We remember first hearing that diagnosis, and the fears and uncertainty it brought. And we wish we knew then what we know now.
We want to help those following in our footsteps. Parenting any child is – at the same time – the most challenging and rewarding thing you can do. That’s the same for children who have that extra chromosome – okay, so maybe with a few extra challenges thrown in! We firmly believe that what you are born with is only part of the story – how you are raised is the bigger part.
So we’ve put together this book – a mixture of quotes from the parents who are part of our support group, and some of our favourite photographs. A book written by parents, for parents, about what they wish they’d known when they first heard that diagnosis.
Our book is funded by our group so it is free for as many new parents as we can in our charity’s area through our newborn support projects. Please contact us on [email protected] if you are in our area and haven’t yet had a copy.
If you aren’t from our area, you can buy your very own copy through eBay for just £4.50 inc P+P by clicking here. Please feel free to contact us on the email address above if you have any difficulty using eBay, or if you are from another support group and are interested in getting more copies to pass on – we’re happy to share!
Our first readers have loved our book – here’s some of what they said:
“It is brilliant, I had tears in my eyes reading the quotes, it’s very uplifting”, “I wish I’d have had something like this when I had my daughter”, “It’s lovely to hear so many positives”, “The pictures are beautiful, the words even more so. I would have loved to have this when my son was born, the positivity and love pours from every page, new parents will feel the reassurance we are sending and it will make a difference”.
Here’s some of what our families told us…
That I wasn’t alone…
“When sitting in the hospital awaiting formal diagnosis I wish I’d known that I’m not alone – countless others have been through what I was going through and that its normal to feel scared. It does get better and the initial scariness melts right away. You may not believe it at the time, but a few months down the road you’ll look back like I did and agree with me, I promise.”
To enjoy my baby…
“A baby with DS has the same basic needs as any other baby – to be loved, cared for and cherished. Enjoy every moment.”
Forget the stereotypes…
“How much she’d look like me – she’s nothing like the stereotype I imagined.”
Buy some tissues (and lots of ice-cream)…
“Don’t worry too much of the future – live for the present and enjoy your child, they are going to amaze you more than you can imagine. And you will always be crying. But you will cry more happy tears and tears of totally amazement and joy than tears of sadness. Buy shares in ketchup, ice-cream and sausages – Those that are told our kids won’t be like typical kids have never met a hormonal teenage boy with DS!”
Your feelings are normal…
“I wish I’d known that it’s okay to feel devastated when that diagnosis is made, that it’s normal to go through the stages of grief for the “perfect” baby you have lost. But, although no one would wish for a child to be born with the challenges that they will encounter, it’s certainly not as bad as you imagine. The positiv
es slowly start to outweigh the negatives and, before you know it, everything is okay after all.”
They’ll change the world – one person at a time…
“I think our children will literally go through their whole lives changing people’s preconceptions about Down’s syndrome – for family members; for the people they get to know well; and the people they meet on the street. Changing the world one person at a time – how amazing is that?!
You’ve just got a new family…
“I wish I’d have known that I was to meet so many amazing people who are now like our extended family – we are a little community!”
That DS doesn’t define our kids…
“That the one little extra chromosome is only a tiny part of her.”