Sunday, March 11, 2012

WDSD Post 10 Chronic sorrow

Pic 10 - WDSD - recently I learned the term 'chronic sorrow' it's one way of discussing the parents' feelings of grief when they find they have a child with a disability - mourning the 'normal' child they were expecting. The argument goes that the grief doesn't 'resolve' like it does after a death but rather it recurs at various milestones along the life of the child. Every now and again I watch Hannah - struggling at something - to learn or to play like other kids, to communicate - and every now and then there is a wave of remembered grief. A wish that she was 'normal'. I actually don't think it is that different to mourning the loss of a loved one at all ... it just isn't what you expect to get when you give birth. And just as I would never give up the memories of loved ones who have died I'd never give up all the countless joy and love and blessings that Hannah brings me for the sake of avoiding those occasional shores of sadness. No way - that is what chocolate was invented for wasn't it?

 The response to these random shared stories has been lovely and humbling - cos to be honest I feel a bit silly writing something every day on the same topic... I worry but that new friends I have made since the twins began school will think that I have a bizarre and morbid fixation on Down Syndrome.... I know that those who are my friends with DS and children with DS will 'get it'... it is part of my advocacy for Hannah - my Mum used to say in her brutal country style way - that you had no dignity left after childbirth (and I believed her cos I was delivered by a guy she went to school with - YEEEEEEWWWWWWWWWWWWWW!!!!!!!!) but now I think that the dark humour in that statement is so much clearer to me - my mum was a special needs mama too - and I know that she'd sacrifice convention for the sake of any of her children - and my sister who is deaf in particular - because society might stare, might question you support for the 'normal dreams' of such children - but as a parent you plough on regardless, it is their right and your destiny. Anyways one lovely friend's response was so moving that I am going to repeat it here. I hope that he doesn't mind - my blogging life is much more reclusive than my fb one!

 A reply: You breathe in the grief and it settles inside, turning and twisting, chiselling away at you Unveiling itself at, should- be birthdays and Easter egg hunts, and then there are the hidden unexpected times, other people’s children first day at school, filling out football team sheets with dates of birth and resizing your daughter should be playing with them. The Faustian pact you think about, late at night, twisting thoughts and last drops from wine bottles what grim bargains you would strike. Thankfully some things are beyond me, so we accept our holy host of grief. Only now and then do tears come to the surface (as I am typing this, is one of those “nows”) The few gifted among us turn their tears into what we call art and there are those among us who stumble and are drowned in their tears. You and I blend the tears with our sweat as we j keep pushing the bolder back up the hill...

No comments: