October is Down Syndrome Awareness Month and to me is pretty important. As you may know October is also Pregnancy and Infant Loss Awareness Month and for me, both go hand in hand.
Last night a documentary was shown on BBC Two called A World Without Down Syndrome, a documentary that I’d been dying to watch and excited to see how DS was portrayed by someone who actually lived with DS rather than people who knew very little about the condition. It’s about time the world saw just how this condition changed lives but not in the dreaded way the media make it out to be.
I couldn’t and refuse to think of a life without my brother in it. Since we were small I’ve looked after him, protected him, thought of him as more than a brother, he’s my friend too. My parents did not know he had DS until he was born, and to this day they have been honest in telling the world that if they had known they don’t know what they’d have done. I’m grateful that they didn’t know. More grateful than most people could imagine. This doesn’t make them bad people, it meant that DS was unheard of. The condition wasn’t spoken about (much like pregnancy and child loss still is now!) and people were afraid of what that meant for their child. I thought that this idea of DS being a burden had changed however was shocked to hear that 9 out of 10 people who are given a positive diagnosis then terminate their baby. How misguided they have been.
When I was pregnant with Jason, my brother’s DS didn’t really get taken in to account as it’s unusual for it to ‘run in the family’ however we had the screening test just to prepare ourselves if the risk was high. The screening came back low and we never thought about it again. When we found out Jason had DS we were sat in a hospital room discussing his post mortem. I couldn’t believe my luck that I’d also given birth to a child with DS, only Jason wasn’t as lucky as my brother was and didn’t survive. I did not and do not see Jason’s DS as being a burden. Many people have told me in the past year “It might have been for the best.” “You’ve done your share of caring for a child.” “Maybe someone up there decided you didn’t need another person with such complex needs in your life.” “He wouldn’t have been the same as your brother, maybe it was an escape.” All these words kill me. How wrong people have been. Jason AND my brother have never been burdens on me, I’d considered myself lucky to be carrying Jason any way but him having DS means he’s even more special to me. I don’t know whether his DS would have been more complex as my brother’s or whether it would be like watching him grow up all over again. That chance to find out was taken away from me and I’ll never know. I can just sit and wonder what life would have been like with my baby boy who just happened to have Down Syndrome.
I’m afraid to say I managed to watch maybe 5-10 minutes of the documentary before I was completely overwrought with grief that I began to cry uncontrollably. I realised the fact that people are still terminating babies just because they have Down Syndrome was just too raw for me. I would never have terminated my baby, regardless of whether we knew he had DS or not. I could never justify that being an option and the fact that Jason was stolen from me without me seeing him alive and seeing his beautiful almond shaped eyes and chunky tongue was too much for me bear and I couldn’t watch any more.
I hope any one who reads this blog can watch this documentary as I believe it’s needed to find out that people with DS are some of the most kind, caring, wonderful people you could ever meet. I’m not denying they can be hard work, but isn’t everyone at times? Yes they may have other conditions/issues but the love they provide is worth all the pain and hardtimes.
I would give ANYTHING to watch my son grow up and hit those milestones just like any other baby would. I would give my last breath to see the colour of his almond shaped eyes. I would give my life for him to have his. And yet others are given the option to terminate (right up until the very end of pregnancy) because they are too ignorant to know what DS can entail.
I know I am biased but life with someone who has Down Syndrome does not consume your entire life. For me, it’s made it far better than I could have ever imagined.