Grieving for a lost childhood

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.

What I didn’t mention was what happened after the appointment ended.  The plan was probably to collect Ayan from my parents’, go home and try and figure out what came next.  When we got to Mum and Dad’s, we walked up the stairs, Mum asked us something, I guess along the lines of “How did it go?”, and we just shook our heads, chests too tight to talk.

And my Mum did what my Mum always does, without even understanding what had happened.  She became our rock, our shoulder to cry on, and our never ending support.  She took Jules off to bed, sat down on the couch next to Nigel, and held out her arms to us both.  And we sobbed.  Nigel against Mum’s shoulder and I was on the floor, with my head on her lap.  She stroked our hair and rocked us, as she had countless times when I was a child, and too many times to count since that day.  We must have woken Dad up, because he came out and hugged us both tightly as well.  Then we started to speak, neither of us really wanting to say the words that would tell my parents that they would probably outlive their grandson.  The rest of the day is a blur.  I know we called Nigel’s parents, our brothers, sisters, and friends.  And had to find the words again and again, telling those closest to us that one day, soon or in the future, we would lose the little boy we all loved so much.

We grieved that day, and over many days to come, over the very real possibility of losing our child.  He’s our eldest child, our baby boy.  One day we would lose him to this horrible condition, and already we had lost the potential for his life.  We couldn’t see the possibilities of any miracles that day.  All we knew was that we would never buy him his first school uniform, never go to a parent/teacher interview, never see him graduate Primary School, or help him buy an outfit for his High School Prom.  Nigel would never be able to help him get past his nerves on his first date, and I would shed no happy tears at his wedding.  We would never get to hold his babies in our arms.  There were so many ‘nevers’. 

Never.  Never.  Never. 

It wasn’t fair.  It still isn’t.  One thing has changed though.  We can see the miracles of an everyday life, perhaps ones that some of you will never understand how lucky you are to have.

We’ve reached milestones we never thought we’d reach.  Experienced highs & lows we never thought we’d get the chance to live through and, against the odds, I got to share a dance with Julian at his Year 7 Graduation and Nigel got to take some photos of him with his teacher and the best school Principal we have ever known.   

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.

                      

We try as much as possible to fill his life with possibilities, to see past the “I can’t” to the “I can”.  He may never run a marathon, but he can read a novel in a few hours that most his age would read in a few weeks.  How many of us can say that?