Every third Saturday of September marks Usher Syndrome Awareness Day, and this year, it falls on September 21, 2024. This day always causes me to reflect on my journey with our two sons who have been diagnosed with Usher syndrome. This year I’ll be spending the day with my friends and colleagues at the Hands & Voices Leadership Conference in Spokane, WA. What a perfect way to spend the day!
Our Story
Twenty years ago, our oldest son, Conner, was diagnosed with Usher syndrome type 1b. I remember that day vividly. It was meant to be a routine eye appointment for Conner, so Todd I told Todd he didn’t need to come with me. We were simply looking for answers as to why Conner was so distressed in the dark. What we got instead was a life-altering diagnosis: “Your son will eventually go blind, and there isn’t much we can do.” I was in complete shock and don’t even remember how I made it home.
But even from that devastating moment, something positive emerged: We needed to know more. We needed to find a cure to help our son. Just one month later, we started the Hear See Hope Foundation, dedicated to finding a cure for Usher syndrome. Almost 20 years later, though there is no cure yet, we have made incredible progress. We’ve learned so much, and we’re closer than ever. I’m grateful that we were able to take that terrifying day and turn it into something hopeful. This year is Hear See Hope’s 20th Anniversary! Dalton and Todd are planning an amazing fundraising event to celebrate. To donate and find out more information: https://www.hearseehope.com/events.html.
There has been even more good along the way. We’ve met incredible people, I’ve learned so much about myself, and I’ve devoted my career to helping other families like mine. These boys came into our lives for a reason, and Usher syndrome has certainly shaped their lives in profound ways. But here, too, I try to find the good.
Conner, now 25, is quick-witted and brilliant. I love our deep philosophical conversations, where I always learn something new. He now lives in Washington state, with his dad, which makes me so happy to have him close. Diagnosed with profound hearing loss at six months old, he received his first cochlear implant at 13 months and his second at age nine. Balance issues have been a constant challenge for him, perhaps more than the gradual vision loss. Now, at 25, he has about 5% of his peripheral vision and uses a cane to navigate. Despite all this, Conner is an avid reader, thanks to the Kindle app with magnification and inverted colors. As my firstborn, Conner has taught me more than I could have ever imagined about being a mother. I’m so blessed to have such an amazing son.
Dalton, our 16-year-old, also has Usher syndrome type 1b. He is incredibly thoughtful and caring, always quick to notice if something is bothering me and offering reassurance. He has a deep love for animals and is never far from one of our pets. Diagnosed at birth, Dalton was the youngest child at Seattle Children’s Hospital to receive bilateral cochlear implants at just six months old. His vision loss has been much slower than Conner’s, though he already has night blindness and some blind spots. He is quite the advocate for Usher syndrome and really enjoys talking with families and others to raise awareness. This year he’s starting Running Start (college in high school). Dalton, I’m so proud of you.
Reflections
It’s important to celebrate the good, but it’s just as important to acknowledge the challenges. This year has been nothing short of transformative for our family—with the divorce, selling our beloved ranch, and navigating many other changes. The past two years have been incredibly tough, with struggles that both the kids and I had to face together. However, once I made space for self-care, I was able to see the good in our lives, not just the obstacles. That’s what I’m celebrating today.
This isn’t the life journey I envisioned. My life is messy, and there are moments when I feel like I’ve hit rock bottom, but I wouldn’t trade it for anything. Advocacy helped me find my voice, and through that process, I discovered more about myself. By sharing our story, I’ve realized I can help others feel less alone, which brings me the most joy. Lately, I’ve been reframing my mindset from “Why is this happening to me/us?” to “Why is this life happening for me/us?”—fully embracing a more positive perspective.
On September 3, 2024, my memoir was published! Writing it has been a labor of love—both terrifying and exhilarating. It’s the culmination of my 25-year journey through grief, loss, and ultimately, self-discovery. Allowing myself to be vulnerable and honest about this path has been incredibly healing. I hope you’ll take a moment to read my story, whether through my memoir (I would appreciate you reading my book, writing a review, or sharing it with others) or my personal blogs.
Finally, I couldn’t have done any of this without my village—my USH/DeafBlind community. When I have tough days (and there are still many), I turn to my community for support, and they never let me down.
It’s funny how this past year brought about a lot of change that was hard. But, it has turned into a year filled with so much to be grateful for. I’m proud of our boys and who they’ve become. And I’m proud to be their mom.
So, this Saturday, I’ll be spending it with my friends, thinking of my kids, and appreciating the incredible Usher/DeafBlind community that surrounds us with love and support. Thank you to everyone who reads my blogs, supports my research, and picks up the phone when I need you.
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