Monday, 13 August 2012

No Apologies

Enjoying pushing the car around
I've had quite a few people question why Nathan and I were not upset when we received a pre-natal diagnosis of Down Syndrome with Felix. Most people have a period of shock, grief and a whole bundle of mixed emotions when they find out the baby they are pregnant with, or have just given birth to, has Down Syndrome. This is perfectly understandable. When you fall pregnant you expect to give birth to a baby with the same number of chromosomes as you and your partner. Your main concerns are whether or not you'll get much sleep, what colour to paint the nursery and whether you want to breast or bottle feed. To be told that the wriggling, beautiful little bundle growing in your belly isn't 'normal' (in the eyes of the medical profession) can be devastating. I totally understand that, and no one should feel guilty for those feelings.

Felix with his Special Needs Playgroup Teacher
For Nathan and I, things were a little bit different. We already had eight children between us when we met. Eight perfectly healthy, talented and beautiful children. We had made the decision not to have a child together because the other kids were older and independent and we were really happy with the way things were. We loved our kids and had a great life. Several years later, however, we changed our minds. We decided that we'd love just one more; the cherry on the top.

I was almost 39 years old when we decided to try for another baby. Nathan was only 31. We knew that there was a much higher chance that we would have a baby with Down Syndrome because of my age. In fact, we actually asked ourselves, "Are we prepared to have a child with Down Syndrome? Would that bother us?" Our answer was always that we would be happy with that. In some ways it's a little bit like we made a decision to adopt a child with Down Syndrome; except we didn't know it yet. We already prepared for the possibility even before it became a reality. When, at our 19 week scan the Radiologist said, "I think your baby has Down Syndrome", we really weren't surprised. In fact Nathan responded, "Is that all?" I'll never forget the perplexed look on the Radiologist's face.

Puzzle time
Another thing people have mentioned is that we are 'too positive' about Felix having Down Syndrome. We have been very lucky with Felix. We have not had to endure major health issues or life threatening situations with him since he was born. I can't imagine the heartache and exhaustion some parents of children with Down Syndrome have to deal with. Some of our kids have a multitude of different health issues and prolonged hospital stays. Way too many parents have to say goodbye and hold their children as they pass away. Some have watched them go through a great deal of pain and trauma. We are so blessed that Felix is so healthy. We were absolutely crushed when we were told that the fluid on his brain meant he may not survive until birth. We talked in depth with our Obstetrician about doing whatever it took to at least have a few minutes with Felix after he was born before he passed away. One of the reasons why we celebrate every day with him is because at one point we didn't even think we'd have one!

So much concentration
There are a couple of other reasons why I'm super positive when I talk about life with Felix. One is because I have already endured the loss of a child. I can't even describe the pain I felt when I lost my daughter, or the pain that still lives with me nearly eight years on. She was born asleep, so I never got to hear her cry or see her smile. I still spend time wondering what she would have been like if she was alive. To me, Felix is a miracle of life! Most foetuses with an extra chromosome will naturally miscarry. The body will reject that which isn't 'normal'. The fact that he is even alive shows that he was just meant to be! He fills my heart with so much joy, I can't help but be positive. His birth didn't take away the pain of losing Eden, but it made me appreciate the fragility of life so much more than ever before. The fact that he had Down Syndrome didn't matter. He was alive and he was perfect to me.

I can't help but celebrate this life!
Secondly, I am positive because he has changed our lives. We were in a great place before Felix came into our lives, but we are in an even better one now. He has educated us about acceptance and a love so deep it's unexplainable. We have watched our kids become educators to others and have observed them as they have stood up for people with disabilities (even deleting people from Facebook for derogatory comments). Their friends ask to come over to our house because they want to play with Felix. It's awesome! Felix has educated eight siblings who are now educating others. The acceptance is spreading and it's beautiful to see.

I'm not going to say that I never have negative thoughts. I am a fiercely protective parent and worry about Felix's future. The thought that he will be teased or treated with disrespect when I'm not around to stand up for him kills me sometimes. The thought that the fluid in his brain could get to a dangerous level again petrifies me when I think about it.  I often discuss my worries and concerns with other parents of children with Down Syndrome. But, at the end of the day, I am trying not to dwell on the negatives and get distressed thinking about all the possibilities in the future. Just for now, I'm going to enjoy every day. I'm going to celebrate the happiness and joy which Felix brings into our lives. For now he is a very healthy little boy who is progressing beautifully. If some think I'm being too be it. I have never laughed so much or felt such a unity within our family... it is beautiful and I'm loving every second!


  1. I really love this post Kylie, and feel like adding in an 'Amen sister!' ;) My sentiments exactly. It occurred to me recently that people who don't know us particularly well probably talk about us in hushed tones, about this terrible thing that's happened to us - when, to me, that couldn't be any furtherer from the truth. I love that Nicholas brings so much joy to our lives, and I know that Felix does the same for your family. Felix is so gorgeous and I love hearing you gush about him! Love your positivity - you shouldn't ever have to apologise for that. Annie x

    1. Thank you so much Annie :) I definitely love to shout from the rooftops how proud I am of Felix. I can't help but smile when he's around! Your Nicholas is just delicious!! It's beautiful to read your blog and hear of your love for him. Keep it's beautiful!!! x x x