Come on Over

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Did you have a wedding gift list?  Oh the joy.  It’s particularly satisfying if you haven’t got two pennies to rub together.  You get to go round a department store with one of those bar code guns (they’re probably not called guns) and scan to your heart’s content.  You choose plates and bowls and pots and pans, and look forward to all the entertaining you’re going to do when you have a home that’s just yours.  I remember hoping and praying that we’d have a really welcoming home, showing hospitality and blessing our community.

And this sort of happened.  I’ve certainly got better at it over the years.  And as I’ve learnt how to cook, and how to tidy up, I’ve also learnt that what really matters in hospitality is that you love people.  That can be costly, but not in a monetary sense.

We are, as Christians, commanded to be hospitable.  It’s one way we show God’s love to others.  Since God is love and we are his ambassadors, it’s pretty important that we show hospitality.  But you don’t have to take it from me:

Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practise hospitality. (Romans 12: 12-13)

Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. (1 Peter 4:8-9)

It seems from these verses that hospitality isn’t an optional extra, for those who are really good at cooking and into that sort of thing.  I don’t think, by the way, that you need your own home or your own kitchen or a dinner table to show hospitality, but since this is a parenting blog I’m assuming you do have somewhere to cook and eat food.

So going back to my enthusiasm as a newlywed – life has changed more than a little since then.  Life got busy.  My home got smaller, and the number of inhabitants got bigger.  Now when people come through the front door, they have to trample past my children’s bedroom door.  I can’t really expect them to come through the living room window (no… I really shouldn’t).

Plus, you know, I’m tired from feeding and looking after my children all day every day.  Doesn’t that count as hospitality?

No. It doesn’t.

I’m not trying to make anyone feel bad, but I’ve noticed something about hospitality.  We all find reasons not to do it.  We all seem to think that we would do it under more suitable circumstances.  When the children are older.  Once we move that wall.  When we get an oven*.  Once I’ve had big clear-out.  My home just isn’t welcoming enough. Nobody would enjoy coming here.

Can I suggest that we should all remember that we’re in a spiritual battle?  Since we’re commanded to be hospitable, we can be sure that the Lord will use it for his glory.  And therefore we can also expect that we’ll be tempted not to do it.  So let’s fight that battle, instead of just surrendering to the inconveniences.  It might be that you’ve had some hospitality disasters.  In fact, this is pretty likely.  But that’s OK.  We pick ourselves up and fight on.

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Also I’ve noticed that people on the receiving end of hospitality are rarely aware of our alleged shortcomings.  If you think your house is too dark or too messy or too small or too full, it’s unlikely that the person coming round for a cuppa will think so too.

I was amazed to hear from a friend recently that she’s never thought that my living room was not very conducive to hospitality.  I mean, really amazed.  It just shows that my perception of my home is not the same as my guests’. (My living room, by the way, has nine walls.)

I remember another friend saying to me, “I either need to keep my flat tidier, or lower my standards of how tidy it needs to be before I invite my neighbour in.” I think she put it better than that but hopefully you see the point.  If your house is too messy, then tidy it.  If you can’t tidy it, then invite people over anyway.

Maybe you think your own family will feel neglected if you have people over.  But let’s not underestimate how much our children will learn from seeing us love people, especially people who aren’t like us.

The Lord doesn’t make commands and then add, ‘when it’s convenient.’ He himself invites us to a feast – was it easy for him to make that happen?  Was it convenient for Jesus to leave his home in heaven to come down into our neighbourhood and invite us to his party? Were we grateful guests? Were we attractive guests? Did that stop him?

What a blessing we’ll be to our communities if we pray to God and ask him to help us to be more hospitable.  Maybe we need to pile everything into the kitchen sink before the school run so we’re able to invite someone in for a cuppa.  Maybe we could start by inviting someone for lunch after church.  Tinned soup and supermarket bread goes down a treat, in my experience.

Let’s not think that, if we’re parents, we’re exempt from showing hospitality.  It might be really hard for us, but the Lord sees that even if nobody else does.  And remember that if your guests don’t have a family, your family will most probably be a blessing to them. By God’s grace, the family home is a powerful thing.

I do believe that God wants to help us grow in hospitality. Who knows what blessings he has in store?  And when it goes wrong, let’s laugh it off, dust ourselves down and try again soon.  Grace be with you!

For more on this, I’d love to recommend ‘The Ministry of a Messy House’ by Amanda Robbie.

(If the title of this blog post made you think of Shania Twain, then we are on the smart wavelengh my friend. Ah – ah – aoooh…)

*we did once spend some time in a very big house with no oven. We used a microwave.

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Go the Distance

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After a run in the snow.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy that was set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. (Hebrews 12.)

I’ve been doing a bit of running.  I started with the Couch to 5k app about a year ago, and now I try to go to my local parkrun* when I can.  I’m very slow, but it turns out that even if you’re slow, it still counts. It’s better than not running.

I don’t know if you’ve ever been to watch a marathon, or any other long distance race.  About ten years ago my parents, husband and I went to watch the Great North Run (a half-marathon) because my brother and his wife were running it.  It’s such a fantastic day out.

There’s something very moving about watching people run and cheering them on.  Many people wear their name on their vest so you can call it out as they run by.  We discovered that one of the best things to shout is, “Keep going, [Dave]!  You’re looking really good!”  It usually made people smile.

We positioned ourselves quite near the end of the race, so some people we saw were really flagging.  And of course, what do you do when you see someone who looks half dead?  You cheer all the louder!  “Come on, keep going!  Don’t give up! You can do this! Not much further!”

I think one of the reasons I got so choked up about all of this was that it brought to mind the fact that the Christian life is like a race.  Scripture mentions this several times.  It’s a race in which everyone who crosses the finish line receives their reward, whether they were elites at the front or power-walkers at the back.

Sometimes we go through seasons in our Christian life when we’re flagging.  We look like we might not even finish.  Sometimes this happens because of big life events, like the birth of our first child, or an illness in the family, or the death of a loved one.  Sometimes it’s caused by other factors.  But at those times, we need encouragement to keep going.  We need our friends to cheer us on and remind us why we’re in this race and what the prize is at the end.

At my local parkrun on Saturday, there was a group who all knew each other from a running club.  Some of them finished fifteen or twenty minutes after others.  But the last ones to finish got the biggest cheer, because in some ways it’s more magnificent when someone who’s struggled more crosses the line.

Think of your friends who have struggled in this Christian race.  The ones who need reminding to come to Bible study, or who need persuading to come to church.  The ones who you’ve spent so much time with explaining the simple gospel over and over again, because that’s what they’ve needed.  The ones who you weren’t sure were going to finish.  How overjoyed will you be to see them cross the finish line!  When you see them in the new creation, won’t you be thrilled that they made it?  And won’t they be thrilled that you didn’t stop cheering them on?

To God be the glory – it’s by His grace we’re saved and begin the race, and by His grace we make it to the Finish.  However, we do also have a responsibility to make it to the finish line, and to help our brothers and sisters to get there, too.  Paul tells us, Run in such a way as to get the prize. 25 Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last for ever.”  It won’t be easy, but the prize is disproportionately rewarding.

Thinking of his death, Paul wrote: For I am already being poured out like a drink offering, and the time for my departure is near. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day – and not only to me, but also to all who have longed for his appearing.

I want to be able to say that at the end: that I’ve kept fighting; kept running; kept believing.  I want to receive that crown, so that I can cast it down before Him, lost in wonder, love and praise.

Let’s not get distracted or held back, by babies or wealth or sin.  Let’s remember that we’re not running aimlessly, but we’re heading for a goal.  Let’s remember that we’re in this race together, and we don’t want anyone to give up.

Keep going, sister.  You’re looking really good.

“I’m Ungrateful!”

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“That ain’t fair, miss.”

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.

When Snow Happens

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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.
(Proverbs 16)

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.

Oh Lord, establish my steps. Amen.

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No Babyccino

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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.

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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.)

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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.

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Thanks for Coming

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Christmas is so messy.

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.

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.