Random acts of wheelchair kindness

17/02/2017 at 11:07 am | Posted in Uncategorized | 2 Comments
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This year, Friday 17th February is Random Acts of Kindness Day. But I would like to make the case that for some members of our society – such as my disabled son – kindness from strangers is an every day part of life. It always has been, in all of his 21 years.

In an age of austerity cuts and the resurgence of prejudices, I feel it’s important to say that many people of every political persuasion and indeed none are routinely compassionate and caring, every day of every year. In our family’s direct experience, kindness is the norm. Sure, we get tactless stares and thoughtless comments – but these are cancelled out by generous deeds and unexpected favours, from all directions.

My son Tim has always looked disabled. He has always needed a wheelchair. From the age of 16 he has needed oxygen therapy, which means a cylinder, tube and small mask wherever he goes. There is no question that Tim looks different from the norm – whatever that might be. If Tim’s disabilities were invisible, I understand from other special needs parents that his experience might have been less rosy. I can only write of our own experience. And that is, on balance, clearly positive.

When Tim was younger, strangers would routinely offer him cuddly toys which were sometimes bigger than him. Countless others – the most unlikely characters – would give him smiles. I remember wheeling Tim into a rather rough-looking pub in Cornwall. The proprietor was a middle-aged woman with a craggy face – austere and tough. She looked at Tim. Her face broke into a wide, kind smile. She became utterly transformed… actually beautiful. Thousands of others have smiled at Tim, but she stays in my mind because her kindness transformed her so completely.

At this point I have to confess that Tim has jumped many queues, and got into places without paying – because kind officials have ushered him through. From Blackpool Pleasure Beach to Disneyland, Tim has received VIP treatment. He even once got into the VIP enclosure at Brands Hatch to see a Formula One race without flashing a ticket. In some of these places the policy has been an official one. In others, it’s come down to the kindness of an individual at the gate.

When Tim was 14, he became very poorly while on holiday in Florida. We were offered family accommodation at the local Ronald Macdonald House near Wolfson Children’s  Hospital in Jackonsonville, where Tim battled for his life in Intensive Care. His sister remembers receiving at least one present every day, and I remember that kind strangers booked up six months ahead for the privilege of cooking fabulous meals for all who stayed there. I’m personally sure that the kindness we received contributed to Tim’s speedy recovery.

Tim’s own attitude has to be mentioned. He smiles easily: a wide, generous smile that tells strangers he enjoys life and he doesn’t judge others in any way. He is visibly comfortable with the fact that he receives help from people. Again and again I have witnessed that Tim’s fun-loving and relaxed outlook makes it easy for strangers to be kind around him.

Advocates of equal rights for disabled people – and I am one of these – might argue that disabled people don’t want special treatment. They just want equal treatment.

Of course that’s true. Maybe all these favours could seem patronising. But I don’t choose to look at it that way. The truth is, being a physically, learning and health-challenged young person is unfathomably difficult, for the individual and the whole family. Tim lives at the edge of what is medically possible. So I look on him, and others like him – as something of a hero. And it’s perfectly reasonable for society’s heroes to receive accolades. The key is to accept the well-meant gestures gracefully.

This kindness even extends to those who care for him. Not so long ago Tim and I were sitting in the square next to Bath Abbey when a woman came up to me, holding a bouquet of scented flowers.

“These are for you,” she said to me. “Because I think what you’re doing is amazing.”

Recently Tim celebrated his 21st birthday with a restaurant meal. His friend and carer Bonnie was busy helping Tim to eat his puréed version of Sunday Roast. Her gentle patience was witnessed by a stranger in the bar. The young man secretly delivered an envelope to our group, to be handed to Bonnie after he had left. Our group got the timing wrong, and Bonnie received the envelope while the man was still present. Inside was a £20 note. Visibly moved, Bonnie went to thank the man, and the two hugged.

That hug between two kind strangers is what Random Acts of Kindness are all about. Who benefitted most: Bonnie, the kind stranger, or even the rest of us, looking on? The truth is, kindness given generously and accepted with genuine appreciation connects and benefits us all.

This article has also appeared in The Huffington Post. 

Why I value my son’s multinational carers

30/06/2016 at 9:32 am | Posted in Uncategorized | Leave a comment
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This article has also been published in The Huffington Post.

My 20-year-old son has multiple health issues, and learning difficulties. He therefore needs 24/7 care. He lives, term-time, at an outstanding specialist college. He is looked after by a fantastic team of carers, or facilitators, who come from a whole range of different places, including England, South Africa… and, of course, Eastern Europe. Poland is high on that list.

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I would love to give the whole team bouquets of fragrant flowers. But I’m a little too British and reserved for that. The facilitators do so much for him. They cut his hair, trim his nails, help him to eat and drink, and routinely handle life-saving medical equipment under the supervision of his amazing nurses. They also support him to study, exercise and socialise – all the things that make life worthwhile. And they do it all in a way that respects him as an individual. He enjoys life, hugely. That’s only possible because of the team that supports him.

Over the weekend I spent an afternoon with my son. During that period, a carer arrived who was new to me.

“Where are you from?” I asked her.

“Poland,” she said. She didn’t say it with any sense of happiness. Though she smiled, she wasn’t exactly glowing. All was not well.

I paused, acutely aware of the ongoing post-Referendum backlash against Eastern European workers.

“I want you to know,” I said, “that we’ve both just signed the Petition.”

She looked surprised.

“You know, the Petition for a Second Referendum.”

“Yes, I know about the petition.”

I went on to explain how my son had communicated, very clearly, that he is keen to support his European friends and carers. He had taken great pleasure pressing one finger against the green box on the Petitions page. He had been keen to confirm his vote by email.

“Oh,” she replied. “I’m so glad you told me. That is really good to hear. It’s not pleasant at the moment, knowing that so many people in England don’t want us here. It’s not a nice feeling.”

She was visibly moved. When she left the room shortly afterwards, I have a feeling that there may have been tears.

The reality is that we get a huge amount of help – real, physical, caring help – from Europe. As the mother of a young person with complex needs, I know that it would be really hard to get enough of the support we need if we were to close our borders.

My son’s facilitators, with their diverse backgrounds, literally bring the world to him. During his intermittent hospital admissions, the carers stay by him. During long hours at my son’s bedside, my family has learned about different countries from a personal, human perspective. My son has absorbed all this information.

My family has learned on a deep level that humans are not so different from one another. We share remarkably similar values. We laugh at the same things. We cry with the same sadness. We all of us worry when we feel under attack. And we love in the same whole-hearted, hopeful way.

People are people, wherever you go. It’s only the background that changes. We are enriched beyond measure by the clever, compassionate, caring individuals who help our son. That includes all the ones from Britain, South Africa… and Eastern Europe.

The petition may, or may not result in a second Referendum – I hope it does. At the same time, although I voted Remain, I do respect and share the view that EU reform is needed.

However, I think the Petition’s purpose runs deeper than politics. Signing is an act that shows the many European residents in this country that we do welcome them, and are grateful for the work that they do.

I don’t give my son’s facilitators bouquets of fragrant flowers – perhaps I should. But I certainly hope these words will let them know how much we appreciate them.

 

This is what I learned, living in an Intensive Care Unit

23/05/2016 at 7:21 am | Posted in Uncategorized | 5 Comments
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This post has also been published on the Huffington Post. 

Recently I had the rare and shocking privilege of living in an Intensive Care Unit, or ICU, for three months. I was not a patient, nor a member of staff. I was there because my teenaged son became critically ill. Tim’s learning difficulties meant that he needed his dad or me to be with him virtually all the time. I stayed every night for the first month, and then around five nights a week thereafter.

It had happened with frightening speed. We had been at home, about to eat supper, when Tim collapsed with breathing difficulties and an ambulance was called. Tim’s resourceful younger sister speed-packed overnight bags while the paramedics administered huge amounts of oxygen.

By the time we reached the hospital, Tim was drifting away. He was put on a ventilator, then transferred to the ICU. Tim’s dad and I sat in the waiting room. Fear. Waiting. Fear. And so, although I didn’t know it then, our three-month sojourn began.

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In this life and death situation, my choice, as a mother, was binary. I could choose love or fear. Love meant seeing the good in every particle of this unwanted experience. Fear meant resisting it. Fear would drain me of energy. Love would enable me to channel all my energy into helping my son.

I resolved to choose love. That didn’t mean I wasn’t frightened. It’s just that at every point of awareness, I chose love. I decided to view the experience as a retreat, in which I would learn from the kindness of nurses and the alchemical wisdom of doctors.

During those three months, I learned that crisis means looking after yourself as well as doing your best to help others. Specifically, I learned the following five insights.

1. Appreciate and care for your body.

Of the three groups of people who passed through the ICU – patients, relatives and medical staff – the fittest group were the medical staff. They drank lots of water. In their spare time, they went to the gym, did yoga, meditated, cycled, danced, played tennis, rode horses, ran marathons…. They weren’t obsessive. Chocolate and crisps were regular treats, especially during long working shifts. However, there was a belief that exercise was important, and that it might help them to avoid ending up in a hospital bed on life support.

2. Pause, breathe. Sit still in silence every day. 

Meditation can be done among beeping machines, and it calms turbulent emotions like nothing else. Even in extremis, the mind can become clear and calm, like a deep mountain pool.

The first night, sitting with my son, I found it helpful to breathe in a silent ‘I am here’, and breathe out a silent, ‘now’. It enabled me to ground myself in the shock of this new situation – to accept it. Consequently, I became a calmer presence for Tim.

Meditation enables us to pause before we blindly follow external voices of authority. I felt that, deep down, Tim resolutely believed that he could recover, even though the medical staff had little hope. So his dad and I chose to support him assertively in his belief.

3. Give healing when you are drawn to do so. 

Call it what you will: healing, prayers, love. Just do it. You’ll be in good company. A recent Gallop survey showed that nearly 90% of Americans have prayed for healing for others. A quarter have practised laying on of hands. Every day in the ICU, I sensed the presence of major disturbances in Tim caused by pain, drugs and fear. When I consciously directed love to him, it seemed to me that the disturbances lessened. At the same time, I sensed that many other people were praying for him and sending healing.

I massaged my son’s limbs with lavender and sweet almond oil, and visualised golden white light entering my son’s inert body, energising and healing every cell.

4. Choose uplifting language. 

On Day 3, a time of minimum hope, I drew a good health mandala picture for my son, with encouraging words among brightly coloured flower petals and leaves. I wrote a note below it: `Deep down, you are healthy and well, and have the energy, determination and love that you need to thrive. I love you very much, always’.

5. Adopt a mindset of wellness. 

As Tim thankfully began to recover, he was keen to leave his room and explore the hospital by wheelchair. We visited the maternity ward’s pretty garden. We went painting in the children’s ward. We danced with dementia patients. We circled a small peaceful lake in the grounds. One day, ten family members went for a walk around the hospital, with Tim frail but determined at the front. We also discovered a rehab gym, and Tim developed a reputation among the doctors for visiting the gym every day.

All these deeds created an impression around Tim that he was on his way to being fit and well. The collective thinking around him changed, from scarcely any hope to cautious optimism. In turn, that spurred him on to become more adventurous. In short, he was acting like a young man who, despite his disabilities, was used to leading an active, even sporty life.

On Day 96, Tim was discharged from hospital. Our family was so thankful. I now understand that crisis is a natural part of life. Sooner or later, stuff happens. Our challenge is to choose those moments, as much as the long calm periods in between, to live life to the full – however long it lasts.

Bookmark your intention

10/04/2015 at 8:34 am | Posted in Uncategorized | 1 Comment
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Not so long ago, I was doing a lot of caring for others, and forgetting to care for myself. Therefore, I was running on empty: constantly tired; crabby. My caring for others had become a monster that went through the motions and denied my loved ones the true energy of compassion.

This went on for several days. Then, one morning, in that dreamy state between sleep and awakening, I saw a bookmark hovering in front of me. You know, the long, thin rectangular sort that you put in a proper card-and-paper book.

“Bookmark your intention for today,” said a wise teacher who was invisibly beside me. And at once I saw words appearing on the bookmark. I understood then that I was choosing a simple, uncomplicated intention for the day. My intention – far shorter than a typical ‘to-do’ list – was to help a particular relative in a specific way, and also to care for myself. That was all. Sure, there would be other activities in the day, but my intention was just those two things.

And with that knowledge, I stopped feeling tired and overwhelmed. The energy of life and compassion returned to me.

Additionally, I understood that each new morning benefits from a fresh bookmark, spelling out an intention for that particular day.

What is your intention for today? Keep it simple. There’s only room for a few well-chosen words on a bookmark.

A rose for hard times

31/03/2015 at 7:52 am | Posted in Uncategorized | 4 Comments
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There’s a simple meditative technique we can use in hard times. I call it the Rose Meditation. You can do this anywhere: cleaning the house, ploughing through work, undergoing medical treatment, in a high-voltage meeting….

All you do is this: focus, in your mind’s eye, on a rose. The example shown here was photographed after rain, in the sunshine of the Dordogne.

Picture the feather-light, velvety smoothness of the petals. Imagine yourself miniaturised, resting between the scented petals as though they are the softest bed in the world. Breathe in their heavenly fragrance.

Notice the variations in colour between the inner and outer petals. Absorb the beautiful colours with every cell of your body.

Touch the raindrops; taste their sweetness.

Explore the petals, going inward towards the nectar, and outwards again towards the sun and fresh air.

Do this visualisation any time you feel the need. The rose contains powerful therapy, and simply thinking about it in this way can be soothing, and healing.

We’re meditating on the word ‘journal’

05/03/2015 at 4:31 pm | Posted in Uncategorized | 2 Comments
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This week we’re meditating on the word ‘journal’. Many of us write journals. We love the act of buying a new notebook. There’s something gently intoxicating about the texture and scent of pristine pages. The writing itself is therapeutic. Often, it’s during the act of writing that we recognise how we actually feel. A journal, kept for decades, can even become a family heirloom.

And yet, even if we never put pen to paper, we are still recording life’s experiences, on the canvas of our own bodies. Habitual emotions are etched onto our faces through countless repetitions. Stored traumas alter the way we move our muscles and block the spontaneity of our movements. Happiness, in contrast, causes us to soften and glow. As Caroline Myss, author and speaker on human consciousness, has said, “Your biology becomes your biography.”

Meditating on the word ‘journal’ can be a challenge. We may not want to revisit the tricky times that are now indelibly recorded in book and body. Many of us would rather keep our life journals firmly closed. We may therefore feel resistance, even while we’re sitting still and trying to clear our minds.

However, there is a simple trick that can transform this meditation. I’d like you to picture, now, the brilliant white light that you can sometimes see emanating from a beautiful clear crystal, such as rock quartz. The light comes from a plane deep inside the crystal. Its beauty, shining from within, is a reminder of your own inner light. In your meditation, picture that light radiating from the pages of your journal, or from the canvas of your body.

It’s possible to see all of life’s events as though they were lit from within – with a soul light, if you like. From that perspective, it’s easier to recognise the gifts within a challenging experience, and also the new skills we’ve acquired from it, such as self-respect, wisdom and forgiveness.

A haiku travel journal

27/06/2014 at 5:41 pm | Posted in Uncategorized | 5 Comments
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On the plane between London and Hong Kong, I thought I’d write a travel journal with a difference. Each day, I would write a haiku poem. My understanding of haiku is that it distils nature and our own true nature in a few short lines. In the English version, that most often means 5 syllables, then 7, then another 5. I wanted to do this for fun, and also to see if it brought me new insights.

The writing began as soon as we reached the refuge of our comfortable hotel.

Lily

Guan yin tea and bath

Fragrant lilies scent the dark

Harbour lights beyond.

Haiku traditionally loves contrast. Intuitively, I love the space between contrasts. During our days in Hong Kong, I was beginning to notice a very human trait: in the act of concealing, we end up revealing.

Leaves

Incense and Man Mo

Tiny shrines by shops of jade

Bird song on the Peak.

We were travelling as a family, which included my 18-year-old son Tim, who has learning difficulties and uses a wheelchair. Quickly we discovered that the streets were empty of others like Tim. It dawned on us that were connecting with a culture which believed that young people with special needs should stay at home.

An owl stares at us

in the Museum of Art

Kowloon’s rich treasure.

Most people simply, politely, ignored Tim, as they might ignore anything embarrassing, though we noticed plenty of covert glances. However, one day a taxi driver became visibly upset when he spotted Tim, and hissed at us while he drove erratically to our destination. We brushed off his crazy behaviour. But we wondered about it. We were beginning to feel that Tim – and we – were intrepid simply by being there. Mad taxi rides aside, we felt rather pleased with ourselves.

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Wow! Dim sum Tim Tim

at the old Luk Yu Tea House

Fountains and Flowers.

Someone told us one evening that the Buddhist belief in reincarnation was often interpreted to mean that handicapped children and young people must have done something wrong in a previous lifetime. Therefore, their presence brought shame to their families.  They were hidden away. Sometimes neglected, sometimes worse. Unwittingly, we were challenging that tradition.

After the sampans

barefoot in a sandy bay

Gods gaze at the sea.

Maybe all that scrutiny had something to do with it, but Tim’s wheel chair slipped on the sandy steps by the watchful concrete sculpted gods on the sea shore and he bruised his foot. Moments before the accident, I had been searching for Guan Yin, the Chinese goddess of mercy, among the seaside statues, but only found a rather overblown version of her, stripped of any spiritual truths.

However, I did experience peace each morning as I meditated in our high-up hotel room. I witnessed night turn to day.  And in that quietness the insights emerged.

Harbour

Morning mist makes clear:

we came to see, and be seen.

Each of us is loved.

That then was the truth we were exemplifying as a family. Sometimes it seems to me that the four of us (including Tim’s able younger sister) are four corners of a square. Each corner is equally important to create the whole. Each of us is equally valued within the family. This is normal for us, and perhaps also for our culture.

And then I wondered if perhaps families like us might tacitly encourage other families to take their disabled members out and about a bit more.

I noticed that I had begun my haiku travel journal with reference to Guan Yin – or, at any rate, the green tea named in her honour. And now I was ending my journal with the same sacred name.

Love and compassion

are divine gifts from Guan Yin

May all feel both here.

Lily

Goodbye, Dr Nocebo

02/04/2014 at 7:00 pm | Posted in Uncategorized | 16 Comments
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Blossom believed blog

Easter, three years ago. My teenaged son, Tim, is still convalescing after a critical illness in Florida. We are now back in England, and he has caught a new chest infection. He goes to hospital where he is put on intravenous antibiotics. I stay with him. It’s not really possible to leave Tim on his own, because he has complex learning difficulties and other people don’t understand him.

So we are sitting in the hospital, day after day, and nothing much seems to be happening. Tim’s not getting worse, but he’s not getting better either. Some days I don’t even spot a doctor. Tim is scarcely eating, so I ask to see a nutritionist, but am told that all the paediatric ones are away. After a couple of days, an adult one materializes and gives me some food supplements. I am grateful for those, but surprised that I had to work so hard to get them. Surely this is the sort of thing that Tim’s doctor should pick up on?

To be fair, there are some very good nurses around, and a lovely school teacher. But apart from them, the atmosphere seems lacklustre. I can’t help comparing it with the medical team that saved Tim’s life in Florida. They seemed full of energy and a belief in their skills and medicine. They didn’t think Tim would pull through, but they did everything in their power to help him, and were thrilled when he made it.

Here, in contrast, it feels as though Tim has been somehow written off.

One morning a doctor comes into Tim’s ward. It wouldn’t be fair to give his real name, so I shall call him Doctor Nocebo.

Absolutely, the name is symbolic.

Nocebo effect: when a person in a position of authority, such as a doctor, leads a patient to believe that they are going to get worse. This negatively harnesses the patient’s own unconscious power to alter health outcomes. If the patient believes the doctor, the nocebo prediction can become a self-fulfilling prophecy.

The opposite of the nocebo effect is the better-known placebo effect: the body’s innate ability to heal itself when it believes it can. Drug trials have to take the placebo effect into account because a high percentage of people get better when they believe in an imaginary medicine.

Dr Nocebo is accompanied by a handful of medical students.

While they look on, he gives Tim a cursory examination. He notices Tim’s physical disabilities: his very pronounced spinal curvature, his tendency to lie still while he’s ill.

Then he turns to me and tells me, in graphic detail, how Tim will get more and more chest infections and they will become more and more frequent. And he will die – the implication is sooner rather than later.

As he talks, I feel faint. There is something inhuman about the way Dr Nocebo is delivering this news. It almost feels as though he is showing off his power in front of his students.

That evening, I go to a small parents’ bedroom near the ward. I get into bed. I lie there, in the dark, and worry about Tim’s slow rate of recovery.

And then it happens. I hear a voice: loudly, insistently, inside my mind.

“Suzanne,” it says. That’s all. But accompanying my name comes all sorts of information. It’s a full conversation, delivered in one word.

I realize straight away that I have fallen prey to the nocebo effect on my son’s behalf. I have been picturing Tim getting more and more poorly. I have believed Doctor Nocebo’s words.

I now have an urgent job to do. I must visualize my son well. And I must keep doing it.

The actual visualization comes with great ease. It is as if someone is leading me through it.

First I picture, in great detail, that I am standing in beautiful countryside. There are fruit trees in blossom all around. In front of me is a healing temple. I walk up 10 steps, and enter the temple. I go to the reception desk, and sign in. I am given a special healing disc to wear around my neck, over my heart.

I walk across the light and airy atrium, to the healing centre of the temple. There, I take a seat. In front of me is a shimmering space. I picture Tim in the space, receiving all the healing he requires. Before my eyes, he becomes well and strong.

I leave the temple, still wearing the disc.

Blossom believed blog 3

The next day, Tim’s dad Steven is the lucky one who gets to see Dr Nocebo. The doctor of doom duly gives Steven the same talk he gave me: your son will soon die, etc.

Steven, being the practical one, asks: “Yes, but what about exercise? Won’t that help?”

Steven is fully aware that Tim normally does lots of physiotherapy and yoga. Dr Nocebo just sees a pale and poorly disabled child. He has no idea that when Tim is well he can be pretty active. He can, for example, stand up on one leg, with support, and do the Tree position in yoga.

Take that, Dr Nocebo!

“Oh yes,” said Dr Nocebo, surprised. “Yes, that could help.”

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In my imagination, I return to the temple once a day. Each time, I first go to the reception desk. The healing disc I wear over my heart is checked. Each time it is black and smoky with negative energy. It feels polluted. So I hand it in and receive a new one. And then I go to the healing area in the centre of the temple, and picture Tim strong and well.

In real life, Tim does get better, and we leave hospital. But even at home, whenever I feel the need, I continue to visit the healing temple, in my imagination, on his behalf.

I notice, on my visits, that the healing discs aren’t getting so polluted. Then, on one visit, I am given a special, permanent healing disc to wear. People gather round to congratulate me. I realize that I have graduated to a new level. This new disc is gold and iridescent. It will stay naturally clean of negative pollution. However, I will still get it checked at the reception desk from time to time.

~ ~ ~ ~ ~ ~ ~

Soon after Tim’s encounter with Dr Nocebo, I realize that there is just one more thing to do: we need to change hospitals. So I arrange for Tim’s care to be transferred to a newer and better hospital. We don’t get to see the new consultant for 18 months though. There is no need. Despite his disabilities, Tim enjoys a period of excellent health.

~ ~ ~ ~ ~ ~ ~

Unfortunately, Dr Nocebo has many cousins, all equally negative and miserable. So if you happen to encounter one of them, remember this: when Dr (or Mr or Ms) Nocebo talks negative, it’s up to you to visualize positive.

Blossom believed blog 2

 

 

 

Of storms and miracles

28/10/2013 at 9:11 am | Posted in Uncategorized | 4 Comments
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Sunset and fiesta

Wind and lightening came at 5 am. We were prepared. The apples ­– Fiesta and Sunset – had been gathered. Windows and gates were fastened shut.

The raw, elemental power of the wind hit our windows almost full on. The howling sound as it tore through the trees was unrelenting. We couldn’t see, but heard the sound of branches being torn out and raked along the ground by nature’s pruning shears.

In the darkness it’s so easy to become wide-eyed, to lie in bed with teeming thoughts. So I said these most reassuring words: “I am safe, and all is well”.

The “I” in that beautiful mantra stretches beyond the individual, to all who may be in need of reassurance at that time: “We are safe, and all is well”.

And suddenly, all was well. The high-velocity air became a friend once more: a welcome agent of change.

The storm has passed. It’s sweeping eastwards. Meanwhile, the rain is still with us. There is an Atlantic freshness in the air. I notice that my mind feels like a newly ploughed field: well-watered and fertile. All I have to do is plant my questions and the answers will grow.

This One is Special rises to the surface of my thoughts. This book that I am writing is all about my experience of having a child with undiagnosed special needs. He has been called a miracle child. After thStrange, that it’s come to mind in the context of the storm. I know that there will be a good reason for it. Somehow, in a way that I don’t yet see, the two will be connected.

“You want to know about the Miracle Child?” asks my inner voice of guidance. “The Miracle Child is not one person. It is each one of you. Every human being is a miracle child. When you share your story, you remind readers who they really are.”

I ask for clarification. My guidance directs me to a dream I had five years ago, entitled ‘The Angel Labels’. So I retrieve the relevant dream diary from a drawer. My eyes go straight to the following paragraph:

“I woke from that dream understanding the power of words and symbols. I saw that everyone is like a blown glass vessel – like a Christmas decoration – with a hazy, open bit at the top, connecting us with all that is, from whence we are blown.”

“From whence we are blown…” I love that expression. I was born into a Mediterranean storm. I am literally a child of the storm. However, according to my guidance, we are all blown in from the heavens, from the All That Is. So when the storm comes, don’t be afraid. Be glad, because it signifies birth: birth of the new you, the Miracle Child, who is blown in from the Universe, and eternally connected with it.

Today, this moment now, is fresh and sparkling and new. Your life right now is a new life, full of fertile possibilities. Whatever age you think you are, the reality is you are young, and vibrant, and the world is lying before you: fresh, and new and fun.

Retrieving the miracle child

29/08/2013 at 6:26 pm | Posted in Uncategorized | 21 Comments
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Miracle ms

It’s 10 pm in the evening. The children are asleep upstairs, Steven is out at a dinner in London. And I am about to open a time capsule.

I’m nervous. I decide to put off the moment by walking to the fridge and getting out a beer. I open the bottle, toss the metal cap in the recycling caddy. I pour the beer. Without even taking a sip, I put the glass of beer down where I promptly forget about it. I rinse the bottle out, and place that too in the recycling caddy.

My mind is turbulent. I haven’t looked at the manuscript of The Miracle Child in maybe 14 years. It belongs to a different era. Why mess with it now?

The reason isn’t hard to find. Three days ago I broke a long silence. I wrote a blog post about my 17-year-old disabled son, Timothy. I called it, ‘What I wish I’d said to Anita Moorjani’, and I posted it on Anita Moorjani’s Facebook page. The author of Dying to Be Me has a beautiful community there, where people bare their souls. It felt good to do it. I also posted a picture of Timothy with his dad, Steven. Choosing that photo made me cry. I knew a door that had been closed for quite some time was being allowed to open. I was allowing it to open.

When Timothy was little, when we were still living in Richmond, I wrote a book, called Coping When Your Child has Special Needs for Sheldon Press. And at the time of publication there were articles and photos of Timothy in one national paper, The Express, and a handful of magazines. But I left all that behind when we moved to Wiltshire. Without realizing, I became quiet on the subject of my beautiful, mysterious, disabled boy.

So why break the silence now?

“Wow, I was so moved by this blog post!!” wrote Anita Moorjani. “Thank you, Suzanne Askham. Next time, Suzanne, we’ll definitely talk more! Sending love and hugs to you and your beautiful son

After Anita wrote that, my blog was flooded with visitors. Their comments, shared stories and support were extremely moving to me. And I realized that it might be a good thing to be more open. It might be good for Timothy. It might be good for other children and young adults like Timothy. It might help other parents. And it sure as heck might be profoundly healing for me.

So that’s why in just a few minutes I’m planning to go to the spare bedroom at the far end of the house, lean down into a corner there, by the desk, and pick up a fat package in an old jiffy bag. It’s curious that over all these years, the manuscript has been kept in such an accessible place, yet never looked at.

What will the energy of the package feel like when I open it? I expect it to be drenched in sadness, and I’m dreading that.

“Why mess with it after so long?” I think again.

“Why not?” a small inner voice whispers back to me. It feels like the prompting of my soul.

The Miracle Child came about almost by itself. A dear friend, Tessa Phillips, knew a book editor at a London publishing house. She told the book editor about Timothy, and the editor suggested I wrote a book about him. She even gave me the title, The Miracle Child.

I liked the title a lot. I was worried, though, that Timothy and I might not live up to it. He was, after all, profoundly disabled. That wasn’t going to change any time soon. But there was plenty of hope and promise in his story.

So I quickly wrote the book, and in the process released a lot of anger. There was in me a fierce desire to help my son in whatever ways were possible.

But just as I was about to send the manuscript off, the book editor left, and the publishing house had no interest in The Miracle Child. I think I half-heartedly tried a couple of other publishers, who duly rejected it. A few friends read the manuscript and made supportive comments. And then, rather embarrassed about the whole thing, I put it to one side.

I figured that the universe had its reasons for arranging that I wrote The Miracle Child, and it had its reasons for the book not to be published after all.

~ ~ ~ ~ ~ ~ ~

I can’t put off this moment any longer. I go up to the spare bedroom, lean down into the corner, pick up the jiffy bag, and take it back to the living room. I bring the forgotten glass of beer with me. I feel that I’m going to need it.

The house is very quiet. There are no interruptions. There is nothing to stop me facing my past.

I open the envelope. I draw out the manuscript. I see an old-fashioned floppy disk in there too. I’ll have to get it converted into a modern format.

To my surprise, the energy of the manuscript feels quite different to what I expected. The over-riding feeling is one of… eagerness. This story is ready to be heard. It’s even excited about it. Wahey! It’s dancing a jig.

Yes, there is sadness. There were certainly enough tears as I wrote it. But the sheer bouncy energy of my younger self is apparent. There was rocket fuel in my blood at that time.

The Miracle Child reflects my dawning awareness during the first years of Timothy’s life. There’s a lot it misses out. I’m amazed, as I read through the pages, that I don’t mention the vision of bliss that I experienced in the year before Timothy was born. That vision is something I told only a very few people, until I wrote about for the first time three days ago in my recent blog post.

The vision of bliss was so influential; why ever would I keep it quiet? It sustained me throughout the hardest times. I am deeply, fundamentally grateful that I experienced it. Despite that, the 35-year-old me believed it was ‘woo woo’. I couldn’t possibly mention it in print.

Today, I would write The Miracle Child differently, for sure. But that is not the point. I make a decision. I’m not going to edit this. I’m just going to publish it, as it is, in its own raw energy – like an extended blog post. I’ll most likely release it as a Kindle book.

I waver. Do I dare to do this?

And then I think about the messages I’ve received from women in my situation. I’ve also heard from  others who have struggled themselves with a range of major health issues. Sharing and caring are what make us human.

This is my request to the Universe: may all those who are able to benefit from this book, get the opportunity to read it.

I’ll send off that floppy disc to a data retrieval company.

It’s time to share.

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