Gavin, from the second he was born, was my world. Literally. Every thought, every breath, every dream, every nightmare - every thing revolved around him. I spent my free time researching ways to help him... things we could try... doctors to stalk to get their advice... toys that would interest him. At night I would google syndromes and diseases, sure I could discover what would end up being the forever elusive diagnosis. I spent the most time with him and knew him better than anyone on this earth.
Then - in one moment - my world came crashing down.
I stood over his body in the emergency room and couldn't move. I couldn't scream. He was grey and looked...dead. Finally I got some words out -
OH MY GOD! HE'S NOT BREATHING!! GAVIN'S NOT BREATHING!!!
And then... I froze.
I went to nursing school. I had been around emergencies before. I had even been around emergencies involving Gavin.
But I froze. My son wasn't breathing and I just stood there staring at him like my love and my panic and my frantic eyes could make his chest rise.
It was only seconds before the cavalry arrived and I was pushed to the corner of the room to watch them desperately try to bring my world back to me.
When Gavin was breathing again - barely - and they said the helicopter was on its way for him - I had a moment to say to myself,
"You will never freeze again. Under any circumstance. Refuse to freeze."
And I meant it.
Look, Gavin had his share of issues. An undiagnosed genetic syndrome meant we had no idea what to call his collection of quirks. Delayed development, no speech, hypotonia, etc, etc, etc. But never, ever was "short life span" on ANYONE'S radar. Ours, especially. The biggest stressor for me and Ed was what would happen to Gavin when WE died. We saved for it... tried to plan for it... took Brian into GREAT consideration so he would never feel obligated or burdened. Never in a million years did we think Gavin would die. He couldn't die - he was my world.
But he did.
On the day people I loved would celebrate the very day I was born - the reason I was born would leave this world forever.
Gavin was dead. And I had a choice to make.
Fall apart. Die a million deaths. Freeze.
I really, truly believe that everything is a choice in life. You are born with the power to survive and get out from under anything that is holding you back. People, alcohol, food, circumstances, limitations... anything. Including the death of a child, which seems like it should be impossible to live through. It would have been easy for me to retreat into myself, start drinking again, let myself go... and people would give me a break for all of it. "Oh, she lost a child." would be the forever excuse. I have the "trumps them all" excuse, really. And I could use that any time I want.
But I don't.
I was the biggest excuse maker of them all for years. I wasted so much of my life in a "sick" state. I used the things that happened to me to stay sick with eating disorders or depression or self loathing or alcohol. The love of family and friends couldn't snap me out of it or talk me out of it or buy me out of it. I was the one that had the power of choice all along. I don't quite think I knew that at the time - I wish I had. Because once I discovered that - I didn't look back.
Now I was facing the BIGGEST crisis of my life. Even I wondered how I would manage to get through it. I was unexpectedly expecting... grieving my child... and still needing to mother a grieving little Brian.
Ed and I kissed Gavin one last time before they wheeled him into the operating room for the organ donation process. We would never see his sweet little boy body... his sandy blonde hair... his unbelievably light eyes... his happy little smile... ever again. We made our way back to his empty hospital room - scribbled out a DO NOT DISTURB sign to tape on the door - and sat in silence. What in the world were we going to do. We both dreaded walking out of that hospital without him.
It was in that room that we gave ourselves our first pep talk. We decided that our priority had to be Brian. He would be so confused... scared... looking to us to know how to act, how to grieve, how to remember - all of it. It was a huge responsibility. I knew Ed knew this way better than me - he lost both of his parents as a young boy. His Dad when he was 11... his Mom when he was 12. He knew all too well what it felt like to experience death as a kid.
We promised each other grace... acknowledging that the way I grieved might be different than his and both were okay as long as they weren't destructive in any way. We vowed that we would not let this destroy our marriage - like many before us. I mean, really - can you imagine? First Brian loses a brother... and then we would ask him to lose us together? NO way - not on our watch. We also decided that we had to celebrate Gavin's life - not overly emphasize his death. His life was so special. Too damn short, but so, so special.
I feel so proud that we have kept to our vows and promises from that day - one of the worst in our lives. It is not always easy. I know for me, I literally make the choice every single day to live my life in a way that will honor Gavin. And that will honor Brian and Hope, too. They need to grow up in their own light - not in the shadow of their brother's death or their mother's grief or anything else. They deserve to be my world just as Gavin was.
Our recent move was, in part, so we could have a "fresh start" as a family. That encompasses so many things - one of which was the deaths of Gavin and Darcy. I can understand how it would seem like an impossible choice - to move. I have talked to people who have frozen their lives from the second their loved one dies... never removing anything that was theirs, staying in the same home for fear of "leaving them behind," keeping to themselves. In my sincerely humble opinion... I feel that living this way is too hard. And I am sure - even without knowing anyone's loved ones - that this is not how they would want to be remembered...or would want you to live.
To me, moving was freeing. It doesn't matter where we are or what we do - all of our children are with us. I don't need things or places to cling to. Clinging too hard to anything stops you from moving... from dancing... from loving... from living. Really living.
We are not special people. We are not "amazing" - especially not because we are surviving the loss of a child. We are just people - living life just like you. We have happy days and bad days. We fight and make up. We are parents of the year one day and then crappy ones the next four days. All we do is try our best... and make the next right choice each day. Sometimes we get it right, sometimes not.
As for me?
I choose life. Every day.
I choose love... sent to Heaven and back to Earth.
I choose to honor my children and my husband and my life by learning to honor myself - which includes making choices that don't require excuses or come with any burdens on myself or others.
I choose to use my son's death - a death that I never saw coming - to move.
Move myself out of bed every day.
Move others with my words.
Move people to donate to help make things happen for kids like Gavin.
Move mountains to make sure Ed and Brian and Hope know they are loved and adored.
But most importantly, I refuse to freeze.
Freezing is just as tragic as death. Especially when you're alive.