Lead from Stillness
This week in our Rare Family Dynamics session, we talked about what it takes to lead your team of family members, doctors, and other allies. One of the most important things you can do to skillfully lead your team is tend to yourself. In order to be discerning and develop healthy relationships, it’s important to cultivate silent presence.
Growing Your Inner Stillness
How does stillness support your ability to communicate? A quiet mind gives rise to clarity, compassion, and the ability to notice what’s needed. You will be able to respond rather than react when you lead from a place of peace. Wisdom will help you navigate the hard times.
Dynamic Tension
As a raregiver, you may spend a lot of time worrying. The goal is to notice your worry, pause and allow yourself to enjoy your life. By noticing where you place your attention, you will have agency to choose enjoyment over worry.
When negative emotions arise, perhaps you can see them as your teacher. Do your best not to get bogged down in negative thoughts. Downward spirals are draining and you have a lot to do. You are coordinating all of the many people involved in the web of caring for your Rare child.
Owning the Story
It can be very empowering to own the story, and to share your own experience within the experience of your child’s story. Once you have digested and metabolized your feelings, and are not feeling too raw, you can share your experience on social media which is empowering for you and educational for others.
For example, one raregiver, Laura shared the experience of her son, Alden getting his first wheelchair. He had only had it for eight days. She shared what it’s like to see her child be put into a wheelchair and all of the feelings that came up.
You can follow Laura's powerful shares on Instagram @Lauramonroewill.
And to paraphrase Brené Brown, “Post only when you are not looking for something in return.”
Teenagers Are Their Own Breed
When you have a teenager with a Rare disease, things can get very complicated. Teenagers want to be independent and they cannot manage their own care. One of our raregivers shared that her twins who are 18 years old can’t make their own decisions. The reality is that the brain is not fully developed until 25 years of age. Teenagers are like loose cannons. It’s important that you stay closely involved in your teenager’s care even if they try to tell you they don’t need you. They do.
Coming up this week: Full-time Care
When your Rare child is in need of full-time care, your life changes drastically. You may need to stop working or increase your work hours due to greater financial demands. When you stop working, you lose touch with work contacts which may lead to isolation. There are many stresses. You will have less time for yourself, your relationship with your partner and your other children. Join us for a rich discussion.
You Belong Here
This group is open to all raregivers regardless of gender or relationship status. Join our amazing community of raregivers who understand you. Come and be seen, heard and truly understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session.
Your presence is a contribution.
Zoom Link: Click Here
We look forward to being with you soon.
Warmly,
Padma
