On grace

Just over three years ago I was filling in application forms for my Blue Badge. It wasn’t the most pleasant of processes and I thought to myself, ‘At least I won’t have to do this again.’ I was pretty unwell and it seemed very unlikely that I would outlive my Blue Badge.
A few weeks ago my Badge was about to expire and so I sat down and filled out the forms for the second time.
And last month I celebrated the 10th anniversary of the day I was told that I’d probably live for another two to five years.

I’ll be honest, there have been several (OK, many) times throughout the last few years where I’ve thought that it would just be easier if I popped off (and it probably would have been). But here I am, 26 years old, with 22% lung function, able to live most of my life without extra oxygen and continually surpassing what I’m ‘meant’ to be able to do.

That, my friends, is called grace. God continues to be faithful and loving (despite how infrequently His plans for my life match up with my own!)
I am grateful indeed.

On ordinary moments

In recent months I’ve read a fair number of blog posts extolling the beauty in ordinary moments. I’ve written a few posts in the last couple of years along those lines myself. But I’ve been finding that, in my own life, ordinary moments often don’t feel special and sometimes I struggle to find loveliness in the mundane goings on of life.
Cystic Fibrosis is not a lovely disease (what disease is?!). My daily physiotherapy is distinctly unlovely as I have to clear out whatever mucus there is in my lungs. My posture exercises are to stop me from becoming even more of a hunchback than I am already. And you should see my purple face after a violent coughing fit! Those are not moments to pin on my Pinterest board. No filter is going to make those into Instagrammable pictures.
Let me make myself clear. I wholeheartedly approve and applaud the attitude behind the ‘ordinary is beautiful’ movement. I’m a card carrying member of that community. There is nothing inherently wrong with blog posts, Instagram accounts and Pinterest boards filled with gorgeous images of simple things and descriptions of ordinary moments. But personally I find that those beautifully arranged vignettes and eloquent word pictures can make me forget something very important: Ordinary is allowed to be just ordinary. Yet in my pursuit to celebrate the ordinary, I sometimes fall into the trap of not actually celebrating the ordinary but celebrating the edited version of ordinary that I’m comfortable with sharing on Facebook.
The beauty in the mundane is very real. I can vouch for that. It’s found in accepting a calling that won’t make you wealthy or famous. It’s found in being genuinely thankful for your day’s food, whether it looks good through a camera lens or not. It’s found in knowing that there is a God who has planned your life such that where you are right now (be it awake in the middle of the night, clearing up after your children yet again, in a hospital room, all alone somewhere etc) is the absolute, number one, best place for you to be. But when I feel inadequate because ‘her’ mundane seems so much more beautiful than mine, I’ve missed the point of it all.
It’s a simple task to love the lovely but maybe your ordinary seems just a bit too, well, ordinary. That’s ok. Put down the camera and stop looking for the short term, little picture beauty. You might have to look at this ordinary moment in a long term, big picture way. You might not see the beauty until you look back from the New Creation. That’s ok. Sometimes we have to learn to let the ordinary be ordinary.

On attitudes

My attitude to Cystic Fibrosis has changed a great deal over the past few years. It’s been influenced by the questions that people have asked me, the way I’ve seen others behave, the assumptions that people make about disabled people and through my deeper understanding of the gospel.

I used to think of CF as an evil, external thing. But I don’t think that’s helpful anymore.
I need to be able to see it as a result of the fall.
But I also need to see it as a gift that was chosen for me before time began and was given to me by the Father who knows how to give good gifts to his children.
I need to see it as one of the main shapers of my life.
I need to see who I might have been without it.
I need to see how it has helped to change David for the better.
I need to see the eternal perspective it has helped us live with.
I need to see the people we’ve been able to meet and chat to because of it.
I need to see the lessons in patience and trust and many, many other things.
I need to see how many times CF has forced us to our knees in prayer.
I need to be able to thank God for CF and mean it.

Of course, CF and its implications often make me and my family very sad. That’s ok. CF is not going to be in the New Creation. It’s a result of sin. But it is a very real part of me and who I am today. And having had it in this world, it will affect who I am in the next.

I think it is so important that I don’t see CF as this thing that my doctors and I are fighting. That image takes away all of the good things. It changes me from a suffering person, helpless and needy before my God, to a person who, empowered by modern medicine and my own strength, can make it through illness.

I pray that I would get better but my job is absolutely not to spend my life fighting to keep my earthly body alive as long as possible. It is to spend my life in a way that shapes and beautifies my eternal soul. Of course, my body is important. David and I do make decisions that mean a longer life and more suffering. It’s against the gospel message just to give up. But the longer I live, the more I am convinced that an aggressive attitude to our illnesses and diseases is not a faithful one. When I am aggressive towards the tool in the hand of the Master Craftsman, then I miss His ultimate vision, I forget the necessity of every blow and I also fail to see the kindness in His eyes.

Living with a disease is not easy. I’ll be the first to admit that. But being able to focus on the life-changing work that God is doing rather than on the body-destroying decay that disease brings is vital.
If I see CF as an enemy, that attitude is not only likely to stifle my thankfulness but also to turn me away from the gospel path of rejoicing in weakness. I want to spend my life learning ever more that strength truly is found in weakness and that, thanks to God and His use of CF, I get stronger every day in the ways that really matter.

On beauty

I find lots of different things hard. But one hard thing that keeps coming back, time and time again, is the hard thing of beauty.
The other day a nurse came into my hospital room, saw our wedding picture which I had on the wall and commented on how different I looked. It was a throwaway comment. But it’s one that I went into the bathroom and cried about. It’s one that I just can’t get out of my mind. Because it’s true. On our wedding day I did look different. CF didn’t affect me in the same ways as it does now. One month after our wedding I picked up MRSA, got a lot more ill and things have changed hugely since then. I’ve been on antibiotics which yellow my teeth, I’ve moved from osteopenia to osteoporosis, when I’m on IVs my hair starts to fall out, my skin gets dry and more translucent, my back hunches over more and more, a reaction to an anti-sickness tablet had far-reaching effects and the list goes on. And then I have the PEG, the port and oxygen tubes which are all external reminders.

I look in the mirror and see Cystic Fibrosis. I see the difference from my peers. I see who I used to be and the changes that make me who I am now. And it hurts so much. So many small things, stripped away. Making me ever weaker and realising all the more my need for a God who sustains and strengthens in different ways.

God is an artist. He sculpts and creates us. But I’ve come to realise that God is an artist who specialises in mosaics. Beautiful things made out of broken pieces. The breaking is hard but slowly, piece by piece, we are refashioned into something more interesting, more faithful and more beautiful.

I certainly feel that way. I’ve been broken many times and in many ways. But as each hard thing, like a rock, breaks down yet another part of me that I thought was good or pretty or useful, I see God picking up the pieces, reshaping them and rebuilding me.

I struggle to learn this lesson. Every now and then I hear a comment or glance in the mirror and all the sad, ugly feelings come rushing back. But this is just another step in the upside-down Gospel journey. What seems like weakness, is built up into strength. What seems like failure, is success far greater than this world can imagine. And what looks like ugliness, is transformed into beauty.

That’s the truth. And even the truth itself is beautiful.

Thanks for asking

‘What is wrong with you?’
A simple question asked by a small, simple child.
I smile to myself at the horror on his mother’s face. With a quick aside to let her know that all is well, I choose my words carefully.
‘Some of the parts of my body don’t work very well. My tummy and my lungs don’t do what they’re meant to do and so I have to take tablets.’
The little boy’s eyes open wider. Perhaps in amazement, perhaps in understanding, perhaps because he enjoys shocking his mother. I guess I’ll never know.
‘And the tablets will make you better?’
I smile again, this time a slightly sadder smile. Oh, to have the faith of a child.
‘They’ll help. They help my body to work properly.’
‘So you’ll be ok then?’
Yes, small child, I’ll be ok. Maybe not in the way you meant. But I’ll be ok.
Thanks for asking.

Life given from the Life Giver

Some days it seems as though Life has been stolen from me. Taken away in different ways. I won’t live long. The average life expectancy for a person with cystic fibrosis is 31. My prediction isn’t even that good. And while that is a hard thing, it still feels like a distant thing. My struggle right now is in the fact that I can’t give life. I can’t live life for long and I can’t give life. Yes, yet again, this comes back to motherhood. Or the absence of it.

I had a dream. I had a little girl. But at 8 hours old she passed away. Even in my dreams life is taken from me. I woke up, knelt on the floor and wept. I cried out to the Life Giver. ‘Why? Your Gospel is about Life. How can I be living something so contrary to your Gospel. It seems so empty. So foolish. So void. You give Life. You give abundantly to others. Why not me? I feel like I’m living Death. I wake up breathless, clinging onto life. I fill my body with chemicals in the morning to help it through the day, and in the evening to help it through the night.’

Yet my life is not my body. My true Life is my soul. I will live forever because that was the plan of the One who made me. He didn’t make my body to last. My body will stop working, perhaps before yours, perhaps after. Who knows? Calmness overwhelms me. The tumult of my soul over something as small as my body seems crazy in the grand scheme of things. What’s made to last, will last. My everlasting parts need not worry over the decay of my passing body. God creates, he breathes Life into beings. And the true Life lives on. God’s plan.

My body matters. It’s ok to weep over hard life, over lost life, over life that will never be. Jesus wept. But looking forward helps me. It helps me to see true Life. The Life that never ends. And I have that. It’s a gift from the Life Giver. And no one can take that from me.

The joining of worlds

It feels like a clash of worlds.

It’s a beautiful day. One that sings the song of Life so loudly. It’s a day where the Creator’s love for us is perfectly clear. 
‘Look,’ He says, ‘See the happy children playing in paddling pools, feel the warmth of the sun on your skin, hear the birds having the time of their lives, smell the heady scent of the flowers in bloom. Here is my Love for you. Here is a piece of Glory for you. Here is Beauty in abundance. Here I Am.’
But inside my body, the consequences of sin make themselves known. I am ill. Even on such a day as this. My Life song stumbles out of my mouth with halting breaths, quietly and slowly. And the Creator’s love feels so far away. He created this body, this frail, weak thing. Why? What was the point? And in the silence, in the confusion and in the questions, the answer comes.
‘Look,’ He says, ‘My power is made perfect in weakness. Here is my Love for you. Here is a piece of Glory for you. Here is Beauty in abundance. Just for you. Here I Am.’
For all the joy of a summer’s day, I can bring a greater smile to my Father’s face. For all my weakness, I have a great task. I am loved. I am made glorious. I am made beautiful. And I will strive to see the Glory in my weakness. As easily as I can see the Glory in the beautiful day. Because it is given to me and asked of me.
It feels like a joining of worlds. The glorious day and the glorious task. Made one through the Creator who calls all things to glorify his Name.

For Claire

I believe in life. I believe in hope. I believe in joy. And yet there are days when believing is hard. When the reality of sin and its consequences hit home in sad ways. Having an illness makes you feel the pinpricks of life often. There isn’t a day when I’m not reminded of illness and sadness, of pain and discomfort. And sometimes, some days I feel those pinpricks harder and bigger than before.

Today I learned of the death of a friend with Cystic Fibrosis. I didn’t know her very well but I knew enough to be amazed at her life, at her hope and at her joy. She fought for over 30 years, she ran the race and crossed the finish line into the arms of the Saviour she loved. She will have a new body one day, a body made perfect, a body with lungs that can breathe long and deep breaths, a body with energy enough to run marathons.

And I weep. Not for Claire. She has found Glory. But for her family and friends. For the fight they will have to believe in life and hope and joy. For my own struggles yet to come. And for my own fight to believe.

But in the sadness, the Life Giver is there. He knows the pinpricks. And he knows the nail wounds. And he tells me that life is eternal, that hope is here and that joy can be found. It’s our job to trust.

The School of Pain

I used to go to a bright school
Where Youth and Frolic taught in turn;
But idle scholar that I was,
I liked to play, I would not learn;
So the Great Teacher did ordain
That I should try the School of Pain.
One of the infant class I am
With little, easy lessons, set
In a great book; the higher class
Have harder ones than I, and yet
I find mine hard, and can’t restrain
My tears while studying thus with Pain.
There are two Teachers in the school,
One has a gentle voice and low,
And smiles upon her scholars, as
She softly passes to and fro.
Her name is Love; tis very plain
She shuns the sharper teacher, Pain.
Or so I sometimes think; and then,
At other times, they meet and kiss,
And look so strangely like, that I
Am puzzled to tell how it is,
Or whence the change which makes it vain
To guess if it be Love or Pain.
They tell me if I study well,
And learn my lessons, I shall be
Moved upward to that higher class
Where dear Love teaches constantly;
And I work hard, in hopes to gain
Reward, and get away from Pain.
Yet Pain is sometimes kind, and helps
Me on when I am very dull;
I thank him often in my heart;
But Love is far more beautiful;
Under her tender, gentle reign
I must learn faster than of Pain.
So I will do my very best,
Nor chide the clock, nor call it slow
That when the Teacher calls me up
To see if I am fit to go,
I may to Love’s high class attain,
And bid a sweet good-bye to Pain.
~ Susan Coolidge
When I was little, I used to love the What Katy Did books where the above poem can be found. As with so many things, I’ve wanted to adapt it slightly so that it becomes more grace filled than reward based but there’s still a whole host of things that have been helpful to me and that I’m grateful for.
I love metaphors. I love pictures. I love different ways of understanding reality. And I love the idea of a School of Pain and Love. Because life is about learning. And I just can’t stop learning, even if I wanted to. The Great Teacher is everywhere. His lessons are all around. I can learn in the quietness and stillness of a sleepless night. I can learn in the hustle and bustle of a tube train. I can learn in the laughter and joy on my nephew’s face. And I can even learn in Hospital Room 16.
And that’s where I’ve been. On my own little intensive course. The Teacher sent me off. Away from the comfort of my home and my husband and into a new environment with new and harder lessons. I know I haven’t learned the lessons that He has for me. But I’ve made a start. My handwriting’s still messy. I still can’t walk in a straight line. And you should see the way I mispronounce words. But over the course of 16 days in Room 16, I’ve begun learning lessons that last.
I’ve learned that a hospital room doesn’t have to be a place of spiritual barrenness. I’ve struggled with that in the past. They are some of the places that I’ve felt most alone. But it isn’t good for people to be alone. And so God showed himself to me in Room 16 and I knew I was truly loved. I’m not a very emotional person, the emotional capacity of a teaspoon is the way my family often describe it. But I cried more than once because I knew that my Father was with me right there in Room 16. 
I’ve learned to give thanks for small blessings. They’re always there, these small blessings. Even if they come in the form of having an IV line in my left arm instead of my right. Or being able to bless people in little ways – nurses like to be smiled at, cleaners like to be chatted to, catering staff like to be thanked.
I’ve learned the power of prayer. I had an inbox full of emails from people saying that they were praying. Some of the things we were praying for got answered with a no. But the power of prayer isn’t just about getting a yes. It’s about being able to ask in the first place. It’s about the joining of hearts and minds asking that God’s will be done. It’s about the encouragement that knowing people are praying can bring. And it’s about the privilege of talking to the King.
I’ve learned to say thank you. My thank you prayers are often hollow. But I thanked God for the suffering and meant it. I’m learning the joy that comes with saying, ‘Your will be done.’ Joy can be found in the strangest and hardest of places. But it’s worth it. 
I’m not perfect. Far from it. So far from it that God sent me to Room 16. I’m grumpy. I’m ungrateful. My refrain is often, ‘It’s not fair.’ I’m short-sighted. Don’t be fooled into thinking anything else. God is love. And I’m the loved. Wonderful, crazy love.
I need to keep learning these lessons. I know I have many intensive courses in my future. It may not be Room 16 but it’ll be somewhere. And right here, right now that scares me. But the lessons I began to learn in Room 16 are true. They are hard. They are big. But they are the lessons that my God has for me. And I’m here, with tears in my eyes and a smile on my face, learning them.

It gets harder…

It’s always a sign that things aren’t going well when the baby steps you take get even harder. Foetus steps isn’t a phrase and there’s a good reason for that! Marathons get harder and feel longer when you slow up.

Things took a turn for the worse in our house recently. It was pretty grim. It ended with a GP’s visit, a hospital appointment and a hospital bed. We found out a couple of days ago that if we hadn’t gone through the GP and had a hospital appointment, I would have been put onto a 5 week long waiting list. God never ceases to amaze.

And yet it makes me so ashamed that when God was sorting out my not having to wait for 5 weeks, I was complaining. ‘God, why am I so ill? What is this? Can’t we just have a year of marriage when things go smoothly? Ok, 3 months? Even better, just take CF away, Lord. I don’t want it. It’s not fair, surely you can see that.’ I’m called to trust in the small things and so often I’m blind and so often I’m ungrateful.

This little bout of illness has done two things, taken me into two phases.
The first is the realisation that life will never again be easy. I used to think it was. But I’m older now, a tiny bit wiser. And I know. I know when things aren’t going well. I know when life gets harder.
The second is the realisation that life will never be as wonderful as what’s coming. I watch people having babies and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun playing with the baby. I watch people playing sports and having fun and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun being a cheerleader. I watch people advancing in careers and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun listening to people’s stories and encouraging them.

There’s a reason we’re told that God does all things for our good. It’s because it’s true. And in tiny ways I’m being allowed to see this truth. Come and look through the cracks in life with me. Light seems brightest when it’s shining through a small crack. Walk into its glare and you’re dazzled. Better yet, sit down in the ray and bask in the warmth and light of our Father’s choices for us.

There’s a lot I can’t do. I can’t run, some days walking is hard. But I will outrun my illness. For now I can run metaphorically into the arms of my Saviour. I look forward to the day when I will physically run into Glory taking deep gulps of breath. And maybe even yell ‘Hooray!’ at the same time.