Gavin David Leong...

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.