I woke up the morning of September 18, 2019, and had two children.
This was, in and of itself, not a strange state of affairs for me. From June 24, 2010, until February 2, 2014, I had also had two children.
The difference was that, between February 3, 2014, and September 17, 2019, I had had three children. That Wednesday, September 18, when I woke up, Colin, my youngest, had been dead about 12 hours.
I can’t tell you what the death of a child does to you because I’m still trying to figure it out. I know that, when I first met my wife and we began discussing having children, it seemed very important to me that we have three. After we had Emma and Noah, there was some reluctance on Christina’s part to go for a third child. There were points in 2013 when we thought Christina was pregnant, only to find out that she wasn’t, which one could have taken as a sign that we were only meant to have two. Friends of ours with children the same age seemed to get effortlessly pregnant – perhaps not even on purpose – with their third, which made the desire for a third kid seem only more important to me.
And then Christina got pregnant. And, looking back, the troubles began almost right away. Around two months pregnant, we discovered that she was bleeding slightly and had placenta praevia, a condition whereby the placenta was blocking the birth canal. It sorted itself out, but it seemed a bit scary. Adding to the annoyance, we got that news the same day the British royal family announced that Will and Kate were pregnant once again. At least someone was forming a family without problems.
A month later, Christina tumbled down the stairs in our house and broke her foot. One doesn’t want to know what the painkillers she received might have done to a baby in utero.
And then Colin was born. It took a little effort. He was about a week past the due date and, the day we went to the hospital, they ascertained that the amniotic fluid levels were very low. So they induced and he came without a fuss. He was the smallest of our babies, but he was beautiful. We had about two years with him with no trouble, though he did have measles when he was about one year old.
In November 2015, when he was not quite two, we were out with friends – the one who got pregnant so easily in 2013 – to celebrate our 10th anniversary at the restaurant where we’d hosted our wedding reception. I got up to walk around with Colin. After a spell exploring the bar, he darted back towards Christina. I assumed he would stop by her. Instead, he kept running and barreled down a flight of rock stairs. Again, you wonder what that might have done to his head.
Now, I don’t know if any of the things I’ve just listed played any role. I never thought back then that he was in any particular danger from any of these events. I still don’t know if any of this played any role in what then happened to him. One hears things. One wonders things. Could the tumble down the stairs have sparked some injury that metamorphasized? Could all the troubles when he was still a fetus have been an issue? It’s impossible to say. I’m not sure I would want to know if I could find out.
What I can say for certainty is that, around December 2015, he began vomiting. A lot. He’d sometimes go a day or so without vomiting, and then there were days he’d vomit three or four times in one day. There was also a spell in there where he seemed to have trouble keeping his balance, more so than a normal 2-year-old might experience. Christina got nervous. I was convinced it was just some kind of bug. But our pediatrician got nervous too, and she had originally trained in oncology, so she pulled some strings with some people she knew and got us in for an MRI in March 2017.
I remember going to the hospital that day, thinking how stupid this all was and how I’d rather be at the gym. I remember Christina had to leave after a while because it took too long: We’d later learn what a small miracle it was that they got us in for an MRI on such short notice, since it can take weeks to schedule these things. I remember how the one technician in charge of Colin’s scan reminded me of my friend Tom. And then Colin got his scan and while he was still unconscious, the technician told me my son had a brain tumor.
And then hell started.
We rushed him to the hospital and stayed there for about six weeks. We learned he had a 30% chance of survival. They told us a lot of things and they shuffled us from wing to wing to wing before we finally landed in the pediatric oncology ward, Colin freshly outfitted with a shunt into his chest and another directly into his skull.
And then things seemed to go kind of OK. He responded well to the chemotherapy. Ditto to the radiation therapy. We went home and had a year of doctor’s visits and ridiculous waits for blood tests and MRIs. We went to a family rehab center for families of those children who survived cancer. The year 2018 began and we felt we might have beaten it. By this point, we were only giving him an anti-epileptic medicine which, some theories go, had the potential to keep tumors from reforming.
Around August, he began having fits, often when he didn’t get something he didn’t want, where he seemed to black out. They became more frequent. During a visit to the hospital in November that year to figure out if there was a neurological reason for it, they determined that he wasn’t getting enough oxygen into his bloodstream. Weeks later he was in the hospital for pneumonia. During that whole December, they swore up and down that the tumor wasn’t coming back, but that residual damage from the tumor was impinging his body’s ability to cough, swallow and breath properly. He ended up with a tracheotomy and got shipped off to a rehab center in Brandenburg with Christina for the first three months of 2019.
Just as they were about to release him, he got another MRI, which showed that the tumor might be back. We still bought him home and endured two months of a truly wretched home health care, which might have been OK had the service ever found a way to get the nurses to show up reliably. We were just getting this system figured out when the news came after a second MRI that the tumor was indeed back and that it was fatal. We checked into a hospice in June and spent three long months there, watching our son die inch by inch.
And now we’re back home, trying to learn to live as a family of four. It’s surprisingly easy at times … until you reach a point where it’s not easy any more. There are little reminders of him everywhere and, no matter how you cut it, we have a Colin-sized hole in our lives. There are many days where I wish I could just break down but, as I pointed out at the beginning, I still have two children to raise. Perhaps, me being me, I take too much inspiration from comic books, but there’s a scene in “The Sandman” where the main character’s son has just lost his fiancée. He’s down and probably wants to end it all. The Sandman, not being one for much empathy, simply tells him “You’re alive. So live.”
There’s many a moment where I don’t feel life is treating me much better than that. But there’s the thing. I’m alive. There are some people who rely on me and, as much as I want to see Colin again in the next life, I’m not finished with this one yet. So I have to make the best of it. So I write. And that’s what I’m doing here. Thank you if you’re willing to take the journey with me.