Roadtrippin'

Nothing beats some time off, a change of scenery, and a good old fashioned road trip. Boy I love it!

The drive from Pretoria to Durban, leaving before the birds start to chirp, watching the sun rise as you leave Johannesburg behind you... it is something that nourishes my soul like a bowl of steaming vegetable soup warms my body on a winter's night.

Gliding along the vein-like roads that cover the land between my home and the South Coast, I feel as though I am crossing God's land - because in my mind God has never lived in a church, or in a book, or even in my heart - for me he lives in the land itself. In the fields, atop the glistening bodies of water that nurture the animals, radiating from the softest hills to the most jagged of outcrops. When I go on a road trip I encounter God.

Then of course, at the end of the road trip is the seaside holiday. And what I love most about the sea is the simplicity of it's never-ending entertainment. My children can spend hour upon hour at the beach and never tire - it is like nature's way of saying 'come, let's play!' And boy did my boys play!

Oh how I loved our roadtrip!

It's the small things

I was reminded recently of the small ways in which parenting a child with a special needs differs from parenting a typical child – because for the most part it’s really not that different if you take away the initial shock of the diagnosis, the weekly therapies and other developmental challenges.

            But I would like this blog to act as a kind of a window into another world – a map if you will to a road less travelled (although that’s kind of an understatement because there are so many parents out there who are raising, loving and truly enjoying their children with special needs).

            But as I mentioned, I came across another small difference the other day that I wanted to share. I read a story of a mother of a child with autism in the USA who was arrested for attempting a murder-suicide (herself and her child). Now, I cannot for a minute profess to know why she did it, or even contemplate how this decision could be condoned in any way, shape or form – it’s just profoundly unacceptable.

            However, this was a woman who was an active advocate for her child, who had a massive support network in the special needs community, who was outspoken and blogged about her experiences. And yet, she got to a point where she burnt out (I have read somewhere that raising a child with profound special needs is not unlike being in combat for weeks, months and years – and that these parents can succumb to a condition that’s very much like combat fatigue).

            The point of the matter is she had enough and felt she couldn’t continue, and yet she didn’t choose to end only her own life, she wanted to end her child’s life as well… and this is where I noticed the difference.

            I have never been at a point where I wanted everything to end, not by a long shot, but I sort of understand the feeling that I cannot leave my son behind. Unlike other parents who wish and pray for their children to have long lives, and I feel that way about Harlan – I simply don’t feel that way about Malakai.

            Of course I want Malakai to have a long and fulfilling life, but I don’t ever want to leave him – I don’t want die before him. I feel totally responsible for him for the rest of his life – and in order to do that I need to outlive him. Now, whether or not I will outlive Malakai is another story altogether because I know better than anyone that life has its own ideas – but I start to breathe a little faster, my heart gets a dull ache, and I begin to worry at the thought of what will happen to my son if I am not there to care for him personally.

            There are places for people like Malakai – called ‘homes’ – but they’re not that. They cannot offer Malakai the love and attention that I can (that only a parent can). And so the thought of Malakai’s life after I die is a scary and worrisome prospect for me.

            As a parent of a child with special needs I do not wish my son a life without me. I simply don’t. Maybe I’m selfish, but I don’t think it’s that – rather I think it’s a deep question of whether a world that so happily wants to terminate babies with Down syndrome take proper care of the child I know and love and truly believe is worthy of this world and his life? If being different from the rest of the world is so undesirable then surely he’s safest in my care? And there isn’t a mother alive (of a child with special needs or not) that doesn’t burn with the desire to keep her children are safe at all times?

 

So while I don’t condone a murder-suicide on any level, I can understand how that mother was unable to leave her child behind. For whatever reason (perhaps reasons that echo my own) she couldn’t imagine her child’s life without her, and yet she couldn’t imagine her life at all.

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.



 

Someone please report me!

I am probably going to come to regret writing this post, but hey... what is blogging if it isn't an honest look at a person's life? And, in the interests of letting other mothers know that they are certainly not alone, it is my obligation to be as open as possible - not only about the good, but about the bad as well...

This morning was one such day. You know the days when you feel like you've simply lost any and all control over your children? That you've failed miserably and you're up the proverbial discipline creek without a paddle?

What started off as a good day - and by that I mean I managed to dress Harlan without a temper tantrum (10 stars for mommy!), and off to Speech Therapy we went (our usual Thursday morning appointment for the past... oh I dunno... 4 years!).

All the therapist wants from me is five uninterrupted minutes at the end of the session to discuss Malakai's progress and our work for the week ahead, but no. The boys will not let me have 5 minutes, or even 15 seconds for that matter! They run around her room, screaming, unpacking her handbag under her desk (gasp!), trying to escape out the door, the window, climbing the ceiling... whatever they can manage to achieve.

And I try everything (as I do... every Thursday) to keep them quiet. But no. There is nothing like two children who for all intents and purposes seem to have been raised by wolves, running around a therapy room totally oblivious to their mother's pleas for them to sit for. just. a. minute.

Eventually I am dragged out of the place, waving a hasty goodbye to the therapist, and we hop in the car for the 3 minute drive to creche. There the boys run off into the playground (the opposite direction of the classes) and I am left to chase after them in my very unflattering way...

I can carry on but whatever - I am sure you get the picture.

It is on days like these that I wonder if I'm the worst mother alive, totally incapable of rendering to the world well-behaved children? I wonder if I should report myself to child services for the obviously terrible job I'm doing?

There are days like these for every mother I suppose - and today happens to be my turn. I wonder if all my hard work and hours of negotiating, time outs, and putting boundaries into place has made any difference? Do my boys actually care? Not today quite obviously.

So I sit and wonder and think and plan... how am I going to do this differently? How on earth will I get my children to listen? Will I ever feel like a good mom again? And I know I will, I am sure I will, but for now I want to weep a bit into my extra-strong cup of coffee and wallow happily in the silence while my boys are at creche.

No witty solutions. No happy endings. The end (for today).

The sanctity of naptime

 

With two small boys born a very short 18 months apart I am often asked by strangers in shops, at sporting events, or in restaurants if they are twins – to which I respond with a little snort and a single raised eyebrow, “No they aren’t… but they may as well be!” I can’t see why people think they’re twins because they’re quite obviously different sizes, perhaps it’s their matching fair hair and startling blue eyes that does it.

 

The point of the matter is that although they are 18 months apart, they may as well be twins because whatever the one does the other one wants to do, it really is a case of Monkey See Monkey Do in our house. And while this is terribly cute and terribly sweet, it is also terribly challenging and terribly tiring most of the time!

 

Our days are never quiet and they typically start at 5:30am when Malakai’s body clock goes off, and there is no snooze button on that, let me tell you! We never sit still. We are always on the move and when we’re not in the safety of our own home (which has been Stow-Boy-Proofed), I have to be on high alert and watch the two boys constantly. Of course this is getting easier as Harlan gets older, but Malakai is still in the developmental phase that is strongly characterised by unmitigated, fearless, crazy-as-hell exploration!

 

And now they are both realising just how much fun life can be when they team up and attempt a Great Escape. I often have to wonder what a fly on the wall would think when I drop the boys off at crèche in the morning – I won’t lie, some mornings I’ve aged by 5 years in about 15 excruciating minutes… From Harlan hanging off my pants (I know to always wear a belt now) to Malakai’s ritual lick up the side of my face, I am less bothered these days and have thankfully slowed my aging process a bit.

 

But I am still often caught in a split second decision to run after Malakai who’s aimed himself like a speeding bullet at traffic, or a body of water, or whatever other death-defying situation is facing him and Harlan… Mostly I pray like hell that Harlan will stand completely still and heed my calls to ‘Stay there Harlan! Don’t move! Mommy is coming! Stay ok!’ as I do a very unflattering sprint – my cheeks flapping up and down, my not-so-firm-mommy-boobs pushing my hold-it-together-mommy-bra to its limits – to catch Malakai who at this point is laughing his head off at the sight of his mother…

 

So, back to the point of this post…

 

Nap time. That beautiful time of day where all is silent and my children are guaranteed to be safe and sound for at least 2 hours. It is sacred in our house, and as such we treat it with great respect…

 

Thou shalt not venture out between the hours of 12:00 and 14:00

Thou shalt not book any activities or agree to any socialising in the middle of a day

Thou shalt not open the door to any visitors between the very same hours

Thou shalt not mess with our nap time, ever, unless you want to a can of whip opened on your ass

 

And friends always say, “Oh I wish my little one still napped in the day!” to which I respond with another snort and single raised eyebrow, “Do you think my children want to sleep? Re-eeeaaaaa-lllyyy?” Of course they don’t! My children don’t calmly walk up to me and request a little shut-eye… never gonna happen!

 

Instead we beg, threaten and bribe our children to close their sweet little eyes and let mommy and daddy sit for a little bit. Yip – nap time is our saving grace, our little window of sanity, our ‘happy-hour’ and I don’t even want to think of the day that we actually do have to give it up… Hopefully its far, far, far in the future!

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.