Top 10 Disability Clangers. What not to say....

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What NOT to say to the parent of a child with disabilities. If you want to continue to follow my blogs on bloglovin please go to the new website and click on the bloglovin icon found on the sidebar of my new blog post. 

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Guilty or Not Guilty?

All my past and future blogs will be posted on my new website Born at the Right Time

Our spring-break did not turn out as I had hoped. For reasons beyond my control my plans for quality time with both my boys failed to happen and I was left with a sense of guilt. 

It seems since the day Son1 was born I acquired the innate ability to feel guilty. I have a tendency to carry this emotion in my backpack (see my earlier blog “A Road Less Travelled”) allowing it to weigh me down and complicate my journey. 

I think being a mum is fertile ground for guilt and this is magnified when you are the mum of a child with special needs. It isn't easy to explain but my experience as a mum for my son's is completely different. I have spent hundreds of hours trying to help Son1 learn stuff that Son2 simply woke up one day able to do. Success for a child with such complex needs as Son1 is often measured by things not getting worse. This level of complete dependence and high level input can leave me with an overwhelming sense of never doing enough. 

Just recently I read a really helpful blog titled “A better way to say sorry” (http://www.cuppacocoa.com/a-better-way-to-say-sorry/). It’s worth a read and helps formulate the process of repentance and forgiveness in four easy steps.

                      I’m sorry for…..

This was wrong because….

In the future I will….

Will you forgive me…

We have employed these principles with Son2 and they are now stuck to our fridge as a reminder to us all.  

With my emotions still fraught after the school holidays I went for an early morning run as part of my 'emotional management programme'. (See my photo as proof) Don't be too impressed though, my usual response to emotional baggage is to eat and when jogging I look more like Phoebe from friends than Jessica Ennis. However, one of the feelings I needed to tackle was the extraction of the pointless weight of guilt occupying my backpack as a result of a false sense of what I ought to have done with the kids at Easter. So while my breathing became laboured, my trainers hit the pavement and I began to pray going through the four steps;

I am sorry for feeling guilty for circumstances beyond my control

This was wrong because instead of changing my behaviour I just felt bad about myself and displayed this to my kids.

In the future I will try to be more realistic about my expectations, recognise my limitations and let go of feelings that only act as a burden.

Will you I forgive me? Erm...yes

It was a helpful process, not only did my spirit feel lighter but I began to recognise how my guilt had warped my perspective. The spring-break had been a difficult couple of weeks but it was also peppered with many small, sweet memories created by my wonderful family. And the next time I need to deal with rogue emotions my only hope is that a run isn't necessary, although the guilt free chocolate brownie afterwards did work a treat.

There is a brilliant book currently at the top of the non-fiction charts called 'The Chimp Paradox' by Dr Steve Peters. In it he talks about being hijacked by emotions. Are there any emotions hijacking your life and making your journey more difficult? Is there anything taking up far too much room in your backpack? Tell me about your strategies for dealing with these emotions, I'd love to hear of some less sweaty or calorific techniques. 

The Sun in our Solar System

All of my past and future blogs are posted on my website Born at the Right Time.

This week Son2 surprised me with a question:

"Can we go trick or treating?"

"It's ages away until trick or treating time,” I responded.

"Well when it is, can we go trick or treating?" I hesitated in consideration.

"I want to dress up as a ghost."

"Oh, ok,” I said, trying to sound interested.

"I could go with Daddy and S and we could be the Father, the Son and Holy Spirit."

I laughed so hard that Son1 too became infected and we both giggled uncontrollably. This conversation sums up Son2 perfectly. He mulls over information then applies it to life. He’s a geek, like his Dad, and interested in wildlife, space and history. In his bedroom the planets of our solar system hang suspended in the air and at night, when the lights are out, clusters of stars illuminate the ceiling.

Before my Son2 was born, our family’s own solar system simply contained the planets of me, my husband and Son1. In a couple of weeks we will celebrate the arrival of Son2's bright, energetic and chaotic planet, which before long filled our home with imagination, originality and creativity. He enlivens our family with flair, humour and joy. There is so much to celebrate when we take time to be thankful for him.

In our family’s solar system each of us are planets orbiting a sun, following our own paths like a carefully co-ordinated dance; interdependent, influenced by and reliant upon each other. I suspect most people have something in their solar system that can distort their view, draining too much energy or time. In the past I have found it too easy to slip into an orbit that solely revolves around special needs. There have been occasions when the moon of disability that revolves around Son1’s planet has dominated our family life, distorting our trajectories with its dramatic gravitational pull. Occasionally, it has felt as though everything is sucked into its grasp, becoming warped by its power and hold. But this moon is neither my son’s planet, nor our family’s focus.

I used to think the most important factor when making decisions about Son1's care or education was what was best for him, but that is no longer my gauge. Today we try to make decisions in relation to what is best for us as a family, considering what keeps our whole planetary system in order, not just the large disability moon, or even Son1’s world. We ask questions like, ‘How much of an impact will this have on everyone,’ or, ‘Should the needs of others in the family take priority at this time?’

I haven't always found it easy to know how to balance my time and energy as a mum and there have been times when Son2 has missed out at the expense of Son1’s care. It is easy to allow the large disability moon to dominate, permitting it to become the sun around which our planets circle. We, however, made a very clear decision not to let Son1 or his disability become our sole focus. Son1 gets a disproportionate amount of time, care and attention, and that is unavoidable, but we make every effort to ensure that each member of our family is held with prominence and value.

Choosing your sun is an important activity. Life can creep up on you and when you look around, the sun you are orbiting isn’t at all what you had expected or intended. It is important to ensure the force that is determining your path is a source of energy and light you want reflected in your life.

A couple of years ago we changed tack and rather than simply responding to the crises life threw at us, we began trying to make intentional decisions that felt like choices not reactions. We took time to define the sun we wanted to orbit, ensuring our focus and paths were being determined by the values we hold most dear. For everyone that sun will be different. In the core of our sun we hold the Father, Son and Holy Spirit, wanting our lives to reflect God as we love each other, living alongside the other solar systems in our galaxy.

I don't like squeezing...

All of my past and future blogs are now posted on my new website Born at the Right Time

I’m not talking about spots or half empty toothpaste tubes; I’m talking about life. As much as I go on about making the most of now, cherishing today and other such sentimental cliches, I’m very much against squeezing. 

Treasuring and squeezing are two very different things. When I squeeze an orange I get out a glass of lovely tasty juice but I miss out on the whole orange. I miss the aroma I experience when I peel the skin causing small sprays of juice to squirt off in all directions. I miss chewing the pith, allowing the liquid orange to explode in my mouth filling my senses as I swallow, triggering my taste buds to tingle with flavour. 

I used to be a juicer. I needed the quick fix, getting the most I could out of something before quickly moving on. My life was too full with a to-do list far too long. I used to think making the most of today, knowing my son may not be here tomorrow, meant squeezing. Squeezing myself, my energy my emotions and myself to the limits. My life was consumed with tasks I thought I had to do for my son for fear that one day I might regret not having taken the opportunity.

However, I realised that all this squeezing meant I no longer looked like me. I had been pulverised by my expectations and fear, driving me to try and do everything today at whatever cost to myself and my family.

It all began to change the day a young man came to stay with us. Not long after he arrived we discovered his older sister was twenty three and similar to our son on the ‘disability spectrum’. Instead of this news giving us hope, my husband and I reeled at the prospect of existing as we were for another twenty years'. Our reaction came from the single fear of life continuing to be as hard in twenty years time as it was now. I decided I didn't want to fear my future, I certainly didn't want to imagine life without my precious little boy. I wanted to live life in such a way that was not only sustainable but satisfying. 

Our lives had to change. I needed more help. I realised I couldn't be the mum I had created in my head. I realised...I’m not superwoman. I think we all have a ‘super’ something we are trying to be the squeezes and maims us. As Rob Bell so eloquently puts it in his book Velvet Elvis;

“You have to kill your super whatever.

And you have to do it right now.

Because your super whatever will rob you of today and tomorrow

and the next day until you take it out back and end its life.”

So I took to killing the super-mum, super-wife and super-Christian I was trying to be. Then after a painful period of cutting out parts of my life, relationships and activities, I began living with margins and space. I discovered that abundant living is much more about balance than squeezing. I believe there is a very good reason we are supposed to have a sabbath. Because life is about quality not quantity, and quality requires rest. I needed to pay for extra care (and I don't underestimate how lucky I am to be able to do so) while repeatedly drowning out the voices in my head telling me I should be able to do it alone, because when I get sleep and space I am a better mum and wife. 

If I ever get the opportunity to start up a charity it would focus on giving parents whatever help they need to get a good sleep. Sleep deprivation is crippling and makes the world a grey place. Sleeping at night allows you to see the full spectrum of colours in your life and your kids much more easily each day.

So now I'm learning that valuing today needs to include getting rest amidst the busyness. Creating the space to laugh, cry, reflect and live; not just cope. Each day I try to recognise my limitations (it's a work in progress) in an attempt to prevent me being squeezed. I've decided I don't want to be juice from concentrate; I want to be a whole orange.

I don't like squeezing...

I’m not talking about spots or half empty toothpaste tubes; I’m talking about life. As much as I go on about making the most of now, cherishing today and other such sentimental cliches, I’m very much against squeezing. 

Treasuring and squeezing are two very different things. When I squeeze an orange I get out a glass of lovely tasty juice but I miss out on the whole orange. I miss the aroma I experience when I peel the skin causing small sprays of juice to squirt off in all directions. I miss chewing the pith, allowing the liquid orange to explode in my mouth filling my senses as I swallow, triggering my taste buds to tingle with flavour. 

I used to be a juicer. I needed the quick fix, getting the most I could out of something before quickly moving on. My life was too full with a to-do list far too long. I used to think making the most of today, knowing my son may not be here tomorrow, meant squeezing. Squeezing myself, my energy my emotions and myself to the limits. My life was consumed with tasks I thought I had to do for my son for fear that one day I might regret not having taken the opportunity.

However, I realised that all this squeezing meant I no longer looked like me. I had been pulverised by my expectations and fear, driving me to try and do everything today at whatever cost to myself and my family.

It all began to change the day a young man came to stay with us. Not long after he arrived we discovered his older sister was twenty three and similar to our son on the ‘disability spectrum’. Instead of this news giving us hope, my husband and I reeled at the prospect of existing as we were for another twenty years. Our reaction came from the single fear of life continuing to be as hard in twenty years time as it was now. I decided I didn't want to fear my future, I certainly didn't want to imagine life without my precious little boy. I wanted to live life in such a way that was not only sustainable but satisfying. 

Our lives had to change. I needed more help. I realised I couldn't be the mum I had created in my head. I realised...I’m not superwoman. I think we all have a ‘super’ something we are trying to be the squeezes and maims us. As Rob Bell so eloquently puts it in his book Velvet Elvis;

“You have to kill your super whatever.

And you have to do it right now.

Because your super whatever will rob you of today and tomorrow

and the next day until you take it out back and end its life.”

So I took to killing the super-mum, super-wife and super-Christian I was trying to be. Then after a painful period of cutting out parts of my life, relationships and activities, I began living with margins and space. I discovered that abundant living is much more about balance than squeezing. I believe there is a very good reason we are supposed to have a sabbath. Because life is about quality not quantity, and quality requires rest. I needed to pay for extra care (and I don't underestimate how lucky I am to be able to do so) while repeatedly drowning out the voices in my head telling me I should be able to do it alone, because when I get sleep and space I am a better mum and wife. 

If I ever get the opportunity to start up a charity it would focus on giving parents whatever help they need to get a good sleep. Sleep deprivation is crippling and makes the world a grey place. Sleeping at night allows you to see the full spectrum of colours in your life and your kids much more easily each day.

So now I'm learning that valuing today needs to include getting rest amidst the busyness. Creating the space to laugh, cry, reflect and live; not just cope. Each day I try to recognise my limitations (it's a work in progress) in an attempt to prevent me being squeezed. I've decided I don't want to be juice from concentrate, I want to be a whole orange.

Flat-lining

All of my past and future Blogs are now posted on my new website Born at the Right Time.

At a recent admission to Great Ormond Street Hospital (GOSH) I sat in our small side room gazing through the dim light at blue and red lines dancing across a large screen. My son had been admitted for a prolonged EEG, to investigate his epilepsy.

Having pressed a button to indicate he was now sleeping, I looked upon his beautiful, soft features as his head rested on the pillow. His gentle appearance showed he was fully captivated by his slumber as his fingers lay uncharacteristically open and relaxed. Gauze and webbing encircled his head, holding more than twenty EEG leads securely on his scalp as they read his brain's impulses.

Sitting in the dark, I listened to passing feet echoing along the corridor and distant monitors bleeping, while the strong bleach hospital smell filled my nostrils. The cacophony stimulated my senses and transported me back to the first time I heard the term 'sleeping trace'. On that occasion it referred to the cardiac tracing of my unborn baby rather than the electric impulses of a brain. Having felt no movement through the night before my due date I had gone to the hospital for reassurance.

Once the Cardiotocography (CTG) monitor was attached to my rotund belly, the sound of my baby's heart beat comforted me as the midwife described the lines as showing a sleeping trace . Time passed and the readings remained the same without me feeling my baby move. Before long the term 'sleeping trace' began to be spoken like a four letter word, by that evening my son had been delivered and was strapped to his first of many monitors, struggling for his life. 

Eight years later in our darkened hospital room I recalled so much that had happened in the intervening years of his life. There have been many times when a machine was not necessary to tell me that his life hung in the balance. I had twice watched my husband give mouth to mouth resuscitation after a seizure stopped our son breathing, and whilst on a family holiday I had heard the broken English of French doctors explaining that a seizure lasting two hours now required our son to be airlifted to intensive care. So many memories of watching his growing body writhe and shake in various Accident and Emergency departments piled up on top of each other, as doctors struggled to stop his vicious and complex seizures. Each event is vividly imprinted on my mind, potent and palpable, like a recurring nightmare.

Around the room in GOSH expensive machines and cameras monitored every move we made. A night here was probably more expensive than a night at the nearby Bloomsbury Hotel, yet this didn't feel like luxury. As I prepared to sleep in a made-up bed next to my son, I was very grateful for the luxury of my most traumatic memories being securely tucked away, deep in my mind. With over three years since our last hospitalised seizure I was no longer daily walking the epilepsy tightrope, tense and waiting to be toppled. However, both my head and heart know there is only a hairsbreadth between us and another prolonged, life threatening seizure.

This reality, this understanding of life and its fragility, has fuelled in me a desire to hold today as cherished and invaluable. There have been days, however, when I haven't been able to appreciate this truth. My vision has been too distorted by tears, my muscles too fatigued and my perspective too warped with pain, draining me both emotionally and physically.

One thing I now know is that when I cannot change what happens around me, I am changed by what happens around me. When life is a struggle change is inevitable; it's just a matter of whether it's the circumstances or me. 

Wherever you lay your head tonight I encourage you to stop and try to see some of the good around you and treasure it. The spring flowers, the sun in the sky, your loved ones, or your memories of them; no matter how short. And if you find yourself in one of those days, or weeks, when crying is the only option, let it be so; "Be kind to yourself," as my wonderful mum has often said to me. I promise to pray for you.

I will pray that in the darkness of your day you see even the smallest glimmer of hope, a chink of light breaking through the thick black cloak around you. Whether it's the thoughtful words of a kind professional, an understanding friend or a few extra minutes sleep, I hope you will see more peace in today and more hope in tomorrow.

Late that night in GOSH I kissed my son's cheek and touched his soft skin before succumbing to sleep myself. I knew the morning would bring a rising sun to reveal another day. Another day full of potential pain and joy, or most likely, a mundane day brimming with the possibility of transformation.

Top 10 Advantages to having a Child with Severe and Complex Needs

All of my past and future blogs are now posted on my new website Born at the Right Time

1) Disabled Bays No more aimlessly driving around a crowded car-park with only the precious blue bays left vacant and out of bounds. You get the privilege of parking in Disabled bays and on double yellow lines.

2) Jumping the Queue Whether it's boarding a flight, ferry or euro-tunnel you get preferential treatment, and nothing matches jumping the queues at a theme park.

3) Carer gets in Free I pay for my child and then I get in free, whether it’s the cinema, zoo, theatre, swimming pool or many more. Caution: If you want to go and see the latest Saw movie, it might not work; if you’re a Disney/Pixar fan then you’re set.

4) Celebrity Status No more blending into the crowd; people watch you wherever you go. Admittedly it isn’t the “Wow, look who's over there” stare; it’s more an awkward “Awww look at that bedraggled women and terribly disabled child” look. Attention is attention though, let's not be fussy.

5) Endless Appointments Your importance cranks up to fever pitch. Everyone wants a piece of you as you go to endless therapy appointments. You even get the pleasure of having perfect strangers trample through your home checking you out; it’s a lot like Big Brother but without the sleep.

6) Extraordinary Parenting Other Mums boast about their exceptional ability to multi-task as cleaner, cook, accountant, teacher, chauffeur etc., but that isn’t a patch on the skills you will develop:

• Nurse - not just the magic kiss and apply a plaster type but the real McCoy who draws up dozens of medications daily, learns about PEGs, seizures, resuscitation and other hard-core stuff

• Occupational Therapist – making and adapting things, always seeing opportunities for development

• Physiotherapist – daily stretches, 24 hour positioning, handling and active therapy

• Speech and Language Therapist – interpreting noises and movements, creating a conversation practically on your own, learning about high-tech talking aids

• Wheelchair Technician – making adjustments and adaptions

• Visual Impairment Specialist – stimulating sight and promoting all the senses

• Dietician - not the petty "Eat your greens" or "Have you had enough to drink?" but more the calculating calories, introducing essential nutrients and multi-vitamins, tailoring feed rates and dose in relation to reflux, weight gain and tolerance

• Weight lifter – as your child grows in weight, but not ability, you learn to lift a 28kg child with the ease of any burly man at your local gym

The list goes on……..

7) Every Detail Counts You notice everything: every grimace, facial expression or hand gesture. Each movement speaks a thousand words and you learn to notice, treasure and interpret them all. You then appreciate the other children around you in a deeper, more profound way. How they grow, develop and learn so effortlessly, as though Spock has hit hyper-drive.

8) Learning to Live in the Moment Every day and every moment is precious. You learn
that life changes in a heartbeat, so you make choices based on what you believe is important: the people, the relationships and the memories. It’s less about yesterday or tomorrow but rather all about today.

9) Love beyond imagination When life pulls you into a thousand pieces, beyond what you thought was your natural limit, you realise you are held together by the thinnest of strands. On inspection you notice that this minute, delicate thread is woven by the most potent and powerful emotion imaginable, love; wordless and endless love.

10) Transformation is inevitable Immeasurably and forever, you, your views, your family and your life are changed. You see beauty where you once saw pain, you see joy through your tears and life becomes a gift, never to be taken for granted.

Please comment and let me know what are your Top 10 Advantages?

Snot, libraries and success

All of my past and future blogs are now posted on my new website Born at the Right Time.

Lately I've been wondering: what does success look like?

Take a trip to the library.
It would start with me wondering up the road on a bright sunny day, listening to the birds sing, feeling carefree and spring-like. I chat to both my boys about the fun we’ve already had, doing crafts and baking earlier in the day, each of us excited that our little jaunt will be the icing on our perfectly harmonious cake of a day.

As I push Son1 in his wheelchair he smiles and mumbles to me, while Jonah saunters along next to us joining in the chitchat. When we arrive at the library I sweep in breezily, grinning with pride, at the wealth of experiences I offer my delightful children.

Before long I’m sandwiched between my precious boys reading books like a professional children’s TV presenter. Son1 smiles with delight while Son2 points at the book and chips in about the unfolding story. The people in the library look at us, their faces glowing with respect and appreciation, recognising what an amazing mother I am. After a leisurely time of story-telling, we collect a mountain of books, that will barely touch our insatiable appetite for reading and leave both happy and content.

But really that only happens in my imagination.

What actually happens is that I've promised the boys I will take them to the library all day, but with only an hour until closing we have a rush to leave in time.

As we're about to go Son1 indicates he needs the loo and so a fifteen minute delay ensues, comprising of lifting, waiting, whining and wiping.  Meanwhile, I run around the house frantically looking for library books that a kindly automated voice has suggested need returning immediately. 

Thank goodness you don't get fines on kids library cards.

As I finally get round to strapping Son1 in his wheelchair I notice Son2 hasn't got either his shoes or coat on. Fraught and frustrated I begin yelling. Eventually I give up and put on Son2’s shoes whilst hissing through my teeth that he never listens to me. My face is reddening as I glance up and look into his big, blue apologetic eyes.

I stop; take a deep breath and apologise for shouting. We hug.

Eventually the three of us hurry out the door. Son2 runs off and I'm left steaming up the hill in hot pursuit, turning a leisurely walk into a frantic chase whilst pushing a wheelchair.

Together we burst through the door, instantly shattering the calm and peace of the library atmosphere and, with the timing of the London Philharmonic orchestra, Son1 instantly arches his back, turns his head and shouts at the top of his voice. I glance around hoping no one has heard, only to see people promptly looking away, awkward and suddenly very busy with their books. I can’t decide if they are disapproving or worried.

Despite my best efforts Son1 continues his protest. The volume and intensity would suggest he has inadvertently had his left leg chopped off, yet what he is actually communicating is that he wants to be read a book NOW.

Son1’s ability to wait could be measured on a postage stamp.

As I try to calm my still panting lungs, sweat pours from my face and I ignore the shrieking; much to the bewilderment of our fellow library-goers. They see an upset disabled, little boy while I see a child having a full blown temper tantrum.

The negotiations begin,

"Please stop shouting."

Screaming follows, including tears that stimulate more sympathetic glances from onlookers

"Listen to me, you can't talk to me while you are shouting. Do you want a book?" There is a hesitation in the howling and through tears and snot he replies

"Mmmmmm bbbb." (interpretation = yes please)

"Ok, now wait one second and I'll find a book...."

The bawling begins instantly, once again, as I rifle through books, hurriedly seeking ones that are suitable.

"Are you going to join us?" I hopefully implore Jonah, who in the meantime has settled down to read a book alone.

"No thanks, he's whining," comes the abrupt and honest response.

With no chairs available I kneel on the floor next to Son1’s wheelchair while the screeching and wailing continues to reverberate around the library.

"Do you want to read this book?"

In a flash, silence reigns and it feels as though even the walls of the library sigh with relief.

"If you want me to read you a book you need to be quiet and say please”

"Mmmmmmmm, bbbbbbb"

"Ok. One day there lived......"

As I begin, I wipe the secretions from around Son1’s face with my sleeve (being a prepared mum with tissues in her bag remains only an aspiration).

After just a couple of books I feel watched and wrung out.  No one in the library is celebrating my parenting. Son1 notices the end of the book, and as the last word leaves my lips he hurtles towards full throttle once more.  Immediately I offer to put a story on his iPod so that he can hear it through his wheelchair headrest. He concurs as I fumble about to start the one thing most guaranteed to settle and calm.

I strain myself off the floor, feeling older than my years. Tentatively approaching Son2 we share a couple of short books, when thundering groans begin again. I ignore it until I can't stand the stares anymore and, exhausted, I grab the first ten books I find and try to usher both boys out of the library.

Son1 kicks off, complaining we are leaving too early and these aren't the books he wants anyway. After a fully fledged western show down, I marginally win the duel of authority with my child and a compromise is met before I limp outside, wounded and beleaguered.

Rather than appreciating the sun on my face or the flowers on our journey, I simply long to be back at home, void of stares and expectations. Outside my imagination, I am less perfect and life is more chaotic.

It seems unreasonable expectations lead to a fate much worse than snotty sleeves and when I realise success can look messy and difficult, the more I see myself as successful.

Loving the skies I'm under

All of my past and future blogs are now posted on my new website Born at the Right Time.

In 1985 Marty McFly hit the big screen for the first time. Back to the Future was epic, with its DeLorean time travel machine, flux capacitor and crazy Doc screeching, "1.21 Gigawatts!". Marty finds himself in 1955 and has to get back to the future whilst ensuring his parents still fall in love.

The whole concept of the film pivots around 'What if?'

What if his mum falls for him instead of his dad and never makes it to the Enchantment Under the Sea Dance? What if they never kiss and Marty and his siblings never exist?

Everyday life is full of 'what ifs’. Most of them are inconsequential and decisions are made without a fanfare. At other times, however, what could have happened hangs above us like large black clouds changing the whole climate and weather system of our lives.

 

'What if she hadn't got on that plane?'

'What if he had left in the car ten minutes later?'

'What if I had gone to hospital the first time I noticed my baby not moving?'

One minute and one decision can lead to a whole stream of 'what ifs' that entice us down a road of expectation and assumption.

In the days and weeks after my son's MRI scan confirmed the dramatic and widespread damage to his brain, my mind and emotions were gripped with what could have been. If he had been born a day or two earlier would he have been born without complication, a fit and well baby?

When he was born it was as though the long film reel of the life I had been dreaming and anticipating was abruptly sheared by a pair of large scissors. Instead of my future being neatly rolled up just waiting to unfurl, the story of my life dangled precariously in the air. I simply couldn't see the future before me; nothing remained the same.

I had to relearn living with a new perspective.

Firstly I had to mourn. I grieved the baby I had hoped and prayed for. It is absolutely right to mourn the loss of a person, relationship or situation. It can take months, years or a lifetime of living with grief; often it leaves us changed.

The forecast of my life, however, began changing when I stopped dwelling on the alternate universe that only ever happened in my mind. I came to realise I had stopped mourning what had happened and was instead mourning what hadn't happened. I was mourning something that was never mine in the first place; something that only ever occurred in my imagination.

My husband’s perspective was very different; he asserted that there was never a world where our son wasn't born with severe brain damage. He reminded me that along with all of my brighter, more glossy, scenarios, there were just as many worse options.

It is only fairly recently that I could say both my son's were 'Born at the Right Time'. That doesn't mean what happened was 'right', nor does it mean it doesn't make me sad or at times is incredibly difficult, rather it means that I changed.

My perspective changed. 

I kind of see it a lot like prayer. I don't see prayer as me cajoling, haranguing or persuading God to make my life and world a better place. I see praying as me trying to hear and see what God is doing in the world around me, and joining in. It's about me becoming the hands, words and love of God with whoever and wherever I am.

I came to seeing it as 'right' because I allowed my perspective and view to come in line with my reality. I made a decision to trust God with not only the good in my life but the pain and mess also. 

What I found was, when I learnt to live in the reality of today, and not the expectations of my imagination, I had the potential to be healed.

There is a sign on the side of a building I pass on the drive to Great Ormond Street Hospital. It says,

 

"Sorry the lifestyle you ordered is currently out of stock."

When I realised the lifestyle I had ordered wasn't in stock I had to make a choice. I either sit in the shop moaned, groaned and stamped my feet, or I look around at the different, yet beautiful things in stock. I could learn to "Love the skies I'm under."* For me it has been a vital step in acceptance.

 *Mumford and Sons song "Hopeless Wanderer"