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….

 
IMG_5909

 
…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…

 

904659_549089298496494_2037164776_o

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.

 

Advertisements

19 thoughts on “For Nicholas Love

  1. What beautiful words Leticia thank you for expressing what I feel as I couldn’t describe that feeling. You just wrote exactly why I cry as soon as I see a picture of Nicholas. I am heartbroken, yet never had the pleasure of meeting him. I too have a blonde haired sparkly blue eyed boy. He looks at me to my very core. Pure joy is the feeling of being in his presence. I am heartbroken for Annie and her family. X

  2. You captured this rate ray of sunshine beautifully. I can just imagine that he’s there looking down at us with that cheeky grin. Beautiful angel!

  3. So beautifully, perfectly, eloquently put. Thanks to you and to Annie for sharing your boys with us. I am so devastated by Nicholas’ passing – it feels as though we became part of his world and his extended family. His light shines on 😘

  4. I adore this writing. It is so difficult to put into words, that “uncluttered, unfiltered light,” but you did it. Crying in my office for Nicholas and his family.

  5. Beautifully written and so true. I myself have a little bright light in my life that makes my heart sing everyday! I’m heart broken for the Love family and wish that I’d been able to just make it to one music therapy session or one play group get together so I could’ve met Nicholas. He was a captivating little soul and will be desperately missed…it is so unfair. 😢

  6. So beautiful and you described it perfectly. I am also a mommy of a special boy (T-21) , and when I heard about Nicholas, my heart broke. I see so much light in him! I am so happy I cross paths with this ray of sunshine. I am happy our paths have crossed Annie and Leticia! 😀 😘 My heart goes out to you Annie. Your sweet Nicholas has definitely captured mine.

    Love and prayers

  7. What beautiful words. My heart breaks for Annie’s loss.
    I have a, now adult, sister who has late-diagnosed congenital hypothyroidism. She is intellectually challenged along with many other disabilities.
    But, she lives a simple, truly happy life-with no judgements, unequivocal acceptance and love for everyone.
    While the rest of us more able people work so hard to have so much, become impatient and intolerant, institute and are recipients of road rage and more.
    The world needs to sit back and take a page out of these special people’s lives. By doing less, we can do more. Just. Simply. Being. Present. Our world seems to value things over love. Value planning, over the present. Too many regrets and wishes. We need to live in the now and be grateful and accepting of what we have.
    And thank you to all the special people for keeping us on track

  8. Pingback: The half-truth of the happiness stereotype for my son with Down syndrome | Embracing Wade

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s