By John Bateman
Never give up! Fight the good fight! March on!
These are just a few examples pulled from the volumes of advice offered to parents of disabled children. Well-meaning individuals, often family members and friends, try to encourage us with these exhortations. They are especially prevalent following the birth of a disabled child.
Our loved ones have just watched life knock the air right out of our lungs and put us flat on our backs. They don’t know what to say as they stare down at us lying in the dirt wounded and shocked.
In the weeks and months following our child’s birth, we realize that all of this well-intentioned advice is not very helpful. There is, of course, nothing wrong with never giving up, fighting the good fight or marching on, in general, but the advice misses the mark for two reasons.
First, this kind of advice implies that we’re in a constant battle. I don’t know about you, but I don’t like the idea of waking up and strapping on my armor each day. Maintaining a constant fighter’s mentality might work for some people, but for the rest of us it is not a sustainable solution.
Second, it’s not very realistic. A father never giving up on his belief, for example, that his disabled child will be completely healed by either medical or supernatural means, could lead to extreme depression if the healing never occurs. A mother having absolute faith that her child will hit a certain developmental milestone, regardless of the facts about the child’s condition, could lead to the same.
So what is the right solution? What is the appropriate mentality for the parents of a disabled child?
I don’t pretend to have a one-size-fits-all answer. But five years of experience have led me to conclude that the right approach is one of balance. More specifically: acceptance balanced with hope.
I know that “Accept the tragedy!” doesn’t exactly roll off the tongue like “Keep up the good fight!”, but I think it is nonetheless the more appropriate response of the two.
I’m not suggesting that we walk around dour and serious all the time because of our acceptance. Such is not a balanced approach. I’m also not trying to minimize the power of our family’s and friends’ cheerleading. A positive comment from a friend on a particularly bad day, may be exactly what we need.
I am, however, suggesting that positive thinking, alone, lacks the depth to sustain us over the long-haul. Our acceptance grounds us and keeps us sane. Our hope is a critical source of energy that powers us through difficult challenges.
My hope for you is that you find the right balance. In fact, that’s my hope for me as well!
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