What do you do when your life turns upside down in an instant, when the dreams you have evaporate infant of your very eyes, when the baby you expected isn't the baby you now have?
How do you cope when there are no explanations? Or when science tells you that genetics is responsible for the hand you've been dealt? Who do you blame when you need to?
I had nothing and no-one. Goldenhar syndrome is a 'sporadic anomaly' aka just one of those things. I couldn't blame science, or God but I needed a place to direct the anger, the hatred, the grief.
So I blamed myself.
I was convinced my husband blamed me anyway so I might as well accept the responsibility that was actually never mine to claim.
Harry was transferred to Hope Hospital (27 miles away ) in the first few hours of his life and the first time I visited him, one of the surgeons spoke to me on the phone.
He said "I can promise you three things; your son is a beautiful boy and we will do all we can for him. If there's something we dont know, we will get the best help for him. and finally, it wasn't your fault. I know that Mothers blame themselves a lot but it was nothing you did or could have prevented" I couldn't speak for the enormous lump in my throat and the flush of emotion all over my red face.
It helped me to remember his words over the years but honestly, I think it took a good ten or more years until I truly believed them.