Thursday, 14 June 2012


28 weeks gestation and his
little life was in question
Watching Felix play today I couldn't help but be amazed at how far he has come over the past 20 months.

We spent weeks and weeks reading books and information on the internet while waiting for Felix to be born. I was aware that breastfeeding might be a problem so I asked the Down Syndrome Society to send me information so it might go more smoothly. We prepared ourselves for possible health issues common in babies with Down Syndrome, but also the possibility of severe disability (or even death) from his hydrocephalus (fluid on the brain). We read up on Early Intervention and Physio we could do at home so we could start immediately. We even looked into what car we would need to buy if he was going to require a wheelchair due to the damage caused by the fluid. It's a wonder our brains didn't go into overload!

With his little feeding tube
And then he was born, and it was beautiful. There wasn't the anxiety we had felt during the pregnancy because for a baby with Down Syndrome, he was incredibly healthy. The hydrocephalus didn't appear to have done any damage either. Apart from being tube fed for a few days while he developed the strength to be able to breastfeed, things went perfectly and much to our amazement, we were discharged on day four.

From then on, Felix has gone from strength to strength. There were Physio appointments and hearing tests; visits to the Paediatrician and Occupational therapy and Speech Pathology (yes, even a newborn has speech therapy). There were people calling to let us know about this service and that service which would be beneficial for him. Sometimes it got tiring for us, but Felix coped with everything beautifully.

Hearing test
From the time he was about 4 weeks old, I would look into his little face as he stared back with so much awareness, and wonder when we would catch a glimpse of his first smile. We had to wait twice as long as the other kids, but it was so worth the wait.... a smile which lit up his eyes as well. It was perfect.

He showed us his determination for the first time when, at 11 months old, he started what can only be described as 'freestyle' crawling. He would move his arms like you would if you were swimming freestyle and he would push with his legs until he wormed himself forward an inch at a time to reach whatever it was he wanted. Shortly after his first birthday, he learned to sit up on his own for the first time.

Using the touch screen
We have had to learn patience, but it hasn't been a chore. It has actually been therapeutic for us to realise that savouring every moment is the only way to live! I know I've talked about enjoying the small things before, but I can't emphasise enough how important it is. Having Felix has made us better parents to our other kids. Instead of telling them to hurry up because we need to cook dinner or do something else, we really enjoy listening to them more and paying attention to the interactions they have with us and each other. Felix's birth has changed so much and I can honestly say I have never felt happier or more content with our whole family.

Today Nathan and I stopped what we were doing and quietly watched Felix while he was sitting on the floor looking at some of his books. We bought him some touch-and-feel books to encourage his sensory play and he was really studying them. He turned each page carefully and with great concentration rubbed his fingers over the different textures on each page before he turned to the next one. Occasionally he would sign something to himself in relation to the picture he was looking at. I could have watched him all day. Later he sat for quite a while drawing with his finger on my touch-screen phone (An Android App called 'Toddler Lock'). He drew for a while and when he had enough of that picture, he cleared the screen by sliding his finger from the top to the bottom and then started again. I can't believe how quickly he learns how to do some things. He really is an incredible little person.

I really wanted to share this photo. I found it yesterday when I was looking through some old Felix pics. This is Felix with a friend's daughter who also has Down Syndrome. The way she held Felix and looked at him was so heart warming. Felix looked at her as if to say, "You're just like me"    If Felix grows up to be even half as gorgeous as this beautiful little girl, I will be extremely happy. She is delightful and so uninhibited...a real joy!

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