A time to cry

It’s been a tough week.

I feel like I’m carrying a stone weight in my chest. Everything is hard. I cry often, but nothing seems to take away the pain at the centre of my being.

I know the diagnosis of autism for my son will be the best thing in the long run. It’s already helped.

But I’d kind of wrapped my head around it being ADHD. He is high functioning, and very affectionate (in an awkward, stick-insect kind of way) and I’d persuaded myself that ADHD was the answer to his rage, his argumentative streak, and the difficulties he was having in school. ADHD seemed more limited somehow, more manageable, its effects smaller (I know this is not always the case, but from my reading, children with ADHD who have high intelligence seem more able to develop coping strategies).

Autism was a shock. I still feel sometimes that it isn’t right … and then my son has a complete meltdown, screaming on the living room floor, and I know this isn’t typical 11-year-old behaviour by a long stretch.

I’m aware that I’m grieving. Tears. Denial. Anger. Depression. Yup.

I feel a little guilty saying it. I know there are children with autism who are non-verbal, who will always need full-time care, and whose successes will be things we all take for granted. I know that Son#1 has high intelligence, and is likely to be able to go to university and get a decent job. For someone with autism, he has every advantage. His prognosis is as good as it could be, in one sense.

But then I look at my family. I look at everything we’ve lost over the last 11 years. I think of the rows, the frustration, the things we’ve not been able to do because of Son#1. I know that this is going to continue now. Things are not going to get better.

I’m sad. I’m sad for me. This is not what I wanted, when I imagined motherhood. I didn’t want a child who woke me through the night until he was seven, and who still, at times, wakes me for unreasonable reasons, so that I’m often tired and irritable. I didn’t want a child who is obsessed with screens, and Sonic the Hedgehog, and who is unwilling to try new things, even things he knows he would enjoy. I didn’t want a child who has to be persuaded every night that, yes, he must do his teeth; and yes, he must wash.

I’m sad for my other children. I didn’t want family trips out to be made miserable by one child who complains the whole time because they didn’t want to come, even though if we’d stayed at home he would have been bored and miserable. I didn’t want some family trips to just not happen because the thought of going to a theme park and queuing and managing Son#1’s impatience and disappointment, as well as two other children, just felt like too much. I didn’t want family games to always be an exercise in behaviour management, and to often end in pieces being thrown across the room, and doors being slammed, because Son#1 didn’t win.

I didn’t want my desires and longings for motherhood to be slowly eroded until I feel I don’t want to do this any more.

I didn’t want to write this blog.

But you know, all this week, I’ve felt this permission in my heart, from my Father, to grieve. It’s almost like he’s sitting with me, saying, “I know. It’s ok. This isn’t how it’s meant to be.”

Because he of all people knows that this world isn’t the way it was meant to be. He sent his own Son, after all, to bear all our griefs. He has had his own heart broken too.

The book of Psalms has many songs of lament. I’ve read them often. They give words to pray when words are hard to find. Most lead us to a positive end, affirming God’s good power, and our hope that good will prevail in the end.

One ends with the sombre words, “Darkness is my closest friend”.

I’ve often returned to Psalm 88 and wondered why it ends in darkness.

I think it gives us permission to grieve when we know things are not going to get better. Son#1 is not going to get better. This will afflict him and us for the rest of his life. It may well be that I, as his mother, suffer more than him, watching him live a different life. I hope that’s the case. But he may suffer much too. He may want to get married but be unable to find someone to accept him. He may want close friends, but be unable to connect to people meaningfully. He may have close friends and lose them, because of his social ineptitude.

This is my Psalm 88. I will blog another time about hope, about God’s goodness, about the rainbows he is painting through this storm.

But right now I am sad. Right now I am angry. Right now I need to cry.

And if you are dealing with hard, hard things, know that it is ok for you to cry too. God is listening.

Not alone

My oldest son was diagnosed with autism on Tuesday.

I don’t quite know what to do with the diagnosis yet. It sits in my chest like a stone, hard, heavy, painful.

He’s been under the neuro-developmental team for 18 months, and we’ve known for at least three years that there was something going on. We’d kind of wrapped our heads around it being ADD, and felt he had some autistic traits, but because he’s doing so well academically, I suppose we had ruled out a diagnosis of autism.

And I’ve realised that I’m the kind of person that holds onto hope, however unlikely it seems. I want to believe the best, I want things to work out, sometimes to the point where I won’t accept the obvious fact that something isn’t working out.

I mean, when your 11 year old is rolling round on the living room floor, crying and screaming because you’ve told him he can’t have any more X-box, you’d think it would be obvious that something was not quite right.

Still, it’s hard to accept. He’s my son. I want the best for him. I want a happy, simple life for him, with a good job, marriage, kids.

Suddenly all those things are looking less likely, perhaps even less possible.

So I’ve come back to this blog (after a looong break) to try to process it all. I suppose I’m aware that lots of other mums are going through the same thing, and will go through it in the future. By putting my journey of acceptance out there, then perhaps I’ll help someone else.

After the meeting with the consultant, after driving my son home and picking my other kids up, and cooking tea … my first big concern was how autism would affect my son’s acceptance of Jesus and the gospel.

We’ve already encountered some problems. I mean, he has a really hard time accepting that he might be wrong, so wrapping his head around personal sinfulness might be hard. He seems to struggle to engage with the church service (we go to a more charismatic-leaning church at the moment, so emotions are high on the agenda) … he doesn’t like to sing, and just wants to draw Sonic the Hedgehog through the sermon. He also checks out during our family worship times, or cracks silly jokes and distracts his brother and sister.

Can he even become a Christian, I feared. The obstacles just seem too high for him.

Almost immediately I felt the reassurance of God. Nothing is too hard for Jesus. He has defeated death, sin, hell, Satan. Autism is no obstacle to him.

Jesus can save my son. It’s a spiritual work, not mental or emotional (though of course the Holy Spirit will transform those things as he works). And maybe my son will always struggle with aspects of church and spirituality. But Jesus has a special place in his heart for the broken, the weak.

So my first fear was laid to rest.

 

My heart for you, if you are a fellow mother, struggling to accept your child’s future, is for you to press closer to Jesus. He is so strong, so good, so kind. I know it might not feel that way right now. But he is. He will sit with you while you weep; he’ll weep with you in fact. He knows this world is not the way it should be. You are not alone.

 

What I mean when I say, “I’m tired”

Today I took my two younger children out to a farm park. When I got back I spent an hour painting furniture. Then I cooked our dinner.

Just an ordinary day in the life of a mum, right?

Yup. Except that by dinner-time my arms and legs were trembling with tiredness, and it was all I could do to eat. By the time I’d put my daughter to bed, I was so tired even breathing felt like an effort.

Because although, in one sense, I am an ordinary mum, in another, profound sense I am not. I am a mum with a chronic health condition.

My Crohn’s disease is in remission. I am so thankful for that. But while that means I am very happily living without daily diarrhoea and sickness, it doesn’t mean I get to live without some of the other symptoms … tiredness and bowel pain being two of them.

It’s the tiredness I want to focus on, because it is the one symptom that is so hard to explain. When people say, “I’m tired,” it can mean so many different things. Having a newborn baby introduces a whole new level of meaning to the phrase! Having two toddlers at home is yet another dimension! I’ve experienced the desperation and horror of both 🙂

But living with a chronic condition … this is a tiredness so profound that it can feel hard to breathe.

For me, right now, the worst thing about it is the lack of understanding from other people. My husband is wonderful, believes me when I say that I am too tired to pick up the toys on the living room floor, too tired to read, too tired to clean.

Not everyone is so kind.

I know what ordinary tiredness feels like, and how, most of the time, it can be pushed through. Or how, if you just sit down for ten minutes, it passes. But this is not like that. It feels as though the bones in my arms and legs have turned to lead. Moving them is hard work. It feels as though my rib-cage is weighted, as though when I breathe in I am having to lift bricks resting on my chest.

It gets me down. Very down. Because I don’t like my house being a mess. I don’t like not cleaning the kitchen sink for two weeks because by the time I’ve done the basic essentials like emptying the dishwasher and cooking dinner, I’m out of energy. I don’t like telling my kids I’m too tired to play with them. I don’t like choosing a freezer-to-oven meal yet again because the healthy, home-cooked option is too hard. I don’t like saying to friends that going out in the evening is too much at the moment.

It makes me sad and angry that just taking my kids out for a couple of hours leaves me wiped out. I hate what this condition has stolen from me.

I get upset that my weight has crept up and up over the past two years because when I’m down I eat, and I have no spare energy for proper exercise. I joined a weight-loss programme last year, but decided that the stress and extra work of preparing meals from scratch was making me tired and irritable, and though I loved the impact on my body, I decided that, right now, being there for my kids is more important than how I feel about my body (and fitting in with a cultural stereotype of what is beautiful).

This is not meant to be a complaint. I’m writing this so that, if you too are living with a chronic condition, you have something to show those who do not understand you. Sometimes it helps to read something by a third party.

So if a loved one or friend of yours has just shared this with you, read more into their ‘I’m tired’ than how you feel after a long day’s work. Instead, remember the last time you were properly ill, and the first few days of recovery (when you’re well enough to be out of bed, but doing ordinary things leaves you wanting to crawl back into bed). That’s the level I (and your loved one) live at most days. We can manage ordinary things, so it looks like we’re ok. I can hoover my house, clean my bathroom … but then I have to stop and rest, or I’d have nothing left for my kids when they come home.

I’m constantly having to choose, to make sacrifices, to conserve my small allowance of energy, making it stretch. I make choices most people don’t have to weigh up: Do I sort out the pile of laundry or take my toddler to the park today? Do I go to the supermarket or arrange to meet another mum and toddler? I want to do both, but I know it will be too much.

Sometimes I choose something knowing I will suffer for it (like today), because I’m sick of this tiredness ruling my life. But I can only do that so often.

And what makes it 100 times worse is when people don’t understand, don’t even try to understand. It leaves me drained and upset when people judge me as a failure, assume I’m lazy, weak, ill-disciplined … and I have no opportunity to correct them. When people ask how you are, you can hardly launch into a long explanation of how you feel, so “I’m quite tired at the moment”, has to suffice. It barely scratches the surface.p1000669

But it humbles me, which is a good thing, and I am learning to rest in the fact that God knows I am doing everything in my power to please him. I am learning to be happy that he understands, he knows. But every now and then, someone else’s complete lack of understand really, really hurts.

So if you know someone with a chronic condition, be kind. Remember times you have felt like even ordinary life was too much, and how frustrating it was for you, just for two or three days. Let the person have a little moan every now and then, maybe even cry on your shoulder. Leave out the judgement on their house, appearance and life choices. Perhaps they hate having crumbs on the floor as much as you do, but don’t have the choice of whether to leave them another day or not. Have a bit of compassion for them. Because now you know what they mean when they say, “I’m tired”.

Running Joy

I must start with a disclaimer. I don’t run. I am bad at it. I imagine I look like a string puppet from behind. Apparently my feet don’t pace evenly but randomly, like a penguin. Or so my loving husband tells me.

However, in my days of yore I took part in cross country races. (I always came last. Long-legged boys from older classes would leap past me, gazelle-like, splattering me with mud as I picked my way around the bogs, trying to avoid wet feet.) Follow the path at your feet

I like the idea of running; but I’m just not good at it. And I’m ok with that. I enjoy other sports instead like badminton and the school run.

So why am I writing about running?

I know this blog is about joy but bear with me for a few paragraphs. I’m kind of in a boggy place right now, in terms of joy and spiritual life. I suppose it reminded me of those old cross country runs, slogging along wet gravel paths, trying to find the least slippery way through the mud, that feeling of not enough air, of pushing your legs to take one more step. One more step. One more step.

I haven’t slept through the night for nine months now. BabyGirl sleeps. But I lie awake, trying not to think about irony, or how I’m going to survive the next day, and how much damage I’m doing to my children my being grumpy and exhausted all the time.

It’s a slog. Reading the Bible is painful. Praying just ends up in a vague mess of tears and pleas for help which so often seem to go unanswered.

And it struck me that when the Apostle Paul described life as a race, he meant a marathon, not a sprint. There are times when your frozen legs feel like lead, the wind is in your face, hail is stinging your cheeks and other runners are passing you. It feels like you’re not going to make it. You’re wondering why you entered this race in the first place.

I’m tired. I’m irritable. I’m angry with myself for letting my short temper and impatience get the better of me again and again. I’m frustrated that I cannot hold onto God more firmly, or make more room for the Holy Spirit to work in me, or let the life of Jesus into my home through me.

Where is my joy? I’ll be honest … right now, it’s a damp little flicker that seems to be failing against the dark.

I know I’m not the only one. Which is why I’m being open about it. This blog is about joy, but I always wanted it to be clear that there is joy for the hard days as well as the days when the sun shines and running is all downhill. In fact, there is joy especially for those days.

There is joy in knowing I’m flexing spiritual muscles, even though it hurts. I’m learning to give myself up for my children, to be more humble, more sacrificial, more like my wonderful Jesus. It’s tiny baby steps. But it’s progress.

There is joy in knowing that I’m loved even here, even now. Even when I’ve nagged the husband, and berated the kids, and lost my temper, and told God that he isn’t being fair, stamped my spiritual feet and told him that he’s asking too much. (To which he softly replies, “Too much?” And holds out his wounded hands).

There is joy in kneeling at the cross and reminding myself of the forgiveness that is mine. The grace that is poured on me to start again tomorrow as if today never happened.

And soon the sun will be out, and the path will be dry at my feet, and that finish line will be visible on the horizon.15 View from Garden

I’m still alive …

I’ve been rather quiet lately … the stork paid our home a visit four months ago, and our new BabyGirl has kept me very busy!

12 Pembroke
Motherhood

The arrival of a baby into a family is an occasion of both overwhelming joy and stress at the same time. My emotions have run into peaks of love and delight and valleys of despair and anxiety these past months. I have understood the meaning of God as my rock as I have so desperately needed a constant, a level surface under my feet. Emotions are like breakers, threatening to sweep me away.

In times of stress it is so easy to cling to the old lie – “things will be better when …”

I place my hope in a change in circumstances, looking forward to easier days. But this is a false hope. Easier circumstances would relieve some pressure, but our calling in this life is not to seek ease or mere happiness. We are on a quest for joy, and the Bible assures us that joy is found in service and sacrifice, and in knowing Jesus better, not in comfort or ease.

Whoever wants to become great among you must be your servant, and whoever wants to be first must be slave of all. For even the Son of Man did not come to be served, but to serve. Mark 10:43-45

Prayer has been particularly hard as hormones and sleep deprivation turn my brain to cotton wool. I have found great peace in simply offering my day to the Lord at its start, determining to serve him, my husband and children, trusting him to provide the strength.

My default is to panic when I have a poor night’s sleep. My automatic thought is, “I won’t cope tomorrow”. And of course it is harder to cope with two rowdy, challenging boys and a new baby with less sleep. However, the discipline of pausing that thought and reminding myself that my loving Father has provided me with the right amount of sleep, and that he will provide me with the grace to cope, has brought great peace and blessing.

It is a discipline, though, and many days I fail.

What are you struggling with at the moment? Are you waiting for comfort and ease? May I encourage you instead to look to Jesus for your strength and joy, and to determine to trust him to provide for you what you need for today, to do the work he has given you to do.

Motherhood … a privilege?

There is a trend at the moment to be really ‘honest’ as a parent. What this means is, we talk about how hard and horrible it is to be a parent and how annoying children can be, and call it being candid or brave.

There is a tendancy to view children as an interruption, their demanding baby stage as something ‘to be got through’, and we make every effort to minimise the disruption children bring to adult life by using nurseries, nannies, and doing everything we can to get our babies to sleep so that we can go back to ‘normal life’ as quickly as possible.

'Helping'
‘Helping’

While I find it helpful sometimes to talk with other parents and realise that I am not the only one who struggles with my temper, whose kids won’t put their shoes on when asked and interrupt conversations … I feel we are looking at only one side of the coin.

I talked to my mum about this the other day. She had a really good career in the civil service before I came along. She was gradually being promoted up the ranks, and when she fell pregnant actually had the higher wage out of my parents. In modern terms, it made no sense for her to give up work and stay home.

But that’s what she did. She gave up her career, a comfortable wage, and her independence, and stayed at home full time. I asked her if she ever regretted it, or missed working. I expected some wistfulness perhaps, or some words about being glad to give it up because she knew it was the right thing.

“Not at all,” she said. “I loved being at home.”

That’s all very well, a modern mum might argue. If someone loves being at home then great, that’s lovely for her and for her children. But not for me – I need to work, I need more than just caring for children.

But my mum didn’t stop there. She explained why she loved giving up a good career and staying at home full time with disobedient, frustrating kids (and believe me, I could be frustrating – I refused to go to sleep alone until I was well over three, and I would not wear wrinkled socks – my shoes had to be taken off and on until there were no wrinkles at all).

“Being a mother is an honour,” she exclaimed with passion. “These children have been entrusted to you. It’s a great blessing to be there to raise them and teach them.”

Wow. I don’t think anyone has ever said that to me in almost seven years of parenting. People have said how hard it is, how demanding, how it sucks the life out of you and leaves you with stretch-marks, bags under your eyes, and nothing resembling a life.

No one ever called it an honour. A privilege. A blessing.

My mum did a great deal that day to restore my sense of mission in motherhood. Before I had kids I wanted to be a good parent. I saw children as a blessing. But somehow over the years, the lack of sleep and our children’s resistance to love and discipline, not to mention the negative comments in the media and from other people, all ground me down until I wearily resigned myself to another fifteen years or so of not doing the things I loved, and perhaps working at a low-grade job for a few hours a week so that we could afford to pay for a holiday abroad, or university fees.

Amazing what a few words can do. I fully acknowledge that motherhood can feel like drudgery. It is hard work. It demands more than I feel I can give most days.

But I remind myself that I am honoured to bring new life into this world. I feel that more than ever right now as my little girl moves within me. Yes, pregnancy comes with pain and nausea and discomfort but also incredible blessing. I get to give life to someone. To three Someones, with souls and personality and potential to bring great joy into this world.

I remind myself that I am privileged to be one of the most significant people in the life of three human beings. It is my words that will guide my children to success or failure, to good character or weakness. It is my hands that will teach them kindness and love. It is my arms that will embrace them, my belief that will inspire them, my faith that will encourage them.

I remind myself that children are a blessing. They are a gift, not a right. There are thousands of women who would give anything to be woken tonight by the cries of a newborn, but who will sleep soundly because their womb remains empty, or because their baby never came home.

The needs and demands of my children, their mess, their disorganisation, their interruptions – these are blessings too. They have taught me more love and patience than I would ever have otherwise learned. I am so far from perfect but my children have also taught me about forgiveness. I can scream at them in the morning because they have not put their shoes on despite being asked seven times … yet at three o’ clock my son runs out to hug me as if I was the best person in the whole world.

And to him, for now, I am. To him I am the most beautiful woman, the best cook, the best mummy in the world. I’ll take that award.

46 Bute Park Zach took this

So although I think it is helpful to acknowledge that motherhood is hard (in fact, soul-achingly painful at times) … let’s also remember that we are honoured, privileged, blessed. Yes, immense self-sacrifice is involved, but that is our gift to give. Our love, our advice, our support will make a world of difference to the next generation. Let us rise to the challenge and not be afraid.

Good for all the wrong reasons

Last night we ate TV in front of a film. We don’t often do this as a family, but it was late and I’d had an exhausting day. Bedtime came, the film wasn’t finished, but Daddy turned it off anyway as it was bathtime.

“NOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!”

This is not my four-year-old. This is my oldest son, soon to be seven.

He wants to finish the film (though we’d warned him it wasn’t likely to happen at the start).

He wants more to eat.

He doesn’t want a bath.

His angry protests used to shock me, baffle me, send me running to my parenting books full of anxiety about spectrums and syndromes. I’d dredge google for the one article which would explain how to stop my son from rebelling against every single directive we gave him (from ‘brush your teeth now’ to ‘don’t hit mummy’).

Now my husband and I just exchange weary glances. Whose turn is it to field this new ten minute battle to get our son to comply?

Then son#2 pipes up.

“Ok, Daddy,” he says, as virtuously as a four-year-old covered in ice cream and sprinkles can.

At one level, I hear trumpets and angels singing.

Obedience! Compliance! Eagerness to please! This is what I expected in a small child (with pockets of rebellion). Not one long war since the age of 2.

So why does son#2’s response fill me with unease?

I think it’s because, about thirty seconds later (punctuated with machine-gun fired ‘no’s from son#1) he said, “I’m not shouting, Mummy. I said ‘ok’.”

My son is being good. I should be pleased. I am pleased.

But he is being good for all the wrong reasons.

 * * * * *

We have sneaky, deceitful hearts. Those of us who cling to the notion that there is good in everyone just waiting to be tickled delightfully to life need a reality check.

I know just from looking at myself that my heart is like a giant pit. Light falls into the top and it looks ok. A bit dusty, a bit cluttered, but nothing too nasty. When I dare to delve deeper I find corners as black as pitch, and like tangled necklaces I find, with my love of helping people, other desires, like wanting to look good, a craving for praise and adulation, and just basic selfishness. Our motives are so mixed it can be hard to separate the good from the bad.

It was the Pharisees, who did all the right things, that Jesus opposed far more than the prostitutes and swindlers who came to him for help.

if I give my body to be burned, but have not love, I am nothing

Son#1’s sin is obvious. It is in-your-face, bare-faced rebellion.

Son#2 is outwardly a fairly good child. He is mischievous sometimes but his worst faults, at the moment, are mostly passive – forgetfulness, carelessness, impulsiveness. But self-righteousness?

These are big words. Hard to use on a four-year-old. In truth, his sins are seedlings, in their infancy. If I am able to train him conscientiously, many will not grow to a great height and he may learn to do good instead of evil.

But I want him to do good for the right reasons. I want him to seek to please God, not people, not even me and my husband. I want him to do good for love of goodness itself, not for selfish reasons.

* * * * *

This cultivating of little souls leaves me often overwhelmed, often out of my depth, often clutching for those certainties I thought I had before the reality of life with children swept all my parenting ideals out to sea.

But it also reveals much deeper truth and joy than I ever imagined. It reveals my own soul to me. I am both my children in my relationship to my Father.

I rebel. I scream ‘no!’ in the heavenly face. I pummel with my puny fists against the everlasting arms and I tantrum when the will of God dares to go against mine.

But I also have days when I manage, somehow, to do something good and then immediately I am tugging on my Father’s sleeve. “See? Look what I did!”

And more often than not it is like the time my children called me out into the garden to see their ‘work’. With beaming faces they showed me a pit of sodden mud, grass and stones which they had created.

They had forgotten that stones are not to be mixed in the flower bed, and that they must not play with the outside tap. They conveniently overlooked the black mud caked on their shoes, streaking their clothes, oozing between their fingers and smeared all over their faces. They honestly expected me to be overflowing with admiration.

We all walk this tightrope between willfulness and self-righteousness.

It is the cross which keeps us balanced. I look at Jesus and find forgiveness for all my rebellion, hope that I might learn submission like his which says ‘not my will but yours’.

I look at Jesus and cannot possibly hold onto pride. However much good I do it will always be mud-smeared and mixed with selfishness compared to his pure, burning love and utter self-sacrifice.

So I try, on my best days, to stop picking at my children’s outward behaviour. I try to take their gaze off themselves, and turn them to him. I try to do the same myself.