By Padma Gordon
As caregivers, we are often the leaders of our families, holding so much together while navigating the needs of our Rare loved ones. In our recent Women’s Empowerment Circle, we explored what it means to lead with love, beginning with recognizing ourselves for all that we are already doing well. Collaboration, cooperation, and active listening are powerful tools for creating communication where everyone feels seen and heard. And it all begins with you. When you take the time to attune to yourself and your own needs, you become more available to attune to others. Rather than becoming overwhelmed, collapsing, or moving into people pleasing, you can pause, breathe, and respond with greater awareness. Sometimes your Rare child or spouse may be one of your biggest challenges. Perhaps you find yourselves butting heads or caught in a power struggle. In those moments, take a breath. Feel your feelings. Notice where you can offer freedom and agency while still providing the support and boundaries your loved one needs. You don’t have to get it perfect. Self-regulation is foundational to healthy communication, and every pause is an opportunity to begin again.
Another part of leading with love is learning to receive love and appreciation yourself. So often, caregivers think, “She’s just my child,” or “He’s my husband. I’m just doing what needs to be done.” And yet, what you do is extraordinary. If you broke down all your caregiving responsibilities into individual services, you might be an Uber driver, babysitter, personal assistant, medical assistant, nutritionist, and so much more. You would earn a handsome sum for all those hours and skills! There is a cultural message that caregiving has little value because we do it out of love. The truth is, it has tremendous value. When someone says, “Wow, you’re doing a lot,” allow those words to land. Let them in as nourishment. You deserve to be seen and appreciated. And perhaps, alongside the challenges and exhaustion, you can also recognize what a gift it is to care for your Rare loved one. Take a moment to step back, breathe, and feel gratitude for your life and the love that is present.
Here is a simple practice to help you recognize just how much you do. Set a timer for three minutes and write down everything you have done today, for your Rare loved one, your family, and yourself. Don’t leave anything out. Maybe you have a PhD in patience, you’re a periodic food expert, or you’ve become remarkably skilled at navigating idiosyncratic behaviors or changing G-tubes. Perhaps you are an expert in advocating, coordinating, anticipating, and holding space. Write it all down. Allow yourself to see the full picture of your day, including the things that often go unnoticed. You are doing so much. Take a moment to appreciate yourself, to recognize your own strength, and to receive the love and care you so generously offer others. You are a total rock star!
Coming Up On November 4th: Riding The Waves of Grief
As caregivers, you often carry the quiet weight of anticipatory grief while continuing to lead and coordinate the circle of people who support your medicalized family. In this session, we will explore how to have the tender conversations that may arise as we face questions about the future and the end of life with loved ones. Or, are you concerned about what will happen to your rare family member if you pass away first? These conversations require courage, presence, and compassion for ourselves and others who may also be navigating fear, grief, or uncertainty.
Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/84782918881
See you soon.
