Written by Stephanie Merfeld, mother of Adrian. Adrian passed away two years ago on July 12.
Sometimes, social media is not so nice. I love that I can check on my friends and family and look at cute cat videos, but once you are in the childhood cancer world you can’t leave.
Even when you no longer need to be in that world, you cannot help but know what the hell is going on.
It’s like the movie The Matrix and the pills. I want the pill in order to be ignorant again. I don’t want to see even one (some days it’s three or four that I follow) of the seven kids that die every day. But, that is my life.
I see a child cross my screen everyday who has died from cancer or its horrible complications. I see others added to the support group page every day. I see others still fighting, and I realize I still want to be fighting.
Then, that would mean I could comfort my child.
I could hold my child. I could laugh, scream and shout with or at my child. It sounds weird to say it, but I wish my child was still fighting cancer.
You see, I found a comfort in this fight. After fighting three years, nurses become your family. Clinic becomes a home.
I knew what was happening. I knew how to handle any situation thrown at me in this fight. I could have been his caregiver forever. I was good at being his caregiver. I could pack a hospital room in 15 minutes. I could wake from a sleep in seconds with the smallest of whispers: “Mom.”
What I haven’t figured out is what to do next after my son died. It’s been two years. We parents revert back to the system of counting months after the death of a child.
It is 24 months, 24 months since I have felt his hand, his breath, his love.
I can’t go back to normal. There is no normal after any diagnosis of cancer. There is really no one who gets you except other moms who have felt this.
I have friends who say, “You are so strong; I could not carry on.” I have other kids I show up for, but I wonder if I am failing them because I can’t get off the cancer roller coaster.
I know too much. I can’t just get off the ride known as childhood cancer. I have to fight, still, for other children. I have to stand and be counted as a Warrior Mom.
I wonder if I stop fighting, if others will forget my son even existed. I fight in his memory so that I can still say he mattered.
I move through each day. That’s it. I move, I put my feet down – I just move. I smile, I laugh and I try to get my kids where they need to be. I go to their school or sport events and make the right noises. I even work one day a week. I am terrified to add more days.
I don’t like people and public situations anymore. I don’t want to be that parent at the party…. Oh how many kids do you have? Do I say three do I say two? If I say three, the question then goes to “Oh how old are they?” If I say two I get the same question, but I feel like a traitor for not including him. If I include him, I have to say “He is forever 12. He died of cancer.”
The blank faces I get, the pity in their eyes is enough to make me scream. Inevitability, the person just wants to go find another person to talk to. I have just become the ‘Debbie Downer’ of the party and no one wants to talk to me.
You see, if we were still fighting, I could talk about cancer, and it being underfunded, about new treatments, old treatments, remedies for the chemo complications, and I could be happy.
I was happy fighting, because that meant he was here.