Missing my son in heaven brings a unique kind of loneliness

Grief has taught me that loneliness isn’t always about being physically alone. I can be surrounded by my husband, my daughters, other family members, friends, and others who love me deeply, yet still feel an emptiness that no crowded room can touch. Since my son, Juju, gained his wings, I have learned there is a loneliness reserved for missing one specific person. I am not searching for company. I am searching for my son.

For years, my life revolved around caring for Juju while he lived with CLN2 disease (also known as late infantile Batten disease), a rare neurodegenerative disorder caused by a deficiency of the TPP1 enzyme. Our days had a rhythm that became part of my body: medications, seizures, other therapies, appointments, school meetings, equipment, and hospital stays. I learned to read him beyond words. A look in his eyes, a change in his breathing, or the smallest movement could tell me what he needed before anyone else understood.

There were days when I was so exhausted that I prayed for one full night of sleep. I wished for fewer appointments and begged God for answers, more time, and, ultimately, a cure. Now I would give anything to have one of those exhausting days back. I would pack another hospital bag. I would sit beside another hospital bed, watch another infusion drip, and stay awake all night just to hear Juju breathe beside me again. That is one of the cruelest parts of grief. The life that once overwhelmed me is now the life I ache to return to.

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The quiet after caregiving is something no one prepared me for. My body still remembers when I should be checking on him. My hands remember preparing medications and adjusting equipment. My mind still has that instinct to listen for him from another room. Then reality catches up with me, and I remember all over again that there is nothing left for me to physically do for my son.

People see me continuing to live. They see me working, caring for my daughters, advocating, attending meetings, writing, and sometimes laughing. They may believe those moments mean I am getting stronger. What they cannot see is what happens when everything becomes quiet again. They cannot see the mother in me still wanting to walk into Juju’s room, kiss his forehead, and whisper, “Mommy is right here.”

On absence

I love my daughters with everything in me. I love my husband and everyone who continues holding me through this. Their love is not lacking. Grief has taught me that one person cannot replace another. Juju had a place within our family and within me that belonged only to him. CLN2 disease changed our lives long before grief entered our home this way. It progressively stole abilities from my child while I stood beside him, trying to preserve every piece of him I could.

Brineura (cerliponase alfa) infusions gave us treatment days and hope, even though I understood treatment was not the same as a cure. I spent years fighting for Juju, researching, asking questions, and speaking up because loving him made silence impossible. I still fight for him now.

Advocacy has become a place where I carry my grief. I speak his name. I tell his story. I continue fighting for children living with CLN2 disease because my relationship with Juju didn’t end when his earthly life did. I’ve written before that I will never stop being his mother, and I feel those words even more deeply now.

The loneliness I carry is not an absence of love around me. It is the absence of my son beside me. It is nine years of routines, caregiving, fear, laughter, hope, and an indescribable mother-and-son connection becoming memories I now have to carry instead of moments I can still make. Some days, I am surrounded by people and still miss my son so deeply that I feel completely alone. I would give anything for one more ordinary day with my Juju.

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.