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!

Tuesday, November 30, 2010

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...

Monday, November 22, 2010

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...

Friday, November 12, 2010

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.

Tuesday, November 9, 2010

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!

Tuesday, November 2, 2010

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.