What It Feels Like Four Months Later...

If a stranger walked into my home, they might not notice at first.  Framed photos line shelves... toys fill the playroom... artwork is displayed in the window above the child sized art table.  But if they really look, they will see the signs.  Two urns on the mantle... grief on the faces of the parents... a lonely wheelchair with the name "Gavin" embroidered on the seat sitting lonely in the corner.  And if they take a wrong turn and end up in the room formerly known as the "Dining Room" they will find a shrine. They will then realize, "Oh, somebody must have just died!"  It looks like we just got home from the hospital or the services... still... four months later.  The many photo boards sit against the wall.  The quilt that was on Gavin's hospital bed - folded on the table.  The many, many prayer shawls we received fill every chair. Mementos and cards and empty thank you notes that at this point may never be filled...

And on the floor below?  Gavin's backpack.  The backpack that should be filled with new school supplies for his first day of Kindergarten.

The first couple months were a whirlwind and a blur.  I was caught up in all the activity, allowing my mind to stay occupied - and detached.  Meals came... cards and gifts piled up on the dining room table... people met us with sad, devastated eyes - we were "the family who's little boy died."  I filled my days trying to remind myself to breathe... to eat... and worked very hard to keep Brian occupied and happy and bathed.  So many things happened... and so many things arrived... and so many people did kind things for us that it all became bunched up together and mixed up.  Now I look at something around the house and can't remember for the life of me who it was from... and if I wrote it down... and if they ever got a thank you note.  In those first couple months it felt easier to be strong.  It felt easier to answer emails and encourage the masses that wrote to me looking for a reason to be strong in their own lives. It just felt easier.

While the first couple months where a blur - the last couple months have been a brick.  To the face.

Maybe it's that Fall is around the corner.  The first hints of Fall were always a happy reminder that Gavin's birthday was coming soon.  

Maybe it's that I'm five months pregnant and, no matter how hard I try to believe - I still fear that Hope will be snatched from me.  I was 5 1/2 months when I delivered Darcy after her cord stopped acting like a lifeline between the two of us.

Maybe it's that I'm pregnant - period.  Pregnancy can bring out some wacky emotions that you just can't predict.

Or maybe, just maybe, this is grief.  The rise and fall of grief... the unpredictability of emotions... the positivity one day - the rage and anger the next - the anxiety and tears the next. Grief is tricky and, left unattended can do a number on you physically, emotionally, spiritually... and, unless you're living alone in a cave, it can seep into your relationships and threaten everything that once was.  Or continue to break what never was.*  

(**don't read into that - I'm talking generally**)

The truth is - four months later - is that I feel like I can't keep up.  I am so happy for all the eyes that are on my blog - but not for the reasons you might think.  Not for sympathy... not for attention for me... not for adulation.  Not for any of that. I'm happy because people are getting to know Gavin.  People are hopefully reading back to get the whole story and learning things that were taught to me along the way. Maybe they've needed a safe bed for their child and stumble across Gavin's Courtney Bed.  Maybe they've been struggling with feeding issues and stumble across all the great information I learned from Dr. Thompson.  Maybe they're dealing with a peanut allergy and learn more about our experience with NAET.  For all of that, I am so, so happy.

But with all the attention comes a lot of expectations.  Let me rephrase that.  It comes with a lot of what I perceive as expectations.  And I have a fear that I won't live up to those expectations - whether they are real or perceived.

Take, for example, the emails.  I do love getting your emails and I'm always extremely humbled when people trust me enough to share their very personal experiences and stories. Many of your stories just break my heart and touch me deeply. Some of you write with just your story.  Some of you write with lots of questions on top of your story.  But each of them, I feel, deserves a response from me.  I'm pretty sure that's why you wrote in the first place.  But if you could see my "flagged" list of emails that deserve responses - you might faint.  I am seriously in the weeds. And as of right now... I just can't.  There is no way I'll catch up and be able to reply to all of you.  For that, I am so, so sorry.  I feel like I have such little energy these days - I'm bone tired from pregnancy... stress... grief... being a Mommy to a very active, very talkative, very playful, very curious, always hungry little boy.  My extra energy needs to be reserved for two things right now:  my family and my rest.

There are times that people recognize me - or us - when we're out in public.  It's so awesome to meet each of you and sometimes your children.  But there's something you should know.  I'm actually pretty shy... and sometimes, socially awkward.  When you approach me, if I seem aloof or quiet - it's probably because I'm nervous.  I'm not sure what to say - what you need me to say.  I walk away thinking, "Well, they were probably disappointed."

Where am I going with all of this?  Everywhere and nowhere. I just need to write - like I do - thinking and typing and not filtering - to paint the picture of what it looks like for me.  On this day, exactly four months ago, I shockingly said goodbye to my first born son.  My other half.  My Bugaboo.  Everyone has moved on and gone on with their lives, as they should. But it's hitting me now in a way that it hadn't then.  I am grateful for the things that are helping me.  Writing.  Brian and Hope. Weekly visits with Brian to see Dr. Trish.  And soon I might be adding a grief counselor.

I've been thinking lately - because of the way I feel - do I still believe the things I said in my eulogy to Gavin?  And the answer to that is - absolutely.  Grief doesn't erase everything. I spoke these words from my heart in front of hundreds of people...

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.

...and I still believe it.

It's just that sometimes the person he is inspiring hope and healing in is his Mommy.  

And that's what month four looks like. 

Thank you for reading... for caring about our family.  I'm humbled that you all keep coming back.

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.)

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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.