5PM on Friday July 18, 2014, I strolled through the door clutching flowers for my wife, and her parents’ demeanour said it all. The moment stood still. As I swung the door open it was as if the air changed. My father-in-law said, “Sarah needs you in the bedroom, Steve.” Immediately I knew something had gone horribly wrong. Seconds before I opened the front door I was mistakenly of the belief that no news was good news. Well, ‘news’ had now been received — the direst news — news you’re never prepared to receive.
You never forget moments like these. They linger, imprinted on the psyche, like the moment, the place, the situation we were in, when and where we all learned about the September 11 attacks.
We were already in worst-case-scenario land, but this diagnosis of our baby of 22-week’s gestation was as bad as it was certain. There was no escaping the reality we were plunged into. Sitting at the end of our bed, in shock, tears salting our cheeks, searching Google, hands shaking typing out searches and scrolling, trying to find out what this Pallister-Killian Syndrome was that our baby had. It was surreal. For the second time in eighteen days our world had been utterly highjacked, and those interceding days, as well as those that were to come, were an emotional and mental roller coaster ride.
We did our research even as we were rocked. We couldn’t just sit and do nothing. We were blessed at that time (within hours) to reach out to the Pallister-Killian Syndrome Foundation of Australia, and had received contact from them less than one day later. Seven days later we met the family of the Foundation’s president face-to-face. They lived in our capital city and only twenty minutes away! They treated us as family from moment one. We were in contact with the global PKS-Kids group and found the support of their community a blessing, too. We were being informed at light-speed. When all the hope you have is information you take it with gratitude! Suddenly there was a care that seemed perfectly at accord with our circumstance — parents who had experienced much of what we were facing.
But those minutes the news of our baby’s diagnosis came in we were shell-shocked. We had thought we were in the clear, which possibly made the news harder, but there isn’t a time when you’re prepared for such news; a diagnosis that renders hopeless the chances of your unborn child’s life being normal even if they were to survive.
What We Learned
Grief leaves its markers throughout the rest of our lives. Life never returns to what it was like nor should it — that is perhaps the greatest loss. What we lost meant too much to leave us unaffected. Important dates, as in this present situation, can become cherished anniversaries that form a healthy identity of oral tradition where God’s faithfulness can be tracked and therefore praised. But I acknowledge that markers can also continue to be incredibly painful.
We also learned something that Dr Rod Wilson recently put into words. That is, anguish is not so much an invitation to hopelessness, but to hopefulness — that pain necessitates the search for hope. Pain challenges where we place our hope. We have never seen anyone fail to restore their lives who kept faithfully searching their way through their grief process. There really is no other option if we wish to be restored to hope. The empowering thing is that we who grieve are at the centre of our own destiny with God who is always there.
Finally, we have learned about the inevitability of loss; that grief sweeps its way through our lives at some point or other. Nobody enjoys it. None are spared of it. All are surprised by the ferocity of it. God’s purpose in it? To call us beyond the source of our hopes and into Him who is hope’s very source.