Every parent worries/hopes/prays about their kids and for their futures: we wish for them love, companionship, safety, good health. We pray that they find contentment in their life’s path and that we’ve successfully played a small role in guiding them toward adulthood.
For my little guys though, hmmmm…….When your child has a fatal diagnosis, the worry is not the same. I’ve felt the difference. It’s a bittersweet quality that settles in over everything. It’s a subtle sadness that I refuse to embrace but am not quite able to ignore. I didn’t have a name for it, but I discovered it’s called “anticipatory grief”….A “grief reaction that occurs before an impending loss”. You are literally anticipating grief. You see a loss coming and brace yourself for it, feel some of the emotion of it.
We’re still at the point where to the casual observer the boys seem pretty typical. Sure, Josiah is a little slow to climb the stairs and his running gait is a bit “off”. Samuel takes longer than other 5 year olds to maneuver the ups and downs of a playground, he tires more easily and asks to be carried or ride in the stroller, and he doesn’t run as well as his peers. But the differences go beyond the physical – more and more, it’s being suggested by experts in the field that the lack of dystrophin in their bodies because of Duchenne also affects the way their brains function – OCD tendencies, moodiness, difficulty with transitions, sleep concerns. My husband and I often ask each other “Is this Duchenne, is it that he’s five (or three!), or is this just his personality?” Regardless, we have to work through these issues and come up with coping strategies and tools to make it through our busy days.
I research the best foods to fight the ongoing system-wide inflammation in their bodies. We faithfully give them vitamins and supplements and steroids at the scheduled times. We try to remember to massage and stretch daily. Twice weekly trips to PT. Opportunities to learn and meet other families at educational conferences. But that’s not all, and this is where that anticipatory stuff comes in….
I know that someday my boys will lose the ability to walk. I know that someday they will lose the ability to feed themselves. I know that someday they will require full-time care and we will have concerns about whether their hearts and lungs will continue to function. The list of equipment needs, increased medications/supplements, navigating every moment of activities of daily living, the PHYSICAL-NESS required in daily tasks as a caregiver from my current vantage point seems incredibly daunting if I try to take it all in at once.
But someday is not today. Today they are funny little beings with wonderful insights and so.many.questions. Today they are running like banshees around the kitchen with Lego creations. Today they are excited about going to get a Happy Meal and playing at the park. Today they are little boys living life like little boys do.
Maybe it’s not so different after all: we wish for them love, companionship, safety, good health. We pray that they find contentment in their life’s path and that we’ve successfully played a small role in guiding them toward adulthood. Isn’t that truly what we all hope for EACH of our children?
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