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"

Priceless

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

I have been known to occasionally watch day time TV classics such as Cash in the Attic or Flog it! My husband is is much more highbrow, and saves himself for the Antiques Road Show (what a rock and roll couple we are).

Both of these programmes examine items and place a value on them.

What are they worth?

The fun of the auction programme is that you then get to see what they are actually worth as the item is sold to the highest bidder. Sometimes people are sorely disappointed as well-loved family heir looms are sold cheaply with a brusque disregard for the priceless memories they contain.  On other days a couple of people in the auction room dearly want Lot number 228 and as a result it soars in cost and therefore value.

Becoming a mum has challenged my perception of value. 

my eldest son's body doesn't co-ordinate it's multitude of muscles to produce functional movement or mobility. His limp limbs often hang from his trunk without purpose or strength.

If a car only had one functioning wheel it wouldn't be considered a very good car, because its purpose is to move, and take people with it. Yet neither of my sons' value is tied up in what their bodies can, or cannot do.

Neither is my love for them tainted or heightened by their achievements or failures.  

To go back to the auction room metaphor, a chewed biro used to sign a Beatles record deal may fetch hundreds of pounds at a specialist auction, not because its materials are worth anything, but because people value the story and what it signifies.

Equally my son and his body becomes increasingly valuable and treasured as those that love and care for him recognise the spirit, person and story he holds. 

Value therefore isn’t just something that can be measured in logical terms according the qualities contained.

Value comes from us.

It comes from me and you, from how much we think something or someone is worth.

A year ago a piece of art work was unveiled at our local children's hospice.  Both of my boys designed and contributed clay pieces along with other children with life limiting conditions and their families. The sculptures central message was a Helen Keller quote,

 “The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart”.

This articulates the belief that all of the wondrous, mystical and greatest parts of our lives don’t fit into logic and can’t be satisfactorily explained by theory. They are felt and lived, experienced beyond our five senses. They may not be able to be pinned down or articulated, but they are no less real or life-sustaining then oxygen.

The fragility of son's life, and the likelihood that he will not reach adulthood, means we as a family strive to live in a way that shows what is important to us. The reality of our future could dampen our outlook and crush our spirit, and at times it has,  but today we aren't waiting for the future to inflict itself on us. Rather we are determined to live today with what we value being most vibrantly expressed.

This process often happens when a traumatic or life changing event takes places. We stop and take stock. We evaluate what we are doing and whether life is how we want it to look.

It would be great if we could re-evaluate our life without the tragedy.

So today I no longer see busyness as an aspiration. In the past I have strived to prove my worth by what do or I have achieved. Just the innocent question from my husband of, "What have you done today?" makes me sweat, as I instinctively try to justify myself and the 'work' I have undertaken.

How did I get so obsessed with telling others how busy, and therefore important I am?

Over recent months I have changed tack and begun to value rest. I value knitting and creating. I value space in life and sleep; and I recognise that my worth and that of others is not based on what I do.

The dozens of mums I know who don't go on the Internet and spill their guts about their lives, are no less inspirational as they diligently and silently work away loving and caring for their children.

I believe there is as much importance in my hanging up my family's laundry than publishing a book; it is me doing what I am created and called to do.

It is still a challenge though, as I strive to see my own weaknesses without feeling de-valued. I'm challenged to see and celebrate the achievements of others without it causing me to want to defend my own worth by chipping in my own accomplishments.

For me I believe this comes from knowing that I am carefully Created and immeasurably loved. It comes as I let my life reflect this truth because it isn't just something I believe with my head but my heart too.

Letting in the Light

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

"You have not walked in my footsteps, danced in my shoes, or lived in my world. Do not judge me, point your fingers at me, or become experts on my life. "                                          Kate Baker

I have a warm memory of dancing on my dad’s feet as a little girl. I would place my tiptoes on his shiny black shoes and he would sway, step and glide around the kitchen. Before long I would begin to giggle in expectation of what would happen next. Inevitably, he would take long exaggerated strides far too big for my short legs and I would be left gripping on to his hands with my toes desperately trying to seek out his feet below me. This is the closest I ever got to walking in someone’s footsteps and it is a feeble attempt.

This blog is all about showing the truth of my life. Not the glossy Facebook impression of a perfectly painted exterior and immaculate garden, but the reality when I haven’t cleaned the loo or made my bed.

So I ask you to stop reading if, in the words of Jack Nicholson,

“You can’t handle the truth”

Life for me involves getting up every couple of hours in the night to care for eldest son. It is impossible to tell if he gets disturbed because of pain, seizure, reflux or mild discomfort, and it isn’t likely to get better as he gets older. Through the day I draw up more than twenty syringes of medication to be administered eight times in a twenty-four hour period and I am required to lift his 27kg body more than a dozen times in a day. Add in the feeds via the tube in his stomach, and every hour there is something else that needs to be done. 

When the day is consumed by tasks and responsibilities there is little space of emotional reflection and perspective goes out the window. I shouldn’t, however, have to justify why it became too much, as for everyone breaking point comes at a different time.

The truth was it got to the stage that I was no longer coping. I managed to keep going but inside I was becoming increasing drained by physical and emotion fatigue.

Does that mean I failed to love or value my son? 

Of course not.

It is profoundly understood in our home that worth is not tied up in achievement. My youngest son, is not loved more because he achieves well at school and my eldest isn’t valued less for what he can’t do.  In the same way that value isn’t related to achievement, neither can the extent of my love be measured by my ability to care and carry on.

A diamond’s value is not diminished by the sweat, strife and struggle experienced by the miner excavating it; in fact they wouldn’t even bother if it wasn’t considered so precious and unique.

So why am I prepared to be so vulnerable and open to criticism?

Not long ago a local mother and her son, with special needs, were found dead in their car. It seems she had decided to take both their lives. I worry that our current state of fearing other people’s opinion and putting on a brave face creates isolation and desperation. I feel there may be benefit in others knowing what I have to face before stepping out of my door wearing a smile, and others may be comforted to know that they are not alone in their struggles.

So my advice to anyone who is struggling with holding it all together:

1.    Find someone you can trust and share with them the truth of your life and how you feel.

(Don’t do this on the internet – some people will not understand).

I have discovered there are two types of people in this world. There are those that think they understand but don’t and give advice anyway; and there are those that don’t understand and are prepared to listen. Seek out the latter. If there isn't anyone, write it down and, if you need to, burn it afterwards.

2.    Get help.

Vulnerability is hard and taking help because you can’t do it on your own isn’t easy. For me, it took shining a light onto my own weariness and grief before I could accept more help. Not coping is not the same as being a bad mum and doesn’t mean you love your kids less. The guilt of not being self-sufficient may still niggle but the impact of living beyond simply coping is incredible. Most importantly life begins to have the potential for whimsically dancing around the kitchen with your kids.

The response to my last blog was not what I expected. I have never been told what a great mum I am by so many people I love and respect. The best reaction by far came when both my older brothers immediately came to my defence. I felt as though I was back in school with my big bro’s rising up to protect me against the playground bully. I have savoured those feelings all week.

My prayer for this blog is that it may help others. As I shine a light into the dark areas of my life and thoughts it may help others who feel overstretched and misunderstood not feel so alone. I also hope that the people who love families with a severe and complex disability may have a greater insight into the world they live in, enabling them to love them better.

For me, no number of hits or comments on the blog, whether good or bad, will replace the real life I live and the people I'm blessed to share it with.