Cerebral Palsy

Today I am wearing green for World Cerebral Palsy Day. You might think, like I did, that cerebral palsy is not very common, but it affects 1 in 400 children in the UK*, and of those 1 in 10 use Alternative and Augmentative Communication (AAC)**. Apart from statistics like these it is very difficult to generalise for cerebral palsy, as the brain damage affects us all differently. But for some reason it is seen as fine to generalise for physically disabled non-verbal children, and to yoke us with the educational label PMLD, and assume we all have a Profound intellectual disability. For me, and many like me, it is these assumptions which are the most disabling. Assumptions that, because we struggle to communicate we must be intellectually disabled; assumptions that we need to be talked to and treated like toddlers; assumptions that our quality of life is determined by labels.

In researching for this blog post I found some very depressing videos about what it is like to live with someone with cerebral palsy; but I also came across some great examples of people with cerebral palsy loving active and fulfilled lives, with the support of their family. People like the Cheetham family (see video below), who use social media platforms to raise awareness about cerebral palsy. Hannah answers questions on her AAC device and shows how fulfilling life can be.

In solidarity with everyone who has cerebral palsy I wear green, but just like the clothes you wear don’t define you, so cerebral palsy, PMLD or any other label does not define us. Next time you meet someone who looks different to you, speaks differently to you, dressed differently to you, take some time to get to know the person rather than make assumptions about them. That way we can all enjoy a life full of colour.

Video of the Cheetham Family

* NICE 2017 ** NICE 2020

National Poetry Day

Today is National Poetry Day, and the theme this year is vision.  During the summer I was asked to write a poem for the Diana Award to celebrate the amazing visionary work that the award recipients do across the world.  Princess Diana believed that ‘young people have the power to change the world’, and the recipients demonstrate that in spadesful from Faith producing thousands of blankets for people undergoing cancer treatment in Canada, to Nikhiya supplying bags, books and blessings to thousands of Indian school children, to Nik advocating for kindess and equality in the UK.

Here is the poem I wrote, and some Diana Legacy Award holders reading it. Enjoy!

Diana Award Video

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
Life.

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:

#ThankfulNotFearful

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!

Friendship

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!

#ThankfulNotFearful

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.