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.