Heart-Based Communication

In our Rare Family Dynamics session this past week we talked about what it’s like to take care of the vulnerable parts of you as you communicate. The reality is being a raregiver is extremely vulnerable and communicating about your Rare child can be a tender experience.

Sharing about your Rare child

Communicating about your Rare child can be challenging, awakward, and maybe you don’t know what to say to people. It’s useful to remember that speaking up is a gift to others. Sharing yourself and your life experience enriches other people’s lives.

Isolation

One of our group members talked about how she didn’t share about her life with her Rare children when they were alive. She felt shy and didn’t know how to share her story which led to severe isolation. It’s risky to share with others and it creates connection.

She has learned a lot along the way and now her message to raregivers is “communicate your story.” You’ll be glad you did.

Feeling resentful

If you don’t know how to broach a difficult topic, your feelings will fester. Resentment will grow. You'll feel stuck and rather than having to ask another person for something, you figure it out on your own. Experiment with how to communicate. Trust that it's okay to "mess up."

Be willing to make mistakes as you experiment with communication.

Before you enter into a delicate conversation

Take the time to feel your heart, and to experience your feet on the ground. Tap into kindness, and the care you feel for the person with whom you are communicating. A powerful phrase you can use to ask for something is “would you be willing to…?” It gives the other person a choice to say yes or no which frees them up to be honest. It’s a great communication tool for you to have in your back pocket.

Remember, authentic communication has the potential to create meaningful connections. Take the risk and trust in the outcome. 

Listen

It’s wonderful to listen and learning to be a good listener takes practice. Be curious. Ask questions without expectation. You’ll be surprised what they are willing to share. Human connection nourishes us like nothing else.

Practice: A writing prompt for you

If you are someone who likes to journal, you might explore this prompt. “Where I feel vulnerable in my life is…” Set a timer for four minutes and let the writing flow from pen to paper. 

Coming up this week: Adjusting to the Diagnosis

Becoming a member of a Rare Family begins with receiving a diagnosis and has many stages along the way. A range of feelings will arise as your life shifts and you become the resident expert on your child’s Rare disease. Come and share the skills that empower you to advocate for  your Rare child’s needs and your own.  Join us for a potent conversation.

You belong

As a Raregiver, you belong here. We gather from across the world to support each other. You are not alone. Come as you are.

Your presence is a contribution.

Zoom Link: Click Here

With Blessings,

Padma