Some time last year I wrote a blog about whether I was selfish to bring Sophie into the world. I concluded that I wasn’t; she was having a ball, we were a little greyer than we used to be but were also having a ball, and that was that. Things have changed horrifically since then. Sophie isn’t here any more. She stopped having a ball and so did we.
Whether or not we should be aborting babies with Down Syndrome has been up for a lot of discussion again recently. Most people say that I should just ignore people who have ignorant opinions, but it’s hard to not take it personally when someone is saying that your daughter wasn’t worth having. So once again it’s got me thinking. I’ve seen a lot of amazing responses from people who have children with Down Syndrome that are pretty healthy and doing really well. While running the risk of just repeating what I said last year, I’ve wondered if I re-read my blogs from last year, whether I would conclude the same, knowing what I know now.
Sophie’s death is the horror story that we don’t want to hear about. In a lot of ways she is the ultimate worst case scenario for Down Syndrome, and probably an example that those saying it should be eradicated would use. Sophie dying brings home the harsh realities of Down Syndrome and the problems that having it can lead to. I’m pretty sure our family wouldn’t feature in anyone’s success story when talking about Down Syndrome.
So was I selfish to have Sophie for the short time that I had her? Or would I have been kinder to have terminated her life before she was born, meaning she wouldn’t have had to go through what she did, and also helping to “eradicate down syndrome” like Iceland have done? Here’s some of the reasons why I think not:
Sophie made us, and our family, more conscious and understanding of disability. We know what living with a disability is, we know the heart ache and the joy that it can bring, and I think we are all a lot better equipped to deal with disability in the future. We have become more aware of ways in which we have been ignorant in the past, and Sophie has forced us to rethink the words we use and the attitudes we have. I know this isn’t just limited to family; I know so many people have changed their attitudes and actions because of who Sophie was.
And speaking of family, Sophie has melted the crankiest among us in a way that another baby wouldn’t have (not mentioning any names, Jeff).
The time Sophie was here, she did have a ball. There were times that she didn’t, but most of the time she loved life, and grabbed it with both hands (clasped together and in her mouth, obviously). She laughed in the face of adversity, and taught us to do so too. She made us happy and complete, because she was happy and complete with us. Taking that opportunity away from her before she was born because we thought she and us might not have had a decent quality of life would have been selfish. Sophie’s quality of life was the best, and she improved all of ours.
Sophie needed additional care, just like many others who don’t have Down Syndrome do. We are very lucky that we had such a brilliant NHS available for Sophie. Since Sophie died, thousands has been raised and donated to Alder Hey and the British Heart Foundation in her memory. That money will go to helping your child if they need the NHS, or research that could help your family member who has a heart condition. You’ve got Sophie to thank for that.
Sophie made me more patient, more tolerant, and taught me to enjoy the moment I’m in. She changed my opinions about the things that really matter to me, and although at the moment I’m a mess, I know that I will be a better person because of her once these storms subside. She gave me a purpose by being her mum & her advocate, and I will continue being her mum and living out that purpose by advocating for those like Sophie until I die.
For the time Sophie was here, she lit up our world with a light that will never go out. The reason we are so broken now is not because she had Down Syndrome and it was hard work: it is because who Sophie was (including her Down Syndrome), was so radiant and beautiful and special, that this world now seems so dark without her. What a dimmer life we would have had if we had chosen to never know that joy and light in the first place. I am confident that if we can get through this grief, that we will make Sophie’s life a lasting legacy by the way we live ours, because of who Sophie was.
So as someone who has experienced Down Syndrome, the brightest and the darkest side of it, I can honestly say that I would do it all again in a heartbeat to experience the light that our girl brought. It wasn’t selfish of us to choose to let Sophie live, even though her life was short and ultimately she died. I think if someone could ask her, she would say the same. Sophie is the kind of person this world needs more of, not less of. Life was better with her, and will always be better because of her. So let’s stop trying to eradicate the Sophie’s of this world.