A moment in the sun shines a light on more than just the hard parts
Before Batten disease, happiness felt like big things
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There is something about May that feels like a quiet exhale. After months of gray skies, heavy coats, and long nights, the sun begins to linger a little longer. The air softens. The world slowly wakes back up. For a moment, everything feels a little lighter.
As a rare disease mom, I have learned to hold on to those moments in a different way.
Sunshine means more than just good weather in our home. It means opportunity. It means windows open, fresh air moving through rooms that have held so much weight. It means taking my son, Juju, outside, letting the warmth touch his face, and watching the smallest shifts that mean everything to me.
CLN2 disease, also known as late infantile Batten disease, has a way of shrinking the world. Life can quickly turn into appointments, medications, therapies, and a constant awareness of time.
Time starts to feel different. It is no longer measured the way it once was. It becomes something you hold on to in pieces, in moments that carry more meaning than anything else. So when May comes, I lean into it. I chase the sunshine for both of us.
A day in the light
There are days when Juju and I sit outside, and I find myself studying him in the light. The way the sun rests on his cheeks. The way his body seems to settle, even if just a little. The quiet peace that exists in that space. No machines. No conversations filled with worry. Just us.
In those moments, I am reminded that happiness does not always look the way I thought it would. Before Batten disease, happiness felt like big things. Plans. Goals. Milestones you could point to and celebrate. Now, happiness is quieter. It moves more slowly. It shows up in ways you could easily miss if you are not paying attention.
It is in the stillness. It is in the warmth of the sun on a calm afternoon. It is in sitting beside my son and realizing that this moment, right here, matters more than anything else. May brings a shift I can feel, even if I cannot always explain it.
The heaviness does not disappear, but it softens just enough to let a little light in. The kind of light that reminds you to look up. The kind that gently pulls you out of survival mode and back into living, even if only for a little while. There is something powerful about that.
Life has a way of changing without warning. One moment, everything feels familiar, and the next, you are learning how to exist in a completely different reality. Nothing prepares you for that kind of shift. It is something you feel deep in your chest, something that reshapes you over time. And yet, even here, there is still light.
Lightness of being
I have learned that two things can exist at once. I can carry the weight of this journey and still feel moments of peace. I can sit in the sunshine with Juju and feel joy, even while holding everything that comes with this diagnosis. That is where the beauty lives now.
Not in perfection. Not in what I once imagined. It lives in the in-between moments. The quiet ones. The ones that do not ask for attention, but deserve it the most. May feels like an invitation to notice those moments. To step outside and let the sun remind you that there is still warmth to be felt. To slow down long enough to recognize what is right in front of you. To hold on to the small pieces of happiness that show up, even in the middle of everything else.
For our family, sunshine is not just a season. It is something we reach for. It is something we hold on to. It is something we choose, again and again, even on the days that feel heavy. Light does not take away the hard parts. It simply reminds you that they are not the only thing there.
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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