Holiday Pictures... so far

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

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 :)

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?

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...

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

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...

... 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...

... 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.