Why Caregiver Well-Being Matters in FOXG1 Care
This is your reminder that you are allowed to pause. Even if it is just long enough for a cup of tea.
Many caregivers of children with complex medical needs operate in survival mode for years. This is not a personal failure. It is a response to responsibility, love, and urgency.
What we often hear from families is this:
I will rest later.
I feel guilty saying yes to help.
I cannot afford to slow down.
I usually put my needs last.
Unfortunately, burnout does not always announce itself gently. Many caregivers only begin focusing on their own health after a major medical event, emotional breakdown, or prolonged exhaustion.
Caring for yourself is not something to postpone until things feel easier. For many families, easier does not arrive on its own.
Letting Go of Guilt Around Self-Care
Self-care in the context of FOXG1 caregiving does not look like spa days or perfect routines. It looks like sustainability.
Feeling guilty for taking time, rest, or help is incredibly common. Many caregivers feel they must carry everything alone, even when support is offered. Saying no becomes automatic.
One gentle shift we encourage is this:
When someone offers help, try saying yes. ..
Yes to a meal.
Yes to a break.
Yes to someone sitting with your child so you can step outside.
Yes to support without explanation.
Often, when someone offers support, they may not know exactly what would be most helpful. Vague offers like “I’m here if you need anything” are usually genuine, but they can feel hard to act on. When it feels right, consider responding with something specific, such as, “Actually, it would be really helpful if you could [insert your need here].”
Accepting help is not weakness. It is one of the ways caregivers survive long-term.
Mental and Emotional Health Support for Caregivers
Living with constant medical uncertainty can take a serious toll on mental health. Anxiety, grief, anger, numbness, and isolation are all common and valid experiences.
Support options to consider:
Individual therapy with a provider familiar with chronic illness or caregiving
Teletherapy for flexibility and global access
Caregiver-specific counseling or peer support programs
Journaling or guided reflection to process emotions privately
If professional therapy is not accessible, peer connection can still make a meaningful difference.
Physical Health and Medical Care for Parents
Many caregivers delay their own medical appointments for years. Preventative care often falls away entirely.
Important reminders:
Routine checkups are not optional. They are foundational.
Sleep deprivation is a medical concern, not just fatigue.
Chronic stress can worsen existing health conditions.
If possible, schedule your own appointments with the same urgency you would schedule your child’s. Your body is carrying a great deal, both physically and emotionally. One of the most meaningful ways to care for your FOX is by taking care of yourself, so you can continue showing up for them in the long run.
Respite and Practical Support Options
Respite is one of the most underused resources in caregiving, often due to lack of access, trust, or awareness.
Potential sources of practical support include:
Local respite care programs or disability services
School-based support teams or social workers
Home nursing or trained caregiving assistance
Faith-based or community caregiving programs
Extended family or trusted friends with clear guidance
Respite does not need to be long to be helpful. Even short, regular breaks can reduce burnout over time. It can also start small. Consider asking a trusted loved one to step in for just 30 minutes once a week. Use that time to take a walk, listen to music, or enjoy a podcast. These moments may feel small, but they give your nervous system and body a much needed chance to rest and reset.
Global Caregiver Resources to Explore
Because the FOXG1 community spans the world, here are types of resources families often find helpful regardless of location:
International caregiver support organizations
Rare disease advocacy groups with caregiver resources
Online caregiver forums and moderated support groups
Mental health hotlines available by country
Disability and caregiver benefits through local governments
If you are unsure where to start, your child’s medical team or local hospital social worker may be able to guide you toward region-specific options.
Staying Connected to Community
Isolation is one of the hardest parts of caregiving. Connecting with others who understand FOXG1 or complex care can help caregivers feel less alone.
Ways to stay connected:
Online FOXG1 family groups
Virtual caregiver meetups
Sharing experiences through writing or advocacy
Following community updates and educational resources
Our FOXG1 Research Center’s Instagram.
Community does not fix everything, but it can make the weight feel shared!
A Gentle Reminder
If you have been waiting for a crisis to give yourself permission to slow down, this is your reminder that you do not need to wait.
Caring for yourself is not separate from caring for your child. It is part of it.
Share This Resource
If this post resonates with you, consider sharing it with another caregiver who may need the reminder. Sometimes support begins with knowing we are not alone.
The FOXG1 Research Center is honored to support not only research, but also the families and caregivers who live this journey every day.
You are seen.
FOXG1 Research Center is dedicated to understanding and finding treatments for FOXG1 syndrome and other neurodevelopmental disorders.
Our Team
Drs. Soo-Kyung Lee, PhD. and Jae W. Lee, PhD. are the principal investigators of FOXG1 Research Center. Our team is full of dedicated individuals with the common goal of studying FOXG1 Syndrome to find treatment options and further understand the condition.
Our Publications
To learn more details about our research, please refer to our publications.
