What parents of children with Down syndrome really want you to hear.

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I wanted to put something together to give new parents of a child with Down syndrome some hope. I googled frantically when River was diagnosed and all I really wanted to read was that everything was going to be ok! And it is going to be ok, honestly. Being told that your child has Down syndrome is terrifying and you will be feeling all sorts of things, from devastation, to sadness, to mourning, to fear and onwards.

Sometimes you just need to hear that life is going to go on and one day you will feel happy again. Hopefully this article will help new parents, any parent who is facing a tough moment or just anyone in society who may not have realistic views about what having a child with Down syndrome is really like. And who better to hear the truth from than people who are actually living it, parents of children who have Down syndrome that have been though the exact same feelings.

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So I asked a large group of parents of children with Down syndrome this question.

If you could go back to the moment you were told your baby had Down syndrome, what would you say to yourself?

Their answers are what they want you to know. I hope this helps give you some hope and maybe even a smile.

“Feel whatever you are feeling and feel no guilt for it. This is all a process and you need to feel it all in order to come out the other side. But know this. One day you will smile again, laugh again and your life is going to be beautiful. You may not be able to see it now but one day you will feel that you wouldn’t change a thing. Your baby is amazing, you are amazing and I can’t even begin to tell you how they will enrich your life. One day you will look back and wonder why you ever felt sad at all – I promise x x x ” – Hayley, River’s Mum, I am River.

“Don’t waste the next few years grieving and worrying. It’s going to be ok , more than ok. It’s going to be amazing!”

“You’re starting a wonderful journey and are going to meet some amazing people”
“Live in the moment. Your child will teach you that!”

“Love that baby like you would any other child; they’re going to be the light of your life”

“Doctors cannot predict the future – this baby will massively exceed their expectations and will be the light of your life. There is a lot of fun and laughter ahead. Stay positive. I would also tell myself ‘this is not your fault’; I spent far too long blaming myself when I should have been enjoying my son”

“Welcome to the best thing you never even knew you wanted”

“Do not feel sad for your daughter, her life will be filled to the brim with joy, hope and laughter”

“You may not be taking the journey you were expecting, but it’s going to be exciting and fulfilling and you won’t want to be anywhere else”

“Your heart will literally stretch for all that extra love!”

“It’s only Down syndrome, no need to panic!”

:Have faith in your daughter. She will overcome every obstacle in front of her, just watch her go!”

“Your baby is so much more than a diagnosis. Enjoy this special time, because in the blink of an eye this time will only be a memory”

“Do not Google Down syndrome! Stay positive, you daughter will develop into a beautiful little girl who will walk, talk, eat and light up every day!”

“Your baby will teach you so many things and you will become a better person because of it. Your baby will surpass all expectations and you will be proud to be their Mum on a daily basis”

“You  won’t want to change your child for the world, but you will want to change the world for them”

“Don’t be sad. It’s a different path, but there will be lots of giggles and you will meet some amazing people””You will have lot’s of regrets in life, your baby will never be one of them”

“You will be happy again, very happy. Like no happiness you have ever known before”

“Don’t be scared, your baby is amazing and your life just got a whole lot better!”

“Enjoy every moment and don’t over think everything. It’s going to be ok”

“Don’t see the syndrome. See the baby and the person, for they are yours”

“This is not the worst thing in the world. Your baby will be happy and bring you so much joy and love”

“This is the beginning of a new and beautiful journey”

“The doctors can only tell you so much; they’re not living this life and can’t begin to realize how amazing it really is. Listen to your heart and love that baby, it’s all going to be ok”

“You will be fine; you will be the mum you always wanted to be with an extra shot of kick ass. Your baby will be the baby you always wanted with an extra chromosome of awesome. How can that be a bad thing?”

“The lows are low, but the highs make everything worth it as they’re beyond high”

“Life is not over, it’s just beginning. And don’t fear the loss of ‘normal’. You’ll still run, dance, swim, play and laugh with your child, just like any other. Love your life!”

“This is a huge gift. You have been given a baby that will transform you and your family. You will now understand and experience the power of unconditional love. You will be amazed!”

“One day you will look back and wonder what all the tears were for, your life is going to be filled with happy!”

“Don’t compare your child to others; your baby will do things in their own time without any rush. Enjoy the journey”

“Don’t focus on the negatives, only the positives. There will be many of those. Be proud of your baby, they are unique and incredible”

“Everything is going to be ok. Enjoy the ride, because this child is going to show you more strength and resilience than you ever knew existed. And don’t be afraid to accept help”

“Don’t grieve, you haven’t lost, you have gained! Buckle up girl, this ride is completely unknown and frightening, and you need to find your own way. But you will love it, gain from it and cherish it”.

“Down syndrome will not change your life. You will still go back to work, and all the extra pennies will still be spent on day trips and unnecessary toys”

“Every day will be an amazing adventure”

“One day you will look back and wonder what all the tears were for. Your life and your child’s life is going to be amazing, one day soon you will realize that”

These are all quotes from parents who have a child with Down syndrome, and have faced the initial pain, sadness and fear. Life is not easy, life is never perfect, but life can be amazing with Down syndrome playing a part in it. Listen to these parents, listen to me, we are living this life and now know how wonderful it really is. These are all photos sent to me from families who want to show you their happiness. They are happy!

One day, you will be to.

From Hayley, Rivers Mum and this army of warrior parents!

Motherhood The Real Deal
3 Little Buttons
Cuddle Fairy

Lucy At Home

33 thoughts on “What parents of children with Down syndrome really want you to hear.

  1. Jo U says:

    This article is simply beautiful!
    If this doesn’t make worried parents feel more confident, I don’t know what would! So much love on one page!

    Like

  2. Lucy At Home says:

    This post should be printed out to every parent as they receive the diagnosis! I don’t have any experience with Down Syndrome, but I do know what it is like to get a distressing, life-altering diagnosis for your child, and I wholeheartedly agree with the sentiments here – you need to allow yourself to grieve, it won’t be as bad as you think it is, and actually it is a pretty amazing experience with highs like no other! #dreamteam

    Liked by 1 person

  3. Ali says:

    Oh my goodness this is just so beautifully done. What an inspiration you all are and your beautiful children. When we were going to adopt I struggled to find any positive stories of adoption. I try to keep my posts light and helpful and this is what you are doing. Can’t imagine how anyone would feel in the beginning but this must be so reassuring that for so many families there is clearly so much light and love and joy in your lives because of your wonderful children. Thank your for writing such an importations and moving post which I will share #dreamteam

    Like

    • Hayley - I am River says:

      Honestly putting this together was amazing, I just loved knowing that there are so many families out there loving their lives even though many believe that’s not possible. At the end of the day a diagnosis can’t tell you who your child is meant to be. Thanks for commenting and I’m really happy you enjoyed it x x

      Like

  4. Joana at Mind The Mummy says:

    Wonderful read! as the mother of a recently diagnosed child with autism I felt every word and emotion expressed on here. Simply uplifting and fabulous to see so much hope condensed in one article. Hope is our motor and our nourishment and dwelling on statistics and stories of doom and gloom will do nothing but prevent us from living our lives, in the moment, and to enjoy our own special journeys. Much love to you and all who took part in this article xxx. #dreamteam

    Like

    • Hayley - I am River says:

      Thanks so much for commenting Joana, I completely agree with you. Fear and worry can stop us enjoying a really amazing life. A different life maybe, but who decided different was so bad?! Love to you and I hope you and your family are doing well x

      Like

  5. Rhyming with Wine says:

    I absolutely love this and I think you have together created a hugely empowering and uplifting resource for other parents, who may be about to travel the same path, but are not yet aware of just how magical and filled with promise that journey will be. Beautiful photos and fantastic quotes. Thanks for linking to #DreamTeam x

    Like

  6. Lucy At Home says:

    Just popping back again from BlogCrush but this really is one of those posts that sticks in your head. I love it so much because it offers such hope to parents who are floundering and fearing the worst. I am so glad you compiled this.

    And congratulations because someone loved this post so much, they added it to the BlogCrush linky! Feel free to collect your “I’ve been featured” blog badge 🙂 #blogcrush

    Like

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