I remember asking this question 5 years ago: Why don’t the parents of older kids with KIF1A participate or share in the Facebook group as much?
At the time, Colbie was almost two. We were newly diagnosed and desperate to understand what this meant. We turned over every rock. We wanted answers to the questions no one wants to ask out loud: What will this take from our child? What should we expect? Will they be okay? Will they be here?
We watched families with older children closely, hoping they held some kind of roadmap or at least proof that what we were reading about KAND wasn’t the whole story. We wanted the good, the bad, and even the morbid. Knowledge felt like control. If we knew enough, maybe we could prevent something. Even though deep down we knew there is no real way to prevent what KAND may take.
A little over five years later, we’re the ones standing in that space we once studied from a distance.
Colbie isn’t one of the KIF1A babies anymore. I remember wondering if she’d even be here five years later. What would she be like? Would she talk? Would she walk? Now parents of newly diagnosed children are looking to us for answers.
I can’t speak for everyone, but I think this is where many of us start to get quieter and not because we care less.
First, we’re exhausted. We’ve spent years obsessing over how to save our children, and probably still are, but we have also learned to step back and focus on this time we have with them a little better too. There’s more to rare disease parenting than constant crisis mode, even when the crisis never fully leaves.
Second, we learn—sometimes the hard way—that there is no way to predict what’s coming. Patterns break. Symptoms change. Two kids with the same diagnosis can live completely different lives. Certainty becomes something we stop chasing because it doesn’t actually exist.
Third, our kids are older. In some ways, things get harder. While we want to offer hope, we’re also living in a more complicated reality, one that doesn’t always translate well into encouraging sound bites. Re-entering that early diagnosis space can reopen grief we’ve worked hard just to carry.
And finally, the grief never goes away. It just burrows deeper. Not because it hurts less, but because there’s less time to sit in it. We learn that staying there too long keeps us from being the parent our child needs right now. So we tuck it away, not out of denial, but out of necessity.
We don’t go quiet because we’ve given up.
We go quiet because we’re still here—parenting, adapting, loving, and surviving in ways that don’t always fit neatly into a Facebook post.
I also didn’t keep up with blogging the way I once planned to. I’m a photographer so storytelling through images and video comes more naturally to me and I try to share Colbie’s journey on Instagram. But I’m aware of how easy it is to slip into the Instagram-versus-reality gap.
Could I share more of the hard parts there? Probably. But Colbie is getting older, and out of respect for her and for her siblings there’s a limit to how deep I’m willing to go publicly sometimes. What I do share is real. Every smile, every moment of joy, every glimpse into our life is honest. It’s just not the whole story. I’m glad she has brought many others hope though and helped them discover or KIF1A community at times too.
There is always more happening off camera. It isn’t all songs and laughter, even on the good days.
We’re still here. We’re still walking this road. And while we may not share the hard stuff as loudly or as often as we once did, we are always willing to help when we can. Especially for those just beginning this journey.
If you’ve found your way here and have a younger child diagnosed with KAND, please never hesitate to reach out. I did the same and am so grateful to the families that let me ask all the questions I needed to ask to know how to best prepare for the impossible to prepare for.
Quieter doesn’t mean absent. It just means we’re living it and still figuring things out as we go too. It means we are more at peace with knowing we don’t and won’t ever have all the answers and our job is to give Colbie the love and support she needs.
I’d be lying if I said I don’t still fall apart sometimes, a lot of times, or that I’ve mastered acceptance. I don’t think that’s how this works. That breakdown blog may be coming soon too. But we have moved beyond those early days and I hope it helps to know that you may one day feel that shift too. Colbie leads us on this journey, one day at a time.
Care for Colbie 