So here we are again, 2nd August. Diagnosis Day. Today marks two years since I sat at the table in our old flat and wrote down semi lowbar hollow prosenkefaly. That’s exactly how I wrote it, whilst in my best telephone voice agreeing to come and meet the doctor the following morning to discuss our options. I rang Bill who got off the train he was on, heading out to his best mates wedding, crossed the platform and came straight home. Then I hit search on Google and my life changed forever.
This time last year when I started my blogging I ran through the experience that had been the rest of the pregnancy If today…. My desire to reach out to other mums at that diagnosis point in their lives was sincere and compelling. I wanted to tell them that it was all going to be okay. Not of course that I could. How would I know?
I guess if you’d asked me this time last month how I expected this post to go I would have thought I’d be dwelling on the horror of the pregnancy and reflecting on the difficulties we have come through in the 20 months since Imogen’s miraculous survival. Life had other plans. In this past month the HPE ‘family’ has lost a number of it’s beautiful and beloved children and the outpouring of empathy and love I felt for the parents of these children was astounding. Their short lives had a lasting impact on everyone they met, on hundreds who they never met but had simply heard about them and even on the thousands who, like me, were sitting reading their stories from the other side of the world.
Then, much closer to home, some dear friends of ours experienced the devastating loss of a deeply loved daughter and we were beside ourselves with sorrow and confusion as to how to help or ease their suffering. Once again struck by how completely unjust the world can be. Another short life with the impact of hundreds of longer ones.
As a parent of a child with complex needs who faces an uncertain future, it is all too easy to get used to feeling a bit badly done to when you watch developmentally conventional children, jumping in and out of bouncy castles, paddling pools, chasing each other around the park, chatting away with their newly acquired language skills, learning and growing at a frankly astonishing rate. Sometimes, even on the best of days you can find yourself slipping into self-pity. I like to think that most of the time I avoid this, I don’t feel sorry for us as I wouldn’t swap Imogen (exactly as she is) for anything in the world but it is fair to say that it isn’t often I feel like we have it far easier then most. Yet that is where I find myself today, feeling like the anniversary of our diagnosis is just another opportunity to celebrate how lucky we are and to delight and marvel in the miraculous wonder that is our beautiful girl.
If like us you are one of the lucky ones, if you can look at your life today and see love, joy, hope, happiness and optimism then drink it in, see the extraordinary in the mundane, take a breath and really feel the contentment, grab it with both hands and LIVE it.
…Right, now I will just dismount my high horse and leave it tied to this tree ’til next time.