Golden Nectar of Acceptance
Our discussion this week in the Rare Family Dynamics group focused on how to accept what is. This is often easier said than done. We talked about what supports you to open your heart and accept things as they are, and what gets in the way of this.
As a Raregiver™, you will need to have hard conversations about things that are very challenging. When you bring curiosity to these conversations, the doorway to communication opens. Take the time to ask questions and invite the person with whom you are talking to ask you questions.
Curiosity yields fruitful dialog
Judgment, on the other hand, interferes with communication and oftentimes creates misunderstandings, hard feelings, and messes to clean up.
The inner critic
Many of the participants in the session spoke about how the inner critic rears its ugly head, saying things like, "You should have. You could have done more…" The fact of the matter is you are doing your best, please be gentle and compassionate with yourself.
One participant told a story of her adult son, who has a doll that he is very attached to. He asked her to buy a “friend” for his doll and she agreed. They went to the Goodwill and he insisted on bringing his doll into the store at first she got upset with him and said no. She was feeling ashamed. She was worried that someone would think he’d stolen the doll. Shame took over. In moments like this, It's important to notice what is arising, take a breath, pause, and feel your feelings. From a place of calm, you can see what’s needed and respond accordingly. Ultimately, she let him bring his doll into the store and they found a wonderful “doll friend" for him.
A challenge to accept
You might have a situation with your rare child when you cannot figure out what they need and they are angry, frustrated, and in pain. It's hard to accept when you can't help your child get out of pain. We feel our children’s pain as parents.
At these times, it's useful to pause and step back from the situation. From here you may be able to accept that you are having a moment of challenge and gain a fresh perspective.
Hard conversations
Sometimes it may feel easier to bury your feelings rather than having a hard conversation. Is this your M.O.? Maybe you decide not to go there because it’s too uncomfortable or perhaps you think to yourself, "Maybe I'm wrong?" This is self-doubt. It is your fear of wanting to be felt.
In these moments be kind to yourself. Many of us didn't learn how to feel our feelings as a child.
What if you say to yourself, “I have feelings and my feelings make sense.” Each time you do this. You are showing up as the older, wiser version of yourself. You are being the compassionate parent you perhaps never had. By doing this, you send a message to your younger self. It's the golden nectar of loving-kindness dripping down into all those moments where you were not allowed to have your feelings. You are affirming that it’s okay to feel. This is how you heal the past, and the present.
Coming up this week: Setting Boundaries
Parenting your rare child means navigating a host of dynamics with your extended family. Oftentimes, your relatives won't understand the nature of your child’s disease or what it’s like for you to live as a Raregiver™. Misunderstanding and denial may come up. Your family may even go so far as to deny that your child even has a medical issue. This can be incredibly frustrating.
We will look at how comparison can be harmful. You may be comparing your Rare child to your nieces and nephews when you see photos of these neurotypical children hitting milestones that your Rare child may not hit. Learn tools for setting boundaries with yourself and others as well as ways to interrupt judgment and stop “shouldding yourself.”
You Belong Here
As a Raregiver™, you belong here. We gather from across the world to support each other. Your presence is a contribution.
Zoom Link: Click Here
We look forward to being with you,
Padma
