I seemed to have shocked a few people.
Not on purpose,mind you – that’s never been my style, really. But by choosing to openly share (which is my usual style) our decision to not test for Down Syndrome with our fourth baby, at my ripe age of almost 40, I inadvertently seemed to have ruffled up some societal feathers.
Feathers, which honestly I don’t think should even be featuring on any ruffling scale anyway. But there I was, nonetheless, face to face with expressions of disbelief mixed in with a touch of judging. Thing is, there seems to be a misplaced understanding that by foregoing these tests, I’m being irresponsible. In that, how will I ever be prepared, “should the worst happen.” And I’ve got to be honest, that’s not striking a chord with me at all. I get that we all are different in our ways of thinking and dealing with a situation, but trying to impose and/or judge me with that limited way of thinking was really surprising to me, as if I was some sort of irresponsible mother.
First things first, I didn’t choose to not take the tests because I’m against having as much information as possible about my child – which is, in fact, quite the opposite of me! If you knew the intense nerd burger that I am, and the research geek that I transform into for anything I want to learn more about, you’d know that is the furthest thing from the truth.
I declined it because, as it became apparent to me, the whole point of these initial tests is to determine whether or not you will terminate the pregnancy. And for us, that is not even a question. It has never been. Never will.
Now whilst it will always remain the personal choice of each parent to make – one that should remain judgement free – but for us, personally, DS is absolutely not a reason to terminate. And it actually comes across to me as a very odd and cruel understanding that because of this genetic condition, this little life is now deemed as “less than”(?) That now, due to an extra chromosome, their life is less worthy?
I struggle to grapple with it, and it’s a thought that will probably remain unfathomable to me…especially knowing what I do now.
Yet many parents do choose to terminate to this day. And whilst I’ll maintain that this will always remain a personal choice that each parent needs to make, I’ve got to say that more often than not, I think that fear is often nicely nestled right behind those choices. Fueling it, in fact. And if you ever listen to the glaring and often dooming opinions that so much of our society has to spew about down syndrome, they seem to have it all twisted that this “condition” is devastating, tragic and armagedon-esque, that it’s no wonder that these parents are, so often, left to feel trapped and sullen; and like termination is their only choice.
Where in reality, it doesn’t have to be.
But the language that society chooses to use with respect to DS, is often one of such doom and darkness, that it’s almost not surprising that many parents have been conditioned into thinking that its normal protocol to terminate these babies…to deem these little lives unviable. Unworthy.
And whilst I’m not for one second saying that it’s an easy journey for any parent or family who has a child with down syndrome – for I have no delusions that the range/spectrum of DS is great. I can only imagine the impact that it would have on the family. And that as someone from the outside looking in, I would still have so much to learn should the good Lord choose that path for us – I can also not pretend to happily subscribe to the act of discarding a little life that had been sprung within me. That this little soul who chose us a family; Who chose me as their mother would be denied, merely because I couldn’t see past a “diagnosis” handed over to me, and lathered in pity and gloom. (as opposed to hope, education, support and positivety)
But in order for those perspectives to be inspired to change, the language that we as society choose to use wrt Down Syndrome or special needs needs a dramatic revamp. But it has to start with us. Each of us. And a willingness to want to see the world more inclusively.
Now, I know Im not special, nor the only one to think like this. But rack it up to my few years experience in interacting with special needs children, as a child myself through the one-to-one events of the Junior Chambers of Commerce (Rotary Club). Or perhaps it was watching my aunt dedicating her whole existence to lovingly and patiently tending to her son with extremely special needs (thanks to an aneurysm her boy had suffered at a very young age) till his very last breath. Or perhaps it’s thanks to the great work that people like Sheri Brynard and Kelle Hampton that have, for me, shed so much light and awareness on the matter. That have, in their own unique ways, helped lift the dark shroud that this genetic condition has so often been packaged and boxed into.
Who’s to know, maybe me accidentally stumbling upon their work (Sheri, Kelle and the like) have all been serendipitous for what our future with this baby holds. Or maybe not. Either way, I am appreciative of how much they have contributed towards broadening my perspectives on the matter.
I know that there is so much I would still need to learn about Down Syndrome and special needs in general – I make no bones about that- but I do thank all the beautiful souls out there, who tirelessly work to bring greater awareness about the topic, and about the support and options that exist today. Whether it’s through their writing, their doing, or the way they choose to live their lives and set examples for us all. We’ve come so far from where we used to be. And it is – I believe- because of those many good souls out in this world and their passion, that empower people like me and you to better understand this world and all that it includes, and to make more informed choices that are not shackled with fear.
So yes, we have declined those tests without a stitch of regret nor angst. There is no subtle dread nor fear in these hearts of ours. But there is certainly a sense of understanding of the support and resources that are available to us, should we be chosen to be a part of “the lucky few”. Now whilst there are many who choose to do the test not for termination reasons at all, but purely because they would feel better prepared should their child have that extra chromosome – please don’t get me wrong – there is absolutely nothing wrong with that. All the power to you for doing what you know and feel is best for you and your family. But that was simply just not our personal position for this pregnancy. This was our choice.
And this baby, no matter the amount of chromosomes he or she may have, is already SO loved. Can’t wait to meet you, darling! X
By the way, if you didnt know, Sheri Brynard was was the first person with down syndrome to get a tertiary qualification here in South Africa. She truly is an inspirational story, with respect to how she changed the perceptions surrounding down syndrome individuals right here in SA and, apparently around the world.
Now, for anyone who may be looking for more information on Down syndrome, advice and support particularly here in South Africa, you can contact: (Also, if you know of more resources that the readers could benefit from, please feel free to share them here below in the comments)
Red Cross War Memorial Children’s Hospital
Office: 021 689 1519 or 021 658 5526
Toy Library: 021 658 5610
Fax: 086 501 5785
Down Syndrome South Africa
Telephone: 0861 369 672 (0861-DOWNSA)
Fax: 011 252 5323
Down Syndrome Association Western Cape
Telephone: 021 919 8533
Fax: 021 919 8266