That's What I Miss...

Last year, on the eve of my birthday, I wrote this entry...

*****

Gavin has been a mystery to everyone but God his entire life.  He has consistently baffled doctors... geneticists... and defied many of the odds that were routinely stacked against him.

So it shouldn't surprise us that Gavin's final moments are also a mystery.  Last night he had the second of the two brain death examinations that they need to do to officially declare him "Brain Dead."  The first was a physical exam and it was positive for brain death.  The second was something called a perfusion study which measures blood flow to the brain.  The radiologist saw minimal blood flow to his brain - which means they couldn't call a time of death.

We were all shocked.  Our mystery boy... at it again.

Make no mistake - Gavin is gone, for all intents and purposes.  He's not in his body - we can tell.  The doctors assure us that he has profound brain damage with no chance of recovery.  The "minimal blood flow" is not a hopeful sign by any means.  

If you're heart just dropped and you are thinking, "Crap!  I wrote to her and said I was sorry he died!" or "Oh no - I wrote on Facebook that he was now an angel!"  It's okay.  It's fine.  The Gavin we know physically is not here. He's on his way to Heaven... but just not technically there yet.

So, we wait.  We are patient.  We love the extra time with our sweet child's body and we know he is not in pain.  We are sure he is not scared.  And we are positive he knows that we love him and will be okay when the moment comes that he decides to finally go.  We reassure him all day and night.

Last night Gavin and I slept together in his bed.  They had a warming blanket on his body because his extremities were ice cold due to poor blood flow.  The blanket helped him a lot - and it helped me, too. The nurse put a lullaby station on the TV and as I snuggled with my sweet boy, his little life played like a movie in my mind.  It is obviously easy - with only five and a half years with him - to remember every detail.  I can almost feel his infant body on my chest as we paced in his nursery or rocked in his chair.

Laying next to him and holding his hand through the night made me so, so happy.  Then I heard it.  Our special song came on the station.  A song that I sang to Gavin every night and whose words mean so much, they always have... but more now than ever.  Listen...

never thought that in a million years

never thought that you would come to me 

you're the answers to a million prayers.

you're the apple of my eye.

i can hear you breathing next to me.

just how lucky can one person be?

i am looking at a mystery

everything i dream, more than i can wish for. 

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby you're my little ray of light

i could find you in the darkest nights

if you cry then i will hold you tight

never letting go, i would do that for you. 

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby i am here

baby i am here

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

I sang along in his ear and then released so much grief onto his pillow.  This is so, so hard.  Unbearable.  Unfair.  We have been robbed.  I'm angry.  I'm devastated.  I'm scared.  

His organs are still being preserved with the medications he is on, but his kidneys, unfortunately, seem to be slowing down.  They've given him lasix, but it's not helping - and he has developed edema everywhere.  His sweet little hands look like they may burst because they are so tight with fluid.  Even parts of his inner eye are swelling.  It's heart wrenching to see.

Donating Gavin's organs is so important to us - and we know it's a way of honoring Gavin's legacy.  If you didn't know him or realize how he touched people lives, just look at the outpouring of comments and Facebook posts and blog posts about him.  People have been inspired by him over the years - and continue to be inspired by him now - and I know in my heart that, even in his death, that won't change. Knowing that he can save lives with his organs means the world to us and brings us a great deal of comfort.  And I'm grateful for the mail I've received (that I've been able to read so far - I'm drowning in mail and comments and more) from families that have someone they love on the list waiting for an organ.  Or people who have received organs.  They all want to thank us for even wanting to donate our child's organs.  And they tell us that just the fact that we made the decision brings hope to them that one day, their child's life might be saved.  

So, we wait.  We know that Gavin will tell us when he's ready and we will respect that.  Tomorrow is my birthday.  I will be 43.  People seem so worried about this happening on my birthday.  But I will tell you, releasing Gavin from his body... and knowing he is free... would be the greatest birthday gift I could receive.  

All his life I searched for answers.  I was determined to heal him, "fix him," make things better for him.

It might not be happening the way I expected... but I guess one could say he will soon be healed.

Thank you, from the bottom of our hearts, for loving our family during this awful time.

p.s. We obviously can't make any plans until we have closure here at the hospital for those of you wondering about funeral arrangements.  We are hoping to have the funeral at Epiphany of Our Lord Church in Plymouth Meeting, but that's not certain yet.  This is the church where Ed and I were married and both boys were baptized.  And we are working on an "in lieu of flowers" project that would be meaningful to Gavin and our family.  Stay tuned...

*****
It's hard to describe the feeling of knowing that your son is going to die.  That night was awful and I was so grateful to have spent the last night curled up next to him in bed.

Here I am again, on the eve of my birthday.  I once again will go to sleep with Gavin on my mind and heavy on my heart.  I wish that I could go to sleep tonight and wake up tomorrow and find out this was all a crazy nightmare.  What a plot twist that would be... if only.

This weekend, we went to the beach as a family to celebrate Gavin.  We stayed in a hotel (Gavin loved that!) and we went to Ocean City, New Jersey (Gavin's favorite place!).  It was a beautiful weekend, weather wise, and we had a lot of fun.  Here are the highlights...

The first order of business was to go to "Gavin's Pier."  

We have yet to explain cremation to Brian - and he has never asked about what happened to Gavin's body.  We know we will know when the time is right - and if he asks, we will be honest.  It is a very heavy concept for a five year old so we are being very thoughtful about not overloading him with too much information unless he asks.  He knows that "Gavin's Pier" is special because all of their beach memories together are on that beach. 

 Hope's first time on the beach was great!  She was calm and peaceful and seemed to just love it.  

I think it's going to be a great summer.  

It was on the beach that day that Brian asked me out of the blue, "Do you think Hope is going to die, too, Mommy?"  

 Clearly, he is feeling the loss of Gavin.  It makes sense for someone his age to project his fears and assume that others are going to die on him.  But boy, some questions are hard to answer.  

We hung out and watched as Brian played in the sand.  

Ed and I smiled when Brian shouted from under the pier, "I found a ladybug!!"  

I don't know that I've ever seen a ladybug on the beach!  And Brian found THREE!  

Maybe it's completely normal and it happens all the time, but we saw it as a little sign from Heaven that right at that moment... Gavin was there.  Actually, I thought that maybe Gavin, Darcy and my Dad were all there.  

As we were dumping sand out of our shoes back on the boardwalk, I asked Brian,

"What do you miss about Gavin?"  

"Coming to the beach with him.  That's what I miss," he answered.  

We spent the rest of the day on the boardwalk, which would have THRILLED Gavin.  He loved Gillian's Wonderland Pier - and had so much fun on the rides.  So that's just what we did.  Hope stayed warm with Daddy while Brian and I raced from ride to ride.

We took his very first "roller coaster" ride together.  

He laughed his way around the speedway.  

He sailed in circles, smiling the entire way.  

And, of course, we visited Gavin's fire truck.  (No babies were harmed in this photo shoot.) 

If you remember, the owner of Gillian's Wonderland Pier named this fire truck after hearing of Gavin's passing.  That number 8 truck was the one that Gavin rode for the first time independently.  We were so touched by the Gillian Family's gesture.  And this year, they are at it again!  

The Gillians contacted me when they heard about "Gavin's Playground Project" and wanted to help.  Besides donating VIP tickets for the silent auction, they asked if the playground project could be part of one of their "Magical Mondays!"  Every Monday in the summer is "Magical Monday" where patrons can purchase a wristband for $20.00 and ride unlimited rides from 1-4pm!  Half the proceeds go to a different charity, organization or family in need each week.  So Monday, July 14th, the beneficiary of "Magical Monday" will be "Gavin's Playground Project!"  I am so excited - and so touched that they would (once again) honor Gavin in such a special way.  I hope to see many of you there!  We'll be there for sure!

Thank you for loving our family through this first anniversary.

And thank you for loving Gavin and helping me to keep his memory alive.