Caring Through the Holidays: Holding Hope, Even When the Season Hurts

The holidays are often wrapped in sparkle. Twinkling lights. Familiar songs. Family traditions passed carefully from one generation to the next.

But for many families navigating ALS or grieving a loved one lost to ALS, this season can feel very different. The world insists on joy, yet their reality holds something far heavier. Grief sits beside gratitude. Love sits beside longing. And the holidays become a time when both can feel impossibly big.

At Hope Loves Company, we know this well. For more than a decade, we have walked alongside families who love someone with ALS or who have lost someone from the disease. We have seen the courage of children who grow up too quickly, and the strength of parents doing everything they can to keep hope alive at home. We’ve seen the ways ALS shifts the rhythms of daily life, physically, emotionally, financially, and more... and how holidays can amplify those shifts.

When the Holidays Feel Heavy

There is a particular ache that arrives for families facing ALS this time of year. Small moments like hanging an ornament, hearing a favorite song, setting one less place at the table can open the floodgates.

Some families are caregiving through the season, navigating equipment, schedules, exhaustion, and uncertainty. Others are grieving, moving through a holiday without a voice they long to hear or a laugh they wish could fill the room again.

Children especially feel this contrast deeply. They see the holiday excitement around them at school, online, and in their communities. They want to participate fully, but they also carry worries larger than most adults can imagine. They may be missing the parent who once lifted them to place the star on the tree. Or dreading the changes in a loved one’s health. Or holding onto memories so tightly, afraid they might fade.

These experiences are real. And they deserve to be acknowledged with compassion.

Where Love Steps In

Hope Loves Company was created for exactly this reason—to make sure children and families walking the ALS journey never have to do it alone. Founded by Jodi O’Donnell-Ames after her own family’s loss, HLC began as the support she wished her children had. Today, it continues to grow into a warm, steady community of understanding, connection, and hope.

At Camp HLC, children discover peers who get it... because they’ve lived it too. They laugh, create, share, and remember together. They build confidence and coping skills that carry them well beyond the weekend.

Through Hugs of Hope care packages, a child who feels scared or isolated is reminded: “Someone sees you. Someone cares.”

Our virtual programs offer space to talk, to process, to breathe, especially during seasons that stir up big emotions. Monthly groups for kids, teens, and young adults help them feel less alone, while parents find understanding in their own meet-and-greet sessions.

These moments of connection matter. They don’t erase the pain, but they soften it. They don’t fix what ALS changes, but they remind families that compassion and community still surround them.

Let Yourself Feel What You Feel

If your holiday season looks different this year... if it feels quieter, harder, or heavier than you hoped, know that you are not alone.

You are carrying love through one of life’s hardest journeys.

Some days you may want to lean into the festivities. Other days you may want to step back, simplify, or let a tradition rest. Both are brave.

Grief does not follow a calendar. Neither does healing. And hope makes room for both.

If you need community, connection, or simply a place where your experience is understood without explanation, our programs are here for you at no cost to families. Whether it’s Camp HLC, virtual support groups, or a Hugs of Hope package for your child, you are welcome here. You always have been. You always will be.

Sending You Care & Compassion this Holiday Season

From our Hope Loves Company family to yours, we wish you moments of peace, comfort, and unexpected light in the weeks ahead. May you feel supported. May you feel held. And may you feel a present hope no matter what this holiday season brings.

We are here to walk beside you.