My son may be in heaven, but I will never stop being his mother

Every once in a while, my fingers betray my heart. Without even thinking, I’ll unlock my phone and instinctively open the bus tracker app, waiting to see my son Juju’s school bus make its way toward our house. It had become such a normal part of my morning routine that my hands still remember exactly where to tap.

Then reality catches up with me. There isn’t a bus to track anymore. There isn’t a little boy waiting by the door with his backpack and his beautiful smile. There is just me, staring at my phone, wishing I could go back to the mornings I once thought were ordinary.

For years, my life revolved around Juju and his CLN2 disease, also known as late infantile Batten disease. Every day began and ended with making sure he was comfortable, safe, and surrounded by love. Our lives were measured by Brineura (cerliponase alfa) infusions every other week, along with other therapies and school. It wasn’t always easy, but I would give anything to have those exhausting, beautiful days back.

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I’ll always be Juju’s mommy

Since Juju passed away in May, people often ask me how I’m doing, and I’ve learned that “I’m OK” is easier than explaining the truth. The truth is that I don’t just miss my son. I miss being the kind of mom that only a medically complex child can make you. I miss packing his backpack, watching for the school bus, loading his wheelchair, and the sounds that filled our home. Grief isn’t only about missing the person you love. It’s grieving the life you shared together.

Some of my favorite memories aren’t the milestones most people remember. They’re the quiet moments that belonged only to us. I would sing to Juju, and no matter how off-key I was, he would look into my eyes with the sweetest smile. Sometimes he’d giggle, and in those moments, every worry about CLN2 disease disappeared. To him, I wasn’t a nurse, an advocate, or a caregiver. I was simply Mommy, and my voice was enough.

Now, I still catch myself humming those same songs. I’ll be folding laundry or washing dishes when one slips into my mind. For just a second, I can almost picture him smiling back at me. Then the silence reminds me that I’m singing to a room that no longer echoes with his laughter. I don’t stop singing, though. Somewhere deep in my heart, I hope he still hears me.

The hardest part isn’t that my arms are empty. The hardest part is that they’re still his. All the love I poured into caring for Juju didn’t disappear the day he gained his wings. It still lives inside me, searching for somewhere to go. I still want to kiss his forehead when he doesn’t feel well. I still want to tell him that Mommy is here and everything will be OK. Love doesn’t end when life does. My son didn’t stop being my child the day heaven became his home.

People tell me I’m strong, but they don’t see the moments that bring me to my knees. They don’t see me crying in the shower because it’s the only place where no one hears me. They don’t see me walk past his bedroom and instinctively glance inside, as though somehow he’ll still be there waiting for me. They don’t see the guilt that creeps in on the days I laugh, or the ache that follows when I remember he isn’t here to laugh with me.

CLN2 disease took away birthdays I dreamed of celebrating, milestones I prayed I’d witness, and a future I pictured from the moment I first held my little boy. But it did not take away my motherhood. That title didn’t end with his last breath. It lives in every memory I cherish, every family I encourage, every child I advocate for, and every word I write.

I don’t know if grief ever becomes lighter. I think we simply become stronger as we carry it. Some days I carry it with grace, and other days it breaks me all over again. One thing never changes: I am still Juju’s mom. And if heaven allows little boys to hear their mothers sing, I hope he still hears my voice, because I’ll never stop singing to 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.