There’s been a lot going on lately. Time seems to be winging its way away ever more quickly and before I know it, things that need my attention are suddenly standing in front of me. One day you think you … Continue reading
*This story was originally published in Voice The Journal of Down Syndrome Australia, Issue 1 2016 and republished with permission. I am the author of the original article* Times are changing rapidly for people with Down syndrome as every year more … Continue reading
Many years ago I met a friend’s little girl for the first time. I’d say she was about 9-12 months old. Cute was an understatement but there was more than that. She was very present. I held her in my arms and felt an overwhelming sense of peace. She reached out and touched my face and explored its features. She was calm and contented. I said to myself — I want to order a baby just like this. She didn’t have Down syndrome, I didn’t know anyone with Down syndrome at that stage. I was years away from having a child but in that moment, I felt taken over by a feeling that I didn’t understand at the time but I am very familiar with now. I thought it was the cute baby that affected me…but I now know there was something else.
I read a lot of different views about disability and difference. Some of them I agree with some of them I don’t. Over the past few years I have certainly come to the realisation that our kids are just themselves, not angels sent from heaven or burdens on the world or anything in between. They just have extra genetic material causing some characteristics that many share and some medical conditions that affect some more than others.
Logically I know this. My reasonable, rational mind thinks about this and knows it to be true….
…but every now and then I am caught off guard by that something I can’t quite put my finger on. The advocate in me says it can’t be true. Our kids aren’t miraculous or unicorns personified. They aren’t sent here by a higher being to transform us mere mortals into exceptional versions of ourselves.
…and yet there is still that thing I can’t quite align with my rational mind.
There is something. It’s there fluttering away quietly in the deep recesses of my heart. It’s the feeling of breath leaving my lungs with joy. I have tried so hard to explain it over the years and I can’t. It’s a purity, a soundness, a deep rooted sense of connection I have with Wade. He sees me and gets me.
This is obvious though. I am his mother. I grew his tiny human form inside my human form and it’s obvious that we share some deep physical and emotional ties that linger long after the cord is cut…like any mother and child.
But…I see it with others too. Wade has a light that people don’t know they are looking at. Like a black light lamp that can only be seen at certain frequencies, people are drawn to him without really knowing why.
Early on I was sure it was only because he had a disability and everyone was just kind enough to be !!!SUPER NICE!!! to me because obviously I would need some extra ‘big ups’ to get through my day….(sarcasm font) but as time passes I know there is something more than that. They are seeing his light and are drawn inexplicably.
Over time I have learnt to accept it and not try to find an answer for it. He has something…something precious and different and captivating.
I know this because now I am caught breathless when I see the same ‘whatever it is’ in other children too. My heart literally swells when I see it in their eyes.
When I was pregnant I saw a photo of a young boy around 4 or 5 years old in a book of stories from other parents in the Down syndrome world. The book had photos of many children who were all beautiful and charming but when I looked at this particular photo, my chest tightened and tears began to run down my face.
I hadn’t met Wade yet. I didn’t know he would have the same blonde hair, the same eyes and the same look. That…something. The peace, the contentment, the feeling that life just is. The look that says ‘Hi. I’m here… that is all.’
Beyond that look is his smile. A whole body, whole spirit, shine of joy that melts you with one look. A cheeky grin that tells me that no matter how naughty he is trying to be, his nature just won’t let him step into the realm of actual bad behaviour. He might try it on but I know he has to work really hard to cause actual grief and harm to someone. It’s just not a part of him.
…and then there is Nicholas…
A few days after I started this blog, I received a comment from Annie Love over at Mummalove. My pregnancy story reminded her strongly of her mental journey through a Down syndrome diagnosis. I checked out her blog and there was Nicholas…with that look. Our boys are the same age, the same blonde hair although Nicholas’ is a number of shades more brilliant blonde. The same blue eyes…the same look. I knew just by looking at his photo that Annie would be experiencing the same stop-start motion I did every time I went shopping, with people smiling and saying hi. I knew that Nicholas would be drawing the world in with one flash of that infectious smile. I knew that people would be loving him and wanting to be near to him without really knowing why.
I knew how Annie would feel as she accompanied her boy out into the world; as though you carry a flame at the end of your hands and the moths draw in one by one and jostle to be near to the light.
I don’t know if it’s the extra chromosome or not but I know a bright shiny light when I see one and Nicholas has it.
When Nicholas fell ill a few weeks ago, I couldn’t really wrap my head around it…so he will just spend a few days in hospital and then he will be home…right?
As the days moved in to weeks I tried to imagine his light dimmed and smothered by a rampaging infection. I just couldn’t believe it. Yet those dark clouds marched on, wrapped themselves tightly around that light and took it from the world.
Waking on the Monday to hear of his passing took the floor from under me. I sobbed freely.
“Oo ok mummy?”, came Wade’s sweet voice from beside me and I sobbed again. I tried to explain why I was crying and he reached out and squeezed my hands.
Some people have a light that spills from them. It bridges the gap between souls and lights a path that not everyone gets to see. It’s not necessarily a Down syndrome thing but I see it a lot in our community. I see an uncluttered unfiltered light reflected on the faces of those who are lucky enough to really see it.
Nicholas your light was so bright, it made your beautiful family shine. It shone beyond your home and out into the world warming the faces of those who followed the measured and calm words of your mum Annie.
It was so bright it lingers after you have gone and stays with us in the hearts and memories of those who held you dear.
In a world like this, we need more lights like yours. Not less. It’s not fair that you are gone but I am grateful you were here. I have some idea of how your mum felt having you in her life but no idea what it must be like without you.
My heart breaks for you Annie but you made a beautiful light for the world who will always be a part of you and your family.
All my love
This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.
I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.
Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.
I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,
A) it was absolutely hilarious.
B) it’s a story of what happens when competition, ego and status don’t influence relationships.
First a little bit of background.
My sister and I are an interesting pair. Basically we are the same person but we couldn’t be more different. What I mean is, at our core, we hold the same values, same ethics and same outlook on life but we have always been a bit opposite in how we ended up there.
Growing up we fought like cat and dog. Only 18 months apart in age I was never quite older enough to assert full dominance of my superior age all over her and we were fiercely competitive in every mundane aspect of our lives. Who got to sit in front seat of the car, who got to push the trolley, who did our parents love more….(yes, I actually asked them that once)
I was the one who found school work easy and didn’t have to try too hard to get good marks whereas Sammy found it more difficult. Yet, she was the one who had a million friends by lunchtime and I was still working out how to keep the two or three I’d had for years.
She was short, blonde haired, blue-eyed and adorable and I was tall, lanky, and well….I guess my neighbour summed it up when she said to us...”Sammy will always be pretty, but one day, you will be beautiful”.
(I spent many years wondering if that “one day” had arrived yet!)
We didn’t become friends until I moved out of home. As we moved into our separate lives as adults, married and became parents, we became incredibly close. Basically…we grew up…and now we understand who the other one is. I don’t talk to anyone like I talk to Sammy, both in a good way and a bad way! We still drive each other batshit crazy in the way we do things but deep down there is respect and an unbreakable bond.
She often gets the faltering voice on the end of the line saying “Have you got a minute to talk?” And I also answer the phone to hear “I just need to vent!” She is the one who tells me to get a grip when I’m losing rational thought and acting like a crazy person and I am the one who tells her that yes…on this particular occasion, I think you were wrong and you might need to suck it up.
My thoughts and emotions have been spiralling all over the place today. Today I read that an Australian couple chose to use a Thai surrogate to birth their baby conceived during IVF. The surrogate was actually carrying twins, a boy and a girl and four months into the pregnancy, it was discovered that the baby boy had Down syndrome. The Australian couple asked the surrogate to terminate the pregnancy but she refused. After the twins were born the couple took the girl home to Australia leaving the boy behind with the surrogate.
Compounding the whole situation is the fact that the baby has a congenital heart defect. Around half of all babies born with Down syndrome have a heart defect. It is quite common and, in Australia, it is quite easy to fix. The surgery, while major, is considered routine here with extremely good outcomes.
In Thailand however, this surrogate is unable to afford the operation. A vulnerable woman tempted by a dodgy surrogate agent to make some money to pay off debt, is now left with a child that is not hers, a child she had no plan to raise without the resources to provide for him. Without the operation, the baby will most likely die.
There are so many horrendous issues surrounding this story not least of which is the practice of using impoverished and exploited women to birth a baby on the cheap…
Telling the surrogate to abort the “unwanted” baby against her own religious and moral beliefs…
A dodgy surrogate agent refusing to pay the surrogate for the baby the couple didn’t take home…
The list of aspects to this story that breaks my heart goes on and on but the one part of this shitstorm that hits me the hardest is this…
A couple of weeks ago I asked the question whether posting my story online is useful to my readers or just mere entertainment. I asked it for a couple of reasons, not least being that I had seen another blogger do something similar and I thought it would be a really interesting exercise. I was curious to see what my readers are taking away with them and if the reality of their experience differs greatly from my expectation. I was particularly interested in inviting readers from outside the disability world to contribute and see if my story has an impact on those with little to no experience of Down syndrome.
I already suspected that publishing personal stories does have a positive impact on the people who read them (or else I wouldn’t publish mine!) but it was interesting to read why from other people’s perspective. I was thrilled to receive comments from a wide range of perspectives. You can read the comments at the bottom of the post here. https://embracingwade.wordpress.com/2014/06/24/is-my-story-just-a-story-or-is-it-useful/
A common thread that came through the responses was about finding stories that speak to us. A personal story can move us in a way that facts and figures just can’t.
We can read all the stats we like about improved quality of life and health outcomes for people with Down syndrome or how encouraging meaningful work options makes good economic sense for everyone but nothing gets a message across like reading about the reality of a situation through the eyes of someone who is living it. No matter how different our lives may feel, reading a personal story can make us find common ground we didn’t think existed but it can also help rationalise overwhelming thoughts when we read about others walking the same path as us. Continue reading
I was in the supermarket the other day and I saw a woman up ahead with a child in the trolley. The child was about 2yo and was crying.
“Look around…” the mother said, “… you’re the only one crying here…”
I am not judging this woman. I understand that there is often A LOT going on in the lives of others that bubbles up to the surface and comes out as frustration when someone is at the end of their tether….
….it’s just that I hear this kind of thing a lot.
It takes many shapes and forms;
“Behave!, everyone is looking at you”
“Don’t do that, you’re embarrassing me”
“Don’t wear that, it will make you look fat/skinny/daggy/whatever….”
“None of the other kids are being as naughty as you”
It always gets me thinking…. People are often terrified of what complete strangers think of them. It is so common for parents feel embarrassed by their kid’s behaviour in public or use the spectre of public humiliation to encourage better behaviour from their kids. Whenever I hear something like this, I find myself asking the question…. Continue reading
Anzac Day is getting harder for me as every year passes. I am standing by helpless as one of the most admirable, dignified and courageous people I have ever known sails quietly towards the end of his days. The final years of a life is a time for reflection and over the last 4 years, since my pop suffered a massive stroke, I have had plenty of opportunity to think about his life.
The Anzac Spirit was forged on the battlefields of WW1. It was the reputation the Anzacs had for loyalty, mateship and skill on the battlefield but it was also mixed with cheekiness, mischief, and good humour. The generation that fought in WW1 have all passed and the generation that fought in WW2 is passing too. As the last of the WW2 diggers age and die, I wonder if the Anzac Spirit still has a place in today’s society. A society that feels a world away from the one my grandparents grew up in.
My pop, Jack Wade, was a commando, a “digger”, a scrappy nugget of a man with a cheeky sense of humour and the respect of everyone he ever met. He was the embodiment of the Anzac Spirit. He fought in WW2 in New Guinea in the 2nd/3rd Commando Squadron in the Australian Army. All the men volunteered to join knowing they might not come home, because that’s what you did back then.
We weren’t told a lot about this time or what it was like when he returned home, as it wasn’t discussed much. Continue reading
Sometimes I get to the end of the day and realise the day has been full of tiny moments when my heart has nearly stopped at how adorable Wade is. Moments when I have to try and remember if I ever really knew how to feel anything before he came along. Moments when I stop and think….we made him. He wasn’t here before and now he is. Moments I’m sure every parent feels when they watch their child develop personality traits uniquely their own. Traits that we didn’t teach him, they just came from within him. So this is a shameless, self-indulgent, cheesy, gooey list of things that make me go squee about Wade….just because.
1. The Public Squirm Test
Going out in public with Wade is something that I have to allow extra time for. Mostly because I am stopped several times a day to discuss at length the deep level of cuteness this kid emanates but often it is because Wade will make a beeline for someone and single them out as “The Greatest Living Person on the Planet…for Now”. Wearing a hat or glasses will increase your chances but often he just spots someone that he decides is awesome and will go and meet them. Buskers need a strong sense of self too as Wade will walk right up to them and stand at their feet, staring up into their eyes as they perform. I get such a kick out of watching said person work out what to do or say when they look down and notice Wade peering up at them. I’ve written before about the peace that surrounds him. He is comfortable in his own skin. He is neither shy nor confident…he just is. He will just stand there and absorb them. A lot of people have no idea what to with that. After the obligatory, “Hey there little guy, aren’t you cute” there is usually a wordless conversation of smiles and waves before it starts to get weird for the poor person. I like to leave it just that little bit too long before I head over to give them back their personal space! Adorable.