How Heavy Are Their Hearts?
She still remembers the day she let her son go. ”It was horrible,” she says. ”But there comes a time when you have to switch off.” (Full Article Here)
Switching off? For life?
I realize my situation is very different from many. Different from those only with neurotypical children, with a child overcoming a significant physical disability, a child on a severe end of the autism spectrum, or a child living with another significant diagnosis. My son does not, nor has he ever considered smearing feces as many parents experience, but he can be unpredictably hurtful (not necessarily violent) towards others. He does not rock to and fro in an uncontrollable, unending effort to calm himself, though he can scream like a dinosaur and squeak noises for hours on end.
The challenges we face in helping him negotiate his days are even more difficult during times like these when we’re in the midst of a medication change. In his lifetime, and certainly in his older years, he has bitten, kicked, punched, head-butted, scratched and thrown things at me more times that I could possibly recount…and still I have not thought of switching off for life. Only how to predict aggravaters faster, gauge my responses better.
What we face in a single day being parents, medical navigators, researchers, insurance negotiators, accounts payable and receivable…well, really, more things that I can name in a short post….what we face in a single day, every day, for however many years we have under our belts certainly makes us deserving of an all expenses paid trip to some far off tropical island only to return to a prepaid live-in nanny/therapist/personal assistant. (If you know where I can get one of those, I’ll willingly give up the tropical island part). We need the opportunity to switch off, take a break, regroup, breathe and try again. And sometimes we crash and burn and add another mention in our notebook of worst parenting moments ever…
Yet, this is not to be a judgment. I have no way of knowing what this fine line looks like. We’ve come down some very hard roads, hard being a laughably light description…but I haven’t been in the unforeseen fog that grasps and spins you until a decision MUST be made.
While I know others who have come close to or have had to make such a painful choice such as this, when I see articles such as this or meet intelligent, forthright, encouraging parents who have advocated for their children for years and who have had to meet this crossroad head-on, my heart is instantly heavy. No parent should have to be at this point. I think about what they have endured. The pain they must have been in to come to this decision. What they’ve experienced, questioning they’ve done to themselves, of themselves, endlessly.
However, my thoughts don’t end there….I also think of those children. Our children. The ones most delicate, most breakable. Our children who are trapped in bodies that fail them, who may not be able to communicate with us but can think clearly behind fogged doors. Our children whom, should we look close enough, we see tucked ‘in there’. What have they endured? Beyond the understanding they can leak to us, what pains are they experiencing knowing their disorder has become too much for the person whom they love the most.
I think of those children, and I wonder….how heavy are their hearts?
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This entry is heart breaking because it’s something no one can understand except for them, and no one will ever have experienced enough to understand how heavy their hearts must be. That’s why I love working with people on the spectrum, because even if you can do only one tiny thing to help improve their lifestyles you know that small difference is really a huge difference in their lives. And every time you can really make them smile you know you’ve given them at least a moment without the heavy heart.