ENLIGHTENED SUFFERING
Author Alisha Prien
“Aww I’m so sorry, It must be so hard…”
I can’t tell you how many times I’ve heard that line as soon as I mention I have a child with a Disability, and it’s my same response every time… usually I laugh and say, “well actually it’s the older 2 fully able children that are the challenge”.
I’m not kidding when I say this, with fully able children comes the never-ending busy life: the sports, the attitudes, the fights, the constant banter oh and the crazy amount of expenses (Food Bill, sports, schooling… etc!)
With Spencer comes, yes: Hospital Trips, Constant doctor appointments, therapy sessions, 24/7 care, Diaper changes, hoisting and some… but also with Spencer is his attitude of ‘just coasting through life happy as ever.’
I often wonder what goes through his head, I know he feels strong emotions, mostly of Joy… How lucky he must be to never have to endure suffering such as us. To never have to endure the pain of loss, the pain of Heartbreak and the cruelness of others sadistic nature to hurt others. Spencer will never have to stress about the financial burden that most of us do, and he will never experience hate. Unfortunately, the other children will endure most of these things, and in fact right now they most likely are being exposed to such suffering. That I feel is much worse for a mother to accept, than the challenge of a child who may be physically incapable, but lucky enough to be ignorant to such sufferings of life.
Isn’t the saying “ignorance is Bliss” …
All my son will ever know is joy and sadness, joy over the smiling faces he endures every day, joy over watching his favourite movie (Cars-lightning MacQueen), and joy over his sibling’s banter as they run around playing tiggy or basketball. The only sadness he endures mostly involves a toddler level of not getting his own way. Sadness over the simplest of things such as being told “No” and going to Bed. Most would dream of such basic sadness…
So, to say “I’m so sorry, and it must be hard”. Well…. No “I’m not sorry…” I may be the 1% that just got unlucky with the circumstances that created my sons now current situation. But I’m not hard done by, I know it could be much worse, and I also know there are others who suffer much more.
I made a choice early on when my son was born that I was not willing to compromise myself as a mother, as a person and as a whole. When it came to my son’s situation, to this day I still choose this outlook on life, and it is because of this very outlook that my family have also taken this same mentality and so have been able to live a normal and content life. There is always something better, always a positive, even in the shittiest of situations. Its how we choose to identify with it, If we say “I am” than we become it. If we say “I feel” than we can detach from it and make it a temporary situation instead of a long-term identity…
Instead of “how sorry” you are for our disabled child…Change it to “How sweet they are, or how inspiring, Brave and strong that parent / carer must be”. We already feel sorry enough times, and the struggle is always real, so let’s keep it light, and keep it on track with how awesome the rest of life will be with such a happy human being who brings such joy to others, and such innocence most can only dream of.
