Back-to-school season reminds me of the life my son should be living

Grief has seasons, but they do not arrive politely. Sometimes the weather, a familiar smell, or a calendar date cracks me open. Late this summer, it found me in aisles filled with backpacks, notebooks, and first-day outfits. For everyone else, back-to-school season meant a fresh beginning, but for me, it screamed that my late son, Juju, should be starting fourth grade.

I could see everything as if I were doing it again. I imagined choosing his clothes, arranging wheelchair transportation, checking with his nurse and teachers, packing medications and feeding supplies, and making sure his therapies and school supports were ready. Attending school required layers of planning because Batten disease affects education by altering vision, speech, movement, and cognition. I once carried those responsibilities automatically, and now I would give anything to be exhausted by them again.

In my mind, I smoothed his beautiful hair, fixed his outfit, and positioned his wheelchair for another back-to-school picture. I could almost hear myself telling him how handsome he looked and see his smile lighting up the room. Then reality entered, cold and cruel: no bus tracker to check, no transportation call to make, and no fourth-grade picture to post. My son is in heaven, while I stand here with all this mothering inside me and nowhere physical to place it.

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Behind the Batten disease advocate is a grieving mother

People talk about the stages of grief, but my grief has never stood quietly in line. It cycles through sadness, confusion, disbelief, anger, numbness, and brutal moments when reality sets in again. One day, I can say Juju gained his wings, and the next, I see a school bus and my mind screams that this cannot be our life. Knowing what happened and emotionally understanding it are different things.

For rare disease families, grief can begin before death. With CLN2 disease, also known as late infantile Batten disease, we grieved every ability the condition threatened while fighting to preserve Juju’s joy, dignity, comfort, and time. Still, anticipatory grief did not prepare me for the silence after caregiving, or how badly I would miss even the tasks that drained me. There is no training for living in a world that keeps changing seasons after your child’s time on Earth has ended.

I could not survive these days without my husband, Jonathan. He does not try to fix the unfixable or make me feel like my tears are too much. Sometimes he holds me while I break, sometimes we talk about Juju, and sometimes we sit in a silence only two parents who have lost their son can understand. Our grief looks different, but his love reminds me I do not carry mine alone.

Even now, advocacy remains part of how I mother Juju. I keep writing, meeting with lawmakers, participating in the Rare Foundation’s Community Congress and Rare Across America, connecting with families, and building the Juju & Friends CLN2 Warrior Foundation. This does not mean I have moved on, because a mother does not move on from her child. It means his mission continues through every child I fight for.

I once wrote about how Batten disease parents can drive change through advocacy. I believed it while Juju was beside me, but I understand it differently now. Advocacy after loss is speaking with a hole in your chest, telling the most painful parts of your child’s story, and trusting that your broken heart can protect another family. Every time I say his name, I remind the world that Juju was not a diagnosis or statistic, but a beautiful boy who was only 9 and lived, loved, fought, and mattered.

Fall will bring school buses and changing leaves. Winter will bring his birthday and Christmas, spring will carry the anniversary of the day he gained his wings, and summer will return with memories of a life that should still be unfolding. Every season will hold something beautiful and something that breaks me. Still, I will whisper, “This is for you, Juju,” because I cannot walk him into fourth grade, but I can carry his name into every season I am forced to live without him.

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.