Living in Black and White

Guest Post by Anna Bennett

Anna is an old friend of mine, and we are really honoured that she’s made the time to write this piece.  It’s longer than my usual blog posts, but I’m sure you’ll see that it’s more than worth it.  Thank you, Anna, for your honesty and for sharing part of your story with us.

Part One: The First Year

Nine months after my daughter Jemima was diagnosed with cystic fibrosis, Cat asked me if I would write a post about ‘how the Lord had helped me.’ My initial reaction was one of anger; our world had been shattered and how God fitted into this turn of events was beyond my comprehension. The assumption that God would necessarily be helping us as a family when, as I saw it, he’d not only ‘given’ my daughter a genetic disease but had abandoned me to deal with it in confusion and fear, made me feel all the more lonely and lost. Now, almost two years later and out of the fog of the initial diagnosis, I do have some thoughts to share. It has been and still is a steep learning curve and I am always in transition: one day full of energy and plans and another full of anxiety and fear. Life is unpredictable and my emotions are messy and non-linear. So, more accurately, here are some thoughts from me, today, about the first year of Jemima’s life, on a cloudless Sunday morning.

Jemima was diagnosed with cystic fibrosis (CF), a genetic condition that affects the lungs and the digestive system, at 10 days old via the heel prick test. We were already in hospital awaiting surgery for a bowel blockage so we knew something wasn’t right. I’d had a relatively eventful pregnancy with extra scans to monitor my gestational diabetes and Jemima’s bowel anomaly – which had been flagged up in my third trimester. Miraculously, she didn’t need surgery and we arrived home armed with medicines, instructions for how to give chest physiotherapy and advice as to how to ‘keep her healthy.’ We were to avoid people with colds and coughs, as children with CF are more susceptible to chest infections, and to avoid other people with CF, due to the risk of passing bugs between them. We were also told, paradoxically, that it was a ‘good time to be diagnosed with CF’ as advancements in medicines to treat the condition were coming thick and fast. And on top of that, we were to ‘treat her like a normal child.’

How can I describe everything that I was feeling? I can only approach it with metaphors. The world, previously benign or even beautiful, became sinister, dangerous and unpredictable. I felt wrenched from the life I’d always known and roughly deposited into a parallel universe of medical terminology and unknown threat to my tiny, precious daughter, who had dropped to under 6lb during her admission. The feeling of being scared to hold her – when she was in hospital and covered in wires and IVs – persisted when we arrived home. Every noise she made terrified me; any delayed bowel movement sent me spinning into panic. But at the same time, she was so unspeakably beautiful, so tiny and so perfect. Intense loneliness, grief and overwhelmingly, anger, characterised the first few months.

I had no idea where God was at this time or what he was doing. I felt utterly abandoned, even cursed by him. Sometimes well-meaning friends would share Bible verses with me which, if I’m honest, mainly served to make me more confused and angry. I felt as if I was in free fall, grasping for someone or something to hold onto. More painful still was that everything I’d thought about the character of God seemed to be shaken. In those times, it was the friends who would just listen to me who helped the most, and who prayed for me when all I wanted to do was scream and rage at God. Behind this white hot anger was the death of my belief that God’s goodness is demonstrated in blessings to us, here and now. Although theologically speaking I could have picked this apart, I still felt that my pregnancy was a blessing and a sign that God was ‘pleased’ with me. To learn that I carried a genetic defect that I had unwittingly passed on to my daughter (there was a ¼ chance that she would have CF – though we didn’t know this before becoming pregnant) was a blow. To discover that having another sibling with CF could put them both at risk of swapping bacterial infections, was heavier still. If God was trying to ‘teach’ me something – as is often talked about in Christian thinking – it wasn’t only ‘not worth it,’ it was downright perverse and sadistic. In hindsight, this was part of the inevitable flow of the grief cycle. I needed to ride out the rawest parts before coming to any conclusions about what life would look like for us and how my view of God had changed. Shock and trauma erased a good part of those early months and I see them now as if watching an old film, about someone else.

After about four months I suddenly felt as if I’d burst up from under the surface of the water. I started to look around me a little. It was Autumn and I remember noticing that the trees were bare apart from a few tiny yellow leaves and of having no recollection of them falling. I remember looking at Jemima, as if for the first time, and wondering who she was and who she would be. But the world was still in black and white, two-dimensional. I was afraid to keep the curtains open after dark. Christmas passed and Jemima remained well. She had gained weight wonderfully and I started to wonder if she really did have CF, as they said she did. I started to wonder if God had chosen to bless her by healing her miraculously, proving the doctors wrong. Denial and hope were given a rude awakening in the results of her ‘sweat test’ (the ‘gold standard’ for confirming a CF diagnosis) showed that, without a doubt, she did have CF. In the meantime, other people had ‘healthy’ babies, and I struggled to piece together my idea of a God who would bless others and not me; who would bless other children but not my daughter. I immersed myself in research about CF but the more I read, the more slippery the ground seemed. There were no concrete predictors of what life would look like for us and how this ‘invisible condition’ would affect her. I became addicted to trying to find the answers, trying to plug the leaks in my fractured world.

Then, I was persuaded to read a book called ‘The Life You Never Expected’ by Andrew and Rachel Wilson. For the first time, I felt that I wasn’t alone in feeling abandoned by God and in struggling to understand why this was happening to us. They articulate a response to suffering that did my heart good: that it is healthy to simply grieve when hit by one of life’s blows. It gave me permission to grieve, doubt and rage, and so begin the healing process:

“Many of us, fuelled by fears, doubts or insecurities, want to rush in with questions (‘how could God let this happen to us?’), answers (‘this must be happening because of this’), advice (‘we/you should start doing that’) or just plain silly comments (‘it will be alright’) …But there’s a place for just wailing about it, like Jesus did when his friend died, and like the psalmists seemed to do all the time.”

At the heart of the matter, my assumption that God was good, or at least of what good looked like, had been dissolved. What C.S. Lewis wrote in his Narnia series about the God-figure Aslan: that he’s not safe but that he is good, rang true. I didn’t feel that God was safe. Trusting a God who could allow my daughter to inherit a chronic genetic condition felt like a risky option. And if this was what good looked like, I wasn’t sure I wanted this sort of good God. Yet, where else could I go? The internet had failed me. Medical knowledge had failed me. Doctors, as I discovered to my horror, were not fonts of all wisdom and healing, but flawed humans with extra knowledge and experience, infinitely more qualified to treat my daughter than I am, but not infallible. Even they couldn’t tell me how the disease would manifest itself in Jemima’s body, much as I quizzed them about it.

It opened up the larger problem of suffering in general. Before having Jemima, my eyes were largely averted from the pain and difficulty around me; it was easier and safer to ignore it. Now, I can’t walk the corridors of our local children’s hospital without being forcibly reminded of is. I can’t see the toddler whose little hat speaks of ongoing cancer treatment or the child with the tracheotomy and nasal gastric tube without knowing something of the reality of this ‘new world’ of suffering. Amongst my acquaintance, this picture of suffering gathers pace; the little girl who dies suddenly of a rare genetic condition; the baby undergoing invasive tests to determine what is going wrong in her little body. As I once heard Don Carson say: “sooner or later, life will kick you in the teeth.” Suffering isn’t a matter of if but of when and how. I have gone through my entire life assuming that it’ll probably never happen, but when Jemima became the of 1 in 2,500 babies born with CF, this idea didn’t hold water.

As much as I resent being admitted into this new reality, I do believe it’s fundamentally the most accurate view of life. There’s nothing like being given a ‘life expectancy’ for your newborn to make you question all the notions you’ve been living by. Yet the reality is that life itself is terminal. It makes the idea of ‘life expectancy’ somewhat meaningless as, even if you don’t have a diagnosed health condition, an aggressive cancer could snuff you out, as it did one of our lovely CF nurses, between two of our bimonthly clinic appointments. And even if this doesn’t happen, death is bizarrely the only absolute certainty in life. As the apostle Paul writes in the book of Romans: “outwardly we are fading away.” As the artist Sufjan Stevens sings in ‘Fourth of July’: “we’re all gonna die.”

In the emotional chaos of the first year, I found C.S. Lewis’s ‘The Screwtape Letters’ helpful in articulating this alternative view of the world. It is a fictional series of letters from Screwtape, a senior devil, to Woodwood, a junior devil, advising him about how to tempt his ‘victim’ during a time of suffering. Here, the Enemy is God. This passage chimed with my experience of suffering in early months of Jemima’s diagnosis. I didn’t feel that God was there and I didn’t know what he was doing, but I know that he must have been there or I wouldn’t be writing this now:

“Of course, at the precise moment of terror, bereavement, or physical pain, you may catch your man when his reason is temporarily suspended. But even then, if he applies to Enemy headquarters, I have found that the post is nearly always defended.”

To be continued…