Coming Up For Air

Last week I introduced you to Anna, whose daughter Jemima has Cystic Fibrosis.  Here she shares Part Two of her journey as a mother.  Thank you again, Anna, for your honesty.

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I’ve been deeply humbled and encouraged by the response to the first post I wrote for Cat’s blog. It cost me to pull myself back into those black and white days but I’ve been amply repaid by the kind words I’ve received and in knowing that I’ve not been alone in these feelings.

Two and a half years on and life looks very different. Jemima is a fully fledged little person, desperate to communicate from the moment she formed her first ‘oooh’ sound, determinedly social, a blur of life and energy. She plays hard, sleeps soundly and is chomping at the bit to start nursery in the spring. We do weekly tennis, gymnastics, trampolining and music classes, as well as a monthly running club and swimming whenever we can. We do library visits, craft sessions, playdates and lots of park trips. She loves her stuffed cats (including an eccentrically named feline called Cupompom: like cucumber + pompom), role playing with Duplo characters and bouncing on her 4 foot trampoline with her stuffed frog. Her favourite books are currently ‘Zog and the Flying Doctors’, ‘P is for Potty’ and ‘Toad Makes a Road’. Her favourite colour is green and her favourite foods are bear paws and smoked salmon. Her eyes are light blue, her hair is honey coloured and she has a double crown. She has enormous tantrums which she recovers from by lying on the sofa with her dummy and blanket. She twiddles her hair to fall asleep. She is both a very ordinary and a very extraordinary girl.

The process of coming up for air after Jemima’s diagnosis has been long and hard. People sometimes comment on how time has flown. For me, it has involved the longest nights I’ve ever known: nights I spent expressing milk and watching dawn break over the city while a newborn Jemima slept on the ward. Our life before her seems so remote. We have been extremely blessed that her health has allowed us some respite to adjust to our new life, our new world. We have not had multiple hospital admissions up to this point; many children have. My heart and all my respect goes out to the parents of these children. Our one admission for viral bronchiolitis (unrelated to CF) sent me spinning back down into the dark again.

As my dad often reminds me, it costs us more to take care of Jemima. It takes time and energy to administer daily medicines, inhalers and physiotherapy. It takes creativity to think up games that make these things fun or at least acceptable for a toddler. It takes energy to chase her around, bounce with her and have tickle fights to help her clear her chest. It takes patience to squeeze apple puree onto a spoon and sprinkle on Creon around 20 times a day. It takes time to make sure that the house is clean, to help protect her lungs from bacteria and dust. It costs us financially to buy the high calorie food that her body needs. It costs us emotionally to hold her for blood tests and cough swabs and to explain to her why she can’t gather armfuls of rotting leaves like the other children because it could make her poorly. It costs us socially to avoid people with coughs and colds. Chronic anxiety wears my patience with her and with Jonathan. As much as it costs us, it costs some parents much more to care for children with more severe or complex conditions. But as my dad also reminds me, the rewards are great. I am amazed every day by Jemima’s resilience. Despite having more to complain about than some, she is not a complainer. She’s physically tough. She’s emotionally mature. She does her treatments and takes her medicines (mostly) without complaint. She’s not afraid of medical professionals or of clinic visits. If she has a procedure she dislikes (cough swabs are currently the enemy) she cries but gets over it. She’s bright, optimistic and curious. She’s agile and physically fit. To her, life is full of people to play with and parks to play in.

This sends me back to my original question and one that I’m never far from: how do I know that God is good? People often say that God is good in response to good things that happen to us. But to me there is a big difference between saying that God is good in response to our circumstances and saying that God is good irrespective of what happens to us. The logic is fairly simple: if the goodness of God is a consequence of our circumstances we must assume, if circumstances go awry, that God is not good. If God’s goodness is validated by our circumstances, we must assume, if circumstances go awry, that he’s either displeased with us, that we’ve strayed from his ‘path of blessing’ or that our circumstances are beyond his control. None of these options are comforting. I know that God is good not because I feel that it’s true but because I believe it is so. Fossilised somewhere in my memory are the words of the Psalm we used to recite at church when I was a child:

For the Lord is good and his love endures forever;
his faithfulness continues through all generations. (Psalm 100:5)

I wouldn’t say that this feels ‘comforting’ exactly but I do believe that it is true. The knowledge that God is good, irrespective of what happens in my little life, is both liberating and terrifying. In many ways I would prefer a clearer cut and more directly applicable system: that God would bless me and keep my daughter well and by this, show his goodness. But I know in my gut that the truth lies with Job, a man who suffered and who wrestled with these questions. Job asks:

Shall we accept good from God, and not trouble? (Job 2:10)

Job did everything ‘right’ yet he lost everything he had. His friends told him to shape up or ship out but still he persevered in believing that he wasn’t being punished for his sins. And he was right.

Fast forward a few thousand years and the question remains: if God is good regardless of my circumstances, how can I know that he cares? I go back to the words of John:

This is how we know what love is: Jesus Christ laid down his life for us. (1 John 3:16)

These are hard truths. They challenge the very basis of my faith. They are hard because, as my pastor says, suffering has become personal. But there is great relief in knowing that the fact that my daughter has a genetic disease is not a sign of God’s displeasure with me or with her. He is still good. He sent a saviour in Jesus, his precious only son. The fact that Jemima has been very healthy so far is an indescribable blessing but it’s not the reason that I know that he is good. It’s taken the words of the Bible and the words of some wise people who have suffered more than I have to bring me to this conclusion. It has taken its toll on me and has left a wound which – although I know it will never heal this side of the veil – contains deep and precious truth.

I believe that God is good because he says he is and because he sent Jesus to bring ultimate healing for the sufferings of the whole world. Genetic diseases should not be passed on through generations. Babies should not be stillborn. Children should not have to make bucket lists. Add to this a million other painful tragedies and injustices. God cares, he is good and in the end he will bring about restoration:

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. (Revelation 21:4)

This is the end of the story and it’s one that I long for exponentially more than I did before I had Jemima. As for our story, I don’t know how it will play out. There are now medicines that aim at fixing the faulty gene that causes CF on a molecular level. There are also other tragedies, unrelated to CF, that we’re not guaranteed to be spared from. I want Jemima to live a long, full and joyful life. I want her to know Jesus. I want to protect her from suffering. The knowledge that I can’t protect her from life’s blows has been brought home sooner for us.

I am still angry. As the Hulk says in the film ‘Avengers Assemble’: “I’m always angry.” But I am also grateful. As much as it costs us to take care of Jemima, our victories are all the sweeter. Someone has likened living through a CF diagnosis to climbing a mountain of slick sh*t with a breathtaking view. I don’t take any of Jemima’s milestones for granted. Her first swim and her first stomp through the snow were deeply emotional and exhilarating for me. Every night that I go into her room and see her sleeping peacefully brings intense thankfulness that we’re not in hospital; that I can enjoy a glass of wine and sleep in my own bed instead of on the hospital floor amidst the bleeping of machines and slamming of doors. (Those of you who’ve been there will know all too well what I mean.) Every morning when she calls me into her room at 6am because “Mr Golden Sun is awake!” is tinged with relief and thankfulness. The breath in all of our lungs is a gift. Life is a gift in all of its fragility.

 

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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.

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Jemima was born in June 2015

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…