There are some unexpected perks being the parent of a child with Down Syndrome. The journey has its bumps along the way but it is full of surprises, life perspective and often unexpected laughter and joy. We have learned more about life and love in the last 6 years then in all the years preceding them. How to enjoy the simple stuff, relish the highs, overcome the lows and we laugh, we laugh louder and more heartily then ever before!
But a surprise to us was the amazing community we found ourselves in. A community of parents from varying backgrounds, age groups, cultures and beliefs but with a shared life experience. Shared fears and learnings, a rare understanding of each other, a place to share and be yourself without judgement. This community is there for each other no matter what obstacle may arise. An exclusive club you had no idea you really wanted to be in!
This week I saw a side to that community that I would love the world to see. At a time in Ireland where the media is filled with healthcare scandals and the sometimes vicious Referendum debate, we are feeling vulnerable. Our community has been shaken as children and adults with Down Syndrome have found themselves tangled up in an 8th amendment debate to allow for abortion legislation in Ireland. Our children have been wrapped up in media debates, featured on billboards in posters and on campaign pamphlets. No matter what side of the debate you find yourself on, we are all feeling exposed, sensitive and raw.
So this week I sat at my kitchen table for a cuppa and noticed a post in our community. A forum for sharing with other parents of children and adults with Down Syndrome. A mum posted a beautiful picture of her daughter with the simple caption “Just because….”. Her note was that she wanted to share something lovely, to give us all a break from the Referendum and the picture was her gorgeous smiling little girl. The response was incredible. Hundreds of “Just because…” photos and captions from families all over Ireland followed. Photos filled with smiling faces, adventures, achievements, laughter, strength, resilience and a bond of love that makes me so proud to be part of this amazing group. Every message was sincere, every photo filled with warmth and every child loved unconditionally.
The fact is that anybody looking in would question their own perceptions of raising a child with Down Syndrome. If I had seen anything like this after Noah was born, I would have saved my tears and looked forward to being part of this amazing community of support and love. I would have realised immediately how much I was going to love my little boy, that life was not going to change forever in the way I thought it would, that the sun will continue to shine, I will continue to laugh and that family will not only continue to be, but with a strength of spirit, unity and determination.
We live in a world today where our voices can be heard. Social media gives us tools to get out there, share our stories and influence perceptions. The hard part is that people will believe that what they read from parents is the positive view we want you to see. You might believe when reading my stories that I only portray the good stuff, that I have a motive to drive a particular point of view. No matter how many wonderful family stories, journey’s of love and adventure that are shared with the world, the perception continues that having a child with Down Syndrome is not a choice people want to make.
So how do you explain “Just because..”? How do you explain the viral stream of love, laughter, positivity and joy in a closed forum for parents who are already on this journey? There is no motive, no agenda and nobody to impress. We are all on our own version of the same adventure.
Is it possible that we are just right? We are telling the truth? Maybe, just maybe it is as we tell it, a club that will change your life for the better, you just don’t know it yet!