My first kid came 16 weeks early. I see your math-wheels turning, converting that into months. Yep. He spent 3 months in intensive care and 3 weeks in a transitional hospital. He was about 6 months old when he first brought his hands to midline (the center of his body in front) and 8 months old when he passed a toy from one hand to the other. Two important firsts for which we had been watching and waiting.
On each occasion we photographed the event, reported it to our parents, physical therapist, occupational therapist, developmental followup personnel, pediatric neurologist, and family friends. And each time one friend or another said “I didn’t even know that was a milestone. I wonder what else I have missed.”
A friend on a parallel path called to tell me when her daughter reached for a tree branch outside, around age 8, and how she and her partner wept with the joy of it. That takes vision, planning, desire, cognition, hand-eye-mind coordination! States away, I wept into my phone too. We rejoiced together.
The highs and lows of raising atypical kids are extremely low … and extremely high. There are ways that parents of “typical” kids don’t get to experience the intense joy, love, and gratitude that we get to feel. Initial diagnoses, possible outcomes, and planning courses of treatment are shocking. Keeping track of appointments, services, medications, medical histories, and both short- and long-term goals are hard, and parenting atypical kids is hard, even grueling, with spurts of hopelessness and a constant quiet drone of worry –like that annoying neighbor who is always mowing his lawn.
In most cases, that’s not ALL it is though. While the bulk of parents quietly check off those big visible milestones — tick, tick tick — we warriormamas study that list and all the wee steps leading up to each developmental check mark. Waiting. Watching. Hoping. When it happens, it is huge. A prayer answered, a celebration inside and out. Hearts a-burstin’, eyes a-dancin’, skipping, cartwheels, screaming, and jumping for joy. Jealous? Our victories aren’t celebrated as points on the way to college, tech school, moving out, or adulthood, they are self-contained victories, and the joy we feel is so enormous, it can almost break us.
A facebook friend recently shared a report on which colleges graduate those students who end up making the biggest salaries, disappointed that his kid’s college wasn’t on the list. As a parent, that is so far from my frame of reference, I can’t believe that we are both talking about parenting. As I type this I am reveling in one good day — how it sounded smelled and tasted — and I know that in some deep way, I am the lucky one.
Come on over to Facebook and tell me what your hardest joy in parenting has turned out to be.