Sunday, 2 March 2014

Emily's Room

I am sitting in Emily's bedroom; sitting on her bed actually, trying to find some space, some peace, some quiet in a busy family home. It's early evening and as I look through Emily's window there's still some light left in the day but dusk is falling quickly.



Do you ever just go and sit in your child's bedroom? (even if that child is now an adult!) If you haven't done it - and you can get permission to do so - I'd encourage you to take a few moments to do just that and see what life looks like from their perspective. It's very revealing.

Emily's room is not large, it's as much functional as it is comfortable, but it's hers and there are signs of Emily all around. There are numerous pictures of Emily and Jono - her boyfriend of five years - heart shaped picture frames, some with added sparkles and flowers and pretty things. Every picture tells a story. They are happy.

My eyes begin to examine the room, not just looking but seeing, there's a difference. Perfume and make up. Books and bunting. CD's and DVD's, hair brushes and GHD's. More photo's of Em with Sophie (one of her best friends who happens to NOT have Down's syndrome), Em with Laura and Matt, her sister and brother. And a photo of a dog - I have no idea whose dog that is!

"Keep calm, the kettle's on!"

There's a sign above the door which reads "Keep calm the kettle's on!" which gives away Emily's liking for an early morning cuppa!
Teddies, more books and a camera - ready to capture memories yet to be made.
Favourite boots and an iPad (I wish I had a pound for every minute Emily has spent watching Ant & Dec on there!)
An invitation to a disco at the school she left nearly three years ago, where she'll meet up with old school friends.
Lots of pink things.
Certificates for passing stages 3 & 4 of her (mainstream) Musical Theatre "Performing Skills" course.
There's another picture of Emily & her Mum snapped having the time of their lives on one of the big rides at Alton Towers.
There's a radio, a CD player, cushions, a make-up bag.
Oh, look at that, I almost missed the large calendar of a certain Mr Gary Barlow, hanging on the back of the bedroom door.

So, okay, I hear you say. What's so different about this room? What makes this room worth writing about?

Well, that's the point! It is no different to any other young woman's bedroom. The photo's are unique, just as we all are, but this is a room that belongs to a 21 year old young woman. A young woman with friends and a family, a young woman with hobbies and who loves music. A young woman with a desire to look nice, to smell nice. A young woman with a crush on a pop star and TV personalities. A young woman with a steady boyfriend. She is happy. She has hopes. She has dreams. She has fun and she has memories. She loves life and she brings life to this room, even when she's not present.

And as I sit here and ponder a shiver runs down my spine. Literally. I wonder what is so terrifying about Down's syndrome that makes this bedroom scene unimaginable for parents who are diagnosed in pregnancy and feel they have no option that to terminate? There are many statistics to say just how many babies with Down's syndrome are terminated in the womb. I'm not going to repeat them here because too many times people with Down's syndrome are reduced to a statistic. Quote the statistics often enough and we take away the character of the person, the personality, the unique individual, the humanity. When I look at Emily I don't see a statistic, I see a beautiful human being who is loved dearly and who loves unconditionally.

And even as I write (yes I'm doing it the old fashioned way with pen and paper) - as I write and think and ponder, tears well up in my eyes. Just to imagine life without Emily takes me to a dark place; darker than the view outside as dusk is replaced with a late winter's evening. What if we had not had the joy of knowing this beautiful young woman? What would this room look like? Probably a guest room or full of storage boxes and things we'd bought but never really needed or used.

But the tears in my eyes and the shiver down my spine are for those parents who miss out. For their babies who are never born. And the beauty of living in the UK is that we have freedom to choose. Every day we make many choices - what to have for breakfast, what clothes to wear, what car to drive, what job we have. Life choices - should I get married? Should we live here or there? Who's parents do we go to for Christmas dinner? How many children would we like? What do we do when we're told there's a risk our unborn child may have a disability? May have Down's syndrome?

Stop.

"What? That's not a choice I expected to have to make." Shock. Unexpected question. Uncertain future. Still in shock. "But I know nothing about Down's syndrome!" Choices. Decisions. Head spinning. Counselling. Still in shock.

The ultimate decision is placed into our hands. The power of life and death. No-on is prepared for this. What are you going to do? Continue with the pregnancy and face an uncertain future or terminate? Life or death?  Let me say right now I sit in judgement over no-one. I am far too aware of my own failings to judge another. I know I make choices that sometimes hurt others. But why do those frightened expectant parents choose termination rather than to proceed with the pregnancy? I believe there's an expectation within society that we can't bring an imperfect baby into this world. What hypocrites we are! Who is without fault? Which one of us is perfect? Yes, there are many wonderful people out there but I have yet to meet anyone who is perfection personified. So why dare we not bring an imperfect child into this world? It is entirely plausible that most people spend longer gathering information on a car before deciding to buy it than they do about Down's syndrome before deciding to continue or terminate a pregnancy.

Does being able to identify Down's syndrome in the womb give us the authority to terminate that life? In 21 years I have never met a parent of someone with Down's syndrome who has told me they wished their child had never been born. Science still cannot find the trigger for Autistic Spectrum Disorder (ASD) but when it does, will that be another choice offered? I certainly hope not.

Look around the room.

I forgot to mention the full length mirror on the wall. As I stand in front of that mirror I see the reflection of someone who has seen the highs and lows, the challenges, the difficulties, then joys, successes and the pride of being Dad to three wonderful children. Some of the issues we've faced as parents have been extremely difficult and completely unrelated to Emily. Some of our greatest challenges as parents have had nothing to do with Down's syndrome. Thank God there's no test in the womb for those things!

None of us are perfect

Whilst none of us are perfect, we are human. And our humanity accepts one another's faults, imperfections, our fears, weaknesses and failures. We do this recognising that others are overlooking our imperfections in their humanity. And we cope, we improve, we support. We learn from one another. We teach, we educate. We bind it all in love.

The irony is that I learn more from Emily, and others I've met who have Down's syndrome or other "disabilities", than I've learned from anyone else. The trouble with pre-natal testing for Down's syndrome is that you only ever get to find out about the extra chromosome. It reveals statistics. But it doesn't reveal the personality, the character or the life of the person with the extra chromosome. All people with Down's syndrome are individuals, unique, just like you and me.

Of course, there are things that people with Down's syndrome find difficult. I'm not suggesting for a moment that life is without its challenges. But there are things I find difficult too. There are unexpected challenges which arise whatever the abilities of our children, and the same is true even if we don't have children.

I urge healthcare professionals everywhere to ensure that balanced information is given upon detection of an increased chance of having a child with Down's syndrome. I say chance rather than risk, as risk is often related to something bad. The language we use often leads others towards certain conclusions:
Risk = Bad = Terminate

Wouldn't it be amazing if, along with the counselling and conversations which take place during the time after initial screening and diagnostic screening, parents were shown a picture of Emily's room?




18 comments:

  1. Hi Emily's dad,

    What a great post, I am a mum to a 7 month old little girl with DS. It's reading parents blogs like yours that gave us the courage to continue with our pregnancy after pre-natal diagnosis. Our daughter is beautiful and we are looking forward to sharing her childhood journey, just as we are with her older sister. Keep getting the message out there as the medical support is severely lacking, we were given a 1 page print out from the internet about DS from our hospital and that was it!

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    1. Hi Claire, well you made me cry....in a good way. It's for you and your little girl that I do what I do. I don't care about stats of how many people read the blog, I want to know it makes a difference so thank you so much :)

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  2. I have tears reading this. I too often feeling the gut-wrenching pain of imagining life without Natty, of what might have been had we followed this advice or that test. Everyone should read this post. #NHSChangeDay

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    1. Thank you Hayley. I had tears writing it. Some things are worth the tears though aren't they :)

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  3. Perfect. I can't applaud this post enough Paul. Thank you for sharing.

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    1. Thank you Tom, you are always such an encouragement :)

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  4. In floods! I honestly don't know what would have happened if we'd have known about Ella's extra chromosome during pregnancy. All I know is that she was meant to be here, is so very loved and I couldn't imagine her any other way. I think a lot about pre natal tests, negativity from health professionals, language used lack of information given and the many stories that essentially reveal a complete disregard for human life. I am hopeful things will change, but know this will take time and perseverence. Thank you Paul - this is a post well worth sharing and reading and I love your pledge too xx

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    1. Thank you Amy. Ella is blessed to have you as her mum and you are blessed to have her as your daughter. It's scary to think what if....but together I know we'll change the world for the better :)

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  5. This is so lovely. We had the counseling at 12 weeks when everything pointed to a chromosomal abnormality (it is a different unknown syndrome) and it is made too easy to end the pregnancy - to undo the mistake! We refused further testing and three years later i couldn't imagine a life without my boy - can't wait for the next 18 years to get to that room. Amazing post xxx

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    1. Well done Alison, I applaud you and I know that you made the right decision and your life will be all the better for it. Enjoy the "now" times :)

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  6. Fantastic post. Thank you. I cannot imagine life without either of my daughters, and as others have already said, thoughts of what we might have done had we had a pre natal diagnosis are scary beyond belief. Our initial reactions were based on outdated, inaccurate misconceptions. I believe everybody should have a choice but it is only really a choice if a true representation of those choices is given. My husband and I were discussing the high rate of terminations after screening recently and were overheard by our eldest daughter, 9, not DS (note to self - some conversations must take place out of ear shot). I found it so incredibly difficult to explain to her. She asked "But why would you not want your baby because they have Down's Syndrome". I replied "Perhaps, because you are afraid", and her response was "Why?". Taking a look at that bedroom, you would indeed ask, why would I not want this?

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    1. Hi Yasmin, thanks for your comments. I'm making my mission to change those old outdated beliefs and misconceptions that still exist. Aren't young people great, just say it as it is :)

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  7. Thank you!!!!! Such a great blog I can't wait til my little girl is big enough for her own room, and I can do that! Just wish everyone reads this !!! Each person makes the world a better place and my little girl brings smiles wherever she goes! I wish people would stop trying to want perfect, nearly every time the really beautiful things aren't perfect that is often what makes them so beautiful and unique!

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    1. You are absolutely right - the beauty lies within each one of us, it's who we are and what we were created for. The imperfections in us releases greater beauty in others! :)

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  8. Wow! Thanks so much for this post! I enjoy looking around at my son's things and thinking about how he's grown into such a unique individual. I'm sharing your image everywhere! LOVE IT!!!!!!

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    1. Oh wow, thank you Stephanie so much for your encouraging feedback. Keep looking at life through your son's eyes - you'll be amazed! :)

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  9. I can't find a "like" button, but if I could I'd want to like it over and over again. I have done the "sitting in my child's room" thing just to see what life at home looks like for them. And I love your thoughts about the decisions involved in parenting a special needs child. Thank you for a beautiful read this morning. -Amy

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    1. Thank you thank you Amy :) Keep going for a sit in your child's room, it's amazing. :)

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