Monday, March 30, 2015

Sixteen Months of Hope...

Our little wild child is 16 months today!
Coincidentally, our sweet and peaceful daughter is 16 months today!
Hope is the whole package.  She has a feisty, fun, fearless side...
...and a sweet, angelic, quiet side.  I love this about her so much!
This month she has been so much fun.  Her favorite song now is "Old MacDonald" and she tries really hard to make the animal noises!  
So far, she can do a doggie sound and a dinosaur!  Take a listen!

What's that?  There are no doggies or dinosaurs on Old MacDonald's Farm?  Oh well... guess we have work to do.  She does have other talents!  Check out her kissing and hugging her heartbeat bunny on command!

Hope loves to explore!  She has started to really test her physical prowess and there's really no stopping her.  She and Brian chase each other and laugh and laugh and laugh - and she keeps up!!  She even likes to try to play hide and seek.
We childproofed the house years ago - even bolting furniture to the wall - but never needed it with the boys.  We are so glad we did all that. Hope is the one that will think to climb onto a chair to climb onto the counter - or scale the baby gate. 
Hope loves books, just like her brothers, and is getting better at sitting still for a longer period of time - even helping to turn pages!
But, like any busy little girl - her attention span is short.  There's always something new to see or do or climb!
She hasn't added any new words - but if she does, it will be for Brian.  The majority of Hope's "firsts" are reserved for her big brother which makes HIM so happy!!  He is currently badgering... er, encouraging her to say "Baa Baa" when he asks her what a sheep says.  Hope does have her own little language, though.  Take a listen to her sweet little voice...

It's hard to believe I've spent every day of the last 16 months with this sweet little girl.  It's gone so fast - yet in so many ways it feels like she's always been a part of me.
Happy 16 Months, sweet Hope!

How We Choose To Honor His Gift of Life...

It was last year on this day that we were officially told that our beloved first born son, Gavin, was going to die.  It was an awful day, indeed... but Ed and I wanted something good to come out of this - somehow, someway.  Before we were even approached about it, we decided that donating Gavin's organs was the best thing to do.  It was the hardest - yet the easiest decision we ever made for him.  The way I describe it to people is this:

Gavin was a helper and a healer his whole life.  To stop him from continuing to help others - for our own selfish reasons - would not honor his life at all.

As you know, I feel very strongly about organ donation and I am most proud that since Gavin's death, thousands of people have registered to be an organ donor... and many families have decided to start the "what if" conversation, which is so important.  Trust me when I tell you - having to make an organ donation decision for your child in a traumatic moment is not easy - and I think most say no in that moment because it's all too much to bear all at once.  Discussing it ahead of time is key.  Please have that conversation to honor Gavin on this one year anniversary... and if you aren't registered to be an organ donor - do it today.  You can click this link (in the United States) to find out how in your state.

I entered Brian's photo in a contest on the Donate Life Facebook page.  It was "Blue and Green Day" yesterday - a day to raise awareness for organ donation... honor donors like Gavin... and give hope to those waiting on the transplant list.  The photo with the most "likes" wins a $100 Amazon gift card.  But to me, it's not about the likes... or the prize.  I want two things to happen:

I want the photo and the message to be shared as much as possible to do what the contest intends - raise awareness, express gratitude and give hope.  If we win the $100, Ed and I will add another $100 and give the Amazon gift cards to the Gift of Life Family House in honor of Gavin's anniversary. 

(***NOTE - this already happened!  We won and we gave $200 to the Gift of Life Family House!***)
Click HERE to get to the photo and "like" it on their page.  And if you are inclined, share it everywhere!

Last year on this day... 
Five and a half years ago, a tiny precious boy was born to two broken people.  He came with no instructions and a body that often failed him, leaving us feeling determined, yet helpless at the same time.  
We embarked on the journey of a lifetime with this boy.  He healed our brokenness with his spirit, he inspired us with his courage and he brought hope to families and children and educators and doctors and therapists and more without ever uttering one word.

I never in a MILLION years thought I'd be writing this.

Today, Ed and I are holding Gavin's hand as he takes a new journey that doesn't include us.
Last night, Gavin suffered another seizure and his blood pressures have remained very high, unfortunately causing more damage to his brain.

Ed and I took turns sleeping with him through the night...
...and into this morning
Even though Gavin's body is still breathing on the ventilator, we knew that he was already gone.  Both of us pictured him bathed in light and watching us.  So we spent our time reassuring him that we would be okay.  That, because he inspired us so much with his brave and courageous journey, we would continue to do the same without him.  We promised him that we would take good care of his brother... and we told him how happy we were that he would now be with so many loved ones, including his twin, his sister Darcy and all of his other brothers and sisters.

It has been an unimaginable experience watching your child decline.  Gavin now shows signs of brain death, but they need to do an official exam in two stages that will end up taking all day.  Once they declare him "brain dead," we will remove him from life support and finally get to hold our little boy as we say goodbye.

I still can't believe I'm writing this.

Ed and I made what we felt was the very easy decision to donate Gavin's organs.  It should be an unbearable decision - but not for us.  Without ever uttering a single word, Gavin healed people.  He helped people.  We loved to call him our little "Buddha Baby" for how he changed people with his quiet presence.  Sharing parts of him is like spreading good karma.  And knowing that he can continue to help and heal people after his death is so, very comforting to us.

Unfortunately, we have to talk about things like this - and even plan for a funeral.  Ed and I have decided to cremate Gavin.  It rips my heart in two to think of leaving his body in a random cemetery.  I want him home with us - right next to his sister's urn.  (If you think it's messed up to read that last sentence - it's more messed up to type it)  We will also bring a small amount of his ashes to Ocean City, New Jersey at some point.  Gavin LOVED going to Ocean City and he LOVED going into the Ocean.  He was so brave when those waves would crash around him and would laugh and laugh and laugh.  It seems right to leave part of him in a place that brought him so much joy.  We have no idea when the funeral will be, but we welcome to the viewing and church anyone who was touched by Gavin's five years of life.

Brian will be here soon.  The "Child Life" team has a lot of activities lined up for Gavin and Brian to do together - including side by side brother hand prints.  They will help us explain to him that Gavin will soon die and will be in "Heaven's House" as he calls it.  Brian often talks about Heaven and has a happy, happy view of what it's like there.  I hope today's experience will help us bring closure to Brian... and help heal our hearts as well.

There will be no miracle today.

But there will be a miracle tomorrow.  Once Gavin is set free from his body he will be able to talk and run and play.  I am so, very happy for him.

We are very, very heartbroken.  But please be happy for Gavin.  Right now... he is free.  And he will truly never leave us.  And because of his legacy of courage and hope and bravery - he will live on forever.  I'll make sure of that.  He was the reason I chased those rainbows.  I never, ever gave up on him.

Without ever uttering a word, this little boy changed the world.

Ed and I promised Gavin on this very day last year that we would take good care of his brother (and sister to be at that time!).  That is exactly what I have done - and it has carried me through this year.  I have focused intently on parenting Brian - and now Hope - well.  Gavin would be very sad if I didn't put the same energies into his siblings that I put into him and Brian when he was alive.  One of the best ways I can honor Gavin's life is to parent his brother and sister well - and ensure that they are happy and healthy.  There were definitely days over this past year when I thought that hiding under my covers or running away (not literally) sounded good... but I would remember our promise.  It was those days that I would force myself to do something extra special with Brian - and it was like the antidote to my grief.

Life has to go on - even when it hurts.

Yesterday, Hope and I spent the morning at Brian's pre-school Easter Party!  We watched him hunt for eggs with his friends...
...decorate cupcakes and make a special Easter bookmark.
I even got to watch him in his music class - and now I know how he learned all the words to the song, "Counting Stars!"
Hope even got her photo taken with the Easter Bunny!
And today, Hope turns 19 weeks!  We can't miss her weekly photo shoot!!  Today she is donning her nautical "beach attire" in honor of her big brother, Gavin.

Enjoy your daily glimpse of Hope...

Sunday, March 29, 2015

He Would Have Been Seven and a Half...

Dear Gavin,

Today you would have been seven and a half.
I wonder every single day - not just on birthdays or half birthdays - but every single day what you would be like.  I am sure by now you would be running and communicating and loving your new little sister.  Your death so young was devastating - but so was the death of your potential.  You had so much potential and I feel we were all just robbed of a beautiful, inspiring future.


Today was your half birthday.  And we chose to celebrate like we always do -  because you lived.  We are so grateful for the time we DID have with you.  So grateful.

The last time we celebrated your half birthday was when you turned 5 1/2.  We went to one of your favorite places - Arnold's Family Fun Center!  Brian was excited to show Hope around...
...and she was thrilled to explore!  I even put aside my anxiety about her touching everything.  That's a big deal!
We ended up spending the most of our time in their little playground area that has a bounce house and some climbing toys.  I know you got a kick out of watching your brother and sister jumping for joy!
The last time you were there I carried you up the high bounce house ladder, which was quite a feat.  You LOVED going down the slide.
I considered carrying Hope up that same ladder, but Gavin - your baby sister is so wild and unpredictable!  She likely would have jumped out of my arms to climb that high ladder by herself!!  So we compromised and I let her go down the playground slide all by her independent self...
...over and over and over!  She had so much fun!
Hope was so happy to explore...
...and climb on everything.  She's fearless!
Brian and I had a crazy time on the bumper cars.  He told me I was a great driver!  I was so disappointed that it was just the two of us - and Daddy wasn't there to hear him say that.  You should know that I am STILL a FAR superior driver than your Dad.  Ha!

We ended our fun time at Arnold's on the carousel.  You loved, loved, loved going on the carousel.  This was Hope's first time sitting on her own horse!
Brian was so happy - and loved that he was right next to Hope for her first ride.  
He actually chose the dog that she sat on!  Hope loves to say "woof woof" when you ask her what a doggie says.  She loves to say "woof woof" when you ask her what a cow says, too, but I digress...

After Arnold's, we went to Target.  I told Brian that if you were alive, we would have given you a toy or two for your "half birthday."  I know it made you so happy to see Brian and Hope pick out toys to enjoy instead.  Brian picked some Superhero toy, fittingly!  And Brian and I chose a Little People Farm (that looks exactly like the one I had as a little girl!) for Hope.  "Old MacDonald Had a Farm" is her favorite song at the moment!

Brian and I laughed and laughed and laughed when we got home making up silly Superhero games.  I know you were laughing with us.  I do.
Hope was so exhausted that she went right to sleep at bedtime.  But Brian, Daddy and I were pretty wound up!!  We ended your special day in your bed remembering fun stories about you.  We talked about how you loved Arnold's... the bathtub... and how every time Brian walked in the room you smiled.  We also talked about how similar you and Hope are in many ways, to which Brian said:
"It's like Hope is Gavin and Gavin is Hope!"
If only he knew how true that really is.

Actually - scratch that.

He knows.

We love you, Gavin.  We miss you every single day.  You would have been halfway to eight today!  We will never stop celebrating your life and how you changed us.

Love, Mommy

Thursday, March 26, 2015

What I Will Remember...

I can imagine the phone ringing - twenty, thirty years from now...

"Hey, Mom.  Do you remember how old I was when I first slept through the night?  The baby's been up all night every night and we're exhausted."

"Hi, Mom.  How old was I when I cut my first tooth?"

"Mom - can you put Dad on the phone?  I need a recipe."

In thirty years, I will be 75 years old.  Or young.  We have longevity in the genes, thank God.  It's possible one or both of you will be married... have kids... who knows.  But I hope that you call me... and I hope that you turn to me to ask these important questions... just so I can tell you...

I don't remember.

It won't be because of my age.  Heck, I have a bad memory NOW and I'm only (almost) 45!  I won't remember the big details of your development (unless they were written down in this journal) because I was too busy storing all the memories of the important ones...

I'll remember how I felt the moment you were born.  True elation.
I'll remember the days we spent together in the hospital - just the two of us - bonding and learning each other.

I'll remember the late nights, the early mornings and how you felt against my breast or nuzzled into my neck.  I am sure if I closed my eyes right now - I could imagine you there in my arms.
I'll remember the tears.  Yours and mine.  Some days were hard and our emotions were intertwined.

I'll remember how your body sunk into my lap or against my shoulder as we read books.

I'll remember choking back tears as each birthday ended - grateful tears that we had another year together.
I'll remember watching you from afar with such pride - so overwhelmed that you were mine.

I'll remember wiping your tears that were mixed in with mine as we stumbled and bumbled through grief.

I'll remember how you loved each other.

Oh, how you loved each other.
I'll remember how I loved your Father... and how I loved seeing the best parts of him in each of you.
I'll remember the way you smiled with your whole face... how your nose crinkled and your eyes lit up.
I'll remember death.  Your sister's and your brother's.  Watching you play and grow under a mantle with two urns.
I'll remember our life being wonderful and happy and filled with adventure and boredom and questions and answers and easy days and many, many sleepless nights.
I will remember all of these things in my heart.  And I hope, above all, that YOU will remember this...

Always remember the beauty and the pain equally... because one is born from the other.

Always remember that spending too much time dwelling on the pain, the bad day, the deaths, the tears... will only keep you in the dark.

Always remember that there will be sad "anniversaries" - but resist the urge to make them solemn and sad, just because the calendar says so.

Always remember that every day is an anniversary of a life.  Every single day you have an opportunity to celebrate love, joy and wonderful memories - all of the things that make you who you are.

And always remember that one day we will be in each others arms... all of us together.  And as your soul embraces mine I will know that I never forgot.

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