Life can change with a breath of air. I know. I’ve had the unforgettable experience of watching it happen. For four days we had to slowly and painfully watch life drain out of our four year old baby girl.
That’s how I remember the last few days with my daughter. The nurse quietly explained to us that once the machines were disconnected we would simply sit and wait. Wait till Livy’s body stopped breathing.
The scar that was left on my heart is raw and only visible by me. No one else can see the pain it continues to bring. The world has changed and life has moved forward, but the pain I feel is just as deep and sharp as it felt a little after 1pm on a December 30, 2016.
Unless you’ve been in my shoes you have absolutely no idea what it feels like. When any child dies I feel the pain tenfold. My heart hurts for the parents who will go from one day to the next with the weight of grief that comes and goes with no warning.
Sage was only two years old when Livy passed. This is the first year he’s become curious and wants to understand more about why his sister died. He want to know more about seizures and why Livy’s seizure couldn’t be stopped. He wants to know why people have seizures and why some people can live with them but his sister couldn’t. He wants to know why his sister died and I tell him, we want to know that too.
During those last four days between Christmas and New Years when we were at the hospital, Livy’s Neurologist said to us, “Livy lived a great life. She traveled, had a living family and enjoyed being in charge, but she also lived on a cliff. Having Schizencephaly and Epilepsy mixed with RSV took her over the edge.”
She also said there was nothing we could have done to prevent it.
As parents we are made to do whatever it takes to keep our babies safe, yet we couldn’t. That’s what I live with.
We don’t know why Livy was born with Schizencephaly. So few people in the world have it, which means there is less research available to understand it.
This anniversary marks a different type of milestone for Eli and I. One we wished would have taken longer to get to or could have gone without. Today we’ve now been without Livy longer than we were with her and the pain is harder than ever to bare.
Keeping Livy’s memory going brings me comfort and sharing her story and our families story hopefully brings comfort to other families managing the pain of loss. We all go on, but in very different ways.
I wish I could have fallen asleep in Livy’s bed the night before I found her having a seizure. I have so many wishes when it comes to what I would have liked to have done when she was here on earth with us. I wish I would have taken more pictures of her and Sage together.
When I accepted the position as Exective Director of CFILC my negotiation included never having to work the week off of Christmas to the New Year. I did it for a number of reasons, but mostly to give myself the space I knew I would need to make it through another year. A year where I would have to go on no matter the price or pain. Grief week, as I refer to it as, has been my time to reflect, share Livy stories, spend time with family and create new traditions because my god, that’s what the books said to do and it really helps.
The pandemic has reminded me over and over again how precious life truly is. I wonder what it would be like if Livy were here, but it also scares the shit out of me.
I’m constantly searching for new ways to remember by baby girl, but I don’t think I’ve found the perfect way yet. I want Livy to have a place, but I don’t know what that place looks like or where it’s at. I will continue to make space for her in the garden, her favorite place, but i will also continue to post memories or her and share with everyone how much I love and miss her. I am forever grateful not to have to go through this life without Livy alone. Eli, Sage and my aunt Diane keep me waking up in the morning and so do all of you.
Thank you Nina for having the courage to ask me how I’m doing and motivating me to share with everyone.