Life would be so much easier if there was really audience participation – wouldn’t it? Then you could determine if you were making the best choice for your life by how the reaction you receive, and react accordingly.
I jest, yet I can’t help but feel that’s how life is. There is no end of well-meaning individuals who are quick to voice their opinion on what you should do with barely a glance at what your life entails or (seemingly) thoughts about possible long-term consequences.
Today my son and I saw a physician, to get the second opinion needed when filing for Guardianship. This has been an internal struggle since before my wife passed, with me on the side of supported decision making. Yet when I review the evidence before me in as dispassionate a view as possible (not cold, just trying to be impartial) – I think I’m fooling myself if I believe he is capable of understanding the complexities associated with some of the decisions adults make almost daily.
In some ways I envy my son his innocence, and wish the world were a different place. Somewhere I wouldn’t need to worry about someone taking advantage of his trusting nature, or not so rushed as to really take the time to make sure he understands exactly what he is agreeing to (he has a tendency to agree to please people).
As a widowed father of a son with disabilities it’s not just an academic exercise to contemplate what will happen when I’m gone. I think most parents have these thoughts, although I doubt they dwell on them to the extent I (and I’d guess many of my peers) do. I’m fully aware the choices I make today will affect him for his lifetime, not just mine. Shows, like the Good Doctor most recently, do little to reflect the realities parents and families face (purely my opinion).
These shows don’t display the struggles to communicate; the fights with insurance companies for adaptive and assistive technology; the stress-bred exhaustion and seemingly constant struggle against a bureaucracy and population who seem to want nothing more than to make services more restrictive or remove them altogether. These shows don’t show the impact MEDICAID and SSI have, they don’t touch on the fact families with children who have disabilities may spend more than 10x’s the national average to raise their child.
There is no “right” answer, life isn’t that black and white. It took me a long time to realize this, and if I’m being honest it’s something I still struggle with. Life’s not meant to be “fair”, but it should be equitable. The majority of families are doing the best they can, a fact I would encourage everyone to consider before being quick to judge because you see a meltdown in the store.
To my fellow families – the struggle is real. Know the decision you made today is the “right” one, because you made it with all the information available to you at the time. It’s pointless to second-guess yourself or listen to those who could’ve done it better. Continue putting your best foot forward, don’t give up. Contrary to how it may feel, you’re not alone.