A Moment Of Presence
This week our Rare Family Dynamics Group was overflowing. We asked these questions: what is it like to know that increased care is coming? What arises for you in the face of this? Here is some of what was shared. May it serve and support you on your journey.
Think for yourself
One of our raregivers has a daughter who is 31 years-old and when she was born the doctors told her she was not going to live past her first year. It’s important to take doctors' input with a grain of salt. Remember, they are experts which doesn’t mean they know everything.
Embrace Your Humanness
As you think about full-time care, you must also embrace your own limitations as a human being. It’s wise to focus on what you are doing well, notice what needs improvement and take one step at a time.You are doing everything you can to take care of your rare child and it’s important to practice self-compassion.
Rest into the present moment
Being present is nourishing. This moment is the place from which wisdom arises. When you are present, you can practice acceptance of what is. Light a candle, close your eyes and breathe. Turn your attention inside. Quiet time is healing.
The challenge of looking ahead
There are times in life when you are invited to look ahead. One of our participants talked about moving into a new home and setting up her son's room with big kid furniture. As she did this, she was forced to look at what’s coming. This stirred up anticipatory grief for her and she had a lot to feel.
She realized that in these moments it’s useful to take a break and turn your attention inside. Arrive in present time, breathe deeply and welcome everything you are feeling.
The Insight Timer App is a great resource
If you would like to practice presence, please download the free version of Insight Timer. There are meditations for every occasion, depression, anxiety, sleep, and much more. You can also find numerous meditations there by Padma Gordon.
Fear
When fear of the future arises, you are invited to face it. You are not alone. Lean into your community. There is an old proverb that says, “A joy shared is doubled, a grief shared is halved.”
Coming up this week: End of Life Preparation
On your journey as a Raregiver, you will eventually grapple with how to deal with the end of your beloved child’s life. This may involve grieving while still caring for your Rare child. This experience is called anticipatory grief and can last for several years. Receiving compassionate emotional support during this time is essential and finding opportunities to discuss the journey of death and dying with others will lessen the burden. Please join us for a tender-hearted conversation.
You Belong Here
This group is open to all Raregivers regardless of gender or relationship status. Join our amazing community of Rare caregivers who get you. Come be seen, heard and deeply understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session.
Come as you are.
Your presence is a contribution.
Zoom Link: Click Here
We look forward to being with you soon.
Warmly,
Padma
