Tuesday, 4 June 2013

Working Smiling Resting and Suddenly Crying

Each year I think I'm better now, it doesn't affect me anymore, look how far we've come, look how lucky we are and look how good it is.

Each year as I write birthdays and anniversaries in my diary I put his name, nice and small, on June 4th and pause a little to let the memories subside without actually emerging.

This year I put brackets around his name and when one of the boys saw it they asked why is that there?  I breezily said, oh well I like to remember the day I found out that you/L had his special chromosomes.

Really it's all fine, I'm coping so well, he is miraculous, it's all in hand and life is rebuilding itself beautifully and right now, when I don't think about all the unknowns, and all the silent "special parenting" I do all day every day, it all works.

And yet, just now I was laughing and throwing a ball for my dog, in the sun, in my garden on my day off.  One work call was finished and I'd had a lovely follow up chat with my fantastic colleague.  A diary full of work calls and coffee with friends and supermarket lists and sunshine and sandals and shorts awaits.  But as I threw the ball for the umpteenth time I suddenly and inexplicably started to cry.  The dog paused and lay down looking at me, so I stopped myself but the smile hasn't yet come back.

The tears are stuck somewhere in my ENT system and I probably need to watch something funny and moving on YouTube or Twitter or Facebook to set it all free.

Because no matter how good, how glass is half full, how completely thankful I am for our luck, his magic, my strength and our teamwork.....it's not ok.  6 years on it is still absolutely not ok that he and we have had to enter a world of doctors and unknowns.  To have had to find and join research programmes to help with all the gaps in information.  To have to have unbelievable multi-tasking skills in order to do everything I need to do.  To work and parent and be, as I have chosen, an advocate for and member of a charity in order that other people don't have to feel like I felt back then.  Like I still sometimes feel now.

He's my brilliant boy with a brilliant brother and a brilliant Daddy and we will be fine I hope.  But today, this second and minute and hour, it doesn't feel fair.  I hate how it felt to sit in that waiting room back in 2007 and be called in to hear a diagnosis that I didn't understand.  To have had to learn genetics 101 in order to explain it to every doctor we see and all the well meaning people in the circles of our lives who ask. To never really be allowed a day off, or for my brain to atrophy properly into relaxation for more than a very short period of time.

And still, most painfully and ever present in our lives, to have to justify why I am this emotional/thankful/unable to break the cord even though in everyone else's eyes he seems just like all their children.

But then I breathe, sniff back the emotions and come back to today, now.  All the good stuff and all the work I have done to stay strong, that we have done to love and come together, and how determined I am that this will be the making of us all and not the breaking.

Every year it's different and yet every year it is exactly the same as well. So today I accept this marker, this timeline back to then.  This thread of pain and tears and hope and love.

The stuff of life itself

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