Acceptance

This week in our Rare Family Dynamics group we talked about,the places we go when we compare. We explored how radical acceptance can support us to free ourselves from the pain of comparison and how awareness supports us to interrupt the habit of comparing.

The phrase, "compare and despair" can serve as a good reminder or a dharma bell.

Suffering arises from what we make things mean about us when we compare and judge.

It can be useful to recognize the "this means that '' structure. Just because somebody has achieved something, or someone's child is hitting a milestone and yours is not, doesn't mean anything about you. When you make it mean something about you or start blaming or shaming yourself, you open yourself up to suffering.

You are enough

As a raregiver, it can be easy to fall into the pattern of wondering if you are doing enough. Perhaps you have just discovered that a second person in your family has a Rare diagnosis. Remember, each child is different and their Rare disease will present differently.

Refrain from feeling guilty and thinking that you "did this" to two of your children. It’s not true.

Fault versus responsibility

There is a difference between being at fault and taking responsibility. The fact that your child has a Rare disease is not your fault, and it is your responsibility to take care of them and it's a heavy responsibility.

Receive

Give yourself credit and receive what you are doing to support your Rare child, and all the ways that you do show up and take responsibility. Stop the internal war.

Pause

You might want to pause and ask yourself what you can do to make your life easier. There might be a simple fix to a situation, and if you can solve a minor issue for a few dollars, just do it. Take action to decrease stress.

Be curious

When you can be curious in your life, rather than comparing, it will be easier for you to allow Things to be different yet OK as they are.

Move with curiosity as you relate to the people in your life.

Letting them be as they are

As a raregiver, it's likely that you have radically accepted your child's Rare disease. It makes sense that you would feel sad or angry when other people compare your Rare child to other children.

Each child goes at their own pace. Your child will do what they can do when they can do it.

Invisibility

It can be extra challenging when your rare child has an invisible syndrome. And when someone who doesn't understand that your child has a rare disease, it might feel like a scab that has been healing, is ripped off by someone's judgment.

Radical acceptance

If you have come to the place of radically accepting of your child, be steadfast in that. Be stable in your knowing of what you know. 

Radical acceptance gives rise to internal equilibrium or peace.

It is wise to focus on what your child can do today. Celebrate it and practice acceptance on a daily basis. 

You are invited to practice radical acceptance for yourself. ❤️💜❤️

Coming up this week: The Places we Go When We Search for Connection

The goal of Angel Aid is to be a place of community and connection. Often the Rare Journey feels like it is laced with loneliness, insecurity, and invisibility. Yet there is the possibility for connection and belonging. Let’s hold space for one another as we feel the understanding that we inherently have for each other. 

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