Those days after we received our death sentence

Sounds dramatic, doesn’t it; the title. But that’s how it was. Being in the Gold Team exam rooms having yet another ultrasound, waiting with bated breath, “It’s not good. He’s not going to make it I’m afraid. He deserves comfort and respect.”

Those words, “He deserves comfort and respect,” those words… they had gravity. They ended up having even more gravity when he received neither during the delivery, but that’s another story.

Those days after we received our death sentence—those days after three weeks hoping he’d be okay—were polarising. In some ways, a prayer had been answered. We knew what we had to pray for: a miracle. We knew we had to ready ourselves to lose Nathanael. But on July 18, 2014 a chain reaction started, much of it grief-laden, but some of it good, all of it touched by God—so present was our Lord with us, by our faith and others’ prayers.

Those days after we received our death sentence, that he wasn’t going to make it, in receiving the palliative care plan (never a nice document or process to deal with), in preparing for things we never choose to prepare for, we just keep stepping out the process of our lives. There was no rocket science in it, and it certainly wasn’t complicated, but it sure was hard.

We met further external challenges the best we could; an abject lack of compassion from a certain critical quarter that absolutely did our heads and hearts in, and absolutely interrupted our grief process so many times. Suddenly, with everything going on, we felt two things constantly—the absolute presence of relentless spiritual attack, with God’s incredible, palpable presence.

Those days after July 18—a bleak Friday evening having received news our boy had Pallister-Killian Syndrome, a very rare and complicated diagnosis—were full of experiences uncharted for us.

The days and weeks and months ahead; only God knew we could do it one day at a time. It’s all we did. Nothing complicated. We cried when we felt we needed to. We stared into space at other times. And just held each other when it was all too much. We found dark humour alleviating and necessary in dealing with circumstances that were, all together, completely off the wall.

At any rate, it helps reflect five years on. How did we do it? Doesn’t matter. We did. That’s all that matters.