March 21 is World Down Syndrome Day and, like over 2 million people and counting, I had the pleasure of seeing the beautiful “Dear Future Mom” video released to celebrate the day. It made me bawl like a baby to see the pride and unmistakable joy that exists between mother and child.
I love this video for its simple message to future mums. To celebrate this day, I have a message for future parents too. Mine is about embracing possibility and making the most of a situation but unlike the succinct brevity that was employed by the video, I have continued in my “why use 5 words when 50 will do” fashion!
From the moment a woman finds out that she is pregnant, that baby in the belly holds the promise of infinite possibilities. They are “perfect” because they could be or do anything. There is no reason to think that this baby couldn’t find the cure for cancer or be leader of the free world.
Once the baby is born and begins its journey down the road of life, slowly but surely certain paths and options become unavailable to this child. Interests and talents develop, choices are made and limitations are exposed. I know this happens because there are not 6 billion Nobel Peace prize winners on the planet who never get sick, have perfect, glorious families, who volunteer to worthy community causes in their spare time, become concert pianists, leaders of their country and dabble in a little bit of brain surgery on the weekends.
Slowly but surely, the infinite hopes and dreams the parents held for their child are refined down to “who they are”. That sounds bad but it’s not meant to be. It’s just a fact. People don’t end up doing everything in life. Some do more than others, sure. Some are happier than others, some need more help and some have more “success” than others, absolutely. (Success is such a relative term. One persons idea of heaven is another persons living nightmare but you know what I mean.) Ultimately that gleaming, shiny promise of infinite possibility gradually becomes the reality of what a person will become, complete with traits, skills and flaws…you know…. human.
We all know this happens but when that baby is born, we gaze lovingly into its eyes and tell ourselves that this baby is perfect and will be for ever.
Usually, when a woman is pregnant with a child with Down syndrome, the complete opposite occurs unfortunately. The moment the diagnosis is delivered that bubble of perfection bursts and families are left trying to imagine what will become of this child. Automatically, the assumption is that this disability will limit this child. The list of possible medical and intellectual consequences is recited ad nauseum by medical professionals and the hopes and dreams of perfection are shattered in that moment. Most parents go through a kind of grieving when the diagnosis is delivered. I certainly did. I read all the literature about increased risk of this and greater chance of that. I read all about the difficulties ahead of me with schooling and relationships and communication. After a diagnosis, many parents feel as though they are presented with a list of infinite impossibilities. The promise of imperfection.
It wasn’t until I met Wade and got to know him that I started to realise that there was a whole raft of qualities and aspects to him that I didn’t expect. I discovered that not everything (hardly anything!) on the long list of doom and gloom applied to us and I realised that life wasn’t quite as hard as I expected it to be. Yes, we are lucky that he was very healthy. I’m not going to presume to know what parents of sick kids go through but I imagine it’s really hard. The thing is, kids without Down syndrome get sick too. There is no medical or cognitive complication that can occur in kids with Down syndrome that doesn’t occur in the wider population and yet, the sad thing is, we parents seem forced to start from such a negative point in our journey with our kids.
We miss out on that moment of infinite possibility.
We have to build our expectations up after the diagnosis while other parents have to knock theirs down a peg or two! (Especially when their “perfect angel” is throwing a tantrum of biblical proportions in the canned fish aisle).
It doesn’t have to be this way.
The promise of the perfect number of chromosomes does not guarantee a perfect life and the presence of an extra chromosome does not guarantee a difficult one. I like to think of a diagnosis of Down syndrome as a “Heads Up”. The moment people choose to have kids, they sign up for an endless list of possible challenges but parents of kids with Down syndrome have an advantage….
We set out from day one knowing that our kids might struggle with learning new skills or have health problems. We are ready for it and we should be able to feel empowered by that not defeated. We have the advantage of being aware of what might be over the horizon for them. When our kids face challenges we know why and can ask for help from people who understand.
As parents, our kids will all delight us and challenge us at some point whether they have a disability or not. We will all learn things we didn’t know before we had them. We will all laugh and cry and tear our hair out. We will all jump for joy or spend the whole night staring at the ceiling with worry about our kids future because Parenting. Is. Hard. It makes you feel things you never felt before and while the euphoria of the extreme love and happiness is amazing, the gut wrenching fear and panic is there too and every parent feels it.
So, on this World Down Syndrome Day my message to parents who have just been told their baby or unborn baby has Down syndrome is this….
Take the best of both worlds.
Give yourself permission to presume your kids are perfect too. Reclaim the promise of possibility. Give them every opportunity and dare to have all the hopes and dreams and high expectations you would have had anyway… then set out to achieve them.
Then also take the “Heads Up” at the difficulties that might come and use it to your advantage. Use it to get on to health problems early. Use it to learn simple, practical ideas that can help with development. Use it to plan and prepare for the really difficult times…because they will come…they come for every parent no matter how many chromosomes their kids have.
Happy World Down Syndrome Day everyone. I hope your day is as uplifting, joyous and heart-crushingly happy as this little bean makes me and everyone who knows him.