Epitome: Remembering How Nathanael Changed Our Lives 1 Year On

OUR world changed on Tuesday, July First, Twenty Fourteen, about 11 Ante Meridiem. Dread surged through our hearts, when, as the doctor’s demeanour took on a teary sternness, he sat forward to deliver devastating news — “… I am so very sorry… you will need to be strong for each other… it will be a long journey.” Our baby was growing fine, but internal organs were horribly misplaced due to a congenital diaphragmatic hernia — liver high, heart transposed, no room for lungs to develop, kidneys incredibly enlarged, and nothing that could be done.

The experience leaving the ultrasound rooms that day was cataclysmic — nobody should experience what we experienced. We didn’t know where to look. We felt like imposters. Riddled with a sense of numbed doom in the place of the hope and joy we had only an hour previous. I recall being livid that I couldn’t protect my wife who was a torrential mess, as we negotiated the mess of construction works around the new medical centre. It wasn’t the workers’ fault; how were they to know? That, we had just received news nobody is ever ready to receive. Still, I wished I could have barked, “Get out of our way!”

The journey home was surreal — something you never forget. Our then 15-month-old son was whimpering, having discerned something was very wrong; Mum and Dad in tears in the front. We remember being astounded that he picked up our emotions so intuitively. The rest of the day was unreal, as were the next few days, though God’s Presence was somehow there with us, empathising, in our resigned sense of numbness; a truth-filled hopelessness all-too-real in our reality.

That day, a day etched in our memory, we entered a horrendous four-month waiting game, book-ended by the day we learned our horrific news and by the day our baby was born.

Back on day one, we waited for what seemed an eon for our private obstetrician to get back to us about what to do. He phoned only a few hours later; he was so very sad for us. He referred us to the specialist obstetric service at our major public hospital. The few days we had to wait seemed much longer than just a couple of days. As I look back I think we were in such a state of shock. During such a time people would outstrip us with their spoken thoughts when we simply needed them to be there for us — no words, no spoken thoughts, nothing.

On July Fourth, Sarah had another scan and an amniocentesis, which was a test to determine if there were other abnormalities in our baby — especially chromosomal abnormalities. That waiting game was a two-week roller coaster, and, truth be told, we were anxious all the way through it — each and every day. We got the ‘short results’ within a few days; no abnormalities were detected — such relief! But then it sunk in that we still had the long results to come. Anything could still happen. The sick irony was, even at the last gasp, we thought everything was okay, having had the all-clear earlier on Friday, July Eighteenth. That was until about 4.30pm. This was the moment the full results were finally known. Sarah took the call, her parents were there, and I was out getting Sarah flowers. We will never forget, about 5pm, sitting stunned at the end of our bed. Like, what just hit us? Moments like this you cannot shake a mind that will not let go of the new information — not for days!

Our baby was diagnosed with Pallister-Killian Syndrome (PKS), an incredibly rare twelfth chromosomal condition affecting only a few hundred people in the world. Our baby’s case was complicated by the internal organ issues. Both conditions together compounded our case. Our baby was defying the limits just living and growing. It was the direst prognosis. And PKS, it needs to be recognised, is generally a much worse condition than, say, Down Syndrome. Most people with PKS never walk or talk, and many are profoundly intellectually disabled.

So our hopes suffered another death that very moment. The more we researched PKS, the more our hopes plummeted. Yet, we were still preparing for a life-changing moment. We really did feel very raw and vulnerable, but we knew the worst was still ahead. And, yet, through this cauterising season, God provided for us through contact with the PKS community both locally and globally — relatively small but tight-knit groups. I met dozens of PKS parents online and we met one PKS family in our home city (whom we were quickly friends with). For all the questions we had, they had the best answers. They knew more than the medicos. Their love and the love and prayers of many others from within our church community and beyond helped. We felt carried. We dearly did.

August was a very terrible month. We were pushed to the limit, physically, mentally, emotionally and spiritually. I was thankful for my writing as a way to solace with God some of what I was processing. We thanked God that our baby was still safe within the womb, and felt all we could do was trust God in the midst of our grief. We were in the throes of a grief observed. During this time we were learning new things all the time. Sarah certainly learned about the negative power in such an innocent question — (being asked with a smile) “Are you pregnant?” You don’t realise how many people bring up the matter of pregnancy until you find you are in a position where you don’t want to talk about it. Sarah would respond, “Yes, I am pregnant, but we are not expecting a good outcome.” It would turn many moments south. But most people understood.

We noted during this time, in the ambiguity of this grief, the fact that our only real need was love — that we had everything we needed, which didn’t make things easy, just easier. We continued to pray. And many others prayed for us. It was enough considering nothing could be done but wait this out and step each day forward in faith. And yet, there was a source of cruelling anguish in us for the lack of love we received from one very important entity to us. We were at our most vulnerable, yet such a dearth of care was experienced in one quarter that still defies our sensibility. But such a dichotomy only proved to steel our faith. And, now, this very situation God has used; it has caused us to dig deeply to forgive that element. God is so good.

It was actually early in August that we learned that our baby, in the words of our Professor obstetrician, deserved “comfort and respect.” We had to grapple with hard things that are difficult, if not impossible, to understand — our baby would not survive. We met the paediatrician once, and he, along with the infant loss coordinator, took us through what to expect at the birth. It was a teary meeting. Our son would probably just gasp for breath and pass away within thirty minutes. He was given a five percent chance of lasting hours to a day. The medical team would not do anything “heroic.” They were talking about our baby here! There was quite a sense of rage within us, but we felt tempered by an acceptance we could only thank the Holy Spirit for.

We were finally in a position to send out a letter to our church family — locally and globally — with our heartbreaking news. We urged everyone to continue to pray. And we received so much support. On the day we learned that our baby wouldn’t survive (August Sixth) I wrote an Ode to Our Ailing One. And yet, we were still standing, observing — even, for me, marvelling — at the storm clouds as they slowly, even benignly, formed off in the distance, set later for mass deluge; a flooding cyclonic destruction. The hardest days were still some time away. And, still, there were some moments to reflect over the fact that our baby would be healed in eternity with comparatively little pain to be experienced in this life. At this time we would often find our heads and hearts in heaven. Heaven was the only solace.

All through this period I was wondering, though it was hard, why it was also so comparatively easy. I had experienced this anguish before, and God had taught me to endure it by enduring it. That, and people’s prayers, and the veracity of our faith. But I could see how being scorched by the Refiner’s Fire eleven years ago had helped in that day. It made me who I was now.

Because of our baby’s condition, there was a hyper-production of amniotic fluid. Sarah would need multiple amnioreduction procedures. Sarah had her first amnioreduction procedure (the first of eight) on August Twelfth — at 25 weeks gestation. These procedures involved the medical team inserting a needle into Sarah’s womb under ultrasound and draining two litres and more each time; a process taking an hour or more. More than once the needle came into contact with our baby — and once it drew blood! We sincerely prayed the baby would not come, which, by the very nature of the procedure, threatened to bring labour on. Each procedure was stressful, yet by God’s grace we took it in our stride. Sarah looked as though she was almost full term already due to the extra amniotic fluid our baby was producing. Sarah was always very brave during these procedures.

Peculiarly, I recall God saying to me, routinely, by September, “Steve, I’m giving you just enough time to do everything.” I found this very encouraging, because I knew all we could do was plan and prepare — this we could do. I (and we) were not going to fail this moment; the most important of our lives to date. We were not going to go A.W.O.L. when we needed to be there for each other as the doctor had urged us to do.

Throughout late August until Nathanael Marcus was finally born, still, we took every opportunity we could to take him out on dates as a family. We loved the thought of spending time — the four of us. It was all we could do. We did what we could.

The clouds on the horizon were darkening all the time through September and we feared the storm was imminent. All along we felt that, not always realising we were actually in the midst of the storm already. About this time, we received the “palliative care plan” for our unborn child — yes, unconscionable; a palliative care for an unborn child.

By September’s end, we were ready I think — ready in our minds and ready in our hearts. And that was fortunate, for there was another storm about to roll in — a project God had earmarked us for — even in the abyss of life as it was for us. I was quickly reminded, and often, through October, when I was running the household, those earlier words of the Lord: “I’m giving you just enough time to do everything, Steve.” Now those words took on a special significance. Those days in October were difficult to fathom; that such a need had arisen in another family that God had called us to help pastorally within. A desperate situation for all concerned. A situation of anguish for those we had come to love as our own. Only God could orchestrate within us the grace to avail ourselves to this. So we had not just this issue of heartrending grief to deal with, but an inane occupational issue, and an urgent pastoral issue as well — three-in-one, a trinity of tribulation, with God’s grace still so sufficient to hold us! Amazingly, we still had the sense that God had ordained this very season — all of it.

Early during this month we also had the opportunity to sow into our impending pain. It was too easy to be annoyed with people who superimposed their own lens for grief over our own. We were being real and occasionally people did actually get it; what we were going through. Again, there was much cause for grace for those who didn’t or couldn’t understand where we were at. We desired affirmation and encouragement, not pity or advice. When all was said and done, we simply hoped forward to the time we would finally meet our son alive. To meet him alive was our extant and exigent hope.

God was still readying our hearts as we approached the birth. We were introduced to the song that meant most to us at this time. As we reflected over the fact that grief had chosen to visit us again, we still found comfort in song, in Scripture, in prayer, and in each other. It Is Well took on profound meaning for us; that sadness and grief is the very key into the heartway of God.

Throughout this time, as some sort of compensation, even a form of healing in advance, God continued to birth in me ideas related to brokenness and grief and reflection, among other things. I’m thankful for the encouragement of others at what God was giving me to write on. I’d been writing on brokenness and grief for years, and suddenly I was finding my experience aligned with my theology — a revelation for affirmation. This brought immense comfort, relief and peace. What I believed and practiced and wrote about was real and my faith was operant.

The final weeks and days of this four-month journey God continued to hold us as we continued daily to trust in him, despite the wind and waves that incredulously still know and bow to Jesus’ name. God can still calm those winds and waves as he was doing for us.

***

Nathanael was stillborn silently sometime on the Thursday afternoon, October Thirtieth. He died due to cord prolapse somewhere between 3.30pm and 6.30pm. The moment the midwife told us, at 6.30pm, was surreal. I just don’t know how to describe it. It was probably the worst moment of all. I skated between solacing the midwife whose disposition changed markedly, hugging a grief-stricken Sarah for minutes at a time, and wrestling with my own emotions. That was one moment that seemed unreal — as I look back — even though my experience of it, at the time, felt never realer. No sooner had scans been done to verify what we already knew, Sarah started to spike a fever; infection was rapidly tearing through her body. They injected three different intravenous antibiotics into Sarah as the situation became critical over one half hour. I swabbed Sarah’s forehead with wet towels as she shivered and I genuinely worried that I’d lose her. An emergency caesarean section was ordered. The caesarean section was, like most things at this point, surreal. It was a moment where I prayed, “God, give me the strength for what I’m about to experience; to meet my deceased son.” The staff assisting us were either awkward, distant or gentle with us. I chose to simply relate with each of them as real as I could. Sarah was still quite ill. God gave me strength to stay actively in the moment and not think too much. I later recorded my reflections on actually meeting Nathanael.

***

We had 179 hours with Nathanael. We made every moment count. We made little videos and took lots of photographs. We held his little lifeless body as much as we could and had him present in the room with us as much as possible. One of my favourite photos was one Sarah took from her bed as I cradled Nathanael in my arms on the hospital room floor. All our family came to see us in hospital. Heartfelt gave us the most astonishing gift — professional photoshoot and professionally produced photos at no cost with lots of love.

Nathanael’s funeral was arduous for Sarah. I broke down most when the hearse left the church; such sorrow that he really was gone now. But I felt unbelievably real throughout — full of God’s strength for the moment. It was not hard for me to be there for others as I normally would have been. I felt so privileged to share a eulogy for Nathanael. A formal goodbye is so dignifying, and everyone who attended honoured not only Nathanael’s memory, but they honoured us as a family. After the ceremony, when everyone had left, we went home. I put Sarah into bed and I took my children (the remaining four) out for lunch. Sarah and I had a quiet weekend and following week. The week following we went away thanks to the generosity of good friends.

***

Our shining gift of God was born on an incredibly special day — another sign among the many that God was with us — and his birthday reminds us, evermore, of a special person we love who we also interceded for, because it was his birthday this day, too.

I wrote a few articles with Nathanael Marcus cradled in my arms. We endured those days as if we were carried. We just did what we could. We kept stepping by faith. And God gave us people to love us and to uphold us in prayer. It wasn’t as hard as one might think. But, for what we experienced, the memories never vanish.

Now, one year on, there is a loneliness in my heart for the richness of God’s Presence in that cavernous place, and of others’ love back then. Strangely, I miss those days. And I thank God that we felt carried through them. And, as I said many times during the past year, believing — God is good. As for the future, we feel equipped for a future storm, yet we will inevitably be found wanting enough to need to rely fully on God.

That, I praise God for.

***

An Afterword

Reflecting over our story, a bank of resources has been created. We feel these resources are not only there for us, for our own memories, but they are there for others, too. Please partake. Get what you are interested in or what you may need.

The following hyperlinks point directly to articles I wrote during the year that was July, Twenty Fourteen to June, Twenty Fifteen:

On eternity… we know that we will go to Nathanael; that he will not come to us.

On time… we can only make the most of the time we have; once it’s gone, it’s gone.

On reflection… to sit in our pain and to digest it in truth is life.

On love and loss… love sows, but inevitably reaps loss.

On emotions… there is only one thing for the myriad emotions.

On pain… simply, our pain is precious to God.

On not aborting… the sanctity of human life (from conception) is very important.

On wholeness… there is always the fear in grief — will I ever be the same again.

On courage… actually meeting my deceased son — what was that like?

On anticipation… what I wrote the night before Nathanael’s funeral.

On heaven… loss of a believing loved one entreats curiosity for heaven.