Monday, March 30, 2015

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...


  1. After reading your post a year ago my husband and I discussed donating organs should the unthinkable happen with our son. It was hard to talk about, but we made the decision to donate. Thank you, Kate for giving me the courage to talk about it. Its not something a parent should ever have to do, but knowing my husband and I are on the same page should we be in that situation gives me a bit of peace.

    I love the outfit Miss Hope is wearing. I may be a bit biased though. Its the outfit my 11 day old wore to come home from the hospital.

  2. Kate, I started reading your blog a year ago and have followed your journey of grief, pain, joy and hope all along this past year. You are constantly in my thoughts and prayers. Our good God has plans for you...and someday you will meet your precious boy in Heaven. Much love.

  3. Happy birthday Kate. You are an incredible person and inspiration to all mothers.

  4. I can't believe it's been a year. I am glad that you are celebrating Gavin on this day even though the memories are so painful. That picture of you lying in bed with him at the hospital breaks my heart every time I see it. Love to you and your family.

  5. Happy Birthday to you KATE! What a roller coaster ride this last year has been for you! And Gavin has been with you every second of every day. None of this would have been possible without Gavin! Hope is changing DAILY, but still precious, and BRIAN, what an awesome brother. Brian beams when he looks at Hope! Prayers for you and your family. God Bless.


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