I wrote this when I only had one child. I hadn’t yet learned how many times three of them would put me in the hospital – worrying!
For quite a long time now I have aspired to be ordinary. I don’t want to be special, I don’t want to stand out from the crowd; humdrum would suit me fine. Unfortunately I don’t think that’s ever going to happen. My family is out of the ordinary. Especially my son Sam, the one with Down’s Syndrome. Up until he arrived I was doing quite nicely at keeping my own difference generally under wraps. My scars aren’t visible unless I go swimming, or it is particularly hot weather; I had major surgery when I was six years old, you see. Thanks to him I can’t hide any more.
I thought that having a baby was a relatively simple thing, once the doctors had got over the novelty of listening to me breathe (that’s part of the surgery thing) (it’s a lot easier to tell people I suffer from asthma). All I had to do was get pregnant, push it out with as little intervention as possible, get breast feeding established and I’d be off, doing the whole parenting thing; taking baby to swimming lessons, music sessions, running the parent taxi service my mum and dad ran for me. Even when Sam’s chromosomal abnormality, Trisomy 21 (that’s Down’s Syndrome to me and you) was diagnosed, the ‘difference’ implications didn’t quite sink in. I knew that Down’s was a learning difficulty and that people with Down’s looked different, but that was about it.
I didn’t know, for instance, that it carries with a 50% chance of a heart defect, from life threatening to the kind of tiny hole that many of us are unknowingly born with. I didn’t know that his low muscle tone would mean I had to teach him to sit, to stand to crawl and to walk. I had no idea that the simple addition of an extra chromosome would make him one of the most vulnerable people in our society, in ways that I still don’t like to think about, or that there would be a whole range of possible problems, from bad vision to hearing loss, to early onset of dementia. I didn’t know that Sam would struggle so to acquire language and that it would be years before he called me ‘mummy’.
But if I’m honest, the prospect of a heart defect, or some other problem that required surgery, scared me, in those early days, more than anything else. Because, thanks to my own experience as a child in hospital, someone who had surgery when very young, I was in the unusual position of being able to see his situation from both sides.
When he was a teeny tiny baby, going for a heart scan was possibly one of the hardest things I had to do. I thought, a couple of days after I’d had the baby, I would be going home, just like all the other new mums, not trailing down the motorway to another hospital. But it wasn’t so much the fear for my child, rather the whole double perspective thing that was so unexpected and overwhelming. By a strange twist of fate we took Sam to the same hospital where I had been a child patient, just over twenty years before.
It had this weird sense of the familiar and the unknown; the front steps looked smaller (after the way I had described them I think my husband was expecting something like the entrance to the British Museum) but the atmosphere and environment was just the same. Even the posters on the wall encouraging me to look after my heart looked looked the ones I had enjoyed as a child.
The strangest thing of all was seeing a trolley bed. It was black leatherette with steel legs and those big black wheels with pneumatic tyres. And the scariest thing about it was that it had a seat belt. For strapping children down with. And you know what? I remember being strapped down to a trolley like that. I remember being terrified by the most non-invasive of scans, dreading the blood lady who would prick my fingers, and hiding from the physio who came to pound my chest, lying on the painful side first so that I could get it over with.
I realised that this was perhaps the future for my own baby. He might have to spend his life in and out of hospitals, with years and years as an out patient, being pawed/pored over by student doctors because he was an unusual case. Fat chance of fading into the background then.
Thankfully for Sam, I didn’t have to follow him straight into the operating theatre, as did my mother, waiting to find out whether or not he had pulled through, wondering if they would find anything else while they were in there, as his heart turned out to be just fine. Rather, he waited until he was two and had his tonsils and adenoids removed following a broken leg (one day, when I think I can manage I’ll write that story!).
I think it’s every parents’ nightmare that they are going to have to spend large amounts of time in hospital worrying about their precious one; I certainly know it’s mine. The nights I have spent in hospital watching oxygen sats trickle downwards have to rank amongst some of my life’s least pleasant experiences. And it is surely one of every parents’ nightmares that their darling child will be different, that they might look odd, or behave odd, or not be able to perform as well as their peers; that someone, sometime, is going to draw them aside saying, ‘I think we have a problem’.
I have worked hard to take the view that my mum tried to instil in me, when I was recovering from my own surgery; that the signs of difference, mannerisms, scars, funny looking faces, are badges of bravery. Signs of courage that your children have had to live through experiences you had rather they hadn’t, but make them who they are.