For Nicholas Love

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….

 
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…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…

 

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Photo from mumma-love.com

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

Leticia

Click here for the beautiful tribute to Nicholas’ life.

 

A Shameless List of Adorable Things

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.

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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.
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A walk with Wade

I’ve had a lot on my mind lately. Some of it good, some of not so much. Some of it real and a lot of it less so. It’s that time again when the wheels fall off a bit but for now I’m just parked safely on the side of a quiet road instead of hurtling down a hill towards a swamp so it’s ok.

It was Wade’s birthday this week. 2 years old! Partly because I wanted to and partly because my annoying brain has been running riot this week, I didn’t plan anything for the day. I did have a party planned for the weekend but with temperatures forecast to be 40C, we cancelled it. Too hot. Too everything… We did a couple of small catch ups with family and friends instead which was nice.

I woke up the morning of his birthday with that strange mix of wanting to do something amazing for our beautiful child and feeling relieved that he is two and won’t know whether I did anything or not.

So I decided to take him for a walk. Not the walk I usually do, which is pop him in the pram and walk up the main road to the local cafe and enjoy myself immensely as I convince myself he is getting the thrill of all thrills playing with the grass on the lawn out the front. No, we went for a proper walk. We live at the bottom of a mountain which is one of the most beautiful places in Melbourne and yet I rarely see enough of it. That day, we drove up to the forest and spent half an hour walking 100 meters. It was beautiful. The eucalyptus trees that form the forest are very tall and very beautiful. Standing underneath them as they leap impossibly high on the slenderest of trunks is spectacular.

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Wade started walking a few months ago and is the physical embodiment of the word “toddler”. Continue reading

In the blink of an eye

This happened a week ago but I wanted to wait before publishing. I always prefer the tone of a piece written at the time so I am going to leave it in the present tense.

I nearly ran over a toddler today. It was one of those moments that you play over and over in your mind. So much happened in a single second and the more I think about it, the more I realise how removed and separate I was from it all. Thinking about it with hindsight, I wonder how much of what happened was dumb luck, or a little bit of everything I ever learned about anything leaping forward from my sub-conscious to save this tiny little dot.

I was driving along a 4 lane road in an area that usually has some pretty dodgy drivers around. I drive this road a lot and have had to share it with some diabolical road users in my time so I usually keep some idea of where other cars are around me. Up ahead I saw a police car that had pulled over a driver on the other side of the road. The lights were flashing and whenever I see this, I try not not see it. From my time in the police force, I know that one of the worst places on the road for a bingle is right next to a police car with its lights flashing because everyone rubber-necks! They slow down and turn their heads to see what all the excitement is about and often it ends up in a rear-ender. I drew level with the police car and then….

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Frames for baby blue.

There is something magical about Wade’s eyes. From the moment he fixed his eyes onto mine, on the day he was born, I have been drowning in those pools of wisdom. He says more with his eyes than he can with gestures and speech. Without a doubt, I love those crystal blue eyes more than anything so I was very worried when at about 9 months old, I noticed that his eyes weren’t tracking together. It would only happen for a second or two but it was there. Luckily Wade’s uncle and aunt who are both optometrists were staying with us not long after it started happening and recommended that we see an ophthalmologist.

We booked in and the ophthalmologist examined his eyes through this binocular type device and identified that he is very long sighted. She explained that when the eyes look long distance they should be at rest but if you are long sighted, they struggle to focus causing eye strain and fatigue which can cause one eye to drop inwards. This is known as Accommodative Esotropia and is quite common with people with Down Syndrome due to the low muscle tone. Low muscle tone is best described as the muscles having to work harder than normal to achieve the same outcome. Like walking in water or walking uphill. It is not the same as muscle strength. Therefore, if you are long sighted and your eye muscles are straining to focus, they work even harder if you have low tone which causes the weaker eye to give up and eventually it can drop inwards permanently if left untreated. This can mean eye surgery or permanent vision impairment. Continue reading