a final book to Gavin on my behalf.  "On the Night You Were Born."  I have read this book to Gavin since he was an infant and it has very special meaning to me.  Now more than ever.  It goes...

On the Night You Were Born
Nancy Tillman

On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."
Because there had never been anyone like you...
ever in the world.

So enchanted with you were the wind and the rain
that they whispered the sound of your wonderful name.
The sound of your name is a magical one.
Let's say it out loud before we go on.

It sailed through the farmland
high on the breeze...

Over the ocean...

And through the trees...

Until everyone heard it
and everyone knew
of the one and only ever you.

Not once had there been such eyes,
such a nose,
such silly, wiggly, wonderful toes.
In fact, I think I'll count to three
so you can wiggle your toes for me.

When the polar bears heard,
they danced until dawn.

From faraway places,
the geese flew home.

The moon stayed up until
morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are
and you wonder who loves you, how much and how far,
listen for geese honking high in the sky.
(They're singing a song to remember you by.)
Or notice the bears asleep at the zoo.
(It's because they've been dancing all night for you!)
Or drift off to sleep to the sound of the wind.
(Listen closely...it's whispering your name again!)

If the moon stays up until morning one day,
or a ladybug lands and decides to stay,
or a little bird sits at your window awhile,
it's because they're all hoping to see you smile...

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again...

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.

Tuesday, April 23, 2013

Mommy's Eulogy to her Superhero...

We are home... and exhausted.  Thank you to everyone who came to honor Gavin today.  It meant the world to us to see family from all over, friends from far and wide, familiar faces and yesterday's strangers that are today's friends.  Gavin's funeral mass was beautiful.  Father Kelly, the priest who married us and baptized both boys, gave the most personal and heartfelt homily.  And we paid a special tribute to all of Gavin's therapists and teachers and aides - all of which were there and had a special part in the ceremony.  We are exhausted.  That's worth mentioning twice.  If you came and we didn't get a chance to talk - forgive us.  You'll never know how overwhelming yesterday and today were.  But we are so, very grateful that over 400 last night and another 400 today came to say goodbye to our beautiful child.  

I gave the first eulogy and this is it in its entirety - minus the shaking and fumbling and trying to remember to breathe. (You can see it on video in this post.)

First, on behalf of Ed, Brian and myself - thank you.  Not just for taking the time out of your lives to come today to honor our sweet son and older brother... but thank you for loving Gavin.  It was hard not to love him.  And it was hard not to be inspired by him.
Going to a funeral is sad.  Going to a child's funeral is just wrong on every level.  Will we leave here sad and grieving and maybe even a little bit pissed at God?  Probably.  But Ed and I feel strongly that we want people to leave here feeling mostly inspired.  Not inspired by us - or inspired by how "strong" we seem.  We want you to leave this church inspired by Gavin and his life's journey.  If we've ever been sure of anything, it is this:  Gavin was sent here to this Earth to work through us to inspire others.  To change people.  To open people's hearts to endless possibilities.  To inspire hope and healing in even the hopeless.

I feel very grateful that I have written about Gavin since he was an infant... and then Brian... and even our sweet Darcy Claire.  My online journals are, essentially, beautiful eulogies to honor all of my children.  Because of that, I don't feel the need to share specific memories or accomplishments about Gavin's short life.  

I also know that I don't have to tell you how utterly devastated we are.  How, as Gavin's main advocate, I feel incredibly empty and useless at the moment.  My identity was wrapped up in all of Gavin's many needs - and my wants for his life.  It will be a long and hard adjustment for me, I know.  We are both just heartbroken to have lost our son - and we ask for your prayers for wisdom and grace that we'll handle this in a way that will be best for his little brother.

The reason I am standing up here today is to deliver what I feel will be the most important message of my life.  I hope it will be important to you, too.

We called Gavin our "Buddha Baby" - and it certainly wasn't because he was chubby in any way.  He barely made it onto the growth chart.  We called him "Buddha Baby" because he just came with this quiet wisdom and inner peace that belied his years. Despite his many needs, Gavin was really a very easy child.  He went along with anything... smiled often... and loved everyone he met.   

I personally believe that we all come from this magical, unknown place full of wisdom and knowing. We arrive here with everything we need to know and a clear purpose set out for our lives.  I like to believe that ALL of our souls sat with God before we arrived here on Earth and together with Him created our life's blueprint.  We chose what lessons we needed to learn, what message we wanted to deliver and what our mission should be.  Because I believe that, I have a different way of looking at my children.  I am able to see them as my greatest teachers.  

Ed and I often say - to each other and others - that Gavin saved our life.  We were two single people who met late in life, set in our ways and you could say we were rather self absorbed.  Enter this child - with all kinds of mysterious problems - that coincidentally required ALL of his Mommy and ALL of his Daddy.  It was impossible to stay self absorbed because Gavin needed us.  We were the perfect parents.  Not because we were good parents, don't misunderstand.  We were the perfect parents because we were the two people in the whole world who were needing the lessons that Gavin would teach us the most.

Nothing happens by chance.  Gavin chose a Mommy who overshared in a very public way.  This little boy who never uttered a word had a very loud voice in me.  I wrote nearly every single day of his life - and shared some incredible moments.  It's not every day you hear of a child with permanent hearing loss and itty bitty hearing aids have his hearing restored.  It's not every day that three leading hospitals tell you your beautiful child will lose his eye or have a very noticeable and permanent scar after a severe corneal abrasion.  Gavin proved them wrong on both counts.  It's not every day that a child with "the lowest tone I've ever seen," said one of his doctors and who wasn't expected to be able to sit up on his own would go on to take his first independent steps just before Christmas. Along the way, I wrote it all down.  And in doing so, parents and doctors and therapists and people all over the world were changed.  Not because of my writing - but because they found hope and inspiration in this little boy and his incredible journey.  And we, as his parents, we were changing too.  I truly believe that the multitude of people that were helped along the way were all part of the blueprint for Gavin's life.  Because truly, we are all connected.

I have not had the chance to grasp what's going on in Gavin's name online - I have heard that people all over the world have been inspired by his story and doing wonderful acts to honor him.  People have been looking at me with wide eyes and saying, "You don't realize, do you?"  But in a way - I think I do.  Because I can tell you this - if people all over the world are feeling even a fraction of what we have felt over these 5 1/2 years as Gavin's Mommy and Daddy - inspired, lucky, blessed, hopeful - then my heart is full.  Gavin is continuing to change people.  Help people.  Heal people's hearts... including ours.  Choosing to donate his organs was the easiest and most difficult decision we have ever made.  Gavin was a helper and a healer his whole life.  To selfishly keep him from continuing to help and heal would not have honored him in any way.  It brought us great comfort to know that he died a hero - and that we were spreading around parts of his spirit to a very lucky recipient.  His kidneys were successfully transplanted into a young 40 year old man who recovered nicely, I was told.

As many of you know, Gavin died on my birthday.  April 14th.  Although it seems like a tragic and cruel irony from the outside looking in - I was able to see it differently.  I was lucky enough to birth this beautiful soul into this world on his birthday... And it was a beautiful gift to me to help usher him into Heaven on mine.  I knew there that his body would experience a freedom that it couldn't attain on earth.  There are always unexpected miracles along the way - even in the worst moments of your life.  If you take the time to look for them, you'll find them in your life, too.  Gavin taught me that.  I'm just the messenger today.

The message here is not "go home and hug your kids because you don't know how much time you have" - because we all do that. The true message here is don't lose hope.  And never let anyone tell you that you can't chase rainbows.  As I look out at this sea of faces, I know that each of you have been inspired by Gavin's story.  Gavin, really, was everyone's child and I was happy to share him with all of you.  But you can find hope and inspiration and important life lessons in your own lives.  In your children's lives - young or old.  In your journeys - even when the path seems impossible to walk… like this one for us.  Everything is an opportunity to learn… to help others… to grow.  Gavin taught me that.  I'm just the messenger today.  And I will continue to be his voice until the last day of my life.

Gavin Leong - the Superhero - is off to save lives.  Even still.  But the first lives he saved were ours.  

Monday, April 22, 2013

A Superhero Sleeps Here...

We made it through night one.
Thank you to everyone that came to honor Gavin.  It was a very difficult night - but so moving to see so many people who were inspired by our sweet little boy.  We were told there were a little over 400 people there.  Unbelievable.

Please pray for us tomorrow.
And the next day.
And maybe, well, for a long time.

Good night, Moon.
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