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. 

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"

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.

A Road Less Travelled

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

It's amazing to think that 2004 was 10 years ago. 

In that year Tony Blair was Prime minister, the Olympics were held in Athens and the actor Christopher Reeve died. It was also the year that I set off with my husband for a slightly delayed 'gap year'. First travelling to Uganda, to work as a doctor and nurse (sticking with the stereotypes) in a small clinic in the capital Kampala.  

Then, we next worked in Gisborne General for a couple of months, before travelling around New Zealand. As we loaded our backpacks for the journey home we heard news of the devastating Indian Ocean earthquake that rocked Indonesia and the world. The ensuing Tsunami was of incomprehensible magnitude, killing over a quarter of a million people.

On the final leg of our trip we experienced some of the sights, smells and tastes of Australia and Thailand. When we alighted the plane in London, we were greeted by UK officials checking that no one on board had been in Thailand on Boxing Day. It was a stark reminder that while we were exploring and enjoying life, for many the world had changed immeasurably and forever.

Within a year our own lives experienced a tectonic shift with catastrophic consequences. On 12th October 2005 our son was born limp and not breathing, leaving him with severe brain damage (Cerebral Palsy). 

My heart broke, my emotions raged, my God seemed silent and my world began shrinking. 

Eight years later I continue to feel as though I live in the aftermath of that day, with his growing body showing the life long consequences of being starved of oxygen.

 My life is unrecognisable from the dreams I once had, with the challenges of each day greater than I ever imagined. 

At times I feel I am held in the shadow lands of another world unknown to many; with my precious, beautiful, little boy and the relentless, persistent burden of loving and caring for him.

I am on a journey and road most people are sheltered from and oblivious to. It is as though I now travel through life carrying a permanent backpack.

Some people don’t notice my burden, while others look the other way by saying,

              “He’s such a happy boy; isn’t he lovely?” 

Then there are friends who think they know exactly what my rucksack contains and what it is like to carry it. 

But they are mistaken. 

This backpack is unique to me and mothers like me.   

The weight of this backpack I carry changes. 

When I go to the park it is loaded down with the disappointment of not getting to enjoy the slide; when at the beach it’s sadness at missing out on the ice cream. 

When holding my son I’m weighed down with the grief of knowing he cannot see my face or hold me in return. 

My backpack contains the pain of my own missed dreams and never hearing my son say 'Mum'.

During days with nieces and nephews it digs into my shoulders and throbs with the ache of fantasies about what could have been. 

On days out I'm crippled by places that are inaccessible and facilities that are inadequate. Every day my rucksack is plagued with sleep deprivation, the heavy labour of lifting and doing everything and anything my son requires.

With time and training I carry my backpack a little more easily. I regularly examine its contents and make sure there isn't anything in there I can’t remove. Yet there are days it is heavy and cumbersome, making life feel broken and shackled. 

But I have hope; hope from the beauty of a mosaic, created out of shattered tiles.

I hope that as I piece together the shattered elements of my life and dreams they can be fashioned into something more elegant and beautiful than their broken parts.