Touching South Africa

So it turns out I found my way to say goodbye to South Africa, and it was sweet and it was poignant and it touched me, marked me... and that makes me happy.

There is this little place called Clarens, nestled in the foothills of the Maluti Mountains that mark a line between South Africa and the mountain kingdom of Lesotho. Its become awfully popular as a tourist destination over the last decade, and no wonder, it's pretty much breathtaking scenery and small-town feel is a haven for artists, writers, young lovers, and happy families.

But I look at Clarens through the eyes of an 11-year-old girl, or at least that's the age I remember it with most clarity. My family used to spend most holidays in Clarens at the house that my father's business partner owned in the small village. I walked the dusty streets, attempted to climb the mountains, and made good and fast friends of the local children when Clarens still had only a single restaurant, a post office and a general store. We enjoyed Clarens in the summers when it was lush and green and warm, and we enjoyed Clarens in the winters when it was one of the very few places in South Africa to be blanketed in snow. But it was the autumns that were most beautiful, with the golds, reds, yellows and browns turning the landscape into an oil painting.

I remember how much I loved Clarens, it's beauty, it's scenery, it's energy that was almost magical. Even when we used to arrive after dark, my parents knew to wake me up if I was sleeping so that I could see the glowing sandstone outcrops as they towered high above - then I knew we had arrived. In my young mind anything was possible in Clarens, no dream was too big and no day was long enough... I fell in love with the earth, the land, and to this day I feel a spiritual connection to the place, which is why a short trip to Clarens with my parents and the children felt like a homecoming... and a home-leaving.

And it was magical. And it was cathartic. And it was a rare moment in the past six months where I was actually able to sit and really drink it all in... no - I am corrected. It was more like sucking the marrow from a bone... every. last. drop. I was able to sit on the patio in the evenings and know 'this is the last time' (in a very long time) - the last time I will enjoy such majestic South African sunsets, still warming my skin as the last of the light fades. I was able to sit by the poolside and watch my boys splash around in the kiddie pool and know, 'this is the last time' (for a very long time) that they will be able to enjoy water like this, with the sun turning their skin brown, splashing and shouting Look Mom! Look at me!

Aaaahhhh - Clarens was good to me and my family, as she always has been.

A hat and redemption

As if to remind me that I am in fact doing a better job of parenting than leaving my children to be raised by wolves, the night after writing this post I sat back and enjoyed the most beautiful performance of my life.

After dinner and bath Malakai disappeared into the room and returned to where we were all sitting in the lounge, with a cap in his hand. He instructed us all to be quiet and then donned the hat and started to act as if he was riding a horse - hilarious and very cute! He then went on to pretend he was a frog, a cow, a dog and more.

Now, anyone who knows Malakai will also know that he loves to perform - he is really and truly designed for a life on stage without a single shy bone in his little body! And this after my admission on previous occasions that one of the very few things I thought I knew about Down syndrome was that people with the condition couldn't act or pretend. Seriously? What a ridiculous thought, I know - but nevertheless it was one of my previously ignorant beliefs.

And it struck me how much I've learned about Down syndrome since Malakai's arrival - sometimes I learned new things just by chance, through reading articles that I came across, books, blogs and the like. And other times - let me honest here - I 've researched obsessively into the wee hours of the morning, consuming huge amounts of information, study results or whatever I could get my hands on. This tendency to obsessively research was usually the result of not finding someone who could help me with a particular problem I was having with Malakai, and at other times a result of being told that I was overreacting about something, so I suppose on the one had I researched to find answers and on the other I researched to find redemption.

I wouldn't necessarily return to the doctor or specialist and tell them that I was in fact not breaking my child or overreacting, but I would at least be able to sleep that night knowing that I was doing my best, that Malakai's development and future was safe in my hands and that no harm could come to him because of ignorance... not on my watch.

Because you see, Malakai is precious, he is beautiful and he is wonderful. He deserves the best and he deserves to be given the best shot at life considering he's already got some real challenges to deal with.

But I digress from the performance...

So after we enjoyed watching Malakai's performance (and here's what I love so much about him) he wasn't content to just call it night - oh no. He called everyone up for their turn with the hat and he would sit in their seat and direct - sheep; dog; cow; horse... We each had a turn to wear the hat and perform to the applause of the room.

Now I don't know where he learned this version of charades from - or if he came up with it all on his own - but it was a poignant reminder of how clueless I once was, tempered with the redemption of just how much more I know (and get to enjoy) now.



 

Information-station

 

Last week we celebrated Malakai’s fifth birthday, which was a resounding success I must say! By success I mean that he felt loved, appreciated and validated on his special day – of course he enjoyed unwrapping his presents, but his face just lit the room up when we sang happy birthday to him first thing in the morning, and again at school, and again that night with family. My heart just swelled when I saw his pure joy – what a good day!

Malakai’s birthday is always a little bitter-sweet for me because it was also a day of total anguish. Instead of enjoying our little baby boy, we were enveloped in a sense of utter devastation when we received his diagnosis. I have never cried so much, and they were certainly not happy tears; although now I wish they had been.

I clearly remember that the only thing I knew about Down syndrome when Malakai was born was that people with Down syndrome apparently couldn’t pretend (which is a total fallacy by the way). Odd ‘fact’ really… Oh, and I knew it was a terribly bad thing, that my baby was somehow ‘broken’, and I was probably the one who had broken him.

Oh how little I knew then… and oh how lucky I was that a voice (eerie… yes) spoke to me in the days following Malakai’s arrival; a voice that told me that it was simply nuts that a blood test could tell me who my child was going to be. Only he could tell me that!

So it was rather fitting that the day before Malakai’s fifth birthday last week I was sent a press release about a new prenatal test for Down syndrome that is incredibly accurate and can be done at 10 weeks – so early that a termination could be done without any pain or any fuss…

Now don’t get me started on my views on ‘medical termination’ – they’re obviously very biased, and for good reason, I’ve lived it and I know much more than any medical professional. I know about the Real Deal of life with Down syndrome, while they know only cold medical facts, statistics and beliefs that a person’s blood can predict their future.

No, I am not going to talk about medical termination… and how everyone will feel one day when they’ll be able to prenatally diagnose autism or depression or alcoholism or bad breath or propensities to job hop… because that day will come… and then what? Should we just get rid of those pesky little problems as well?

And I am not going to get all emotional and talk about how this impacts me as a mother of a child with Down syndrome… and how I am frankly pissed off and terribly saddened that the world out there is getting so excited about a way to get rid of children like my own in quicker and more effective ways.

I am also not going to talk about being Pro-Life, because I truly don’t consider myself to be in that category either.

What I am going to talk about is Pro-Information.

I simply want to see couples making informed decisions based on accurate and up to date information. I can almost guarantee that once a positive diagnosis is received with this new wonder-test the couple will be surrounded by a bunch of doctors and geneticists and given a list of what is wrong with their broken baby. I don’t believe the parents are ever put in touch with a real family who live a real life filled with real love, real joy, real accomplishments and real proof that a life with Down syndrome is worth living.

If I imagine how little I knew of Down syndrome when Malakai was born I can thank my lucky stars he was a little beautiful and cherubic baby lying in my arms full of expectations of love. When I was told all the things that could be wrong with him, I was given the benefit of touching his soft skin, breathing-in his new baby smell, peering deeply into his startling blue eyes, and of course the voice that spoke to me… What about a couple who have no real connection to a 10 week old foetus? What about them? They have nothing to hold on to…

And so what, you may ask?

Well, this kind of new test has been available in the USA for some time and Down syndrome support groups who in the past would welcome between 8-10 new families a month are now opening their arms to only 1-2 families. There has been a 90% drop in the number of babies born with Down syndrome in some areas, which can only mean one thing – we can thank modern medicine for finally finding a quick and effective way of exterminating a whole group of people. And why? Because they can.

And here I thought the eugenics movement had been relegated to the history archives alongside Hitler’s master race, mass forced institutionalisations and sterilisations. But now, it is alive and well and being dished out without the most important ingredient – the information required to make an informed decision.

I believe that if given the chance to really see the truth of life with Down syndrome, someone somewhere would choose differently. They would choose the road less travelled, they would embrace a new way of seeing the world, they would relish as I have in cutting out all the bullshit of competition and expectations in favour of just being. Being loved. Being happy. Being real.

“Oh, I really wouldn’t like a child who gives the best hugs, loves unconditionally, says please and thank you with real sincerity, shares with abandon, dances everyday like no one is watching, makes friends, changes people’s mind sets, and is generally a child that I am so proud of that my heart could explode…” said no one ever.

 

*Disclaimer: I am not for one minute saying that raising a child with Down syndrome is simple or easy or all roses and sunsets – but the same is true for any child. I know, I have a typical child and a special needs child and they both challenge me as much as they give me utter joy and delight. What I am saying is that my children are worth it – both of them.

Looking back



One of the oldest documents I came across on my search, a death notice dating back to 1895

If I’ve been quiet the last two weeks, I apologise profusely. Simply put – I was a woman obsessed. I was unable to do anything but give attention to my obsession; even the children missed our usual playtime in the evenings while I fed my obsession… well… rather obsessively.

 

I am relieved – seriously – to have moved beyond the obsession. Relieved for myself, for my children and for my life. I can finally go back to normal and my kids have an evening-playmate once again.

 

Let me tell you the story of what obsessed me so…

 

The beginning of last week I decided to help my father to find out more about his family; beyond his own parents, he knew very little of his family history. What started out as a visit to a cemetery in Benoni on Johannesburg’s East Rand quickly awakened in me my love for history, for investigation and research, and my lifelong rather irritating compulsion to give a voice to those who cannot speak for themselves.

 

We walked that graveyard in the icy morning air, our hands freezing and our breath making little foggy clouds in front of our faces, looking for my father’s grandfather, who we only knew was referred to as ‘Ted’ Dye. What we found was an unmarked grave of a man called Edward August Dye. August I tell you! My first thought was, “What a funky middle name!”

 

Had his grave been marked by a headstone, our journey would most likely have ended there and then, but we couldn’t be sure. Was this Edward the Edward? How would we know? I couldn't just let this man, who lived a life, married, and had children, dissapear into obscurity under the earth - unmarked, unknown. He was my great-grandfather, his genetic make-up is present in me today, and present in my children as well. I just had to know, I had to give him a voice and try to tell his story. I  became a woman obsessed!

And so I started to dig. I spent days at the South African National Archives in Pretoria, calling up mostly death notices and estate files that were at times over a hundred years old, searching for more information on Edward August Dye and his relatives.

 

My father standing on his grandfather's unmarked grave - Edward August Dye

In awe I opened each new file or box and gently leafed through pages that were hand-written, stamped and officiated by people long gone to their graves. And I fell in love with the tragic story of my family’s journey. In my head, it read like a saga, with each new twist and turn spurring me on to find more, go further and give resonance to people whose history has all but forgotten.  

And the pride I felt when I was able to sit my father down and take him back five generations was a good feeling. A really good feeling.

What I realised on my journey – other than the fact that I am an obsessive person which I knew already, let’s face it – was how difficult life was for families back then. Times were hard, husbands died young, mothers who were equally as young were left with hungry and needy broods of children, and there was hardly two pennies to rub together. Mothers ran away, children were sent to orphanages, and in turn they had families who they abused because they used alcohol to escape their horrible childhoods. Cycles started which are still apparent in my own generation of cousins and their children – cycles of bad choices and addiction.

Then I look at my children and I heave a sigh of relief that the cycle stopped with my childhood, when my mother refused to raise my sister and I in such dysfunction. When she packed a few boxes in her beat-up car and stole us away from the madness. Where we lived in small apartments, eating only what my mother could afford to put on the table; and it was all ok because we were safe from the madness that had started generations before – death, running away, abandonment of babies and addiction-fuelled abuse.

I realised on my journey that cycles within families do not dissipate on their own over time like the most terrible hurricanes or tsunamis; instead they continue to destroy and hide the good in people until someone packs a couple of boxes in their beat-up car, standing in the eye of the storm, and says ‘not my children’.

And so, because of my mother’s bravery I can look at my children and see that I am doing a good job. I am giving them the love, attention and most of all security that my ancestors never enjoyed when they were just young children. The cycle has stopped, on my small branch of the family tree at least.