Padma Gordon

This week in our Rare Family Dynamics Workshop, we stepped into very tender territory. We explored what it is like to know that increased care for your Rare child is coming. We contemplated what may arise in the face of this.

Padma Gordon

When you first receive your child’s diagnosis, you might notice that you and your team have very different ways of processing it. You need to bridge the gap and bond together against the problem. It’s important to include your partner in the process of discovering what is needed for your child.

Padma Gordon

Communication is a high art and can be quite challenging. You are the expert and no one knows your Rare child as well as you do. You are the head of your care team.

Padma Gordon

Friendships can become complicated once you receive a diagnosis. Some friends will stay the course and others will leave. This is a matter of capacity. We talked about the qualities of a good friend and the elements of a nourishing friendship.

Padma Gordon

This week we looked at how to navigate misunderstanding, denial and comparison. We shared our wisdom along with what we have found to be supportive and challenging. If you are a member of a Rare family, you belong here.

Padma Gordon

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.

Padma Gordon

This past week in our Rare Family Dynamics workshop we explored the impact having a child with a Rare disease has on the members of your family. We looked at how having a Rare child invites emotional and spiritual growth.

Padma Gordon

Before you read this, please take a few deep breaths, close your eyes and find your center. Remembering or hearing about someone else receiving a diagnosis for a Rare disease can be triggering.

Padma Gordon

We discovered that this change may include a struggle to accept your new role. Do you find yourself wrestling with what it is? If so, this is very common. In most cases, Rare caregivers make the choiceless choice to take care of their Rare child. Who can do it better than you?