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?