Finding peace in the unknown
This week’s Rare Family Dynamics support group felt like a reunion with old friends returning to the fold. It was wonderful. The topic was, he places we go when things aren't what they seem.
We discussed how to hold the full range of what is happening in your life, even when it feels incredibly challenging and out of control. There is the option of finding humor and irony, in whatever shows up.
Our minds tend to see things in black and white, and when we go beyond this into the gray area, life gets easier and solutions to medical challenges begin to present themselves. Things may become lighter.
Managing people
As a raregiver, you are the manager of the people who help care for your rare child in life, and also at school. You might have a thought, "mommy can always do it better." This is true, and mommy cannot do it all.
It's useful to contemplate what's reasonable to expect from your Rare child's teachers and aides. Sometimes you might feel like they are not doing a good enough job. Slow down, gather more information about what is actually happening, and recognize that these people are doing their best.
Pause
If you're feeling up in arms because you think your child is getting subpar treatment, pause and feel. You need to slow down and experience your emotions before communicating with teachers or school administrators. When you come from a place of calm, rather than writing a very strongly worded and reactive email, you will get a better response.
Recognize that no one is going to care for your child the way you do. Ask yourself, "what is good enough?”
Guilt
Maybe you are feeling guilty about the fact that you did not see certain symptoms that your Rare child is having. Do your best not to lay a trip on yourself. If you're having thoughts like, "I should have seen this. I should have known,” recognize that you are doing your best and refrain from shaming yourself. Be kind to yourself.
Managing overwhelm
As a raregiver, you might be spending a fair bit of time feeling overwhelmed which makes sense because you have too much to do.
In these moments, find ways to disengage.
* Allow yourself to not do things..
*If someone is making a request of you, set a verbal boundary. If you are overwhelmed, it's very likely that you will say something that you might regret.
* Take space.
* Walk around the block and break your state.
* When you are swirling around in your emotions, things get very cloudy. Slow down and metabolize your feelings.
* Pull out your journal and write about your feelings, experience them in your body as you go.
* Practice self-compassion.✨🙏✨
Pregnant after RARE
For anyone who would like to read Laura Will’s exquisite article on being pregnant after RARE, you can find it below:
Coming up this week: The Places We Go When We Compare
Come share your fears and find that you are held in them and supported to move beyond them with other Raregivers. Let’s explore comparison and how it affects our self-worth. Beware comparison, your future can be shaped by comparing yourself to others. You are enough just as you are. Please join us.
