Monday, April 14, 2014

What It Feels Like One Year Later...

Last year on this day our beautiful son died.  This is what I wrote as we sat in his room bathing in grief and disbelief and sorrow...

Gavin David Leong
September 29, 2007 - April 14, 2013

Our sweet son was officially pronounced dead at 9:53 this evening.  Today was the hardest, most heart wrenching day of our lives.  It was also a wonderful birthday gift to me - to know that I could birth this beautiful soul from my body on his birthday... only to usher him into Heaven on mine.

Ed and I were able to hold him this afternoon - after four long days.  I was so, so happy to have him in my arms again.
We are still here with his body.  Loving him and crawling into bed with him.  Singing to him and telling him stories.  The love we have for this child is overwhelming.
We have to wait for the organ transplant team to be ready and in place.  Surgeons could be flying in from all over the country for the precious organs that Gavin is sharing so heroically.
Once they are ready, they are allowing us to escort Gavin down to the operating room.  It could be in the middle of the night when we're called... or it could be in the morning.  Whenever it is is fine with us.  We consider it a privilege to wait.
Knowing that our son will die a hero - saving or enhancing lives - it's a privilege for us to wait.  Not to mention, we're really not in a hurry to leave him.  He will be kept on the ventilator only to keep his heart beating while they harvest the organs.  Although it sounds horrible - he truly is not alive.    The heart needs to continue beating to provide oxygen to the organs so they stay perfect for the people who are anxiously waiting for them.  I can picture a parent sitting at their child's bedside tonight hearing from their doctor, "We found an organ."  If they only knew that these are organs with super powers.  If they only knew.
Leaving the hospital without our son will be hard on our hearts.  We are anxious to see Brian... but nervous to walk into our home, which is filled with Gavin's things, and try to stay upright.  It's going to be hard.
I will soon be revealing the details of two special places that we would LOVE donations to in honor of Gavin (and in lieu of flowers) for those who were interested.  

But before that, I have a special project that ANYONE can do - that can be FREE - and would be the best birthday present you could give me.  Here is what I posted on my Facebook page first thing this morning:

Ed and I will be announcing our choices for "in lieu of flowers" donations to honor Gavin in a few days, but today is my birthday and this is all about me. I've come up with a special, totally FREE way to honor my sweet son who could inspire the most profound emotion without ever saying a word. I'm asking you to help someone... document it with words and or a photo... and place it on the Chasing Rainbows Facebook Page. Then be sure to check the page often to get inspired by the outpouring of love. Here are some great ideas for you... Find a special needs classroom in your community. These are usually low funded and always looking for donations. Perhaps you have toys your kids don't play with anymore that could be used in the classroom or during therapy. Random crayons that are laying around. I know we always needed rug gripper to place under Gavin's behind when he sat - that's a good need. Do you know a special needs Mom in your neighborhood? Church? School? Tell her you'd like to make dinner for her family. What night would work? Then tell her the only requirement is they have to give a "cheers toast" to Gavin during dinner. Help someone struggling to unload groceries into their car in the rain. Donate clothes to a women's shelter. Check with your local children's hospital for volunteer opportunities - even if it's just for two hours of your life. Save all of your magazines and bring a big stash to your local hospital. You have no idea how helpful that is to parents who spend days, weeks or months (as I did when Gavin was a baby) sitting in their child's hospital room. These are just some ideas... be creative! And think of Gavin when you do it. Share his story with the person you are blessing. Tell them that Gavin Leong changed the world with little acts of courage, determination and a sweet smile... without ever saying a word. And then ask them to pay it forward to honor his legacy. This would be the best birthday gift you could give me. There is no time frame - you could post something today or a year from now or five years from now. Thank you for helping me to honor my amazing little boy. And feel free to share this anywhere you want! 
If you don't have Facebook, don't fret.  You are welcome to share your story here in the comments or email it to me with a picture.  The idea really took off today, I was told.  It was shared all over the country...and the world.  I'm so grateful.

Today has truly been the worst day of our lives.  But it's also been an unexpected gift. Our beautiful first born son was set free.  Now he can talk.  He can run.  He is healed.  As we kissed him goodnight and wished him sweet dreams one last time...
...we realized just how lucky we are to be Mommy and Daddy  to this courageous superhero boy.

Life will never be the same. 

As we sat there that night, and into the next day, we could never have predicted the year that would follow.  And we could never have predicted how we would feel on year later.  I was sure that I would try hard not to let my grief bury me.  And I was hopeful that I could remain my positive self and be a healthy mother for Brian (and Hope, who was just a whisper at that time).  But you can never predict how you will handle grief.  I have thrown boxes in the garage with rage in my heart.  I have raised money to help children like Gavin with hope in my soul.  And I have birthed a child - dropped straight from Heaven - with gratitude to God.  This year has been unimaginable in so many ways.

Today was a day that many would dread - the one year anniversary of the day he died.  It is also my 44th birthday.  To be honest, I think I dreaded turning 44 more.  Ed and I agreed that we don't feel any different on this "anniversary" than we did last week... or last month.  We will grieve for Gavin every day, forever.  So today, like every day, we chose to celebrate Gavin... and celebrate life.
We took the kids to see the Easter Bunny!
Brian was very excited... and Hope wasn't scared at all and looked adorable in her sweet, pink dress!
We had ice cream for lunch!  
(Okay - it was after lunch, but it sounds much more rebellious to say FOR lunch.)
Next, we took a very special trip to the Saint Katharine Drexel Shrine.
Brian knows that we brought Gavin here as a baby when he had hearing loss.  That we said special prayers to God and to Saint Katharine Drexel to give Gavin his hearing back.  And that it worked just in time for Gavin to hear Brian after he was born!  We have brought Brian back here with Gavin several times... but today was Hope's first time.  She will grow up knowing all about this special place.
This is just where we knelt with Gavin when he was an infant.  Brian and I said a special prayer for him right there today.
Brian lit a candle...
...and even wrote special notes to Gavin to place in the "intention basket."
Brian is such a special, thoughtful little boy.
We made our way into their beautiful (and I mean beautiful) chapel.  Hope had "had it" at that point and wasn't interested in any more photos.  It gave Brian and me a moment to chat.

"This is a really special place to Mommy and Daddy.  Do you know why?" I asked.
Brian replied, "It makes you think of Gavin and how he couldn't hear but then he could."
"What did you like about being here today, Brian?"
"Saying a special prayer for Gavin." he answered.
"Do you think Gavin heard our prayer?"
"YES!!  And it made him HAPPY!" he exclaimed!!
I'm so glad we chose to celebrate my birthday and Gavin's one year anniversary in this way.  It was very special.

I arrived home to find a beautiful blue hydrangea, just like the ones we had for Gavin's funeral... and then planted in a memorial garden in our back yard... from my sister, Bean.  I'm hoping that I can successfully plant it in the yard.  It will always remind me of the love that Gavin's Godmother will always have for him.
And I also had a gorgeous bouquet of tulips from my sister, Meg, and my brother in law, Greg!  I love tulips so much.  They remind me of the emergence of Spring.  The promise of hope.  The beauty of life.
Gavin, we will hold onto hope... celebrate our eternal love for you... and we will always, always celebrate life.  
And this is what it feels like one year later.


  1. Such a beautiful way to celebrate your birthday and such a beautiful way to honor Gavin. Love that you wore your Gavin shirts in your family picture. Brian and Hope are so cute with the Easter bunny and the rainbow in the picture of Brian and Hope on the bench.

  2. Kate, what beautifully written words for the day sweet Gavin was ushered into Heaven. Your family and Gavin have been on my mind all weekend. I remember this time last year I started reading your blog and have been following you ever since. I want to wish you, Ed, Brian, and Hope all the peace and love in the world and to never forget to appreciate the little things, which I know you do. I hope you had a very special birthday and what a beautiful thing that you were able to bring Brian and Hope back to the shrine where you prayed for Gavin many times! He was and is such a sweet, handsome little boy and I wish I had the opportunity to meet him but hopefully I will get my chance one day. Wishing and sending you all love and prayers. And Happy Birthday again, what a beautiful, special day to celebrate. Like your cake says always celebrate life!!! Lots of love from NJ!!

  3. I love the rainbow of light shining down on Brian and Hope on the bench. He is always around you. I was looking for orbs in your photos but didn't see any... I wonder if there are some in the other pictures your took. Happy birthday blessings. Your strength and willingness to share your journey are remarkable.

  4. Kate, I started following your blog the day Gavin went to the hospital. You and your family are often in my thoughts and prayers. At the age of 53, I am going back to school to become a child life specialist. It all started with your blog posts after Gavin died. At the time, I was so touched by the things the child life center did for your family. Then I forgot about it. Through a long list of circumstances I remembered your posts and went back and reread them last week. That's when it hit me. That is what I want to do! I expect it to be hard going back to school at my age, but the thought of you and Gavin will keep me going! Thank you for sharing your journey with us. Your words and Gavin's sweet spirit have touched and changed countless lives. Blessings! Happy Birthday!!

  5. i'm in tears. i'm so sorry you lost your baby boy. as a mommy of two baby boys my heart aches for you. as an organ recipient you are my heroes. i'm on the list currently waiting for my second transplant (my first was four years ago)

    i just want to send you a hug. i'm so sorry, but glad your son is now free from pain. crying. i want to say thank you. i'll hug my boys just a little bit tighter tonight, with more gratitude in my heart.

  6. What a beautiful tribute to a precious angel boy!!!

  7. Such beautiful beautiful words and an incredible way to honour your perfect son. Xoox

  8. RIP Gavin, you've touched millions.

  9. I cry for you for your loss, but I know Gavin is free and can talk and do so many things now that he is in Heaven. I read your blog and am amazed at how you can hold up and talk about Gavin. As we all know, we do have a choice: To move on or to wallow in our sorrows. You have chosen the higher path. Prayers for comfort and peace.


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