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 prepare to say our final 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 with the amazing Miss Sara who we couldn't have gotten through these days without. 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.