Saturday, 23 March 2013

Dad, when did I first have Down's syndrome?

“Dad, when did I first have Down’s syndrome?”
There are some events, some moments, some days you will always remember. Your wedding day, the birth of a child, the death of a loved one. Perhaps England winning the cup, the 9/11 attacks, your child’s first day at school, a special birthday, being told your child has a disability. Whatever the reason, there are those times in all our lives. Some of them we cherish and long to cling on to, thinking of them often, replaying them in our minds; others we despise and long to let go of, but can’t; the hurt, the shock, the anger, disappointment, the loss too real, the pain too raw.
Well last night’s conversation with Emily was one of those moments. A memorable occasion I will never forget and I’m sure in years to come I will look back with a smile, mixed with a tinge of sadness. I’m not sure when I expected this conversation to be but it wasn’t now.
This may come as a surprise to anyone with younger children but as the months and years go by you just get on with being a parent, without so much emphasis on Down’s syndrome. Of course there are the obvious challenges that come with having a child with a disability – health, education, respite, vulnerability and other day to day needs but in many ways our other children have their own individual needs also. So you get that busy doing life, your focus is on the person not the disability (just as it should be). Down's syndrome takes a back seat.
Then along comes a bolt from the blue. A question that suddenly stops you in your tracks. It's as though the earth stops turning on its axis. We had been watching Born to be different and when one child was introduced as having Down’s syndrome, Emily said “I’ve got Down’s syndrome”. We’ve had previous discussions so we knew Emily was aware of Down’s syndrome and that it was something she knew she “had” and that other friends also had Down's syndrome, like her boyfriend Jono.
Then as Emily was getting ready for bed, she said,“Dad, when did I first have Down’s syndrome?” – I couldn’t immediately think of an answer I wanted to say out loud so, trying to buy myself a few precious seconds I asked Emily to repeat the question, which she did so I knew it was something she wanted to talk about. So we sat down on her bed and we chatted. What did I say? Well, I had no time to consult the book of Perfect Answers for Parents (if only there was one!) – in fact, on second thoughts, if there was one I would throw it away and write my own because all our children are individuals, unique– so there’s no perfect answer – only honest conversation between parent and child.
Well Emily listened to my stuttering. I told her she didn't catch it, it's not an illness but that she had it from birth - I even gave her the science – telling her she was special as she got an extra chromosome– one more than any of the others in our family. She liked that as she is just as competitive as her elder sister Laura and likes to think she wins. So she won! She got the extra chromosome and that means she deals with things differently to some of us. She finds it more difficult to do certain things like catching a bus on her own, crossing a road, counting money etc. But then she finds other things easier than the rest of us –forgiving wrongs, loving unconditionally, giving a hug when she sees someone is down. I told her that just as she learns from us, we learn from her. In fact, I've said before, I believe Emily teaches me far more than I could teach her.
Emily listened, she asked me to clarify when she didn’t understand my stumbling words, she nodded and made me feel like I knew what I was talking about (she is very generous like that!).
It was a beautiful moment. But then I wonder how I would feel if I kept hearing words about me and I didn’t know what it meant; didn’t fully understand. And that’s why there’s a tinge of sadness. This conversation brings back fully into focus the difficulties which Emily copes with day in day out. I feel my heart swell when I consider how much she has triumphed over since she first received that special extra chromosome.
She’s a champion, an overcomer and my inspiration.

Saturday, 9 March 2013

Emily's song

When you’re told that your baby has Down’s syndrome it can be a devastating blow. It can come as a shock; it can come as an earthquake shaking our world to the core. The perfect baby we might have expected, we are told is imperfect.

Of course, with time, you come to realise that having a child with Down’s syndrome is an enormous privilege. Being a parent of any child is an enormous privilege.

But I’m sure all of us who have heard those words, “your child has Down’s syndrome”, or indeed any other disability, have dealt with the emotion in very different ways. And that’s fine. Some may cry, that’s natural and expected, after all it is a shock and tears can be a great release. I cried. But then I’m a bit of a big girl’s blouse. I cry at anything. Don’t come with me to the cinema, it doesn’t matter what I go to see, I’ll end up with soggy popcorn!

Others may shout, others may get angry – that’s ok. The important thing is that emotions are not bottled up, that there is a release, because then we can begin the healing process. For me a way of getting my emotion out has always been to write things down, whether it’s a song or a poem. I find it very cathartic. I know many other parents do the same.

I recently came across a song I wrote shortly after Emily was born. It’s by no means a classic, I’m no Gary Barlow or Bruce Springsteen, but it’s my record of what I felt at the time. It’s a backward glance at my life 20 years ago so I thought I would share it with you.

Emily's Song

Emily, I’ll never forget the first time I saw you
Emily, it meant so much the first time I held you
A new life in you and a changed life for me
Right at that moment no-one could see
Just how much our lives would change

Emily, the doctor said that you had Down’s syndrome
We couldn’t see what the future held after we’d taken you home
A new life in you and a changed life for me
So many questions, just how could it be?
That you came to us – had you chosen us?
A meeting of angels in heaven above
Decided on you to bring down God’s love
They loaned you to us so together we’d be
Stronger in love and charity

Emily, it’s a pleasure to know you, you bring so much joy
Now I can see, there’s a plan behind the birth of every girl and boy
A new life in you and a changed life for me
Right at this moment I’m so proud to be
A guide to you, but you’re the light in me

A meeting of angels in heaven above
Decided on you to bring down God’s love
They loaned you to us so together we’d be
Stronger in love and charity

A meeting of angels decided on you
To bring down the message we now know so true
That we’ve got to stop taking and learn how to give
And only then can we start to live

Ó   Paul Critchlow 1992