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, still.
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. No words dignify numbness.
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:
© 2015 Steve &
Sarah Wickham and family.
Image Credit: Erin Tuckey. This
photograph was taken at Nathanael’s funeral on November Seventh, Twenty
Fourteen, during my eulogy for him.
