…her good deeds, such as bringing up children, showing hospitality, washing the feet of the Lord’s people, helping those in trouble and devoting herself to all kinds of good deeds. 1 Timothy 5:10
“Be warned, they’ve changed it a bit.” That’s what a friend said to me before I took my family to see the National Theatre’s production of The Lion the Witch and the Wardrobe in the West End back in August. This made me a little nervous. Had they removed Aslan? Did he not bother dying for Edmund? Would The White Witch Jadis turn out to be just misunderstood?
I was pleasantly surprised. It was really good! There was a strange line at the end about Lucy which muddied the otherwise-quite-clear message, but that’s not what I’m here to write to you about today. True to form, I’ve got thoughts about Mrs Beaver.
To me, there are very few more cosy and festive things to do than to read aloud together The Lion the Witch and the Wardrobe. And one of my favourite parts is when the children, cold, tired, hungry and afraid, arrive at the Beavers’ dam. (I love beavers anyway, they’re amazing! But that’s not the point.) They’re so welcoming and hospitable, feeding them a good hot meal, serving them tea and telling them about Aslan. It’s warming in all the ways.
Just as the frying pan was nicely hissing Peter and Mr. Beaver came in with the fish which Mr. Beaver had already opened with his knife and cleaned out in the open air. You can think how good the new-caught fish smelled while they were frying and how the hungry children longed for them to be done and how very much hungrier still they had become before Mrs. Beaver said, “Now we’re nearly ready.”
CS Lewis, The Lion the Witch and the Wardrobe, Chapter VII, A Day with the Beavers
This simple, satisfying meal offered by disciples of Aslan is the antithesis of the Witch’s Turkish Delight which left Edmund feeling sick and wanting more. The meal with the Beavers is a picture of living in the Kingdom of God. It’s not nothing! (Even Spark Notes agrees with me, if you think I’ve gone mad.)
In the book, Mr Beaver and Peter go out and hunt the fish while Mrs Beaver and the girls prepare the meal and lay the table. In the National Theatre production, Mrs Beaver is out in the woods as a secret agent, utterly capable, while Mr Beaver is back in the dam, cooking the meal: a vegan hotpot. He’s also repeatedly foolish and incompetent and the butt of several jokes.
Why do this? Is it just a joke? I feel like the vegan hotpot touch probably is. But is our culture now afraid of presenting a female character as hospitable? Is it an insult to women to have them ‘just’ cooking a meal and ‘relegated’ to the role of hospitality? And what does it say about men? The strong, brave Mr Beaver was emasculated. These things seem subtle, harmless and even amusing. But they’re a rejection of what God has made. Husbands are usually physically stronger and thus able to go out and provide for their family. Wives are usually able to be mothers: to nurture, to make a house a home and to provide a safe place for weary wanderers. A culture which rejects God rejects this. CS Lewis did not, and neither should we.
Of course, women can work outside of the home and men can cook. Plus, being a vegan is not wrong! But in a culture that’s deconstructed both femininity and masculinity and doesn’t know how to rebuild them, I think we really need to embrace what God has said about the roles of men and women and not to be ashamed.
We all want to be welcomed into the dam. We all love it when Harry Potter gets to stay with the Weasleys, with Mrs Weasley laying out their clean robes on their beds and whizzing up lashings of mashed potato for dinner. So I ask you, do any of us want to be the Mrs Weasleys of the world?
I don’t know if you’ve seen the latest adaptation of James Herriot’s All Creatures Great and Small. (For non UK readers, these are semi-autobiographical stories of life as a rural vet in Yorkshire.) The house they all live in is off-the-charts beautiful. There’s always a hot meal, a newly mopped floor and a warming fire. Who doesn’t love it when Mrs Hall, the housekeeper, provides yet another warming fry-up for the vets after a long night out on the hills? We all want the good roast dinner, the nice cup of tea and the clean clothes, neatly folded. Don’t we see the value of it?
Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. Hebrews 13:2
But are we willing to be the Mrs Beaver, the Molly, the Mrs H? I hope so. Don’t despise it. There’s such power in it. The world calls it needless drudgery, good for nothing. But it’s a lie. Hospitality is mighty, and Satan knows it. Why else would he attack it? So I say to you, Go Forth and Welcome. Who knows how God will use it for his glory?
And when they had finished the fish Mrs. Beaver brought unexpectedly out of the oven a great and gloriously sticky marmalade roll, steaming hot, and at the same time moved the kettle on to the fire, so that when they had finished the marmalade roll the tea was made and ready to be poured out. And when each person had got his (or her) cup of tea, each person shoved back his (or her) stool so as to be able to lean against the wall and gave a long sigh of contentment.
When my eldest was 2, I remember going to the Health Visitor for her “two-year check.” My daughter was at home with me all of the time at that age, apart from a toddler group we went to once a week. She was reading out the numbers on the height measure, and the Health Visitor said, “Oh, if she’s learnt her numbers already you should definitely get her started at Nursery.”
I found this a really strange thing to suggest. Where’s the logic? Since my daughter has learnt her numbers at home with me, what she really needs is to go to Nursery? Surely her number-knowledge was evidence that, lo and behold! Children can learn things at home, too.
When I had teenie-tinies at home I couldn’t afford to go to any of the groups that were going on all over my pocket of London. Gymboree, Baby Yoga, sensory classes – they’re all just words to me. I only slightly know what they mean. Never been. I also didn’t really want to leave the house. Looking back, I think I should have gone to more free groups because I would have made some friends. But I didn’t.
We know a family with seven wonderful children. If anyone can be called parenting experts, they can. I remember the dad laughing to me once about an advert he’d seen in a local cafe for a Baby Rhyme Time they were hosting. He said something like this, “There’s a middle-class angst that you must go to a class in order for your children to learn anything. Instead they could just sit at home and whack a saucepan with a wooden spoon.”
I’m not knocking groups. I think they can be life-savers for parents. But now that the groups are all cancelled, please don’t panic. Many of us (myself included) love a schedule. We love something we can measure, or tick off a ‘to do’ list. Tasks we can complete. Twelve hours a day with a toddler, some jigsaws and the housework is no such experience. However, please be assured that while the struggle is yours, it’s probably not theirs.
If they’re with parents who love them and talk to them and sing with them and laugh with them, they’ll be learning all sorts every day. Get them counting stuff in the house, drawing stuff, colouring stuff, baking stuff and pretending stuff.
I know the lack of structure is overwhelming. Activities you hoped would take the morning take 10 minutes (plus 30 mins clean-up). I know it’s hard. But don’t add to that the pressure that your children are missing out because you’re not going to Story-time at the Library. If you can read, they don’t need Story-time at the Library.
Having said all of that, if you’re missing your toddler group I recommend Junior Jivers to you. I’ve never been (see above), but I have confidence that it’ll be a treat. You have to watch it live, but hopefully you can fit that into your schedule! It’s on the Faith in Kids Youtube channel, 10.30am (BST) on Mondays, Wednesdays, Thursdays and Fridays.
Happy New Year, beloved readers. As you think about the year ahead I don’t know if you feel that change is afoot, but for me 2019 was a year of change. Back in September I started a part-time job. Aside from some admin jobs I’ve done that worked around my children at home, this is the first time I’ve been in paid employment in nine years.
I’m working in a secondary school (high school), which of course is full of people. There are people aged 11 right up to nearly-retirement age. Hundred and hundreds of people. This is quite a contrast from my daily routine prior to working there. Looking after a three-year old, doing a lot of laundry, perhaps meeting up with a friend for a cuppa… this is in many ways quite a lonely season. I found it as such, anyway. I love spending time with my children, but the lack of structure and the lack of adult company was a challenge for me.
In contrast, a school must be one of the most structured places in society. Every minute of the day is accounted for. And if the timetable is accompanied by many rules which are strictly adhered to, then this adds to the feeling of – to me, anyway – a certain security. At work, I know where I’m supposed to be and what I’m supposed to be doing. I’m not free to choose. I’ve been told where to be and when. This, after 9 years of wondering what the best use of my day would be, is a welcome relief.
You might think I’m mad. Some people hate structure. However, I notice that the routines and the rules do make most of the students feel safe. So I don’t think I’m too weird! So anyway, here are some observations based on my transition from Stay-at-Home-Mum-of-Four to Working-Mum-of-Four:
The hardest thing about starting a new job has been that nobody knows me. It’s such a drag. Not that I don’t know them (although that’s something I’d like to remedy), but that they don’t know me. It’s a very lonely feeling. This got me thinking – how many people live in our neighbourhoods who don’t feel that anyone knows them? It’s a horrible feeling. And to be a Christian is to be truly known by the one who made you. (Psalm 139:1) What a wonderful truth. I’ve never really appreciated it properly before, and I’m so thankful to God that he knows me. I wonder who I could get to know better in the coming months – maybe in my church or on my street.
The years at home are short. If you’re working part-time or having given up paid work completely to be at home with your children, I know it can feel like a very long time. Looking at leaves, counting aeroplanes and playing the shopping list game again can really slow down time. But having come through that season (sort of), I can assure you that it is not long at all. It means everything to our children – it’s all they’ve known so far – and they’ll benefit for the rest of their lives. But to you, it’s one line on your CV that can be explained to a colleague in one short sentence. (Don’t expect them to ask you any details, either.) And just thinking pragmatically – there are, Lord willing, many years left to be ‘at work.’ This week a boy at work asked me how long I thought I’d work at his school. I said it could be for another thirty years – and by then he will be in his forties, perhaps sending his own children to secondary school. So what’s five or ten years in the grand scheme of things?
Anything new is very tiring. You’ve got new people to process, new systems to get your head around, and you might need to adjust many other things in your life to compensate. (E.g. you might have to spend your evenings, rather than your afternoons, making Ziggy Stardust costumes – or is that just me?) So cut yourself some slack. Try not to fill the diary. And get to bed early!
I’ve written the following post to support Compassion UK’s Different Path Appeal. They are raising money for pregnant mothers in Togo.
In the UK, 1 baby in every 250 born will sadly not live to see their 1st birthday.
In Togo, it’s 1 in every 20.
In the UK, the chances of a woman dying in childbirth is less than 1 in 12,000.
In Togo, it’s 1 in every 58.
Why is this so? It’s easy to assume that the reason my children and I are alive and well is that we haven’t had many complications or medical issues. But in my case, that’s just not true.
I always think of my children’s medical history as being very uneventful, but with four children there are always going to be stories to tell. Like the time when I was in A&E with two of my children at the same time, for completely separate reasons. That was a weird day.
But the truth is, it’s so easy to take for granted our good health which is only down to the medical treatment we’ve received in the UK. We thank God for the NHS, and for providing clean water and good food for us every day. Here are some examples of how we’ve been saved by modern (or you might say Western) medicine:
(This is not for the faint hearted. Please do not read if you’re squeamish. I’m writing this to help highlight how wealthy we are, but normally I wouldn’t overshare like this.)
The birth of my first child was pretty long and a little complicated. After labouring for about 23 hours, she was born by emergency C section – necessary due to the position of the baby. Had I been far away from a hospital and without assistance, I would probably have kept pushing for days until eventually the baby died. I’m not sure what would have happened to me. I’m no expert, but I assume the risk of prolapse and infection would have been high if not certain. This may have prevented me from having further children, even if I had survived. I find these facts overwhelming.
I stayed in hospital for five days with my eldest – we were finally discharged after her jaundice had cleared up with the help of a UV lamp.
In all subsequent pregnancies I was treated as high risk due to my previous C Section. This meant I received extra care and attention and the threshold for doing a C Section was much lower. This was all done to protect me and my babies.
I lost my second child in the first trimester. We are thankful for the gentleness and compassion of the Early Pregnancy Unit at our local hospital.
Then came my second full-term baby, who was born via normal delivery – hooray! After his birth, the midwife noticed that I had a partially retained placenta. I’m so thankful for her eagle eyes, because if I’d been sent home this could easily have led to an infection. The bit of placenta still in my womb was removed manually by an obstetrician. Sorry, I did tell you not to read this if you’re squeamish.
The next one was pretty straightforward. He needed a hip scan because he was a big boy, but that was just a precaution. In fact, in physical/medical terms he has been our straightforward child!
Then came the lovely Martha. Born via normal delivery. She developed mastitis at 3 weeks old and needed antibiotics.
All of my children were born in a hospital which is at the bottom of the street – it’s about a 10 minute walk. Call that 20 mins if you’re pregnant. The women in Togo often don’t go to their antenatal appointments, and less than half give birth with a skilled birth attendant present. This is often because access to a medical centre is so difficult. It’s too far away, it’s too hot and – of course – they’re heavily pregnant.
I’m not going to recount every medical treatment my children have received, but I will say something about antibiotics.
My elder son who’s now 7 has had a few trips to hospital. He broke his leg just in time for his 1st birthday, and he got impetigo the following Christmas. This meant he had a horrid-looking boil-blister thingie on his face, which looked like it would never go away. Enter antibiotics. Within days it had faded to a pink patch, which quickly went away completely. I asked my GP, “What if we didn’t have antibiotics?” He said that the bacterial infection would spread, and get into his bloodstream, and would present in different patches all over his body. He also said that this is why King Henry VIII ended up with a hole in his nose. So you could say, and I will, that my son is in some ways richer than King Henry VIII.
Why am I telling you this? Well, I expect you could tell similar stories of how the course of your life and your children’s lives have been affected for the better by medicine. I haven’t even mentioned the plastic surgery my daughter received, aged 2, so she wouldn’t be scarred for life. Nor the precautionary ECGs that two of my children have already received during their short, uneventful lives. I think it’s important that we remember to thank God for providing these people and these medications and treatments – what an amazing blessing!
And let’s remember those who don’t have access to care like this. It can be overwhelming to think about, but it doesn’t mean that we should turn a blind eye. The Lord cares about the poor and the forgotten. He hates injustice. It’s easy to feel helpless, but we can pray for those women and ask God if he wants us to do something for them. Maybe we could go without something this month and donate the money to the Different Path Appeal. Please click on the link and read about what Compassion UK are doing to help women and children in Togo. I don’t mean to be controversial, but I think we know that suffering children are more important than, say, scorched cathedrals.
23 Away with the noise of your songs! I will not listen to the music of your harps. 24 But let justice roll on like a river, righteousness like a never-failing stream! (Amos 5)
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.
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.
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.”
I had a baby. Her name is Martha. Martha Grace Brooks. She arrived on 7th April. (Why Martha?)
What a humbling experience it is to have a newborn baby. You hope you slightly know what you’re doing a bit more with number four, and maybe you do but still not nearly enough. And you also can’t predict what might happen with this specific baby. My baby got mastitis. No, I didn’t know that could happen either. Neither did the Receptionist at A&E. I had to argue my way in!
One day, around week two I think, my 6-year-old daughter asked me this: “Why are babies born as babies? Why aren’t they born, bigger, like one or six or something?”
I think the question behind that question is, “Why does it have to be so bloomin’ hard? So much crying from baby and mum, so little sleep, so many dirty nappies!”
What would you have said? I was caught off guard and in my semi-conscious state said something about it being good for us to be humbled as parents, and also that we don’t always know why God makes things the way he does, but he is wise and we are not. Not the best answer but I think it was at least true, so could have been worse.
But I’ve been thinking about it a bit more, and I suppose there are several reasons why the Lord created us to be babies first. And we know that he glorifies himself in creation: when we look at his world, it shows us what he is like (see for example, Romans 1:18-20). So what can I learn about the Lord from my newborn baby?
Well one thing I have learnt is that in some ways my relationship with my child is a picture of God the Father’s relationship with me, his adopted child. As I look at her in her vulnerable state, relying on me for everything, and really giving nothing back in return (she isn’t even smiling yet), I can remember that I’m in a similar position (although more extreme) before my Heavenly Father:
My heart is not proud, Lord, my eyes are not haughty; I do not concern myself with great matters or things too wonderful for me. But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content. Israel, put your hope in the Lord both now and forevermore. (Psalm 131)
As my baby trusts me, I can learn to trust my Father in heaven.
New parents often talk about the extreme emotions they feel for their newborn child, and how surprising it can seem that they are capable of such passionate feelings of love and protection for a little bundle of life. When I feel like that, I can remember that this is just a mere picture of the Lord’s feelings for his people. Look at how he spoke to his people through the prophet Isaiah:
As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem.” Isaiah 66:13
The Lord in his mercy is using the picture of motherhood to explain to his people how tender his loving kindness is. And of course, his love is perfect, unlike the selfish, tired and grumpy version I offer to my own children.
I’m sure there are many more wonderful lessons about God which can be seen through nursing a newborn, but I am very tired and can’t go into them right now. If I go on any longer, I am bound to say something heretical by mistake. I also should be doing some housework and/or attending to my two year old, who is instead watching Bing.
So I will leave you once again with the words of that great Australian theologian of our time, Colin Buchanan:
“(One two buckle my shoe)
God loves her children like the chookie loves her chickies,
The mother hen will gather them underneath her wing.”
(See also Matthew 23:37 and Luke 13:34)
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Here are some thoughts from Week 7 of my pregnancy – mid August – because we so quickly forget what it’s like!
They say when you’re pregnant, more blood has to pump around your body. Is it possible that I can feel that happening? I’m incredibly thirsty, inconceivably tired, and keep getting short of breath when I move.
This week I had seven friends round for a dinner party. Does it count as a dinner party if we ordered fish and chips? Of course not. We didn’t even foot the bill. When one friend left she said, ‘thank you for eating your fish and chips with us’ which was exactly what I’d done. (It was actually a great evening. I would highly recommend such measures when you want to see friends but are completely wiped!)
I keep forgetting things. The other day I texted my friend to tell her we’d eaten at our new breakfast bar (I know, I only text urgent news). Half an hour later she mentioned it and I asked her if she’d been watching us through the kitchen window. Rather a wild accusation! She said, ‘No… you told me.’ Embarrassing.
I keep crying. I was reading an email out to my family about a friend’s son recovering from surgery, and I burst into tears. Well that’s quite a reasonable response, if a little out of character. I also nearly cried when trying to decide if the aforementioned breakfast bar was big enough or not. Definitely not reasonable.
I keep wanting to eat spaghetti hoops from a tin (I found some at my mum’s today – wolfed them).
Why am I telling you all of this? Well, my body and mind are falling apart, which usually only means one thing: I’m pregnant.
But despite all of this evidence (as well as the positive pregnancy test – I’m not crazy), I still worry that maybe I don’t feel pregnant enough. I’m seven weeks, which feels like a long time but then it’s not really. I lost a baby later than this back in 2010. I’ve always thought it would be great to find out you’re pregnant at around 16 weeks, when you’re beyond the “danger zone” and can tell all your friends. But of course, that’s never happened to me. I always figure it out at around 4 or 5 weeks, and then can’t stop thinking about it until I take a test. Then you need to wait a good couple of months before you get to see the miraculous heartbeat on the screen, and explain to everyone why you’ve been behaving like a complete nincompoop with the energy of a 93 year old.
So that’s the stage I’m at now. I occasionally panic that the baby isn’t OK. I read about the harvesting of foetal body parts and consider the grave injustice of this world. Why do some people have to suffer childlessness and loss, while others who don’t want children are blessed with fertility? What a mess this world is in. And since this world is in such a mess, do I really want to bring another child into it? Well if I don’t, it’s too late now. But of course I do. I already desperately want this child to be healthy, and safe, and happy in the Lord.
And then other times – particularly between midnight and 7am – I panic at the thought of having another person determined to interrupt my sleep. Plus what if I don’t give enough attention to each of my children? And a hundred other concerns. So thus far pregnancy has taught me to pray, and trust in God’s oft-baffling but ever-true sovereignty.
Reading this now, early October, I’m thankful that even when my moods, senses, family size and body shape change, God never changes. The gospel is still true and God is still just and good, even when I’m eating spaghetti hoops out of a tin and crying at the news, when I forget I invited someone for lunch or I fall asleep on the sofa at 8.30pm.
Enough nonsense, here is some relevant truth from Walter C Smith:
Immortal, invisible, God only wise,
In light inaccessible hid from our eyes,
Most blessèd, most glorious, the Ancient of Days,
Almighty, victorious, Thy great name we praise.
Unresting, unhasting, and silent as light,
Nor wanting, nor wasting, Thou rulest in might;
Thy justice, like mountains, high soaring above
Thy clouds, which are fountains of goodness and love.
To all, life Thou givest, to both great and small; In all life Thou livest, the true life of all; We blossom and flourish as leaves on the tree, And wither and perish—but naught changeth Thee.
I met someone last night who said all of her friends are having their first babies. In case you’re in the same boat, here are some thoughts for new mums, written a year ago for my lovely friend, Charlie:
Here is a letter to my lovely friend Charlie, who is about to give birth any day now. It’s a bit honest, but I hope you like it. It seems wonderfully appropriate, one year on from writing about my own struggles with my first newborn (Push, Push, Glide), to post this here.
I’m sitting in a café (had free coffee voucher – bargain!) and a lady next to me has a teeeeeeny tiny baby! He is very cute and drunk on milk. Everyone is gazing at him. Mum is probably exhausted and wondering when the baby will next need feeding. I’ve found that there’s a big old difference between actual motherhood, and motherhood from the outside looking in.
You’re about to have your first baby! You know that already. I’d love to give you loads of advice and tips. I’m sure all of your mum-friends will…