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.

 

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Sharing pregnancy stories when your child has Down syndrome…

I loved being pregnant. Well not the whole time, I mean the “being told your child may have Down syndrome” thing was pretty full on and there was the heat…oh god!…the heat in the final weeks was torture.
Oh yeah, and the swollen legs and the extreme coughing at the smell of washing powder and toothpaste….now that I think of it, the tiredness was pretty real. The bone-crushing, soul-sapping fatigue that comes from growing one human inside another human was tough…

….but other then THAT, I absolutely loved being pregnant. I loved feeling myself transform from not-a-mother to mother day by day.

I loved feeling my baby for the first time. At one of my regular check ups at the clinic I asked the nurse to check a weird lump I could feel in my abdomen and, when she told me it was the baby, it blew my mind. I loved that I could talk to my baby, play him the piano and sing to him knowing that he could feel me and hear me.

I loved feeling the first flutter of movement then feel the movements grow stronger and more insistent as he too grew stronger. I loved that he preferred to lie on one side and his heel would stick out just below my ribs and I could rub it every day. After he was born I would rub the same heel remembering that he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.

Baby Wade

Baby Wade

I loved that my body told me instinctively what to do and how I learned not to question what it was telling me. I loved that I learned to ignore so much of the over-the-top, unnecessary overkill that pregnant women come across when mindlessly surfing the Internet.

I loved that after all the stress and the worry and the uncertainty about what Down syndrome would mean for my unborn child, I laboured and birthed him exactly how my body told me to, exactly as I hoped it would be. I held in my arms a perfectly made, contently happy and healthy baby who needed no intervention, no medicalisation, nothing extra from me or the doctors. I loved feeling the surge of happy hormones flood my body when I looked into his eyes for the first time and we fell hopelessly in love with each other in that moment.
Yes, he had Down syndrome but he was healthy and perfect and loved.

As Wade is my only child, his is the only pregnancy I have known. I love talking about it and joining in when others share their pregnancy or birth stories. I love the kinship of motherhood that crosses the divide between women.

I love it when you are standing in a group at a party and someone announces they are pregnant for the first time. When the room erupts in kisses and hugs of celebration, I remember the giddy, deer-in-the-headlights feeling I had when I found out I was pregnant. As soon as the announcement is made the room will split like the Red Sea as the other dads in the room will burst forth to shake the new dad-to-be’s hand. They will shake their heads with jokes about how life is about to change in ways they never dreamed possible. Then the mothers in the room will surround the new mum-to-be and start asking all the requisite questions about the pregnancy so far. Stories start flowing about their own pregnancies and what to avoid and what to be on the look out for.

…and then there’s me.

Me…
knowing full well that my pregnancy and birth was amazing…
knowing full well that nothing I did prior to or after conceiving Wade caused him to have Down syndrome..
Knowing that I wouldn’t change a thing about Wade…
…and knowing full well that not everyone knows that.

Knowing that I am the one in the room silently reminding the new mother that sometimes not everything they plan for goes to plan. When everyone starts reassuring a worried new mum about the upcoming scans and tests saying that everything will be fine, I can feel the unspoken exception of me and my scans and tests….

When a newly pregnant mother worries about eating eggs or having the odd sip of wine and I announce “I ate eggs right through my pregnancy and Wade is fine”…I can feel them hesitate with no idea how to respond to that. Ok, I might...kind of…do it on purpose because my sense of humour is a bit warped but sometimes I just like to check how much people understand about why Wade is the way he is.

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Down syndrome is a random thing that happens at conception. All the pregnancy advice in the world won’t change that. Yes, it is more likely to occur in older women but most babies with Down syndrome are born to women under the age of 35….because most babies are born to women under 35!

I know that eating eggs did not cause Wade to have Down syndrome. I know that Wade is healthy and smart and funny but I also know how weird it must look to a new mother when I start giving out pregnancy advice.

I am genuinely proud of Wade. I absolutely love showing him off because he is hands-down the coolest person I have ever met. Unfortunately I still find myself hesitating to share my joys sometimes because I know that people don’t see things the same way I do. Occasionally I will see a little boy with a familiar style of blonde hair or the same quiet calmness as Wade and I will feel the urge to tell his parents how alike our kids are. But I know the look I am going to get when I do that….As though I am saying, “your child looks/acts/behaves like he has Down syndrome”.

As though that is something bad…or an insult.
As though that is all there is to my son.

This is the pervasive nature of disability unfortunately. It would not be automatic for that parent to see that I am talking about my son’s qualities and features, his blonde hair, blue eyes or cheeky sense of humour instead of his diagnosis. It wouldn’t be automatic for them to presume that I am just as proud of my child as they are of theirs. That when they look at their kid’s perfect button nose or smile goofily as their child jumps up and down in a puddle or turns on the charm offensive in a cafe, I am thinking the same thing about Wade.

It’s a shame that the automatic reaction to disability is a negative one. Yes, my pregnancy didn’t go to “plan” and yes, receiving those test results were some of the hardest days I have endured, but they were hard because I used to live in a world without Down syndrome too. I knew nothing about it except what I was told to believe. I didn’t know how much has changed about Down syndrome. I didn’t know how capable he would be or how interesting it would be being his mum. I had no idea how much I would learn and change as a person.

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It’s a weird feeling when pregnant women tell me how happy they are that their scans have come back with no issues. Don’t get me wrong, I am happy for them! Every new parent wants to hear that their baby is healthy, but it is impossible for me to hear anything other than how happy they are that their baby is not “like mine”. I have spent a long time thinking about what that means. It would be unrealistic of me to presume that parents-to-be would sit waiting for their test results with fingers crossed, hoping the baby has Down syndrome. I understand that when your little train of expectation jumps the tracks and ends up on a line you had no intention of travelling, it can come with a jolt and a shock. But when I look at my little guy now, then think about myself doubled over with grief and shock on the floor when I was told he would have Down syndrome, I can’t match the two up anymore.

I know it’s hard for people to understand that I’m not devastated about Wade having Down syndrome. I’m not feverishly making lemonade through gritted teeth because I was handed a giant basket of lemons. I am genuinely happy and wish I didn’t have to doubt myself when I talk about it with others.

For me, Down syndrome just is. 4 years down the track I have realised it is a thing that makes him different and a thing that has changed me and my world. But really, it’s just a thing. Sometimes a harder thing…sometimes not.

It’s a thing I will share about my pregnancy because it’s a huge part of my story. It’s a thing I will talk about when I remember him as a baby or I think about him entering school, or plan for his future. It’s a thing that will cause me to lay awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others….just as all parents worry or gush over their children at different times.

It’s a thing that tells me everything and nothing about Wade at the same time.

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Learning to be resourceful….and brave.

I’m not into New Years resolutions but this year I decided to make one. Not so much a quit this or start that type…more of a quiet mantra that I will return to as the year goes on. This year I want to be resourceful and brave. Because this year I will need to be. There’s a reason I haven’t written for months and I guess I just didn’t know where to start. You see, Mick and I have decided to separate.

It’s mutual, amicable and will be for the best in the long run but here’s the thing…it’s not particularly something that I want to write about because it’s personal and private but it will change how I do everything from now on….including my writing, my parenting and my ability to support myself and Wade. So even though it’s private, it’s kind of relevant to this blog and I’ve been at a loss to work out how to write from now on and still keep some of me for me if you know what I mean. I will answer the obvious question though….it’s not because Wade has Down syndrome. If anything, I think that is helping us stay good to each other during this process.

So, while the details of why we are separating are irrelevant here, I think the range of emotions and feelings I have been experiencing as I go through it reminds me of the feelings I was going through when I was pregnant with Wade. The similarities are so strong that it has given me a new perspective and a new understanding of what it means to face challenges and how useful sad and overwhelming emotions can actually be. Continue reading

For who Wade was named…

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.

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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

Happy Birthday little Blog!

A year ago this week, I started something I never believed I was capable of doing. I started compiling all my thoughts about my pregnancy, birth and first year with Wade and I started blogging. My aim was to speak to other families who may be in a similar position to us and tell them everything. I wanted to show that something can rip your world apart and make you question everything you know and still be positive and joyous. That in the midst of swirling, competing emotions, a path emerges and while it may not be the path you intended to take, there’s no reason why you can’t plant a few bluebells and enjoy the walk.

It was important to me that I didn’t just end up preaching to the choir about Down syndrome too. I wanted to speak to people who had no experience of Down syndrome and show them that life is not like they imagine it is from the outdated stereotypes they may be familiar with. I wanted to throw the door open on my world so that no one had to creep around the issue or feel uncomfortable about talking about Down syndrome. I wanted people to think about and forget about Down syndrome at the same time when they thought of us.

Wade "on the phone"

Wade “on the phone”


I remember the week I launched the blog. I had decided to write my whole pregnancy story in 6 parts and publish them together before telling anyone about it. Two days after posting the first few posts, I received my first comment…. from a complete stranger on the other side of the world before anyone knew I was even writing this thing! It blew my mind that in the endless sea of blog posts on the Internet, someone had stumbled across little old me! Continue reading

A huntsman spider freak-out!

I don’t have a fear of spiders. I don’t like them, but I’m not phobic. I don’t want them to touch me and I will do that crazy “just fallen into a bag of bees” dance if one does but I am reasonably comfortable if one just happens to be on the wall or whatever. Living in Australia comes with that quiet understanding that there are things that can kill you everywhere. As aussies we know that “They are more scared of us than we are of them”. Most things that can kill you are more than happy to stay as far away from you as possible.

The huntsman spider on the other hand is a completely different animal. They are not deadly, I’ve never met anyone who has even been bitten by one but I hate them. Usually fear and loathing comes from a lack of knowledge and understanding. With a huntsman however, it’s the things I know about them that makes me hate them even more. Continue reading

My Father Christmas

I want to tell you about my dad and Christmas. When we were little, the first sign of Christmas in our house was when dad would pack my sister and I into the car and drive down to the Christmas tree farm to pick out our tree. We ALWAYS had a real tree the smell of fresh pine still makes me think of these times. It was so exciting! We’d wander around inspecting each tree and dad would say, “We will know the right one when we see it”. He said it will have a certain glow about it and we will know that it’s ours. Round and around we wandered, nominating a tree here and there, until all 3 of us would stand in front of one glorious specimen, nodding in agreement that this was definitely The One. Of course The One would always be just a little bit too big or a little bit too expensive but dad would buy it anyway and the next Christmas tradition was watching dad explain to mum how he managed to come home with such a giant tree….AGAIN! But we loved it…and I suspect mum did too which is probably why she never came with us, lest she rain on our tree-picking parade.

As soon as we got home, the badgering would start about when can we Decorate the Tree???!! The tradition of “Decorating the Tree” could only come after the tradition of “Finding All the Decorations Which Have Somehow Moved From Where We Put Them Last Year” then the “Untangle and Work Out Which Bulb Has Blown in the Christmas Lights” tradition and there was often the “Festive Dummy-Spit” over one or more of the above traditions too!

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But once the tree was in the pot, and the lights were on….then it could begin!!! Continue reading

Writing and working…(and worrying unnecessarily)

It’s been a month or so since I last wrote here, and what a month it has been. I started writing here 6months ago for two reasons.

One….to write.

I have always wanted to write, but never had anything to say. In the past, my writing read exactly like you would expect from someone who sat down with a clean white writing journal, freshly bought “writing pen”, probably a glass of wine or cup of coffee, perfectly positioned ashtray and pack of rollies (as was my want back in the day….).

All the gear but no idea.

I would set myself up to write aaaand……nothing……just contrived, scripted crap that was painful to read back. Now I can write because have something to say, something I actually want to share. Something I believe in and believe that it needs to be shared. I write to answer the secret questions people have about my life but never feel comfortable to ask. I write to demystify, to normalise, to make it ok to talk to me about this stuff because it just is what it is…. I write to make sure Wade lives in a more understanding and compassionate world because people know more about what Down syndrome is.

The second reason I write, is to help others who are starting on a similar path to us.

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My Mother’s Hands

I was watching a mother hold her son on her lap the other day and I noticed her hands. She had her hands around his torso as she held him on her lap. It was casual and unexceptional. Just a mum holding her son on her lap.

Yet the sight of her hands doing this simple action brought up feelings from my own childhood. The memory of my mother’s hands when I was a child. When I was young, I remember looking at mum’s hands and thinking how beautiful and grown-up they looked. Long slender fingers with defined knuckles and I remember seeing the veins raised on the back of them. I remember how beautiful her wedding and engagement rings made her hand look. While I can recall how her hands looked to me as a child, I actually remember the feeling I felt more.

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Safe and secure.
Belonging and Loved.
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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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