When Beth was born I was horrified. I thought my world was over.
The family I imagined I was going to have – three gorgeous little girls – was completely destroyed by my daughter’s diagnosis of Down’s syndrome. I remember thinking that birthdays, Christmas and family holidays would all now be ruined by Beth’s presence; her Down’s syndrome would somehow contaminate it all.
My book Hole in the Heart is a graphic memoir about how I coped with the shock of that diagnosis and the difficulty of our journey as a family to accept and love her.
When Beth was four days old, we found out she had a serious heart condition that needed surgery if she were to survive. I was already reeling from her diagnosis and this pushed me very close to the edge. I found it almost impossible to love her, because of her disability and because I couldn’t allow myself the pain that I would have to endure if she didn’t survive. Our doctor told us that we might be comforted to know that she might die before us.
Beth survived the operation, and as she started to grow, I began to understand the strength of my own prejudices towards mental disability; the ill informed opinions and preconceptions I had about Down’s syndrome; opinions that I had no idea I held until I had to face the reality of my own child’s mental disability.
I began to learn about Beth as a person and what she could do, rather than what she wasn’t going to be able to do, and I became acutely aware of how insensitive attitudes towards disability were.
As well as dealing with my own prejudice, I started to feel that it was very important to explore and challenge attitudes and prejudices of the people surrounding me, the health professionals and teaching staff I was dealing with every day.
In the book I try and talk about the language of discrimination in a humorous way and mock my po-faced stance, but for a while, I was almost permanently angry. I still hate it when people say ‘a Down’s person’, rather than a ‘person with Down’s syndrome’. It means that you are not describing someone as person first and foremost. I’m a bit more tolerant than I used to be.
As parents, we often put ourselves through hell, seeing our children’s success or failures as a reflection of ourselves. Having a disabled child, I think I had to try a bit harder to ignore the part of me that blamed myself for Beth’s disability, and to stop seeing that as my reflection. It took me a long time to see her as an individual and not as a set of problems – to see her and love her for herself.
What has been the real highlight for me is the incredibly touching emails from people who have not only been in a similar situation, but also parents of children with autism who have gone through insensitive diagnosis, and parents who have experienced a lack of control or isolation in the educational or health system.
When I was drawing the book, I imagined that I had expressed something unspeakable. I worried that I would upset other parents, so it’s been especially wonderful receiving such positive responses.
‘Hole in the Heart: Bringing up Beth’ by Henny Beaumont is published by Myriad. You can purchase the book here