Nourish Yourself
One of the most important things you can do as a Rare caregiver is to prioritize your own self-care. This can be challenging since you have many responsibilities and little time to yourself.
We discussed this topic in our Rare Family Dynamics Workshop and asked questions like: What nourishes you? What gets in the way of taking care of yourself?
Being with Your Feelings
Maintaining your own self-care increases your capacity to be with your feelings. Feeling your feelings takes courage. It is a self-loving act. Sometimes feeling your feelings can be devastating because you wish there was more you could do to fix your Rare child’s situation.
Acceptance
When you practice accepting the unfixable and recognize that some things are just not solvable, you are practicing self-love. Acceptance means you love your kid whether they get healed or not. You open your heart wide, realize you are not in charge and that acceptance extends even to palliative care.
Many Hats
As a Rare caregiver, you wear many hats. You have a full life and an order to live sustainably, it’s important to find ways to nourish yourself. In the midst of being busy with multiple doctor's appointments, administering meds, containing chaos and managing your Rare family, you still need to find time for yourself.
Nourishment
How do you nourish yourself? Here are some of the things we came up with:
Attend a weekly Angel Aid support group
Open to loving your life as it is
Engage in active rest. This may include attending groups, hiking or stretching. Take a rest from doing.
Pay attention to what you need physically, mentally, emotionally and spiritually
Take regular breaks
Listen deeply
Don’t override your listening
Be intentional about where you put your energy
Coming Up This Week: Extended Family Dynamics: Misunderstanding, Denial and Comparison
Parenting your Rare child means navigating a host of dynamics with your extended family. Oftentimes, your mother or sister will not understand the nature of your child’s disease or what it’s like for you to live as a Rare caregiver. Misunderstandings may run rampant. Others many even deny that there even is a medical issue with your child.
You may discover that you compare your Rare child to your nieces and nephews when you see photos of these neurotypical children hitting milestones that your Rare child may never hit. Come share your experience with other Rare caregivers who know what it’s like to walk in your shoes.
You Belong Here
This group is open to all Rare caregivers 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 (pajamas and unbrushed hair are our style).
Your presence is a contribution.
Join us via Mighty Networks: Click Here
We look forward to being with you soon.
Warmly,
Padma
Meeting Quote: Susie Dugan (Rare Mother - UBA5)
“Kindness is sometimes respecting others’ boundaries - what a gift that is to the other person’s ability to be kind to themselves.”
