Guest Post : Rowan’s Story

This is the story of Rowan, a friend of mine, and her experience of motherhood.

I am flattered, honoured and amazed that she wrote this for Mama’s Mind Matters, and she’s done it simply because she also feels passionate about sharing, and empowering Mamas’ Minds and Health. It is a tale again about how we smile and pretend things are better than they are, when inside our minds our going awry, sometimes in the most unconventional of circumstances. Over to Rowan:

The Things we Hide

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This is a story about the things parents hide from each other. It’s about how we don’t let ourselves be unhappy or confused by parenting and how in the midst of caring for our kids, we can forget to care for ourselves or let others care for us.  

My first pregnancy was heaven. Easy. There was nothing I didn’t love about it. So in love was I with the unborn girl that even labour was exciting. My second… not so much. We had taken six years to conceive our daughter; four years on and having tried and tried again, we had given up on having a second. With our daughter in school, I had just started a new job and we were settled on our single-child family. Then, the day after I turned 39, there were two lines on a stick telling me that, after all, everything was about to change. It was an extremely strange sensation: happiness but slight irritation at the disruption that would ensue. Therein was the first pang of guilt – that I wasn’t happy enough at my happy news, that I should, especially at my age, be more grateful.

The Heartbreak Room

The 12-week scan. As we watched the sonographer locate and measure, there was much joy at seeing the froggy legs, the ginormous head, the oversize belly. She arrived at the nuchal fold, the measurement at the back of the neck which, if over a certain amount, indicates several potential ‘abnormalities’. She went quiet and wouldn’t say what she had found. This being a second child however, I could remember this fold indicated a high chance of Downs Syndrome, as well as some other things I couldn’t recall. I asked but the sonographer said nothing. We finished up and she took us into a small room, which we shall now call the Heartbreak Room.

The Heartbreak Room, for anyone unacquainted, is a small, grim, windowless space with three chairs and a table. Although I’ve only seen it at our local hospital, I feel sure it will exist in every Women’s Health centre across the land. On the table, there are always tissues. These are there because in the Heartbreak Room, everyone cries. It’s almost designed for tears, and if somehow one withstands the design, the lingering sense of other people’s distress will move anyone to weeping. By the time the Foetal Development midwife arrived – for we had immediately graduated to specialist care – I was a snivelling mess.

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The midwife explained the fold measurement, combined with my age, delivered a very high chance of three syndromes: Downs, Edward’s and Patau’s. The latter two children do not survive and we swiftly opted for further investigations to rule those out. The next few weeks saw those investigations, of blood tests and scans and wondering whether to find out definitively about the possible Downs via an amniocentesis. Once Edwards and Patau’s had been ruled out and we knew our boy – because by this time we also know we were having a boy – would be most likely Downs, we dismissed the need for an amnio. And so we carried on. We were happy with a Downs child.

How did we reach the point where we were so sure our kid was Downs? Well, first the nuchal fold, which gave us a chance of 1 in 2 (a high risk pregnancy is 1 in 150). Then a series of fortnightly scans revealed he had a patch of fluid next to his right heart ventricle; he had some fluid in his brain; he had an echogenic bowel. These are ‘soft markers’, indications of Downs that taken cumulatively deliver a conclusion of Downs in a foetus. Of course, because we hadn’t had the amnio, no-one would say definitively that he was a Downs kid. But, our extremely lovely midwife advised us to start making friends with other parents of Downs kids, we began to research groups in our area. We told our friends we were having a boy and he was Downs. I began to feel incredibly protective and proud of him just for surviving this far. He was our special boy.

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He arrived. I saw him and my heart flew away – this boy! He was big and hairy and perfect. The paediatrician was present for him at the birth, there because Downs kids are more likely to have heart and lung problems, took one look at him and said ‘he’s not Downs’ and left the room. I felt surprised and continued gazing nonetheless. It’s a blur, looking back, but I think I thought she must have been wrong.

We had an extended stay in hospital. There were tests and scans. He cried a lot. He had jaundice and wouldn’t feed properly, which turned out to be tongue-tie. The jaundice was fixed in hospital but the tongue-tie not, possibly because there’s an assumption Downs children will have trouble feeding. Feeding was excruciating. More tests indicated he might not be Downs, but might have a thing called Mosaic Downs, where instead of an additional chromosome, there is transposition between the chromosomal structures. Mosaic Downs results in learning difficulties but no physical characteristics. We went home with no conclusions.

 

Visitors came and commented on how he didn’t look Downs. We started to tell people, almost apologetically, that it could be he didn’t have the syndrome. People were pleased and started saying how good he was ‘normal’. I couldn’t bring myself to share their happiness and instead felt oddly sad. I missed the boy I had been expecting. I worried that somewhere, because statistically a Downs boy must have been born to someone else, our boy had been born to the wrong couple who wouldn’t love him and he would be unhappy and neglected and I should really be looking after that boy and not the one in front of me. I felt embarrassed, as if we’d fabricated something.

 

I made jokes about this to my Health Visitor. She asked me if I felt depressed and I laughingly said of course, turning it into something amusing and convincing her I was fine. But each day I would have to force myself to care for my son, while I was regularly furious with my husband and daughter. In hindsight it was very clearly PND, but should it be that easy to fool a Health Visitor? If she went away happy then maybe I should just buck my ideas up, right? After all, the kids were still clothed, fed, kept warm and safe. They were not neglected. But if there was any joy in our home, it was sporadic at best. We had been happy and at that point we weren’t.

 

This was the point at which I needed that care, needed to be persuaded to be looked after. I had an idea of something in my head that didn’t happen and I failed to cope. We expect so much from parents. Yet any act that reveals the neediness of parenting, from the shit and vomit and blood and bodily assault that is having a child to the exhaustion and the shit and vomit and tears and terror, everything that reveals a baby as the fearsome object that it both is and, of course, profoundly isn’t, is sent to a strange foreign land that looks terrible on Instagram. Instead of allowing for the messiness, we fragment ourselves to disallow disorder and impose control.

 

Two months after our son was born, we had a check-up. There was a letter stating ‘no chromosomal abnormalities’. So there it was. All the soft markers and the worry and the research and the everything – it all stood for nothing. Except of course it didn’t – we needed to cut ourselves a break for wanting so much to make life for our Downs boy as easy as possible. There too was the key. Another friend, whose brother has Downs, said to me that it’s terribly simple: the less needs a person has, the easier it is for them to make their way in this world. Our boy, our ‘normal’ boy, will find it easier than if he had been Downs and that alone is a good thing. Once that penny dropped, it felt easier. Gradually the guilt and the anger ebbed away. I still feel guilty for feeling them in the first place. But I got better, accepted my son and fell utterly in love with him.

 

He has the name we chose for our Downs boy, chosen because Downs children often have lisps and we wanted him to be able to pronounce it. They are, after all, the same person: the boy we have and the imagined boy that never was. I’m not supposed to miss him but I always will, just as I will always love the boy I have. And that, in its profound messiness, is just fine.

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