As parents, we often have dreams and expectations for our children—visions of their first steps, their first words, and the milestones that we eagerly anticipate. But for some of us, those dreams take an unexpected turn, and life’s challenges reshape what it means to be a parent. This is the story of Lillian, a mother whose journey from survival to joy will inspire and touch the hearts of those navigating the complexities of raising a child with severe medical needs.
Lillian’s son, Mirai, was diagnosed with Dravet syndrome, a rare and severe form of epilepsy, at the age of two. The early years were filled with frequent hospital admissions, emergency visits, and a profound uncertainty about the future. As Lillian recounts, “We very quickly became frequent flyers at CHEO (Children’s Hospital of Eastern Ontario), and eventually SickKids in Toronto.” The first two years were a blur of seizures, tests, and waiting for a diagnosis that would change everything.
When Mirai was finally diagnosed, Lillian and her family made the brave decision to move to Japan in search of treatment options not available in Canada. It was there, at three years and eight months old, that Mirai took his first steps. Lillian describes the moment with palpable emotion: “I’ll never forget that day. He started walking and saying some words, mostly in Japanese. It was life-changing.”
For seven months, it felt like the family had found a sense of normalcy. Lillian experienced the joy of seeing her son walk and talk, free from the hospital for what felt like a lifetime. But their journey took another drastic turn. Eight months later, Mirai suffered a severe seizure that would change their lives again. “That episode almost took his life. I went to the hospital with a little boy who could walk and talk, and I left with a child I didn’t recognize.”
It was during this time that Lillian realized the deep emotional toll that caregiving had taken on her. For years, she had been running on survival mode—making decisions, caring for her son, and keeping her family afloat. She candidly admits, “I didn’t know who I was anymore. My plans for motherhood, my dreams for my son—they all changed within 24 hours.”
In the aftermath of Mirai’s life-threatening event, Lillian’s life became a delicate balancing act. She had to learn to care for her “new baby,” a child who now had a G-tube, was visually impaired, and could no longer speak. “It wasn’t just about learning to care for him physically,” she shares. “I also had to figure out who I was as a mother and a person in this new reality.”
Lillian’s story is not just about survival, though—it’s about finding joy amidst the challenges. Over time, she realized that her relentless pursuit of therapies and treatments to “get her son back” was robbing them both of something important: memories. “I had spent years focused on therapies, trying to fix him, and I wasn’t creating memories with my son. That realization was a turning point for me.”
As Lillian opened up to the idea of creating memories with Mirai, their lives transformed. Instead of focusing solely on therapies, she began to embrace activities that brought joy to both her and her son—horseback riding, trips to the movies, and visits to parks. She found that when she made space for joy, the healing followed.
Part of Lillian’s journey toward healing also involved caring for herself. As she began seeing a therapist and finding hobbies she enjoyed, like playing squash, Lillian discovered the importance of self-care. “I had to learn that it was okay to take time for me. It was okay to let go of the guilt and allow myself to experience joy.”
Lillian’s story is a reminder that as parents, especially those navigating the challenges of raising a child with complex health needs, we must find ways to nurture ourselves. She emphasizes the importance of checking in with herself throughout the day, asking, “Where am I today? What do I need?” Whether it’s a simple five minutes of meditation or a long walk, Lillian has learned that her well-being directly impacts her ability to care for Mirai.
The biggest transformation for Lillian, however, has been her relationship with her son. “I’m no longer trying to get my old son back. I’m embracing the beautiful person he is today. My son has taught me to find joy in the simplest of moments, and that joy has enriched my life in ways I never imagined.”
Lillian’s journey is an ongoing one, filled with challenges, surgeries, and difficult days. But through it all, she has learned to let go of expectations and find peace in the present moment. “We may not have the life we expected, but the life we have is full of joy. And for that, I am grateful.”
Her message to other parents is one of hope and resilience: “You will have difficult days, and there will be times when you feel lost. But know that there is joy to be found, even in the hardest moments. You matter, and taking care of yourself is essential—not just for you, but for your child.”
Lillian’s story is a testament to the power of love, self-care, and embracing the unexpected. It reminds us that even in the midst of challenges, joy is always within reach.
Conclusion
Lillian’s experience of navigating life with her son Mirai offers powerful lessons for all parents—whether their journey includes medical complexities or not. Her story reminds us that parenting isn’t just about survival; it’s about creating joy, finding peace, and embracing the life we have. As we learn to take care of ourselves, we become better equipped to care for those we love.
If you found inspiration in Lillian’s story, consider how you might create more moments of joy in your own life. How can you care for yourself while caring for your child? And most importantly, what memories will you make together?
To listen to the full interview with Lillian Kitcher please visit: https://christinelabbe.com/podcast/ and select one of the many platforms where our podcast is featured. Or watch it on YouTube.