Tuesday, June 30, 2015

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 if I recollect it properly. There was another serious issue going on in our lives related to my employment (which we are not at liberty to discuss; which we were at a loss to understand — especially at such a time as this), and this, along with the events that would occur related to the pregnancy, pushed us 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 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 emotions… there is only one thing for the myriad emotions.
On pain… simply, our pain is precious to God.
© 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.

Monday, June 29, 2015

God’s Job Description and Ours – We Love As He Loves Us

It’s the Holy Spirit’s job to convict, God’s job to judge and my job to love.
— Billy Graham
THREE divinely appointed roles. It makes life much simpler for a Christian to be faithful, to both their faith and to all their relationships, when they can hold this pithy sixteen-word statement in the tensions of their consciousness.
The Holy Spirit’s Role – Convict!
It is such a comfort to know, that, from an evangelistic perspective, it’s the Holy Spirit that must move in a person’s heart. We can only put before them the teaching. We can only teach the Word of the Scriptures. We can only model the Scriptures in our lives. Then, and only then, in the sense of good timing, can the Holy Spirit quicken a person to a decision only they can make. Many people who have apparently ‘come to faith’ never actually progress in the faith. Jesus talks about the four types of seed in Mark 4:1-20. Only one seed of those four that Jesus alluded to — those who have been convicted by the Holy Spirit — will “hear the word, accept it, and produce a crop — thirty, sixty or even a hundred times what was sown.” The Holy Spirit will not force a person beyond their will — that’s love!
God’s Role – Judge!
How are we to know with any definite certainty in this life what the Judgments of God will look like — their effect — and who they’ll affect, and how they will affect any of us? We really have no idea other than what the Bible tells us. We can trust the Bible as the Word of God, but the Bible is only so instructive. Why would we then cavort with potential lies? It’s the devil’s playground to preach ‘turn or burn’ without love. Shudder to think that we, in preaching such a venomous and vexatious message, might be the ones who say, “Lord, Lord,” only for him to say, “I never knew you. Away from me, you evildoers!” (See Matthew 7:21-23) It is a divine mystery that the Judgments of God are couched intrinsically in love. That, they are! Such knowledge is only ours by faith. Our role, personally, as far as God’s Judgment is concerned, is to receive the truth: how can we expect to be saved if we do not wish to be saved?
Any Human Being’s Role – Love!
Isn’t life simpler when we know we only have to love? Not exactly. To love is hard work, but only to the extent that we must pour contempt on our pride continually or act diligently when we are tempted by fear or laziness. And then, when we genuinely have the Holy Spirit, we find it intuitive to love — we are convicted every time (every day!) we stray from the will of God. Repentance becomes our byword and love is the response of our repentance. Simply, we love people with the love God loves us with.
***
Accepting our role as a human being is none other than simply to love. Love’s role is none other than to simply accept all other human beings.
We allow others to settle matters of conscience according to their own devices. And yet, we can still teach the matters of God with consciences free because we are tied only to his Word.
God is love and that is our invitation; to excel in our love, like Jesus.
© 2015 Steve Wickham.

Friday, June 26, 2015

In Defence of the Discriminated Against

Once-upon-a-time, there was a story trending on Twitter: an evangelical pastor attends his first Pride parade and holds up a sandwich board in favour of Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) equality and rights.
The story can be read, here.
When a pastor aligns him or herself with a sandwich board that says, “As a Christian I AM SORRY for the narrow-minded, judgmental, deceptive, manipulative actions of those who denied rights & equality to so many IN THE NAME OF GOD,” they might feel they are doing a good thing; not suspecting that they are in danger of offending people — offences based possibly in assumption, probably because of the context. The distance between fact and fiction is sometimes just a bare thread apart.
Who is the pastor pointing the bone at? We might presume Christians. But it’s not only Christians who have apparently been “narrow-minded, judgmental, deceptive and manipulative.” As a Christian, he deplores narrow-minded, judgmental, deceptive and manipulative behaviour. As a human being, too. Anytime most of us see narrow-minded, judgmental, deceptive and manipulative behaviour we are enraged from within.
Let’s look at this statement further. It abhors the “actions of those who denied rights & equality.” There is no question that human rights have been infracted trillions of times over the history of humanity. Human rights are inherent to all human beings, whatever our status. We are all equally entitled to our human rights without discrimination. These rights are all interrelated, interdependent and indivisible. It is easy to think that this portion of the statement, or the whole statement, is directed at the church, in sympathy to the LBGTQ people (in this case). But perhaps it isn’t. Given that it’s a pastor holding the sandwich board, we could assume both — and that he just detests the very thought that discrimination of any sort takes place or has taken place. Given that he’s at a Pride parade leads us to make an assumption, but which assumption will we choose? — There is more than one possibility. Try reading the sandwich board from the angle of discrimination in any sphere; the wording does appear to hold up for any situation.
“Equality” is a potent principle that is worth fleshing out in every arena of life. Everyone deserves a fair go at life; to live without fear, to be loved, and to have the opportunity to love. Without fear.
The people who will disparage the rights of others will do so in “narrow-minded, judgmental, deceptive, manipulative” ways. Yet, we are all narrow-minded, judgmental, deceptive and manipulative on our worst days — most times when we think we are at our best.
The final part of the sandwich board states “IN THE NAME OF GOD.” There are clearly many times when people have done abhorrent things IN THE NAME OF GOD. It is easy to make the assumption that this is pointed at Christians when perhaps it isn’t — though it would be na├»ve to suggest this isn’t pointed at some parts of the church (e.g. Westboro). Or, perhaps it’s pointed at those who call themselves “Christian” yet are still hate-filled; there are still the strains of hurt deep within them that they haven’t yet been healed of. They ought to spend their energy of hate more worthily, take an honest look within, and receive Christ’s compassion for themselves.
We need compassion for those who have not yet approached within themselves the liberating truth of their sinfulness. When we live in the light of such truth we know we are hardly qualified to judge others. We know we deceive ourselves and need to be on guard against deceiving others. We know we are capable of manipulation. And we know just how narrow-minded we can be because of the assumptions we so easily make. Those who are narrow-minded, judgmental, deceptive and manipulative deserve our compassion.
We can say we are sorry for the sins people have suffered. Well done, pastor.
***
It is too easy to make assumptions. We make them when there is precious little information for our minds to feed on; when our hearts are hungry for truth.
© 2015 Steve Wickham.
Image Credit to Hel Bel.

Thursday, June 25, 2015

When Love Is Sorely Missing From the Same-Sex Marriage Debate

TWO wrongs don’t make it right, ever.
The situation is this: an evangelical pastor attends his first Pride parade and holds up a sandwich board in favour of Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) equality and equal rights.
The story can be read, here.
When a pastor aligns him or herself with a sandwich board that says, “As a Christian I AM SORRY for the narrow-minded, judgmental, deceptive, manipulative actions of those who denied rights & equality to so many IN THE NAME OF GOD,” they must surely know that they are in danger of return fire.
It doesn’t matter what side of the same-sex marriage debate we sit on. That’s irrelevant. The matter of a pastor pointing the bone at Christians who have apparently been “narrow-minded, judgmental, deceptive and manipulative” reeks of hypocrisy.
For the record, and from the outset, no Christian should withhold love from anyone.
But let’s pull this statement apart. It assumes that “actions of those who denied rights & equality” — in the realm possibly of the marriage equality debate (maybe more broadly) — have actually done the wrong thing. Nowhere has the traditional Christian lobby denied established rights. They cannot legally do such a thing. Are these human rights? Human rights are inherent to all human beings, whatever our status. We are all equally entitled to our human rights without discrimination. These rights are all interrelated, interdependent and indivisible. If the church has ever discriminated against the rights of the LGBTQ community it has done so from the beginning, based on the interpretation of biblical principles. Is this pastor saying that the church has gotten it wrong for 2,000 years? I can concede that LGBTQ issues have been more at the forefront in recent generations. But has the Church ever roundly accepted homosexuality as God’s best sexuality for a person? (I am not arguing for or against here, just saying.)
“Equality” is another very intangible idea. There are myriad areas of life that are inequitable. I personally don’t like it that women still don’t get paid the same and still don’t receive the same leadership opportunities as men, in the workplace or in ministry. I, like millions of others, abhor that millions of women are violated so much, especially in terms of family violence. These are more pervasive phenomena than the perceived inequalities against gays. Gays deserve this equality — they are sinners just as much as straight people are. If a straight person walks into church, and they are serious about discipleship (because church and discipleship should be synonymous), and they have a pornography or gambling problem, they will be serious about rectifying the problem. Yet, still there’s grace. Many of us have our secret sins that only we and God are aware of. It’s between us and God. But let’s not call it “all good.” It defies not equality, but our relationship with the living God. “Equality” might wish to portray that homosexuality is not a sin. But it misses the mark of God’s intended design. Yet we all struggle with sin. Why should my variety of heterosexual sin be any more palatable to God than your homosexual sin?
For any Christian, especially — given the grace God has extended to them; that they have received willingly and with open arms — to call other Christians “narrow-minded, judgmental, deceptive, manipulative” is just self-righteousness at its poignant worst. The truth is we are all narrow-minded, judgmental, deceptive and manipulative. We are infected and infested with such propensity to sin. It is aberrant hypocrisy for a church leader to take such a stand. How can an attempt to love one part of the community be an excuse to hate upon another part of the community? Who anointed this leader to be judge? Who is being narrow-minded, judgmental, deceptive and manipulative now?
The final part of the sandwich board that rankles is “IN THE NAME OF GOD.” The name of the Christian God is, and has always been, linked with the Word of God — whether the Pentateuch in the days of Moses or the gospels which reflect Jesus’ day. The entire canon of Scripture is intrinsically linked with IN THE NAME OF GOD. (I’ll not venture into Islam here. I’ll stick with something of what I know.) Given the inherent link between Scripture and IN THE NAME OF GOD, how can people who have sought to diligently apply the Scriptures — as they are written — be implicated in a conspiracy that determines them to manipulate God?
***
To the two originating tweets (@huffpostgay and @phillipsan) I tweeted back “2 wrongs don’t make it right. Ok with AP’s stand, but doesn’t give him a right to ingratiate himself [with the LGBTQ community] at [other] Christians’ expense.”
***
We must be very careful when we state publically that we are Christian. We ought not to take the high ground, but the low ground. We ought rather not to judge, but to be judged. (Have mercy on me, Lord, and may those I criticise here have grace for me as I ask you, Lord, to imbue me with grace for them.) We ought to be careful that we practice what we preach. And, even when this is all said and done, we should be the first people to say, “God, forgive me and save me, afresh, a sinner!”
If we would love, we ought to just simply love, and not engage in hateful judgment. We cannot be selective in who or how we love. Our love ought to strive to meet the perfect standard of Jesus. We are always destined to be learning and never mastering.
© 2015 Steve Wickham.
Image Credit to Hel Bel.

Wednesday, June 24, 2015

Real Experiences Series – “Your Baby Has a Chromosomal Abnormality”


HOW do you possibly prepare for a moment that will, by its very nature, blindside you? You can’t. It will sweep you off your feet and away with the torrent you are taken. Such is a life, that will, for that season, be.
We waited on a call from a specialist medical team regarding the results from my wife’s amniocentesis — ordered because our 19-week ultrasound scan (images in the picture above) had identified life-threatening internal organ issues in our foetus. We had been building up to bad news for two weeks — and eighteen days and counting since the scan — yet nothing could have prepared us for what we were about to learn about our baby.
Sarah took the call. Fortunately, her parents were there as I was out running errands (including, getting her flowers). I opened the door and knew immediately something was wrong. Sarah ushered me into the bedroom and her parents took our son into the living room. Hardly a word was said…
We will never forget it. We sat there, about 5pm, at the end of our bed, simply stunned — feeling, yet feeling nothing at all; numb. 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! We were abhorrently sad, yet totally vulnerable in the midst of a mystery.
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 very dire internal organ issues, not uncommon in PKS children. 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. (Our baby would ultimately be stillborn.)
So our hopes suffered an interminable death that very moment. The more we researched PKS, the more our hopes plummeted. Our only practical solace at the time was support from the PKS community locally and globally.
We learned in our pain that very little can be done other than to be patient in the midst of moments that cannot be reconciled.
We learned that there is more sense in simply hugging and crying than in getting angry and even more confused.
We really did learn to be gentle with ourselves, and to be there for each other.
The main beauty of grief is we are able to experience what may only be accepted.
Acceptance of our grief forces us to grow in our acceptance of reality and life.
© 2015 Steve Wickham.