The week of the death of a loved one always involves the planning of a funeral, and because we were expecting our boy Nathanael wouldn’t survive, we had already made some basic preparations. It was an enormous rollercoaster ride spending time with our son, seeing to all the arrangements, tasking our family in support, and attending to those arrangements. There was only enough time to do everything and be exhausted.
ENCOURAGEMENT FROM NEAR AND AFAR
It all culminated on 7 November 2014, when upon waking and checking social media (as we do) I saw a plethora of messages of support from the Pallister-Killian Syndrome global family. There are only about 300 families worldwide, and we must’ve received messages of support from nearly 50 of these who are part of a tight PKS-Kids network. We were both blown away with the love of all these vulnerable people and families, families of which had been our family in support for the previous three months, from the time we received our diagnosis.
We were also completely gobsmacked by the love and care of those in our home church among others. People did practical things — yard makeovers and beautiful meals — because I didn’t have time, but it was more than that. Everyone who followed our journey, people all over the world thanks to social media, held us in their thoughts and prayers, much to the degree that we felt carried in our faith.
NEGOTIATING THE SERVICE ITSELF
The next thing to negotiate was getting to the church and spending our very last moments with Nathanael. Sarah was both incredibly brave but also unbelievably broken.
At the end of the ceremony, Sarah literally had nothing left. I on the other hand continued to feel carried. The beginning of the day I just asked God, “I hope we’ve got it in us to do this, Lord. Please help us.” Our Lord did not disappoint.
By the time we said goodbye to the hearse it suddenly dawned on me that Nathanael was gone — we’d seen him for the last time. Though his spirit had flown over a week ago, there was a great deal of human comfort in having him close, accessible. That moment the hearse left I sobbed. I’d held it in until that point. (And I guess I’ve cried dozens of hours of tears since.) Yet, soon I was tasked with thanking the throng gathered at the doors of the church.
Again, to say Sarah was done was an understatement; not only the grief but the very physical nature of recovering from a C-section in the worst of circumstances — her body had been through so much, not to mention the lack of sleep. There were other stressful factors at play throughout this season and the weight of all of it continued to bear down on the both of us. But we were thankful that God, with the support of our family and friends, had seen us through.
A MEETING WITH LONELINESS
After funerals there’s normally a wake. We had a morning tea at the church for those who could stay. Sarah’s condition dictated that we needed to get her home sooner rather than later, but many wanted to offer their personal condolence and it was difficult to convey we wanted it over.
When we did finally arrive at home, I put Sarah into bed and took our son out to have lunch with my three daughters. Much as I’d been doing the previous four months, I took on the lion’s share of what needed doing (though Sarah’s mother had also done an enormous amount of work on a weekly basis, and we’d received help from my parents too). The thing that was lost on a few people at the time was the sheer amount of work involved in managing a household supporting a wife who required almost weekly medical intervention. Yes, a few expected me to be just as productive as ever. That was just not possible, and I know I did the best I could with the time I had, using work as a health distraction factor, amid what was a season of calamitous ambiguous loss.
The lunch date with my children was a beautiful occasion just to be together — with those who count most. It has only just dawned on me that we went to the same café as I regularly frequent when I’m working for the Department of Fire and Emergency Services. Being a person who sees the inherent value of place, I see God in that. It was a great way to wind down. Once my son and I got home, the rest of the day was deeply anticlimactic; I guess we all just felt so empty after a week where distraction favoured purpose.
After the funeral, when everyone’s gone, and you’re left to your own devices, there’s no escaping the full weight of loss is inevitably felt. For me, it was a very silent loneliness and I can recall calling my mother as I continued to let Sarah rest. That following week was probably the quietest of our lives. It felt like the world really didn’t exist. We stayed home and bailed on life completely.
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As a funeral celebrant, I am constantly in awe of the courage families enduring loss display. It’s why it’s my favourite place to be. Where people are living testimonies of the strength grievers exemplify. In polarising and at times paralysing weakness I have seen the paradox of the most inspiring strength.
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