Setting The Tone

By Liz Arriens

“You remember when you had the blood test for Down’s syndrome at 12 weeks, that was just a guide; it looks like your baby is exhibiting characteristics of Down’s syndrome. There are worse things.”

This was how we learned Coraline had Down’s syndrome, two hours after she was born, from a paediatrician and her colleague. We had been moved to a side room after Coraline’s birth, as the team at her birth said they wanted a paediatrician to come and see her. I remember feeling conscious that we were receiving this definitive news whilst another couple with their new baby were next to us, behind a paper curtain. I felt self-conscious that they were hearing our news too.

Time stood still as her words clung to the air. I felt a real difficulty in processing what I had just heard with my reality up until those words which was elation, savouring of sensations and marvelling at our new baby. Tears hit me. I think that shock hit me because this was unexpected, and I had a fear of the unknown.

We were moved to our own room. The paediatrician came back when it was just me and two nurses, as Kevin had gone to ring all our family and friends with the news of Coraline’s birth, as he felt they’d be wondering what was happening.

I recall her saying to me, as if an addendum to her comments earlier, “you realise your baby will be in and out of hospital for the rest of her life, and she could have problems with her ears, her eyes, her heart and her thyroid.” I began to hyperventilate, which I never have before, as the rain fell against the windows, though it was a summer’s day. Kevin returned and asked what was happening, and led me in the breathing we had learned in antenatal classes to stimulate the parasympathetic nervous system. He later found the paediatrician and asked her calmly not to talk to me without him present.

This is how we found out. But this is not what this piece is about. It’s about Kevin’s reaction, and about the reaction of our family and friends. Those phone calls Kevin made were him telling our family and friends Coraline most likely had Down’s syndrome, “and all I want to hear is Congratulations”. As my Dad said, “he’s set the tone for us all”.

It’s about the exceptional care we had for the next week when we stayed in the hospital from all the staff there. To the extent that, for Coraline’s first birthday, we chose to go back to the hospital to see everyone again. It is, of course about my reaction, and how that fear and overwhelm turned into overwhelming love.

Coraline was in the Neonatal Intensive Care Unit (NICU) for her first 48 hours for tests and a transfusion and Kevin had immediately gone to be with her after the calls, checking that I was fine first, whilst I recovered from the planned caesarean (Coraline was breech, and they had been unable to turn her, hence the caesarean). I remember him saying, effervescing with pride and excitement about her, that my mind would change as soon as I came in there and held her. He was right, and he knew that he would be right!

I know how fear became love for me: by going to see Coraline in the NICU. I had gone so far into my thinking mind when Coraline was born: fears, suppositions, circular thoughts. When I went to the NICU and held Coraline she brought me back into awareness and into feeling and I said, “I love her”. Well, she was so sweet. That’s all I needed to know. All I needed to do was to be still, be in the now and connect with my feelings. Not the feelings of fear created by the mind; but deep, instinctive feelings.

I listened to a podcast recently which said ask yourself a question and then write down, “what do I think about this?” and also “what do I feel about this”. I found the “feeling” response was so much truer to me.

“When you really accept the now and are happy in the now, the world rises up to meet you (I think Oprah said something like this in a different podcast with Eckhart Tolle)”. As I mentioned, this piece is about that. About the next paediatrician we met who was amazing in his smile, his warmth, his philosophy and wisdom. It’s about my pregnancy yoga teacher coming to congratulate us in the NICU where Coraline spent her first week. About her obstetrician who came to see us and did the same. About the love from everyone who looked after us in our first week. And the midwife we met on our first day back home who said, “I know a boy called Oliver with Down’s syndrome and at a party everybody wants a dance with Oliver”. She could not have said anything truer. Everybody has revelled in dancing with Coraline since she was born. Everybody loves her. It is so true. There’s an energy which surrounds her. This piece is about setting the tone. Fully accept the now and love will come to you from all angles.

After I stepped out of those tears and into the now after a couple of days, I wrote these sentences to announce Coraline’s arrival on social media:

“Here is Coraline.  Life already felt beautiful, but now it feels filled with beauty wherever we look. Coraline very likely has Down’s syndrome and she has a few heart problems which may require surgery in a few months. We are so proud of her and she is mesmerising – we simply couldn’t be any happier”. 

We received 444 comments from our friends in response! All of them overjoyed at our new arrival.

I want to share ten here that we loved, and all were like this:

  1. Oh Liz she is gorgeous. Well done, well done! I LOVE the name Coraline. Huge hugs xxx
  2. Congratulations Kev, all the best in the coming weeks, it’s an amazing journey, wishing you all the happiness in the world xx
  3. Ahhhh Congratulations to you both!!!! Absolute BEAUTY! She’s amazing!
  4. She is perfect, welcome to the family Coraline! You look so happy…all of you! xoxoxox
  5. Wow – sooo happy to read this post! Such great news! Congrats to you all!
  6. Congrats! Delighted for ya…Children make life amazing. She is beautiful in every way!
  7. Beautiful baby girl, beautiful name and a beautiful family. And well done Liz, you’re looking as fresh as a daisy. Lots and lots of love to you all xx
  8. I love her so much already…she’s a beauty, can’t wait to meet her!
  9. Your baby is soooo adorable! Congratulations!!!!!
  10. Liz, that is one of the most uplifting Facebook updates I’ve ever read. Coraline is a gorgeous name for a beautiful little girl.

I will leave the last words with Kevin:

“Coraline is 19 months old now and it is hard to picture life before she was born. We have reached a level of love, happiness and richness of life that you can never prepare for. And that is something that transcends any perceived disability or imperfection. That is the very definition of being a parent I believe. And that is a wondrous thing.” 

Coraline is a wondrous girl. If you’d like a dance with her, you’ve found the perfect partner.

You can follow Liz’s Blog Coraline and Us, which she began writing a few days after Coraline was born, here: