I wrote this post for Mencap, in response to their #hearmyvoice campaign. You can find it here: https://www.mencap.org.uk/blog/foundations
I remember when Sam was a tiny baby it seemed to be constantly raining. For days, I did nothing but gaze longingly at the outside, in between feeds and nappy changes, wishing the torrents of water that streamed down the patio doors would hurry up and go away. I wanted the sea of mud surrounding me to dry up, in part so that I could shake off the cabin fever, but also so that I could play with my lovely new travel system (great colours and suspension) and show my lovely new baby off to the world. For a little while, it felt like a Keep Nancy In conspiracy.
Everyone who came to visit told me I was mad to want to go out into the bleak February chill. And, once I was home, I had a LOT of visitors. Almost the entire family, from long-lost aunts to my parents and sister, came to coo before the first two weeks were out, but, after the restrained hullaballo of the maternity ward, it was quiet.
For a while it had seemed as if I would never get home. There were blood tests for me, blood tests for him, debates over feeding, debates over whether or not he had Down’s at all. It took three days for the test results to come in. We had been told, the evening of the day he was born, that it was likely that he had a chromosomal abnormality, Trisomy 21 being the chief suspect, but up until the moment when a gaggle of medics with long faces headed up the ward to my private room, I had refused to quite believe it.
I mean, I decided that I didn’t care, that I still loved him, that I was still proud of this baby I had managed to produce, but still. Every time I went near a bath the tears leaked out, and I wrestled with my deep desire not to have to take on the added responsibility of bringing up a child with additional needs. I can still vividly recall that moment when they confirmed what everybody really knew. There was a collection of them, dressed in the NHS uniform of beige trousers and lavender shirts and one of them had an accent that reminded me of the character in the Fast Show, the painter, who didn’t like the colour black. ‘It could be worse…’ kept flitting through my brain; the ridiculousness of the situation filling me up with an inappropriate desire to laugh.
It’s never a nice thing, or an easy thing to be told that there is something wrong with the baby you have waited so long for. There is no kind way, no easy way of breaking difficult news. But despite the heartache, I seemed to be surrounded by people who were looking out for me and Sam. There was the midwife who took him onto her knee to help her with reception so that I could wash my hair. There was the midwife who helped me to get him started on the journey to breastfeeding, who chased away the one who stuck a bottle in his mouth, made me eat some breakfast when I had lost my appetite.
And when I got home there were all the visitors. Our new GP came round (we had only moved house a month before). The community paediatrician came round (she had to endure a lecture on woodwork from my father in law). The community midwife came round – for longer than she needed to, and brought colleagues with her, to introduce them to me and my baby. And the health visitor. Health visitors come in for a lot of stick, but mine, she who bustled in and out of my house with her scales and measuring whatnots, she who refused to let me come out into the rain and cold and go down to the clinic for I can’t remember how long but it was ages, she sat with me, she drank cups of tea with me, we talked. I knew, somehow, that she came because I was a high risk mother. A traumatic birth, fear for my baby, a struggle to feed; these factors often add up to a bad case of post natal depression, but she never let me feel like a statistic.
These people, this amazing team, they knew that I was working hard to assimilate my position, to figure out what I was supposed to be doing; they surrounded me, protected me. They joined with the women I had met through NCT antenatal classes and they heard the inner me, the one who knew that there was no such thing as normal, the one who didn’t care what anyone else thought and yet at the same time was worried about her ability to navigate the possibly stormy waters ahead.
They never pitied me. They never made a judgemental statement about Sam (other than to inform me that his hair was not, in fact, blond, like his father’s, but sandy red, like his uncle’s, or poke him when he refused to wake up for his 6 week check). They confirmed my desire to be pleased with him, to be glad that he was here, to celebrate the fact that we both made it out of the delivery suite in one piece.
They let me find my feet. They showed me there was solid ground.