Hearts over heads

Earlier this week, Katie Price came under media fire for saying she would have aborted her son Harvey had she known about his disabilities when she was pregnant. Perhaps her honesty shocked a lot of people but living in a country where over 90% of pre-natal Down’s Syndrome diagnoses end in abortion, to take one condition as an example, we know that Katie isn’t alone.

Perhaps Katie’s point could have been articulated better (and fellow mum to a disabled child Stacie Lewis, who I feel privileged to know, wrote this wonderful piece in The Guardian), but when I heard what she had said I knew exactly what she meant.

She meant that she would have been afraid.

That she would have ended her pregnancy based on medical prognosis, ignorance and fear of disability, not knowing the characterful, sweet boy her baby would become. Because, in those circumstances, all too often, that is all a mother has.

Since Orange arrived, I’ve met and become friends with a lot of other mums of disabled children. A complete cross section of society that I would not have met otherwise. Different backgrounds, different views, but united in our experiences of being parents to disabled children and the world in which we are raising them.

We all adore our children. Knowing the little people that they are and the love we have for them, I don’t know a single parent who would wish to turn back time and experience life without their child. That thought is as unpalatable to us as it would be to any parent. Contrary to what some of society may think, our lives would not be better without our disabled children in them.

Before I had Orange I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love. Being frank, I would have believed it to be the end of any life worth living. I would have done anything to avoid it.

But I find myself in an uncomfortable situation in discussions like this because I don’t know any other mothers who have experienced quite what I have and it’s not something I talk about often. About a year before we had Orange, I had a termination. We were told that our baby had heart conditions that were ‘incompatible with life’ and that there was ‘very limited chance of survival’.

Before we even knew the underlying diagnosis (Down’s Syndrome) that had caused our baby to be so (apparently) desperately and terminally unwell, I had decided to end the pregnancy.

Because I was afraid.

Afraid of giving birth to a dead baby but even more afraid of what might happen if he lived. I justified my decision based solely on what the medical prognosis had told us. That my baby was probably going to die anyway and if he survived the pregnancy his life would be short and painful.

I was afraid. But I thought I was doing the right thing. For him, for us, for Bea.

If we had never had Orange, I would still believe that the decision I made on 29 January 2010 at four o clock in the afternoon was the right one. And I would never have questioned that what the medical prognosis told me was correct.

The tears I cried as the theatre team at St Thomas’s chirpily asked me ‘what procedure are you in for?’ while they placed the needle in my hand and the deep relief I felt as the gas washed over me and turned off the world, and drowned my fear for the sick child inside of me, are etched in my heart forever. It felt wrong, in my heart. In my head, I believed I was doing the right thing.

And now?

Now I question that medical prognosis that drove me to have that termination. Now I know too many children, alive, and beating the odds their parents were given. Children, who by all medical accounts should be dead. I question the decision I made. Now I am no longer afraid of disability and now I know that medical prognoses aren’t always right, I wish I had let nature take us on whatever path life had in store for us.

Now I count my blessings for Orange. I am thankful every single day of my life that I didn’t know when I was pregnant with Orange that he would have disabilities. Because again, I would have made a decision with my head, not my heart.

A decision based on scary lists of symptoms with big medical words like hypotonia, nystagmus and status epilepticus.

A decision based on what I thought I knew about the hardships of disability with no knowledge of the sweet, gentle soul I gave birth to, the easygoing and peaceful baby he was, the cheeky Peppa Pig obsessed toddler he became or the cute and funny almost five year old he is today, with his surf dude blond hair, a divine appreciation for the ridiculous, lover of cuddles, Bert and Ernie, rugby and bananas.

A decision based on things I had no direct experience of but my preconceptions would have told me I couldn’t cope with, not allowing even a chink of possibility that life and love would carry me through and leave me stronger and happier on the other side.

A decision based on what I might have mistakenly thought would be best for Bea, with no knowledge of the fierce sibling bond they would develop and the adoration Orange has for his devoted sister.

A decision that, for me, I now know, in both my heart and my head, would have been the wrong one.

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18 Comments

    • KatherineKowalski March 4, 2016 / 12:01 pm

      Thank you Hayley, it’s taken a while to feel ok about writing this but it’s been waiting in my head for years xx

      • Hayley - Downs Side Up September 9, 2016 / 10:35 am

        I think it is so important to share, and you do so very beautifully. Much love x

  1. Stacie Lewis March 4, 2016 / 11:26 am

    Wow. Katherine this is such a heartfelt, raw piece. I am really in awe of you. I didn’t have your experience, but I did worry over how honest I could be in my article. You say it all here, I would argue better than I did. That session in Parliament was really enlightening to me. Knowing other women had similar experiences to mine and the same depth of love and willingness to fight for our children, just standing there next to you and the others there gave me strength. Best wishes x

    • KatherineKowalski March 4, 2016 / 12:00 pm

      Thank you Stacie and I absolutely agree with you about that day at Westminster. Together we are so strong xx

  2. Vicky Robinson March 4, 2016 / 12:19 pm

    Thanks for sharing. What a beautiful little boy he is.
    My eldest has ADHD & high functioning autism and after a sickly start with ENT problems at 1-2yrs, he seemed perfectly healthy. Fast forward to 13 and he developed a very rare illness for children, Primary Hyperparathyroidism. 2 bodged operations, followed by a “successful” one to remove the tumor/over-active gland, my child is still very ill and hasn’t been in school since 2013. I now have a long term sick and disabled child. I love him to pieces, I didn’t choose this path for him, it’s been hard for him and us, but he is our precious son and I will fight his corner all the way. It also shows that even if you give birth to a seemingly healthy child by all pre-natal tests, nothing guarantees that things will stay that way, as an accident or serious illness can change everything in a moment.

    • KatherineKowalski March 4, 2016 / 12:46 pm

      Absolutely! You can never know what life will throw at you and love carries you through. Thank you for sharing your story, hugs and love to you and your son, I don’t know much about his condition but I hope there is a chance of his health improving and that you are able to get the support you need xx

      • Vicky Robinson March 4, 2016 / 2:27 pm

        Thanks.

  3. Kerry Fender March 4, 2016 / 1:54 pm

    Very moving and heartfelt post. We should never condemn a decision taken in ignorance compounded by a lack of accurate information, biased advice and societal prejudices, not in others or ourselves. What we can do is share our experiences, so that in future prospective parents will know that there is another way if they wish to take it – that if in their hearts they wish to continue, then it is possible to ignore those who are supposed to be ‘experts’ … And still to have a wonderful life. Medics told me my child would have a learning disability and maybe some physical issues, by they never warned me that he would have such a knack for comedy timing that he would crack me up several times a day, just when I needed to look stern and businesslike.

    • KatherineKowalski March 4, 2016 / 2:56 pm

      He sounds awesome Kerry! And that’s just the thing – having a child with disabilities doesn’t mean that all those lovely (and not so lovely!) parenting moments, feelings and experiences are replaced by a list of symptoms. It’s just different. Not less. Thank you for your comment xx

    • KatherineKowalski March 4, 2016 / 8:50 pm

      Thank you Rainbows xx

  4. Rob Skinner March 4, 2016 / 8:45 pm

    A wonderful, inspiring post, Katherine. You do what all great writers do: you speak from the heart. You challenge assumptions and make your readers think. Thank you!

    • KatherineKowalski March 4, 2016 / 8:49 pm

      Thank you for the lovely comment Rob! Blogging is a powerful medium, I just hope to do my little boy and other children with similar difficulties justice.

  5. Polly March 5, 2016 / 1:25 pm

    Thanks a lot for this. I’ve been through something very similar but without the joy of Orange on the other side. Thanks for acknowledging the fear that motivates these kinds of decisions. I’m struggling to face up to this myself though I know it to be true. Thanks most of all though for the hope of a brighter day, one day.

    • KatherineKowalski March 5, 2016 / 10:12 pm

      Give yourself time and space. It’s so tough but you will come through it xx

  6. Bev March 6, 2016 / 4:51 am

    I getcha. I was offered a termination at 31 weeks and signed something that said I understood all the issues my baby could have. I had no idea – I’m not medically trained. The first year was hardest but I have an amazing child (I have 3 amazing kids) and I know they ‘had’ to ask but seriously what I would have missed out on is unthinkable now it’s reality. If she was my first born? Who knows? Big love

  7. Corinne March 8, 2016 / 5:55 pm

    I am reading this after Hayley introduced us on Twitter, I have tears streaming down my face as Hayley is right, we did have similar experiences. I was told our daughter “was incompatible with life” and we had a termination. We found out she had Edward’s Syndrome, she probably wouldn’t have lived but I do wish we’d not been so rushed for a decision.

    I have a slightly different experience in that I have experience of adults with disabilities and it didn’t scare me, however I do understand how it could. When we were told our next baby would have disabilities there was never a chance we would terminate, we knew he had a fighting chance. He’s now 2 and a half and doing brilliantly, there have been challenges and there will be more but I could never regret our decision. If we had continued with the pregnancy with our daughter we wouldn’t now have him.

    Typically certain areas of the media are choosing to misunderstand what Katie Price said, she’s not saying she wants to go back and choose a termination, she’s saying that if she knew he was going to be disabled she would have terminated because she had no experience of disabilities and she would have been afraid. I’m so glad people are standing with her and saying “we understand”.

    Thanks for the post, I’m looking forward to hopefully reading more from you.

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