On April 10th, standing helpless in the emergency room watching a large crowd of people - one on top of Gavin - trying to keep him alive... it was an out of body experience. I am used to being in control of Gavin and his care. I wanted to keep shouting things like, "Watch his left eye!" "Can someone sing Twinkle Twinkle Little Star?!?" "He's going to get a rash from your detergent ridden hospital sheet!" Totally ridiculous thoughts at the moment - but I was desperate. I felt so helpless. So useless. So vulnerable. Just an hour before we were giggling at home. What in the HELL was happening?
They told me I couldn't go on the helicopter with him - the fifteen minute flight from Pennsylvania to Delaware. I was sure it was because they thought he would die mid-flight and they didn't want a grief stricken Mother freaking out and distracting the pilot taking the entire chopper down. So sure that I pulled one of the flight team aside in the hallway outside the trauma room Gavin was in. "Please," I begged him... holding his hands in mine, "Please promise me you won't let him die afraid. Please sing to him and tell him his Mommy and Daddy love him. Please." He stared me straight in the eye and said, "I am NOT letting him die." I was trusting these strangers with my little boy - possibly with his last moments on this earth. I was devastated. And as I left Gavin's room - Ed's hand in mine - I've never felt so vulnerable.
That evening, settled into his room at DuPont - his second home - Ed and I stood in the corner two more times. Two more times that night Gavin coded and had to be brought back to life. A nurse we will never forget named Ben stood with us giving us a play by play. He told us what every beep and every number meant. When doctors would call out instructions or orders, he would translate. He was our bridge between that lonely corner of the room and Gavin's side. I hate not being there... being involved. Relying on others to explain what's happening as you are watching your child possibly die for the first... second... or third time... is the worst feeling.
The next day, I knew. I didn't want to know. I felt like I was giving up on Gavin - the boy I fought for every second of every day of his life - by even thinking it. But as I looked at his eyes, pupils different sizes... sometimes traveling different directions... I knew that my gorgeous miracle child was going to die. I kept that to myself. But as heels clicked in and out of our room all day and all night... as monitors beeped and alarmed... as I laid next to his warm body and watched his chest mechanically rise and fall... I never felt so vulnerable. This child I birthed from my body - who's life is so mixed up in mine - was gone. Alone in my thoughts, I felt a bit of peace picturing his spirit filling up the room. I knew he was allowing us time - hanging on for us so we wouldn't fall too hard and fast. Gavin has always been so, so generous.
Smiling. Crying. Eating. Sleeping. Laughing. Showering. Caring about doing anything while your child lay dying in a hospital bed feels wrong and right and confusing and bad and good. If I had a moment of laughter, I felt bad. What if someone saw me laughing... might they think I don't care? If I slept, how dare I? If I smiled too much would I not appear "enough" like a grieving mother? It is the strangest experience to be so, deeply involved 24/7 and be "on" for nurses and doctors and visitors and clergy and... each other. If anyone came to visit, we comforted them. For me, it was easiest to go into my "zone" of wanting to know everything about what was going on medically - just as I have so many times before with Gavin. The entire hospital experience - being in a fishbowl - is a very vulnerable feeling.
My heart has never been so bare as it was preparing to leave his body. I've never left Gavin. I once lived at DuPont for months, refusing to leave his bedside... sleeping on a "civil war-era metal cot" every night. When he would have any procedures done - especially if they were painful - I insisted that I always be there. I wanted him to always see my eyes - know that I was there. I would put my face right above his and sing to him - trying to calm him and comfort his fears. I knew the day was coming that I would have to leave his body at that hospital and my heart was just laid bare. No one could ever know how that felt for me... after all that Gavin and I endured together as a team. No one.
Sara and I went to the Mall one evening - my LEAST favorite place to be - to shop for my funeral clothes. As the salesperson brought us to a fitting room I wanted to blurt out, "My son is dead." When I paid for my blue dress I wanted to tell her, "It had to be blue - you know, for my son's funeral. My son died. He was 5 1/2." I felt phony walking around a mall - caring about clothing - so, incredibly vulnerable as people passed us in blurs of color living their lives unaware. I didn't want ANYONE to be unaware of Gavin. I still don't.
Standing at the front of church, greeting friend after family after stranger after friend - 800+ in total - I felt naked. And like a fraud. "You're so strong!" I heard over and over. I wanted to say, you must not have heard about my 'heated conversation' with God last night. "You're handling this with such unbelievable grace!" was another common theme. Rest assured, most true 'graceful' people don't shout obscenities as they throw cardboard boxes against their garage walls. At least I'm pretty sure. To appear to be one thing - and feel like a completely different thing - is a very vulnerable feeling.
Since April 10th, the outpouring of emails and comments and Facebook posts has been overwhelming. I feel confused and honored and grateful and nervous about all of it. I've always written just for me - it's my outlet, my therapy, my everything. People have been accidentally helped along the way and I'm glad for that. I've never set out to be anyone different or set myself up as anything other than a very flawed Mom who writes about her life with her kids. As a people pleaser, I feel compelled to read every note and try to respond to everyone. Part of me feels happy to do that - I love to help. I really do. But part of me also needs you to picture this: Picture a woman lying on the floor with her heart hanging out - blood everywhere. It would probably not be the best time to ask her too many questions or ask her for advice or wait for an answer or expect to get logical direction. Actually, it's probably wise to never ask me for directions... not my strong area. Or recipes. With so many people reaching out to me - I feel panicky. I am sure that I will miss someone, hurt someone's feelings, overlook something, forget to thank someone, forget that someone did something at all... it's overwhelming.
To have so many people's eyes on me now is a ridiculously vulnerable feeling. Strangely, seeing my life written out on Momastery yesterday did NOT make me feel vulnerable. It actually made me feel free. Those closest to me knew all of this - they lived through a lot of it. To get over a hundred emails with beautiful and personal and heart wrenching and "me too" stories solidified my feeling that it was the right thing to do. However, to get emails and comments from people that seemed to put me up on a box (not even a pedestal) saying I was 'inspiring' or they had such 'respect' for my way of looking at things... I wasn't sure about that. I had to call my Mom and say, "Do these people realize that this is the same person that was involuntarily committed 26 years ago?" It's hard to reconcile.
Now that life is moving on so rudely... and spring is springing outside our windows... it is getting tougher. I have to muster up the courage to go to Gavin's school... to see his cubby with all of his things... to hug and thank everyone who has meant so much to him and to us. I have to take on the challenge of gardening - finding the perfect spot for Gavin's funeral hydrangea plants, a butterfly bush and a gorgeous stone bench which was gifted to us by Ed's work colleagues. It is inscribed with "Those we have held in our arms for a little while we hold in our hearts forever." This will be a daunting and emotional task. I need to tackle the piles of cards and gifts and pictures and memories that are forming a mountain on my dining room table and try to make sense of it all.
How do you make sense of anything that doesn't make sense to you?
There are big changes around the corner, too. Tomorrow is our beloved Miss Sara's last day working here which will be a tough transition for all of us. She's not leaving us forever - she is deeply ingrained in the heartbeat of this family. As a matter of fact, we have decided to get the hell out of dodge as part of our thanks to her. At the end of May, Ed and I are whisking Brian and Miss Sara away for a trip to Disney World for four days. Ed and I were counting the days until we would take Gavin and Brian for their first Disney Trip. And we knew that Gavin would enjoy it more than all of us - the rides, the music, the energy. We will be bringing him with us, in spirit, but it does break our heart, too. We're using points, miles, and the help of my friend Danielle who is a "Magical Memory Planner" for Disney. She's planning out our whole trip. We pretty much have to just show up. (This is, remarkably, a free service that Disney offers. Check out their Facebook page and ask for Danielle Wann if you're planning a Disney trip! She is a total 'insider'!)
I will also need to figure out how to fill my time. Time that was often wrapped up in research, planning, fighting, phone calls, therapy... and love. It was all done with so much love for this child that was my life. He really was my life. The thought of just going on without him as part of my every day is such a terrible feeling.
If I were to write all of this down - a list of feelings - perhaps the one at the top of the list would be "Why." The title of the list would be "Things that make me feel vulnerable right now." I just need to know why. On Gavin's death certificate it reads:
Enter the chain of events - diseases, injuries, or complications - that directly caused the death:
Undiagnosed Genetic Condition
Enter other significant conditions contributing to death but not resulting in the underlying cause given above:
Undiagnosed Genetic Syndrome
Were autopsy Findings available to complete the cause of death?
We asked them to take and freeze a sample of Gavin's DNA. When there are advancements in genetic testing (he's already had every test offered) maybe we will finally crack the Gavin code. And maybe it will spare another family the heartbreak of a sudden and unexpected death such as this. And I'm still holding out hope that the final results from the autopsy (which can still take weeks to come back) will shed some light onto why this happened. The day before, I was racing for the camera because Gavin was "dancing" independently for the first time ever.
And that next evening, I knew we were losing him.
I'm not sure I will ever understand why.
But I do know - and have known since his birth - that Gavin is a very special soul. He was, without a doubt, sent here on a mission. And based on what I've seen and heard - and the amount of people and lives that have been touched and changed by his story... he more than accomplished his holy work.