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 J 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 J. 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 J’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 J 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. J 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.

 

Thoughts from the pit

I had such a strong vision of how our family was going to be. Thirteen years ago when I said, “I do”, I thought we would have a tribe of happy children, gathered peacefully around the table. With Christmas coming, my vision turns to games played around the fire, stories shared with food, children listening as we whisper the reason for the lights and presents, the joy that we have a Saviour.

I know now that this was an ideal, even in ordinary families. The peace is disrupted by sin, selfishness, illness, and tiredness. Those moments of peace and joy, when they come, are precious.

I think the past ten years have been God slowly prying my fingers loose from my vision. I cling on tightly, because this is what we have been taught to want. Peace, happiness, gently glowing fairy lights and thankful faces.

I think God has a different vision. And now that we have accepted that our oldest son actually has some pretty deep issues, I’ve been working through a process of mourning my vision, and learning to accept and live in what God, in his wisdom, has given instead.

God’s vision is one of self-sacrifice, where we learn to make space for other peoples’ difficulties and differences. It hurts. It means that maybe our family worship times have to be short, snappy, fun, rather than slow, deep and thoughtful. But you know what, that’s where my husband excels. So maybe God’s vision is also one where I learn to let go of control a bit more.

God’s vision is one of forgiveness, where we walk the hard road of saying, “You hurt me, but I’ll accept the pain of that rather than break our relationship”. We are walking with him in this, following the footsteps of Jesus.

God’s vision is one of love, where we show kindness when we are reviled, patience when faced with ingratitude, and persistent generosity when our efforts go unrecognised. We could not learn these things so well if life was always easy, if our children were always obedient and thankful.

If I have learned one thing in this life it is that the harder road is always the better one, though it may hurt. The best things of God are those won through pain, through trial. Just as the best views are found at the top of a rugged mountain path, the greatest love is found through sacrifice.

God knew this. It’s why he allowed sin into the world. It’s why he sent his Son to live here, instead of remaining in perfect peace and joy in heaven. It’s why he allowed us to crucify his deeply loved Son, so that the whole Trinity could enter our brokenness and love to the fullest measure.

God seeks to draw us up into his higher life, his life of sacrificial love, his life of forgiveness and mercy. Will I still fight him? Or will I embrace the opportunities he has given me to experience deeper love, deeper forgiveness, deeper grace?

Public Isolation

I’d forgotten how isolating suffering can be.

It feels like the worst thing, to be walking about with an invisible weight resting on your chest, so heavy you can hardly breathe, and no one notices.

To feel as if you are screaming and sobbing inside, and no one can hear you.

To feel as if the weight of life is just so heavy that you can hardly take another step, and no one wants to help you.

And smiling hurts. It hurts because it feels so fake, so false, to be pretending you are fine, when you feel as though your life is crumbling in your hands.

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So you try. You pick one or two people and stammer out that things have been really difficult for a long time, and now it feels as if no area of your life is really functioning and you don’t know what to do. But because you’re nervous and don’t want to be a burden you laugh and try to make it seem less of a problem than it is, so the real issue isn’t fully expressed.

And because people are busy and overwhelmed themselves they don’t usually take the time to really delve deeper and ask what the problems are, and to imagine what it must feel like. I’ve been there myself, had a conversation with someone, walked away, and only later has it struck me just how difficult their life must be because of some seemingly small thing they shared.

Or sometimes, because people are busy and overwhelmed themselves, a look of cornered panic crosses their face unawares, and you realise that they don’t want another problem to be burdened with, another need to meet, another struggler to carry, they are just keeping their own head above water and that’s enough.

So you feel like no one really understands.

And sometimes, what really, really hurts, is that you get more kindness from someone who doesn’t even know Jesus than those who do, and are supposed to know better.

I’m going to come back and explain why things have been so hard, and why I have’t touched this blog for months now. Right now that task is a bit beyond me … there are so many issues I don’t even know where to begin.

As always I’m looking for something to take away from this experience, even this depression and hurt.

I think sometimes God pulls us aside and takes away every person we are depending on. This feels like unkindness, but it’s not. Because he wants to be everything to us, knowing that only then we will find peace and strength. People will always let us down. They were never designed to carry the full weight of our need, let alone in this broken world where sin so readily destroys. Only God can fill the eternity gaping in our souls, and he longs to do it. So he makes us feel that need by pulling away every false prop.

So if you are feeling alone too, lean into him. Cry the messy kind of sobbing and tell him that you need him. Let him bind up your wounds. You know, sometimes that hurts too. Oil on raw skin stings. But later it soothes and heals.

And then be the person you long to meet in your darkest hour, the one who pulls up a chair and listens, who isn’t afraid to ask the probing questions, the ones that draw out the pain. Yes, even when you are hurting yourself. Offer kindness instead of politeness, love instead of reserve. Sometimes God sends us pain so we learn how to help the many others in this world who are crying out for love, and truly have no one to turn to.

 

I came across that viral picture of Drake, today, the little boy battling cancer in the USA.

My heart skipped a beat.

I wanted to leave the image, return to my cosy comfort-zone. I made myself look back. I made myself honour his bravery and his suffering by reading his story.

Such images, such stories, break through comfortable Christianity. They force me to confront the reality of the world. Such stories rescue us from easy answers to the big questions, the questions that have stumped philosophers through the ages. There can be no neat answer to such an appalling tragedy.

If I’m honest, such an image makes my faith skip a beat.

My belief system is thrown into context. What does a poor carpenter from a forgotten corner of the world have to do with Drake? With the suffering in Yemen? With anyone broken and sad and in pain and having lost everything?

It seems unbelievable suddenly. Does God really care? Is there even a God, if such things are allowed to be?

I think through the alternatives: there is no God. Then there is no question. Suffering is not a problem, it just is. Cancer has no higher meaning. It is just part of this cycle of living and dying that will continue ad infinitum. If you are lucky enough to have avoided bad genes or contagion then enjoy yourself and spare a thought for those whose lives are soaked in suffering. This is all they have.

Other religions … with other gods sometimes suffering is repayment. I must have done something terrible to deserve this. I must redeem myself by doing better. What a terrible burden to bear.

With God … I am not sure God provides an answer to suffering. I suspect because no answer would satisfy. Who is going to listen and then go, “Oh sure, ok; I understand. That’s why my little boy can’t eat and is having to take poison daily. I see now, it’s ok.”

Everything in us resists suffering. We know, deep inside, that this is not meant to be.

I prayed for Drake. I prayed for his mother. I didn’t know what to pray – I have never had to watch my sons suffer so much. It’s unimaginable. I suddenly realised that God knows. He watched his son, his only son, be beaten and bruised. He watched him cry out, “My God, my God, why have you abandoned me?”

 

So as I prayed for Drake’s mother I realised, God can comfort her. He knows. He knows what she is going through, to watch helpless while her son suffers. And Jesus knows what Drake is going through. He knows what it feels to be in pain, to want it to stop, to think you cannot go on, but to keep on breathing anyway.

His arms are open wide, so that if Drake’s medication fails he can step into those welcoming arms and be free from pain and suffering. His arms are wide open, so that if Drake’s medication works, that little boy can run to him for comfort and help on the days when it’s unbearable, and know that one day he can be strong and live for the one who did die.

This is something offered by no other religion, a God, transcendent and holy, yet who knows pain. Who has walked my road, and walks it with me. Who has drunk the cup of suffering to its dregs.

This doesn’t answer the philosophical question, I know that. But it offers something I find nowhere else. Suffering alone is probably the worst thing imaginable. Jesus suffered alone, so that he could stand by me when I suffer.