I remember going to church every Sunday as a young girl. I don’t remember much about it, only that I played Mary in the nativity play and that they made me ride in on the back of a donkey, (the part of the donkey played by a taller… Ok, slightly rotund kid) and that one of the angels wet her pants from stage fright. It’s funny the things that stay with you, hey? We went to church when we were little, for quite a few years but then I guess life took over and we stopped going. We’re not a deeply religious family but I think Mum and Dad wanted to give us as children, the opportunity to make the decisions for ourselves about whether it was something we wanted to follow or believe in. I’m sure I could get myself into a big debate if I tell you my personal thoughts on religion and that’s not my intention here but one of the MAIN things I remember about church is that there was a disabled girl there. Now, I know full well we’re not supposed to label her as “disabled” so please forgive my bluntness, but in this case I’m recalling how I saw her then. I remember her being really overly friendly, that she talked funny, that wore big brown boots, that she was overweight (I’m sure she wasn’t, more that I was just small) and that she frightened me. She didn’t have Down Syndrome I know that, but she had some kind of other learning disability but me being scared of her is something I’ve held onto and think about a lot. If I’m honest, I remember as a child being frightened of anyone who was “different”… homeless people on the street, people in wheelchairs, people who had lost a limb. If I’m truly, truly honest, I was scared of people who had Down Syndrome. I often think how ironic it is that I have gone on to have Oscar. Life works in mysterious ways.
Last week, in the Daily Mail (UK National Newspaper), there was an article written about a lady who chose to abort her baby because he had Down Syndrome. Often I read articles, think about it but don’t feel the urge to comment. This time however, I did.
She talked of how she aborted her baby because he had Down Syndrome but that also he had health issues including a heart defect. Now over the years I’ve come to realise, that just because it’s in a newspaper, doesn’t mean it’s true or completely factual, but there were just a few key questions I desperately wanted to ask her. I suppose the main point was, was she aborting her baby because of the DS or the health issues? For they are two very different things.
The day I saw the article, it soon became apparent from reading people’s views online, that a lot were enraged by her decision. I mean people were livid. So, if she chose to abort her baby because of the health issues, could I understand this? She explained that the baby had a 1% chance of survival. Literally only 1%. She wasn’t saying there was NO chance, there was at least some hope. Miracles do happen right? The article went on to talk about the love she felt for her child and how it was the hardest decision of her life, so with that in mind, surely that baby deserved a chance at survival?
As I read on, something I didn’t know and I was astonished and disgusted to read, was that babies with DS are legally allowed to be aborted at any point up until their birth. Which means, if you find out late in pregnancy you can abort at any time. I most definitely didn’t feel happy with that.
IF she made her decision based on the fact that the baby had Down Syndrome, how did that make me feel? I have always said I am all for pro choice as I understand not everyone feels they could cope but it’s my hope that in terminating, she had at least done her research on DS. By her own admission, she had little knowledge of it, by all accounts.
“For, as I discovered, we might think we know what we’d do in that situation, but the reality is that no one can comprehend the sheer agony and complexity of making that decision until faced with it yourself.”
The article talks about how it was the hardest decision of her life… But the cold, hard reality of it is that most people, given the choice, would have done exactly what she’s done. We know that, as 92% of people with a prenatal diagnosis do so.
I guess this is where we come in. It’s our job as parents to tell our side. For it to be the truth, that life is not all that different to a “typical” life and that she most definitely could have coped with her son had she really wanted too. I, along with some other parents, are hoping to publish some kind of booklet that will be given to new parents who are given a pre or postnatal diagnosis of DS. To help them see that, although there may be bumps in the road, life most definitely does go on. It’s still very much in the early stages of development but after putting out initial feelers about the project, we have been met with our first hurdle. Some hospitals don’t want to give out these booklets or advertise the fact that they have them, in case they’re seen as too “pro-life”. This saddens me when they’re happy enough to have posters on the wall advertising Down Syndrome Screening yet won’t help others faced with this, see the other side. Hypocritical, perhaps?
So, was that lady guilty of not doing her research? Or was she simply just as I had been in church, imagining someone who was different and being frightened? It’s my hope that in the future, that if anyone is faced with the same “dilemma” she found herself in, that they make an informed decision, based on up to date information.
When I woke up this morning, I came across another story, written by the same newspaper, telling a story of a lady who has a 47 year old son with Down Syndrome, who wishes she’d aborted him. She was indeed supporting the lady who had aborted her son. She talks of the challenges she’s had to face all his life. How she knows her life would have been happier if he wasn’t in it. Her concerns about asking her eldest son to look after him, after she and her husband have gone. She calls her son a needy, difficult, exasperating child who will never grow up and how they placed their son in and out of care throughout his childhood because they were unable to cope. They now see him on weekends, when sometimes he cooperates and leaves his sheltered accommodation but sometimes refuses. Her final words are – to every expectant mother to be out there, facing the knowledge that they might bring a child like her son in to the world… To read her story and do what’s right for them and their family.
I sat there shocked initially, feeling sick and disgusted that she could say such things. She was his mother. How could any mother say that about her child? But then I thought more. I am always the first to say, that speaking openly and honestly is the best thing to do. And that’s exactly what she’s doing here. I felt saddened that someone may read this who is expecting a child with DS and it might frighten them to death. Even though it would have been easy to be cross with her, I was more upset with the newspaper for printing the story and sensationalising the point. It would have been easy for me to rant and rave but I had to try to rationalise. This child was born into a time where there were no support groups for parents like there are today, there were no interventions or therapies. We are so lucky that our children have been born into a time where they have all these services available to them. Where people are more accepting of being “different”. Thank goodness times have changed and it’s all about inclusion now. And while I don’t agree with what she’s saying and hope that she hasn’t influenced anyone in her outdated views, I pity her for feeling this way. For if she felt that strongly, why didn’t she put him up for adoption? He may have had a better chance of leading a happier life, with someone who wanted to put the time and care in.
This week I posted a photograph on my page of Oscar, in support of a new mum who’d found out at birth that her son had Down syndrome and who was struggling. I wanted to show her that we as a family ARE happy, that the grief does pass and that life is worth living. The response I got from our followers was incredible. Messages of hope and reassurance, stories of how others had had children with DS in their lives and how brilliantly they were doing and how life was good. Out of all the incredible responses, one stood out to me. A lady talked of her son, born 29 years ago, being apprehensive about his future and what a very wise doctor said to her…
“Put any child in a closet and they will not flourish. Take your son home and do what you would do with any child… Teach, encourage and give him goals. You will be surprised at what he can accomplish.”
And here’s the point. Like we all do, including me prior, we ALL have misconceptions about what having a child with DS means for us. The lady who aborted must have had misconceptions for her to have done so and I guess the lady who has the older son who WISHES she’d terminated… Maybe she didn’t open her eyes enough to see that, with more love and acceptance on her part, her son could have done so so much more. I don’t hate either of them. I don’t judge them either. I’m just sad that both of them haven’t had the same opportunity as I have, at seeing the world through my eyes. It’s my belief that being different, simply means you have something unique to offer the world.