It’s been nearly nine months without Louie. That’s almost as long as it took to create him. The highlight of each day; knowing one more has passed. One closer to no sadness although I’m desperate for the months and years since. My life is distilled into three parts. Nothing. Louie. Back to nothing.
I dreamed a few weeks ago that I was sitting, and Louie walked up and let me hug him. I could feel his warmth as I squeezed his thin body. I awoke feeling like he was there, somewhere. After he died, I hugged him until I absorbed every last bit of warmth. No longer the comforting hug after hurt feelings or a fall, but a hug trying not to let life escape. I swept every tear that left my eyes in his hair. I didn't think of it as giving him my sadness, rather my love.
I walk by his empty room, it’s perfect. His favorite hoodie and the tee he wore during his last breaths, washed and folded at the end of the bed. The only thing missing is Louie. I clean his room, dust it and sit. Sometimes I read one of his books and recall the hours, years, I spent getting to know him. I think of all the empty rooms in this word cancer has left unoccupied. How many parents tip toeing past hoping not to wake their kids, desperate for 5 minutes of peace? How many parents, screaming at their empty rooms for their children to come back? 5 minutes of life.
I miss him so much it feels claustrophobic. I want him back so desperately.
I never took being a mom or Louie for granted for one second. I, we, wanted to spend every minute we could with him. I tagged along on playdates. I was addicted to him. I spoke through him, around him. We’d cower in the corner at parties enjoying each other more than we did everyone else. We had antics between us, we totally got each other.
When he was a baby, I would watch him sleep and cry. I’d tell my husband “I don’t want anything bad to ever happen to him”. We let him down. He went through 2 years of essentially torture for nothing. Sometimes his spirits were good, and we worked really hard to have enjoyable, even fun moments. But those parents who say their child had a “smile on their face every day” must be liars. When your child won’t eat and you watch a feeding tube shoved down their nose. When everything they do eat makes them sick. When they are so listless they roam from one room to another, from one movie to another. When they awake at 2am and you read to them and would never sleep again if it meant they were comforted. When your child is wheeled back for surgery, to be gone for hours and you watch their eyes as they move away, they seem so brave, even if for your comfort. When you wait for them to wake, only to proffer the next round of pills. When you can’t tell him that all hope has escaped and can only say you’re giving his body a break, time to heal. We failed Louie. He trusted us, did everything we asked, and we failed him. If I told him he could skip a pill, even a vitamin, he would firmly say no. He wanted to do anything to live. “Sometimes I want to give up” he looked at me and said once, “but you won’t let me”.
With no other children, there is no reason to feign joy. I could live my life in isolation and it would likely go unnoticed. Self-absorption must be at an all-time high. I can’t bear the social media reminders of the tedious and boastful. Everything I do is forced and coerced. What I want more than anything is to do nothing, to be nothing. When your child is your everything, and they die, what you’ve left is completely meaningless.
We cling to each other, the only two people on earth that share this story, this love, this loss. I look at images and can recall what transpired on those days and I’m almost there, in that moment.
But as we approach these next months and those memories, Louie feels so distant. Everything has progressed, everyone has moved forward. And we’re still here, wishing it hadn’t. Only once has someone asked if it’s gotten any easier, one of Louie’s doctors. Losing children must be what working late or giving a bad presentation is to the rest of us, a rough day. No, it hasn’t gotten easier. And waiting for it to get easier is like shrugging off the meaning of Louie’s life. I’ll let others evangelize about strength and resilience; it seems so forged and aspirational anyway. I’ll sit aside, help others when I can, busy myself with just enough, sleep a few hours and wait for another day to pass.
"Nobody has ever measured, not even poets, how much the heart can hold." -Zelda Fitzgerald