Live Strong & Vulnerable
Can you be strong and vulnerable at the same time? This was the topic of our dialogue this week in our Rare Family Dynamics group. Our tribe is becoming more intimate as we take risks and share our vulnerabilities with one another each week. You are welcome to come anytime.
“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.”
- Brené Brown
Facing the unknown
As a Raregiver™, you may feel vulnerable when you take your child to a doctor's appointment because you may be thinking ‘if they say something I can't handle I’ll totally fall apart.’
First of all, having feelings shows that you are courageous and willing to be yourself.
Your feelings make sense. Why? Because you're having them. It's that simple.
Secondly, showing your vulnerability invites the doctor to share in your humanity which is a gift..
Inherent vulnerability
Being human renders us vulnerable and as a Raregiver™, you may feel even more exposed to life's unknowns. You don't know what is going to happen from day to day or from moment to moment with your rare child.
Fear of what's different
You may also find that you are vulnerable to other people's fears and discomfort.
Several members of our group this week talked about how their rare child has been judged or marginalized. The fact is that people are uncomfortable with what's different. Many of us have been taught that "disability is bad.”
Seeing someone who is different points us to our own vulnerability which most people do not want to face because it's terrifying and asks that we make peace with the fragility of the human body.
Walk with dignity
When someone judges your rare child or makes an insensitive comment, do your best to let it go. Be proud of your child. If it feels like the person is open to learning check in with yourself to see if you have the energy, if you do then, take the time to educate them.
“Crip Camp”
This inspiring documentary film highlights some incredibly passionate and courageous humans living with disabilities. If you haven’t seen it, it’s a must. Here is the link:
An invitation to practice compassion
Vulnerability gives rise to strength and one of the strengths that you will likely develop in your life as a Raregiver™ is compassion. As a Raregiver™, sometimes you may be able to offer compassion to your neighbor, who seems to be ignorant or unkind. This takes a lot of strength and courage.
True compassion asks you to dig deep within. Ultimately, being kind and compassionate will feel better than judging people for what they do not know, and most likely for what they fear.
Coming up this week: Adjusting to the diagnosis & becoming the expert/advocate
Becoming a member of a rare family begins with receiving a diagnosis and has many stages along the way. Many feelings will arise as your life shifts and you become the resident expert on your child’s rare disease. Come share how you advocate for your rare child and what you’ve learned. Please join us for a potent conversation.
Join Us
You may not realize how much you need the ANGEL AID community until you find it.
Zoom Link
We look forward to being with you soon.
