Showing posts with label Harlan. Show all posts
Showing posts with label Harlan. Show all posts

Thursday, March 6, 2014

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.

Wednesday, February 26, 2014

Say whaaaaat?.... Wednesday



Harlan was having a million temper tantrums the other day... so by the time we got to bedtime I was all too eager to get the boys straight to sleep and forget about any story time! 

Me - there is no time for books tonight.

Harlan - just one book mommy...

Me - (giving Harlan a sideways glance, secretly happy that he loves reading so much)

Harlan - Mom, just take a deep breath!

Wednesday, February 19, 2014

Say whaaaaat?.... Wednesdays



While out the other day at our local country park, the boys were simply fascinated by a golden retriever that was running full speed into the freezing water to fetch a stick...

Harlan - I want to swim too mommy!

Me - Harlan, it's far too cold to swim my boy!

Harlan - (after some thought) One day when I'm a Dalmatian can I swim in the pond?

Me - Sure Harlan, when you grow up to be a Dalmatian you are welcome to swim in the pond!

Wednesday, February 12, 2014

Say whaaaaat?.... Wednesdays



At Burger King the other day (yes... we are those kinds of parents, stop judging!) the kids are wearing their paper crowns:

Harlan - Mommy I'm a king!

Me - Yes Harley, you are.

Malakai - Me king!

Me - Yes, you and Harley are both kings.

Harley - Mommy, let me tell you something (pulling me closer...) you are a girl king!

Me - Thanks my angel!

Wednesday, February 5, 2014

Say whaaaaaat?.... Wednesdays

So, starting this lovely New Year (yes!!!!) is a new  regular post I'd like to call 'Say whaaaaat?.... Wednesdays'

While Harlan may be my second-born, I've experienced a lot of Firsts with him, not to mention the cutest, funniest and sometimes just plain scary stuff that comes out his mouth almost daily... The kid cracks me up!

I didn't experience this with Malakai, and of course a global speech delay will do that to a kid... I often wonder what Malakai would be saying if he could? What sorts of quirky ideas is he having but just not able to express?

But then, I spend a lot of my time talking about Malakai, so this is pure Harlan, because I love this crazy kid and think he deserves a medal for his awesomeness!!!




In the bath the other day Harlan drops a bombshell:

Harlan - Mom, I have a pain in my brain.

Me - Really? Harley where is your brain?

Harlan - I don't know mommy, where is my brain?

Me - (I point to my head)

Harlan - No mommy! You forgot! Its here! (laughing loudly and pointing to his heart...)

*I didn't know whether to laugh because he thinks his brain is in his chest, or whether to worry because my child is having chest pains!?

Saturday, February 1, 2014

A whole lot of newness

 

Happy New Year!!!

Ok. So I have never been the best at hitting at the nail on the head when it comes to New Year, I have always been a bit slower on the uptake and this year is no exception to that rule.

So, it's already February and I'm wondering where the time has gone? Wasn't it just Christmas? Good grief!

But I forgive myself (for once) because life has certainly been a crazy mish-mash of newness at every turn; immigrating to a new country, on a new continent, in a new hemisphere will do that to you!

Getting used to life in beautiful Surrey has been interesting, gut-wrenching, uplifting, terrifying and totally satisfying all at once. The tough bits are all about missing home, about looking out the window to face yet another day of drizzle, about craving an Ouma rusk with every fibre of my being, about wanting to reach out and realising the person I want to reach out to is not just down the road anymore. Yes, there have been tears.

But then I am faced with the glorious bits; driving through the countryside past farms and tiny villages to drop my children at their respective schools, really being dumbfounded at the prettiness that reveals itself around every corner, being pleasantly startled at how well the bureaucratic machine turns in this first world country, and of course... the children.

I am so stinking proud of my boys. Harlan has been a champion of a boy, walking into his new school and settling in with such bravery despite the fact that I know it was difficult for him. I know he was scared, I know he was nervous, I know he wished he didn't have to do it, but he did and he's happy now and I am one proud mama.

Malakai's school has been incredible, gently guiding and supporting him through the process of settling in. He has made incredible strides in understanding a whole new system and has gone from being allowed to run amok to sitting in his class alongside his classmates. This may sound small, but in Special Needs Parenting Land, this tiny step takes on Epic Proportions, trust me... I am so stupendously happy with this school that I actually find it difficult to put into words what they are doing for him... and in turn, for me.

So yes, I am a bit late for the New Year. But trust me, the New Year has been the last thing on my mind. Now that I'm all caught up and officially residing in 2014 in both body AND mind I am looking forward to everything it has to bring.

Photo credit: www.surreyhills.org

Tuesday, November 26, 2013

Super soggy days

Thank goodness Harlan loves his wellies (he even wore them right through summer in South Africa), because we landed in the UK and just as I remembered, this place is seriously soggy. And cold. And soggy.

Despite my excitement to finally be getting out of 'limbo' and to be reunited with my husband after 6 weeks apart, I was overwhelmingly distressed at the thought of our upcoming flight to the UK - all 11 hours of it - with two small boys who have their own Life Equation now (check last week's post for the long explanation)...

Good grief was I worried!

But thankfully the flight was overnight and so it actually was simply smashing (see, I'm practicing my Proper English) - other than the fact that Harlan kept asking when we were going to get in the plane and he still refuses to believe that we flew anywhere at all, never mind to the other side of the world...

"But sweetie look," I gesture around the plane, "this is the plane. We are sitting in it."

"But where is it?" Sulky face. "Where?"

"Here... right here. Like all around us," Ummmm, and now?

So, despite the fact that Harlan doesn't believe we went on a plane and flew anywhere we are all doing splendidly (see, Proper English again) in one of the most beautiful parts of the English countryside where there must be about a gajillion trees (all very very pretty) and even then there still aren't enough of them to drink up all the water in the ground, so wellies are a must!

I think we are kinda like Vaalies at the beach in Cape Town, running into the freezing water simply because it's a beach, but all the locals know its crazy freezing? Well, we are kind like that - bundling the boys in warm jackets, gloves and hats and kinda pushing them out of the toasty house and into the freezing cold to 'explore' and 'get out' and other ridikilus things!

Here is a little taster in pictures :)





















Monday, November 11, 2013

1+1 = 4 x C to the Square root of Chaos

 


I never was the most gifted student of mathematics, and as someone who loves language as much as I do I was shocked to recently discover that mathematics is a bit like another 'language' and that I should in fact like it if I like language so much...

Nah...

Not my thing.

I was so happy when I wrote my matric maths final paper way back when (let's not mention how many years ago that was!) and I think I closed my paper and myself on maths. Beyond the most rudimentary of addition and subtraction when I need it most, I steer clear of sums of any kind. I just don't have it in me...

So I was understandably excited the other day when I met another dad who agreed with my suspicions on additions to the family - that is to say that one child is one child, of course, but adding another child to the equation does not equal two... well not in terms of work involved, the attention forcibly demanded, and the overall effort needed to get from morning to night without needing to crack open a bottle of scotch.

No.

1+1 simply doesn't = 2

Why is this simple act of adding another child to a family such an upheaval? Why does it feel like we now have 22 children instead of two, like we missed something along the way that we were supposed to read or know or learn? I had to start to think, and because I'm just not that good at mathematics, I couldn't use figures to well... figure it out.

This is my theory though - and I think I've kind proved it when I happen to have just one of the boys with me instead of both, which by the way is a total breeze and makes me feel almost like a good mom again - but I digress... The reason that two kids equals the effort of having 22 kids is because they are boys (yes, this matters... and no, all you moms to girls only... girls simply don't get anywhere near the chaos of boys), and because they wired to do several things seemingly simultaneously and with such agility that I sometimes feel like I'm in the middle of a guerrilla warfare, not sure of which way to turn...

I like to call my theory the 1+1 = 4 x C to the Square root of Chaos

Compete
Two kids like to compete for space. For attention. For who gets what first. For more attention. For who spoke first. For more attention. For who broke what and when. For more attention... and... ummmm... for more attention (I think that about covers it).

Compare
Yes, they want everything that they other one has... all. the. time. It can be a completely useless broken clothes hanger (this is not a word of a lie) and the other one will want the exact same thing, in the same colour, broken in the identical way. And you're like, "oh no, I would never give into my children in that way..." but I do, and you will too. Just wait.

Conspire
Just when you think your children will never stop competing and comparing, they do something even worse... conspire. The team up like a crazy little two-pack and just attack; hanging off my arms and legs, jumping all over, giggling as I trip all over the place and try to get them into the car without having one of them land under oncoming traffic. I have had mornings dropping the boys at creche where I just hang my head I leave and exhale... seriously. And then conspiracy usually leads to the last 'c'...

Crash
You just know it... this is going to end in tears. Someone is going to have a meltdown. There will be snot, and maybe even blood, and definitely screams and accusations and a total drama...You're just not sure exactly how it will happen, but it's coming and that's no lie...

So, that it exactly why 1+1 does not equal 2! Because with two (or more) invokes the  4 x C to the Square root of Chaos. But I've learned a few things in my last almost-four years of rearing 22 children, and there are a few antidotes - the two most popular being smiles (your childrens', which will just make you instantly forget everything a bit like the zapper thing on Men in Black) and naps (please refer to my very important post about this) which give you time to recharge and regroup, ready for the next round...

Monday, November 4, 2013

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.













Monday, October 21, 2013

"The Talk" part 2

So, it’s late in the evening and the boys and I are chilling on the floor in the lounge. They’re both calm and happy, so I take this as my opportunity to have ‘the talk’ with them. Out of habit I talk to Harlan first, asking him if he wants to know why his brother struggles to talk and his tummy doesn’t listen to him (code for: Malakai still wears a nappy at the age of 5 years)?

Harlan says ‘yes’ and I internally kick myself; speak to Malakai first fool, he’s the one with the Down syndrome! So I turn to Malakai and say, “Hey babe, you know how we visit Karien, Susan and Nadine every week (his therapists)? And you know how you sometimes struggle to speak clearly?” Malakai nods.

So I jump in with both feet and pull out my iphone – yes, you heard me. I follow a number of Down syndrome organisations on Facebook, so open them up and show Malakai and Harlan some pictures of the young kids, “Kai!” says Malakai as he looks at the first child, obviously thinking he’s looking at himself. I take this and run with it, “Yes, you see, there is a little boy that looks like you babe; see Harley? This little boy looks like Malakai a little bit?” Harlan nods. So I go through a few more pictures and show the boys, explaining that there are many little children who look a little bit like Malakai.

“This is because Malakai has Down syndrome,” I say as nonchalantly as I can muster. “You see guys? And this is the reason why Malakai needs help to talk clearly and his tummy doesn’t listen to him. Because he has Down syndrome. But there are many little kids with Down syndrome, see?”

”Like my brother?” Harley asks? “Yes angel, like your brother. And there are many brothers and sisters in world who are like you, with a brother or sister with Down syndrome.” This, I think flies over his head a little…

“So,” I soldier on while I still have their attention, “This is why Malakai is a little different, because he has Down syndrome. Can you say Down syndrome?” Harlan says it and Malakai tries. “And, this also means that Malakai has a different set of rules to us Harlan. You, me and daddy – we don’t have Down syndrome and we have a set of rules. And Malakai and other children with Down syndrome – they have another set of rules…” But by now the kids have both lost interest and my words are pointless.

So, we’ve taken a step towards naming Malakai’s learning difficulties, and I will have to talk about it often and in passing so that it becomes part of our family’s (and the kids’) understanding of who we are.

I am trying to tread carefully between defining ourselves as a family touched by special needs – it is an integral part of our lives, of course – and also carrying on as normal, because although Malakai has Down syndrome, it is not the be all and end all of our lives. Not at all.

So it’s kinda like wearing glasses – you know you need them, you can’t function optimally without them, but they don’t make you who you are. You have them on every day, they go everywhere you go, you never really stop ‘seeing’ them, but they aren’t uncomfortable or embarrassing or horrible or anything – they just are.

That is the balance I am trying to strike between the fact that yes, Down syndrome is a big part of our lives and almost everything we do includes it in some way, but that it’s really very run of the mill, okey-dokey, seriously not a laboured and horrible and sad thing at all. Like a pair of glasses, once they’re on, you don’t think about them anymore. They’re just there.

Get it? Got it!

Monday, October 14, 2013

"The Talk" part 1

So, I’ve been seeing an educational psychologist because sometimes I just don’t have all the answers, no matter how badly I’d like to believe that parenting is wholly intuitive and Love solves almost any challenge.

You see, while I understand that discipline is probably the hardest part of being a parent, I have a little conundrum – Harlan and Malakai just don’t listen, but for two very different reasons. Harlan is a stubborn little guy, and getting him to play along with anything that’s not part of his original agenda is practically impossible. And of course, the agenda of a 3.5 year old boy is often very far removed from the values that I am trying to instil in my children – patience, courtesy, thinking of others and so on.

And then there’s Malakai, who for all intents and purposes is functionally deaf. His auditory processing is so poor because of his Down syndrome that I can repeat myself a million times and he’ll still not listen. Add to that another factor that is common with Down syndrome – a poor impulse control – and I am like a broken record.

So. Two kids. Neither listen. Malakai for developmental reasons and Harlan because he’s seen and learned from Malakai that listening is not something we need to do…

Then the psychologist suggested something I have not actually thought of – and I’m not sure why it never occurred to me. She suggested we talk about Down syndrome and how Malakai lives by different rules…

Our conversation:

Psychologist: “Tell Harlan that Down syndrome means that his brother has a different set of rules to the rest of us.”

Me: “Ok. But I haven’t told Harlan his brother has Down syndrome. In fact… I haven’t told Malakai he has Down syndrome…”

*gulp*

It’s true! I have never told Malakai he has Down syndrome, and while I’ve mentioned in passing to Harlan that Malakai needs extra help with some stuff in life, I’ve never actually given it a name – Down syndrome.

Psychologist: “Oh, I see. Well I suggest you talk to both of them. It’s good to give Malakai’s learning difficulties a name. Show Harlan pictures of other kids with Down syndrome. Show him Malakai’s eyes, his hands, his feet, and other markers of Down syndrome. Then they can both understand why there are different rules for each of them.”

Me: “Um. Ok.”

Firstly, it brought back to me the day that Malakai was born and how the paediatrician pointed out all his markers. “You see here…” she said matter-of-factly, using her manicured finger to point out the physical features that suggested Malakai had Down syndrome, “Here on the inside of his eyes, that fold? And here on his hands, a single crease? And here on his feet, a large gap between his big toe and the next? And see how short his fingers are…”

Ugh!!! I hated to see my child as a set of ‘physical markers’… he was not an encephalitic fold, he was not a single palmer crease, he was not a sandle-gap, and damn-it, my fingers are very short and stubby! So, from that day I ignored these features, except in moments where I would secretly glance at them, a reminder of my son’s different-ness. But we never talked about them, because what the hell for?

Until now, like a dork I needed to be told by my children’s psychologist that I need to have ‘the talk’ with my children. And I am not sure why I never thought of it before? I suppose it may have something to do with the fact that we not only choose not to, but we really and truly don’t see Malakai as that different from his brother or any other kid for that matter. We are not delusional you see, and of course we see he’s delayed in many areas, but he’s just not that different. He’s just Malakai to us…

But I understand that this attitude may not be the best when it comes to setting rules in our house – rules being an important part of parenting. Expecting Malakai to follow instructions when he clearly struggles with this is unfair of us, and because we instinctively know this, Harlan sees how we compromise. Then, Harlan - being the industrious little boy he is - takes this as a sign that listening is simply not that important in our house, and we’re left with two kids who don’t listen and one mom who is about to hit the roof out of sheer frustration.

So, we’ll have to have ‘the talk’… I am just not sure how I’ll actually do it, and if I’ll say the right thing… Heaven’s alive, I hope I say the right thing!

 

Tuesday, October 8, 2013

Blindsided


I knew it was just a matter of time.

 

And yet, I didn’t see it coming.

 

I knew it would happen one day, and it is something I haven’t yet planned for because, well, I didn’t actually want to think about it.

 

The day that my kid would be targeted as the odd one out. The day that they notice – the other kids I mean. And the day that they not only notice, but act and react to my son’s differences in a way that is just not cool.

 

I knew it was coming.

 

And yet, when it happened the first time I reasoned it away – oh, just typical kids fighting, playing rough, nothing a little bit of guidance (or a time out) can’t fix. The second time was disturbing, like I was in a dream and I couldn’t run away from the monster chasing me, slow motion heart beat in my ears kind of thing. Immediate punishment with time outs was ordered, and there I thought I had nipped it in the bud.

 

The third time (and please note that this has all happened in a matter of an afternoon) I am dumbstruck. Just dumbstruck. And hurt, yes. And hot headed. And confused. And scared. And angry. And pathetically trying to plead with them to include my son – trying not to sound desperate.

 

And to top it off, one of the perpetrators of the nastiness is Harlan. I cannot believe it, I thought that we had a good thing going with the boys, I thought that Harlan would always stand up for his brother, I thought that they had something special. And here Harlan throws Malakai under the bus, in a way that is cruel and mean… I stand for Malakai with a fierceness that was born the day he was, a fierceness that says that I will do anything for my son, and there I stand facing my 3.5 year old son and wonder how he could have taken part in this shaming of his brother?

 

It is so difficult to keep calm and level headed, guide and speak and empower when all I want to do is grab these tiny terrors and slap them. But I have to keep a level head about this, what I do now will matter greatly in the way in which our family goes forward – so there is no time for my pain, my fear, my anger and my sadness… 

 

I knew the day would come – I just didn’t know that it would be this complicated.
 

Thursday, August 29, 2013

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).

Tuesday, August 20, 2013

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!

Tuesday, July 23, 2013

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.

Wednesday, July 17, 2013

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 21st 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…