In this blog and all of my writings about Down syndrome, I have referred to the condition as ‘Down syndrome’, but the more accurate term is Trisomy 21…3 copies (Tri-)…of chromosome (-somy)…21. In the online community a lot of parents … Continue reading
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
Sometimes Wade is given gifts. Mostly it is for a reason like birthdays and Christmas but occasionally we will receive a ‘Just Because’ gift. ‘Just Because’ gifts are generally lovely because I know that the person giving it to us … Continue reading
Wade wore these boots to kinder the other day. These boots are hand-me-downs from his cousin. Just like tops and pants and other things. They are pink.They are not embroidered with unicorns frolicking in meadows of daisies and fairies. They … 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
Stereotypes exist for a reason I guess. They come from a collection of commonly seen characteristics attributed to one type of person. Sometimes they are damaging and hurtful and sometimes they are harmless. I don’t particularly like them because they … 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
March 21 is world Down syndrome day. A day when our community comes together to celebrate the lives and achievements of people with Down syndrome. A day to raise awareness and educate the rest of the world about what it looks like to live with Down syndrome today
It’s also my mums birthday… and Wade and I did nothing special.
We did something helpful and helped nanna open her presents.
We did something cheeky and cancelled all our plans so we could all spend a much needed family day together with my sister Sammy and her family in her amazing garden.
We did something chatty and played games and told stories in the back seat of the car on our way to Aunty Sammy’s house.
I did something different as I took a call from the Inclusion Support Manager of our local council to help us get information about the local kinders in the area that I am considering moving Wade to next year.
Sammy and I did something scary as we raced to the doctor with a child suffering a quick and immediate allergic reaction to an ant bite…it was Cohen by the way and he was fine after a dose of antihistamine!
Wade did something snuggly as he tucked into my jumper for more cuddles and a snooze after I woke him up from his nap; curled up like a baby making me think fondly of those days when he was small and tiny and new.
I did something frustrating as I tried to get anything that passes as food into Wade for lunch. Getting this kid to eat anything other than breakfast and dinner is impossible!!
I nearly stopped breathing out of joy as I watched Wade throw his toy away and sprint to the window when Uncle Bushy arrived home.
Uncle Bushy did something exciting and showed Wade how to gather up the chickens and put them away to bed.
Emily did something cute as she and Wade watered the little plants on the balcony with squeezy water bottles.
Wade did something disgusting and inhaled an enormous bowl of spaghetti at the fancy restaurant we had dinner at. There was more spaghetti squashed into the seams of his trousers and smeared on his face than down his gullet and I’ve never seen a happier kid.
Wade and grandad did something sweet and fell asleep together holding hands in the back seat of the car on the way home.
…but we did nothing special.
Our lives are ordinary.
Some days are fun and joyous like today, sometimes they are busy and overwhelming.
Some days look a bit different.
But they are not special.
Happy World Down syndrome Day and I hope your day was as ordinary as ours.
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.
Sometimes when you start out teaching your kids how to do things, you have no idea whether your approach will work or not. That worry can be amplified when your kid has developmental delay as the fruits of your labour can take a long time to ripen. Trying to balance sticking to a method to provide consistency and ditching something that doesn’t work before I have wasted too much time on it used to drive me crazy but as time passes, I am getting better at knowing what works for us and what doesn’t.
So, I thought I would write a little bit about things that have worked for us and why.
I thought I would start with road safety because this was one of the biggest fears I had early on. Like most parents starting this journey I’ve had so many people delight in giving me all the horror stories of uncontrollable kids or near death experiences as their kids belt out into oncoming traffic. This terrified me. What if I was never able to teach him to be safe near a road? What if he wrestled out of my grip suddenly one day and threw himself under a truck?
I decided early on that I would try to teach him some road sense in the hope that he would learn to walk with me safely and listen to my instructions…and I decided to start from the moment he could walk. Partly because the earlier I started the better, but also because he would be pretty slow and I could catch him easily if I had to!
So here is a list of things I did that have actually worked.