“‘Stella reminds me of a little girl I used to teach who has Williams Syndrome.’
That’s it. That’s the moment. The moment forever imprinted on my heart. The moment at a parent-teacher conference when my child’s new educator so delicately tossed the disability hand grenade into my mostly well-manicured world. As I walked to my car, I couldn’t type those words into the search bar fast enough. Williams Syndrome. Once I saw the images of people living with Williams Syndrome, I saw my sweet Stella. And I knew.
I wasn’t expecting it. At that point, Stella was 5 years old. 2 days prior, we’d lost placement at the daycare she’d been at since infancy. They said, ‘We are no longer equipped to handle her needs.’ Stella was displaying a myriad of behaviors in addition to her developmental delays. I was furiously checking off all the boxes: she had been to Children’s Hospital several times for evals, she was seen by her pediatrician on a hyper regular schedule, we’d triggered early intervention services in our area, and were making huge strides. Truth be told, I had suspected autism, not a rare disease with severe learning, medical, and life-long implications.
5 years later, I see so much of our diagnosis journey as for me, even though I was completely blindsided. BUT Y’ALL. Those first hours, days, and weeks leading up to Stella’s official genetic confirmation can only be described as an absolute sh*tstorm. The kind of sh*tstorm where you can’t get out of bed, where you sob uncontrollably at everything, where you anxiously watch your child sleep while binge internet researching their potential disability(ies) worrying about the unknowns. Where you grasp at any form of normalcy for the sake of normalcy yet are pissed about the level of normalcy that everyone else is exhibiting while your world is crashing down on itself. Where you are not in control of what’s happening, but where what is happening is shaping the next chapter of your life.
So, there I was and there I stood for what felt like years, but in reality, was only a few months. And ultimately, that’s where I left the old version of me. I had to leave her behind to forge ahead in a new world of supporting my child with a disability. I’ve read that growth is often a by-product in scenarios like these, and for me, it couldn’t be more accurate. Stella is 10 now, and although we are far from dialed in, I’ve learned a ton about the disability community and about myself in the process.
Before Williams Syndrome, I knew very little about people with disabilities. I didn’t know how to interact as a friend, a peer, a neighbor or community member. I didn’t know anything about their families or how disability impacted their lives. I couldn’t fathom the emotional steamroller that comes along with caring for a child with needs on a daily basis; the blinding love, anger, sadness, joy, fear, hope, and stress that’s included in this package deal. I didn’t know how exhausting those emotions would be, much less that you could feel them all in one sitting.
I never recognized or felt gratitude for small things. Like depths of your soul gratitude for small things— a good day at school or saying a new word, and big things like a stable heart echo or getting support services so desperately needed (always harder than it should be). To celebrate small wins with the gusto of big ones and being okay with less of the traditional milestones of our peers. Most definitely, I didn’t expect to find my inner passion for fire alarms, tractors, train exhaust, bugs, leopards, onions, and leaf blowers. I never would have imagined a life where I could find happiness in reading books about house flies and grasshoppers.
To lean into imperfection. I’ve spent most of my life as a perfectionist, yearning to fit in. Controlling what I thought would bring me acceptance and pushing away things that didn’t fit into that narrative. Ironically, I had been working on this right before Stella’s diagnosis and it took disability to help me truly see the beauty an atypical life could bring.
Our journey has bumps. There’s not a day that goes by I’m not reminded of what we miss out on. Stella doesn’t get invited to playdates or sleepovers. She couldn’t join a learning pod during remote schooling. Friendships with typical peers her age are mostly non-existent. She has the mouth of a well-seasoned sailor and uses it without discernment. As a parent, I am constantly navigating medical, schooling, tutoring, activities, and self-care routines alongside her. Our social circles are intentionally small. There are no date nights with the husband. Our life has limitations, boundaries, and a sea of questions about the future.
I get asked a lot if I wish we would have known about Williams syndrome sooner. The reality is it’s part of our story I can’t change, but I think it’s where I’ve found purpose. Though one in five typical individuals are or will become disabled in their lifetime, there is little presence of disability in the vast majority of our day-to-day. It’s a narrative that doesn’t serve our communities well, especially when it comes to identifying and understanding rare diseases. We don’t interact with what we don’t recognize as familiar, and what isn’t familiar we don’t recognize.
Stella and I are sharing in the journey of making disability an expected normal in our community. Where disabled families and people feel belonging, not isolation. A world where exposure to people with disabilities means less likelihood of a child missing out on needed early medical/educational interventions due to late or missed diagnosis. An environment where people with disabilities are not classified as being less.”
This story was submitted to Love What Matters by Jen Keeton from Timnath, CO. You can follow her journey on Instagram. Submit your story here, and be sure to subscribe to our free email newsletter for our best stories.
Read more stories like this:
Provide beauty and strength for others. SHARE this story on Facebook with family and friends.