Life can change in an instant, and for me, that moment came during what I thought was a routine eye exam. My son’s diagnosis with Usher syndrome sent me spiraling into grief, isolation, and eventually healing. In this blog, I reflect on how I navigated the shock, built walls to protect myself, and slowly reconnected with the world. This is a journey of loss, love, advocacy, and discovering how to embrace the beauty in life’s imperfections.
The Diagnosis
“Mrs. McKittrick, have you ever heard of Usher syndrome?” Those words still echo in my mind, spoken during what I thought would be a routine checkup. Our son, Conner, had been acting oddly at night, and we wanted to be cautious. I had no idea that this simple eye exam would change the course of my life forever.
I somehow made it through the appointment, dropped Conner off at daycare, and returned to work—numb and in shock. But once the weight of the diagnosis hit, it felt impossible to breathe. My chest tightened, and waves of anxiety and despair crashed over me. I wanted to scream, “No! I can’t handle this!” But no words came.
Somehow, I managed to share the news with family and close friends, though even today, I don’t know how. It’s a blur, as if my mind chose to block out those moments.
Learning to Do It All
That moment became a turning point. I stopped crying, stopped feeling, and shut myself off from the world. I put on a brave face for Conner, becoming a fierce advocate to get him the resources he needed.
As an only child, I had always struggled with control, and now my life was spinning beyond my grasp. I had spent years curating the appearance of perfection—but what was I supposed to do now?
What I hated most was the pity I sensed from others. As an empath, I could feel unspoken emotions, and whether real or imagined, they felt like pity—something I couldn’t bear. I had envisioned the perfect life, where I was the perfect mom. Now it felt like everything was crumbling.
Looking back, I realize those weren’t feelings of pity but of sadness and empathy—people simply didn’t know what to say or how to help. But at the time, it felt unbearable, so I did the only thing I knew: I shut people out.
With those walls firmly in place, I found comfort in focusing solely on what mattered—my family. I channeled my energy into researching, advocating, and supporting Conner. I could compartmentalize my life like a pro, multitask like no one else, and put on a smile that masked my pain.
People would say, “I don’t know how you do it—you make it look so easy.” I craved that validation. The more I did, the more I added to my plate, chasing the rush of being seen as superhuman.
Feeling Alone
In those early days, friends tried to help, offering to listen or invite me out, but eventually, the calls stopped. Even when Todd encouraged me to join friends or plan a “girls' day,” I hated every minute of it. I had spent so long keeping people out that I no longer knew how to connect.
I once thought I had social anxiety, but the truth was, I just felt profoundly alone and felt like none of my friends would understand what I was going through. Even surrounded by family, friends, and community, I was lost.
At one of our Hear See Hope auctions, someone told me, “You are so shy and introverted.” That comment surprised me. Yes, I preferred puzzles and quiet activities, but I wasn’t shy—I simply didn’t know how to share my complicated life with others.
Whenever someone asked how I was, I’d feel an internal struggle. I wanted to open up, to share the pain I carried, but my inner voice stopped me. “They don’t have time to listen.” “They’ll lose interest.” “Admitting you’re struggling makes you weak.” And so, I’d smile and say, “I’m fine, how are you?” It became my shield, protecting the image of perfection I clung to.
But over time, the weight of pretending became exhausting, and I lost friendships because I didn’t know how to nurture them anymore.
Discovery
For years, I stayed numb—it was easier that way. I poured myself into work, my family, and advocacy, sharing my story and supporting others in similar situations. But eventually, I broke. I had grieved my children’s diagnoses, but I hadn’t grieved for myself. Somewhere along the way even though I had so many blessings in my life, I had forgotten who I was.
In the early stages of my relationship with Bergen, I realized just how far I had drifted from myself. When her friends and family asked about my life and work, I downplayed everything. Bergen noticed and gently called me out. I’d say, “Oh, I work in deafblind community helping families,” and quickly shift the conversation elsewhere.
That was when I began the hard work of reconnecting with myself. I wanted to accept and love the person I had become. It was time to stop minimizing my impact and acknowledge my contributions to this world. Only then could I build a life that was truly mine—not one shaped by others' expectations.
Healing
One day I woke up with a clear realization: I wanted something different for the second half of my life. In my 50’s, it was time to prioritize myself. I missed the me.
Earlier that year I had started with small steps—improving my physical health with a nutritionist and personal trainer. Those efforts eased my anxiety and helped me find clarity. At the same time, I explored guided meditation, learning to quiet my mind despite the distractions of my “monkey mind.”
The stillness brought emotions to the surface—feelings I had buried for years. It was overwhelming at first, but I discovered peace in the calm. Slowly, my life began to flow as it was meant to.
I delved into energy work, practicing reiki, attending sound healing and breathwork workshops, and exploring chakra balancing. I even utilized plant-based or natural therapies alongside traditional talk therapy. Writing my memoir became a therapeutic process, helping me reframe my story and see the beauty in the experiences that had shaped me.
Through this journey, I started to let people in again—authentically this time. I realized that what I once mistook for pity was my own emotional baggage. I now know that people will love me, even on my bad days, and that it’s okay to ask for help.
Embracing the Imperfect
It’s not perfect, and I still struggle with balancing emotions, asking for help, and knowing when I need it. But I’ve come a long way. I love myself, mistakes and all, and I embrace the challenges that each day brings.
My life is messy, but it’s beautifully mine—and through this journey, I’ve discovered the beauty in imperfection. I wouldn’t change a thing.
What about you? How have you navigated life’s messy, imperfect moments—and what have they taught you about yourself?
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