Emma, Mum to Spencer, 16 weeks. Born 14/04/14, left sided unilateral microtia and left jaw hemifacial microsomia.
When I grasped Spencer and pulled him up from the bottom of the pool to look at him for the first time there was no doubt it was a shock to see his ear. But I was so overwhelmed that he was here, living and breathing and fighting fit that I was just so happy.
For the first couple of days my husband and I were defiant about it, strong for our family and each other and not wanting to admit that it troubled us or that there was any fear or anything to pity us or Spencer for, there are plenty of people worse off. Then it hit us like a ton of bricks, a whirlwind of emotions on top of having a newborn. The constant merry-go-round of having to explain to each different midwife that came, the health visitors, the GP, at baby clinic and baby classes. Breaking it to my antenatal group and all our friends and work colleagues.
It was exhausting telling the story over and over and being positive and upbeat. But soon enough everyone who needed to know, knew and we could just get on with it. It was and still is hard not to blame myself even though rationally I know it was nothing to do with me.
Long exhausted nights feeding him sometimes took me to the edge with worry for his future. But we just take each amazing day at a time and now? Yes I sometimes get a little upset from time to time but the group has helped me see that Spencer has some challenges like many other children do with different social or physical anxieties, but it doesn’t need to be a barrier to anything – as a child or an adult. He will do well at school, he will have great friends and he will fall in love. He’ll probably have an even stronger character than he might have done and will see difficulties as things to overcome, not dwell on or be defeated by and we will be so overwhelmed with love and pride. I feel so much stronger and happier about the future than I did in the early days and will continue to actively use the group. Spencer and I have already met a new baby who is just like him and we are no longer alone.