Wednesday, April 9, 2014

Addendum to SIX!

Every time I think about Simon turning 6, I feel a pang of sadness deep in my heart.  It surprises me each time. It's a very strange experience to feel sad about a living child's birthday. I've been wrestling with this for a few weeks now and think I've identified what the sadness is about.

When Simon was critically ill in the hospital and we were faced with the very real possibility that he might die, I couldn't help telescope out our lives over the coming 5, 10, 15, 20 years.  I thought about how painful each holiday, celebration and especially, birthday would be if he died. I spent real time wondering how many years would have to pass before those events were filled with mere sadness instead of anguish. Every birthday is a reminder of that time when I was mentally erasing Simon from my future as I stared into his tiny face.

His birthday "should" be a time of joy, but I have found that for parents like us, joy and sadness slip into places you least expect them.

So be it.

Every year that passes also marks a year closer to puberty.  Most parents have a sort of comical dread of puberty- of attitudes and pimples and awkward conversations.  Our dread of puberty is borne of PTSD, of never EVER wanting to back to where we were when Simon first got sick.  Stories about kids who were stable for years and then decompensated again when puberty hit are not uncommon on our Cardiomyopathy listserv.  There is something about the hormone soup and accelerated growth that upsets cardiac stability. Stability we have fought  for until we were half-dead ourselves...

I've been trying to enjoy this "coasting" period we have had for the last few years (at least in terms of heart disease). The idea of Simon getting that sick again and going back to that life of constant terror and disruption is almost too much to face.  It feels like sooner and sooner I'll need to get back up on my perch to scan the horizon for signs of trouble.

Soooooo Simon turning  six feels...surprisingly complicated.

And it's amazing.


Off to have a celebratory dinner with our surly, amazing, thriving, feisty six year old superhero.

Spiderman/crossing guard at attention


Mama Kat said...

super he is! And I get it, I so very much get it.

ashef21 said...

I have never commented on your blog before Jamie but this hit home with me today and I completely and totally understand ALL of those feelings! Your comment about erasing him from your memories as you stare into his little face. It is painful. Not sure if you saw of not but our 3 month old was just diagnosed with HCM as his older Brother had before he was transplanted in 2010. Feeling crazy feelings of regret and uncertainty. Thank you for posting this. xo