Balancing Life Includes Fun

This week in our Rare Family Dynamics session we had a rich discussion about adjusting to change and how to communicate the hard things. As a member of a Rare family, you are navigating lots of changes, which means there will be hard conversations. It’s important to have fun in your life to balance the challenges that you are dealing with.

Maybe you feel like you are always busy, or even too busy to have fun. This is simply not true! It’s essential to balance how you fill your cup with rest and fun.

Ways to have fun

We brainstormed some ways to have fun, and we came up with: axe throwing, attending a rage room, miniature, golf, karaoke, dancing, singing, or watching a comedy show.

Prioritize having fun in your life. Fun helps with your creative juices. Creativity is essential for coming up with out of the box solutions to difficult problems.

Let Go of Mom Guilt

It can be hard to ask for time to yourself and maybe you feel guilty because you’re taking time away from your Rare child.

Remember, “Time for yourself is not me first, it’s me too.”

Many raregivers struggle with feeling guilty. Maybe you struggle with feeling like you matter or that you are a person too. You deserve compassion and love.

Prioritize Self-care

Self care is important and it is actually vital for you so that you will be able to take care of your Rare child and your family.

It can be easy to skip over yourself and you may be under a lot of stress. Sometimes friends or family members may minimize your personal challenges because your Rare child’s challenges are worse. In these instances, it’s really important to speak up. Ask for what you need. 

You might want to put a sticky note up on your wall that says, "I matter too." Read it. Say it out loud. It's the truth. You matter. 

Coming up this week

Shifting Responsibilities: The Mechanics of Setting Boundaries

Parenting your Rare child means navigating dynamics with your extended family. Oftentimes, your mother or sister will not understand the nature of your child’s disease or what it’s like for you to live as a Raregiver. Misunderstandings may run rampant along with denial that there even is a medical issue with your child. How do you gracefully set boundaries with them?

You may find yourself comparing your Rare child to your neurotypical nieces and nephews when you see photos of them hitting milestones that your Rare child may never hit. Learn how to set boundaries with yourself and others. Please come and share your wisdom with our wonderful community.

You Belong

As a Raregiver, you belong here. We gather from across the world to support each other. You are not alone. Come as you are.

Your presence is a contribution.

Zoom Link: Click Here

With Blessings,

Padma