Padma Gordon

Setting boundaries is a form of self-care. Sometimes in your life, there may be people who try to pull you into grief and worry when your Rare child is about to head into surgery. They are trying to be helpful and empathic and the truth is it doesn't serve you. Set a boundary when someone in your community or family constantly talks about how angry they are at your life.

Padma Gordon

We began the second quarter of our Rare Family Dynamics Group with a discussion about gratitude. Even when you are challenged, there are things you can be grateful for. Gratitude can shift your mood and your perspective relatively quickly. It is a matter of. Where are you put your attention at any given moment?

Pamela Russell

All of us have a superpower called, “I can rewrite this story…” It’s one we often lose sight of or forget about completely. Instead of embracing this superpower, we can find ourselves in comparative suffering. It can go one of two ways: Reinforcing our own narrative around our suffering, digging deeper into it OR minimizing our experience in light of the pain other people are experiencing.

Padma Gordon

This week we touched upon a very tender topic, looking ahead at the possibility, or the eventuality, that your Rare child will depart this world before you do. This is an incredibly hard thing to contemplate.  What comes up for you even hearing this? How do you stay steady in the face of this?

Padma Gordon

The nature of emotions is that when met with an open heart they pass. I have never met an emotion that was not temporary. And to be able to experience the pain of the harsh reality that your Rare child will likely leave this world before you do takes a lot.

Pamela Russell

If you’re in the Rare Community, it’s essential to nurture your mental wellness and develop the fortitude to respond to all the family-building challenges that come your way.

Pamela Russell

We talked last time about a couple of ways that, by using mindfulness techniques, we can improve our perception and assist in easing the stressors of our world.

Padma Gordon

We had a wonderfully robust session this week in our Rare Family Dynamics group. We explored how to stay connected to yourself as you tend to your Rare child. We looked at what it means to be internally or externally located with regards to where you put your attention.

Padma Gordon

It can be helpful to pause for just two minutes. You might set a timer to go off once an hour and when it does you close your eyes and pause in meditation or prayer for two minutes. This is a way of training yourself to be in the present moment.