Navigating the Holidays with Children Affected with Incurable Diseases

Finding Love, Comfort, and Meaning

F9E96737-0FF2-44F6-B355-731D2D5AEAF7_1_105_c

The holiday season is traditionally a time of joy, celebration, and family togetherness. But when your child is terminally ill, it can feel like an emotional balancing act. Navigating this time of year may bring up complex feelings of sorrow, love, hope, and fear. Yet, the holidays can still be meaningful and filled with moments of connection and comfort.

1. Give Yourself Permission to Feel All Emotions

The holidays may bring up a wide range of emotions—joy, sadness, gratitude, fear, and everything in between. It’s important to allow yourself and your family members the space to feel whatever arises. You don’t have to push yourself to feel cheerful or force a sense of normalcy if it doesn’t feel authentic. Let your emotions flow naturally and encourage open communication with your loved ones.

2. Redefine What the Holidays Mean for Your Family

In this season of life, your family’s holiday experience won’t not look like others—and that’s okay. Let go of societal expectations and focus on creating a holiday that feels right for you and your child. Whether it’s a quiet day filled with simple joys or spending time with close family, the true essence of the holiday lies in love and togetherness, not in big traditions or events.

Include your child in decisions about the holidays if they are able. Ask what they would like to do, how they would like to celebrate, and what activities are most meaningful to them. Honoring their wishes, no matter how small, helps them feel empowered and can create lasting memories for everyone.

3. Create New, Meaningful Traditions

You may feel the need to hold on to familiar holiday traditions, but it’s okay to let go of things that may be too difficult or overwhelming. Consider creating new traditions that fit your family’s current needs. These might include small, intimate moments like singing a favorite holiday song, lighting candles in honor of special memories, or writing heartfelt notes to one another.

You can also bring the holiday spirit to your child in ways that are comforting and manageable. Decorating their room with twinkling lights, hanging ornaments that hold special meaning, or watching a favorite holiday movie can create a festive, cozy atmosphere without requiring too much energy.

4. Be Flexible and Compassionate with Plans

If you’re planning gatherings or activities, remember that things may not go as planned. Your child’s energy levels and needs may change day-to-day, and it’s important to remain flexible. Make backup plans that allow for adjustments, and don’t feel pressured to attend or host large gatherings if it feels too difficult.

If you do choose to include extended family or friends, consider making the event short and focused, with activities that your child can comfortably participate in. Sometimes, even a brief video call with loved ones can bring a sense of connection without the physical or emotional strain of a larger event.

5. Capture the Moments You Treasure

Whether this is your child’s last holiday season or a time when you are simply cherishing each day, it’s important to capture memories in a way that feels meaningful to you. Take photos, record video clips, or create keepsakes like handprints or written notes. These mementos can become lasting symbols of the love and connection shared during this time.

However, if capturing moments feels too emotionally difficult, it’s okay to let that go too. The most important thing is to be present in the moment with your child, honoring the experience in a way that feels right for your family.

6. Seek Support and Lean on Your Community

You don’t have to go through this season alone. Reach out to friends, family, or your community for support, or accept the help that is offered. Whether it’s practical help with holiday preparations or emotional support, don’t hesitate to ask for assistance. Many non-profits, religious organizations, and support groups offer resources and services for families of terminally ill children during the holidays.

7. Allow Yourself Grace

There is no right or wrong way to navigate the holidays when your child is terminally ill. What matters most is that you approach each day with love and compassion—for your child, your family, and yourself. You are doing the best you can in an unimaginably difficult situation, and that alone is more than enough.

Leave a Reply

Your email address will not be published. Required fields are marked *