The Good Life

Special Request

2011-11-07T16:52:00.000+02:00

It is for a very special reason that I am proverbially "shooshing the dust" off this little precious blog of mine - and the reason is little Jude, a newborn baby boy born to a loving mom and dad.

Jude was born with Down syndrome, diagnosed shortly after birth. I have spoken to his mom and dad about how beautiful he is and that everything will be ok (as we know it to be in our wonderful community, no?).

Jude is facing a few challenges though that I would appreciate any feedback or assistance with from this wonderful online community that I know supported, loved, and shared with me when it came to Malakai.

Jude has heart issues, as well as cataracts on his eyes and hearing challenges. Moms who have been here and done this, please can you email me directly or comment on the blog with your thoughts, tips, inspiration, ideas, links etc.?

It would mean the world to this mom and dad - they need a little upliftment and Jude needs everybody's well wishes and prayers.

Thank you so much moms and dads - you rock (as always!).

Indefinite Pause

2011-07-21T21:16:00.001+02:00

It is with great love in my heart that I push the pause button for an indefinite period on this blog. My beautiful son is about to turn three years old, and as if on cue, it has become harder and harder for me to find the time or the subject matter to put on this blog. I have for a while felt too busy to get there, and too stifled by the need to write only about parenting and Down syndrome… I just feel that our lives are about so much more than that – so much more…

If I had known three years ago the amazing journey that my son, Malakai Steven William Stow, would bring our family on, simply by virtue of his birth and the revelation of his additional chromosome, I would never have believed it!

It was a day filled with such pain, confusion and a raw kind of truth… But it was just the first step along a journey that has stripped us bare, down to the truth of ourselves, in the search of our most basic needs, while at the same time gently covering our nakedness with layer upon layer of love, beauty, generosity, perfection, and grace.

I cannot even begin to put into words the sheer magnitude of the past three years – and so, I am going to try, in a new blogmoir… half blog, half memoir. I don’t even know what it’s going to be called or when it’s going to start – but I will certainly post it here.

In the meantime, thank you to everyone who has followed our journey and who took the time to comment, share and give so readily of their love. This blog and the global community I found myself in was certainly one my biggest saviours in the early days and a big reason for many smiles over the last three years.

So, here is an indefinite goodbye and take care. XXX

i. can. talk.

2011-07-01T10:33:00.002+02:00

I wanted to mark this day - the 1st of July - as one of great importance to me. And it is all a rather long story... so sorry in advance!

As a child, the moment I found my voice and words I ran with it. My mother often tells me that she always knew where I was and what I was doing because I talked constantly. I talked to myself, my dolls, my dogs, even to flowers and stones and insects... Everything was alive in my mind, there was no difference between talking to my sister, my dog, or a stone - I shared my fantasies and thoughts with everything that crossed my path.

Words were very important to me and this love for words never faded. As I grew older, it became a passion for reading, then a passion for writing. And when I had nothing to write about, I would find inspirational writing and just re-write it in one of my countless notebooks. Just for the feeling that I got when putting pen to paper. Just for the feeling I got when words were strung together in such a way that it made my mind stop and my heart open up.

Then Malakai was born and we went through our process of grieving, acceptance and eventually the daily celebration as he continually showed us just how amazing he actually was.

But Malakai was very quiet verbally. In fact, he was so silent that he only really cried for the first time at 3 months and only started babbling well after his first birthday. I knew this would be the case, and I always wondered how I would teach my son a love of words, like I had, when he wasn't able to use them. It broke my heart.

But we started early - with signing and with literacy (using the Love & Learning programme). The research was clear on signing and looking a bit deeper into the literacy programme revealed how children who are visual learners learn language not by hearing it, but by seeing it (through sign and letters).

By 18 months Malakai was signing 30 words regularly and had about 150 signs that he could do when prompted. At 2 years old, Malakai could sight read about 20 words as well. And from the day he was born, he has had an absolute love of books. He will choose to read above all else - and so, I knew that he had my love of words as well... but he expressed it in his own way.

So, today when my son said the word 'bus' as clear as day, pronouncing all three letters clearly, and he could repeat the word at will when I asked him to... I just beamed from ear to ear. My son is talking. He is saying whole words clearly from beginning to end. He is talking.

I couldn't help but cry after I dropped him off at creche this morning, after singing the wheels on the bus all the way there in the car. My boy has been talking with his hands and gestures for almost three years and today we've opened the door to verbal speech just a crack, letting the light through and filling us with possibilities.

Happy birthday Dada

2011-06-13T11:00:00.000+02:00

To my husband - we love you dearly. You are so precious and special to us, we love having you in our lives and hope that you know how needed and loved you are. XXX

Shaving cream anyone?

2011-05-30T15:54:00.002+02:00

Now... anyone who knows Malakai knows that he's a bit of sensory-junky. He just loves shaving cream... uuummm... really really loves it. As for Harlan, well, he's keen but not so much! LOL!

In the garden

2011-05-30T15:54:00.001+02:00

Like any other toddlers, my boys are happiest when they are outside, running amok. Thanks to my mother, we were able to clear out a very overgrown piece of garden on the side of our house and create a garden especially designed for the boys to enjoy. It has been over a year now, and are they ever enjoying their beautiful space! Thanks mom!

Out and about

2011-05-30T15:54:00.000+02:00

We are really blessed to have so many fun and kiddie-friendly places to visit - this was a lovely morning spent with the boys.

Saying goodbye

2011-05-30T15:53:00.001+02:00

My sister has been gone (in Australia) for just over 4 weeks now... I do miss her terribly and will forever cherish our last weeks together. It was filled with so much love, chaos, fun, laughter and joy...

My niece, Natalia

Malakai & Natalia

The three 'Ls' - Leigh, Lorraine and Loren

Our last pic together

My niece and I...

FLASH!

2011-05-30T15:53:00.000+02:00

I have been taking photographs lately... I just haven't ~~made~~ found the time to edit them and get them onto the blog. So the next couple of posts will be simply pictures (and a word or two)... Enjoy grannies!

OK... so every now and again I get a bit of a bee in my bonnet when it comes to playing a bit of 'dress up' with my boys. This doesn't come around often because I know that within 15 minutes whatever gorgeous, colour-coded, matching outfit I've managed to scramble together from what is actually washed and in the cupboard, will just be covered in mud, juice, biscuit crumbs and bits of toilet-roll-inner...

But nonetheless... Here are my boys, dressed ever so smartly for their cousin Jack's birthday party! Aren't they just super adorable?

It's not acceptable

2011-05-26T10:17:00.000+02:00

This is to the point and honest - just do it people, eradicate the r-word from your vocabulary today.

Talk to me baby!

2011-05-24T16:18:00.000+02:00

One of the first things I decided to do when I received the diagnosis that Malakai had Down syndrome was to invest in sign language tools. I bought books, flashcards and even imported DVD's from the United States.

Why?

Well, as a big talker and communicator myself, I tried to imagine a day where I was unable to communicate with others and share what I was thinking and feeling - the idea of it made me rather want to die than to be alienated.

So why would I ever knowingly put my child in such an awfully frustrating position?

It took Malakai a good 18 months of daily sign demonstrations before he started to really take off with using signs regularly and today, at just under three years, he can do over 150 signs and uses about 30-40 on a regular basis to communicate, share, ask and express his feelings, thoughts, ideas, understanding of concepts and love for us.

I really incorporated signing into everything we did and forced myself to keep it up - knowing that I was potentially giving him the biggest gift of his life.

The payoff has been immense. Oh yes, there are studies that point to signing increasing literacy and language acquisition, and yes it has meant that I have made sure my child doesn't exist in a world that is devoid of his input... Those are all very important benefits.

And yes, my son is now signing two and three word sentences and has been sight reading words like 'dog', 'cat', 'more' etc since he was two years old. I know that he's able to communicate in sentences and read simply because I have ensured that he was given the ability to sign.

But the most important benefit, in my opinion, is the way that signing has enabled me to really understand just how bright my child is. I can see his understanding of concepts, I can watch his knowledge grow on a daily basis, and this is mostly through his ability to sign to me.

I see my child differently, I see his ability far more than I see any disability. That is the beauty of signing, of sharing, of talking with my child far earlier than simple verbal motor planning skills would have allowed. I see my child as able, competent, clever, and oh so expressive!

The fact that parents of children with Down syndrome still sit today and question whether they should do sign language with their precious children simply confounds me... Why would they not want to give their children a voice? Why would they not want to share and talk and communicate with their children?

Signing has been the single most important intervention that I decided on for Malakai's development and I think that every single child can benefit from the ability to communicate.

Say whaaat?

2011-05-16T21:49:00.000+02:00

It has been a long slog... For those who follow my blog, you'll remember our months and months of sleepless nights. Our excellent sleeper (read: Malakai) did a full 180, and became a not-so-excellent-sleeper.

Here is my sheepish conclusion to our sleep-debacle.

Malakai has mysteriously started sleeping well again. How? Well, damned if I know - seriously. I wracked my brain (and doubled my caffeine supply) for months trying to figure out what was going on, I visited many doctors and came up with many hypothesis (in the complete absence of any of the doctors taking me seriously or proposing a solution that worked).

I must say, initially I wasn't concerned. I put his lack of sleeping down to teething, a new brother, winter colds and flu - y'know, the regular stuff. But then it went on... and on... and on... and it got worse with more frequent wakings and more moaning and less and less of the good stuff - sleep.

I went from mention his sleep issues in passing during routine check-ups, to specifically asking his doctors if there was something we should be looking at, to taking him for specialist tests and researching the Internet for answers, links, clues - anything.

Eventually I recorded his nighttime antics and got Malakai to a ~~friggen expensive~~ paediatric neurologist. Eventually! A doctor who agreed that what she saw on the video tape was very concerning - at last, someone believed me! At last, I didn't feel as though I was making this all up - she saw it too!

And then what happens? A week later Malakai starts sleeping through again. Mysteriously. Without any warning... much to my excitement and I must admit - dismay as well. Why? Well, now I do feel like a completely neurotic attention-seeking mother... and I don't like it. Because I was worried, for months!

So, we did a sleep EEG and sleep study anyway - just because it was scheduled and we had the ~~very expensive~~ doctor's expert assistance at hand. And, the tests came back clear - good news and all.

So here we sit with the mystery of the 9 - 10 months of no sleep, the disturbing sleep behaviour that even had a paediatric neurologist concerned, and it all just disappears. ~~I give up~~. Is it possible for sleep issues to occur, disappear and then reoccur? Well? I can't say because honestly I am sick to death of trawling the Internet for information... I am all infomationed-out.

I am, however, open to the notion that because Malakai has Down syndrome I may take things a bit more seriously. And yes, many doctors looked at me as if I was crazy - "your toddler isn't sleeping? ha ha ha! join the legions of other mothers..." But I have a problem with anything that can potentially put a bit more distance between Malakai and his Full Potential (that shiny thing in the distance that is currently just a fuzzy concept...), and months of sleep deprivation does not a healthy learner make... So, yes, I think I may have been more concerned about it than I would be if Harlan suddenly decided to stop sleeping (that is, of course, purely hypothetical, because he has never slept well).

Am I the only one out there? Or are other mothers who've been blessed with children with special needs as anal and demanding and fierce as I am when it comes to their kids? I don't think I'm alone... I hope I'm not alone...

Precious

2011-05-11T16:09:00.000+02:00

I just finished watching the movie "Precious". Very seldom do I think that a movie comes along that really takes difficult topics head on. No holds barred, full steam ahead, calling a spade a spade... whatever way you'd like to describe it.

But I am left wondering what I have just witnessed.

Did I see abuse, dysfunction, darkness and despair? Yes, I think that was pretty obvious. But I think I also saw hope, redemption and prayed and cried and urged Precious to find the strength to make it better.

But how? How do you find the faith to move in a positive direction when all you've ever heard is that you're stupid, fat, useless, and unlovable?

Oh my soul - that another human being has to be brought into the world hearing those words come from their mother's mouth. I just cannot comprehend it - and yet, I know it happens. I know it's out there. I know that too many children have heard those words.

And yes, the fact that Precious' first child was referred to the entire movie as 'mongol' did not escape me. Was I offended? No. Was I terribly hurt for that child? Yes. Did I appreciate the honesty and understand that this does happen? Yes.

The movie ends as Precious takes her first daughter (who has Down syndrome) and her son and walks away from her mother (and hopefully her past) forever. And we are left wondering if she'll make it. Can she make it? Lord, I hope she can.

And I am left not wondering about the movie as much as I'm wondering about the world in general.

Just recently the world celebrated the death of the nortorious Osama Bin Laden. Yes, I think his death was news-worthy and yes, I think that may help to finally bring the whole 9/11 atrocity to a close.

But as I watched the news coverage that day, just over a week ago, I remember thinking clearly to myself - 'Have we lost our minds?'.

Yes, I know that his death is important and that he caused the deaths of thousands of innocent men, women and children. That because of him families are without fathers, mothers, children and siblings that they loved dearly.

I get all of that.

But lets rewind even further - why the hell did he spend years and countless amounts of money planning to fly planes full of people into buildings full of people? What the hell for?

To prove some ideology?

And then to retaliate and spend more countless amounts of money on wars all over the place for what? What? And how can anyone defend spending this kind of money - when there is even one Precious and even one child being called a mongol in this day and age...

Can we not look at our own back yards and just fix the terrible mess that is growing there? Can we not decide that life, dignity and love are important? More important than revenge, war, money and industry?

How can we, as citizens of the world, be ok with spending billions on destruction, war and death when only a fraction of money is being spent on making this place - this planet - inhabitable and sustainable for everyone on it.

When is it going to stop being about us and them, and start being about everyone? Every single human being.

When is giving every human being the means to reach their potential going to be our top priority?

But hey, I am not a head of state and I certainly don't know what it's like to be in that position. I am a mother though, and I have a son with a disability, and I know that most people just want what I want - to be safe, loved, at peace and hopeful for a better future.

Growing and Learning

2011-05-03T22:57:00.000+02:00

Today, Malakai's therapist asked me if there was anything that his teachers thought he needed some extra help with, that they could address in future therapy sessions? Well... um... I hadn't actually asked... *ahem*

So, when I dropped Malakai off at creche after the therapy session I dutifully asked the teacher what I am pretty sure I should have asked before this morning (...embarrassed face...) - what areas can we work on at home and in therapy to make sure that Malakai is not lagging behind in any areas?

The answer my friends? Not much. Yes! Not much!!

According to Malakai's teacher, the only areas where he's a bit behind his typical friends is in speech (which we know already) and running (ok...).

So! I am utterly friggen pleased with my little man! He is fitting in so well and really taking part. He knows just as much as his friends do and his teacher tells me that he's actually ahead them with his ball skills.

Oh. My. Fluttering. Heart. be still...

I know, I know... speech and running. Yes, yes, yes. But these things we know - Malakai is delayed in speech, but he's using sign language so well (he knows over 150 signs and uses about 30 on a regular day-to-day basis). We know what he wants, he knows what he wants, his teachers know what he wants, so we're pretty satisfied that he's communicating, even if it's not in the traditional sense.

As for running - you should see it. Malakai runs as if he's an Olympic athlete crossing the line. Head back, arms stretched out behind him... It is too cute. However, this running-posture (for want of a better word) does not a sprinter make...

So - my son's a bit of a slow runner. I'm really not crying into my lap about that one!

What I am doing is having a little party in my heart for my beautiful boy - I am celebrating his spirit, his determination, his joy, his ability and most of all, his humble little offering of himself - in all his "wondrousness" - to his world.

You go my boy.

Just the other day I asked my husband if he thought, on the day that Malakai was diagnosed, it would ever actually be this... well... normal?

And it is. Life is life. Our son is loved as any other son is loved. There is no difference in our hearts, and there is no difference in reality. He is simply perfect - extra chromosome or not - just as he is.

Pix Fix

2011-04-04T16:27:00.000+02:00

You'd think that for a mother, photographer, and someone who just lost every single photograph of my boys taken in the last 18 months (courtesy of my computer crashing...) I'd have been furiously taking many more pictures to fill the gap?

Mmmm?

Well... no.

As a person, I used to be very organised - all my priorities in place and colour-coded. Not anymore. No.

Besides, I often find that if I'm photographing a 'moment', I'm not really there to enjoy it...

Anyhoo - I finally took some pictures of my beloved boys this weekend and I am rather sad that Malakai is just not that into smiling for the camera anymore. In fact, as time slips through my fingers, he's becoming more demanding with what will make him smile (and laughing is even more difficult).

So, Malakai is my serious boy right now - with the very occasional smile.

Please note: Malakai does not have a skin disease - that's shaving cream... and in the last picture he's singing... aaahhh cute!

And Harlan is still my little smiler - so easy to amuse!

Jumping for Joy?

2011-03-26T20:26:00.000+02:00

I am sitting at my dining room table, it is very quiet and I can hear the crickets singing their melodic chorus outside in my garden. The boys are asleep (for now) and hubby is at the rugby, so I am enveloped in my own wondrous company!

Not that I think I'm wondrous or anything - just that I have always been a person who simply loves to be alone, to do my own thing, to read, ruminate, clean, totter around... Not easy with two little ones under 3 years! So, whenever this happens, which is about once a month, I just relish in my alone-ness. I let it wrap me up like a big fluffy just-washed blanket.

As always, life is busy - I actually wish I had another expression, because that one is getting really old now. Hmpf! But it is what it is! I am pleased to have a new client, and the prospects are very exciting! It does however mean more work at this point - but I am okay with that.

Harlan is growing bigger and more adventurous everyday, but he's still amazingly attached to me. He seems to get severe separation anxiety and isn't very social with other little ones - shame! I think he's actually a little wary of other kids because his big brother (*ahem*) is rather brutal with him.

I am amazed at Harlan's complete focus and determination to understand how things work, how they fit, how they stack, how they fall, how they taste, how they feel, and how they break... He can busy himself for ages on simply screwing the top on and off a bottle.

Malakai, on the other hand, is going through a phase where he wants tons of input. He wants to be shown, he wants to learn and he wants an adult to be by his side. But, he's doing so well as school - he actually doesn't want to come home when I collect him in the afternoon.

The other day when I collected him, he saw me coming and quickly scooted his butt onto the collective blanket where all his friends were sitting. I called 'Malakai!' and he looked the other way! It was so funny!

Otherwise, I am having such a pain of a time disciplining Mr M - still! I just don't know if anything is sinking in... His latest is to run past Harlan and grab some hair and carry on running! Seriously! I just don't know... And he knows he's being naughty.

Also, as Malakai gets older I see both his amazing strengths and I am starting to come face-to-face with his weaknesses. I cannot believe that Malakai can read, that he understands so many signs, that he's so darn clever! He really is an incredibly bright little boy.

On the other side of the coin, we're working on 'jumping' at physio at the moment, and I catch myself thinking how strange it is... we have to teach Malakai how to do something that his cousin (who is much younger than him) can do already with no problem. And he hates it too... Where most kids literally jump for joy. Ai ai ai... I am sometimes reminded that Malakai actually does have special needs - which brings me to the next thing.

The fact that I have to be reminded that my child has special needs is testament in itself of how this journey is just so beautiful, so fulfilling, so amazing. Yes, I sometimes want to cry because my son needs to be taught how to jump, but for the most part he's just my really amazing, very clever and incredibly loving son. I love that we we are blinded by Malakai's ABILITIES!

Finally, I have found a fantastic doctor. In South Africa we only have roughly 5 paediatric neurologists, and so the wait for an appointment can be between 10 - 12 months. Luckily I discovered a newly qualified PaedNeuro and had to only wait one week - ONE WEEK - for an appointment! That is really amazing!

Anyhoo - we had a one hour session and we covered everything from birth to current day. We spoke about Malakai's development including physical, emotional, sensory, behavioural - you name it, we covered it! She was so thorough! Then, I showed her Malakai's sleep video and I held my breath. I think I have just been told so many times that I'm losing the plot that I was afraid she'd think so too.

Thank heavens she agreed that Malakai was not behaving normally in his sleep! Yay! I am not mad!

So, we now have to wait for a sleep study (any tips from other moms would be awesome) and an EEG. Once again though, not many people who do this in South Africa, so I have no idea when we're going to get an appointment. The reason we're doing an EEG is because the doctor suspects (from watching the video) that Malakai might have nocturnal epilepsy. The EEG might confirm this or it might not even pick it up (as often happens, even when epilepsy is present). However, the sleep study should also narrow things down a bit for us!

I cannot express how relieved I am that we are finally taking action and might actually have a diagnosis for Malakai's sleep issues sometime soon. He is so amazing, so gorgeous and so beautiful - imagine what he's going to be like when he's actually getting a good night's sleep? Can anyone spell 'a.n.g.e.l.'?

Anyhoo - that's us for now. Back to some awesome 'me time'!

Its been so long...

2011-03-08T15:45:00.000+02:00

I regret to acknowledge that I have totally neglected my blog these past weeks, and I am so terribly sorry. Not only have I now got a ton of things to say (which makes for very arduous reading), but I have also lost track of my favourite blogs - the reading of which brightens my days and gives me constant hope and reflection.

By way of an attempted apology, I'll use sub-headers in this post, so that you can just skip right past anything that doesn't tickle your fancy!

Work, work, work...
I have been working my proverbial backside to the proverbial grindstone... I have a new editor and she's getting things into the kind of shape she likes them to be, which means working very hard on two week deadlines (that usually take four weeks). This has been the biggest reason why I haven't had any time for anything but work, sleep and kiddies.

Sleep, or lack thereof
The second reason for my lack of time has to do with the fact that the boys are not just waking up at night - they're starting their antics as early as 8:30pm (and they go to sleep at 7:30pm...). Now any self-respecting mother and father will know that this scenario leaves you with... well... no time whatsoever to relax, catch up on emails, watch a movie, or just vegetate on the couch with a good book. It's all work, kiddies, work, kiddies and a few much needed hours of sleep here and there.

Sleep Training
Which brings me to sleep training... aaahhh...
I have admitted to anyone who will listen that I am completely and obviously useless when it comes to sorting out my children's sleep habits - so I've brought someone in. For roughly the price of a four-star hotel per night, she comes in and is sleep training Harlan for me.
So, I've had two good night's rest and Harlan is halfway towards sleeping through, bada-bing bada-boom!

Sleep Issues
Following Harlan, the sleep trainer will move onto Malakai the with singular focus of telling me what on earth is going on with him. I want an expert (and outsider's) opinion as to whether Malakai's sleep issues are behavioural or not. Which brings me to my next point...

Munchausen by proxy syndrome (MBPS)
A condition where mothers often 'create' illnesses for their children (either by pretending or actually harming them) in order to get attention. Not a nice thing, no. But I am at the point with our family doctor where I feel like I'm carrying a big board around my neck that says "Hey, my name is Loren and I have MBPS".
We've ruled out benign joint hypermobility syndrome, we've investigated restless leg syndrome and ruled out 2 of the 3 major causes (iron deficiency and thyroid disease). And now the third, and possibly most relevant cause for restless leg syndrome in terms of Malakai's Down syndrome is a dopamine deficiency (which has been proven in Ds).
But the doctor is just not willing to take the route of treating dopamine deficiency because of the kinds of medication used, although I have read that toddlers can be given the medication if the pros far outweigh the cons (i.e. constant lack of sleep affecting ability to learn, function etc).
And, when I ask him to check Malakai's dopamine levels he looks at me like I have MBPS. And, when I look at myself, I ask that question as well - am I taking this too far? Should I just accept that Malakai will not sleep?

Well that's it for now folks - life is busy and now that we are making progress (for which I promise not to take the credit) with sleep, things just look more manageable. Sleep is an amazing thing, and prolonged lack of it can seriously turn your life grey.

Here's to getting some sleep - for ALL of us!

Sleepness nights

2011-02-14T20:38:00.000+02:00

So... The one thing I used to thank my lucky stars for was the fact that Malakai slept like a log, from eight weeks onwards. In fact, I was probably one of those annoyingly smug parents who all the other sleep-deprived-parents wanted to smack. I couldn't help it... but I was very very grateful.

Then Harlan was born - and he didn't believe in sleep. It's just not really his thing. And that's ok, I've come to terms with it (it only took me about a year... but I've accepted it now).

This post is not about Harlan though - because I know his night-time wakings have always been a part of who he is and he's used to crying and seeing his mom arrive to comfort him. Don't even talk to me about sleep training...

This post is about Malakai. He's not sleeping anymore. For the last six months or so, he's slept terribly! Now, I understand that children with Down syndrome do tend to have poor sleeping habits - they have a high incidence of obstructive sleep apnea as well as more time spent in lighter-sleep-stages than a typical child.

However, Malakai seems to be really uncomfortable in his sleep, as if something is hurting or annoying him. Of course, the first thing I did was to consult his ENT specialist, who told me that Malakai's tonsils and adenoids are perfect - so there is no chance that he has obstructive sleep apnea. OK - tick that off the list.

But he continued to wake up moaning and tossing and turning 5 out of 7 nights a week. I decided to give him neurofen, a painkiller, and after this he sleeps like a dream. I spoke to his GP about this and she confirmed that neurofen does not induce drowsiness, so if he was just being naughty, he would continue being naughty. But because he sleeps afterwards, it means that he IS in pain and the neurofen soothes this and he's able to sleep.

So - if he's in pain, what is it from? I started researching, because when Malakai wakes up moaning, the top half of his body is still and he's constantly stretching, rubbing and kicking his legs. So I thought that perhaps it could be his legs?

So - my friends - I am finally at two possibilities and wanted to know if any Ds Mamas out there had any experience with either of these?

It could be Restless Leg Syndrome, which can affect children as young as two years old (and Malakai is 2 and a half). It is characterised by legs that are sore when they are AT REST, so the person wants to move them in order to soothe the pain. It also happens often at night and affects the quality of sleep. It is neurological disorder that is caused (in part) by the underproduction of endorphins (and I believe this is the case with children with Down syndrome?). At this point, I have no idea how we could treat it if this was the case. I have read that certain medications can be prescribed, but of course, when it comes to a toddler, we'd have to go and see someone who could really help us out here.

The second possibility is something called Benign Joint Hypermobility Syndrome (BJHS). It sounds rather complicated, but its not really. It's a condition that often affects people who are double-jointed, i.e. have hyper-mobile joints (as is the case with Down syndrome). Because of this hyper-mobility, there is less proprioceptive input from the leg joints, and so these individuals are putting too much strain on their legs during the day's activities (and not noticing it) and when they lie down to sleep at night they feel pain in their joints. For someone like Malakai, who's climbing, running, falling and jumping all day - he could be hurting his legs and not know it. Thing is, treatment involves controlling activity (impossible for Malakai) or psysio-therapy, which Malakai is already attending, to strengthen leg muscles. If I have to wait for his legs to become more muscular, it could be months and months of sleepless nights for him...

What I do know is that I have to sort this out. Malakai is not getting the rest he so desperately needs to be able to learn to his full potential in the day time. And after a bad night's sleep the stinker is still up at 5:30am (as hard as I've tried to change that... another thing I've come to accept... lol).

Any moms out there experience something similar? Any ideas? Am I reading too much into things? Do all children with Down syndrome moan in their sleep and look like they're in pain? It's just that the pain medication actually works and helps him to sleep, but I can't give him pain medication every other night...

Any help or tips would be awesome! Thanks!

Happiness is...

2011-02-07T21:56:00.000+02:00

So... I'm meant to be working... I have deadlines looming over me like black thunder-filled clouds. So, naturally, I'm updating my (non-paying) blog!

I couldn't resist though...

Last weekend, we put Malakai in his little wagon and his dad pushed him and pulled him... I swear I could smell burning rubber (nevermind that the wheels on the wagon are plastic...). The faster Dad went, the louder Malakai laughed and wider his smile. He's a little sensory-junky this biggest boy of mine!

And little Harlan? Well, let's just say he's not so keen on his dad's home-made roller coaster efforts... This was the closest thing to a 'smile' that I managed to catch on camera - the rest of the time he was holding on with white knuckles. Poor monkey!

THAT word again...

2011-02-04T22:21:00.000+02:00

It never fails to sting. Like a petulant bee, refusing to move onto other sweeter things... like putting my winter-frozen foot into a hot bath... When I hear the word, it is as if the world dissapears, morphed into a hazy background. There is only one loud, big, slap-you-in-the-face word... retard.

I gulp. Blink. Divert my eyes. Should I say something? Explain how they are using my son's disability as an adjective. Do they care? Or am I just wasting my breath?

People may argue, they may try to explain it away, that it doesn't mean anything, it's just a joke, it's not meant to harm... but I know. I know because I myself used the word, before my son was born. And I can tell you, it was never used in a positive light. I used it as a way to describe something that was 'less than', something that didn't quite measure up, something that was stupid.

I feel sick when I remember how I used to throw the word around - I often remember how casually I let it roll from my tongue. I'll remember one time or another, when I used the word... while I'm making coffee, or while I'm running a bath. While I'm cooking or while I'm looking in my son's eyes...

I can never take that away. I can never sit from a lofty height and preach to others. But I can stand solidly on the earth and say that I was there - I know what using that word is all about... And it's not good.

It's disrespectful. It's hurtful. It's hateful.

I know this.

Do you?

Will you help me to spread the word to end the word?

If you're still not sure, read this... it might convince you.

The People Who are the R-Word
(by David Hingsburger)

The people who ‘ARE’ what the ‘R’ word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi’s thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a ‘people’ is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a ‘community’ is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one’s ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as ‘gifts’ as ‘tokens’ and as ‘charity’. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The ‘R’ word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Happy Birthday Harlan

2011-01-31T10:35:00.000+02:00

Dearest Harlan,

So here we are my boy - 365 days since you came screaming (literally) into the world. When I think of the last year, what comes to mind the most is your determined spirit. From the first day you were born, you have made your feelings known - that's for sure!

Your first couple of months were difficult for you - and it was terrible for me to watch you being uncomfortable and unhappy, without much that I could do to help. I often worried how you would 'learn' to be happy with so few happy moments to go on... But boy was I wrong! You are about the happiest little guy I've ever met (when you're not tired or hungry...)!

You brighten my day and challenge my resolve, you make me think twice and inspire me to give you the best. Your love for me is amazing - I didn't realise that someone so small could give so much love!

So, in the past year you have gone from helpless little baby to a fully mobile almost-toddler! You are not walking yet, but I am convinced it's because in order to learn to walk, you need to slow down a bit... not something you know how to do!

You do everything at warp speed - you crawl from one place to another faster than I've ever seen a baby crawl (you actually kind of 'run' on your hands and knees...). You climb up on things and want to imitate everything that your brother does... not always safe though my angel!

You love to eat and your favourite word is 'more' - which you repeat over and over again while you eat breakfast, lunch, dinner and each snack in between! You can also say 'ball', 'dada', 'mama', 'woof' and 'juice'. You wave good-bye, do the signs for 'finished' and 'sleep' and you give everyone copious amounts of wide-mouthed kisses!

This last year has been an amazing journey for me, Daddy and Malakai - getting to know you and making you part of our little family. We love you so much and think you're one amazing little boy!

All our love baby boy!

Hooray!

2011-01-21T21:17:00.000+02:00

Malakai's first two weeks at school have all-in-all been a good experience. I really kept an open mind, which helped so much!

Unfortunately he has refused to eat the wonderful cooked lunches (I was so hoping he would see the other kids eating the lunch and buckle under the 'peer pressure', but no luck as yet). So, I'm packing him his standard sandwich and fruit combo - he's really fussy and will only eat certain kinds of sandwiches (peanut butter or bovril).

Also, he started crying when I dropped him off at school in the mornings - I mean, he stuck to me like velcro and his teacher had to literally pry him out of my arms. Luckily, I know of an excellent remedy based on Touch Therapy, which really helps when our little ones are feeling a bit emotionally insecure. Three days of touch therapy and this morning he jumped out my arms and ran to play!

As for the staff - I have watched, waited and not been pushy at all. I wanted them to discover the magic of Malakai all by themselves. I can't claim to know what they were thinking, but each one of the staff members has pulled me aside at some point this last week to tell me what a wonderful child Malakai is - how 'normal' he is... I am not offended by this description at all - I'm just pleased that their eyes have been opened to the possibilities that exist for every child (including those with different abilities). *smile*

Malakai was naturally a bit shy and reserved for the first few days, but his teacher tells me that he's really taking part now, and there are two little ones in his class that he is particularly close to. Everyday, I hear a story that makes my heart beat a bit faster with delight.

I believe that when learning about Noah's Ark, Malakai was the first to 'name' (using signs and animal sounds) most of the animals on the ark! Malakai is also very good at pointing to his various body parts, faster than the other kids apparently? And my favourite so far? During prayers, instead of saying 'amen' with the other kids, Malakai screams "Hooray!" with his hands in the air...

Be still my beating heart...

So - I'd say these first two weeks have been a raging success. They have far outstriped my wildest ideas (if I'd allowed myself to have any... which I didn't, pinkie-swear...).

'The' link...

2011-01-15T22:24:00.000+02:00

I always like to think of myself as a fairly organised and highly inquisitive person. I do well when it comes to gathering information - let's say, I like to be informed, it gives me a sense of control (although I know that much in life is way beyond my control!).

Anyway!

When Malakai was born and we found out that he had Down syndrome, it was something that I knew very little about. I had not even really met any people before with Down syndrome (contrary to every. single. other. person.... who spoke to us in the first few days who all seemed to know someone, or had a neighbour or had a sibling with Down syndrome...)

After the initial shock wore off and I felt that I had truly come to bond with my new little baby, I immediately ordered several books from the internet and went on a mission to learn more about Down syndrome.

Within a couple of months I felt that I knew almost everything that there was to know about Down syndrome... well not everything, but at least everything that was important to Malakai's development and health.

But I didn't know everything. I missed out on ONE BIG THING... I noticed references to Down syndrome and Alzheimers, but I thought that was for when Malakai was older, much older... So, in my natural (and annoying) way of 'taking in only what is neccessary', I kind of skimmed over the subject of Alzheimers, thinking it wasn't relevant right now in our lives.

I was wrong.

It is so relevent, it is scary. I am still kind of struggling to understand it's impact (and I suppose so are the rest of the scientific community...) on Malakai's development, but I do know that it is here - right now.

From what I understand, scientists have discovered one of the genes found to cause Alzheimers on the 21st Chromosome. This gene, called the APP gene, is responsible for manufacturing a protein (called beta-amyloid protein) that, when in too large doses (as is the case with Alzheimers and Down syndrome), causes 'potholes' to form in the 'highways' between brain cells. And when brain cells are not talking to each nicely (because there are potholes everywhere), they tend to die off.

Now, in the general population - this gene becoming 'faulty' and overproducing the bad protein occurs much later in life (hence Alzheimers being primarily a disease of the aged). However, because people with Down syndrome have an additional copy of the 21st chromosome, and hence more of the bad protein, the damaging effects start... well... from birth. This is why the average age of Alzheimers onset in the Down syndrome population is between 25 and 30 years old.

I always believed that Down syndrome was a 'fixed' condition. By that, I mean that I believed our children are born with a fixed amount of cognitive challenges. Of course, we cannot know what these challenges are exactly, as they will differ from child to child - but through early intervention and loads of love and encouragement, our children will be able to achieve almost anything they set their minds to - albeit at a slower pace (and sometimes not even much slower at all).

I've always been soothed by the fact that we are doing everything we can for Malakai and that he's just so incredibly motivated and wants to learn. He is wonderful and beautiful and perfect. I wouldn't change him (or his extra chromosome) for anything.

But I find it distinctly disturbing and completely unnerving that there is this constant, daily, hourly overproduction of a protein that is killing his brain cells. I am devastated at the realisation that Down syndrome is not a fixed, but a progressive condition. How do I come to this conclusion? Well, this APP gene and it's protein is over-produced in my child. This protein, when overproduced is absolutely known to cause plaques on the brain that slowly rob an individual of their cognitive ability...

So what now?

Well - thankfully, the race to find a cure for Alzheimers is on. Unfortunately, this is not because our beautiful children with Down syndrome are almost guaranteed to develop it - no... rather it is because so many in the general population are in danger of developing this terrible condition, the treatment of which will rise into the hundreds of millions of dollars when the Baby-Boomers hit their 70's and 80's. This is something that that most governments cannot afford... hence the race...

But what now? What about Malakai? What can be done for him and other little ones with Down syndrome... now?!

I know of drug trials that are being done, by a Doctor called George Capone at the Kennedy Krieger Institute in the US, on people with Down syndrome - drugs that will hopefully counteract, or at least slow down, the development of further cognitive delays. So I hold my breath and pray and hope that these drugs are successful. In fact, one of the youngters doing the trial is from a blog that I follow - you can read more about Hannah's bravery here.

Malakai's First Day!

2011-01-14T10:25:00.000+02:00

Malakai started school on Tuesday... It was a wonderful day! I am so excited that he's going to be attending creche (half day for the moment) because I truly believe that there is only so much I can teach him... The rest he is going to learn from interacting with and emulating his peers.

So far he's been a bit reluctant to eat or drink anything at school - I don't know if it's because he's having so much fun that he doesn't want to stop, or if he's just unsure of things (and he's a fussy eater as it is..). But we'll see! I am sure he won't starve to death in a matter of days...

Otherwise, the teacher tells me that he's getting more involved with each passing day. On the first day, he kept pretty much to himself and just explored the buildings and the gardens. On the second day, he didn't partake in drawing-time, but played with toys close by. And on the third day, he participated with the other little kiddos during circle-music time, and he and another little girl played together nicely...

I am just sitting back and seeing how things go at this point. Oh yes, I have my fears that he won't fit in, or that he'll throw something at another child and hurt them, or that he'll want to hug and touch the other kids all the time (he's very affectionate) which will freak them out. Oh yes... I have my fears that Malakai will be 'obviously' different. But I am doing very well at keeping these thoughts in check.

I will not create stories about this that don't need to be told. I want the true stories, the true journey, the true magic to unfold naturally and without any colouring from me.

I know that Malakai will do well - I know that he'll thrive in a fun and busy environment. I know that he has social delays - but I am sure this a purely because he hasn't really been exposed to many other children in his life so far. And the only way he's going to learn will be through experience.

So, our first week at school has gone well!

Next stop... Happiness

2011-01-03T21:29:00.000+02:00

Wow! What a trip the last two weeks have been! We've spent so much time with our little boys, and as we've always noticed, they really do blossom when mommy and daddy are around!

But, I must say I am thrilled to finally be sticking my toe in the tepid waters of a new year... There is something about a clean canvas that really gets my creative juices flowing... everything is just so hopeful, so exciting, so possible when a new year opens it's door.

Malakai is starting school in a week's time and I am so excited for him! He could not be more bored and more frustrated within the confines of the home that has been his 'safe place to fall' from his birth. It is perfect though - he's been given everything he's needed here so far, but he's ready, so ready to spread his little wings and get out there into the big world.

I have so much to prepare for him. A signing book so that his teacher knows the signs that he uses and is learning. A letter that I'm writing for the parents of the children in his class. A special meeting, where we will discuss where he is developmentally and where we're working towards.

Oh, here we go! My little boy is leaving the safety and security of our home, where I have been able to guide every aspect of his development, to a place where I no longer have such influence... But I am excited about this, because I know that I do not know everything... and the world... the world is his too.

As for Harlan - he's just so adorable and determined. I think we have a little warrior on our hands. I know that his stubborn nature can make things difficult right now, but in future, it will fuel the fire of his self-realisation. So I am trying to find a way to introduce boundaries without making dull that fiery spirit of his. And this is not easy, but who said parenting would be easy?

As for Darryl and myself - we've got our own dreams this year as well... Dreams that we want to realise, as best we can. And somehow - even after 2010 pushed us and squeezed us and pulled us to our knees - we feel that we have a fighting chance.

So I will end off my first post of 2011 with a quote that I shared when I finally decided to resign from my job and take on writing full-time... When I 'took the leap' into a dark abyss and really prayed that my wings would grow... I think sums up beautifully our vision for the coming year...

"The very least you can do in your life is to figure out what you hope for. The most you can do is live inside that hope, running down its hallways, touching the walls on both sides." - Barbara Kingsolver

Holiday Pictures... so far

2010-12-27T20:59:00.000+02:00

We still have a good few days left of our Summer Holidays, and many more pictures to take... but I thought I'd load some in the meantime...

Christmas Morning with the boys

Malakai's first present

Harlan's first present

Malakai playing in his new 'tent house'

Harlan playing in Malakai's new 'tent house'!

Malakai just LOVES the piano at my sister's house - he'll sit there for hours just pounding on the keys... a little mozart maybe?

Pool time! The boys both love the water...

Malakai can jump into his dad's arms a million times over!

Harlan and me in the Jacuzzi - love the little stinker!

My dad giving Harlan his bottle

Natalia (my niece) running along the slip 'n slide - pure joy if I ever saw it!

Harlan's hair - ha ha! So cute!

Malakai on the slide - he's getting so big!

Hugs!

Malakai crawling through the tunnel

My beautiful boy - no really... how beautiful is this kid????

Like an olympic athlete crossing over the finish line - coz that's how he rolls!

Watermelon - Harlan's absolute favourite snack on these incredibly hot days!

Barefeet... grass... summer time!

He's just such a solid little guy, Mr Harlan!

Malakai and Darryl running and playing on the grass at Irene Dairy

Gotcha!

Goodbye 2010

2010-12-21T10:06:00.000+02:00

The end of the year is upon us and I find myself looking back, taking stock, trying to find the gifts that this year has bestowed upon us as the Stow Family.

While I have often felt completely overwhelmed, a lot like 2010 turned me over and gave my butt a big kick... I feel like I should... like I must delve deeper and find those gifts, because I cannot look back at a year as if it's a 'black sheep' in my life.

Firstly, we welcomed our second baby. Little Harlan brought with him many unexpected challenges, and in a way I was completely blind-sided by my 'trip to Italy'... But today, after months of challenges, we are faced with an incredibly happy, incredibly adorable, incredibly special little boy. He has crept into our hearts and we're celebrating his outspoken, lively, determined nature with each passing day.

Secondly, this year has been one where Malakai went from baby to toddler. We've faced all the typical challenges that a toddler brings to the table, and we've been amazed at how Malakai has started to come out of his shell and interact with his world. He too is an outspoken, lively and determined little spirit!

Thirdly, for the second half of this year I've attempted to live my dream by writing full time from home. This too did not turn out exactly as I expected... But I am holding on, determined to find a way to continue. I may need to rethink everything in order to hold on to my dream - and this is where it gets tricky... Nevertheless, I feel as though I've achieved something by reaching for and grabbing hold of my dream with both hands.

So - this has been a year that can be summed up in three succinct words: Challenge * Unexpected * Determination

So yes, I am a bit relieved to see the back end of 2010 approaching. My dreams for 2011 are not clear at this point, but I am hoping that it includes instead: Learning * Stability * Abundance

OK - so that's my little piece on 2010. There is so much else going on around here - especially with the boys, so I'll describe each one!

Malakai

I have been faced lately with how Malakai is different. I think this is in part due to Harlan - I never had a 'typical' yardstick until Harlan arrived and now, I see everyday, where their differences lie. At first that was painful for me, as if Malakai's diagnosis was 'hitting home' for the first time since his birth. I would often be stunned into silence when Harlan did something that Malakai did so much later or has never done at all...

At the same time though, I've been amazed at how well Malakai is doing. There are some areas that make it difficult to understand exactly how much Malakai actually knows (like his speech delay for example), but we're overcoming this.

Malakai is extremely physically strong and amazingly reached all his major gross motor milestones within 'typical' limits. He spends his days climbing over and under everything, wanting to experience new things with his body. He's also imitating things on a physical level - like the dancing on his favourite Barney DVD's. It's too friggen cute!

We've also discovered, by accident, that Malakai can read most of his signing flash cards. If we cover the image so that just the word is showing, Malakai correctly gives the sign for the word 8 out of 10 times. This has given me such a hope and we're going to be expanding his signing repertoire. I honestly thought speech was just around the corner - about 6 months ago already - but this just hasn't happened. So we need to find a way to help Malakai communicate - and he just loves signing and flash cards!

Another blessing is Malakai's love for books - he truly loves to read and gets so excited when I pull out his Love and Learning books... It's such a pleasure to see him WANT to learn.

Another thing that Malakai loves is to sing/sign along to his favourite songs. Because he's not really verbal right now, we try to choose songs that we can do the moves to, so that he can participate. If we don't know the signs, we just make moves up as we go along.

We've just seen such a change this year in Malakai - he's taking part, learning, showing us just how much he does understand, and giving us grey hairs with his antics! Next year he starts creche (again). This time we've found a wonderful place close to home that is my idea of the perfect place to spend my days if I were a toddler! And to boot, his teacher has experience with children with Down syndrome - so she's positive and excited about including him in her class next year!

I can't wait to look back at the end of 2011 and see how much more Malakai has grown and developed - no flourished - in his new school!

Harlan

Without ever verbalising it (or even really being conscious of it at all), I have a sneaking suspicion that I saw Harlan as my trip to Italy - all flashy, fast and fashionable... What happened couldn't have been further from what I expected...

A six-month bout of severe colic left me totally depleted - feeling completely useless as a mother and unable to cope in general. This wasn't what I signed up for... I kept thinking. Where was my 'perfect' baby? I've said it before and I'll say it again - emotionally, I coped better with Malakai's diagnosis than with Harlan's colic.

Harlan hated being held, he didn't respond to my attempts to soothe him and basically had a terrible experience of 'life' for his six months. And I felt helpless and totally incapable of making it better for him. On top of it, I was not able to give Malakai the attention he needed, because I was forever attempting to soothe Harlan (and failing miserably). So I felt an incredible guilt for letting Malakai down as well.

Then seven months rolled along, and eight, and nine... And Harlan has grown into this super happy, gorgeous little sprite. I love his spirit, I love his smile, I love HIM!

Harlan literally does new things every two days - he's hard to keep up with sometimes! And I've had to work through some emotions that tell me I cannot celebrate his rapid development because it will somehow be a slap in face to Malakai's achievements... I know it sounds ridiculous, and it is... So, I'm learning to celebrate Harlan for who he is, independent of Malakai.

To date, little Harlan is saying his first word ('ball'... go figure!), he's climbing all over the place, he's completely attached to me, he's standing and even taking a few steps here and there. I look at him and my heart swells. And for this... for this... I am so truly grateful, because for a long time I saw him and felt only pain and disillusionment.

So - here's to another year. A new beginning. A fresh start.

We say 'hello' to a plethora of possibilities in 2011 - it feels like Christmas (and it is!) with all this hope and yearning sitting full on my heart.

Bring it on!

Smile :)

2010-12-13T22:03:00.000+02:00

I have been meaning to upload photos for a while now - but with all the business around here, it's not been as quick or easy as I'd thought! So without further a-do... here are some pictures from the last few weeks!

Harlan LOVES to swing!

Where to next?

"Hello?" - Malakai's favourite thing!

Just the best smile!

Malakai catching leaves at the Botanical Gardens

Some bubble-fun!

Shake a leg!

Grrr!

That smile again!

Malakai's other favourite thing!

Bath Time Fun!

A rare moment of sharing...

"Hello" again!

Wassup?

Malakai was facinated by the putting green on holiday in Sabi Sabi

Malakai stealing the flags from the putting green!

My three boys

Harlan's always in on the action!

Taking a walk at Sabi Sabi - I love the Lowfeld!

Really? I mean... Really?

Happiness!

Malakai's version of the Soccer World Cup

Yummy?

Grrr - again!

Taking another walk at Sabi Sabi

Malakai's first roll down a grassy hill - yes... for real!

Summer Time Fun in the blow-up pool!

Fun in the sun!

Gimme Gimme - Malakai is facinated by the camera as well, and I just love his beautiful blue eyes!

Where's Molly?

2010-11-30T21:42:00.001+02:00

Warning! Long Post...

I think that one of things I am most grateful for on my journey so far with Malakai has to be that we live in the 21st Century. While I believe that there is still a long way to go... that people still don't really see the person behind the disability... at least an awareness is growing globally and we can say a very thankful farewell to forced institutionalisation and complete marginalisation (at least in the Western World).

So, yes... I am so thankful that we are walking this path today, and not 50 years ago... I was reminded of this fact when I was recently forwarded a link to a story called 'Where's Molly?' (visit http://www.wheresmolly.net/).

This is the true story of a man who went in search of his sister, who he'd last seen decades before, when they were both young children. Just before she turned three, his sister was sent away to an institution, and when he asked his parents over and over again "Where's Molly?", he was told over and over again to forget about Molly, she was gone forever. Eventually the six year old stopped asking and it was only approximately 30 years later that he was reminded of the sister he had so longed for.

At a school reunion, a former friend and girlfriend asked him how his parents were... and how Molly was... He had not even thought about Molly for decades, and almost fell over in shock. His friend (she would eventually become his wife) could not believe that he didn't know where Molly was. It took another 10 years, and the death of both of his parents, to prompt his and his wife's search for Molly.

It didn't take too long, and information that he found in his late father's wallet and a secret file that his father kept for Molly, helped him to track his long-lost sister down.

"Pain," is how he describes his first meeting with his sister, after decades of separation. He understood immediately how his sister was an individual, with a personality, with needs... his sister.

Molly couldn't tell him about her life thus far, she had become what he described as 'institutionally retarded' - just a being, surviving as best she could. So he dug a bit deeper, trying to get some answers.

From Molly's records, he discovered that his mother had visited once a few years after she'd been placed in the institution. She never visited again - the reason for which went with her to her grave.

His father, however, could not stay away. The records showed that he visited often, but was then told to stop coming because every time he left, Molly would become completely inconsolable.

At this point of the story I struggle not to equate Molly with my own toddler son and how it would be for Malakai if we left him somewhere he didn't know, and returned to visit, only to leave again... But if I was told - and believed - that an institution would be best for Malakai... then I would also not be able to stay away from him...

So Molly's dad found an ingenious way of still being able to be part of his daughter's life. He became a clown, and would visit the institution, and entertain his daughter and the other children. All without upsetting Molly.

Today, Molly and her brother see each other regularly, and he shares how he finds fulfilment in caring for his sister, in being there for her and giving her whatever he can. His younger brother, born only after Molly was sent away, has never been interested in meeting Molly...

This story has touched me so deeply, and I know the first assumption is that these parents are poor excuses... they should never have sent their daughter away! But then I imagine the time in which they lived - the 1950's...

It was a time of unquestionable obedience. If an 'expert' told you something, you believed them. There was no internet, there was no networking, there was no question. They knew best and what they said was to be followed, unless you were immeasurably brave (which I believe a handful of parents were).

But for the most part, parents listened. The thousands of children admitted into institutions 'for the feebleminded' across the world are living and breathing proof of this. Your doctor told you that there was no hope, that your child would only cause undue stress on your other children and pose a threat to the stability of your family unit (things that we know today are completely untrue)... If you're being told this by a doctor... well then... it must be true.

These everyday parents (the immeasurably brave apart) had to tear from their breasts their beautiful 'broken' children. They had to close their eyes, and with a proverbial 'shove', discard of their flesh and blood. In this way, they became 'the brave'... because it must be almost physically impossible to do such a thing without inflicting immense emotionally and physical trauma on yourself as a parent.

So many thousands of parents had to do this for their families... Oh, the twisted 'wisdom' of those days... The damage, the trauma, the loss that the 'enlightened' medical community caused for families like yours and like mine.

Thankfully we have come full circle (for the most part), and now our children can remain within the bosom of the family, while being supported by the majority of the medical community. Mothers and fathers, brothers and sisters no longer have to live without the gifts that our children bestow upon us. No 'immeasurable bravery' is required these days... only love.

And our children... our beautiful children... are where they are meant to be. At home, in love, surrounded by support and encouragement.

This beautiful enlightenment, however, does not apply to Eastern European countries. They have not yet come to a place of understanding and acceptance. Everyday babies are born with Down syndrome and are sent to state-run orphanages. At the age of 4-6, the un-adopted children are sent to state-run institutions from which they cannot be rescued. Given only the basics in terms of food and clothing, the vast majority of these little ones die, alone, from grief and in desperation...

Please - if you want to give a gift this Christmas - why not consider donating to Reece's Rainbow (the link is on the top left of my blog). This beautiful organisation specialises in international adoptions of children with mental and physical disabilities from Eastern European countries. They find the children, help raise the funds and essentially make it possible for families to be able to adopt these little ones that are in desperate need of finding their 'forever families'. International adoption is expensive (it can cost up to R500 000), so any donation towards this can make a difference for a child's life.

This story, that happened so many decades ago, that would be impossible to imagine in our world today is very real. It still happens, everyday, in Eastern Europe. They need our help. They need our voice. They need our reason and understanding. Think about it. Imagine if this little face was just a 'number' in an institution...

Baby Doe...

2010-11-22T20:31:00.000+02:00

Late last week two little babies, twins, were born in Arkansas USA to a woman who couldn't or didn't want them - luckily for them, they had adoptive parents waiting to take them home and raise them as their own.

The one twin was released and his adoptive parents took him home, the second twin was born with severe medical complications... and... an extra chromosome. He was left behind, not just to fend for himself, but with a clear 'Do Not Recussitate' order signed. They didn't want him, little Baby Doe. He wasn't even given a name.

Since then, the Down syndrome community worldwide has been up in arms, fighting, praying, writing letters, making phone calls, doing everything they could to give Baby Doe a chance. Thankfully, the DNR order has been lifted and Baby Doe is being given the medical attention he needs - and deserves. And, knowing the Down syndrome community, he will find a loving family who will take him home when he's able.

And that... is the crux of the matter. Baby Doe deserves a chance at life, a chance to give and receive love, a chance to be held by a mother, a chance to be thrown the air, giggling and smiling, by a father. He deserves to be given the chance to grow and learn and thrive and give and share and be the beautiful human being he was born to be.

I just cannot fathom that in this day and age a baby is left to die because he has Down syndrome... It is an idea saturated and dripping in ignorance... but mostly, it comes down to being a human being, seeing another human being who needs to be loved and celebrated and accepted. And yet... there is only rejection, fear and abandonment.

The universe gave this couple, these adoptive parents, an opportunity to broaden their lives to include a child who would take them down a road that will change their lives forever - for the better. An opportunity to see perfection, an opportunity to open their hearts and their minds, an opportunity to allow their 'perfect' child to grow up alongside a beautiful and equally perfect twin brother.

This was their journey, Baby Doe was their gift, but they walked away.

I can talk about how much this story hurts me, how when any child is rejected simply because of an extra chromosome, or because they have a brain that is damaged in some way, or because they don't 'fit' in to what we are told is 'perfect' - how this rejection is personal dammit. It is personal.

I can talk about how I was changed the day Malakai was born - I was changed forever and I will never, ever be able to go back. I will never be able to 'unlive' what I've lived with my beautiful son, over the past two years and more. How Malakai's very existence made me part of a community, part of an awareness, part of a global family.

I can talk about how I want to hold Baby Doe and tell him that he's loved, he's beautiful, he's special, he's smart and he's wanted... He's part of Malakai with whom he shares a common thread... He's part of me. He's my baby. He's every mother-of-a-child-with-special-need's baby, he's ours and we hold him in our hearts.

But I won't...

All's well that ends well

2010-11-12T08:46:00.001+02:00

Thank you to everyone for your well wishes! Malakai's operation went perfectly and other than it being VERY difficult to keep his dressings clean and dry, everything is good! He's running rampant as if nothing ever happened!

On another note, Harlan is now crawling all over the place! He's happier as well with his new-found independence! Full of smiles ans laughs.

This weekend we're going to attempt another little family getaway... Our last experience in March this year was simply aweful - Malakai got pneumonia, Harlan just cried all the time, we left a day early and when I got home my oldest and most precious dog died... Hopefully this time is much better!

We are going to Sabi Sabi just outside the Kruger National Park. Hopefully we'll get a chance to take Darryl's gran to do some game viewing. Darryl's grandad was an honorary game ranger when he was still alive, and I think Darryl's gran really misses the Kruger. It will be nice if we can do this for her!

Otherewise, I am hoping we take lots of long walks and that Malakai loves the freedom of the big open spaces as much as I think he will.

say a little prayer...

2010-11-09T16:03:00.000+02:00

... for my little man Malakai...

We go into tomorrow at 6am and our surgery is scheduled for 7:30am. It is an hour-long procedure (wow... that makes me so nervous) and they're going in there to fetch his little testicle from it's hiding place and bring it down to where it belongs.

I really hope it goes well and that my little boy recovers well!

Any moms out there had any experience with this kind of surgery? Does it hurt afterwards? You know... being 'down there' and all? I really hope it doesn't...

Having said this, I am really grateful that this has been Malakai's only 'issue', knowing full and well how many of the little ones in the Down syndrome community out there have had to endure heart surgeries and the likes.

We'll keep everyone updated!

hello little blog...

2010-11-02T21:43:00.000+02:00

... I promise I've missed you too...

Life is a bit crazy at the moment - so much to do, so little time! So here's a quick update of life in the Stow household!

My little Malakai is still a superstar! This week we've noticed for the first time that Malakai is signing more on his own. Up to now, he would sign when we prompted him, but rarely of his own accord. For example, yesterday he picked up Harlan's water bottle and signed 'water', he then picked up a stuffed dog and signed 'dog' and said 'woof'! He's also signing 'thank you' and 'please' when he wants juice (we're trying to extend this to all requests, but so far so good!).

Next week we're taking Malakai for his first operation... I am so not excited about this! He has an undescended testicle, and so they're going in there to fetch it! Apparently it is just a day procedure, so he'll be home the same day. Please say a little prayer for his quick recovery for next Wednesday!

As for Mr Harlan - our man is mobile! We are officially crawling this week! He is so determined, and just uses every move he's able to do to get himself around - but we've seen real and definite crawling! I think I've said it before, but I'll say it again - I just don't know how I'm going to cope with two mobile boys!

Also, I decided to stop breastfeeding Harlan at 9 months - I was sad at first, because it was such a special time that we shared, but I must say that it's gone well and I'm kinda relieved to have my boobs back to myself! LOL!

Then, we're so proud to announce the arrival of our vegetable babies! The weather has been in our favour, and after a few good rains the past week or so, we're seeing little sprouts (beans, baby marrow, and butternut), while our seedlings are flourishing (except for our green peppers... who seem a little unhappy at the moment).

Finally, Darryl won a trip to a 5-Star Lodge in Maputo Mozambique (just north of South Africa) today. The getaway includes flights, transfers, meals, accommodation... everything... And it is something we could never ordinarily afford to do, and it falls right on our 8th wedding anniversary... romantic no? After much deliberation, we've decided to fly Darryl's mom up from Durban to help Sheri (Darryl's sister) to babysit for the weekend.

Here is the rub... It is our first trip away from the boys, our first trip as a couple since our time in Scotland (5 years ago). I am so scared! I have not spent a night away from any of my boys (other than the time Darryl took Malakai to Durban for the weekend)... I just can't imagine actually being away from my boys. Any advice or stories from your first trip away from your kids? How did you cope? How did you feel as though you prepared the 'babysitters' enough for what lay ahead? I'd love some feedback!

Ok, all you beautiful precious people in bloggy-land! Until next time - Love and Light.

Time outs and other arbitrary happenings

2010-10-21T10:55:00.000+02:00

Sorry! You'd think as a writer I could think of a better title, no? Well, my brain is still sleeping this morning as I realise that I haven't updated the blog in over 10 days!

It's not that things have been boring, it's just that there is so much happening that I don't know what to pick to write about - so this post is going to a snippet of a few things!

Time Outs...
We have officially started (and are following through) on Time Outs for Mister Malakai. His antics (hitting his brother on the head repeatedly, throwing things at the TV etc) got to a point where I realised that we had to decide on something and stick to it!
So far, Time Outs have worked wonders! It took Malakai a few tries to figure out what this new thing was all about, and now he's got the hang of it. He doesn't like it - but seems to tolerate it quite well. AND it has curbed his antics really well. He still takes his chances, but we've seen a huge improvement and Harlan isn't getting his poor little head abused!

Freedom
Malakai is probably most happy when he's helping out around the house - packing away toys, unpacking groceries, helping to pack dishes away... He, like every other toddler, wants to feel as though his efforts are worthwhile. So, whenever I can, I try to include him and give him a 'little job' to perform, which he just loves!
Yesterday, we went to buy bread and milk. I would usually put him in the trolley and push him around, but yesterday I told him nicely that I was going to let him walk only if he stayed by my side. I gave him the bread to carry and he walked through the entire shop, by my side, carrying the bread with the conviction of a Very Important Job.
I just smile when I think of how big he's getting. :)

Teething
Both Malakai and Harlan are still teething... can't believe it! How long do these little suckers take to make an appearance? Nevertheless, both boys are drooling up a storm and quite grumpy - shame! Malakai is getting his incisors and Harlan is getting teeth numbers 5 and 6 - can't believe he's already got four teeth!

Harlan
He's still a super sensitive little guy, but beyond that he's really still very smiley and happy. He's rolling all over the place now and is learning to pull himself into sitting position from his side. He loves standing and give him half a chance and he won't let you put him down. Crawling is not too far off either, I think we'll have a mobile-baby within the next month or so. I am just wondering how I am going to deal with two mobile children... But I will cross that bridge when I get to it I suppose!

Finding a School for Malakai
Last winter we took Malakai out of school - he was there for only about 3 months, but he just got so terribly sick all the time. If it wasn't tummy bugs it was pneumonia or a runny nose - it was never ending. In those three months, Malakai lost about 2kgs and really looked so thin - gaunt actually.
So, I totally believe we did the right thing by bringing him back home. He got healthy, gained his weight back and even went through a developmental growth spurt in many areas.
But now, 6 months later, I am seeing signs that Malakai is ready to go back to school - at least for mornings. He seems really frustrated and bored with what's on offer at home and I can tell he would get so much out of a fun and loving environment where he can socialise and do new things every day.
So I've been looking... and looking... and looking... Hopefully I find the right place soon!

Our edible garden
I've finally started my own edible garden - yay! I am so excited! I must admit I was inspired by Barbara Kingsolver's book Animal Vegetable Miracle, which I read almost 4 years ago already! Since then I've dreamed of growing my own food - or rather attempting to grow my own food.
So, we've got three different kinds of tomatoes, lettuce, spinage, green peppers, artichokes, asparagus, onions, spring onions, butternut, beans, carrots, strawberries and a variety of herbs.
I stand every night and water my little 'crop' of vegetables and just feel... well... right. Aaaahhhh.

Working from home
Since leaving my job in June, I've been blessed enough to work from home. I am excited about what I'm doing and looking into the future... I must say I am not a patient person, so sometimes I get a little frustrated that things are not happening fast enough - but then I just remember that there is so much I want to do and I can't do everything at once.

Things are knitting together, like a wonderful colourful tapestry blanket. I have simplified my life, I am working from home, I am more available to my children during the day and can watch them grow, I can tend to my new edible garden and hopefully use this to feed my family - from the earth to my family's dinner plates! Things do not always run smoothly, and I hyperventilate sometimes when Uncertainty comes a-knocking... but for the most part, when looking at the Bigger Picture, I am happy. Yes. Happy.

This 'n That...

2010-10-07T10:37:00.000+02:00

Well, we are officially in summer! Yay! We hardly had a spring-time at all and seem to have just been thrown in the deep end - long bright sunny hot days, followed by cool nights... It's been lovely! No more dressing the boys in layers upon layers of clothes - just a t-shirt and shorts... yay!

Malakai loves being able to run around barefoot - keeping shoes on him this past winter was a challenge I tell you! The boys just love spending most of the day outside, in their garden, playing in the sandpit, the water table and the jungle-gym! If only we could get some rain now... It's been six months since our last rain - my garden is dead and the air (although beautifully warm) is carrying so much dust!

As for Malakai - he continues to go through a spurt in communication and fine motor development. He is saying more words more consistently now and even attempting two word phrases like 'more please'! I am so proud of my little monkey.

On the flip-side, Malakai is also determined to hit Harlan on the head with anything he can find and when he can't get near him, then he throws things at his head - and he's got a really good aim! We are trying various approaches to this problem, and so far nothing is working...

As for Harlan - he's becoming more mobile and adventurous with his body. He's a happy smiley boy, really! He adores Malakai, even if he's a bit nervous of him at times because he knows he gets hit on the head sometimes... oh no...

Both boys are teething up a storm! Malakai is getting his incisors and Harlan is getting teeth (just don't know which yet) because he's drooling up a storm and refusing solid food. Mama's not getting much sleep with these goings-on!

I thought I would leave everyone with a few pictures - long overdue!

Big Blue Eyes!

I love this one of Harlan!

Hooligan Malakai - In the car driving through the Lion Park

Malakai just loves water and playing in his water table

Both boys enjoying their jungle gym

Happy boy!

Smiling despite his snotty blocked nose!

Just loved this one - Harlan's big blue eyes!

Malakai talking to Harlan - I love it when he's gentle

Another big smile!

Getting teeth?

Playing in the washing basket

Cruising at the zoo

Learning to catch the ball - big boy!

Simply Sense-sational!

2010-09-28T12:05:00.000+02:00

So... we've been going to Sensory Integration Therapy for 6 weeks now and I must admit having thoughts in the first few weeks along the lines of "why am I actually paying for this stuff? this woman just swings my kid around, makes him slide down ramps and sit in buckets full of beans. I can do that for free..."

But we have seen such a spurt in development with Malakai - from better balance, to greater fine motor skills, to actually saying words (real words...)! Our SI therapist said he would improve in all areas over time - and he has. And I can't believe its simply because of 'feeding' him the sensory input he needs.

In our last bi-weekly speech therapy appointment, Malakai was able to work a toy that involves pushing down a lever to get a ball released - something that we had played with previously, but without success. I mean, we demonstrated how the toy worked over 30 times and Malakai just really struggled to figure out how to push the lever down - he pulled it, pushed it sideways, hit it and the like, but couldn't seem to make his hand push it down. In our last session? First try! He got it right first time and then repeated the movement over and over again. His speech therapist is so impressed with his development and ability to follow instruction - she's amazed that she's now able to work so much more constructively with him.

It makes sense though, if you think about it. We understand our world through our senses - if the information is not coming through strongly enough, or if it's all jumbled, then our ability to process the information (and learn from it) is limited. When we start to 'integrate' our sensory world, then we can understand and respond easier.

I really wanted to share this news because there must be other little kiddos out there that could benefit from Sensory Integration. It helps to see a trained therapist, but if you can't find one (or can't find the time...) - here are some tips on how to 'feed' your little one a sensory diet that will help them to integrate their sensory system better - if it worked for Malakai it can work for you too!

"Young children need to absorb sensory knowledge through their skin, muscles and joints before they 'graduate' to a developmental level where they can gather information through their eyes and ears."

The following are ideas for Proprioceptive sensory input throughout your daily life:

While in the car:

Playing with and pulling prestik
Popping bubble wrap
Uncurling paper clips
Lacing rubber bands together

In the bathroom:

Cream containers that you have to push down and squirt out
Pouring water from big containers
Stirring bath water clockwise and then anti-clockwise with eyes shut (one hand goes back, one forward)
After bath - give a good firm toweling rub down, wrap child tightly in the towel, and later cream body as if giving a massage. In summer this can be done after a swim in the pool.

In the kitchen:

Pouring water from a 2 litre container into mugs
Peeling oranges
Mashing potatoes

Whilst doing homework

Sitting on a cushion or something 'wobbly'
Squashing a squishy ball from time to time
Use proprioceptive snacks to maintain focus and concentration

Proprioceptive Snacks

Put these in a lunchbox to help modulate the child during the school day or during a long car journey
Rice cakes, biltong (beef jerky), dried fruit (mango is best as it provides the most resistance), wine gums, crunchy fruits like apples, pickles, yogisips with a long straw, popcorn, carrots, liquorice strips, dried fruit rolls, cheese squeezies, pretzels, raisins.
Peeling oranges, or make a hole in the top and squeeze and squash the juice out
Freeze juice bottles in summer so child has to squeeze and suck the ice as it melts.

Proprioceptive activities for the mouth:

Allow child to chew gum (if old enough), eat chewy or crunchy foods
Sip water from a water bottle with a straw
Drink thick liquids through a straw - the thickness of the straw and the liquid can be varied to change the degree of heavy work required
Play mouth soccer with straws and cotton balls
Blow bubbles in a dish of soapy water with a straw (adult supervision required)
Blow whistles, blow up pool toys, balloons
Eating grapes or cherries with pips - finding the pip with your tongue
Copying funny faces and mouth shapes

Outside in the Garden:

Roller skate / roller blade uphill
Garden work such as: mow the lawn, rake the leaves, push the wheelbarrow, shovel sand, pulling out weeds
Pull a friend or heavy item in a wagon
Climbing ladders, ramps, trees, anything
Push a friend in a wheelbarrow
Walk around outside in the dark, looking at the stars
Pull a wagon or sled uphill - walking backwards is best
Piggy backs - let the child hold on himself and do all the work
Tyre tube for walking or sitting on
Wear a backpack around the house or garden - go on a treasure hunt collecting heavy bean bags (or bags of rice) to fill the backpack
Tug-of-war - do this in sitting, standing and kneeling position
Hanging from monkey bars
Tumbling with friends
Leap frog
Wheelbarrow walking - hold your child's legs and see how far they can go on their hands
Pouring - put different amounts of sand, beans or water into a cup or pitcher. Let the child pour from one container to another

In the Living Area:

Bulldozer - two children sit in a large cardboard box and two others push the load across the floor, using their shoulders, backs, hands or feet to make it move
Carry heavy items - baskets of blocks, groceries for mom
Push or pull boxes with toys or a few books in it - more resistance is provided if boxes are pushed/pulled across a carpeted floor
Fill a pillowcase with a few stuffed animals in it for weight - child can pull it up an incline or stairs
Use the cushions from the sofa for climbing, jumping and crashing into them
Perform household chores such as vacuuming, sweeping, carrying the laundry basket, wiping the table, washing the windows, scrubbing surfaces
Have pillow fights
Make a sandwich out of your child - between couch cushions
Have a child close his eyes and 'feel' where his legs, hands, arms etc are positioned.
Massage child's hands before he tries a difficult motor task

The following are ideas for Vestibular sensory input throughout your daily life:

Outside in the Garden:

Rolling down a grassy hill
Airplanes - parent lies on back and places feet on child's tummy. Child is lifted up by parent's feet and is suspended above.
Piggy backs
Park activities - swings, slides, merry-go-rounds, climbing
Swinging in a blanket
Jumping on a trampoline
Jumping to rhythms - recite a nursery rhyme, clap your hands or beat a drum in a steady rhythmic pattern.
Riding vehicles - trikes, bikes, scooters
Walking on unstable surfaces - in a sandpit, suspended bridge, water bed, rocks

In the living area:

Jumping from the bed into a parent's arms
Jumping off a chair onto a crash pad
Moving through obstacle courses - tunnels, ramps, balance beams, steps, sofa cushions

The following are ideas for Tactile sensory input throughout your daily life:

In the Bathroom:

Play in bubble bath
Swaddling - roll the child tightly in a towel which provides deep pressure
Rub-a-dub-dub - encourage child to rub a variety of textures on his skin (oatmeal soap, shaving cream, lotion soap, loofah sponges, thick wash cloths, foam pot-scrubbers, brushes)

In the kitchen:

Play with finger paint or use instant pudding as a finger paint
Goop - mix maizena (corn flour) with a little water to make a past
Cooking - mix dough with hands
Draw in flour in a baking tray

Outside in the garden:

Roll in the grass
Get buried in sand
Sand tray - fill a large box with sand, beans, rice, cornmeal or popcorn. Add a small toy such as a car
Make a collage of various outside objects - eg leaves, stones, pine needles, dirt, sticks, acorns, pods
Make a collage with corn, lentils, noodles, pasta, rice, tin foil, sand, cotton wool, finger paint etc

In the living area:

Crawl through tight spaces
Secret hideaways - supply towels, blankets, sheets, sleeping bags, down comforters, pillows etc for your child to construct a fort or hideaway under a table
Drawing on skin - draw a design on the child's back.
Feely box - cut a hole in the top of shoe box box. Place different objects in the box such as spools, marbles, plastic animals etc into a box. The child feels through the hole and guesses what toy she is holding.
Craft stores and fabric stores - feathers, cotton balls, silk, raylon, netting, wool, lace etc.
Make puppets or rag doll out of different textures
Buttons in a bag - order the size without looking
Clay and play dough
Walking barefoot on bubble wrap.

This information was compiled by:
Sally Mackenzie: Hons O.T. (UCT); Hons Psych (UNISA); SI (SAISI); Dip TherMassage
Kate Bailey: Hons O.T. (UCT); Masters O.T. (WITS); SI (SAISI); NDT

A bit lost without my therapists...

2010-09-15T10:40:00.000+02:00

I know how strange this is going to sound - but it's true... I am a bit lost when it comes to Harlan's development because he doesn't have any therapists...

With Malakai I made the conscious decision to never 'measure him up' against typically developing milestone charts. I knew that he would do things in his own time, when he was ready. I wanted to enjoy his development with wonderment and awe, without knowing if, or how, late he was.

So - I just relied on Malakai's various therapists to guide me in recognising his emerging skills, and through their guidance, I was able to work with him on these skills by devising games to play that would help him exercise emerging skills. I never looked too far ahead and I never 'ticked' anything off on a chart.

So - here I am today with Harlan and I have very little idea of what he's supposed to be doing at what stage? Not that milestones freak me out with him either - its just that I actually have no concept how and when certain things start to develop.

So here I am, a mother for the second time, reading baby books on development! It's quite funny really... and sometimes even scary. Harlan is developing at a completely different pace to Malakai, which I expected. What I didn't expect was that I would be so clueless after two years of assisting Malakai to develop all his skills. I thought I'd have it waxed. But obviously not.

I read these books and go 'whaaaat? he's supposed to be doing that already? Really?'

I can't describe accurately the feeling I have to give Harlan everything he needs, just as I did for Malakai, but without the help of experts or professionals... Almost as if I'm cheating my second child out of being his best...

Strange...?

A Sensory Diet

2010-09-12T21:48:00.000+02:00

Like most two-year-olds, Malakai craves new experiences and also demands independence - he'll take it anyway he can get it. He's throwing tantrums like no one's business! I find it difficult to cope sometimes, because I look at him and think "where is my little boy? the happy one? the one that I was able to satisfy, just a couple of weeks ago...???"

But such is life, no?

I know that Malakai is frustrated, and for obvious reasons - we don't understand him sometimes, even with the sign language. And even if we did understand him, it just isn't acceptable to swing from the light fittings, or drink the dog's water, or smash your brother's head with a plastic golf-club... So, um, no buddy...

Mealtimes have become epic battles - Malakai is so adamant that he will only eat chips and a protein (chicken, sausage, fish etc) and NOTHING else... OK - so the chips and protein are grilled (and not fried)... but still - vegetables are now an endangered-species he is going to end up becoming a chip! I just have to remind myself that he eats well during the day (fibre, oats, fruit, yogurt etc)... But how long can we do the chip thing? I suppose I'll have to wait and find out...

I'm also convinced that a large portion of his frustration comes from the fact that he's seeking sensory input - so his Sensory Integration Therapist and I are working on a Sensory Diet for him. It's not as fancy as it sounds though... the basic idea is to give him tons and loads and friggen huge amounts of sensory input - as much as he wants...

So, we have now equipped our home with all kinds of sensory experiences that Malakai can dabble in at his own will. In December last year already, we created a sensory garden for Malakai with a sandpit, jungle gym, ball pit, and water table (which he loves). We also went shopping today and he now has a swing (...yes...he didn't have a swing at home until now...) and a kiddie-trampoline. All these things give him various sensory input - tactile as well as proprioceptive and vestibular (the two lesser known, but very important, senses).

So - little Malakai has a figurative smorgasbord of sensory stuff to keep his cravings at bay!

I really hope that at least giving him a plethora of sensory experiences will feed his curiosity a bit (or at least make him so tired that a tantrum is impossible... I can dream can't I?)

As for the other stuff - I don't think I'm alone... They're not called the 'terrible-twos' for nothing!

Sticks 'n Stones...

2010-09-06T13:47:00.001+02:00

We all know the saying about 'sticks 'n stones can break my bones, but words will never hurt me?' I don't know who came up with that, but they were obviously on the receiving end of some harsh words.

OK - so I've written and rewritten this post a hundred times! I just cannot find the words to adequately describe how I'm feeling... I really hope this comes out coherently!

I understand that we live in a world where 91% of people with a prenatal diagnosis of Down syndrome will abort. And because of this, I can assume that the majority of people out there consider my son, and others like him, to be a 'mistake'.

And this is where it starts - at a place where human beings are ultimately sure that a child born with Ds is a mistake.

So - how do you treat someone you consider to be a mistake? Do you ridicule them? Do you call them names? Do you consider them worthy? Do you see them as a peer or someone to be 'put up with'? Do you get to know them? Do you even see them, or is ignoring them better? Remember - this person is a 'mistake', they weren't supposed to be in the first place.

And yet - here I am (and countless parents and siblings and aunts and uncles and grandparents)... absolutely and completely in love with my son. Yes, he has Down syndrome, but he's also funny, clever, loving and adventurous.

My son is capable of everything and anything he sets his mind to - and believe me he's determined!

But how does the world view him? How will they treat him one day when he's out there without me by his side? Will they call him names? Will they respect him? Will they 'put up' with him? Will they see him... I mean really see him?

More importantly - will I be able to protect him? Will I be able to explain to him that certain people don't know any better? Will I embark on a mission to eradicate those that are disrespectful?

I just don't know right now. And that is bugging me - a lot. I don't know how to protect him, how to change to the world, how to foster understanding in a world where ignorance is rife.

Sticks 'n stones...

"V" is for Vote...

2010-09-02T09:03:00.001+02:00

So here we are again... I have asked you all to nominate me for the SA Blog Awards and thanks to your kindness and generosity, my little blog has made it to the top 10 in my category (parenting) and the voting phase now begins!

So! I ask once again - if you feel that this blog makes a difference, adds a little to the world, or is just plain interesting - please click on the vote button on the top left column of my blog.

Keep these notes in mind:

1. You need to respond to the confirmation email that they send you - otherwise the vote doesn't count.
2. You can vote using the same email address every 24 hours - so you can vote for me more than once as long as you let 24 hours pass.

So go on - vote for me if you are moved to do so! I appreciate your time and effort!

Oh Yes - The voting phase lasts until Midnight on the 17th of September.

Thank you everyone!

In my mind's eye...

2010-08-31T11:27:00.000+02:00

I would say that I am definitely someone who finds it more comfortable living in my head. And I often find I miss out on life (and living every moment) because I'm somewhere inside my head, either in the past or the future. This is something I'm working on changing, if for no other reason than the fact that children live in the moment and I'd so love to be in on the same wave-length as my children - how else will I come to enjoy them and relish in their lives?

Having said this - I've always been good at imagining my life, creating an image in my mind of how I wish it could be, what I would do given the chance... Now, this could be good and it could be bad.

What's great about dreaming and creating a picture in my head is that I have a bit of road-map... directions if you will... to the place where I want to go. These days my dreams are about simplifying, creating natural spaces, treading gently on the earth. I'm dreaming about my summer vegetable patch, about a new recycling bin, about writing more. I'm dreaming about playing in the garden with Malakai and watching Harlan learn to crawl over newly-moved green lawn. I'm dreaming about cooking meals (using my own vegetables and greens) to satisfy my family's hunger and watching movies after the boys have gone to bed, cuddled on the couch with my husband.

But I've also learned that dreaming is not always practical - it often takes up the valuable time I could have spent living! And I've learned that sometimes our dreams cannot begin to encompass what is actually in store for us. If I remember back to my pregnancy with Malakai - I very clearly had no 'dreams'. For some or other reason, for once in my life, I didn't project ideas of how being a new mother would be. Even though I'd try to imagine what my son would be like - I kept drawing a blank.

Now I know that it was because Malakai would come into our lives revealing a secret that no one knew or expected. I now know that I would never - could never - have dreamed a more beautiful dream. Malakai, and his diagnosis of Down syndrome, is the greatest gift I never knew I wanted.

Two years later, I am still sometimes dumbfounded by the path my life has taken. I cannot believe that I have been blessed so fully and so abundantly. I could not have dreamed a better dream in my mind's eye...

So, my son has taught me to live in the moment - a lesson I try to apply to my life everyday. A lesson that I find most challenging because I am so comfortable in my head... I know that nothing I dream of can compare with what I have, right here, in front of me.

One amazing husband. Two perfect boys. And an extra chromosome.

Me and the boys

2010-08-27T08:00:00.001+02:00

A good friend of mine, Lisa Reid, is building her photography portfolio. So off we went last Friday to have our own 'mini-shoot' - just me and my boys.

Malakai and Harlan were really great - it can be difficult for little ones to be placed, entertained to 'smiling point', and have a camera in their faces for an hour... I know from my years of doing this to other families! LOL!

For me it was like a gym workout - looking good amidst the chaos of two little ones is hard work! I kid you not! And as I am usually on the other side of the lens, I was a bit uncomfortable posing for the shots, but I am soooo grateful to have some great pictures with my boys!

So other than the 'workout' and an angry black swan who tried to attack us (really... it was wierd!), it was fantastic fun!

I think Lisa did an excellent job!

Splish Splash & A Stretchy Day

2010-08-26T08:00:00.001+02:00

I am so loving spending time with Harlan these days! I'll be honest... those first six months were a difficult time. I may not be like other moms out there... I did not cope well with Harlan's colic at all...

In fact, I think I came to terms with Malakai's diagnosis of Down syndrome easier than I came to terms with the fact that Harlan screamed for almost every waking second for the first six months of his life. At least I could cuddle and snuggle and kiss Malakai. I felt like a mommy from the word go. With Harlan however... I felt like a complete failure in the 'cuddle-department' and those times that he was inconsolable? Well... my 'mommy-spirit' would just break.

BUT - that's all the in the past now! He is a smily, engaging, content little thing these days - just eating up all the attention he gets. Amazing! I've even managed to take some 'splish splash' bath pics (not possible until now due to severe screaming through the entire bath experience).

And then - my little stinker (Malakai)! I have written before how Malakai has sensory-seeking behaviours and I've described them to his Sensory Integration Therapist, Nadine. Well, as other moms will know - our little ones rarely (if ever) play along with us. If we say they can walk... well then they 'loose' the ability for the entire therapy session. If we say they are talking... well then they only babble through therapy. And the therapist ends up looking at us like we're slightly delusional.

Well! I am so happy to say that Malakai had a Stretchy Day at his last SI therapy session! He sometimes has these days when he continually sits on his bum and stretches his legs out in front of him (sometimes he'll even pull faces and make uncomfortable sounds). He does this every two minutes - seriously. I told Nadine this and I think she kind of brushed it off... Until our last session. She was amazed to see how much Malakai was stretching and even suggested I send him for an EEG to rule out seizures... WHAT???

Anyway - she did joint compressions on his knees and ankles - kind of like massage for your joints (instead of your muscles) and for the rest of the day he was fine. This is great news because now I know what to do with Malakai on the next Stretchy Day.

As for why Malakai needs the extra input in his legs? Well, I'm guessing it has to do with the fact that we're only going to physio therapy once a month now (instead of once a week) because Malakai is doing so well with his gross motor skills. But that means he's not doing all the physical stuff that he used to once a week. So, I'm going to investigate maybe doing a kind of baby/toddler gymnastics or tumbling class with Malakai, just to give him the extra input in his legs (climbing, jumping etc) and maybe we'll solve the mystery of the Stretchy Days!

Read it... and weep

2010-08-25T09:19:00.000+02:00

.... in a good way!

This is so worth a read, so grab a cup of coffee and take 10 minutes - you won't regret it!

Expect. Don't Accept

(link stolen from Stephanie from Our Daily Smiles... who stole it from Rene at My Special K's... who stole it from Michelle at Big Blueberry Eyes... don't you love the sharing power of the blog-world?)

South African Blog Awards - Nominations

2010-08-24T09:50:00.000+02:00

I have been nominated this year again for SA Blog of Year (Best Parenting Blog Category) - last year I came third.

Currently we are in the 'nomination' phase and the top 10 nominated blogs in each category will go through to the 'voting' phase.

Please, if you feel this blog is at all an inspiring/interesting/nice place to visit... please nominate me by clicking on the 'nomination button' on the top left hand side of my blog. Please follow all the prompts and respond to the email that they will send you to confirm your nomination.

Thanks for nominating me!

PS - someone asked if the current order has anything to do with number of nominations and I must say I don't know really? I think it may just be random placing at this point (or the order in which nominations came through).

Words, Sleepless Nights & Licking the Dog

2010-08-18T16:06:00.000+02:00

Yes... you read right!

So much has been happening around the Stow Household and I've had so little time... something I've realised - with two little boys - is not about to change anytime soon...

So - I've neglected to post about Malakai's first words, which have been making their appearance here and there of late. I suppose they're not like first steps or the first time he clapped (definite and difficult to miss) - his first words are more like cotton candy... they're wispy and fine, they disappear quickly, but they are oh so sweet...

He's been talking for a while now - in his own language! But recently I've picked out words that he's using often and with intent, like baba, dada, mama, bird (for everything he sees), bahni/barney (he's an addict I tell you!) and his two favourites - more and no...

Other than his words, his signing has really blossomed too and he loves to go through his pack of signing cards, diligently looking at each picture and signing each one. My favourites are the ones that he's decided need a sound effect too - like elephant (with a nasal sound), pig (with a piggy sound of course!) and bear (with a growl). I just want to eat him up when he does these signs!!

Malakai also loves to be sung to - especially with actions and he'll try to imitate all the hand moves and he even anticipates the end of the song and gives the singer a round of applause...

As for sleepless nights - little Mr Harlan has his first tooth and is getting more so there go the nights... right out the window! I've been spoilt with Harlan because he's always been a good sleeper at night - so now I'm trying to make it through the day with sometimes only 3,5 hours sleep... sheesh!!

As for licking the dog... the culprit? Malakai of course!

We've just starting Sensory Integration Therapy because Malakai has a lot of behaviours that suggest he's seeking sensory input. He's still putting everything in his mouth (including parts of the dog!), he's throwing everything, banging everything, grinding his teeth and sometimes he'll sit on the floor, flexing his legs in front of him (really stretching them) for ages and ages - like he needs the sensation of knowing where his legs are. From what I understand, being a sensory-seeker means that he's not experiencing his world as fully as he should - almost like trying to read braille with gloves on (its possible... but not really ideal). So SI Therapy should help to integrate his senses properly, and so improve his experience of his world. I'm hoping it helps, because I would hate to experience the world as though I'm wearing a huge glove over my body.

And that (as they say) is it... for now!

Malakai's 2nd Birthday Party

2010-08-16T15:26:00.001+02:00

Malakai's 2nd birthday party went off without a hitch - the theme? "On the Farm" because Malakai just loves singing (and signing) along to 'old MacDonald'. I really had a lot of fun with the theme and even sewed the table cloths (made from red gingham and blue denim). Last year I was working three jobs, so I had very little time to plan his first birthday party - so this year I had so much more time and put in so much more effort.

We are so thankful for everyone who came along to celebrate with us - Malakai is our beautiful boy and the day of his birth will forever signify the day our Life-Paths changed forever (in the very best way!).

If you missed it, here is my letter to Malakai for his special day.

Tomorrow

2010-08-07T20:55:00.004+02:00

Two years ago... I cannot believe it has been that long... or this short...

It feels as though you've been part of my life forever - and perhaps you have.

For two years I've been blessed by your smiles, your laughs, your love. For two years you've stolen my heart, my love, my everything. For two years we've grown together, and you've become part of everything in my life - my decisions, my thoughts, my prayers, my hopes.

For two years we've travelled 'the road less trodden', side by side - and you've shown me that life is perfect, we are blessed, and that every moment counts.

You are my beauty, like a sunrise. You are my heart beat, my breath, my food, my water.

I love you Malakai - more than I ever thought I could love another person.

Happy birthday little big man. Mommy is very very proud of you and I love you with all my heart.

Pass me the butternut...?

2010-08-05T11:23:00.002+02:00

We started Harlan on solids with cereal for the last 4 weeks and he LOVES it to bits. This last Monday I introduced butternut at his evening feed and this was his response... I doubt he would describe butternut as 'delightful' at this stage.

Shame!!

Plettenberg Bay

2010-08-03T09:13:00.003+02:00

So... my dear little blog, you may be wondering where I've been for a whole month? Well, I can't explain the first two weeks of July (other than the fact that I just didn't get around to updating). But I have a perfectly good explanation for the second two weeks - Holiday!!

We went down to Plettenberg Bay in the Cape for two weeks and thoroughly enjoyed ourselves - the sand, the sea, the kids, loads of interesting places to visit - we had a really great time.

Here are some pics (I feel quite bad that they are almost solely of Malakai and not Harlan - but I suppose Malakai is doing things that I just have to capture on camera!)

Mommy & Malakai

All my children and the things we did

Malakai on the beach

Malakai and aunty Sheri

Malakai and Dada on the beach

More of Malakai!

This weekend heralds Malakai's second birthday - I cannot believe my little man is almost-very-nearly two years old. I will be sure to update with pictures of the party (theme: oink! moo! baa!).

This 'n that...

2010-06-30T15:21:00.005+02:00

I've been meaning to post for a while now and I've got quite a bit to say... so sorry in advance for any rambling or on-goings that may become a bit tedious to wade through!

Working from home

Well, I must say I am very busy! Whew! How did I write articles AND work full day AND do photography AND be a mom and wife? I just don't know! Writing articles and doing bits and pieces here and there really keeps my days full, and it isn't as if I have coffee with friends and mess around at all - there really is so much to do.

Most of all, it's great to be around and be able to stop for a moment to play with Malakai or hold Harlan during the day. I feel so connected to the boys, and I feel that I'm taking better care of my husband and marriage too.

Harlan's Crying

After five-and-a-half months of serious crying we've finally turned a corner. Harlan's crying has become so much better and we're getting to know the little boy behind the screams. Whew! It was tough for a while there and we're so happy that he's finding new ways to express himself!

He also adores Malakai - if there is anything that can make him smile and giggle, it's when he's watching Malakai do his thing - it's adorable!

Malakai

What a busy little boy - he's so inquisitive and really wants to push his boundaries, all day long! But I can see a real understanding in his behaviour, as if he's more in tune with what's going on around, soaking everything up like a little sponge!

He LOVES to read and will go and get his books and go through them one by one, pointing at the pictures and wanting to know the words for things. I want to really nurture this love for books and keep him interested because I think books are wonderful gateways to the world.

Discipline is still a major thing for me. As Malakai becomes older he's obviously trying to assert his independence, but he's also doing naughty things like hitting his brother and throwing things at us, which I need to curb right away. Except, everything I've tried seems to elicit only laughter from Malakai - seriously - he laughs like it's a game. It can be incredibly frustrating, but this is where we are right now and I'm hoping we find a way to teach Malakai that some behaviours are unacceptable - and soon.

And that's it really - we're all well. Blessed by health, by the roof over our heads, by the help we receive daily, but our friends and family.

"D" is for "Dada"

2010-06-21T12:58:00.003+02:00

Darryl is such an amazing father - he really, really is. As the other-half of this marriage, he completes me and brings to the table so much that I can't. Thanks to Darryl, our children have two very different parents, and because of this, they have the best of both worlds - literally!

Where I'm super-anxious, a list-writer and worrier, Darryl is relaxed, free-spirited and naturally optimistic. We are very yin-yang-ish parents! But what we both have in common is the desire to meet in the middle and do the best for each other and the children.

Thanks to Darryl, the boys have a dad who will always drop what he's doing, get down on the floor, and play rough and tumble. A dad who will get up 10 times a night to soothe a crying baby. A dad who loves to be involved - nothing is out of bounds for Darryl - a dad who gets stuck into everything.

Darryl is my crutch, my soft place to fall, the one who tells me that everything will be alright - and he gives that and so much more to our boys.

I feel blessed to know and love Darryl and call him the father of my children.

"What are those things...

2010-06-15T14:54:00.003+02:00

...on the side of your head for?" - I hear myself asking Malakai lately.

Whew!

Talk about not listening...

Malakai is really getting up to mischief lately and I am finding it really difficult to get him to understand the concept of 'no'. Whether he understands and thinks its a joke anyway, or whether he truly thinks its a joke - 'no' elicits only a giggle and smile from my boy.

What do I do? I think discipline is really important, for obvious reasons - for his safety, for our safety, to stop him from breaking things (his little brother included...), and also so that he can one day be part of a peer group, contributing and getting along with everyone.

Now, I know he's not a bad kid - on the contrary, he's got such a beautiful and soft personality. He's just a boisterous little boy, exploring and pushing his boundaries. But, I still have had no clue from his behaviour as to whether any of our discipline methods are sinking in at all.

I am finding myself asking - is it just typical 2-year-old behaviour or is his Down syndrome playing a role? Is it more difficult to discipline a child who has Down syndrome? Do children with Down syndrome learn discipline in a different way? I know that Malakai having Down syndrome means that he learns things a bit slower and may not be able to generalise concepts - does this mean that discipline is affected?

At this stage, our discipline method is simply saying 'no' (a million times a day...) and it's having zero effect. I don't think that Malakai will benefit from a time-out method yet, because I don't think he's ready to understand it yet. And let me tell you - Malakai is fearless! He's climbing over things, standing on chairs, trying to get to the top of book shelves - my nerves!

What have other moms tried? What has worked for other kiddos out there? I know I'm not alone in this and would really appreciate a bit of guidance. So this is a shout out - please help!!

You know you're getting old...

2010-06-09T09:47:00.005+02:00

...when you put your back out changing your kid's nappy!

My age related illnesses aside - it's been a busy couple of weeks in the Stow household!

Malakai is officially out of school now, and not a moment too soon, as Bronchitis and the RSV virus make their rounds in our area - so many little ones are in hospital at the moment! No one tells you that winter is pure hell before you become a mom. We are only one month in and have another three to go before spring (yes, I know... we're actually very lucky to have only four months of winter... but they are a very long four months!)

Malakai is just gorgeous and he loves being home with Joyce - she really spoils him with so much attention and they play all day long. Other than catching everything under the sun at nursery school - I also decided to remove Malakai because he's going through a communicative-explosion. He is learning new signs and almost ready to say his first real words, and when I asked them at school if they were signing back to him (because I gave them copies of ASL to learn), they told me that they never noticed him signing... Now, I know that he signs all the time. So it's better that he's at home where Joyce & I can nurture his signing development and we can really focus on this area while he's so interested in it!

As for Harlan... He's really crept very snuggly into my heart now. I must be honest and say that it took me a while longer than I expected to bond with him. I think it may have had something to do with all his crying. I was mostly on the defensive with him, trying to avoid anything that could potentially make him cry. He still has his moments, but his little personality is starting to surface and he's so darn cute! He's all about his mouth at the moment - everything goes into his mouth and he's getting very good at holding his rattle and giving it an exploratory lick... He's also very verbal, goo-ing and ga-ing all over the place!

This last weekend we took the boys to a local restuarant with a large play area - it was our first outing in a while because the boys have been sick for so long. It was so nice to see Harlan enjoy the outing (he usually cries if we take him out of his routine) and Malakai had an absolute blast chasing birds, playing in the sandpit, climbing the jungle-gym and running rampant! It was my sister-in-law's 30th birthday party, so we wish her a fantastic year ahead!

Which reminds me... I'm almost 30... in just over four months time... yikes! That must be the reason I put my back out!

Malakai on the jungle-gym with Darryl

Mr. Independent...

picking up feathers on the grass

nothing misses Malakai's eagle-eye these days - he notices everything

there's a smiley boy!

I just love Harlan's little shoes!

like I said... everything in his mouth...

Darryl touching Harlan's little nose

Malakai in the sandpit

Malakai with the Amazing Aunty Sheri - she is so good with him...

Ah! Da!

2010-05-27T10:52:00.004+02:00

...am I a bad mother, or just not taking enough notice?

I have noticed for some time that Malakai wants to communicate verbally and he 'talks' all the time... just not in a language that I understand... He's using signs more often and is learning them at a rate of knots too... But speech? Well, I thought we were still months away from our first word.

Not according to our speech therapist (who we see every two weeks). In this morning's session, the ST was convinced Malakai is actually saying his first words (or approximations at words). And, when she pointed them out to me, I could actually hear them (sort of...)!

What I find amazing is the way that Malakai communicates around his ST. Where most kids don't perform in therapy or evaluation settings, Malakai was the opposite this morning. It was as if I was seeing him through the ST's eyes and his communication that much stronger and more direct.

He was telling us 'more' when he wanted something and 'finished' when he no longer wanted to play a certain game. He was signing 'more' and saying 'o', he was saying 'a' (like 'uh') for 'hello' and waving.

Come to think of it, this morning he said 'ah da' and waved at Darryl - as if to say 'hello dada' (which I always say when Darryl gets home from work in the afternoons).

How could I be so blind? He's been communicating all along and I just didn't see it. In between bath time, dinner time, bottle time, play time and everything else I try to fit into our evenings, I am not noticing that my son is actually making a go at verbal speech!

I'm feeling quite sheepish right now...

So - here I am to say Well Done Malakai! I am very proud of my little monkey boy - he's so amazing and so funny! I love him to bits!

The boys...

2010-05-25T09:46:00.007+02:00

I'm really starting to get a feel for that phrase - 'the boys...', now that I'm a mom to not only one, but two little boys!

Before my journey into motherhood started, I never gave much thought to whether I wanted boys, girls or both... It never really mattered to me. I truly just wanted healthy children, in whatever form they decided to arrive!

I must admit though, when I found out that our second (and final) baby was also a boy, I did feel a little emotional. I realised that I wouldn't have a little girl, I wouldn't have all the pink stuff - because let's face it, girls clothes are so much cuter than boys! But also, I wasn't going to teach a little girl about life as a woman, help plan her wedding day or give her advice when her first child arrives. None of that... nope.

So, somewhere deep inside, I was a little disappointed that I would not become a mom to a little girl, but I was at the same time exceptionally excited that Malakai would have a brother, someone he could become great friends with.

Once again though, I must admit, I also gave little Harlan a job before he even popped out of my stomach, never mind reached adolescence - Protect Malakai, fight for him, watch over him, love him - always.

Isn't it just bizarre how our minds work? Here I've given Harlan a job before he's even able to speak or walk - willing him to be Malakai's protector and champion, never allowing a bad thing to happen to him.

I think Harlan is up for the job though - the lungs he has on him! Harlan cries with such a force when he's unhappy... I had to laugh when my mother-in-law was convinced he was in excruciating pain, no - I said with experience - no, he's just very very vocal, and quite dramatic with his crying... And he is... believe me!

So, they are my boys, both so different, both so amazing. I dream that one day they will be inseparable. I dream that as much as I want Harlan to protect and guide Malakai, that it is not a one-way-street, and that Malakai will be giving back to his brother in his way - creating a perfectly reciprocal brotherly love.

I know that I'll probably never have a little girl - but my boys are enough thank you. They are just what I needed and they are just perfect for each other.

A Love Story

2010-05-18T09:08:00.005+02:00

My thoughts are a bit jumbled today, and I'm finding it difficult to write this post... so please bear with me because I really want to send a message about Love. However, all the words I choose seem to shrink the concept to simply life-size, when it is actually larger than life, larger than our words, larger than us.

A mother's love is something that is bigger than the sum of it's parts. That is to say, it kind of becomes it's own thing, and like a wild fire, it cannot be tamed or tied down. Sometimes it is even difficult to try and look at the love because it's burns so fiercely. That is how I try to describe it, but like I said, words just can't seem to do it justice.

What I'm trying to explain is my thoughts about Malakai's diagnosis, and how I naively thought that I was 'loosing' something, a dream or an idea... But my goodness if I had only known! If I had only known about this thing that my love would become. If only I had known that it would grow bigger and more powerful than anything I could ever hope to control.

I held Malakai last night, as he fell asleep in my arms, so content to be close to me after patiently 'waiting his turn' while I put Harlan to bed. As he lay there, his eyes were perfect half-moons framed by prolific lashes, his hand rested on my chest, I just couldn't believe this love, this wild fire that I cannot tame - that I don't want to tame.

How could I have thought that I was 'loosing' anything? I want to scream from some primal place how naive I was, how wrong, how silly... Couldn't I see? Didn't I understand? What does an extra chromosome matter when your son is lying in your arms, completely content, completely safe and secure in your love? What does it matter?

It doesn't matter. Not one little bit.

Psst...

2010-05-12T15:29:00.003+02:00

I feel like a school girl who's just been given permission to skip class... why?

Because yesterday I resigned from my day job...

For three years I've been a 'round peg' trying to fit myself into a 'square hole' - uncomfortable most of the time, and downright painful some of the time. But, in order to remain financially stable, I've done what I needed to do for my family.

Now, hoping that I could one day be at home to see my boys grow up, I've been setting up a photography business for the past three years (that is finally starting to give me some rewards as families return year after year and send their friends and family my way as well). And I've been freelance writing for a parenting and lifestyle magazine for the past year (and I am now receiving an income from that).

At the end of last year, I was between 30 - 38 weeks pregnant, working during the day, writing articles at night, taking photos on weekends, while still raising Malakai and trying to be somewhat of an 'average' wife, I was completely exhausted! But it was for a good reason!

So that yesterday... I could resign... yip!

Now, my income isn't going to be the same, but we've decided that quality of life is more important.

Seeing my boys grow up is more important. Being able to take them to swimming lessons is more important. Being able to hold them when they're sick is more important. Being 'there' so that they know me as their mom is more important. Eating ice-creams before dinner-time on hot summer days is more important. Finding bugs in the garden and getting full of mud is more important. Singing songs and dancing in the lounge is more important. Unpacking the Tupperware drawer and repacking it is more important. Bathing my babies myself is more important. Having time to actually cook dinner for my family is more important. Having a job that I actually like is more important.

I have no delusions about just how lucky I am, considering that many parents cannot choose to work from home. I feel blessed, absolutely and completely blessed.

I also feel like I've been given a 'get out of jail free' card - not quite believing that I don't have stick my round-self into a square-hole anymore... I almost can't believe it...

I feel now as though I can hope again, I can paint pictures in my mind again of how I wish it could be and try to make it real.

Words

2010-05-11T15:25:00.003+02:00

Every now and again I read something and the words speak to me - they literally pull me out of myself and demand that I awaken from my subconscious-mind and take them in.

These kinds of words are like water, replenishing my internal reserves, fighting against any famine that I may find myself in.

These kinds of words are meaningless on their own, but when strung together, they leap out and embrace me urging me to remember why I'm here and what I'm trying to do.

Words have always had that effect on me, and these are no different:

"The very least you can do in your life is to figure out what you hope for. The most you can do is live inside that hope, running down its hallways, touching the walls on both sides." - Barbara Kingsolver

I'm a Rock Star

2010-05-10T19:51:00.004+02:00

Today was my first day back at work after four and a half wonderful months at home on maternity leave.

I was meant to go back last week, but because both boys were so sick, I extended my leave by one week - so glad I did that!

After a hair-raising morning, we managed to get Malakai ready for school and keep Harlan happy the whole time! The morning run really wasn't as bad as I thought it would be.

And Work? Well, things are pretty much the way I left them last year. Only I seem to have changed. Did I love it? Well, I wouldn't say that...

Let's just say, on days like these I need to force myself to remember why I am blessed.

In a country that has a very high unemployment rate, I still have a job.

In a world where a recession has forced families out of their homes - their safe places, where they raise their families - we still have a beautiful home that meets all our needs.

In a time when divorce rates are high and parents are doing this on their own, I have a loving and devoted husband who walks by my side, really pulling his weight and supporting and loving his wife and children.

In a world where children get sick and fight every day for their lives, both my children are well again.

So - when it gets tough at work tomorrow (which I'm sure it will), I will just remind myself (in the wise words of a fellow blogger that I admire), I am a Rock Star... and I'll imagine myself wearing killer heals (not that I even own a pair...) that make me invincible. And you know what? It'll be ok.

What I love...

2010-05-09T20:06:00.002+02:00

...about being a mother (in no particular order):

Kisses. Smiles. Love. Grubby hands. Hugs. Tentative words. Humour. Quiet time. Play time. Trust. Adoration. Sleep time. Lessons. Giggles. Tickles. Sharing. Teaching. Toys. Exploration. Perspective. Priorities. Cuddles. Bubbles. Walks. Caresses. Magic.

Lights, Camera, Action

2010-05-05T20:31:00.004+02:00

So!

We're famous. Yes, you heard me. Famous... ;)

Well... at least with all those people who have nothing to do on a Saturday morning but watch TV!

Darryl and I were asked to go onto a parenting show (as part of the magazine that I write for) to talk about life as parents of a child with special needs.

I was excited to advocate for Down syndrome, and after some convincing, Darryl agreed that we could do the show - and 'do it' we did!

I don't remember exactly what we said, but I know it came from the heart and was positive. I do remember them asking if we'd have more children to which we answered "already done and 12 weeks old!" and then they asked if we were scared that our second child would have Down syndrome... Our answer was instant - "we weren't scared because if it happenend again, we'd be completely cool with it." We explained how Malakai was amazing and wonderful and light of our lives.

Maybe one person out there watching has a decision to make, and maybe we've opened the door ever so slightly - the door to acceptance and giving a little one a chance at life. At the very least, I hope we've shed a more positive light on Down syndrome - never a waste of time!!

Oh yes - and if I don't look quite like myself... you know... it's because the make-up lady lost the plot with the eyeshadow and the lipstick (two things I never wear...), but they assured me I'd look 'normal' on screen. *hold thumbs*

Oh yes, so be on the lookout for Mamas 'n Papas (the show) on SABC 3 at 11:30am on Saturday morning (8 April).

Bye Bye Baby

2010-05-05T20:22:00.003+02:00

Jan 1996 - April 2010

Bye my girl - you really had a good run and 14 years of dedication to our family is worth mentioning and being thankful for.

I remember when I first adopted you - I couldn't decide on a name, so I called you my 'baby'. This name just stuck and that is how you will remain in my heart - my first baby.

This weekend I will go buy you a tree my girl, and your collar will have it's place on the branch. There is a spot right outside the front door, that I pass every day, that is perfect for your tree. And I have a tree in mind - it's fast growing and strong (like you were), it has light bright green leaves (like your spirit) and the most prolific little purple flowers (for my girl). It is simply a beautiful tree.

I will miss you and I am sorry that you are gone.

One day, my girl, we will meet again and I look forward to seeing the spring in your step and many wet kisses.

Mwah!

Too much to say!

2010-05-02T10:39:00.004+02:00

I don't know what to title this post, because... well, there's just too much to say.

I've been very quiet in bloggy world because my real world went into overdrive for a while there - and today, finally, I have found a space to breathe.

So - where to start?

The Sickies
Here we are, barely a foot into winter's corridor and my little ones are terribly sick. Malakai got a cough last week that rapidly turned into bronchial pneumonia. He was as sick as I've ever seen him - not eating, drinking or even moving for a good few days, temps up real high and a chest that sounded like it hurt to breathe. Thankfully, after a coarse of antibiotics, a concoction of other meds and nebulizing every 3 hours for the last five days, he's on the mend.
Only thing is - now Harlan is also sick, coughing like a veteran smoker and blocked up real bad. We're doing everything we can to stop him from getting worse (never mind better) at this point.

The Holiday
Every year we have an annual family holiday with my sister's family and our mother, booked and paid for months in advance. It fell slap bang in the middle of our fight to beat the sickies - and we naively thought we could actually go away (with two sick boys) and kind of, sort of enjoy it... What?? "It's be like home, but with a better view," we tried to convince ourselves beforehand. No. It sucked. Really bad. Seriously.
We left a day early and I don't have even one photograph of 'holiday'.

Saying Goodbye
While on holiday, having a really horrible time, my sister-in-law called to say that she found my eldest dog (one of three little mongrels), in the bushes after a night out. She wasn't walking. OK, so Baby (her name) is 14 years old, so I thought it might be a stroke. When the vet examined her, it was evident that one (or both) of the other dogs had fought with her and given her a really nasty bite on her side.
Baby, a little fat fluffy dog, had been with me since I was 16 years old. Ever a feisty little thing, she was always up for a rough-and-tumble game.
It was through Baby that I had my first epiphany - that love didn't have to said, it had to be done... love was about touch, about a stroke on the head, about a wagging tail and bright eyes peering back at you. You didn't talk about love - you did love.
We were home two days later and we weren't sure if Baby was going to make it. She showed signs of alertness, but wasn't drinking or eating. I hoped for the best (especially since she was too weak to operate on) but I expected the worst. In amongst this, Darryl and I were battling to care for our two sick babies, never mind having time to care for Baby. Luckily my mother had returned to our house with us after the mishappen holiday.
On our first night home I was already in bed, alseep, when my mother sat with Baby, holding and stroking her head while she took her final breath. My mother didn't wake me, and she gently wrapped Baby and put her outside. The next morning I noticed that she wasn't in her soft bed that we had made for her to recover in and my mother broke the news to me.
I cried because I will miss this little fluffy fat dog. I cried because Baby's been part of my life for 14 years. I cried because in the end she slowly died over 3 days, and this hurts my heart.
But, I am grateful for my mother, because after a week of two very sick children and a holiday nightmare, I was completely exhausted and I don't think I would've handled Baby dying in my arms. It would have killed me. But for my mother - I am so grateful.

My mother...
...the woman who picked up all the flack over the past week and a half. My mother helped administer medicine when Malakai cried his little eyes out. My mother sat up with Malakai when both myself and my husband were too tired to carry on. My mother cooked meals and fed us when we hardly had time to shower. My mother cared for and acknowledged my Baby dog when she most needed it, something I am not sure I would have been able to do.
Thank God for Moms!

Work
And! Now! After a hellish week and a half, I am going back to work next week. I've been on maternity leave for 4,5 months - I don't even know if I remember how to do my hair and dress up respectably! LOL!

Such is life.

Sometimes everything comes crashing down and life spins on the very edges of our control, threatening to engulf you in utter chaos. This happens more often than it used to, with two little ones in the house. At least, in the midst of it all, I am conscious of the fact that it too will pass and calm (or rather a two-small-baby-version of calm) is not too far away, if I just hold tight, focus on what needs to be done, and do it.

So, I guess I'm trying to say - I hope my boys get better soon, I love my mother for her utter strength and support and my heart hurts because my Baby dog is no longer with us.

Can i have a side-order of chalk...

2010-04-18T19:42:00.006+02:00

...with that cheese?

My mother-in-law calls them The Angel & The Emperor... I call them chalk and cheese... Malakai (aka angel) and Harlan (aka emperor) could not be on further ends of the spectrum!

Malakai is a sensory-junky! In fact, he'll give anything a lick (bricks, the dog, even Harlan gets a lick whenever Malakai gets the oportunity!)... While Harlan is a sensory-phobe. Everything seems to be too much for his little system - just waking up is difficult for him and often (in fact the only time) he'll have a 'freak-out' session within 5 minutes of waking up - it's beserk I tell you.

Malakai LOVES to sleep. At 20 months old, Malakai still has two daytime naps (about 3 hours in total).... While Harlan is ALLERGIC to sleep. I am lucky if the little tank sleeps for 45 minutes 3 times a during the day.

Malakai is so relaxed, chilled out, easy going... Harlan is very fussy, very high maintenence, super sensitive...

I think that our journey is just about to get more interesting - with Harlan in our lives, adding his little bit of spice to the mix.

Chalk and cheese I tell ya!

A portrayal of beauty

2010-04-14T10:32:00.002+02:00

I wanted to steal a blog post from another blogger - Ruby's Life - and post it here.

Alas... I am just not that technically advanced - LOL!

So please, if you'd like to smile and appreciate something truly beautiful - please go visit this post - it's just breathtaking!

My two favourite things - an extra chromosome and a camera! :)

We will not stop...

2010-04-09T08:02:00.003+02:00

I recently wrote an article about the Special Olympics, and as usual, as I researched the content, I came across things that I never knew. Things that made me pause and think for a moment.

The Special Olympics Africa website is so inspiring! Each page starts with a thought-provoking quote, like this one:

"Every day on dusty fields and grassy tracks across the region our athletes strive, overcoming obstacles, trying, succeeding, and exceeding our expectations. Reminding us of the can in every can't, the ability in every disability." - Dr John Dow Jr. (regional managing director)

However, there are also quotes like this one:

"Do not hide your special children. They are part of us, and denying them play, exposure and association is violating their basic human rights." - Thomas Gathu (Special Olympics Kenya athlete)

I live in a beautiful country - South Africa - that I am very proud of. It is part of the African Continent and this continent is filled with loving and friendly people. BUT, this continent is also filled with poverty, disease, illiteracy and lack of resources to fulfill basic human rights.

As the quote above indicates, in Africa, those born with intellectual and physical disabilities are often hidden in back rooms, away from the community to which they should belong. Their parents are ashamed, scared or just not educated enough to understand that there is hope for their little children.

Because home birth is an African tradition, and access to hospitals and clinics are so rare, no one even knows these children exist. I heard a story the other day of a woman with a mental handicap that has already had several abortions because she's been raped by men in her local community. Her daily job? To go fetch water two miles from home, every single day. She walks, unprotected, uncared-for... all this way. every. single. day.

Perhaps her mother does love her? Perhaps her mother knows of nothing else that she can get her daughter to do? Perhaps she even likes to fetch water, to feel as though she's contributing? But this is it - the sum total of her life, so far from what I would imagine her potential could be if she had access to resources.

For every story we hear, there are another 10,000 that we don't hear. According to the head of the director of Special Olympics South Africa, Annamarie van Wieringen, we have a total of 1.3million people with intellectual disabilities in SA, of which only 10% have access to resources such as therapists, schools, training workshops etc. That is only 130,000 people with mental disabilities... only 130,000 that actually have the resources to help them to reach their full potential.

Another shocking discovery? That children with Down syndrome are put last on a very long list of children who need heart operations in our State Hospitals. Why? Because they are seen as a 'lost cause'. So, if you are not one of the very few lucky people to have medical insurance, and your child has Down syndrome and a very common, very fixable heart condition, your child will most likely die.

When the Special Olympics team tour Africa, one of the things they do is offer free medical checks to the participants. For most, it is the first time they have ever been seen by a medical doctor.

So - why am I talking about this? What's the point? Can one person make a difference?

I think so. If I talk about this, maybe someone else will start talking about this, and then maybe a few more people will start talking and so the ripple grows wider. We have to start talking, we have to share hope, we have to educate, we have to expose the truth, because the truth is often hard to swallow, but as the old adage goes - it will certainly set us all free.

Free of prejudice. Free of stigma.

I will end this with a noble vision from the Special Olympics Africa website, which talks about Africa and the success stories they have told so far:

"showing courage, overcoming obstacles, trying, succeeding, and exceeding our expectations. And we will not stop. We will not stop until we have reached the estimated 190 million individuals [in Africa] with intellectual disability that are hidden in our neighbourhoods and communities. We will not stop until we have told 190 million stories that end in victory."

Pictures speak a 1000 words...

2010-04-08T10:44:00.003+02:00

Go here to see Mencap's Snap Photography Competition - they have chosen 14 of the best photography entries that have something to do with celebrating a person with special needs.

Those who know me know that I LOVE photos - I think pictures are far more powerful than words at times... My favourite of the 14 pictures is above - a STUNNING picture taken by a Chinese man called Kwok.

Go and enjoy!

Brothers

2010-04-05T09:16:00.003+02:00

I sometimes have to pinch myself to remember that I'm a mother... never mind a mother of two boys! How my life has changed from a mere five years ago, when Darryl and I were living aside a loch in Scotland, working in a hotel, with no responsibilities at all! We now have a house, cars, and insurance, we own a washing machine and tumble dryer, we work from 9-5 and submit tax returns, and we have two little souls who depend on us.

Dependents - wow.

I wouldn't change it for the world though - life is certainly more complicated and our time is not our own, but as much as our lives have become chaotic, for every busy moment there is a more love, more understanding and lessons learned.

Malakai is just adorable with Harlan - he'll shoot over at a speed (sometimes I get a fright and think he's going to hurt Harlan) and stick a wet, sloppy kiss on Harlan's face. Harlan is getting cuter every day, giving out many more smiles and even little gurgly noises (like he's actually trying to talk!).

Life certainly is different, chaotic and a tad messy. I'm putting my very own washing machine and tumble dryer to good use these days (LOL!). Our floors at home are filled with toys, stray socks and Malakai's un-eaten biscuit crumbs, but our home is also overflowing with Life, Love and Learning.

As I write this, Malakai is at Granny Leslie (a friend's mom) for the morning, Darryl is off getting his 'bush therapy' on his offroad bike, and I'm at home (still in my pj's) doing some washing, watching Harlan sleep and updating my blog while sipping on a hot cup of coffee. The house is in a rare moment of quiet...

Aaahhh...

Gratitude

2010-03-30T20:03:00.005+02:00

Upliftment. Gratitude. Thankfulness. Grace. Glorious Contentment. Whatever you call it - there is no harm in indulging in some every day.

So, today I am grateful for my two boys. I am completely astounded (I feel like I get hit by a bus) when I look at Malakai and realise he's mine... *smile* He is just so absolutely gorgeous, so clever, so gentle and funny. Little Harlan is starting to grow on me too - his little smile, given when I least expect it, really lights up my day. I'm getting to understand his little personality, so different from Malakai's (of course!) and I'm grateful that today that I was able to understand him well enough to avoid a meltdown of proportions that only Harlan is able to achieve :)

I am grateful for a wonderful husband, who loves me and who thinks of me. Yes, I really love that he thinks of me, considers my feelings, considers my needs, and then tries to meet them. He makes me feel very special and I am so lucky to have him as my husband.

I am so grateful for my husband's love of his children - his bond with Malakai is just beyond words - he absolutely adores his firstborn. He also gives Harlan the kisses and hugs that I sometimes forget in the day-to-day survival of a small baby with colic. I am grateful for that perfection - what I am unable to do, my husband so naturally picks up and runs with. A beautiful dance we have - together.

I am grateful for so many things - nik naks for breakfast, Malakai's first picture, Harlan's gurgly noises, Darryl's love, my beautiful patio to which I often escape, my blogs that inspire me every day, a mother and sister who I can turn to at anytime for words of encouragement and a giggle every now and again, wonderful friends who brighten my days and lighten my load... too many things to mention!

Here's Malakai and Natalia - looking so great in matching red outfits - sharing biscuits!

Yum Yum!

More please?

My beautiful boy!

A little smile curling Harlan's lips...

Now that's a smile that reached his eyes!

All this 'happiness' is tiring!

Contemplative...

Sometimes, when I feel like crying...

2010-03-24T09:28:00.002+02:00

... I just remember what my mom always says -: take the most peaceful route.

No matter what our plans - and I'm not saying we mustn't plan - but sometimes no matter how hard we dream and we try and we plan, things just don't work out as we want them to. I know this, I'm an adult... but it still hurts a little.

So, last night, while talking to my mom about my failed attempts and way-laid plans, she told me to imagine a river flowing...

"The water flows around the rocks and pebbles. No fight. No trying to move the rock. Just flowing, peacefully, around the rocks and pebbles," says mom.

So - I'm going to try to be the river, flowing peacefully around those *friggen* rocks and pebbles. I'm going to try to remember and really believe that I don't always know best, and that everything is perfect as it is. I am going to try to let go of my ideas of what's best and accept what is infront of me and celebrate in spite of myself.

If this is all a bit Top Secret and makes no sense, it's because these days you just don't know who'll be popping in to read your blog... so I can't share the details.

I'll just go and print the bolded-italic words up there and stick them to every surface in my house to remind myself incase I forget and want to cry...

World Down Syndrome Day 21.03.10

2010-03-19T13:08:00.006+02:00

So here we are - our second World Down Syndrome Day, and yet it feels like Down syndrome has been a part of our lives for much longer (like an old friend).

We know it by heart, I sometimes feel.

And then again, it just isn't the big heavy cloud floating over our lives that we thought it would be. It keeps itself very politely in the background, never overbearing, never overwhelming. Every now and again we pay it some attention - like when Malakai has therapy or we consciously make a decision to 'work on his fine motor skills', for example.

Every now again I actually catch myself remembering that Malakai has Down syndrome - how odd? We just don't allow it permeate every aspect of our lives. Our little boy is our little boy, like any other amazing, beautiful, precious child.

So, what I'm trying to say is this:

As a person who may have a prenatal diagnosis or to parents who have had a child recently with Down syndrome, it is all a matter of choice. You can choose to focus and run your life around the diagnosis, or you can choose to let your little one just be. Be gorgeous. Be loved. Be amazing. Be perfect.

At first it may be scary, but that feeling passes very quickly (quicker than you'd ever believe I tell you!). When you're over it you'll realise that your baby, just like any other, is super soft and smells so beautiful, that your baby loves cuddles and adores your attention. You'll find that your baby will develop a little personality and they'll bring such joy into your life.

And then! Let me tell you! When your baby starts to sit, crawl, walk, and eventually attends his first day at creche - well, nothing beats that feeling!

I believed once that it would take more... more effort, more love, more time to raise a child with Down syndrome. Well, I can't speak for anyone else, but my honest experience is that that is just not true. I have not spent more of anything (time, love, effort) on Malakai - no more than I would have should he have a typical number of chromosomes.

I believed once that it would be really hard... hard work, hard to cope, hard to accept. Well, I can't speak for anyone else, but my honest experience is that that is just not true. I never found anything to do with Malakai (and his extra chromosome) hard. It's just hard to not want to eat him up!

I believed once that I wanted to go to Italy... for the sports cars, the flashy clothes and the trendy shops. Well, I can't speak for anyone else, but my honest experience is that that is just not true. Holland has been the most welcoming place, filled with warmth, sincerity, and purpose. I just love the tulips, the windmills and the art.

So this is my rather haphazard post for World Down Syndrome Day - if anyone's been able to actually follow my train of thought...

I love my son so much it hurts. I look at him and I see it all - peace, determination, sincerity, joy, love, adoration, beauty and perfection.

plain. and. simple.

Lights... camera... action!

2010-03-19T08:58:00.004+02:00

For a photographer-mother you'd think I'd have posted more pictures of my new little bundle of joy?

Well... it hasn't been that easy (or inspiring) up until now - I'll be honest...

For the first six weeks, Harlan's awake-time consisted of either eating or screaming (not very inspiring on the photo front). And then, when he finally fell into a deep sleep, mommy just wanted some time-out! We've had a bit of a challenge with little Harlan, who will still stay awake for 10-12 hours straight, with perhaps a 10 minute cat-nap here and there... But at least now he can be awake and not cry. We can have a bit of tummy-time, get a smile here and there... and... even do a mini photo shoot!

Enjoy Grannies!!

Moving the world...

2010-03-18T15:01:00.004+02:00

By now I think everyone in the Ds bloggy community has heard of this blog. With well over 2500 followers (yes people, I didn't add an extra zero...), there has to be reason. Kelle recently had a beautiful baby girl who happens to have Down syndrome, and the journey she has walked from birth, shock, grief, acceptance and celebration has been put out there for everyone to see... and love. Kelle hasn't held anything back, and her honesty and raw emotion is incredibly moving.

I personally aspire to have the kind of creativity & talent (for writing and pictures) that Kelle has. But if I didn't have those things... I'd definitely settle for a little of the magic dust she seems to sprinkle all over her life - in big fat doses!

Well, CNN seemed to think so too, and this past Tuesday she was featured on a program called Connect the World (previous 'connectors' being the likes of the black eyed peas, andrew lloyd webber, hugh hefner & eva longoria... and I can't remember the rest, but they're like... famous!)

Go here to view the interview and here to see Kelle's blog.

I'm proud that someone within our community, living life and loving someone with a special need, has made such an impact!

First Day at Creche :)

2010-03-15T19:21:00.009+02:00

So, today was the day! Little Mr. Malakai had his first day at creche!

What a busy morning, trying to get Malakai ready while still keeping Harlan happy and getting ourselves dressed! Whew! Who knew it was this complicated? But I am sure that it will get more streamlined in time...

Malakai was a little shy when we dropped him off - Darryl and I sat for a few minutes in his class, watching him eat his breakfast along with the other little ones at their mini-tables. We kissed him and he waved goodbye - and then we left... It was a little difficult, wondering how he would cope.

I called the creche and they gave me an update - telling me he was sleeping soundly and that he only cried a little bit, but they think it was because he was tired and not because he was sad or anything - yay! My little brave man!

This afternoon we collected him (half an hour early...) and he was sleeping in the arms of one of the carers - they take extra special care of the little newbies (which puts my mommy-heart at ease). Malakai spent the rest of the afternoon playing with Joyce - I think she missed him more than me!

I just know this is the best place for him, and that he's going to learn so many new things!

I am proud of my little boy - I am proud that he takes Life in his small 19-month-old-long-legs-stride, almost as if he looks at the rest of us and it just comes naturally to him to be patient with our flaws. For all our fears and judgements and 'what ifs', Malakai just smiles and carries on, persistent in his thirst for experience. And along the way, as he meets new people, and they all just say - what a beautiful little boy.

I couldn't resist...

2010-03-10T21:11:00.003+02:00

... he is just too beautiful!

My little angel boy is becoming a big angel boy! Everyday I am amazed at how gentle and how loving he is with his brother (and everyone really...).

I keep looking at him and thinking to myself - how could I have cried? Little did I know that he would be the light of my life. Little did I know that I had no reason to cry, no reason to be sad.

Of course, I'm talking about the day Malakai was born and the utter devastation we felt at his diagnosis.

A little over 19 months ago, my life changed forever. I will never forget the short text message we sent all our family and friends when he was diagnosed. I was adament that there would be no rumers, no hurried whispers before we entered a room - no - we would announce his diagnosis to our world with confidence and positivity (even though I cried more that day than any other in my life).

Malakai, a true messenger from God, was born with Down syndrome. He is healthy, he is precious, he is the light of our lives. We thank you for your support and understanding as we start on this journey that Malakai has brought us.

How true - that Malakai has brought us closer to understanding the profound spiritual message that only a little boy, with a big smile and open arms, can bring us. How true - he really is the light of my life and through him my journey has become that much more rewarding, that much more amazing and that much more Hope-Filled (drenched in hope in fact...).

Reality Check...

2010-03-06T21:11:00.002+02:00

I've been on maternity leave since December 18th... so I've kind of lost track of days, weeks and even months...

I realised this week that we're in March! What???

I will be going back to work in May, so I have less than two months left at home.

We are very blessed to have a full-time nanny, a woman that I owe so much to... She's Malakai's second mother. I know that when she looks at Malakai she sees only his strengths, she believes the sun shines from his face and that he's fantastic in every way! She also lets him get away with murder, and he has her wrapped firmly around his little finger!

The reality though, is that she cannot care for Malakai and Harlan, and so I have known for some time that I have to find a creche for Malakai. I was so busy at the end of last year, and then everything was closed for December holidays and then... well... the days, weeks and months disappeared!

So, this week I made it my mission to find somewhere for Malakai to go to. I must admit I was a bit nervous. Do I tell them he has Down syndrome? Does it make a difference? What if they say no based on his extra chromosome? Can they say no?

I eventually found a place close to home that had space (obviously I don't plan far enough ahead, because the majority of places were full) to take Malakai. I realised quickly enough that they had space because they are particularly expensive... But I decided to go take a look anyway.

Joyce (Malakai's nanny) and I took a walk and paid 'Opti-Baby' a visit on Friday afternoon. I took Malakai on the tour with the lady at the creche and Joyce waited with Harlan in reception. Well, I must say I was impressed, but what really amazed me was that when I put Malakai down in the class he would attend he was OFF! He didn't look back at me once.

I've known for some time that Malakai is bored at home, that he craves interaction and that he's frustrated with seeing the same faces and same four walls every day. But this was unbelievable! It was as if he'd been set loose in a candy store! He was all over the place, climbing up the soft blocks, checking out the other kiddies, flirting with the carers...

I let Joyce go and fetch him - knowing that she'd want to see him 'in action' (her mind also needs to be put at ease - she is incredibly fond of him). She was beaming from ear to ear when she brought him back to reception and we started our walk home. She described it as if he'd been there all his life, that is how at ease he was.

So, the place is pretty much sold for me - I'll go without a few things in order to afford this place. Malakai clearly loves the place and the fit is just right. They have other children who also have 'special' needs. A little girl who is deaf and another little boy who has a condition where he has no muscles in the right side of his chest. They've also had a little boy before with Down syndrome, but his family has now relocated. So they have no issues at all.

To top it off, this place offers all meals (which are outsourced through a catering company who has set up a dietitian-approved menu), as well as two special classes a week (baby-nastics and Kindermusiek), they also do school-readiness classes, AND you can go onto the Internet and see what is happening at any time of the day through special cameras set up around the creche.

BUT - my heart just swells when I remember how happy Malakai was to be 'set loose'. It was as if he blossomed before my very eyes. My little monkey.

So, now I can go back to work knowing that Joyce will be dedicated to Harlan and Malakai will be having a ball at his new creche!

Spread the word...

2010-03-03T20:26:00.003+02:00

Today is the day...

Spear-headed by the Special Olympics and Best Buddies International is a campaign to stop the use of the word 'retard' or 'retarded' in everyday speech. You would think twice about using the 'n-word' word (or in South Africa... the 'k-word'), so we want people to think twice about using the 'r-word'

I wanted to write something profound and long-winded, but simply put:

It hurts people. So please visit the following link and make your pledge:

www.r-word.org

Go on - show that you're a fan!

Change the conversation and drop a pebble in the pond...

Waterbaby...

2010-03-02T10:50:00.003+02:00

Malakai's Durban Trip with Daddy

Oops...

2010-03-01T08:47:00.002+02:00

There have been two big "oops's" this past weekend...

Firstly, Darryl took Malakai on a holiday down to his mother's in Durban (by the sea...)! It was a bit of a last-minute decision and I was left feeling quite unsure about my little boy being away from home without his mommy for the first time... But, with a clenched jaw I waved them both goodbye on Friday afternoon as they left for the airport.

I'm told Malakai had a smashing good time - playing on the beach and doing his fast crawl (arms and legs straight out, bum in the air, squealing with delight) straight into waves breaking on shore. He let the water wash right over him and did a few nose-dives straight into the wet and slurpy sea sand. I am waiting patiently for Darryl and Malakai to arrive home now so that I can see all the pictures they took!

Speaking of waiting - they were meant to be home last night, but it didn't pan out that way and they didn't get on the flight... Oops...

I was devastated that I wasn't going to see them both safely home last night! But they were on stand bye this morning have just boarded a flight and are on their way home now - so I'll see them in a few hours time.

For my second Oops?

Well, despite all the things we tried to calm and soothe little Harlan (and we tried many many things), we didn't think to swaddle him. Yes I know I know... most basic rule of newborns... But he didn't appear to like being swaddled and Malakai was the same (we stopped swaddling Malakai when he was just two weeks old and it was fine by him).

But my sister, in all her awesome brainy-ness, told me "swaddle the child Loren, he's clearly feeling insecure...".

Duh. Aha. Click. and all the other descriptions for when the penny drops...

I have a new baby now. Swaddling him and playing womb-music and he puts himself to sleep, deeply and peacefully and for hours on end... He still gets terrible winds that shoot out of him sounding like missiles being launched, but once we're through that and he's comfortable (yes, comfortable for the first time in two weeks!), it's like he's a new little baby.

Having found the obvious error in my mommy-ways, I feel like a bit of dork. Like I've left my new baby to fend for himself in the world, with no support and no security, for the past two weeks... I feel terrible about this! It was so OBVIOUS! Staring me in the face and practically slapping me silly, but I didn't see it. Oops...

So, what have I learned? That every child is different. That just because I'm already a mom doesn't mean I have nothing left to learn. That it takes time to get to know your baby and that what worked last time will not necessarily work this time.

One Weekend and Two big "Oops's"

Beautiful Blogger Award

2010-02-28T16:35:00.005+02:00

Jessica, mommy to handsome Drew, from A Deeper Shade of Love (visit her blog here) nominated me for a Beautiful Blogger Award! Thank you Jessica - just when I thought my whining might be deterring fellow bloggers from coming to visit! LOL! It feels really great to be recognised by another blogger, and so knowing that there is a connection made, across the most vast of distances!

The rules of accepting this award are as follows:

1. Thank the person who nominated me for this award (tick!)

2. Copy the award and place it on my blog (tick!)

3. Link to the person who nominated me for this award (tick!)

4. Share 7 interesting things about myself

5. Nominate 7 other bloggers for the award

Ok! So seven interesting things about myself?...

1. I am a Virgo, and because of this I tend to be a very critical and analytical person - I often wish I could relax and 'let go' more, but as the years have gone by, I'm learning to accept myself as I am...

2. I will be turning the big 3. 0. this year... yikes! Time has definitely flown by, and I don't feel a day older than 22!

3. I remember being about 4 or 5 years old and my mom told me that as you get older the years fly by faster. I literally thought that they did and dreaded getting any older. I thought that by the time I reached 2o a year would last only a couple of months, and by 30 a year would be finished in a matter of weeks and so on... Needless to say, I had quite a literal-mind at that time! LOL!

4. When the Virgo in me isn't at full-tilt I can be quite a creative and eccentric person. As a 17-year-old I shaved all my hair off (after a particularly horrible break-up with a boyfriend). I loved it, but it soon wore off when I was referred to as a boy wherever I went... Still, it it something I am proud to say that I had the guts to do in a world where long blond trusses are practically expected in order to be called 'woman'.

5. I love words. I love them in written or spoken form. They move me. They inspire me. My mom always tells me the story of how as a 3-year-old I started crying one day and when she asked me why I was crying I told her that the words of a song on the radio were very sad and they were making me cry.

6. Speaking of crying - I was a very sensitive little soul as a child. I cried for weeks when I found out Steve Wonder was blind... I am not as sensitive these days and hardly ever cry - I am still wondering if that is a good thing?

7. If money, location, career was no issue and I had no boundaries at all I would choose to take my family and live on the edge of a lake, nestled in between massive mountains, in a small cabin at the top of a winding tree-lined drive. I would grow my own food, I would write of my life, I would photograph my boys every single day, I would cook my husband wholesome love-filled dinners. I would lay out his clothes for work the next day and pack him lunches that included small love-notes. I would teach my boys to grow and love plants. I would do many differently.

OK - so the 7 bloggers I nominate (in no particular order)?

1. My Life with Gabriel - I just love the way that Lee writes about her precious Gabriel, I feel she really helps so much and gives such great advice, as well as a glimpse into Gabriel's life.

2. Bridget's Light - Again, a blogger whose words and posts are so inspiring. And Bridget is just so friggen cute too!

3. Praying for Parker - what a well-written blog! I just love the 'everyday-ness' of this blog as well as the beautiful pictures!

4. Enjoying the Small Things - a new blog that I follow (I think I'm follower number 1852!). But truly, someone I think is a really gifted writer and photographer, as well as someone who literally says 'yes' to life, every. single. day.

5. Conny Wenk - again, just so inspired by the images that Conny captures - she just inspires me!

6. Three's a Charm - This is the first blog I started following when Malakai was diagnosed with Down syndrome and it's still high on my list of absolute favourites!

7. Emma Sage - I also love Tara Marie's creativity, zest for life, her calm spirit.

Whew... coming up for air

2010-02-23T15:51:00.003+02:00

I've been wondering if I should sugar coat my last two weeks with pretty adjectives that come from an embarrassed (or guilt-induced) place, or if I should be honest.

Well... honesty has always been the easiest route for me (lying entails actually having to remember the lie, and with my porridge brain, that's not even a remote possibility at this point...).

It's been hard. Very. Flipping. Hard.

I was always aware that Malakai was an 'easy' baby - in fact I didn't know he could cry until he was 3 months old... But I didn't know that babies are usually this difficult...?

Harlan has severe cramps (from what I can tell) which keep him awake, and therefore overstimulated and crying, for hours on end. Today we had a 6-hour-long stretch of awake-ness interspersed with shrill and inconsolable crying. I'll be honest - I just cried myself at one point... desperate for some kind of respite from this little person.

I have tried all manner of things, from colic drops to homeopathic tablets to letting him sleep upright in his little car-chair to playing womb music to carrying him in a sling to feeding him sitting up and feeding him lying down...

Add to this the fact that we've all be sick for two weeks and you have yourself a recipe for some tension, headaches, sleep-deprivation and general grumpiness X 1000.

Malakai was diagnosed with croup last week - which I am so upset about because I know this is a recurring illness! My poor baby! Harlan still has a runny nose and is coughing (along with Darryl and I). So our house is filled with antibiotics and all other medicinal paraphernalia, none of which I can take myself.

I do try to always put a positive spin on my posts (and my life in general) - because I don't see the point in wallowing in self-pity - but this has definitely been a challenge.

And I feel so ridiculous! Many people have more than one child! I am not the first or the last, so I feel as though I am not special enough to feel like I'm drowning here... My logical brain is telling me to get with the programme and stop being so silly, but still... I feel like I'm in over my head.

What I can say though, with a certainty that comes with a baby finally fast asleep, with the last 15 minutes to myself to recharge and breath deeply, is that I know it will be ok. I know that it will get easier and that Harlan will eventually stop crying. Of this I am certain.

doctors doctors everywhere

2010-02-15T21:19:00.002+02:00

Well, it's been a busy week - yes sir-ee...

Harlan developed very gooey eyes (for want of a better description) last Monday and we paid the pead a visit just to be on the safe side... the following day he developed a cough and a sneeze... oh no...

Two doctors visits, antibiotics, eye-drops, nose-drops and regular nebulizing later, we're a week down the road and all four of us are sick...

We're all feeling pretty sorry for our little selves right now...

Our doctor's visit today confirmed that Harlan is ok, as long as we keep him from getting any worse. Poor Malakai has a runny nose and his lack of eating (or even drinking his beloved juice) tells me he's feeling as bad as mommy... Darryl is able to take all sorts of medicine, so he's pretty much got the best deal out of all of us... I'm actually jealous every time he drinks a corenza-c! LOL!

And all this is the middle of a very hot heat wave... I was really blindsided by this flu bug, at this time of year.

Hopefully the coming week will bring with it better health - and higher spirits!