As summer sighs its last…

As summer sighs its last through a sunny September day it feels fitting to reflect on what this summer has been. Unusual springs to mind – quieter and less busy but blessed nonetheless. Lots of beautiful walks in parts of our county we hadn’t explored, plenty of picnics and smatterings of meeting friends and family from a two-meter distance. And the sea. Everything is put into perspective when you spend time at the beach hearing the rhythm of the waves and knowing that the tide will continue to rise and fall even after you’ve packed up and gone home. Creation held by the Creator.

Last week my sisters returned to school and all my friends did too. But we decided with my consultant that I will continue my subjects from home. Not an easy decision, but sometimes the right decision can be the hardest one. During lockdown I wrote a series of tweets using the hashtag #ThankfulNotFearful, but as the rules tighten again I think for me the challenge is now #JoyfulNotResentful. And there is much for me to be thankful and joyful about as my health is good, my friends keep in regular contact and I can attend my church every weekend. Without travel to and from school I also have more time for writing, so watch this space…

The Daily Walk

As you all know silence is my natural habitat. But usually I am surrounded by noise and chatter. Whilst I love being part of all the hubbub of family and school life, I also cherish time to be quiet and still with Jesus.

In lockdown we have gone for a walk every day, and at some point in the walk we have set the timer for 2 minutes so that we can be still and quiet. Being silent and still in God’s presence surrounded by His creation has been a blessing to us all, and one of the highlights of my day.

Exploring different aspects of our walk I have written two contrasting poems, a freeform poem for the beginning of the walk, and a Terza Rima sonnet for our time in the woods. Below there is also a small relaxation piece I have written to accompany the 2 minutes I recorded in the woods the other day, in the hope it will bless you too.

Isolating Walk

Like a faulty tap we splutter from the door,
Flailing limbs, squeezing, hopping, stamping,
“Wait for me!” Shambolic convergence,
Wheelchair propelled uphill, the nucleus
Of heavy heads full of:
Virus, news, statistics, death.

Pausing to marvel at lambs gambolling,
Frolicking, blissfully unaware in creation’s
Continuing, unremitting, unabating

Travelling the road, sisters rambling on,
Wellies stomping the tarmac river,
Questions flowing in unending curiosity:
What flower is this?
But how is the virus spreading?
Why is a buttercup different to celandine?
Will Jon-Jon be ok?

Reconnecting Walk (A Terza Rima Sonnet)

As guests upon the path we lightly tread,
Stooping under boughs of sentinel oak,
Bluebell’s rippling lake before us spread.

Empty; we immerse and plunge in to soak
Our wearied encumbered souls breathe deep,
At senses banquet, rejuvenate hope.

Silencing internal noise, outward speech,
Retuning to birdsongs insistent call,
Faint hearts are slowed as the Creator seeps

His natural balm our bodies enthral,
The soft peace of His whisper transcends,
Harmonised by insect’s tiny waltz,

Hearing, “Everything shall be well with all,”
As guests upon the path we lightly tread.

First get yourself comfy either sitting or lying down. Then as you become aware of your breathing imagine you are exhaling out all your worries and everything that jostles and fills your mind and feel yourself relax. Be aware of your body starting at your toes let them become still, floppy and heavy allow that feeling to work its way up slowly in to your feet ,ankles, legs taking your time let it gradually carry on up into your body, arms, neck and head. As you inhale, bringing life to your body, imagine it is the breath of God filling you and making you new. Allow yourself to be renewed by Him.

Pentecost Power

Yesterday was Pentecost Sunday and the birthday of the church, and it felt especially weird not to be in the church building, but of course just because we can’t meet in person doesn’t mean church is cancelled. So yesterday we listened to a radio service, watched our church on Facebook live, listened to a family prayer adventure podcast and joined a celebration event on Zoom. Thank goodness for modern technology enabling us to celebrate together!

With church happening in our homes it is perhaps easier to transfer the messages of Jesus from the service into our lives, though being with immediate family 24/7 it is sometimes more challenging to put it into practice!

This year I got a dose of my own medicine. Prior to lockdown even being on the horizon, I was asked to write a minute’s reflection on ‘offer’ for the Thy Kingdom Come initiative. Watching the finished result, voiced over ably by my sister Susannah and my friend Alaric, I realised I needed to hear and understand again how God’s Holy Spirit can transform our offering however meagre it may be. For me at the moment that means offering God what I can without being able to go out and meet people, trying to be a vessel for Jesus’ love within the limitations of the situation we are in.

My prayer is that we will all be filled with more of the Holy Spirit at this time.

Lockdown Lessons

On paper we might be about half way through our 12-week isolation during lockdown so it feels an apt time to think about what lockdown has taught me so far:


When I began tweeting using my hashtag #ThankfulNotFearful I wasn’t sure I would find something new to be thankful for every day, but looking back I can see my faith in the goodness of God was far too wizened and small. In reality I could find something different to be grateful for every day of the year during my daily constitutional in the local woods. The only restricting factor has been what my mother has taken photos of! For those not on Twitter below is a montage of some of the best photos.

Theatres, musicals and concerts

A few weeks before lockdown I attended a Bournemouth Symphony Orchestra concert in Bristol; it was a Christmas present and I was really excited to hear Grieg’s piano concerto. The Victoria Rooms in Bristol are a magnificent setting and I had been looking forward to hearing this beautiful, dramatic music live. And it did not disappoint. Tom Poster, the soloist, was captivating and the music resonated in my soul. My body had other ideas and halfway through the slow movement I had a seizure. Irritating and frustrating are understatements as I had to listen to the rest of the concert from the corridor.

But there were bigger ramifications of this seizure. Often in the past when I have gone to the theatre my body has spent time on the verge of a fit, and my mother and I put it down to the extra stimulus of the theatre. It certainly makes me cautious about going to live concerts and theatre. And certainly not with my sisters, because they would find the seizure very scary and it wouldn’t be fair.

So, what does this story have to do with lockdown? Suddenly, I can go to the theatre with my whole family, sat on the sofa in the front row. We have attended musicals, plays and concerts, and so far, without my body thinking about kyboshing the experience with a fit. And we’ve had so much fun!

But theatres are not the only ones to open their doors. In reality I can’t travel abroad due to my health, but thanks to the internet I can now visit lots of interesting places: Pharaohs tomb, Jerusalem’s Gihon spring, a gondola ride through Venice to name a few. And a roller-coaster ride in Hong Kong with my sister screaming next to me.

With Daddy at home we even get to go to church together every week.

Friends and family

Like many people, I am missing seeing friends and family in person. There is nothing like a Grannie cuddle or bantering with friends in the school corridor. But modern technology and lockdown means I am in contact with some people much more than I would be normally, so I see Gran on skype most days, have an etymology lesson with Grandpa once a week, and play on zoom with my friend from church every day. Last week we worked together on a poem about friendship for the zoom youth group meeting on Sunday, which is below.

Stay safe, give thanks in every circumstance and love greatly!


Time expands when laughing together,
Creativity abounds in our shared endeavour,
Entertaining ideas, hilarious jokes,
Happiness and fun our friendship evokes.

We share all our secrets, with nothing to hide,
We can always be found by each other’s side,
A lifetime of constant morale and support,
Disability no barrier in eternity’s court.

By Alaric and Jonathan

Stay safe, give thanks in every circumstance and love greatly!


Writing as Therapy

In this time of uncertainty and lockdown, we are all searching for new things to do. Sometimes it is difficult to process all the changes that have happened to us in the past few weeks, but there are also lots of things we can do to help ourselves and those around us. Every day I have been documenting something I am thankful for as an antidote to fear under the hashtag: #ThankfulNotFearful.

Writing can be a cathartic way to express ourselves and enjoying the writing of others through reading or listening to books is a wonderful escapism. How about starting a journal where you can write down your thoughts and emotions? And writing a letter to someone who is alone is a great way to spread some love to others.


Cerebral Palsy, Coronavirus and Me

Finding words to describe the condition that has had the most impact on my life is difficult, so when CP Teens asked me to be one of their faces for cerebral palsy month I decided to portray cerebral palsy as a monster.

At the moment we are facing a monster as a nation with this insidious virus and I am aware that for those already living with the occupying forces of cerebral palsy our defences are weakened to further attacks. I am praying for all my friends.

But I am also praying for everyone who is gripped by fear, because fear is far more dangerous. Fear doesn’t just threaten our physical health, it monopolizes our mental health and paths the way to selfishness. Perfect love drives out fear. So every day I pray to Love Himself and am filled with gratitude – there is so much to be thankful for. Every day I will post on Twitter what I am thankful for.

Let’s Talk About Loss

Last week that is exactly what I did – spent the evening talking with Chris and Beth French about bereavement, the organisation that Beth runs, ‘Let’s Talk About Loss’ and preparing my sisters for when I have died. Reading that, you may have an image of glum faces and the evening permeated in sadness; but instead we had good, honest conversations punctuated with laughter in a room saturated in peace. It was a truly blessed time.

In December 2018 Beth and I met at the House of Lords, where we had both been short listed for the ‘Rising Star Award’ (she won it!) and since then we’ve met up in Bristol on one of my many clinic days. Earlier last week, she was featured on the BBC website talking about how awful bereavement cards can be, and launching some alternative cards with useful tips on what to write in the card.

But Beth and I have more in common than awards and a desire to break down taboos around death, dying and bereavement; we are both Christians and actively involved in our local churches. So we got on to talking about how churches can be better at supporting the bereaved and the tension between the very real pain of grief and the wonderful promises of heaven. In a way, Beth and I embody this dichotomy as she grieves for her mother and I can’t wait to go back to Jesus’ garden. As a body of believers we need to get better at holding both sides of this, as encapsulated in the story of Lazarus in the bible.

Transplant Turns Ten

Yesterday it was ten years since I had my kidney transplant, which has given us as a family a cause to be extra grateful, celebrate and eat cake.  At this time of year I am especially beholden to the family who donated their loved one’s kidney, enabling my health and quality of life to improve dramatically.  

In the spring Max and Keira’s Law will change organ donation in England to an ‘opt out’ system, which means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate. The NHS are asking everyone to: record their organ donation decision on the NHS Organ Donor Register, and tell their family and friends what they have decided.  Families will still have the final decision. 

As of 10th January this year there are: 6167 people waiting for a transplant, and every day someone dies waiting for a transplant.  

On my tenth birthday I wrote a poem in the form of William Blake’s The Tyger, so yesterday it seemed fitting to write one for my kidney.   My transplanted kidney came from someone older than my mother.  How weird to think that something inside me has been on this earth longer than my mother has!

My Transplant

Kidney Kidney, turning ten,
In the bodies of young men;
What ultimate gift from grief,
Could dying restore hope’s belief?

What memories are secured
Within your double lives endured?
What joys? What sorrows? And what pains?
As you beat life’s path – again.

Kidney Kidney, turning ten,
In the bodies of young men;
What ultimate gift from grief,
In dying restored hope’s belief?