Diagnosis Down's

Mia kisses her unborn sister.

Today I heard that a friend of a friend of a friend on the other side of the world is reading my blog.  


She and her husband have just received the diagnosis that their beautiful unborn baby has Down's Syndrome. I hear they are finding strength in our photos and words and are moving forward with the pregnancy. It's hard to begin to describe how I feel about this...other than just a huge sense of responsibility, an enormous amount of love sent to this couple during this time of devastating shock and a deepened urgency to let a wider audience see the realities of Down's Syndrome today.


I think back to our pregnancy, and wonder how we would have felt and reacted had we known for sure that our second baby girl had Down's.  I know many couples who say the ante-natal diagnosis gave them time to get over the shock before meeting and bonding with their baby.  I hold these people in high regard, how strong and firm in the knowledge of their own strength they are.

I hate to think what might have happened had we known.  I might have panicked, wanted that imperfect baby out of me as soon as possible, disgusted by her imperfections.  Perhaps I would have wanted to keep the little life that was moving inside of me and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Who knows...

But I am not, and would never be one to judge any decision that any mother makes.  We cannot understand another's path unless we have walked in their shoes, understood their circumstances and family backgrounds.  The same goes for those who feel they cannot cope with Down's Syndrome when it surprises them on birth day, and choose to offer their child up for adoption.  I say with honesty that it crossed my mind back then, and had it not been for supportive family, friends and community, who knows what fallout we would be suffering now.  A fallout that would last a lifetime.

All I can say, with a smile of pride on my face from where I stand now, is that Down's Syndrome alone is not a reason to terminate a pregnancy or give away a much wanted child.  We must not judge, but support.  We must dispel fear with love and humour.  We must enlighten the ignorant with beautiful examples of our fully rounded children leading happy integrated lives.  
Live, love, laugh, learn, eat, drink, dance, make friends, enjoy nature...what more do any of us want out of life.

But I refuse to provide a sugar-coated Disney version of Down's Syndrome.  There will be worries.  It will be hard work at times.  Some of the waters you cross with be unchartered.   You will wonder at each turn if you have taken the right routes.  Most people will be supportive but some will patronise your child.  Allow yourself time to talk to them all regardless.   
There will be illness, perhaps surgery, but you will find an inner strength to cope, the same way you would cope if your spouse  or any other child became ill.  You will meet amazing parents who have done the same along the way, and you will share a glance that instantly says "We have both broken through the glass ceiling of life, haven't we."
Others won't 'get it', but you will smile and hope they stay by your side regardless.  Your child will excel at some things and really struggle to learn others.  Just ask my husband what I am like if someone throws a ball at me, and he will tell you that we are not all good at everything!
There will be days when the stubborn behaviour makes you want to scream.  But that is just parenthood.  

A (thoughtless) pregnant mature Mum once said to me, with Natty in my arms, "I'm having all the testing because I wouldn't have time for one like that."  Well I guess if you haven't got 'time' for a child like Natty, then you haven't got time for any child.  Full stop. 

But listen - all children are different.  Some are prettier and cleverer, some are whirlwinds and others are shy, some are loners others thrive on attention.  At the end of the day, each child with Down's Syndrome reflects it's family, looks like it's parents and gives back to life what has been put into its upbringing.  A child with Down's Syndrome is more like it's family than other children with Down's Syndrome, although there will be some similarities.

I wish I had known all this when Natty was born.  And this is my simple message to those just starting on this journey.





8 comments:

  1. What an honest opinion ,I totally agree. There should be no judging. The pride of having got 'this far' and having the privilege of seeing progess should never ,NEVER let a parent judge another for making different decisions EVER.
    There by the Grace of God go I , that's what I say.
    If you are reading Hayley's blog and wondering what to do .Listen to your heart and your loved ones what ever you decide it will be the right decision x

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  2. The fact that the thought of giving your child up for adoption entered your head says alot about you. You brought a child into the world and it's your responsibility to love and care for that child. I was in shock when my child was born with ds but it only lasted a few hours. The realisation that this child is mine and depends on me I bonded so tightly with her I wouldn't change a thing. So what if she has a disability I just love her even more.

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    1. OMG what a stupid arrogant thing to say.

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    2. Dear Anonymous
      I wanted to respond to your above post as i am feeling a lot of compassion for you and the shock you express experiencing at the birth of your own baby with DS. I have had the great privilege of being Hayley's and Bob's doula at the birth of both their wonderful daughters, and i count myself lucky to be one of their friends, so from that place my view is coloured, and i don't want to hide that from you.
      What i feel i'm hearing from you in your reaction to the mulitude of emotions and feelings that can and do accompany the birth of a child with complications of any kind, and so honestly shared here by Hayley, is judgement rather then understanding. It takes great courage to not leave out any actions and feelings you might not feel so proud of in a personal blog, especially one about the intimate time of the birth of your baby where things were not what you had hoped and prayed for, and which Hayley is not only expressing with such clarity and honesty, but which must be so recognisable for you yourself. My reflection to you is that the fierceness of your reactive opinion indicates that you hold shame around feelings or thoughts you may have had yourself in those days and weeks of coming to acceptance, of adjusting to the shock of finding your child has DS and all the worry that went with that. I would love to invite you to give yourself understanding and forgiveness if this resonates with you. Strong feelings around difficult emotions or judgements about choices of others in similar positions to your own are almost always about a lack of compassion for the self. So i offer you mine, in friendship and in respect for your journey as a mother.
      With blessings
      Katinka

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    3. Katinka, you beautifully said what I was thinking deep down. I am glad if she bonded with her daughter quickly, but the anger of the comment leaks a different message.
      I have received many beautifully written messages from ladies thanking me for making it OK to accept the troubled feelings they felt during that early 'shocked' period. We all have them to varying degrees. That's normal.
      So dear Anonymous, whatever you feel or felt was OK, and I hope you can grow to accept and have compassion for others around you.

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  3. The fact that Downs Side Up has admitted to considering less 'acceptable' options says a lot about her.

    Reading this blog I find the them to be one of complete lack of judgement and admitting that there are hard times and yes, there will be dark thoughts and that there is no shame in that. At the risk of sounding like an extract from Harry Potter, it's our choices and actions that we should be judged on. I am sure most people, when faced with a challenging situation in their life, have considered a less than ideal path, if only for a second.

    Downs Side Up not only made the choice to keep her child but is going on to raise awareness, increase acceptance and dispel myths about Downs Syndrome, not just for those who have it, but for everyone it impacts - professionals, family, siblings, friends, strangers. Surely she should be applauded for her actions in all this rather than judged for a fleeting thought five years ago at what was obviously an emotional and wrenching time? Also reading the blog I don't think anyone can think Downs Side Up loves her daughter any the less.

    A mother's bond with a child is not always a given, for children born with and without difficulties, some people need more help than others and blogs such as Downs Side Up can help people realise they are not alone/ wrong/ bad.

    As I believe Downs Side Up says in one of the posts, we shouldn't judge unless we walk in someone's shoes and as every single person's circumstances are different, even with having a child with DS in common, none of us are the same.

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    1. Thank you. I believe my blog serves to help all mothers who have encountered Down's Syndrome, whatever their experience of it, whatever path they decided to take. We are all here for each other and that includes 'Anonymous' if she ever needs support in the future. I hope her comment did not offend anyone other than me.

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  4. Thank you for sharing your story with such openness and honesty. It takes bravery to be honest but it is also healing I think to understand and know yourself and see where feelings and decisions lead. I suspect that most people in the same situation would have moments (or more) of panic and anxiety about whether they can cope and it's blogs like this that help people in those situations because they can see that they are not alone and that others feel the same way they do. That's so important and is one of the beauty of blogs and sharing life stories. Thank you.

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