Featured by Positive About Down Syndrome

Positive About Down Syndrome is an excellent website of parents’ stories, for parents, and parents-to-be. It’s brilliant in its simplicity as it’s just the stories. The stories are a mix of parents learning antenatally and postnatally that their baby has Down Syndrome. There is also a Facebook page and we were delighted to be featured on it on 28 October 2018. This was the text:

“We learned within a couple of hours of Coraline’s birth that she most likely had Down’s Syndrome. My abiding memory, and that of the hospital staff, is of my partner Kevin’s attitude and happiness at the birth of his new daughter. I remember him racing around the hospital corridors between her and me. I was recovering after a planned Caesarean (as Coraline had been breech, and they could not turn her). We stayed in hospital for a week after she was born.

Kevin called our family and let them know that there was a likelihood Coraline had Down’s Syndrome and the possibility of a congenital heart defect. “All I want to hear is Congratulations on the birth of your baby! She’s our beautiful little girl and we love her” he said. My Dad later said, “he’s set the tone for us all”.

Fast forward a year later to now as I write this. Coraline is fourteen months old. Kevin says to me all the time, “I love her so much”, “aren’t we lucky?” and we both say to each other how amazing her little personality is. My neighbour has fallen in love with her and asked to look after her on a Monday day and on a Thursday morning, simply because she loves her. She says she looks at videos of Coraline in the evenings! I think this is the effect Coraline has on people. I can honestly say that in this year since Coraline has been born, I have grown the most I’ve ever grown and I’ve discovered a love as deep as it is wide; for Coraline and my life. I have met more incredible people, and received more messages of joy and love, than ever before.

Rewind to the day she was born though. For me it was tears. A deep rebounding shock, such as I have never felt. Incomprehension I think at the way my world was not going to be what I thought it was going to be. I struggled with the notion that I would not have the picture I held, but what I have learned this past year is that, if you think about it, the picture I held is here. The picture I held was of a beautiful baby, who I love, who loves me, and of a gorgeous, cosy family life. We have it all. And more. So much more. There is a depth to my being which I would never have accessed. There is an empathy and an appreciation for others’ lives and considerations which would not have taken root in my being otherwise. Life is rich.

I write a Blog about Coraline called Coraline and Us. I began it when she was two days old as it was quite simply instinct to write it. I recently wrote a post called “Trust in Life” and that’s actually one of the Values which underpins my Blog. So, if I could say anything to you, I would say “trust in life”. I derive great joy from writing the blog which is really to create understanding and also just to show how happy we are. I say that because we are really, really happy! That’s what I was looking to read when I was in hospital that first week. My Blog was recently shortlisted for the “Fresh Voice” Award in the BritMums Brilliance in Blogging Awards, and I am so thrilled about that.

When Coraline was born we emailed friends in Australia who had a one year old daughter with Down’s Syndrome. They immediately emailed back and told us to buy the book, “Down's Upside, a positive view of Down's syndrome,” by Eva Snoijink. They said to buy it as it’s quite simply a book of beautiful pictures. They were so right with this. It’s a bit expensive, but it’s the best book I ever bought. Just like when taking a photograph, it’s all about what you choose to focus on.

Ah, if I could tell you about this year? About all the amazing cards and gifts we received for Coraline, so much so that we have literally bought her about one outfit ourselves. About all our friends who love seeing her. About how she was a flower girl at our wedding in July this year. She sleeps through the night and has done since she was about five weeks old. She also began rolling at about that time. I remember our Consultant Paediatrician laughing when she did it saying, “I hadn’t believed you when you said it!” I’ve blogged a lot about him as he is the most incredible energy and positive man, and his warmth and smile have been instrumental in our journey with Coraline. I absolutely can’t wait for appointments with him. We have so many other professionals too who have enriched our lives.

Coraline was diagnosed with two holes in the heart at birth and a leaking valve (A.V.S.D.) and we were told she would need surgery in the first three months of her life. However, she has done really well, and so they are waiting until she is bigger for the operation. We had to keep her well for nine months, as her Cardiology team advised us not to let her get ill. But if I look back on this, I see such a happy first year. It was a little different for us. We had to check with friends if they were well before we saw them, and we couldn’t go to any baby groups for those first nine months. But, as I say, it’s all about what you focus on. We just focused on the immense love and happiness we feel with Coraline day-to-day. Also, you choose the energy you put out there, and that’s what comes back to you. As I say, the considerations we have for her health-wise, and our path with her, makes us deeper as human beings.

Mum Liz would be delighted for you to share their story along with others www.positiveaboutdownsyndrome.co.uk”