My Life As It Was Meant To Be: A Firefly Community post.

This post, on Firefly Community, goes some way, perhaps, to explaining why I found it relatively easy to decide to go ahead with a pregnancy in which I knew I had a 1-in-12 chance of having a baby with Down’s Syndrome; and why I was able to face his diagnosis with less fear than most:

http://community.fireflyfriends.com/blog/article/special-needs-parenting-my-life-as-it-was-meant-to-be

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CLOSE ENCOUNTERS IN PRIMARK.

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Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.

Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.

Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’

My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.

‘Has he got Down’s?’ she asked

‘Yes,’ I said firmly and looked up … into a pair of distinctively up-slanted eyes. ‘Just like me,’ she exclaimed, beaming.

We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.

When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.

Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.

AWARENESS WEEK #3

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Down’s Syndrome does not discriminate.
We are all born without prejudice. One thing I have noticed about very young children is that, presented with an unfamiliar person or situation, they seem to look for something recognisable to help them make sense of what they do not yet understand. Thus, if Freddie sees a man with white hair and beard then, no matter what the man’s skin colour, style of dress, or how many arms and legs he has, Freddie will interpret him as a ‘Grandad’. He focuses on the similarities and not the differences. Small children see the world through eyes unclouded by acquired prejudices, which is why, in thought and word, they so often cut right to the heart of the matter … and the person.
I hope Freddie will always retain this ability. What a pity so many of us lose it.

AWARENESS WEEK #2

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Around the world, each day, a number of babies will be born with Down’s Syndrome. If one of them is born to a friend or family member of yours, what should you say to them?

Congratulations. That’s what I’d recommend you say in the first instance. That’s what I wanted to hear. Just that. ‘Congratulations’ – ‘on the safe delivery of your baby’, ‘on the birth of your son/daughter’, ‘on your new family member’. in time it will become apparent what other support they need from you, for now one of the things they most need to know is that their child is accepted as a child. One of my relatives simply said my baby was beautiful (another relative piped up: ‘Of course he is, he’s one of us’. My friend’s husband, on first meeting Freddie, held out his arms saying: ‘I haven’t had a hold of him yet. Will he come to me?’ These were the interactions that were the most helpful to us at that time.

So, congratulate the new parents. If you take a gift, take exactly the same gift you would give any new baby — chances are it will be fine for them, too. And if you spot a family resemblance (and you probably will) say so.

But if you spot a resemblance to the milkman, or daddy’s best friend, maybe keep schtum about that!

With thanks to the Cheshire Down’s Syndrome Support Group for the photo at the beginning of this post.

OH, BROTHER …

‘Think what it’ll do to your children if you have a baby with Down’s.’

Those were my mother’s words when I got the results of my nuchal scan.
I think the following pictures tell you all you need to know about the relationship between Freddie and Big Sister (Big Brother is camera shy, but has become very adept at wiping noses and not reacting when Freddie jumps on him and licks his stubbly cheeks. Slowly.)
As for Granny — she thinks the sun shines out of his bum, which is just as well because his trousers are forever sliding down.

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A NON-RANDOM ACT OF KINDNESS

One day, soon after I bought Freddie home from hospital, I went to collect my daughter from school. I saw another new mum; she was relaxed and smiling, surrounded by a crowd of cooing admirers. Though we had been due at about the same time, her baby was weeks younger than Freddie, having been born bang on time and healthy, not premature and sick. I did not envy her ‘perfect’ baby, but I did envy her freedom from worry.

On the way home we popped into the corner shop to buy milk. As I was negotiating the narrow aisle with the pram a voice called out:

‘I’ve been looking out for you.’

I turned around to see a lady I knew vaguely by sight from the school, either she, or her sister (I was never sure which), was mum to a boy with Down’s who had been in my daughter’s nursery class.

‘I heard on the grapevine that you’d had a baby with Down’s,’ she said. ‘I didn’t know anyone else who’d got a child with it when I had my boy, and I just wanted to say this to you: the scary times — when they’re little and thy’re poorly — they do get better.’

She cooed over Freddie and we swapped stories, not the usual half-joyful-half-exhausted tales of birth, night-feeds and nappies, but of the moment we first realised, of sobbing into our Christmas dinners because our baby was sick and miles away in hospital. She told me how her son was growing up now that the ‘scary’ baby days were over, and explained that he wasn’t with her that day because he was away on a week-long school trip in the Lakes — the most ‘normal’ of activites for a lad his age.

So, thank you, Marina. Thank you from the bottom of my heart. I don’t need to tell you how much that conversation meant to me, you knew before you even spoke.