A fellow trisomy loss mother described herself as an “alien” today. It resonated with me. Ever since James died, I’ve felt like I’m standing outside of my life, observing it but not really participating. It’s as if this person, the one that is doing the care packages, the Cuddle Cots, the scholarships, going out with friends and family, reading books, hosting a radio show – she’s one Catherine – the fake Catherine. The other Catherine is the one really running things, and she’s asleep at the controls.
Everyone told me that the six month anniversary is when the wheels come off the bus. For me, it’s been closer to the seventh month. For some reason, it’s just hitting me again, like a load of bricks, that my son is dead. He is gone, forever. That little bright-eyed boy that I watch in the videos, he isn’t here anymore. I’m sure it’s related to his birthday. It’s also related to the fact that we finalized his headstone a couple of days ago and are working on his grave in preparation for his upcoming celebration of life. It’s reopening all these barely scabbed over wounds.
This time, last year, I was miserably hot and pregnant, scared, uncertain. Now, almost a year later, I’m here with no baby. Life goes on. The world goes on. But I’m stuck. Waiting somehow to feel better.
I remember after James’s diagnosis but before his death, I’d see pictures of other mothers that had lost children. They looked – still do – so normal. It seems like once you suffer such a horrifying loss, there should be some outward sign of it – a mark. Instead, you see smiling faces. You see “normal.” But we’re not normal. We are far from it. We’ve simply divided ourselves into two people – the person that the world sees and the alien existing within us.
Today is the birthday of a sweet little boy named Jackson. He too suffered from trisomy 18. Unlike James, he did not survive to be born, though he was at 37 weeks when he succumbed. His mother, Nicole, delivered him and held him and told him goodbye. It wasn’t enough time. It’s never, ever enough. We should outlive our children. They should never die before us. It’s so unnatural that the mind doesn’t know how to cope with it. Jackson’s mom goes on. She has no choice. I see her pictures on Facebook. I see her smiling at the world. But her eyes give her away.
This grief is bone-deep. It’s soaked into the marrow of our being.
When you’re feeling annoyed by the small grievances of life, when your three year old talks back again, when you want to yell because you’re just irritated, the house is messy, the car needs an oil change…stop and remember James and remember Jackson. Remember that none of us are guaranteed anything. Nothing. Not a single second of our lives is promised. Remember that and let the small things go. And think about our babies and think about us, here, missing them and hurting, even though the face that we show to the world may be a brave one. That’s a false face.
We love love you, Jackson. We remember you. We remember you and your family too, Nicole.