In yesterday’s post (Too long to diagnose, almost too late), I mentioned that with the diagnosis of Idiopathic Pulmonary Arterial Hypertension (or Primary Pulmonary Hypertension as it was called then) came the news that it had a mortality rate of 2 – 5 years, and that without treatment our little boy would not survive. At that time, it was unlikely that he would survive to start Preschool the next year.
We’ve had the joy and excitement of planning his high school years & met with the High School Principal to discuss how everyone at the High School will be helping us this year. As a bizarre twist of circumstances we found out that his Japanese teacher was my Japanese teacher from High School.
We fight. We yell. We laugh at his ridiculous sense of humour.
As a bonus, I get to steal the novels written by his favourite author because we share a love of books. We may never get to buy him an outfit for Prom, see him married, or hold his babies, but we’ve watched him hold his younger siblings, chuckled at him changing his first nappy and taken lots of photos of him holding his younger cousins as babies. We may not get to share these things with him forever, things that so many take for granted but, every day we have to believe, believe in the miraculous, the astonishing and most of all, the love we share with Julian.