Last night, after the pronouncement of Gavin's death, I gave him a final bath. He has always loved his bath and I'd often let him stay in there way longer than he needed because he was so happy. Water in any form was his Heaven. Whether it was a dripping faucet, a bathtub, a baby pool or the big, wide ocean. Bathing him felt loving and motherly and respectful. I always end his baths with a body massage, and last night was no exception. I just wish I heard the giggles again when my hands reached his inner thighs. I then cut some of his hair to bring home. Later, I curled up next to him for our final night together. I buried my face in his shoulder and neck and tried hard to imprint his smell into my brain. I never want to forget his sweet smell. His smooth, fair skin. To me, Gavin was always perfect.
This morning when I opened my eyes and looked at Gavin, I wept. Today was the day I dreaded. The day we would leave the sheltered and protected cocoon of our hospital room and escort Gavin to the operating room.
The day we would finally leave our boy and go home.
As the clock ticked, we waited anxiously for word about matches for Gavin's organs. Soon we were given wonderful news. There was a match found for his liver. A three year old little boy from Texas. Ed and I agreed that thinking about the little boy's parents getting the news brought us such comfort... and it made us so proud. They were also working on a match for his kidneys - and told us that it was possible that both kidneys might go to one person.
The clock continued to tick and my anxiety began to climb. The thought of giving up my child's body - similar to how I handed over my sweet Darcy Claire's body after she was born - made me want to vomit. So I got busy. I made some funeral arrangements... I combed through readings and poems... and I paced.
Tick... tick... I could feel my heart beating out of my chest. I watched Ed crawl into bed with Gavin and weep. The three of us had our final group hug. The anxiety grew.
They told me it was thirty minutes until they would come up to get him. I had an idea. I quick put a call in to the Child Life department - to Jen, who was incredible the day Brian came in - and told her I needed her help. And fast. I asked if she could make a big sign for me that I could tape onto Gavin's bed. "It's kind of hokey, probably, but it will make me feel better," I told her. I explained what I wanted and she MORE than delivered.
Tick... tock... tick... the minutes passed as seconds and they were there. A whole group of surgeons waiting to take our son. I walked out into the hallway, closed the door and pointed to a picture of Gavin standing tall and proud.
"This is Gavin. Our son. He just started to walk, you know. That wasn't supposed to happen. And this is his brother, Brian, who loves him very much. Please take good care of him."
The group of them respectfully walked into our room and began to prepare him to go.
Next thing I knew, they were wheeling Gavin out of the room. We walked behind slowly and soon heard a slow clap. And as we continued down the hallway we saw doctors... nurses... respiratory therapists... aides... cleaners... all lined up. They were all clapping for our superhero. Ed and I barely held it together - between the emotion and the pride about to burst out of our chest.
We got to the double doors... and with that, we said goodbye.
Ed and I walked back to the room. I scribbled "Do Not Disturb" on paper and taped it to the door. We sat in the empty room in silence. I don't think either of knew what to do - what to feel. We just stayed silent. No beeping monitors, alarms, or the sound of the ventilator that had been keeping our baby alive. Suddenly, the silence was deafening.
We dragged our feet leaving that hospital. It was too hard. Knowing our history there... knowing we wouldn't need to return there like we used to... knowing we were leaving our child's body there and he'd be sleeping in a morgue tonight and not curled up next to me. We went to the gift shop and bought hanging butterflies to use somewhere at his funeral. And we made our last visit to the chapel. I visit that chapel and write in the prayer concern book every time we're in the hospital. Sometimes I write a request... but often times I write a thank you. Like when Gavin sat up for the first time alone - on the altar in that very chapel.
Walking into the house was so difficult. The first thing I saw was his wheelchair. Next, his shoes. On the island was the Big Mac switch that I had ordered so excitedly a week before. Gavin had just started making progress in trying to communicate. I swallowed the lump in my throat as I simultaneously felt my heart leap for joy once I saw Brian. He smiled nervously... then looked behind me and said, "Daddy?" I said yes, he was home, too! Then he said, "And Gavin??"
It's going to be hard.
We did a lot of playing, doing puzzles, hugging, hide and seek, kissing, playing and both catching up with and smothering Miss Sara with our thanks. And then the phone rang. Ed motioned to me that it was the transplant coordinator with news. The two of us got extremely flustered as we grabbed paper and pens and tried to figure out where we should go to talk. We decided to run down the basement and put her on speaker phone so Brian wouldn't overhear. Ed and I were a wreck.
The news she gave us leveled me. The news was similar to a sucker punch to the gut. She explained that the surgeons, upon removing Gavin's liver, discovered that they wouldn't be able to use it. It had a small portion that was not acceptable - which made the whole liver unusable. The little three year old in Texas wouldn't be getting his miracle tonight. We were crushed. It got worse. She told us that his corneas weren't able to be used, either.
We are holding out hope for his kidneys. Both of them are making their way out west and she said she'd update us tomorrow on the status. I couldn't help but feel so disappointed. Which then made me realize that's probably a fraction of how the people who wait on a list for organs must feel. Imagine being told they found a possible match for you... or your child. You'd obviously get your hopes up! Then imagine the crushing blow when hours later you're told it didn't work out.
They did something for us in the operating room. We requested that they take a skin sample and freeze it. Down the road, when there are advancements in genetic testing, Gavin's DNA could be used for diagnostic purposes. And it could also be used for research. Maybe his "undiagnosed genetic syndrome" will end up being named the "Gavin Syndrome" or "Superhero Syndrome." Hey, you never know.
I am trying not to get too wrapped up in the outcome of the organ donation process. It could easily shatter my heart. I have to keep reminding myself of my philosophy about gift giving. That you can't give a gift with attachments. If you give someone a gift and expect that they'll use it... thank you for it... not return it... love it... and they don't... you'll be very disappointed. But you'll also be making the GIFT about YOU. When you give a gift - a true gift - you expect nothing in return. Gavin's gift is the chance of organ donation. There's never a guarantee that it will work. Whichever way it turns out, Gavin is my hero. His death was not in vain.