My neighbour rang me yesterday, to ask if I would sign for some medical oxygen she was having delivered for her home birth. Sure I said, no problem. Little did I know that the encounter with the “gas man” was going to be an experience of connection and transformation for both.
Our conversation started off casually at first, glorious weather, going anywhere for Easter, the usual type of thing and shortly after that it spiralled into a deep and meaningful about Down syndrome, which was totally unexpected and at times quite confronting.
I feel completely in my comfort zone chatting to friends in the Down syndrome community about all the complex issues that confront us as parents, the genetic tests, health issues and care, discrimination, opinions, misrepresentation and education. Nothing is off limits and we’re all helping each other to find our way, whilst we decide upon our own views on these matters.
When it comes to sharing these views out into the world however, I generally get a bit tongue tied. This is partly due to a lack of practise and also not really feeling 100% sure or confident with my own personal perspectives.
The conversation with the gas man moved on to topics such as my sons health, did he have a heart problem, then the uncomfortable generalisations, the “they” blah blah blah’s, you know the drill. I was a bit sweaty at this point and my heart was racing slightly. I then took things to the next level, genetic testing, the potential for eradication of individuals with Down syndrome, ethical concerns about that, what do I say to my son, did you know that people with Down syndrome are largely medically neglected, a situation known as medical overshadowing. The heart was racing faster now but this is where the conversation wanted to go.
This man, a stranger in my home, sat calmly taking it all in, he wasn’t shocked, he wasn’t alarmed, why would he be, this is not something personal to his life, or so he thought. He replied with the comment that we shouldn’t judge people who terminate a pregnancy, even at full term, it’s a huge responsibility to take on the care of a child with Down syndrome, or any other disability. He went on to say that these kids are not going to develop in the same way as normal kids, they will need much more support from the parents, will not necessarily move out into the world when they are in their twenties and are basically a shackle around the necks and ankles of the people who care for them.
I cannot argue with some of these points, the truth is that caring for a child with a disability is hard work, for some, incredibly hard work, as serious health and mobility issues are at hand. Let’s face it, I wouldn’t even be sitting there having this difficult conversation if my child were “normal”, I would most likely be sitting in the Autumn sun sipping chardonnay. I certainly wouldn’t have to defend the very existence of my child and all the other T21 children that I have come to know and love.
Here was the crux of it all for me, the very nub of conflict in my heart about Down syndrome and children with disabilities. It’s not necessarily about the child and their suffering, although that’s what the medical profession will tell us, after all, who can truly determine that before or even after birth? It’s just as much if not more about the perceived and sometimes genuine suffering of the parents.
The counter argument to this situation in our community is to educate, to inform people that it’s not so bad, that our kids are amazing, that medical care and outcomes have never been better, whilst quietly glossing over the health issues, struggles with funding, discrimination and stress.
I have found it exhausting living this way, flip flopping between the two sides of the same coin, in order for my brain to make some sense of mine and my son’s place in this mainstream world. Neither of these sides have felt authentic, I’ve been looking for my middle path.
I have, like many of you I’m sure, wondered about the meaning of Down syndrome in my life. I’m not talking about the biochemistry, the supplements, appointments, therapies and all that I’ve just mentioned, I mean what lies underneath all of that, the soul that resides in the body and the biochemistry.
I’ve contemplated why we are are so passionate about celebrating our kids and why their lives and those of their unborn sisters and brothers matters so much. I’ve wrestled with it all until yesterday’s conversation helped me unpack it, lay it bare and see for myself the faults in my thinking.
After all these topics were discussed, I got to the heart and soul of it all, the sweet spot that is going to sustain me for life. I started talking about diversity in our world, how you can’t see an advert on TV, or an article in a magazine that isn’t showcasing the necessity to accept and love each other.
You cannot fault the sentiment but we, as a human race, need to do more than just pay these sentiments lip service with a clever quote and a sassy jingle. We have to actually do something about the division that exists, not just read about it.
I believe becoming a parent to a child with Down syndrome is one way an individual can break down the fake walls and beliefs that keep us divided, and that the experience can provide personal transformation, if we choose to change ourselves rather than our children.
This can be incredibly hard to do, as it requires us to strip away the beliefs we’ve been accumulating since birth, the ones which have locked us in to a paradigm of needing to be perfect and normal in order to be valued, accepted and safe.
It’s only when we look beyond the paradigm that we can begin to see the soul qualities of people with Down syndrome. The genuine authenticity, the way they are lead by their souls and hearts more than their heads and how transparent these qualities are, because they’re not buried underneath layers of conditioning.
We need to be inspired and learn from the qualities of gentleness, love, joy and courage that people with Down syndrome bring in to to the world and more than ever and we need to be around their free spirits, open hearts and honesty.
“We really need and want a world that is free and wild in it’s diversity and acceptance of that, if we are ever going to find the happiness we seek.”
We really need and want a world that is free and wild in it’s diversity and acceptance of that, if we are ever going to find the happiness that we seek. People with Down syndrome can help us to discover these things by opening our hearts, stretching our capacities, and developing our patience and courage.
We need people with Down syndrome in our schools, our homes, our communities and our workplaces, to show others how to live authentically, without shame and self-hatred. We need them to help us challenge the value we put on health, wealth and intellectual and physical perfection, and instead privilege how we love and care for each other and how free and far we will allow our souls to fly.
You may think I’m painting a simplistic and utopian view and a stereotypical perspective of people with Down syndrome and that’s ok, I get that and you may be right but I know there is something about our kids that is unique and yes, special. I know they have unseen gifts that only a parent can feel and see. It’s beyond the clumsiness of my words to describe, because what we feel when we are trying to communicate about our children is indescribable.
This road isn’t always easy, it’s frustrating, lonely, back breaking and overwhelming sometimes and for some of you sheer hell. I don’t want to diminish or ignore these realities, however by putting them into the context of a quiet revolution of soul, it certainly helps me to stay connected to the bigger picture and the small part that I am willing to play.
We need more parents like you who say yes to the children they’ve been given, to the souls that have been entrusted into their care and for a mission that whilst initially unknown, will reveal itself once the dust settles.
The gas man left an hour after he had arrived, we were both changed somehow, who knows what he will do or say with his new found awareness. I’m writing to you, sharing my experience and views, sending another fine thread out into the web, in the hope that it touches someone and perhaps uncover another layer of the mystery and wonder that we call Down syndrome.