Baby Steps Are a Big Deal For a Baby

I have a hate-love relationship for the term “baby steps.” Maybe this is because of my perspective as a parent (and the hard work it takes to teaching the basics to a tiny human) or perhaps it’s because I feel like it’s a misunderstood concept. The other day, I heard someone shrug off a comment after a coworker was commended on their progress. “It’s just baby steps.” I immediately replied with, “but baby steps are a big deal for a baby!” What does this all have to do with AS?

Because I have seen first hand how baby steps are such a big deal for my husband, Keegan, who was diagnosed with AS nearly 10 years ago after being bedridden for a year at 23-years-old. I remember the days that going to the grocery store was the only thing he could do in a day. I commend those babies for falling down, getting up again, and trying! They’re not thinking, “Tomorrow, I’m going to run a marathon.” Usually, they’re hoping to grab a ball, give a parent a hug, or just enjoy the fact that they’re standing and stepping like those around them. In that spirit, I celebrate whatever baby steps you all out there are taking after reading so many community stories of how small steps make big impacts.

I’ve found 3 takeaways from these discussions

1. Small victories should be celebrated

It’s easy to boast about the big things, and we absolutely should. Keegan and I weren’t sure we were going to be able to have kids let alone him being able to be on the floor wrestling with them. It’s always hard to know where we’ll be 3 or 5 or 10 years down the road, but when we can set those small goals and find the motivation within ourselves to try, then we should celebrate. We often worry so much about not achieving the big goals that we forget that it’s more important to just try to do something than not try at all. (Or, to quote Yoda, “Do or do not, there is no try.”)

2. Aim for progress over perfection

This speaks to a larger problem we have culturally that we aim for perfection. Yet, our definitions of perfection are all over the place. Is Keegan’s definition of perfect a life without daily pain? (That’s not possible?) Is it a life where he can rock climb? (That’s possible.) So rather than worrying about how we display ourselves, let’s celebrate the fact that we’re all on a path to making our lives better for ourselves; that is, that we are making progress. For me and Keegan, this often comes up in our weekly check-ins, where we commend each other on the fact that we tried something even if we failed.

3. Providing ourselves with realistic yet ambitious goals is key

This doesn’t mean that we don’t have goals. Even a baby knows what they’re trying to do—reach mom or dad, walk across the room, etc. That’s a realistic goal for them, but I bet they wouldn’t even try if they were put under the pressure of running a marathon. (Do they even understand the concept of distance at that age anyway?) I often see comments of folks comparing their goals to another AS warrior’s goals, which just sets ourselves up to be disappointed. Life isn’t a competition and as long as we all feel fulfilled and healthy, isn’t that enough? This question of what is a realistic yet ambitious goal is one I often bring up with Keegan’s doctors. It helps frame what they see as a realistic lifestyle and offer suggestions of where Keegan can grow mentally, physically, and emotionally, and if we’re lucky, maybe even relieve some of his AS symptoms.

So to all of you taking baby steps out there, good for you! Share in the comments what your small victories have been in the last few weeks.