Down Syndrome

Inside Door 21

Inside Door 21.jpg

Sometimes in life you take a chance and walk through the door at the end of a route you wouldn’t usually take. When it closes behind you, you realise it’s leading you to a place that you weren’t expecting, one that you’d never even dreamed of before…. a place in which, once there, your life will never be the same again.

They say ‘when one door closes another door opens’ but in some cases the hunt for that other door is never ending and that middle ground of unknown is fresh, fierce and full of crazy circumstance.

I walked through door 21 when I was 16 and I never looked back but realising that there wasn’t a door to open on the other side just many paths to walk down instead, was the scariest but most important lesson I ever learnt.

Some doors just open and shut behind you so that you can start a never ending journey in life, door 21 is one of those doors.

Life is a funny old game though and it really can throw you under a dark cloud on a sunny day, being pregnant at fifteen was definitely unexpected, what was to follow, that was a little bit more… well… off the wall.

Some babies are born special…

After a blissful pregnancy and perfect scans, at 16, scared and completely unprepared mentally and physically, I gave birth to a 9lb bouncing baby boy..

He was beautiful, slightly bigger than I was expecting and with the biggest hamster cheeks I’d ever seen on a newborn but he really was perfect, I was instantly in love.

Twenty four hours later, I was called into the doctor’s office, with a weird feeling of dread in my stomach oddly knowing something had to be wrong, I sat down and took a deep breath. Then he spoke those words. The ones I’ll never forget.

‘Some babies are a little bit more special than others… some babies have Down Syndrome’

He stuttered and struggled to tell this fragile new sixteen year old mum that her world had just been turned upside down and that she had just walked through a door in which isn’t usually seen to be entered by one so young, but the path behind it was one so many had walked down before. He struggled to get his words out. He struggled to break my heart.

My New Life…

Door 21 had just closed itself behind me and locked me out of my old world, throwing me into this brand new land of the unknown.

It was dark.

It was scary.

It was my new life.

The following years are a blurred memory of wrong turns and hospital stays but the journey was harder for me than my beautiful new creation it would seem, he just took it in his stride, fighting every battle with a smile.

With me failing to realise that by opening this door and not being able to run back through it with my hands in the air screaming, that it would lead to more than just being a mum, I battled both depression and motherhood behind a fake smile and practical parenting. Failing dramatically at a lot of things along the way, I muddled through and made Down Syndrome, and all that came with it, ‘the norm’ in our life.

He had his fair share of ‘the norm’ throughout his early years too, well ‘the norm’ for a child with Down Syndrome that is. He struggled with several medical issues that come with that extra chromosome, yet nothing as serious or dramatically life threatening, as I had first thought it would lead to when the news broke.

To find a rainbow there must first be rain...

When you read about children with Down Syndrome, you read about either the butterflies and rainbows of how amazing they are or the darker clouds that appear just before those rainbows grace us with their presence.

Those black clouds can represent the vast amount of medical issues that seem to ride alongside that extra chromosome 21. The heart issues. The mobility problems. The thousands of little things that go hand in hand with that tiny little thing that sets them aside from people who don’t have it.

He didn’t have any of the heart issues. He hasn’t developed any life limiting illnesses that are what scared me so much at the beginning.

He was just him and I was just me and WE were just we.

Life for us changed the day I realised that far in the distance of this dark and scary new world I now lived in, was a perfect blue sky filled with butterflies and a beautiful rainbow but that to get to it I had to make my way through the brambles and rain and even when I got there it would just be leading me to new and adventurous paths to walk down, a new rainbow in the distance as such.

Following the butterflies…

The day I walked down the path towards the rainbow in the distance, hand in hand with my little creation, chasing the butterflies as they flew along the blue sky. I turned and looked back at the long and winding path and that door with the little number 21 on it seemed to be so far away now, hidden under that black cloud of the past. I gave it a little smile, after all it had taught me so much. That smile seemed to make the door and the black cloud above it, fade further into the distance and as I turned and glanced back, it had gone. The old life that I knew had led to the life I have yet to lead and I’m still on that path and learning every day. It still brings with it the odd black cloud and the odd shower but with the experiences of the path now behind me and the door I walked through all that time ago, it makes them much easier to deal with, like we’re holding an umbrella and a map as we walk.

That rainbow ahead makes for a much better view along the path as you walk too. It makes it a journey that I’m now excited to be on. A journey with no guaranteed path but with guaranteed great company.

There has been no map as to how to get to the rainbow on this parenting journey, nor has there been a clear view of what is ahead, whether it be dark clouds or butterflies. There is however, a wealth of information out there for those who are walking that path behind me and thanks to the journeys of others and the internet at our fingertips, many get to skip along their paths hand in hand from the very beginning.

The Future of Downs...

Future of Downs is an online support network made up of parents and run by parents. It has been the lifeline, getting so many down their path with a helping hand when needed and it has been a pleasure to watch and be involved with where I can. In the very short time it has been around, I’ve seen the lives of so many change for the better and the smiles of so many light the way for the future.

It has parents of all ages with children of all ages offering advice and knowledge about a subject we all have had a life crash course in. You see Down Syndrome has no specific journey route. It has no specific starting point or finish line either. It does however have a very specific extra chromosome which does make for a little extra work along the way.

Life has a funny way of creating dark clouds on what seems like a sunny day, especially when you walk through a new door… don’t let that cloud make the decisions for you, because if you just look behind it, you’ll find your rainbow.