Before we had our twin daughters my wife and I were fancy-free enjoying the big wide world, everything seemed possible. Then one of our daughters suffered oxygen deprivation at birth and severe cerebral palsy entered our world like an indiscriminate burglar ruthlessly stealing potential from our daughter Sunshine.
Now disability has refocused our attention from the macro to the micro – from looking outward to looking inward. It wasn’t our chosen path; it has been the only path through the mire. I would never have the courage to walk our journey if given a choice; it is only because it was thrust upon me I am here. I haven’t fooled myself into thinking I am somehow noble because I am in the world of disability.
When the girls were born all the superficial disappeared along with our freedom. There was no time or emotional energy in the bank to focus on what used to be important to us – in some ways it was a cleansing time. I have since realised the haze we experienced was the transitional zone where neither the past could be resuscitated, and the future was still unknown. We crossed from one world to another via a desert called transition – ‘normal’ (whatever that is) – to ‘the desert’ – to the ‘new normal’.
One thing that has stayed consistent throughout this realignment is the instinctual reflex of looking toward others to compare progress as a blunt way of figuring out if I was doing okay in life. It is a hard thing to admit, especially as I am a self-professed introvert who likes to think I don’t care what people think.
Once we arrived at our ‘new normal’ we found ourselves amongst a new crowd also, and among them were views that were as diverse as disability itself. Different perspectives from the various Joneses left us in a quandary wondering which way to turn. We left jobs in the USA to go back home to Australia for our daughter Sunshine to attend the premier early intervention program for cerebral palsy, sacrificing our financial security and in the process we lost our home. A lot was at stake so it heightened our interest in what the Joneses were doing. In a macabre kind of way the financial and personal sacrifice appeased the helplessness I felt by being able to do something physically as everything else about Sunshine’s life was out of my control.
But then the striving started to wear thin and keeping up with the latest therapy or equipment began to feel more like an obsession. I remember being in a meeting run by parents discussing whether a special school or a mainstream school was in the best interest of the child. In Australia there are strong views in support each way. It became obvious during the conversation there was simply no appetite for special schools. It was made clear to us wide-eyed rookies that if we loved our child there was only one option, and that was full integration meaning extra work and funding beyond our means. The internal clang was loud and dissonant, I was already exhausted and it felt like the Joneses just stuck another mountain in front of my path to climb despite our intuition telling us that we should do something different.
Our obsession for Sunshine’s development had gotten to the point that when I put her in front of the TV for some downtime, I couldn’t let myself off the hook because of the relentless voices in my head telling me I should be reading her an educational book or doing therapy. Each night I would climb into bed calculating what else I should have done – there was never any finish line.
We were left in a parental fog. On reflection, I realised that nobody asked us what we thought would be best for Sunshine. In the beginning even we thought the Joneses opinion mattered the most.
Then one day a good friend of ours made a pointed remark as we processed out loud the never ending strive to keep up with the Jones’s. He asked the question, “What about the rest of your life?” It was a simple question that had me stumped and I didn’t know how to answer it. It was in that moment that I realised everything else in our life had been put on hold, including our own wellbeing for the sake of Sunshine. Up until then it seemed admirable to do anything for your child no matter the cost, whether it be personal or financial. Then our friend delicately passed the next hand grenade into our fragile hands, “If you guys don’t pay attention to your own needs, not only will you suffer, but so will Sunshine. Sunshine needs you to be okay more than she needs the right school or the latest therapy.”
I realised that the current pathway we were on had burnt out parents strewn in the ditches exhausted from expectation who had run as far as they could and were now rendered useless. We were like them, determined to help Sunshine at the expense of our marriage and personal life. But no therapy, school or keeping up with the Joneses would ever compare to healthy parents when it came to Sunshine’s wellbeing. It was a simple but profound lesson.
The truth is Sunny can’t do anything without our assistance – that is enough motivation without the added pressure of looking over the fence of the figurative neighbour to see what latest disability focus we should be researching.
If you are a parent or carer who is racked with guilt because you can’t keep up with the Joneses, let it go. Your child, parent or spouse that you care for will not be okay in the future if you are not okay right now. There is a balance to be found and only you know where your tolerance level is. I am not suggesting avoid all pressure as many of us are on this journey and there is no turning back. But there is a sustainable tolerance that can be and should be found. Only you know where that balance is.
Figure out the top three things that fill your tank and take it from the bottom of the priority list and bump it up equally next to the person you are taking care of.
Decide to whom you will listen to and be challenged by, then let everything else wash of your back.
Trust your intuition.
And finally – carve your own path and forget about the Joneses.