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

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.

 

Boredom Bingo

One of the things I’m attempting at the moment is to work out the major stresses in our family, and then to try to implement solutions. I’m finding that often the problems are more to do with my attitudes than anything else … however I did work out that my son repeatedly asking for screen-time was a major stress on me.

I’ve always been a bit leery of screens. They seem to me to be the equivalent of fast-food for the brain. Growing up, we only had two channels and they only showed kids TV for two hours a day. So at most I’d watch an hour of TV a day, and an occasional film. I was quite happy writing, drawing, and playing with toys or friends.

Son#1 however, absolutely loves screens. This seems to be characteristic of ADHD – after all, exciting TV and video games require little effort in terms of concentration, and can provide a lot of the stimulation people with ADHD crave.

So I understand the magnetic attraction my son feels for screens. What I find really hard to cope with is his apparent inability to entertain himself without a screen.

During the school holidays and weekends he follows me around asking for more X-box, TV, or games on the kindle. He disputes the rules we had clearly established about screen time during the holidays. He is relentless in this, and as an introvert I find his constant demands for attention and screens exhausting. So we have come up with Boredom Bingo!

112 Jonathan's castle

I wrote out a long list of activities that are alternatives to screens. I was careful to involve activities that require Son#1 to think of someone else’s needs and preferences, not just his own – so one is ‘plan a day out for your little sister’, and another is ‘make a card for someone who needs cheering up’. I also wanted him to have some activities that were chores, like putting away toys.

20161001_102638The idea is that any time he feels bored, or when it is not screen time, instead of asking me for screens he can pick an activity off the boredom bingo sheet. When he completes the sheet he gets a small prize (like a bar of chocolate – nothing too expensive!) I’ve put sixteen activities on one sheet, so it should take him at least a week to complete it. He gets the immediate reward of ticking off the activity (or you could offer stickers to a younger child); and the incentive of the reward at the end of the sheet. He also gets the reward of feeling that he has achieved something.

And hopefully, I’ll get a break from the arguments over screen time!

Here’s the link to the pdf if you want to steal the idea for your own family 🙂

boredom bingo

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?

Stopping the Snowball

I love to serve others. I love taking meals around to a friend who’s just had a baby or is ill. I love tidying the house thinking how happy it will make my husband when he gets home (not in a 1950s way, but in a, “I know my husband loves a tidy house so although it doesn’t bother me, I’ll clear as much as I can for his sake”). I love being involved in church activities, whether by holding a house group in our lounge, or teaching in Sunday School, or giving a lift to church on Sunday.

These things bring me joy, especially as I know I am fulfilling the Lord Jesus’ command to love him and others.

But yesterday I hit a wall. It’s been looming for weeks, months even. I’ve been struggling to maintain the level of service that I’m used to. I’m tired all the time, depressed, can’t sleep, cry easily, get angered easily, and yesterday I phoned my mum in desperation because I knew I could not have the kids at home all day. My arms and legs were aching and wobbly, as if I had flu, but I’m not ill. My head ached. I couldn’t talk, couldn’t listen, and got furious when my daughter wouldn’t put her shoes on.

I’ve reached burnout.

I’ve done it before, perhaps not to this extent. Being highly sensitive means I’m generally overloaded just by an ordinary day, but Son#1 has been so awful recently and my daughter has reached the age of 3 (which has always been far harder than 2 in my opinion); my husband has had multiple health issues for two years, and at one point was rendered helpless by a back injury – leaving me to pick up all the child care and housework for a good 2-3 months.

On top of all this we were trying to serve our church, my husband as a deacon and music leader, myself running the creche and just trying to serve individuals who needed help, while hosting a home group, a seekers Bible study for women, and also trying to find help for Son#1.

I’ve been telling people for months that I’m struggling. I found a counsellor, tried to find someone in church who would pray with me or us regularly (failed).

I’ve been trying to give up different things, looking for someone else to take the creche off my hands, but in the end found there was nothing really that could be surrendered.

I’ve been telling myself what I’ve heard from others that actually we struggle when we are depending on ourselves, not Jesus, but when I tried to pray I would just end up sobbing and pleading for help, and telling Jesus all the things that were too hard to carry. Hardly constructive communication.

I felt like I was trying to stop a gigantic snowball that was racing down a hill, gathering up more and more Things To Do as it went.

We’ve agreed, husband and I, to take November off (as far as possible). We’ve arranged it so we’re not on any rotas for two full weeks, and we’re going to worship at other churches for those weeks, so that we can just be together in God’s presence as a family, as a couple. (Normally I’m strongly against ‘church hopping’, but desperate times call for desperate measures).

We’re also intending to take a couple of days together, one to go Christmas shopping – we did it last year and had a really good day together. The other day we want to spend a lot of time praying, stripping ourselves back and rededicating ourselves to Jesus.

Because here’s what I’ve realised. That snowball didn’t start rolling by accident. I packed it heavy at the top of the slope, picking up service here and rotas there. And trying to pry them off again was difficult.

Partly because our church is small, and there are not many local people to serve.

But mostly because I love people to see me serving. I want people in my church to admire me. I want people to hold me up as an example of a Christian woman. I want people to see my heart for God, and know that I love Jesus deeply.

Ugh. I’m very sick of myself right now. Very tired of my sinful heart that hides and sneaks and betrays me, even when I think I’m being ‘good’.

So I’m hoping this month to strip back my pride, my desires for admiration, my desire to be noticed. I want to get back to that pure heart, the one desire, the one thing that matters. I want to put down my serving tray, and with it my heavy, burdensome desire to be noticed, and I’m going to accept the humble service that nobody sees.

I’m going to remember that the only person who matters sees everything, and is made glad. He noticed the widow giving everything she had, when everyone else thought she was being cheap. He noticed Mary sitting at his feet, when Martha thought she was being lazy. He notices me, he knows my physical limitations and my desire to please him. He also knows my desire to please others, but he came to remove burdens and he loves me anyway.

He loves you too. He sees you too. Let it be enough.

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.