Our late son still has a place in our family’s Halloween celebration

My husband and I are decorating for Halloween, and every decision reminds us of our late son, Juju. This is our first Halloween since he gained his wings in May, and I keep thinking about the little boy who should be here with us.

Juju lived with CLN2 disease, also known as late infantile Batten disease, but his life was defined by so much more than what the condition took from him. He was our son, and including him in our family’s celebrations still matters deeply to us. We are learning how to do that while missing him in ways I can barely explain.

This Halloween, we’re decorating his wheelchair in his honor, giving him a place in a holiday he should still be here to experience. Looking at that chair brings back the everyday work of loving him, making sure he was comfortable, and bringing him along with us. I would give anything to have those responsibilities back, even for one afternoon. There is something heartbreaking about having his chair here when I cannot reach down and kiss the little boy who belongs in it. Still, my husband and I want his presence woven into what we do.

I have written before about how I will never stop being his mother, and this season amplifies that feeling. My hands still want something to do for my child. My husband still wants to include, protect, and celebrate his son. Decorating gives us a small way to act on the love that remains such a large part of our lives. We can choose something for Juju, say his name, and spend time remembering him together.

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The Compassionate Friends offers ideas for remembering a child during the holidays, including keeping their memory alive through meaningful traditions. For us, decorating Juju’s wheelchair is one way of doing that. Some moments bring comfort, while others remind me just how much I wish things were different. I can want our home to feel festive and still need to cry while we decorate it. Both feelings belong in the home where we continue loving him.

In its overview of grief, the National Cancer Institute describes maintaining a lasting connection with someone who has died as one aspect of mourning. I recognize that connection in our efforts to keep Juju included. His name comes up in conversations about holidays, our plans, and the work we hope to accomplish. I want people to remember the little boy behind that name, even as they hear about his legacy. Every effort begins with how much we love him.

We are also further expanding the Juju and Friends CLN2 Warrior Foundation in his honor, continuing the mission that grew from being his parents. As I shared in my column about grief becoming fuel for advocacy, I want his name connected to family support, research, and the fight for a cure. That work carries my thoughts toward the children still living with Batten disease and the parents fighting beside them. It also keeps me thinking about bereaved families learning to face holidays with someone missing. I want Juju’s legacy to reach those families with understanding and support.

This Halloween, his wheelchair will have a place, and we will keep saying his name. I wish I could finish decorating, turn toward him, and tell him that everything is ready. I wish the next thing I had to do was help my little boy enjoy the evening. My husband and I will carry those wishes as we honor him and keep building something in his name. Juju is forever 9, forever our son, and forever loved, because a parent’s love never ends.

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.