Sunday, 8 July 2012

Much Better Today

Feeling much happier
What a brilliant start to the day. To hear Felix through the baby monitor, not crying, but having a happy little chat to himself was the best beginning to any morning we've had in almost a week. When I went into his room to pick him up he had a beaming smile and although he still looked a little snotty, he looked just like our little Felix from a week ago. What a relief!

It was almost as if Felix wanted to make up for all the food he hasn't eaten in the past 5 days, just for breakfast this morning. He wolfed down a big bowl of porridge and yoghurt and then munched on some dry crackers. He drank a bit (still not as much as I would have liked), but it was a good start. His temperature went up a little bit in the middle of the day and he had a bit of a quiet moment, but apart from that he is so much better.

Chillin watching TV
When I was holding Felix in my arms yesterday, completely floppy and burning hot, it made me cry to look into his little face. Not tears for Felix; I know what he is sick with is just par for the course when you have a toddler, but tears for those I know who have had to hold their babies in their arms knowing they will never get better. Beautiful babies with Down Syndrome who were born with heart defects so serious, they were unable to be fixed. I thought of little Ryan (whose Mum is making a bucket list) who is the same age as Felix. The latest update is that he may only have a week left; in fact the other night his oxygen sats dropped so low the nurses quickly urged Ryan's Mum to pick him up in her arms because they thought it was time (she doesn't want him passing away in bed). Ryan is one of so many little soldiers with Down Syndrome who fight long and hard to stay with their families until they can't hang on any more. It doesn't get any easier each time I hear about another little one losing their fight for life. It's the hardest part of life within the Down Syndrome Community.

It is, however, a reminder to hold those we love close. It makes me cherish Felix that little bit more. He could so easily have been born with a heart defect that was inoperable, but we were the lucky ones. I never forget the Paediatrician in the Neo Natal Ward when Felix was born telling us, "You know that the name Felix means Lucky, don't you?"  It makes me more determined to celebrate every day of Felix's life. To celebrate the things he can do and to enjoy watching him change people's perceptions of Down Syndrome!! You should have seen the nurse's face at the hospital when I said he uses the potty... you could have knocked her over with a feather. Children with Down Syndrome can't toilet train early!?!?  Go Felix!

Daniel when he was the same age as Felix.
Now he's getting married :)

After a very ordinary week, we had some wonderful news a few nights ago. Our eldest son, Daniel, proposed to his beautiful girlfriend, Cate. Unfortunately, we were all too sick and had to cancel a trip we'd planned to go and meet Cate's parents and spend some time with them. We look forward to an exciting (and healthy) month ahead planning an engagement party and celebrating with them all then.


  1. R.I.P little ryan u were strong long enough go free now little man thoughts are with diane ,erik and children right now