Special Request

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

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.

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

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?

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

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

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

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!

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

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

Talk to me baby!

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?

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

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

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

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!