If today is the day that you get news which rocks the foundations of your world, if you find yourself dizzy with horror at how you will continue to function, then your today, is my yesterday or, more acurately, my one year ago today.
In honesty I had forgotten that I’d started this blog almost a year ago and it was my need to write down my feelings on the anniversary of the diagnosis that brought me back. There it was, in black and white, me, a year ago, full of fear, shock and disbelief and importantly a hope and a resolve which, I had yet to acknowledge, but was clearly present.
The months which followed my first post were without question the most difficult of my life. I never returned to tell our story as it was too painful, too personal to commit to ‘paper’. The medical meetings were bleakness after bleakness and the letter which stayed with us throughout the remainder of the pregnancy outlined in no uncertain terms the likely outcomes. There were three options. Option one – your baby will not survive to term and nature will take its course. Option two – your baby will be born but labour will be too stressful and she will die within hours, the letter outlined the fact that they would hand her to me to die in my arms! Option Three – your baby will be born in a ‘reasonable state’ by which they mean breathing, and she will be transferred to the neo-natal unit and eventually the hospice. That was it, our best option was a hospice with a severely disabled baby with no chance of any quality of life.
Important to say at this stage that the doctors we spoke to were exemplary and could only tell us what research and a very small pool of experience with the condition told them. I hold no resentment to towards them.
So the months rolled on, every day I woke up thinking today will be the day and often I’d realise that I’d not felt the baby move for a while and my spine would run ice cold until I could be sure I’d felt her move again. We had to continue with life, there were people around us who couldn’t bare to see our pain and this helped us to paint on the brave face and live. We did everything that we had planned, went to parties, went on holiday, cuddled our friends children, congratulated people on the arrival of their healthy babies. There are a few incidents over the months that stay with me as being my ‘rock bottom’ emotionally. The first of which was on the holiday we went on just after the letter with our options had arrived. It was a holiday with all my family, parents, siblings, in laws etc. It was a good holiday, fun and full of love and support and we both enjoyed it. On the last night we went to a restaurant and outside there was a brass band playing. Now I love Brass Bands we had one at our wedding reception. As we stood listening they started to play Smile by Charlie Chaplin. It was only as the words began to start in my head I realised that I could hardly breathe. ‘Smile, though your heart is aching/Smile even though it’s breaking’ Standing up from the bench and trying to compose myself is possibly the hardest thing I’ve ever had to do.
Then before I knew it it was December and I was still pregnant and the baby was going to arrive. We had bought nothing as we had no expectation of bringing her home and we went into the hospital with a bizarre mix of resignation that we had done all we could and hope that it was enough and fear that it wasn’t. The neo-natal doctors came to see us three hours before she was born because news had reached them that we were optimistic and that we had hope that she would make it. They came to manage our expectations and re-iterate that it was very unlikely that she would survive, they even told a story that another baby with the condition had died in the delivery room just a week ago. I tell myself that it was the pain he felt for that family which led him to tell us that story. As though preparing us would ease our pain but I don’t ever think I will understand the logic of sharing it with a mother in labour.
There is of course much more to this story, the seven minutes after she was born during which she didn’t breathe, the moment when they said that she could come with me rather than go to the neo-natal unit, the bizarre occasion when she was 2 days old and a midwife came to apologise that we couldn’t be sent home until the next day since they needed a consultant to see her. I cried, and she was apologising, I said ‘No you don’t understand, I can’t believe that we can take her home’.
And now one year after the diagnosis shattered our world I sit here watching the Olympics, while she sleeps next to me. Her life is not without it’s challenges (who’s is?) and she will struggle developmentally and there is always that uncertainty which on some days feels more claustrophobic than on others. Medically she is truly remarkable. Personally she is spectacular.
So if today is that first day for you, and you know that there will be other dark days to follow, I truly hope that the sun comes up for you and shines as brightly as it now does for us.