We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Sunday, April 18, 2010

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

...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!

Wednesday, April 14, 2010

A portrayal of beauty

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! :)

Friday, April 9, 2010

We will not stop...

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."

Thursday, April 8, 2010

Pictures speak a 1000 words...


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!

Monday, April 5, 2010

Brothers




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...

Tuesday, March 30, 2010

Gratitude

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...

Wednesday, March 24, 2010

Sometimes, when I feel like crying...

... 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...

Friday, March 19, 2010

World Down Syndrome Day 21.03.10

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!

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!!










Thursday, March 18, 2010

Moving the world...


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!

Monday, March 15, 2010

First Day at Creche :)
















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.

Wednesday, March 10, 2010

I couldn't resist...

... 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...).