An Unfolding

 

Being a parent of a child with special needs is many things, but dull it isn’t. Well at least not for me! I am constantly having mini-awakenings – small aha moments as the meaning of my child’s diagnosis unfolds a little more day by day.

                One such unfolding occurred this morning when I realised that while we have spent Malakai’s life so far doing everything we can to afford him a ‘typical’ development and will we will continue to do so, the opposite of this is also coming into play now. Like a yin and yang or push and pull, I have realised that there are some things we simply cannot improve on.

                We can (and have) helped Malakai to develop in amazing ways – and I believe this is because I have never placed a ceiling on what he’s capable of. I have never thought he was incapable of something simply because of his Down syndrome.

                But – and this is a new but… I have realised that there are some things we simply cannot push him to be or do. There are some things we simply have to accept. And I know I am sounding rather cryptic here, so let me give an example.

                Walking into school…

                Something that most kids just do. Maybe a tear or two, even a bit of minor manipulation. I know because I’ve been there with Harlan. But eventually your kid just walks into school right? Well not if they’re Malakai.

                He simply refuses to walk into school like the rest of the kids. He cries, screams, performs and is genuinely and desperately unhappy by walking into school. And together with his teachers we tried everything – nothing short of a welcoming party! The only thing that was missing was a marching band and streamers… And yet? Not having it.

                Last week after a particularly difficult drop off where Malakai even tried to bite me I stumbled back to my car after he’d been dragged off into school and I wept. Big hot tears streamed down my cheeks. I just couldn’t believe that after all we had been through with Malakai, after all his hard work and our immigration to another hemisphere, it could all fall down on walking into school. Seriously? It would be this that would undo us?

                Then it dawned on me – step back and take the pressure off. Think of another way – walk him to his desk myself. Give it a bash because really, it couldn’t get much worse… And it worked. He goes in happily now when I take him. Problem solved right? Yes! But this is what I mean about a yin and yang – not accepting and accepting. It’s a fine line and a funky dance…

                I realised today that there are just some ways that Malakai is different. He will never be the same as other kids. And nothing we do can change that. We need to accept that and meet him where he is.

                The challenge is deciding when to accept and when to push him to achieve more, do more and be more… that’s an aha moment for another day obviously.

For what it's worth

This whole thing? Moving my family to another country in another hemisphere. Leaving everything we know behind… is it worth it?

                This has been the most difficult thing I have ever done in my whole life. Difficult in ways that I cannot even describe in writing – or rather in ways that I don’t want to revisit through writing. But the short answer is Hell Yes.

                If I have to start describing how amazing Malakai’s school is, and how wonderful Harlan’s preschool is – I could carry on for days. At times the attention that Malakai receives, the effort that is made for him by people that are essentially total strangers – it’s overwhelming. I cannot believe that they would do so much for him and for us? And why don’t I believe it? I don’t know why – is it the way I was raised, the country I’m from, my experience thus far? Is it because in South Africa I had total control of his therapies and interventions and here I have no control, so I have to allow others to do what I cannot do? Perhaps…

                But it is just incredible.

                Malakai has a class teacher and teaching assistant, but then he also has three support workers who work at different times of the day and week so that he has constant one-on-one attention. His class teacher plans his lessons and the support workers implement it. Malakai has his own work station and they give him a very visual approach to learning. He spends as much time as possible with the other children in the class and has made friends! There is Hassim and Joe, Lilly and Milly, Maya and Henry, Tom and Ben… We even went to a birthday party last week (Henry’s) which was awesome! A few times in the last week Malakai has walked his friends (usually Lilly or Milly) to their car holding hands. I mean seriously!!!! I can die from the cute-factor!

                As for academics, Malakai can now write all his numbers and has learned to recognise, say and sound out M, S & N. They sing with him. Dance with him. Read with him. Exercise with him. Laugh with him. Love him. Accept him. Want him… and it feels so good it hurts.

                As for Harlan – who unfortunately tends to take a back seat in this blog, but definitely not in real life I promise! – he has made me so proud. He has walked into a new preschool, filled with new kids who speak a little funny and eat a little funny. He has done all this in a way that the teachers have asked, “And you said Harlan was shy?” and I know he’s shy! Believe me! He’s been so brave, so smart, so wonderful. Have I said yet how proud I am of him? It has not been easy for any of us, but I think least of all Harlan, and he has really been a brave, brave boy.

                So, yes. It’s been worth it.

He listened

 

 

Since his passing last night, I have been wracking my brain trying to figure out what it was that made Nelson Mandela so special. I was putting the kiddies to sleep when my husband jumped out of bed and asked me if I saw what was happening all over Twitter... No I hadn't seen, and together we switched on the telly and caught the last few moments of Jacob Zuma's address announcing that our beloved Tata Madiba had just passed away.

Since then the world has almost erupted, like there is a split down the middle, a gigantic hole from which rivers of condolences stream for the man that not only inspired a nation, but the world. Words like Peacemaker, Leader, Legend in the global civil rights movement... He is mourned and missed by everyone who is anyone the world over, and not just that, he is missed by ordinary people just like you and me.

What I haven't heard spoken about much in his eulogies was his profound sense of obligation to make the future better by empowering children - in South Africa as well as Africa as a whole. In terms of development, health care, access to education, even the simple things like having a parent (even just one), a warm place to sleep and enough food to keep their tummies from grumbling - Africa does not have the best track record. Our levels of child deaths due to preventable accidents is some 25 times higher than the United Kingdom for example, and our rates of foetal alcohol syndrome are the highest in the world (in some regions of the Western Cape as much as 100 times higher than the global average).

Nelson Mandela wanted to change this, and so he set up his Nelson Mandela's Children's Fund (NMCF) which raised hundreds of millions of rands to make a difference in the lives of children. He started the foundation with his own contribution - his prize money from winning the Nobel Peace Prize, and continued to contribute large portions of his monthly salary while in the presidency to the fund he was so passionate about.

I was recently given the opportunity as Features Editor of Mamas & Papas Magazine to write a cover story on the NMCF and learn more about the organisation and the man who founded it.

"Why did Madiba have the kind of affinity he did for children?" I asked, wondering why he didn't become a champion for jobs, or the environment or any other number of worthy causes. Why children? What I learned was that Nelson Mandela often spoke of how during his time on Robben Island he never once heard the sounds of children - obviously. No cries of joy or cries of sadness. No tiny voices or excited footsteps. No bouncing balls or clapping hands. Nothing. And, of course, he also missed raising his own children and sacrificed his life as a father in order to become the father of a nation that was decades away from being a reality.

Next I was told, in detail, about how Nelson Mandela had an express mandate - he wanted to hear the children's voices, he wanted to listen to them speak, he wanted to know what it was they needed instead of dictating to them what he thought they may need. He made it a priority to listen to children personally in order to really understand them. And as if that were not enough, his team understood and delivered on his request that all children be included - he didn't only want to hear from a certain kind of child, he wanted to hear the voices and see the faces of the black, white, coloured, indian, disabled and able children.

Heartwarmingly, I learned that when it came to including children with special needs at his annual birthday party - which was in fact a party his fund threw for a large group of children every year - he made it clear that there was to be no 'token' invites. Those children who had mobility challenges or cognitive challenges, they were not be to be relegated to the corner and brought forward for photographers before being excluded again - Nelson Mandela simply would not have it. All children were to be included, sincerely, respectfully and with love.

And so, as I reflected on this today I realised that I had it! I finally know what I think made Mandela so special; what his 'secret power' was.

He listened.

I mean he really listened.

And from his profound ability to really listen to others sprouted the other qualities that made him an icon respected the world over, a person that a nation of people could refer to as father or tata. His ability to listen to others made him able to truly understand them, he was then able to meet the most fundamental human need - that of being recognised, of being heard - because that is one of our deepest desires isn't it? To really be heard and understood?

He could captivate a room because he was able to listen, to make every person in that room feel that they had been validated. And I believe from his ability to listen came his immense humility - he never pushed himself on others, he never forced, he respected others because he listened. He certainly did this with children, and I am sure he did the same with world leaders, politicians, kings and queens alike.

And so I realised that if I wanted to live Madiba's legacy perhaps the most important starting point for me is to talk less and listen more; by talking I simply share what I already know, but by listening I will learn something new everyday.

I could definitely listen to my children more. My husband would probably have a mini-stroke at the thought of me listening to him more! And it may just change the way that I interact with my family for the better.

And what if I really listened the next time I found myself at the check-out counter by the supermarket? What if I stopped and took the time to really listen? I may just change the way in which I interact with my community for the better.

And finally, what if I listened to myself? What if really listened to my own needs, my own dreams? What if I gave the little voice behind my fears and uncertainties a moment to shine and be heard? What if I stopped and listened to my tiniest voice? I may just change myself for the better.

So the way I see it - Nelson Mandela's super power was his ability to listen. To be still and listen. To listen to himself and understand that hate would only create more hate. To listen to his people and be the leader we so desperately needed in our fledgling democracy. To listen to the children whose lives have been forever changed by his Nelson Mandela's Children's Fund. To listen to himself again when it was time for him to move out of the public eye, despite the fact that we cried "Don't go! Please... what will we do without you tata?" He knew he had laid the foundation, and he had set the example - he couldn't have done a better job at that.

So will you listen? Can I promise listen? Can we all listen to the message he gave his life up for?

I think so.

Rest in peace Tata Madiba, I have heard you.

One of my absolute favourite pictures of Madiba

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.

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.



 

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.

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…

 

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.