What If…. A Guest Post for World Down Syndrome Day

what if

A Guest Post for World Down Syndrome Day, by Emily

I know your intent wasn’t malicious or unfeeling.

I know you thought you’d be saving our family years of heart-ache.

I know you thought you’d be saving our baby from a life that wasn’t as easy as it should or could be.

I know you were thinking of the two children that we already had.

I know you were thinking about me.

I know that you wanted to impart all the wisdom you’d gained from your own life experiences.

BUT

I think you were wrong to say I should abort my baby; that by having my baby I would be ruining the lives of the two children that I already had; that my life as I knew if would be over and that this would be a bad thing; that you understood that abortions aren’t pleasant but if I didn’t have one, I would be causing pain to the people who already existed in my family.

I think you were wrong to look at my five-week-old baby in the eye and turn to me and say…‘having a baby like this isn’t for us. We’ve talked about it and we would definitely abort.’

I think you were wrong to suddenly break all contact with me the week before my 7-month-old boy had open-heart surgery.

I think you were wrong not to find out about Down Syndrome first.

I thought seriously about what you said and I unpicked everything that I thought I knew about Down Syndrome, people, life, my family, my beliefs and my views. I felt that I had to justify my decision not to abort so that I could look everyone in the eye, and know that I hadn’t kept our baby out of an unacceptable selfishness.

The torment I felt was indescribable.

I lived for three days with one decision and I lived for three days with the other. I couldn’t tell my husband because I couldn’t cope with any more input or opinion. I didn’t want to hear him saying he wanted an abortion, and for me to not be able to go through with it.

All I could think about was the overwhelming shock of taking a tablet and giving birth to my dead baby, a baby that had died because of me. A baby that I had, at a given point in time, chosen to swallow something to kill it – I could see it, covered in blood. So still. It frightened me. I knew this image would haunt me. It still does. Was it something I would have to get over? Was I just being selfish? Should I man up and do what was right for the family? What was right for the family?

I thought and thought, the misery tearing through my bones. Life around me carried on as normal while I carried on thinking. I could see it on the 11 week scan: the nuchal fold was thicker, the shape of the baby. There was something different. I just begged and prayed to myself that whatever it was, that my baby wasn’t ‘incompatible with life’.

Nothing I knew about Down Syndrome frightened me or made me think it was a life sentence. I’m very much pro choice but personally I don’t feel that I have the right to pull the plug on someone else’s life.

But you made me feel selfish and I had to think about that.

Two more of my friends listened and listened and then they said ‘I don’t know what I would do in your situation because I’ve never been there but from what you’ve just said, if I was you, I couldn’t justify aborting either.’

I knew I had to keep our baby. It was the only decision I could settle with.

But this isn’t about that.

This is about boundaries, friendships and levels of empathy towards fellow human beings. You over-stepped my boundaries – it was you who put the black cloud on my pregnancy and made me want to hide in case anyone else had an opinion that I would have to deal with.  It was you who introduced me to the world of having to justify my son’s existence.  Until you spoke up I was proud.  I was up for any of the challenges that may be ahead, and I was proud to have a family with a difference. In a matter of days, you swept the tablecloth from underneath me. I felt so lonely, so embarrassed, so broken.

The doctors had so much pity. They took me into a side room.

The waiting.

‘I’m so sorry. Would you like to be tested so you know for sure? We can put you in touch with the team to discuss termination if you like?’ The look on their faces. The pity. The somber atmosphere. The black cloud got darker and darker as my pregnancy went on.

Some of you didn’t ask about our baby. I felt desperately sad. I felt I had to keep justifying our baby’s existence. I still do sometimes. I feel that I have to prove that having him was the right decision. That he’s happy. I don’t know why. I feel I can’t grumble about the bad days that you have with kids, because he has Down Syndrome. I don’t want to have to deal with the irrelevant ‘well, he does have Down Syndrome’ comments.

The point of all this?

Just this.

I wish you and all the doctors we encountered could take back your sad faces, your negative comments, your judgements and were just there to hear whatever I might have had to say. You had the power to stop the black cloud from descending and that would have been the greatest gift you could have given me.

I totally accept your view is different to mine, but I struggle to truly understand, not only why you would actually verbalise your thoughts to me in this way, but also why you feel this way. I can see your children having their own challenges on their way through life and I do wonder how your children are different to mine in your eyes?

I look at our boy now. I live with him every day and I just get prouder. He starts mainstream school in September. We don’t have two children plus ‘something different’. We have three children.

I’m really not sure where I would be today if I had taken your advice. What if I’d seen someone with Down Syndrome afterwards? How would that have made me feel? Would I have been filled with relief or deep regret?

I know the answer to that very well….

If I knew then what I know now, I’d have given you a piece of my mind and sat you down and made sure you fully understood what having a child with Down Syndrome was really like.

Maybe then you would have reconsidered your views.

 

Emily has a magical secret… she works for Santa at The International Elf Service. She is also a Registered Osteopath and a Mum to three children, including a wonderful little boy who has Down’s syndrome.

 

If you need more information on living well with Down Syndrome, these links may help

See also Jump! Mag for a wonderful report from young Agi, whose sister just happens to have Down Syndrome …

10 Comments on “What If…. A Guest Post for World Down Syndrome Day

  1. A beautiful and thought provoking post. It is very scary that medical professional’s advise termination rather than a more objective view at the very least. I can’t imagine the agony that Emily must have gone through – but in the end she has a beautiful boy and I’m glad she stuck with her instinct.

    • Thank you so much Nomita. Your comment means a lot to me. I’m afraid some people in the medical profession base their judgements on what they see but it’s not a fully rounded view of reality. So many children and people with Down Syndrome need no more healthcare than a ‘typical’ child and lots of typical children need far more healthcare than a child with Down Syndrome. I guess we all make our judgements based on the slice of life that we’re exposed to. Thanks again x

  2. Thank you for sharing this emotional post. I hope that it is read my many and that it provokes thought and a greater understanding. Thanks for linking up #bigfatlinky

    • Thank you so much for reading this and your lovely supportive comments – I think we all suffer from foot and mouth disease from time to time but I think what we don’t realise is the accumulative effect…

  3. Brilliant and heart wrenching all at the same time. I am so pleased you wrote this and so desperately thrilled you stepped above the negativity!

    • Thank you Beckie! I couldn’t have gone forward any other way without appalling consequences to my sanity. As it turns out I feel a better person for all of this and I’m very happy with our family, just the way it is!

  4. My mum (who’s an amazing woman and used to be a nurse) always says that children and indeed people with Downs “have so much love to give and only kindness in their hearts”. Congratulations on your three beautiful children. Thanks for linking up to #sundaystars xxx

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