In a year our little Ted has come so far. 

While it can be hard not to measure the distance between where his healthy peers are and where he is, it is easy to measure the distance he has come on his own journey  instead. 

On this day a year ago this was us –

We were preparing to hand our precious blue tinged boy over for the final stage in his three part surgical palliation. There were so many unknowns and the biggest question was whether our brave soldier would survive. 

Not only did Teddy survive, but he has thrived. Since his Fontan surgery a year ago he has gained 2 kilos, his blue lips are permanently pink, he turned five AND he started primary school. That special little heart of his can go the distance. 

At one point during my pregnancy we were told Ted would have a poor quality of life, he would not be mainstream schooled and later we were also told he would have a long term feeding tube and would communicate not with speech but with Keyword sign. 

We showed them. 

Turning five is a big deal for kids like Ted. I say this because it struck me in all of our pre birth meetings and in all of the journals I read… that making it to age five without serious stroke, hypoxic brain injury, major cardiac complication as an hlhs kid is a huge marker. We’d been told many times of the odds of certain things happening “by age five” … everything was about five. 

So here is a video of Teddy turning five, my non viable fetus: 

Ted took his karate party very seriously. Oh and here he is on his first day of school. Mainstream school mind you and rest assured this child never shuts up so keyword sign was not required after he was 19 months old:

Still, we have a long distance to go with this beautiful boy. He has made it to five. He has so much to offer the world. Our hope remains in advancements in medical science. In the mean time we will continue working together to shorten the distance between Ted and his peers. He has such a strong love for life we know he can do it. 

Carolyn xx