In the beginning I could only remember the moments she passed. I could only remember the feeling of sliding down the wall in a slump, after being asked about a DNR. I could clearly remember the hurting in my heart, the physical pain, as I told her to go that we would be ok. I could feel her cold skin, not like the skin I had felt for the years before. My brain would reenact the sound of her heart that night, much slower and almost mushy sounding… not like the times I had rested my head before. I would try to remember the sounds of her breathing that didn’t have clicks in it… but I couldn’t. I would go over and over those moments, it was like I couldn’t remember before. I feared that those memories had replaced all the good ones, the ones I wanted and needed to feel. I thought I would never ever get to remember the feeling of her hair when it wasn’t matted and different. In the beginning my brain had to go back over all of this so I knew it was real. For a long time this reel went through my brain over and over and over… until I knew…
I remember still every detail of that night and morning… imagine your daughters singing their sister to heaven. Imagine leaving your daughter with nurses and driving away with an empty car seat and a broken family. Imagine sitting with your daughter for the last time… wishing you could feel her warmth again and see her smile, but knowing that her warmth and smile were gone.
I let myself remember it all this morning, I let those feelings of her cold skin and singing ‘You are my sunshine’ to her. I let myself see Amelia and Lucy singing the ABC’s and the pain in Amelia’s face. I let myself relive sliding down the hall thinking to myself ‘these hospital people asked about a DNR, don’t they know Madeline isn’t ready, she was just diagnosed… she’s not dying’. I let my heart feel that supreme empty and broken it felt when our car pulled away from the Emergency Room doors with no Madeline. I left there feeling like I wasn’t a good mom, lacking one of my girls… then I knew she was not my responsibility now she is gone. It felt like I physically lost a part of me right then… I listened to the songs that make me go back to that day and those moments.
My mind kept seeing Gabriella Miller, a DIPG angel, speak in the Truth 365 video “Talk is bullshit”. Talk is bullshit… I know in my heart that awareness will bring funding. I am getting impatient. It is bullshit. We need more, we need more people to share, more people to see, more people to understand- without ever having to really get it. I want a hell of a lot less moms and dads to know what it feels like to tell their child to go home. We need less sisters and brothers to sing their sister to heaven. I don’t want any mom or dad to know what it feels like to drive away with one less child in their car seat. I don’t want those mom and dads to make arrangements with a funeral home, to look for plots. I am sick of this… it needs to change.
Today cancer stole the last breath and heartbeat of our lovely Ryder. Ryder’s mom and dad laid with him and felt him change and transition and leave their lives forever. DIPG took Ryder’s last heartbeat, took the warmth from his skin… took his functioning and breathing lungs away. Ryder is ok, safe and happy I know it. I know that Madeline and Myles and our lovely herd of angels greeted him and he met Jesus today. I know this. I hurt for Michael and Ryder’s mom. I know what this morning looks and feels like… the empty, confused, busy and broken. I want to scoop that up and fix it… but it is part of their journey. That beautiful boy was not only loved, but he loved life. I hope his family can find joy in those memories, I hope they can get through the missing.
Today Ryder’s family joins the many others I know and love that have said goodbye and had to leave without their lovely in the car seat. Those parents go home to empty bedrooms and try to make sense of it all… they try to figure it out. Childhood Cancer is bullshit.
I want this to change, I know so many do. Let’s change this… let’s bug our politicians, let’s share these children’s journeys, let’s support the masterminds and doctors working their tails off to change this… flood Facebook with pictures of these children. Humans of New York, Truth 365, CURE, St Baldrick’s, #morethan4… flood Facebook.
I listened over and over to Ronan by Taylor Swift… her words paint the picture of loss and missing. Send love to Ryder’s herd… send peace… carry this with you on your journey, and share. Ryder and Madeline are made for big things… help those big things happen sooner.