Stop laughing, you're hurting my ears... said no kid, ever.

I take this motherhood thing somewhat seriously – too seriously perhaps. I consider it make or break if dinner isn’t served at precisely 5:45pm and doesn’t include at least one protein, one starch and one veg… anything less is complete failure because honestly, how difficult is it to get dinner done? It’s not rocket science… unless of course I have two kids screaming at my feet that they want to play, play, play.

There are many evenings where my kids just want me to read them a story, or help them build a Lego-garage for their cars, or play just another 10 minutes in the garden and I decline with the usual, “Mommy has to make dinner, here’s your digital babysitter iPad…”

Things gotta get done, and dinner doesn’t make itself… Just like doctor’s appointments don’t make themselves, chronic medicines don’t magically appear, therapy appointments don’t keep themselves and those painfully boring daily fine-motor exercises disguised as ‘fun’ do not invent themselves… So yes, things gotta get done and mama’s on it!

But I realised the other day that all this stuff; the nitty-gritty of keeping kids clean, fed, housed and early-interventioned (that's not a real word, of course) makes me frown. Possibly more than I should frown… because like I said; I take it all so very seriously… I blame it on a ‘worry gene’ that expresses itself in my ability to have an anxiety attack over pretty much anything. But enough about me.

Let’s talk about the kids… and what they actually want from me.

I am delusional if I think that they care whether dinner is half-an-hour late, or if they even noticed that I hid veggies in their pasta sauce. They probably couldn’t care less if I put clean pants on them, or yesterday’s pair (ok, I lie… Harlan would care. very. much. But he’s strange like that). And have they noticed lately that their toys are sorted by theme, size, colour and function? Huh? Nope. They simply don't care about that stuff.

What they do want from me is lots of time… lots and lots… in fact, they spell ‘time’ this way – L.O.V.E.

And they don’t settle for just any kind of time, oh no. They’d much rather prefer the kind of time that includes lots of mess, stickiness, chaos, jumping, hiding, running, laughing, hooting and tooting… The kind of time that will etch itself in their little cells… because let’s get real, they’re never going to actually remember each moment of these early years. They may actually not remember any specific moments at all… but they will remember how they felt because it’s etched into their little bodies at a cellular level – and their very essence will be screaming ‘I am loved’, and perhaps more important than that – ‘my mom doesn’t just love me, but she loves being my mom.”

Because there’s a difference between loving your children, and loving the process of being their mother.

I find it easy to love my children, as I imagine most mothers do – how could I not love my children after carrying them for nine months in my own body. It is biologically and hormonally impossible to not simply love the daylights out of every little inch of them! I am totally crazy about my kids – stark raving bat-shit crazy.

It’s the process of being a mom that’s a little more challenging – the balancing of delivering everything they need to be safe, secure, and healthy while also remembering to just have some fun, laugh, make funny faces, dance under the stars, and make shadow puppets in bed at night – you know, the cellular stuff, the actions that show my children I love being their mom, the stuff that will leave an indelible mark on them as they grow from little-ones into big-ones. The stuff that says ‘I am loved'.

I’ve realised that above all else, I need to show my children that I love being their mom.

On Being Human

 

I am busy reading ‘A New Earth’ by Eckhart Tolle. This is my third attempt, and I have already had to force myself to pick the book up, night after night, on this last attempt. I can’t say why I’ve struggled so with this book. I can only think it may have something to do with my change in character from my teenage years where energies, reiki, spirits and astrology were very much part of life; to now, where I have my feet planted firmly on solid ground.

                It is not to say that those who believe in those things do have have their feet on the ground, or that I think it's a load of bull, it is rather that as I’ve grown older I’ve become in need of practical, down-to-earth, basic beliefs to guide me - like 'meat & potatos' kind of stuff. Perhaps it has to something to do with Malakai’s birth, where I faced a total shift in my perspective. I very quickly found I had to be responsible, do the right thing, and focus very much on my child’s physical needs.

                But I never really lost my previous belief-systems; they were just filed away for a period of time. And that time is now coming to an end; I am dusting off those old perspectives and beliefs. The reason for this is because I’ve also reached a point where I know that my mind is my greatest enemy, where my constant need to do, achieve, become and create is getting in the way of the stillness that has to come through. I have systematically shut off emotional well being in favour of mental prowess – and how could I not?

                I have spent the last five years researching, learning, finding and systematically assimilating hundreds of pages of research, studies, reports and findings into anything and everything that has to do with Down syndrome and the variety of ways in which it may or may not impact my child’s development. I had to do the right thing by my child. There was no time for my seemingly inconsequential feelings.

                But by shutting off my emotional well being I have instead created a well that is so deep and so vast – filled to the brim (and now spilling over) with feeling. It doesn’t take much to set me off in a fit of tears and unimaginable heartache. And to boot, I think I've overused my brain and thinking processes to the point where I suspect I've killed off a couple hundred-thousand brain cells. 

                Which brings me to ‘A New Earth’. I am forcing myself to read this book in the hopes that somewhere in there I will find my salvation. My balance. Myself. And yet, I suspect my mental self (which Eckhart calls the ‘ego’) has tried to stop me from reading (insert evil laugh... bwa-ha-ha-ha...). Despite this I’ve found the resolve to pick the book up again, and again. I am now halfway through and learning about the difference between Ego and Being (or Human and Being) and I had an epiphany last night that I had to share with my husband.

                Eckhart spoke of two things – of Doing and of Being; and of Human and Being. They are similar, so stick with me here.

                He explains that our Ego is addicted to Doing. We think that if we do enough we will eventually become enough. But the Ego never has enough; its desire for more is insatiable. And so we fill our lives with Doing-Doing-Doing and totally neglect simply Being (which is the link to our inner selves, our true selves, where we are One with everything). I saw myself so clearly in that analogy of Doing – because that is exactly what I’ve been doing for 5 years (excuse the pun). I have been Doing-Doing-Doing and nothing else… To the point where if I manage to complete a project, the emptiness that follows scares the hell of out me and I become depressed because I’m not Doing Something Amazingly Important! Ha!

                The next thing he discussed just about hit me upside the head and my first thought was of Malakai. Eckhart referred to all of us as Human Beings – the Human referring to Ego, and the Being referring to our Inner Selves where we are One with everything. He said that our journey on earth is to find a balance between being Human and simply Being. Because let’s face it, we will never be free of our Egos and our Humanness, but we can recognise it for what it is and slowly work towards the knowledge that this body, these talents, these limitations, these fears, these imperfections; they are part of my Humanness, but they are not ME… you see? Do you see?

                I thought immediately of Malakai and how his birth was my first true knowledge of this. I remember in the chaos, pain, disillusionment and tears of his first few days of life… I remember in all of that when the doctor brought me Malakai’s blood test – called a Karotype – and there it was, plain as day – “This patient displays triplication of the 21^st chromosome in all 20 cells tested that is consistent with a diagnosis of full Down syndrome. Refer patient for genetic counselling.” There it was, bloody proof that our baby was broken.

                And yet, in all of that, a voice that felt as though it came from somewhere else and still rather strangely sounded like my own said, “How can a blood test tell me who my son is going to be? It can’t tell me if he’s going to like riding bikes, or painting, or singing. It can’t tell me if he’ll be outgoing or introverted. It certainly can’t tell me that he won’t love hugs and kisses, tickles and stories before bed.” I just knew, instantly, that a blood test could not tell me WHO Malakai was…

                And so, despite the fact that a blood test confirmed my son’s Humanness is flawed or broken or whatever… it does not take away from his Being - they are two different things people! Deep inside him is a Being, like me, like my husband, like you, like everyone else. And this Being is made no less by the virtue of the Humanness in which it resides... let me repeat that: And this Being is made no less by virtue of the Humanness in which it resides.

                In fact, Malakai couldn’t care less about petty pitfalls of Ego and Humanness - jealously, anger and bitterness - until Harlan came along and showed him how to throw a tantrum and how to hold on tightly to stuff – mine, mine, mine. Bless Harlan’s Humanness, for he is just like the rest of us and will learn in his own good time. Malakai only learned these behaviours from mimicking his brother, and in the very beginning he would share happily – until one day he realised that Harlan would take everything without stopping if he let him. Typical of a 2-3 year old, Harlan is selfish, demanding and learning to associate everything as being either ‘mine’ or ‘someone elses’, and the more he can organise for himself, the better.  

                But still, Malakai simply doesn’t prescribe to notions of socialising; the norms and rules and ‘expectations’ in this world. In this way I suppose his Humanness (his Ego) is broken, but we knew that already. And I ask you is it such a bad thing?

 

             I see Malakai as being more in touch with his Being, and with much more ease than anyone else around him – almost as if he has a direct line that is always open. And yet, the world that is ruled by collective Ego will look at Malakai and see a broken child, unworthy of the same rights to life, love, and relationships as the rest of us. Seriously, there are many people out there - many - that would prefer if Malakai and others like him never got the chance to take a breath, live a life, give and receive love. Why? Because they come in a broken package that magnifies the reality that our Humanness is essentially flawed - for some its an extra chromosome, for others its a missing limb, for many its addiction (to drugs, money, sex, power or whatever), and for all of us its the fear that we are never going to be good enough. But as long as we can all pretend that perfection in our human form is possible, as long as we continue to eliminate those 'irritating little mistakes' that our bodies betray us with, we can continue to believe the lies our Ego's present as truth.

 

              No, Malakai's Being is never far away, and most who meet my son will comment on how gorgeous he is, how happy he makes them – perhaps because his Being is having a secret and direct meeting with their Being; sidestepping the Ego altogether. He simply makes people happy, and yet the default Egotistical response to Malakai and others with Down syndrome is of pity or fear – and I have come to really understand what Jesus said when he was nailed to his cross, “Do not judge them for they know not what they do.” It's just an Ego-Thing.

                But like it or not, the Being is there and it essentially knows and understands that the package we come in – our Humanness – is just a shell. It is not who I am. It is not who Malakai is. It is not who you are either…

 

Making party memories

It is coming up for Malakai's birthday and I am totally unprepared - in fact, I am always totally unprepared for most major events, I should know that by now. I am simply not one of those moms - y'know the kind that whip amazing parties together without as much as chipping their manicured nails?

I find the whole affair of themed birthday parties totally overwhelming, both in the time they take to arrange as well as the dent they make in the cheque account. It's not that I haven't tried, which I have really! Both the boys' first birthday parties were lavish and expensive affairs - all the decor, the food, the colour-coordination... And I attempted the whole thing again for Malakai's second birthday, and that was where it ended, rather abruptly.

Six months later - for Harlan's second birthday - we found ourselves on a family holiday at a working dairy farm in the beautiful Underberg. My husband and I figured that if we were going to spend that kind of money, rather spend it on a family holiday, a time of togetherness. And boy did we make memories! The children ran out the cottage every morning to see the cows munch their way from the field above the cottage, to the field below. We braaied every night, took road trips, climbed mountains and walked alongside streams. The boys drew in the sand with sticks and the very friendly farmer let them ride the tractor up and down the tree-hugged lane. There was no television, and we didn't care because the view was amazing.

Wow, I felt like I'd made the right decision to rather spend 'party money' on a memory-soaked experience for the boys and us... So for Malakai's third birthday we planned another trip - this time to Shelly Beach; a place straight from my very own childhood memories. Malakai loves the beach, like most kids, and so it was booked. Little did we know that the week we were at the beach was the same week it snowed in Gauteng (and much of the rest of SA)! We didn't get the snow in Shelly Beach, but we did get constant horizontal downpour for three days. I will never forget how I had to convince two very impatient toddler boys that we really actually were at the sea, and no they couldn't actually see it, but I promise it's really actually there, if the weather would just play along! This was followed by three very magical days of beach walking, sandy feet, buckets and spades, colourful umbrellas and cooler boxes filled with sarmies, cool drinks, crisps and ice creams.

 

 

 

It was another memorable tick on my 'what I have done right by the kids' list. And so we went... until now.

Now I'm faced with two boys (no longer babies, or toddlers) who desperately love birthday parties. They talk about the parties we are invited to for weeks after. Weeks I tell you! How can I not give them their own birthday parties? Of course we had balloons, cakes, candles and pressies on all our holidays, but it's just not the same without friends, noise and mess is it?

So here I am, having to plan a party again - themes, games, invites - and even though I'd much rather prefer to make memories as a family, I know that this too will be full of good memories for my children - its worth it, if only for the smiles on their faces.

Perspective

The day Malakai arrived - 08/08/08 - moments before his secret was revealed
and our lives changed forever

So, as any respectable Type-A Personality with an additional Virgo streak will tell you, I have blog posts lined up, ready for publication... But I'm going to have shelve the post planned for today because as life would have it, I have a serious case of 'gotta-share-what's-on-my-mind-right-now-alitis' (please excuse the spelling on that one).

Since Malakai's birth and diagnosis, our lives have changed exponentially. And not just in terms of the time and money we spend on Malakai's therapies and doctor's appointments, sleepless nights and constant planning... It is our life-long commitment to do everything we can to let his light shine brightly in the dark spaces that hide between notions and concepts of 'worthy and unworthy', 'success and failure', and ultimately understanding more deeply with every moment that all life is worthy - deeply, profoundly and incredibly worthy.

I have in the past been approached by people brave enough to ask the question, "How does it feel? To have a child with special needs? How does the whole experience feel?" Sometimes it comes from a friend, mostly from a stranger, and on the odd occasion from someone who themselves are facing the possibility of a diagnosis.

The truth is I have never had an unequivocal answer - it changes over time, as any journey into parenthood changes, but perhaps the easiest way to describe being a parent of a child with special needs is ask that person to do something to their perspective that will dramatically alter the way the see the world around them. Walk around on your knees for a day looking up at everything, or stand on stilts looking down, or put on very thick glasses that magnify everything - whatever it is, do something that will profoundly change the way in which you perceive your 'everyday' world.

This is how it is feels raise a child with special needs - a profound change in perception. It is not horrible, or ugly, or unfortunate - it is just different.

Then, imagine trying to chat to your other mommy-friends about their children and their day-to-day happenings when you know that your perspective is utterly different to theirs.

Your problems are different.

Your dreams are different.

Your perspective is different.

And you can never ever change back. You can never un-learn the new way in which you see the world - it is with you for life, and for those reasons you will always see things a little differently than the rest of the world.

Is this a bad thing? No, I don't think so. Is it sometimes lonely? Yes, for sure.

The days are long...

 

There's this almost imperceptible thing that happens to babies... they grow into toddlers and then into children... Yes! I swear!

No matter how hard I try, I cannot actually see the boys growing before my eyes as the days pass by in a whir of testing boundaries, fine-tuning personalities, and just carrying on with the busy job of stepping further and further into Life. But, when I look again they have grown and I am left with a confused expression asking, "When did this happen?" I feel rather sheepish, like I missed out on... oh I dunno... a few months or something!

I talk about having two toddlers, and I realised the other day that - no - they are now little boys. Full of bear growls and pretend games, climbing the furniture and doing mind-blowing stunts on the jungle-gyms down at the Irene Dairy. There's plenty of 'Look mommy. I show you!" and "No! I do it!", and I realise they are taking their independence whether I like it not - can anyone say 'white knuckle fist' as I hold pathetically onto notions of them being little toddlers that I can physically guide to safety?

Oh no. Where I was once all embracing arms and gentle whispers of 'let me help you', building forts or steering them to safety down the slide, my arms are no longer welcome... Now it is more of 'watch out!' and 'how many times must I tell you?' in high pitched desperate tones of utter horror and often times disbelief in what they'll get up to next.

Nighttime storybooks are now not as exciting as finding the next 'big thing' to jump off, and instead of calm and peace I hear squeals of utter delight as the boys collude on the next game - hiding under the dining room table, rearranging furniture in order to reach things they're not supposed to reach, chasing each other up and down the passage, and pretending to be bears, or tigers, or whatever other animal makes impressive growling noises.

The passage of time - 5 years since I became a mother - stops for no one; you're either on it or you'll miss it. And there is nothing quite like a little human being to show you just how fast time flies by. It reminds of one of my favourite sayings by another author and blogger, Gretchen Rubin of The Happiness Project:

THE DAYS ARE LONG, BUT THE YEARS ARE SHORT

There is only so much longer that we'll be greeted with whoops of joy when we tell the boys we're going to search for the Gruffalo until this will become too uncool or boring for them... I don't expect they'll tip-toe into our bedroom at night and sneaking into our bed when they're teenagers. And I doubt I will be faced with imploring pleas to 'come and look mommy' when they grow into young men. 

So, the next time I have to microwave my cup of coffee because I'm too busy with my boys to drink it while it's still hot, I will not frown. I will gladly move over and make space in my bed at night so that my boys can cuddle in close and steal my blankets. And I will dish out my sincerest interest and attention for the myriad of inventions, discoveries and works of art that my boys produce, so proudly, on their own. Parenting is in the details; every last miraculous one of them.

BY Loren Stow