From Shock To Despair To Hope In Seven Short Years

Chloe was born in 2001 after a normal pregnancy. Our first child.

All the way through we thought she was a boy and had already named her Calvin. We were a little surprised when a girl came out.

The next seven years were full of surprises.

The birth was a beautiful event. I was lucky enough to be near a birth centre, with midwives on hand. I viewed pregnancy and birth as a normal event, not an illness, and so was glad that midwives rather than doctors provided our care.

It was a six and a half hour labour, quite short and drug-free.

Chloe’s cord was wrapped around her neck, but it was deftly unwound and with a little oxygen administered immediately she let out her first cry.

She sounded like a tiny kitten and alarm bells went off straight away for the midwives, but I was too euphoric to feel anything but a mighty sense of achievement and fascination at this new, precious creature.

Cradling her in my arms, I watched as the placenta was gently birthed and the cord clamped once it had stopped pulsating. It was perfect.

I sent my support people home for some rest (my Mum and my husband), and settled down to gaze at my newborn.

Shortly afterwards a paediatrician came and inspected her. It was the first time we had been physically separated and she cried unbearably. I remember thinking, “There’s nothing wrong with her lungs anyway!”, but why was I thinking there was something wrong in the first place?

The paediatrician turned to me, and with no one else nearby but the lactation consultant, he announced, “Your baby is abnormal. I don’t know how yet, but it could be Edward’s Syndrome. We’ll run some tests. Goodbye.”

And with my world rapidly collapsing around me, he swept out.

I was treated enormously better by most of the other practitioners involved in Chloe’s first years, I’m glad to say. That first encounter, however, was the most devastating experience of my life.

It turned out that Chloe has Cri Du Chat Syndrome (CDCS), a partial deletion of the short arm of chromosome five.

This is the beginning of the story of how I came to love her first seven years.

“Be Positive”

Great advice, but what exactly are you supposed to do? The answer is different for every human being on this planet.

Positivity to me means having as much knowledge and control of a situation as possible. It can mean quite the opposite for others, so the first step towards positivity for anyone is to work out what they are comfortable living with.

Let’s deal with the negatives first:

1. Finding out your child is disabled is like a bereavement. It is okay to grieve. Give yourself time and space and don’t feel guilty if you are disappointed by your child. This is a necessary step towards healing. You will come to love her in other ways.

2. You will see other children the same age as your child grow and develop differently. It hurts. It takes time for you to accept your child for who she is and to understand her unique potential. They say that babies are born without an instruction manual – even more so for the disabled baby. You will learn many things and though it sounds like a cliché, you will become a stronger, more resilient person if you keep it in your mind that this is an important lesson.

3. A disabled child has many battles ahead and you will often be tired beyond anything you’ve ever experienced before. But you will find your peace and your balance if you seek it.

4. People outside your family, and most of the time, even the people closest to you, will never really know and love your disabled child in the way that you do. Some may even react with ignorance, fear or anger. This is hurtful, but please remember that their behaviour is a product of something negative in their universe, and doesn’t have to become something negative in yours.

The eternal question is, “What do I do?”.

The answer for me was...

Research: The Parents' Arsenal

If your child has a diagnosis, there are

• articles,

• chatrooms,

• books

• websites

• e-books

• printed books

• support groups

and all manner of information products available online and offline to work through.

Having a reliable computer and a good internet connection has been such a help to me.

Parents with special needs children ought to have computer equipment given to them automatically, or at least be able to write those purchases off against tax (amongst many other special purchases). They are the tools of our trade. But more on parents’ rights a little later.

I read thousands of pages about my girl’s condition. Some of it was very hard to confront at first, especially when there were pictures of other cri du chat kids.

I couldn’t see their beauty yet, as I was still steeped in grief and disbelief.

A wonderful place to start, to begin to perceive the beauty, not just inner, of your child, is a website called Positive Exposure.

This website was founded by high-fashion photographer Rick Guidotti “to challenge the stigma associated with difference by celebrating the beauty and richness of human diversity”.

There are hundreds of stunning photographs of children and adults with many kinds of physical differences.

Many of the children are albino, a condition I knew virtually nothing about until I saw this site and felt compelled to learn more.

Not only did I learn about Chloe’s condition, but about so many other people in this world who are different or highly dependent.

Through the work of people like Rick, and through the stories of ordinary parents who have shared their experiences with me, I feel like I have joined a community of exceptional people.

I have always tried to avoid over-compensating for Chloe’s disability by imagining that she has special powers or that her coming to me as my child has some spiritual significance. But I can’t help seeking the affirmative about all this.

I’ve sought the constructive people, the enriching experiences, the magic of being alive on this earth right now as Chloe’s mother.

And you know what? By looking, I found it.

I’m sure I could find, in equal measure, the negative people, the damaging experiences, the horror of being alive on this earth right now as Chloe’s mother.

But where’s the fun in that?

So your research is not just about gathering information about your child’s condition, it is about seeking the good, the great, and above all, seeking what makes sense to you.

Even if your child doesn’t have a diagnosis, but you have been told that he or she is going to have some form of developmental delay, there is so much you can learn.

These pages are about balancing the pressures of bringing up a disabled child with an appreciation of the valuable gift this journey can give you.