Coraline and Us – Our Family’s Down’s Syndrome Journey

Meet Liz Arriens-Troy, super mum and author of Coraline & Us Who talks to us about finding inspiration in her amazing daughter Coraline who has Down’s syndrome and the life lessons she has learned.

My name is Liz, and there’s nothing I love more than swimming in the outdoors. I am married to the effervescent, hilarious, Kevin, and we have a captivating five-year-old daughter called Coraline. I love the beach and Kevin loves snowboarding in the mountains. I am an introvert, and he is an extrovert.

Coraline was diagnosed at birth with Down’s syndrome and two holes in the heart, for which she had open heart surgery at fifteen months old. One year ago, we moved from Surrey to Topsham, Devon, fulfilling our dream of moving to live near the sea. Coraline attends the preschool at the local school and will start in reception there this September. 

HOW HAS LIFE CHANGED SINCE BECOMING A PARENT?

The way we look at the world has been turned on its head and that’s something we hadn’t predicted. We are forced to look at our patterns of thinking and to check if they are serving us.

We have entered deeply into a world where we follow our intuition. We realise that being a parent means us totally embracing both the easy days and the challenging days. We realise that the experience comes us a whole and we just go with it on both types of day.

Coraline has just turned five. She is not yet fully walking, and she isn’t speaking yet. She is doing 20-30 steps independently which is amazing to see. Coraline has quite a few sensory considerations. She understands half a dozen words like “walk” or “school” if we say those words on their own, but she does not know the concepts e.g., of a holiday or a birthday or Christmas or what we are saying generally. She knows what she loves: musical books and toys, TV and food. 

Down’s syndrome is characterised by a developmental delay in all areas such as walking and talking. Coraline has low muscle tone and hypermobile joints which means she is always working harder for example to sit up or walk, as her legs feel wobbly to her. She doesn’t get as much input from her limbs as to where they are in space due to her low muscle tone. We have a lot of different therapies for her, so we keep track of a lot of appointments. We learn a lot from her therapists.

Life has also changed in that Coraline has led Kevin and I to our purpose, through following our passions! Our lives have angled in a whole new direction, opened wide through Coraline. That isn’t something we were expecting.

I write a blog about the life lessons we have learned through Coraline about how to live life fully and joyfully. I am also writing a book for new parents and carers of children with Down’s syndrome.

Kevin began his own business in February 2020.  This is something he’s always dreamed of doing. It is a handmade organic soap and skincare business inspired by Coraline called Coraline Organic Skincare, which is specifically for people with dry and sensitive skin, which Coraline has. We now have a shop in Topsham which we opened in November 2021. Kevin does all the product formulations and makes all the products himself. He’s passionate about using the best quality ingredients, and loves helping people with the skincare. Kevin’s background has led directly to him being in a position to do this. He was a chef for 17 years, and worked in Sales Manager roles within the food industry, gaining a real insight into how businesses are run.

DID YOU KNOW BEFORE THE ARRIVAL OF CORALINE THAT SHE HAD DOWN’S SYNDROME?

We didn’t. We had all the usual scans and tests whilst I was pregnant and the probability that she would have Down’s syndrome came up as low. 

HOW DID CORALINE’S DIAGNOSIS MAKE YOU FEEL?

I was in shock, and I was in tears when they told us a couple of hours after she was born in 2017. Kevin is more used to thinking on the spot and adapting to unexpected events, which he says comes from his years as a chef in the kitchen. He took the new reality on board straight away and was very positive in his calls to family and friends.

In terms of how I felt: confused and overwhelmed.

DID YOU RECEIVE ANY SUPPORT?

Oh yes, absolutely, we were immediately put in touch with local charities run by parents of children with Down’s syndrome. 

We also had so much support and positive input from family and friends. Friends put me in touch with people they knew who had children with Down’s syndrome and I had some striking phone calls with these people during Coraline’s first months. I remember one of them saying to me of her daughter, “All good things come through her door. The niceness of human nature that is there has come back because of her”. That was quite a thing to hear when Coraline was a month old.

The other things we noticed then, and notice now, is the feeling of “hands appearing”. The people who we need show up in our lives, just when we need them, and guide us on our way.

WHAT’S THE BEST THING ABOUT BEING CORALINE’S MUM?

A feeling of love that is unconditional, and beyond any feeling of love I can describe. She has taught me to enter into a purity of emotion.

WHAT’S THE MOST CHALLENGING THING ABOUT BEING CORALINE’S MUM?

The paperwork and sometimes having to be assertive to stand by my gut instinct, and by what I know is right for her. I prefer to appease by nature. For example, I had to stand up in order to get her therapies in place after we moved as I knew legally that they should have been in place, but they were not for five months. I found it very hard but it’s all lessons for me. Someone once said to me that she would bring me, “lessons, lessons, lessons.”

WHAT MADE YOU START YOUR BLOG?

It comes back to the gut instinct which is now firmly what I follow. I think I didn’t need to know “why”, I just had to follow my instinct as it was so strong. At the time, when we were still in hospital, when she was two days old, I just felt I had an opportunity to share with our family and friends all we were about to learn. I also knew we would learn from them too. 

WHAT’S NEXT?

Publishing my book! It’s taken me many detours in terms of focus or belief, but I am now sitting down daily to write it. I am visualising it up on our shop’s shelves, and in the hands of new parents and carers of children with Down’s syndrome.

ANY ADVICE FOR NEW MUMS?

Firstly, Congratulations! I would then just listen. That’s so important. I would love to hear their whole story about how their baby arrived and how their day-to-day is. 

Kev always says to me, “Wherever you are at is OK. Allow any, and all, emotions that you feel”. I would also say, “Hold one thing in your mind. Trust. Trust that your child is exactly who they are meant to be and that you are exactly who, and where, you are meant to be.”

ANY ADVICE FOR PARENTS ABOUT TO WELCOME A BABY WITH DOWN’S SYNDROME INTO THEIR LIVES?

I’d say what the midwife said to us when we brought Coraline home from the hospital after a week. I said to the midwife, “But we don’t know anything about Down’s syndrome” and she replied, “You don’t need to. You just need to know your baby. All that will come”.

FINALLY – WHAT’S THE BIGGEST LESSON YOU WANT TO TEACH CORALINE?

To be herself, because when you are yourself you shine and everyone around you feels it. It’s the biggest lesson she’s teaching us too.

 

 

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