Tuesday, December 26, 2006

A Year with Charlie

So I've spent a year with this gorgeous boy now and what has he taught me?

Firstly the capacity to love is infinite! I could never imagine loving anything or anyone more than Paul and I love our children, or each other.

Secondly he has redefined friendship for me; The friends I seem to have had a lifetime have proved they will be friends for life. I love and value them more than ever before.
Some friends I haven't had for so long have proved they are worth crossing the globe for! Most friends and especially Charlie's Godparents have simply 'been there', - quiet asides to Paul and I when it has been necessary, cuddles for Charlie and the girls, small things that ultimately mean everything.
I have also realised throughout the course of the year that people I had previously considered friends are actually just colleagues and that that's ok. We all have our own lives to lead and we all keep those who are the most important closest. In some ways this has been the most important lesson of the year. It allows me to spend time with those who actually make the most difference because I'm not so divided and I realise that I still care about and respect everyone else anyway. In almost every case, despite spending less time with people, I think no less of them than I ever did.

Thirdly family are, as they always were, fabulous! I wouldn't have thought it would be possible to become closer to my siblings as I have always loved them so dearly. Charlie has also changed my view on that! I spend less time with them out of necessity but value them more than ever and thank God for them almost daily, they are one of my greatest blessings! The Grandparents of my gorgeous children are as loved as they ever were but mostly, infinately more respected. They allow Paul and I 'private time' when we realise that as hard as it is to comprehend, we have a love, a friendship and a bond that exists beyond our children and is undoubtedly my greatest gift in life. There are some family members that Charlie seems to have forged more of a bond with and for this I'm also very grateful. I enjoy spending time with them far more than I ever thought possible before and I realise that ideas we have formulated over many years can be proved wrong and foolish in an instant.

Finally I have realised that there are some people who despite the opportunities and crossroads they are presented with, will never, ever change and I must allow them that. At the same time I don't need to agree with them and never see that as likely - that is also ok, because in all Charlie has taught me as I said initially, that the capacity to love is infinate. Those closest to me especially my gorgeous girls, my wonderful husband and of course the legend that is Charlie I have come to realise are all that is important in life. The most important gift Charlie has bestowed is that I hold no ill feeling towards anyone. Its probably the first thing he taught me! Many years ago I read that the last words Anne Frank wrote in her diary were "people are good." I remembered being astounded at the time that someone in her incomprehendable circumstances could think that, after all she had witnessed. I know nothing of her heartache and trauma but have realised in a year of adversity that strangers are kind, friends and family are 'soul food' and yes, basically people are good!

Charlie in one year you've been quite a teacher!

Thursday, November 23, 2006

A Month On...

I doubt I'll ever be sorry I started this. It has brought unexpected kindnesses from the most unexpected of people.
Charlie is doing so well. This month he has begun to sit up. He does not have control for long, but he does have control! (a little like me!)
After a really nasty chest infection, he is finally able to return to hydro-therapy. The session brings ear to ear smiles from start to finish. It introduces me to those in 'similar boats'. They treat me with a kindness and sensitivity I have only come to expect from closest friends and family. It also re-aquaints me with the professionals who care more about the families they work with than their professional title - they undoubtedly have a greater awareness of the difficulties of my situation than all but the very closest of my own work colleagues.
It is therefore probably greater therapy for me than for Charlie!
Every parent regardless of their child's ability should experience a session like this. It is unadulterated happiness both for mother and child and although I do not regret for a second my opportunity to partake, it's a little sad that it takes situations like mine before this service is offered. It should be obligatory.
"Look at your child!...Look at that smile...Do you appreciate how honoured you are to share in that glee!"
I do!

View this video montage created at One True Media
My Three Babies

Thursday, November 02, 2006


Zebra crossings remind me of labour pains. I’ve often thought that if life were more poetic, it would have been a crossroad; so much more metaphoric! But as it was, it was a zebra crossing. Ironic really as I was about to discover that life really isn’t black and white.

I was thirty-seven weeks pregnant with my third child when we had the customary dash to hospital. Staff on Maternity had told us to come in, immediate family had been notified and I was feeling slightly foolish as there was not as much pain involved as I remembered, so I admit to being less than convinced that baby was truly on the way.

We pulled up behind traffic at a zebra crossing and waited…and waited…and waited. Cars ahead of us eventually began three point turns, moving off in the direction we had come from. As my husband, Paul contemplated doing the same, (if he could only put aside his curiosity), I suddenly felt a quickening and intensifying of the sensations I’d had since the early hours and realisation dawned that this was in fact the real deal. The sharp intake of breath was enough to let Paul know and he started leaning out of the driver’s side window, trying to get a handle on exactly what was going on with this traffic. By now there were only a few cars ahead and just as I heard the distant wail of a siren, Paul glanced sideways and said quietly “I think there’s been an accident.” He could see what looked like an elderly lady laying at the roadside - her shopping trolley on its side, contents spilling out. Knowing I had a long way to go yet I told Paul to go and see if he could help.

After approaching another concerned bystander, Paul wandered back to the car explaining everything was in hand. The nearing siren was a precautionary ambulance called because of the lady’s age and frailty, but she was apparently lucid and not in too much pain. Having reasserted our willingness to help, Paul had conceded we were superfluous, and uncomfortably explained that he’d better be on his way as his wife was in the car…in labour! The traffic suddenly parted before my eyes and the kindly passerby waved us through. We passed the ambulance within a minute, just as another contraction kicked in.

Travelling that route since, approaching the zebra crossing has often taken me back to that moment. I always wonder what happened to that poor lady and I always reflect that during our concern for her we were blissfully unaware of the imminent, harrowing hours we were facing.

Very soon afterwards a feeling of complete elation spread through me as I heard the gently-spoken anaesthetist refer to my new arrival as ’he’. I spent a few very special moments gazing at this little miracle and contemplating all of life’s possibilities. Too soon, I realized how eerily quiet the room had become, I noticed the radio had been turned down and finally I watched as the colour drained from Paul’s face. At first he talked only to himself, clenching his fists, eyes darting round the professionals in the room, back to me, back to the baby, back to the floor and all the while softly muttering “no..no..oh no.”

We already had two very beautiful and very special girls - twins, who had undoubtedly enriched and complicated our lives beyond all expectation. This new son had been completely unplanned but gradually intensely celebrated as an unexpected opportunity to experience “normal” parenthood. Claudia and Caitlin, our precious girls were profoundly epileptic, severely delayed and most recently diagnosed as autistic. They’d had a traumatic and complicated birth and the whole experience was one we’d never planned to repeat. Watching Paul’s anxiety engulf him that day, I genuinely believed that what he was experiencing was paranoia. After all, lightening couldn’t strike in the same place twice.

Seeking reassurance from the increasingly uncomfortable midwife quickly confirmed it could. “Excuse me,” I said tentatively, “My husband is worried. There’s nothing wrong with our baby is there?” Paul thinks he might have Down Syndrome.” I was looking only for confirmation: That my elated feeling was justified; That Paul’s apprehension was misplaced. The first few words of her response were all I heard.
“We understand your concern. A specialist is on the way.”

I put my hands over my face and felt absolutely nothing. Nothing except a tremor that seemed to start somewhere round my hips and strangely within seconds had taken hold completely. Fierce but completely painless shudders wracked my whole body. I was gently held down whilst the doctor continued to stitch me. Stitch the wound from which he had just plucked this mysterious, damaged little boy.

In my head and with both hands still planted firmly over my face, I sang to myself. I had seen in the dim and distant past a film in which a woman had given birth in difficult circumstances. The soundtrack to the birth was the hauntingly beautiful ballad by Kate Bush ‘This Woman’s Work’
As I silently sang, the lyrics took on a new poignancy. I think at some point in everyone’s life they remember a song that could have been written for the moment they are living.

Pray God you can cope…I should be crying but I just
can’t let it show, I should be hoping but I can’t stop
thinking…Give me these moments back…give me that
little kiss… Oh darling, make it
go away.”

I remember vividly thinking that if my life were a film, this would be that point I would decide it was too miserable and switch off. Nothing good could happen now.

How wrong can you be?

Although the next few days were unrelentingly bleak, bringing solemn-faced and tearful visitors and consultants with unnecessary confirmations, as I spent more and more time with my new baby, I noticed silver linings were already beginning to crack through the clouds.
Love will find a way.

Over the coming months, I shed many tears, full of anxiety at what I thought I had lost. The child I expected, the Charlie I had anticipated, I actually grieved for. Worse, I felt real guilt in this grief, that I wasn't satisfied with the undemanding and intensely lovable baby I had instead. And Charlie really was lovable! In retrospect that was one aspect I never struggled with. I adored him! He simply wasn't who I had expected.
Then again, I had never expected the complete sense of calm that welled up inside me just sharing time with him and holding him close. Hours of complete tranquility spent silently holding his gaze. The urge to love and protect him come what may was overwhelming. The truth was, in giving birth to Charlie, I had unwittingly unleashed a force so powerful in its gentleness, so all consuming in its simplicity and vulnerability that within his first few months of life, he had begun healing us all in places we had never realised we were broken.

We slowly began to feel that we weren't an inferior or substandard family, we were just different. We hadn't missed out on the exciting journeys our friends were taking as parents, we were just on an adjacent path. Our children, as they grew, were not more demanding than others - they just had different demands! Charlie's quiet and constantly cheerful demeanor challenged us to finally accept our position. And you know what we realised? As a family we're actually pretty great! I'm certainly not aware of one where there's more love.
My thoughts at the time of his birth now feel like they belong to someone else. In a way they do, the uninitiated me! Do I still view Charlie as 'damaged'? - Not at all!
But 'mysterious'? - Certainly. I love the mystery. I love the initiation. I love Charlie!

The tears then, inevitably slowed and when they did fall they were often tears of real happiness. Still every now and then it's pangs of guilt that suddenly fell me. It took me too long to actively celebrate my boy! So partly to make amends and partly because I thought it would be cathartic I decided to write to Charlie. What resulted is somewhere between poetry and prose. It was written from the heart. I know he understands none of it. I don't know if he ever will. To this day though each word remains true. In sharing it here I put all my negative feelings, my anger, my worries and my heartache over all three of my children into a big bubble and blow them away!

For Charlie

At first I yearned for the child I wanted you to be,
Never understanding how much beauty there was in the child you were.
I cried for who you were not,
...the mother I wasn't to be,
...the father your daddy would never now become.

Slowly I recognised;
the wonder of who you were becoming,
the joy of an adoring glance from a precious son,
the smile of pride on your daddy's face.

I remember clearly the moment I knew I loved you.
It is not a cliche to say love conquers all.
I remember feeling the precious eyes of a child who loved
and I have never been more complete than I was in that moment.

I remember deperately wanting a son I could be proud of,
I remember being foolishly disappointed.
I still feel pride and disappointment sharply;
Pride that is fierce and intense and still doesn't capture a fraction of how special you are,
and disappointment in myself - that I didn't see it the second I met you.

No mother has ever wanted a son more than I wanted you,
And no mummy has ever loved her little boy more or been more proud of him
than I am of my beautiful Charlie.

with mummy's admiration, protection and love, always.