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Playing G-d is not something I aspire too. Yet life has put me and my wife into that position at times. Having a son with Down Syndrome has given us challenges directly related to those Ashley’s parents have had to deal with. Thank goodness our son is not severely disabled and nor as totally dependent as Ashley is. Despite being blessed with a relatively high-functioning son, there are still areas where his disability prevents him from having the ability to make responsible decisions about certain aspects of his life. Our job as his parents are to maximize his ability to be responsible for himself, to empower him as much as possible. But when we hit a wall that cannot be breached, it is also our responsibility to make the decision for him, in his best interests, as best we can.
If we are not willing to make those decisions on his behalf, who would? I guess family or friends would be our first choice. We certainly would not want it to be a social worker or outside agency. In making far-reaching decisions on his behalf, we can at least be sure that our love and caring for him are an important part of the process.
Do we always do right by our son? I hope so, but I can’t be sure. And while some parents are unsuited for the task, I do know that in our case, as in Ashley’s case, I would very much prefer to trust that a parent is looking out for their childs’ best interest, no matter how radical or different that decision may seem to be. Caring for a child with a disability is a huge, long-term and sometimes daunting task. As shocking as Ashley’s case, and the decisions her parents have made on her behalf, may seem upon first hearing of it, reading the article, her parents’ blog and thinking about the circumstances they made decisions within made me appreciate the thoughtfulness, thoroughness and, most importantly, the love they brought to the process as they tried to decide what was best for their daughters life.
