Behind the Batten disease advocate is a grieving mother
Since my son's passing, I have learned that strength and grief can coexist
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People often tell me how strong I am. They see the advocacy, the interviews, the meetings, and the columns I continue writing after my son Juju gained his wings in May. They see me speaking about his CLN2 disease, also known as late infantile Batten disease, with determination and purpose. What they don’t always see is the mother behind that strength.
The truth is that grief is not always graceful. Some mornings, I wake up and forget my reality for a brief second before it rushes back into my heart. Other days, I write text messages but never send them because I simply do not have the emotional energy. Even replying to people I love can feel impossible when my heart is carrying so much.
Returning to work has reminded me that life keeps moving, even when it feels like my world has stopped. I smile through meetings, learn new responsibilities, and do everything I can to stay focused. Then I log off, sit in silence, and let the tears flow after holding them back all day. Sometimes strength simply means making it through the day.
People assume that because I keep advocating, I must be healing. In reality, advocacy has become the place where I carry my grief instead of hiding from it. Every column I write and every conversation I have about Batten disease begins with one little boy who changed my life forever. Juju is still the reason behind everything I share.
As my birthday gets closer, I realize this will be the first one since he was born without him physically beside me. Birthdays used to mean hearing my children laugh, taking family pictures, and making memories together. This year will feel different, and there is no pretending otherwise. Some milestones simply remind you of the empty chair that can never be filled.
Finding strength in grief
There are days when I see children around Juju’s age and wonder who he would have become. I wonder what he would have sounded like, what new things would have made him smile, and what dreams he would have chased. Those thoughts still stop me in my tracks because grief has no schedule. It arrives whenever love remembers what it misses.
One unexpected gift has been the support I have found through Bionews, the parent company of this website. What started as a platform to share our family’s journey has become a place where I’ve found understanding, compassion, and people who never stopped believing in Juju’s story. To my editors, thank you for giving me the space to write honestly, even when my words came through tears. To every reader who has followed our journey, commented, prayed for us, or quietly carried our family in your heart, thank you from the bottom of mine.
Many of you never had the chance to meet my son. Yet through these columns, you came to know his courage, his smile, and the love that surrounded him every day of his life. You celebrated his victories, mourned alongside our family, and reminded me that his life mattered. Knowing that his story has touched so many lives has helped me find light on some of my darkest days.
My faith has carried me through the darkest moments. I still notice the cardinals, butterflies, and hummingbirds; the rainbow that appeared when there was no rain; the dancing balloon; and the two bright stars that always seem to catch my attention. Some people may see coincidences, but I see gentle reminders that my little boy is never far from my heart. Those signs do not erase my grief, but they remind me that love never truly leaves us.
If there is one thing I hope people take away from my journey, it is that strength and grief can coexist. Some days, I feel like I can move mountains; other days, simply getting out of bed feels like my greatest accomplishment. I will always grieve, because loving Juju did not end the day he gained his wings, but I will also always be his mother, and that is a title death can never take away. As my birthday approaches, I will keep looking for the signs he sends and sharing his story, because being Juju’s mom is forever enough love.
Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.
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