Aaron is a vibrant, hilarious, active 12-year-old who loves school, swimming, airplanes, walking his service dog, and goofing off with his brother.

To families beginning their journey: this is ReNU. Our kids (some of whom are adults now) are living their best lives, and we are a community of folks coming together as we all learn about this newly discovered diagnosis. Each person with ReNU is different. If you’re wondering “Will my child … ?” well, we don’t know. Your child will write their own story, just as we’ve seen with Aaron, who was just diagnosed at age 12.

In the beginning

We had very little firsthand experience with disability, and starting down this path when Aaron was an infant was scary. We had lots of questions, very few answers, and a world of medical considerations that we hadn’t even known existed. As a baby, Aaron didn’t really seem present in the world around him. He was floppy and distant and missed one milestone after the next. He was hospitalized for failure to thrive, received a g-tube, was diagnosed with Cortical Vision Impairment (CVI), and his genetic testing odyssey began. For many of us whose kiddos’ disabilities become apparent early on, the beginning is the hardest part. The not knowing is a lot to handle. He started therapies at an early age, and we began to meet other caregiving families. Slowly, the not knowing gave way to something much bigger …

As Aaron got older  

We got to know Aaron. That’s what made this less scary – and ultimately filled with JOY. As Aaron grew, always on his own schedule, he became more than a list of diagnoses or concerns. He became a kid who loves bubbles and music and hanging out with his friends at school. On the medical side, he has added more diagnoses to his list, including epilepsy and autism. On the developmental side, Aaron communicates (often in sentences) on his AAC device (he doesn’t have mouth words, but he’s super expressive and is constantly communicating in many ways), he's walking and swimming (still closely supervised in the pool, but can swim unassisted in the deep end), and is succeeding in school, where he spends his days in both special education and general education classrooms.

Where we are now  

It’s been quite a journey. Getting the ReNU diagnosis after 12 years of searching has added an unexpected chapter, and we’re excited to see how that informs the journey moving forward. We’ve been fortunate to be in community with many disabled adults, who have been essential in teaching us how the heck to do all of this. Among the things we’ve learned: Being disabled is harder than not. Having a disabled child is harder than not. And it’s okay to say that. Our world isn’t built with my accessibility in mind. We’re making strides, but it’ll forever be a work in progress. So, we advocate for our son and others, we do a ton of paperwork (it gets easier, I swear), and ultimately, we find time to just be a family and just to enjoy our kids, even if our family time looks different than we imagined. I wish I could go back 12 years ago and share this photo with my younger self. Even with all of the extra everything, the joy is real and we have a kid who’s thriving and who wakes up excited (and clapping and grinning) every day. We’ll always be learning. And, the more we follow Aaron’s lead, the more he amazes us.