I was blissfully enjoying purple chewy candy when I saw the doctor’s office number pop up on my phone. “Hi Jamie. Do you have a minute to talk?”, she asked. (What followed sent me into a dark spiral I have not yet emerged from.) “Your baby has all of the markers for Trisomy 18.” She then asked me to come into the office that same day for further discussion. We heard it all: He most likely won’t make it to his first birthday, Trisomy 18 is a very cruel diagnosis, and there’s a chance he won’t be born alive, etc and so on. We went home and poured ourselves into research just hoping that we could find a shred of proof that it wasn’t as bad as she said. We were even naively hoping that by some chance, the genetic test results were wrong.
I kept telling myself that he will defy the odds because after all, if he’s anything like me, he’ll be stubborn! Weeks passed and his heartrate remained strong – and I held out hope. I was referred to a specialist who (not so gently) reiterated the truth of the battle we were facing. She pointed out his bowed legs, his omphalocele, and the fluid behind his neck and back. But, again, his heartbeat was still strong. I told her I wanted nothing more than to meet him.
Several weeks later, I woke up feeling particularly sad. Even more than I had been since receiving his diagnosis. I scheduled an appointment for an ultrasound to calm my anxiety. Surely, I was just over-thinking things; he would be fine. The tech started the ultrasound, and I saw her face, her jittery movements, and knew immediately what she wanted to say as she was unable to make eye contact with me. My boy was gone. At some point in the second trimester, that strong heartbeat of his gave out.
I spent four days in the hospital due to him being stuck and their initial refusal to remove him via surgery. After being discharged home, I bought a box with his name engraved on it so I’d have a special place for his ashes. At the end of July, we still had not heard from anyone about picking up his remains. My husband and I called every day for over three weeks, but no one wanted to tell us where his remains were. Fed up, I called the hospital’s Administration Department and demanded to know where he was. “Mrs. Wilcox, unfortunately, he was disposed of,” she coldly told me. How can something like that even happen? They threw my boy away.
His diagnosis wasn’t cruel enough? His passing wasn’t cruel enough? But now I have nothing of him? Grief compounded. It’s hard to describe the emotions. The outside world continued. I looked around and saw everyone going about their life and felt/feel completely deserted. I was even angry at the grass for continuing to grow. I often told my husband, “This cant be real.”
Grief is mean and isolating. It’s as if you’re standing in a crowded room screaming through a bullhorn, and no one even turns around.
I miss him. I miss what could’ve been. And I feel cheated. My faith has been shattered, but I hold on to hope that I WILL meet him one day. His life mattered and we say his name in our house every day: Noah James Wilcox. It’s been 7 months since his heart stopped. It seems like years have gone by, but at the same time, it feels like last week. Through all of this, I’ve learned that you don’t ever “get over it”, you just learn (somehow) to grow with it.
His Life Mattered
