You must be the change you wish to see in the world

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.

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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.

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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?

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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.

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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.

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13 comments

  1. Aasa   •  

    Hi! Thank you for your beautiful blog. I gave birth to a wonderful little boy namned Bosse September 12th. I read your blog and follow you at Facebook, love what I read

  2. Aasa   •  

    Hi! Thank you for your beautiful blog. I gave birth to a wonderful little boy namned Bosse September 12th. I read your blog and follow you at Facebook, love what I read

  3. Jane   •  

    Once again you’ve given me food for thought. Thank you for your insight and honesty.

  4. Sam   •  

    Really interesting post Sarah. Like you I used to be scared of mentally disabled people when I was a child. I remember there was a special home for people with Downs and other disabilities near my home and my Grandma took me to a summer fete there one year and I was so scared! I think it is the suggestion that people whose brains work differently to the norm might be capable of anything and be inappropriately over friendly! (I was also scared of dogs!). I had a CVS procedure with my second and briefly contemplated making that awful choice that no-one wants to be faced with. Since I started blogging I have become much more aware of the experiences of parents whose children have DS though and its nice to know that it’s not that dissimilar to the normal parenting experience. Do you think you would have made a different choice if you’d known and had an early diagnosis (without knowing what you know now)? #sharewithme

  5. Such a good post.
    I would never know what I would do in that situation but you are right about the informed choice, I would get all the facts together first. And at the end of the day you have to remember that they still have a life to live, it will just be a little different.
    As for the mother’s article that does sicken me, that she feels no love for her own child, that’s just heartbreaking.
    Great post, dropping by from the Share With Me link up.

  6. Seychellesmama   •  

    Wow, reading this I went on an emotional roller coaster. Honestly for most of it, there was like a rock in my stomach. Initial reactions to those newspapers was a mix of anger and sadness but it is as you say the newspapers that should have the anger directed at them for these negative stories they are posting.
    The end of this post made me feel a lot of joy for the support you have shared with other people whose children have DS. I think it’s so wonderful. You really do look like a wonderful, happy family. Oscar is so so so gorgeous! Xx

  7. Potty Mouthed Mummy   •  

    Oh gosh this is wonderful, powerful and an amazing post. I can’t know any of these emotions or feelings, but your perspective on both sides is wonderful. That quote is so very true. I think any of us as mothers, need to encourage our children to flourish in any and all ways they can. That is our job. I loved reading this, thank you for sharing xx

  8. Life at the Little Wood   •  

    What a beautifully worded discussion. Your little boy is absolutely gorgeous- I’m sure you can’t imagine a life without him. I love the quote that you have used here, and I think in this little space you are most definitely affecting change and breaking stereotypes xx #sharewithme

  9. My Family Ties   •  

    Oscar is a lucky little boy to have a mummy like you who champions him in such a positive way. I too am speechless at the lack of understanding and inability of parents to see that all children are special in their own way and deserve every chance to be born and loved.

    My 15 year old has ASD and I wouldn’t change her for the world, yet I have had people say to me if they knew in utero that their foetus was autistic they would abort! It’s a crazy world we live in with attitudes like that. I am reminded at times like this of the saying ‘God only gives us what we can handle’ – not being religious myself I can still get the profound meaning that is transparent in parents that refuse to accept any child that is less than perfect. They do not deserve to feel the love that a Special Needs (for want of a better description) can bring to your life and how they can enrich your life in a way you never knew possible.

    I read your post with a little tear in my eye and also anger at the ignorant attitudes that you have to deal with, but no one will know just how happy as a parent it makes you to have such a wonderfully special child in your life. We are the lucky ones! xx

    #ShareWithMe

  10. Moderndadpages   •  

    Well said! I enjoyed that post. Oscar is a such a cutie! I read that article about the woman with the 47 year old son with DS, and as a parent my gut says to me how can you say such things about your child. I did however have a best friend growing up who’s brother has DS and we all used to play and have fun together and I never really paid attention that he has it. We just played. Thank you for sharing this post! 🙂

  11. Tarana Khan   •  

    Thank you for sharing your story! Parenting is a hard job, and some people feel unprepared for it because of a few challenges. I cannot comment on them, and I am not judging, but don’t like that the media is showing only one side of the story. #sharewithme

  12. You are really strong and your words are full of conviction. Thanks for sharing your thoughts. Changes should be done and information about DS should be available to inform people esp mothers to be of what it is and what its not. #sharewithme

  13. Jenny   •  

    WOW hunny that was so moving and powerful! I don’t know where to start on my comment. I am surprised a newspaper would print something like this too. It’s hard to say how we would feel and react if in that position until we are but I do think you are spot on when you say it’s a different era back then then it is now and people need to do their research for sure. Thanks so much for linking up to Share With Me #sharewithme

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