Crohn’s and Coronavirus

The outbreak of coronavirus has coincided with our own little crisis, so that at first, I didn’t really appreciate the severity of the global situation.

My Crohn’s disease, which has behaved itself very well for at least six years now, has suddenly flared up. I caught a flu-like illness at Christmas time, and my poor stomach hasn’t been the same since. I got to the stage where I was exhausted and visiting the toilet several times a day … anyway, it wasn’t pretty. Thankfully it was just as the first coronavirus headlines were reaching the UK, so I was able to quickly access medical care.

The catch is that I’ve been put on steroids. These dampen my immune system and while that’s great for my Crohn’s (which is beginning to behave itself again) it’s not great when a global pandemic is occurring!

It has been really hard to know what to do. What I’ve been very aware of is that it was a flu-virus that triggered my current symptoms. I don’t want to give my immune system any more excuses to misbehave, especially with a brand new virus. I also don’t want to become one of those people overloading the NHS, by developing complications.

So we’ve applied social distancing measures to our family. We made the decision to keep the children off school yesterday. It seems foolish for me to be avoiding supermarkets, but letting the children go into a crowded, closed-in space for six hours a day, and risk bringing germs home. At first I thought we were overreacting, but a doctor friend has reassured me that we are being wise.

I’m very conscious that I was facing some deep questions just as coronavirus began making its way around the globe.

What if the treatment doesn’t work this time? What if my Crohn’s gets worse, and I have to live with debilitating pain and illness long-term? What if the treatment really doesn’t work? Will my life be cut short? Will I have to leave my family and my children?

I don’t want to sound dramatic, but these questions are very likely to be running through the mind of anyone facing a serious, chronic condition. I’m also aware that these may be the questions running through your mind right now, as you watch the spread of coronavirus, and the attempts of governments to slow and stem the tide of disease.

I think coronavirus is exposing us to things we prefer to suppress. Things I’ve had to face up to often through my life.

Medicine does not hold all the answers. When I was diagnosed with Crohn’s, I was surprised to discover that the doctors did not know what causes this disease (and many others). They know what the disease does, and can offer some very welcome treatments to heal our bodies, but cannot explain why a body’s immune system would turn upon itself.

And even the treatments themselves hold no guarantees. I may take the same steroids and medications as another woman my age, and she may respond and recover; I may not. Again, the doctors don’t have an explanation. Different people respond differently to different treatments, and it’s impossible to predict outcomes with certainty.

What this is all whispering to us is that our lives are not certain. We have far less control than we like to think. This is a truth we are able, most of the time, to keep at bay here in the west.

I know this because it’s how I lived before I got Crohn’s disease. I assumed that ill health and death were far off. I assumed that if I did get ill, there would be a scan, a pill, a treatment. And in the moments when such assumptions were shaken, I could silence the whisper of fear through social-media and home entertainment.

Teach us to number our days, that we may gain a heart of wisdom.

Psalm 90:12

I know it’s really scary, facing the unknown. It can feel like standing on the tip of a void. As I’ve reckoned with the possibility of my life holding illness, surgery, pain, cancer, and possibly an early death, I’ve sometimes been gripped with terror. What will happen to my children if my life is cut short? What will happen to me?

I’ve begun to realise, very vividly, that none of the things we trust in are strong enough in such a storm. Medicine can do much, but it cannot save your life indefinitely. The outlook is bleak – the mortality rate on this planet is fixed at 100%. You may get to live to eighty, ninety, but then you will die. And as Moses so eloquently states, even those years are weary, and full of trouble (Psalm 90:10).

My gentle challenge to you, during this fearful time, is to let yourself face those fears. Ask yourself those hard questions. Stand on the edge of the void, face the unknown.

What is your baseline trust? When all the things we usually trust in – social order, government, medicine – are being shaken, where is your hope? When a vague platitude of, “I’m sure it will all work out” no longer holds water, where do you turn?

It’s only as we face our fears that we really discover what we are hoping in, and where our trust is. Mine was in my health and youth, once. I quickly realised that a disease can easily take away all of that. Then for a while my trust was in medicine, but I learned that there are no guarantees, even for our amazing doctors.

It was painful, having my hopes, my expectations, taken away. My foundation was shaken. Yet as I discovered how weak medicine is, I found something stronger, something that is big enough to carry me through illness, pain, suffering, and yes, even death.

Or rather, Someone.

My hope used to be in treatment, in cure, in long life. Not any more. If God gives me those things, then I will thank him with all my heart, but he may not. That’s his call. And yes, I tremble as I write that. I don’t want to die. I don’t want to leave my family. I’m scared of coronavirus, just as I’m scared of the uncertainty of Crohn’s disease.

But here is what I’m hoping in.

God is bigger than Crohn’s, or coronavirus, or any other disease. He is more precious than youth, health, long life. His love is deeper, stronger, than any I could ever have known. It’s the kind of love we all long for.

As we look at our world now, pause and notice the fragility of our society. We appear so strong, with our health care, justice system and advanced technology. But coronavirus is revealing it all to be built on sand. A tiny particle, invisible to the human eye, is destroying our society.

But this is my hope … one day God has promised to renew this world. He has promised to sweep away corruption, disease, and even death. In fact, he has already removed the sting of death for those who love him. When I do die, whether of coronavirus, Crohn’s, or peacefully in my sleep as a ninety year old, I believe I will be truly coming alive. I will wake to peace, healing, and life.

While coronavirus is fearful, and evidence of the evil that underlies our world, it can also be an opportunity. It’s a chance for us all to pause, to sit in silence, just for a few minutes each day, and ask what we are truly trusting in. Youth and health may fail you. Medicine will fail you, if not now, then one day.

God will not. He can keep you safe in this life, and if he chooses for you to leave, he can give you an eternal life, un-threatened by disease, sorrow or death. Look for him.

You will find him if you seek him with all your heart.

Deuteronomy 4:29

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?

Diagnosis Story

Most of us resist labels. In an individualistic society we dislike being boxed in, classified with groups of other humans as if our stories are just the same as everyone else’s. Labels can restrict, altering others’ perceptions of us.

ADHD means ‘hyperactive’, ‘troublesome’, ‘difficult’.

Autism means ‘odd’, ‘low intelligence’, and ‘socially awkward’.

I think of the labels I live with. ‘Stay-at-home-mum’ for some means ‘lazy’. ‘Depression’ can mean ‘weak’, ’emotional’, and again, ‘lazy’.

Labels are freighted with associations, and this is why we fear them, because not all of those associations apply to the individual who wears the label.

Yet labels can also bring freedom. Freedom to be ourselves. Rather than always having to hide the things we struggle with, labels allow us some grace. Someone can explain that ADHD sometimes means they blurt out an inappropriate response. “I’m working on it, I don’t mean it personally. Please let me be me, and don’t reject me.”

I feared labelling my son. I did not want people to treat him differently, either by excusing behaviour or assuming negative things about him before getting to know him. But slowly we began to realise that the issues we hoped he would grow out of were not going away, in fact they were getting bigger, and having more of an impact on his life as he got older.

They were also having a greater impact on our family life. His anger is an onslaught, and rises with very little provocation. Far less unpleasant, but just as draining, is his inability to not interrupt, or to wait when he wants something.

Also troubling is the difficulties he has relating to his peers. He shows a noticeable lag in emotional development, and went through a stage of being called ‘annoying’ by all his friends. That seems to have passed, but he still struggles to get involved in games where his rules and ideas are not listened to. He wants control, and gets upset when friends won’t listen.

With high school approaching in September, we realised that he would need help. Homework demands will increase, and at the moment he has meltdowns over a single sheet of maths.

It is intensely frustrating to me that because he shows no educational lag, no one would take us seriously for a long time. If anything he has high intelligence, and is ahead of many of his peers in the classroom. For this reason, the professionals are ruling out ADHD at this moment. I’m not claiming to know more than they do about neurodevelopmental science. But I am an expert on my son. I have observed him, and lived with him, for ten years. I love him deeply. And the autism spectrum disorder which they are leaning towards just doesn’t fit, from my perspective.

Admittedly, he has some traits that flag up concerns – but these all remain in the social development side, and can be exhibited by people with ADHD also.

I’m finding it difficult to convey in brief appointments the feelings and instincts I have. It seems to me that the USA are much further ahead of the UK in terms of research and understanding of these issues, and have broken down ADHD into more streams. Here in the UK we recognise only three. One Dr in the US identifies seven types of ADHD.

Right now I know we have to go through the process. I have to pray, and trust, and wait for the professionals to check every avenue, even if they only rule things out in the end.

But it is my son, and I love him deeply, and I am afraid of them getting it wrong. I am anxious for him. I am anxious for myself, because of the freight of these labels. Autism (even mild) feels terrifying. What will it mean for his future? Will he be employable with that label? Even if it is only mild, and he manages to get to university and gain a first in science? Will it frighten people?

Even ADHD … what will it mean for his long-term relationships? Will anyone want to commit their lives to someone so difficult? So challenging? How will he be with his children? Will he be intensely involved one minute, then distant and engrossed in his work the next?

I know that worrying about the future is unhelpful. Each day has enough trouble in it. I tell my soul to listen to Jesus on this one. The future is in his hands.

But the questions drift like ghosts in the back of my mind. I don’t fully trust the professionals. I feel that the forms we fill in give only a partial picture. And how can a family’s life be condensed into an hour-long appointment?

The educational psychologist will evaluate him in school next week. And right now all I can do is gather information, evidence for what I believe, in the hope that someone will listen.

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.

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.