On July 28, 2014, Facebook tells me, I added 17 new friends. That wouldn’t be anything to write home about apart from the fact that each of the 17 people have something rare in common. They each have a child with Pallister-Killian Syndrome (PKS).
Instantly we discovered that our Nathanael Marcus had this rare syndrome (around only 300 people in the world have it) I made a search of the Internet, and within a day had made online contact with not only a global group, but the local Foundation as well. We had actually met the President of the PKS Foundation of Australia and his family face-to-face within a week. So, within 10 days of having had our brutal diagnosis, we found people who would become a cherished community for us.
As we prepared to publish our memoir of Nathanael’s life in 2018, we reflected deeply — having to reread and reread the book so many times in editing it. We still pinch ourselves as to how well we were carried by the prayers of the many in those times. That, and the faith we deployed accepting our lot, whatever was to come.
Our prayers didn’t deliver our baby from his peril, and that is okay (has to be), because we prayed that God’s will would be done. Our hope is to see him soon, according to His will.
This is a hard thing for many to understand; our will did not initially align with what God had ultimately in mind, but we did pray ultimately, ‘Your will be done, Lord, and not our own.’ It is still a hard thing for many to understand. But the way we understand prayer, whilst it’s the most powerful thing we could ever do, is it’s to be God’s prerogative and not our shopping list.
Stepping through those days, one tumultuous day at a time, wasn’t that hard; faith really isn’t that hard. Because faith is trust, it’s pretty simple. As we walked, step-by-step each day, doing what we felt was God’s will for the moment, we tried not to overthink our situation, and just be a support to each other.
And yet as we stepped the days between July 18 and July 28 of 2014, God was adding a grace that somehow compensated for our grief. For what was being taken away from us, a baby we so desperately loved already, there were things being added, like fellowship with a group of very special people.
Although Nathanael passed away over six years ago, we’re still embraced. The PKS Foundation of Australia even invited me to join them on the Board (I served as Secretary from 2017–2020), and we’re personal friends with a few of them.
Just today I heard from our friend the President, Nic, that another of the precious PKS children had lost his life. I dedicate this article to Thomas and his family.
For many friendship like this would seem hardly a worthy comparison, but it isn’t about comparisons at all — it’s all about accepting the inexplicable and inscrutable will of the God in a life that is a constant uncertainty. Again, faith accepts. Were there tears? Many of them. (And still today at times.) But, even in that, brutal as it was, our minds were grounded in acceptance for whatever our reality had in store for us. Still, some moments floored us. And not always what we expected would upset us.
Grief, as it is, is hard enough, but if we will look back over the journey and notice the blessings that God was doing even at that time of our loss, gratitude fills our hearts with His Presence.
For everything life takes away there is something added.
The heart that insists on believing this will find what it is that God has stowed already as the very means of hope to get through the grief of loss to the only prosperity that means anything.
True prosperity is the comprehensive spiritual blessing that says we overcome through suffering. Nothing can defeat the hope of the one who grasps this truth with both hands.
Photograph above taken by Heartfelt.
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