Once you become a parent, your life takes on new meaning. You want to make sure that you’re always there for your child, to take care of them, provide for them, and tuck them in at night. You want to be there for all the important occasions, their graduation, their wedding day, you want to meet your grandchildren. When you’re the parent of a special needs child though, you also have a completely different set of concerns. Who’s going to get out of bed when they’re half asleep just to make sure (again) that all the doors are locked and all the keys hidden away? Who’s going to use a “death grip” while holding his hand in a parking lot to ensure that he doesn’t run away? Who’s going to chase him at night in the rain as he bolts off down the street? Who will keep him safe from all the dangers that he doesn’t understand?
It’s not just my son’s safety that worries me either. Living with a special needs child is not always easy. In the last two weeks alone we’ve had a bed wetting on the new couch, new blinds pulled completely down, and trails of crumbs that would make Hansel and Gretel envious. He’s the embodiment of “this is why we can’t have nice things.” He’s a non stop eating machine. In the last two weeks alone we’ve had to leave work early to pick him up after an aftercare meltdown, and we’ve had to retrieve him from a neighbor’s house after he just opened their door and went inside (again). Who’s going to be always at the ready with an apology and an explanation for his behaviors?
If something were to happen to my wife and me, I really don’t know what would happen with our son, and that thought keeps me up at nights. We have prepared ourselves so that it would not be a financial strain on whoever would raise our son. Still, it’s a physically demanding job and will only get more so as he grows bigger, stronger, and faster. It’s a time consuming job, sometimes it feels like raising one special needs child takes as much effort as raising two or three typical children. It’s an open ended job, it won’t end when he turns 18. Most importantly though, I wonder who can take on this challenge and not feel that it’s a burden. Who can love him like we do and appreciate him in all the ways that nobody else understands? Who can just look him in the eyes and immediately forgive and forget whatever else may have happened that day? Who can hug him tightly and know that it’s all worthwhile? Sometimes it feels as though we need to outlive our son.
Whoever thought that we needn’t “fear the reaper” obviously was not the parent of a special needs child.