April 18, 2016
Topics: Riley Kid Story
“For us there is only the trying. The rest is not our business.” (T.S. Eliot)
I often wonder what it would feel like to think of milestones as these sort of obvious, expected, and matter-of-fact celebrations in my son’s development.
Instead, milestones for us represent weeks and months of hard work.
Sometimes, when it takes longer than expected as his peers pass him by, I can feel like a failure as a parent. Other times, when finally achieved, I feel like we were silly forever worrying because he’s going to be just fine.
Like many aspects of having a child with special needs, it’s a roller coaster that we never asked to ride, but we’re figuring out how to enjoy it anyway.
And enjoy it we DO! Recently, our 19-month old son Max started walking—just small steps when he is feeling confident, but around here, small steps are a big deal. You’d think he is climbing Everest.
Max was born with Posterior Urethral Valves, which led to end-stage renal disease and his receiving nightly peritoneal dialysis treatments at home to make up for his lack of kidney function. Like many “kidney babies,” he has a host of other health issues including low tone, which means that mobility has been a major struggle from the beginning. We’ve worked extremely hard on motor planning and gross motor development during weekly in-home physical therapy sessions with our therapist through First Steps of Indiana.
Max is doing amazingly well—especially given the scary circumstances surrounding his birth and the 69 days we spent in the NICU at Riley Hospital for Children. Yet, that doesn’t mean that I’m always able to see things in such a positive light. I’ll admit that I’m a results-driven, and often competitive person. I like to win, and I like to achieve goals.
But through all of this, one of the most important lessons I’ve learned is that, as parents, we can’t place our own timelines on our kids. It’s not about lowering expectations—it’s about not having them in the first place.
I often remind myself that Max doesn’t care at all about milestones. He is happy, curious, quirky, and having a blast discovering new things on his own time. I’m slowly learning to let go of comparisons, erase my expectations, and find joy in the trying.
I’m so proud of where we are—and if that means that I no longer allow myself to look at the “Baby Milestones” app on my iPhone because it makes me worry about things I can’t control, so be it.
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