In January of 2014, in a very boozy and sad dinner out together when J was in a particularly bad spot, ICU Dad and I had talked about what we would do if the worst happened. At that time, we had discussed bringing him to Toronto, to lay him to rest in a beautiful and historic cemetery in the middle of the city where my sisters and I buried my mother 15 years ago.
Characteristic of my family, we had taken advantage of a bulk discount on plots, so there was plenty of space.
We were not expecting J to die on April 3rd. We were expecting to bring him home. So when the palliative care team asked us what our “Plans” were, we just looked at each other, confused. How was this conversation possibly happening right now? How could it f*cking BE that we avoided this f*cking conversation after EVERYTHING that had happened in 2014, only to have it on the f*cking DAY he was supposed to be discharged to a beautiful and healthy spring and summer where we would finally get him on his feet?!?
Anyway, I (profanely) digress. The “Plan” still felt right to both of us. My mom, were she still alive, would have been here helping to pick up our pieces. Instead, we could trust her to take care of our second born son.
In the days after J died, our families, who had been so devoted to James in his life, descended upon us to grieve for him in death. Our friends in Toronto jumped into action to organize the service and reception. Without exaggeration, I have no idea what we would have done without them. A crowd of loved ones surrounded us at all times; they held us together and carried us through.
We said goodbye to James in the same church where we had said goodbye to my mother. There were nearly two hundred friends and family in attendance; some that we had seen the day before, and some who we hadn’t seen for years. The priest, herself a mother of a child close in age to J, wept freely as she delivered the homily. I just held on to ICU Dad for dear life.
Mourning a child is not like anything I have experienced before. I have days where I appear normal from the outside, and I can almost make myself believe that I am actually okay.
Then there are days where the tears stream down my face unnoticed, and I surrender to a flood of memories of his smell, his impossibly soft skin, his chubby little feet, his laugh. The feeling of his small, contented sighs into the crook of my neck as we settle in to snuggle after the workday. Those are unbearable days. It’s as though I am missing a physical piece of myself, some essential organ that has been torn out and left me mortally wounded. And I’m sure I will never be okay again.
My only strategy is constant motion. So whether it’s a good day or a crying day, we’re walking, working, gardening, playing, cleaning, home improving, eating ice cream cones with Max, anything…grieving like this allows for the inevitable sadness, but also gives a distraction when it becomes too much to bear.
As for this blog, ICU Dad and I decided that we would leave it up for now. So that the next time a sweet little peanut with Kabuki Syndrome or HLH or congenital glaucoma or any other complex constellation of issues comes roaring into the world, their parents’ incessant and obsessive Google searches might actually turn up someone who has been there before. There are not too many of us who know how to parent a truly complex child in the modern medical world. I owe it to the next ICU Mom to be here, if she needs me.
Who knows, you might hear from the ICU Family in the future. But for now, I’ll just leave it at thank you. For the meals, visits, ICU overnights, groceries, shoulders to cry on, texts, phone calls, care packages, cards, prayers, and overwhelming outpouring of love sent to our family over the past two years.
Most importantly, thank you, my sweet baby James. Our time with you was terrifying and insane and happy and perfect and complete, all at once. You were here for only 15 months and 29 days, and while I know you suffered at times, you also knew love and happiness. In only that short time, you transformed our family. We have faced and overcome unimaginable things, become fearless and competent and loving people we never thought possible, all because we love you.
I will carry your heart with me, my love. I will carry it in my heart.