This is one of the most commonly used phrases in the classroom. Sometimes, when teaching teenagers in East London, I used to respond with a lecture about how they were absolutely right, things aren’t fair because they get an education they don’t have to pay for, in safety and comfort and with all the resources they need, while some children have no opportunity to go to school and have to slave away seven days a week just to survive. So no, life isn’t fair. As you can imagine, this went down really well.
It doesn’t take long for small children to learn to say “that’s not fair.” Some children I’ve met seem to begin each sentence with this phrase – I’m not sure they’re quite sure they’re even saying it. But it’s not just children. Of course, they’re only expressing an attitude which many of us, as adults, still have. We might not say that same phrase as much, but we might harbour resentments or appeal for sympathy because we, deep down, feel that things are not fair. “I’m fine, it’s just really hard because, you know, I don’t have a tumble dryer.” Or “It’d just be much easier if I had a car, that’s all.” Or “That’s good advice but I can’t do that because I don’t have the time/space/money/figure/teeth.” Poor me.
In our home we’re not allowed to say “that’s not fair.” Of course, people do say it, but I won’t just let that go unchecked. (There is, of course, a way to say “that’s not fair” and not be whinging, but I’ve never heard my children use it that way. When they say “that’s not fair”, what I hear is, “I’m ungrateful.”) Instead of being thankful for what they have, they’re looking at what someone else has or what they feel they deserve, and being discontent with their own lot. When I hear them say, “that’s not fair,” I try to have them rephrase it and apologise, e.g.
“No you can’t have another biscuit.”
“That’s not fair!”
“What you mean is, ‘I’m ungrateful that I got to have one biscuit.’ What do you need to say?”
“Sorry that I’m ungrateful that I got to have one biscuit.”
I’m sure you can find many flaws with this approach, but hopefully it’ll go some way to showing the children that nothing good (not even a biscuit) can be gained by being ungrateful and discontent. Lord, may they not become “that ain’t fair, miss” teenagers.
During Lent I’m reading through Proverbs and also The Way of Wisdom by Timothy Keller. There’s a lot in Proverbs about envy:
Do not gloat when your enemy falls; when they stumble, do not let your heart rejoice, or the Lord will see and disapprove and turn his wrath away from them. (Proverbs 24.17-18)
Keller writes about the German word Schadenfreude, which means joy in someone else’s sorrow/shame. You know, like tabloid newspapers? But it’s a problem we all have in our hearts at times. We might not want to be, but we’re secretly pleased when something finally goes wrong for someone. Or there’s the opposite, which is secretly being upset when someone else does well. What ugliness.
When I envy my friend’s gifts, house, cooking skills, church community, success at work etc. I’m actually being really unloving towards her. Do I get that? I know how it feels to be on the receiving end of envy. If you envy me because I can go on a super duper holiday, for example, you’re essentially saying that you wish I didn’t have that blessing. (And by the way, isn’t Social Media the perfect breeding ground for envy?)
That’s not love.
A heart at peace gives life to the body, but envy rots the bones. Proverbs 14:30.
A heart at peace is thankful to God. Comparisons and envy will destroy me. As Keller said, ‘envy is being unhappy at other people’s happiness.’ How horrifying! I think we know this is bad, but it’s good to be reminded. I also think that we don’t recognise this very well in children. Envy becomes an accepted part of life, and we can even plan things around it. We don’t challenge the child who says, “How come she gets to go there/do that, I’ve never been/done it, it’s not fair!” Or we even withhold good things from one child because we know the others will be envious. “I can’t let them go to that party/have that free drama class because it wouldn’t be fair on the others” (i.e. the others would have a tantrum about how unfair everything is). When they’re crying over someone else’s birthday presents we try to placate them by saying, “Oh well I’m sure you’ll get something nice for your birthday.”
“It’s only natural they should be envious,” we say. It is natural, but that doesn’t make it acceptable. As Christians, we wage war against our natural, sinful natures. Instead, we can encourage them to be thankful for their brother or sister’s joy and success, and we can remind them of everything they have to thank God for. If we train them early, what a blessing it will be for them later in life if they’ve learnt to be thankful for God’s grace in the lives of others.
For more on comparisons, please see here and here.
To humans belong the plans of the heart,
but from the Lord comes the proper answer of the tongue.
All a person’s ways seem pure to them,
but motives are weighed by the Lord.
Commit to the Lord whatever you do,
and he will establish your plans…
In their hearts humans plan their course,
but the Lord establishes their steps.
It snowed here. If you live in the U.K., you’ll have experienced snow this week. If you live somewhere else, you’ve probably seen it on the international news. I love snow, and living in central London we usually get short-changed on the snow. I’d have liked more. They cancelled the parkrun in Fulham, but that’s the only difference it really made to me. My brother, however, lives in Glasgow which has ground to a halt. Only Morisson’s soldiered on. The shelves soon emptied.
I know this chaos is the cause of much amusement for Scandinavians and Canadians and any other nation who has enough snow ploughs. But the truth is, we’re ill-equipped and so the snow does make things rather unusual. And it’s no laughing matter for people stranded in their cars on a motorway in Scotland.
Besides any actual risk to life, though, I actually like the chaos. Usually I love order (quite an affliction for a mother of four), but when all plans have to be changed because of the weather, it’s a wonderful reminder of one truth we usually ignore: we mere mortals are not in control.
We think we can control everything: what’s on TV, what food we eat, what school our children go to, where we live, how healthy we are, how many children we have, how long our journey will be, how successful we are etc. You only have to look at how stressed people get when they lose control of one of these things, to see how much we love control. In about 6 weeks’ time parents in England will find out which primary school their children have got into, and the news headlines will show outrage and panic as parents lament over their school place, despite having moved house and gone to church for 3 years just to get into St Juniper’s because it’s Outstanding. We do not like being reminded that we’re not in control. We do not like being reminded that we’re not God.
Don’t get me wrong, I find this challenging. There are plenty of things I try to control, and I get irrationally upset when I can’t. Sometimes the things we want to control are good things, like wanting our children to follow Jesus. Or even just wanting this meal to be a blessing and taste good. But my loving Heavenly Father does like to remind me that I’m not in control. He’s teaching me to trust him, to hold my hands up and say, “You’re in charge, and that’s a good thing!”
If it’s a blessing to be reminded that God is the one in control, then this is certainly a major bonus of parenting. If anyone can ruin your plans, it’s a wilful child. Sometimes through no decision of their own, but often deliberately, they don’t fit into my neat plan. Before you have children, you can plan how many motorway stops you’re going to have on a long journey. You’d never dream of a toilet break 15 minutes before reaching your destination.
I remember trying to go out and meet Mike one day when I was about 37 weeks pregnant with number 2, and number 1 was 18 months old. I physically couldn’t get her into the pushchair, partly hindered of course by my enormous mass. I had to phone him and say I didn’t think I could go out. That was a low point. Plans thwarted by a very small, tantrumy toddler.
We might plan our career out and then find that our child needs more care than we’d expected. We might plan where to live and then discover we’re expecting twins. We might look forward to cycling holidays and then discover our child refuses to learn to balance on two wheels. Or their obsession with dinosaurs means that museum trips will be more enjoyable. We hoped they’d come to watch football with us and it turns out they don’t like crowds, or football, or Middlesbrough FC.
Im so grateful that in the major, life changing things and in the small irritating things of life, The Lord not only sees it coming but has planned it all out from the very beginning. He is truly awesome.
A belated Happy New Year to you all! I’m not sure what happened to January. Let’s move on.
We live in Chelsea. It’s strange but it’s true. I grew up in an industrial town in the North East of England. Occasionally my children say things now which make me shudder slightly, such as:
“Mummy can we get some avocados?”
“Mummy can I have a babyccino?”
“I’m going for Chelsea FC.”
“Look, we’re nearly at Raffles!”
(If you’re not sure what Raffles is, it’s just a fancy night club which celebrities frequent. We went there once, but that’s a story for another day.)
Babyccinos are the sort of thing I would scoff and roll my eyes at before my children started drinking them. How pretentious! But one day I just gave in. Although they are just another way of trying to make children look like absurdly small grown-ups, they do have this going for them – they’re free. In some places, anyway. They’re also just frothy milk, so it’s not doing anyone any harm, unless you count my pride.
Now the thing about a babyccino is, it’s not actually a small cappuccino. It looks like one, so the kiddywinks feel grown up, but it doesn’t taste like one. It won’t make them like cappuccinos when they’re older. It’ll have no bearing on their taste for coffee. And that’s fine, because I have no desire to instill in them a love for coffee.
Sometimes, the Christian input children get can be a bit like a babyccino. It looks like discipleship, so it can make them look like Christians, but when they get older they’ll have no taste for the real Jesus.
For example, when I was at my CofE Primary School, we learnt to say “grace” before lunch. The prayer was “For these, and all Thy many gifts, we give Thee thanks our Lord, Amen.” Nothing wrong with that, although why the “thee” and “thy” I’ve no idea. I wasn’t at Primary School in the 19th Century. But I never, not once, actually thought about what I was saying. I used to say, “FORTHESEANDALLTHYMANYGIFTSWEGIVETHEETHANKSOURLORDAMEN!” The faster the better. I may as well have prayed it in Latin for all the meaning it had to me. It was a babyccino prayer. Once I grew out of saying it, I did not thank God for my food because I wasn’t thankful to Him.
Sometimes at church we can fall into the trap of making it look like the children have learnt something in crèche or Sunday School, when in fact nothing has gone in. They emerge with a beautiful craft about how Jesus Loves Me, or I’m a sheep, or A fish swallowed Jonah, but it’s just froth. The children haven’t actually heard God speak to them through his Word, by the Holy Spirit. But the parents are happy (for now), because their children look like Christians. (I’m really thankful that my children emerge from Sunday School usually craftless, having gotten to know God better through his Word.)
At home, we parents should be the ones bringing up our children in the training and instruction of the Lord. This is hard work, long term and messy. It requires prayer and huge dependence on God. Often it’s so tempting to settle for making them look and act like Chrisitans, rather than actually discipling them. Of course, only the Holy Spirit can give them new life and change their hearts, so we need to depend on His grace. But if I’m not looking at the attitudes of my children’s hearts, and instead simply dealing with their behaviour and habits, then when they’re older they’re no more likely to love Jesus than if they’d never had the babyccino Christianity I’ve been serving them for 16 years. In fact, I might have put them off him forever. They might be able to rattle off the Ten Commandments, or the Lord’s Prayer, and they might be on the serving rota at church. But hand them a cappuccino and they’ll say it just tastes bitter. They’ll opt for something else instead.
I do (really, really) want my children to behave nicely in church. I want them to know the right answers in Sunday School. I want them to be kind and have good manners. If you met them, you might not be able to tell any of that, by the way. However, what I want more than those things is that they would genuinely love the Lord Jesus Christ, and that they’d know how desperately they need God’s grace. Sometimes they won’t look like little Christians, because real discipleship is messy. But I’ll keep trying to remember not to opt for the easier, neater, babyccino version of bringing them up in the training and discipline of the Lord.
I’ll let you into a (non)secret: I’m not so good at housework. Right now I’m supposed to be cleaning, but as you can see, I’m not. And at Christmas, there’s more stuff around, plus there’s more stuff to do which in this home takes priority over housework. So our already-not-exactly-neat home is now even more messy. It’s littered with Christmas crafts, envelopes, scraps of wrapping paper and ribbon, and pine needles. Yesterday I had several ribbons sellotape to the sole of my slipper for longer than is reasonable before I addressed the issue.
It’s messy in other ways too. Around about mid October I begin to dread the Christmas fair. This year it lived up to my dire expectations, once again. It’s not that I disagree with it in principle, but rather it is too overwhelming for me and my kin. We cannot cope with it at all. This year, only half of my children cried throughout. I left in such a hurry that when I realised we had one toddler welly missing, I refused to go back in. “I’ll buy new wellies if I have to!” said I.
Here is a text I sent a friend the week before the Christmas fair:
“This week we had to bring in a cup of sweets each on Monday, email the school some photos of us doing some ‘extreme reading’ (but safely), bring in some bread from our culture tomorrow and a gift for the school fair, wearing our own clothes, on Friday… I’m always aware it would be less mad if I only had 1 or 2 children at school, so it’s not really the school’s fault. Plus it’s fun. Although the other parents seem confused too. ‘This time do we wrap it? Do they wear spots? Have I missed the shoe box deadline?’ (yes)…”
I will inevitably drop several balls in December. Last week I was supposed to watch my daughter’s gymnastics assessment, but I forgot. She was very gracious about it, but it didn’t feel good. I wonder what I’ll forget to do this week. Hopefully nothing life-threatening or childhood-scarring. And my poor husband is bombarded with crazy text messages as I try to get him to help me to remember everything.
However, the biggest mess I see at Christmas, as I experience this pressure-cooker of festivity and reflect on the year gone by, is in my own heart. I’m still selfish, I’m still trying to be self-sufficient, I’m still self-centred. God is changing me, by his grace. But folks, progress is slow.
And yet, God himself came down to meet me in this mess.
The tragedy of carol services is how overfamiliar we become with the awesome words of Scripture. I mean, just look at this:
20 But after he had considered this, an angel of the Lord appeared to him in a dream and said, ‘Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. 21 She will give birth to a son, and you are to give him the name Jesus,[f] because he will save his people from their sins.’
22 All this took place to fulfil what the Lord had said through the prophet: 23 ‘The virgin will conceive and give birth to a son, and they will call him Immanuel’[g](which means ‘God with us’). (Matthew 1)
He came down to save us from our sins. To deal with our mess. He came to be with us. I don’t deserve that, but oh how I need it.
Thank you, thank you, thank you Jesus. Thank you for coming.
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.
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.
I’m just kidding, I don’t write to Santa. That’s because he’s a big fat lie who drinks sherry.
At this time of year everyone asks what you want for Christmas, and for some that’s lovely and for others it’s really stressful. If you’re in the latter group, here are some ideas from me:
In no particular order:
None Like Him – this is a book about God, with short chapters and big truths, explained brilliantly by Jen Wilkin. She is really good at writing, and I don’t say that about many people. She has a gift and she’s using it to teach us how we are not like God, and that’s a good thing! I highly recommend this – get your best friend a copy too and read it together.
Prayer – Timothy Keller. The book absolutely blew my mind. The only trouble with it was that I wanted to read it about five times, but it took me a year to read (on and off) so there wasn’t much chance of that. You know I love Tim Keller – he’s fantastic. What a blessing he is to so many people. This book will inspire you to pray and then give you practical advice for daily prayer. Here’s some inspiration from the book about how the Lord Jesus sets us an example: Jesus Christ taught his disciples to pray, healed people with prayers, denounced the corruption of the temple worship (which, he said, should be a “house of prayer”), and insisted that some demons could be cast out only through prayer. He prayed often and regularly with fervant cries and tears (Heb 5:7), and sometimes all night. The Holy Spirit came upon him and anointed him as he was praying (Luke 3:21-22), and he was transfigured with the divine glory as he prayed (Luke 9:29). When he faced his greatest crisis, he did so with prayer. We hear him praying for his disciples and the church on the night before he died (John 17:1-26) and then petitioning God in agony in the Garden of Gethsemane. Finally, he died praying.
The Plausibility Problem – Ed Shaw. This book isn’t hot off the press (none of these books are), but I think this should be compulsory reading for any Christian who’s serious about obeying Jesus’ command to love one another. However, it’s not my job to set compulsory reading for Christians, so I’ll jus say it comes very highly recommended. It’s not just a book about loving people who are same-sex attracted*, it’s about how to love people and live as church family, as we’re called to do. It’s fascinating, it’s challenging, it’s very moving. Thank you, Ed.
Gilead – Marilynne Robinson. Oh my goodness, I read this a couple of months ago and it’s a book I didn’t want to finish. It won the Pulitzer Prize in 2005, which yes means I am very, very behind on life. It’s the memoire of a mid-twentieth Century pastor in rural Iowa, and if you like good writing and a good character piece, and especially (but not necessarily) if you’re a Christian, you’ll love this. She’s written other books too, which I should probably read…
Pilgrim’s Progress – John Bunyan. Right, so I’ll come clean. I haven’t actually read Pilgrim’s Progress. If you think that’s bad, then wait till I tell you that I think it was required reading for my English degree. It’s not on my Christmas list because I know exactly where it is on my bookshelf. You know when you’re in a Bible study and someone says, “This reminds me of Pilgrim’s Progress when..” and then gives a really poignant and relevant example? And you have to smile and nod because you’ve never read it? Well I plan, by the end of 2018, to be able to smile and nod sincerely, because I will have read it. Hey, I might even be the one with the insightful Bunyan anecdote. Maybe we could read it together – so to speak – next year?
If you’d like other ideas, click on the “Books” category and you should see my previous posts about books I recommend.
*This is how Ed Shaw describes himself. It’s all explained in the book!
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.”