Freddie’s Story

 

 

When our first child was born in September 2005, we had no idea that he was going to have Down's syndrome.  We’d opted out of the triple test, but had a nuchal scan, numerous ultra sounds and a 4D scan done.  With us both being 27, we never thought that something like DS would affect us. We used to talk about the ‘delivery room shock’ but now we prefer to talk about Freddie’s arrival as more of a surprise!

 

We were fortunate that Freddie was medically very well when he was born though we both spent about 24 hours being very upset and allowing our minds to race in to the future in to ‘what if…’ scenarios.  We’re not embarrassed to say that we wondered ‘why us?’ and felt extremely envious of all the other mums around with their new, perfect little arrivals. 

 

But it didn’t take us very long at all to fall madly in love with our bundle and he was immediately loved and accepted by all our family and friends.  We found it helpful to tell people straight away, along with news of his arrival so that the big deal of breaking the diagnosis was done.

 

So the following weeks and months were like a bit of a rollercoaster really in terms of emotion though I am sure it would have been a bit like this anyway, with the arrival of your first child.  Some days we’d think we can’t do this….others we’d be so positive and happy it was untrue!  Both Tom and myself coped by finding out tonnes and tonnes of information on the syndrome straight away, we figured we needed to know now what we might be in for and we’re glad we got clued up in the beginning. 

 

We met another family with a 2 year old girl with DS and were in awe of how well she was doing and how they were just like any other family!  We found support groups and met other families which is the biggest source of comfort and information you will ever receive in our opinion.  No one understands like other Mums and Dads, they know exactly what you are feeling and thinking.

 

Freddie did extremely well in terms of development and everything else until he was 5 months old and developed a very rare and serious form of epilepsy known as infantile spasms.  This was another shock and a very tough and worrying time though it did seem to put the DS in to perspective.

 

We felt all of a sudden that we could deal with that, we just wanted him to get better, stop having seizures and regain his development!  We were told, like most other things, kids with DS are more likely to get this illness, though it was still very rare.   This was one of the most bleak and worrying times in either of our lives, but with the right consultant and the correct mixture of medicine, we have managed to get it under control and he is now back to his bubbly self and developing wonderfully!  Freddie is now two and a big brother to Stanley who he enjoys terrorising like any other big brother would. 

 

If having a child with DS has changed our lives in any way, we both feel it has enriched it, opened our eyes and taught us to appreciate the more simple things in life and be happy for every little thing that happens and every moment we have together as a family.  It has also taught us not to sit back and accept things, but to challenge medical professionals and opinions, and fight for whatever you feel is right and is best for your child. 

 

We are completely devoted to ensuring Freddie reaches his full potential, is happy and accepted in to society.  We are here to challenge all the old fashioned opinions and myths that still are around regarding DS and to help other mums, dads and families who are in a similar position.

 

Freddie is the light of our lives, and that of most of our family too!  Each small developmental step is a cause for major celebration, pictures and texts to those who know him!  We have met so many great families through setting up Ups ‘n’ Downs.  We meet every couple of weeks, our babies play, we chat and are just generally good friends. 

 

Freddie has an extraordinary love for life and approaches every challenge with boundless enthusiasm.  Every time he falls, he gets up, laughs and tries again.   He is an inspiration to us all. 

 

 

Freddie Rees

 

THE RIGHT WORDS

I’d like you to choose carefully, the words you might say
When you see my baby in the general day-to-day.

 

He is a darling  baby boy who happens to have Down's syndrome
The result of a small chemical accident and an extra chromosome.

 

But don’t call him ‘Downs Baby’, ‘A Downs’ or ‘Downs Boy’,
It makes him sound like a different breed, an animal or stuffed toy!

 

And please don’t make judgements like a book by its cover,
Like all other children, he’s very different from any other,
Don’t offer some generalised statement that’s outdated and might go…
‘He’ll be so loving and cuddly’.
How on earth do you know?!

 

It might not be easy to say words that don’t offend,
So just be honest and considerate so together we can mend
Society’s choice of words – because we need to emphasise that
Your words do make a difference to the way we feel inside.

 

So let’s get it right.
He is a baby WITH Downs.
Not a ‘Downs baby’.
Remember, other way round!!

 

He’s a human, like you, with just a little bit more
And if we were all the same, wouldn’t life be a bore?

 

Do please share this poem with others that you know
So down the road to ‘thoughtful language’, we all can humbly go.

 

And if you‘re a professional or involved in any way,
You’re the forefront of our campaign.
Get it right.

WATCH WHAT YOU SAY!

Adele Rees 2006