Focussing on the Invisible: Anxiety and adoration in adversity.
Sometimes, it all gets too much. When I feel like this, I like to come sit by the ocean. It helps to make my troubles feel like a small ripple in a sea of tribulations…
It bothers me that disability has such a specific stigma. A conjuring of images and connotations that fit a certain mould. It bothers me, the assumptions onlookers convey in their body language. It bothers me that feeling of helplessness, of being alone - the fear of the unknown. But I wouldn’t have it any other way.
Anxiety
My daughter, Emmilou, was born with an ‘invisible disability’ and although it might not look as though she has struggles, difficulties and restrictions, she does. It has been an immense battle that has carved me into a person that I am today and that I don’t always recognise. I feel guarded, sometimes numb… out of touch with reality.
I can’t count the number of times people have said to me, “oh, she doesn’t look disabled?!” or “wow, you would never know that she has been through so much”. But I know. I have an almost photographic memory of all the hospital visits and ambulance trips carved into the back of my brain. My almost full head of premature grey hair and riverbed wrinkles on my face attest to it!
I sometimes feel fiercely protective, stubborn, restless, fearful, tired, frustrated, and annoyed. Heavy.
Being the parent or carer of a child with ‘invisible disabilities’ is complex. It makes you hypersensitive to the outside world, deflective of strangers’ stares and remarks and worried about others’ opinions. In a strange way you feel obligated to over-share… to justify… give reason for the things you do and the things you say. So that others can understand. I guess we as a species are wired that way. To overthink and judge based on our set of experiences and the circumference of knowledge.
Hand in hand with this absurdity to subconsciously substantiate everything you do for your child, is that feeling most special needs parents know only too well: ANXIETY.
And it kicks like a horse! It is another one of those things that you can’t ‘see’… but boy do you know it is there! When you feel your chest tighten, your throat close, your tears pool, your stomach knot, your hands shake, your legs weaken, your heart race… Having a child with an ‘invisible disability’ is bloody hard. But I feel grateful to feel enlightened.
Adoration
Before becoming Emmilou’s mum, I was so naive. I didn’t see the world the way I do now. I was never indifferent, or cruel or overtly judgemental. I just didn’t have any gauge or understanding to know what it felt like to 1) be a parent, and 2) to unconditionally love someone so unique. I hadn’t felt real heartache, nor true adoration. I hadn’t had any trauma, nor experienced what it was like to be incredibly proud. I didn’t know what it meant to put on a brave face, or feel otherworldly elation.
Parenthood is a strange but beautiful dichotomy. It comes with so much adversity and difficulty. You’re practically creating your own biggest vulnerability when you have a child. But it also completely re-invents you. It makes you do things you never knew you’d do. For me, I started a company to help other parents facing the same challenges I am. For others, like my friend Rachel, it inspires them to create their best works, and share stories of those on the same path.
All of the most profound emotions are experienced, internalised and externalised in different ways, and just because you can’t see it- does not mean that it is not there. We all have different abilities, and we all have the ability to be kind, respectful and empathetic.
I think the world is best experienced when you focus on the invisible.
