If only we knew…

Many people are given the odds of their baby having Down Syndrome before they are born or for some people it is a complete surprise and they have no idea until they have their beautiful bundle of joy in their arms. For those people it can feel like they have been hit by a tonne of bricks.

Hospitals can give information in a wrong or negative way and very few people already have experience of someone close to them having Down Syndrome. Imagine how different views would be if we could just see for a second in to our future.

If only we knew….

I wish we knew that even though it felt like everyone around us stopped supporting us, a whole new community of friends were waiting for us as soon as Rory was born. Rory has inspired us so much and our lives have changed so much for the better!

I thought I would ask the question, What do you wish you knew then? on the Facebook page Future of Downs ( A page for family of people with Down Syndrome) Here is what people said:

Donna – I’m glad I knew very little, at least about the potential problems, I’d have worried and for nothing. I wish I knew that having a child with Down Syndrome would make me and my family a part of the most positive community on the planet. I wish I’d known that babies with Down Syndrome give off some kind of wonderful,  intoxicating vibe that can turn tears in to smiles.

Sabrina – My little one is the heart of my family and changed us all for the better. The way we look at life, enjoy life and our family has grown and blossomed. I so wish I had known that our lives would be even more enriched after her birth and even though there are challenges, I can’t wait to wake up each day to her cheeky smile and cuddles.

Lisa –  While I was pregnant I dreamt of a beautiful musical child with a sense of humour. When I received her diagnosis on day four I thought I had to think again. I wish I’d known how wrong I was, she was there all the time.

Laura – I wouldn’t want to know anything about Down Syndrome as Harrison is just Harrison, he is loved, cherished and has a fun personality, he goes in to a room and he lights up the room with ease.

Kay – Lucas has a wicked sense of humour and a great way with words but then, so has my son-in-law, his dad.

Sonia – I wish I’d known it was not the terrifying condition the medical staff would have had us believe. I wish I had known that my son is exactly who he is meant to be, and we’re all better off for having him in our lives.

Victoria – I wish I had known that Down Syndrome isn’t a risk or anything to be scared off. I wish I hadn’t been scared of the unknown as the unknown has turned out to be amazing and beautiful. Down Syndrome is part of Ruby and I love her for it.

Jeni – I wish I’d known what an amazing community there is and how you gain a huge new family all around the world! How you can feel a huge feeling of pride, love, worry about people who you have never met and in some cases are not likely to meet.

Bronagh – I wish I knew there was nothing to be afraid of.

Hayley – I wish I’d known that everything was going to be alright. That we’d have strength we never dreamed of, but mostly little cause to use it.

Rachel –  I wish I’d have known that Down Syndrome does not describe who my daughter is. She’s beautiful and funny and brave and motivated and back then all I could think was but she has Down Syndrome. I don’t even think about it anymore.

Hazel – I wish I’d known she’d be much more alike than different.

Andrea – I wish I’d known Thomas would have a fantastic sense of humour and also that he would be able to play in the street with friends…just like my daughters do.

Mark – That every time I walk through the front door Jaxon would stop what he is doing and run over and give me the biggest hugs! Love him!

Corrine – I wish that I wasn’t frightened of everything and that his NG tube would come out after a year. He would be more like other children than different and what an amazing boy he would be.

Sharon – I wish I’d known everything would be alright and how much our son would bring our family and friends even closer together.

Bea – I wish I would have known that everything was going to take so much longer either because we pause to laugh so many times ( and low tone flops which makes us laugh more) and mostly because she has too many people who want to say hi when we are out and about!

Jane – When my Granddaughter, Summer was diagnosed I didn’t know what to expect. I wish I had known how limiting labels can be. She is 2 and a bit and clever, funny, affectionate and the most charismatic toddler you could wish to meet.

Steph – That all the limitations that I’d put on our Jossie girl were unnecessary. That the limitations were forged by my misunderstanding of what a diagnosis of Down Syndrome meant for Jossie girl’s life. That I need to raise Jossie the same way as my other children and to teach her to reach for the stars.

Kerry – My son, Louis is three now and he was a post-natal diagnosis. Like many parents, we weren’t treated kindly by the medical staff when diagnosed and yet our love for him never wavered. If there was one thing I wish I was told in those early moments it’s this: Hugs from my son are like melting butter: They are full-bodied, warm and generous. No matter the type of day I’m having, a hug from Louis soothes all hurts.

Steph – I have ‘loved’ all these comments because  I am a week and a day into the journey with my newly arrived 7 month old. I guess it’s a bit different, but like birth mums, I guess I am really interested to read what parents wish they knew and these comments give me such hope and excitement for the future.

And last but certainly not least…my mum wanted to have input in this post…

Jayne – What it showed me was how amazing all my other children are. Especially my eldest daughter who not only had just given birth to her own baby but had to take care of her other brothers and sister and all this while her baby brother was critically ill and we nearly lost him.      Thanks mum! Facebook-20170615-085031


Thank you everyone on Future of Downs that helped out with this blog post!







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