True Friends Are Gold

Today in our Rare Family Dynamics group, we talked about what it means to be a true friend to yourself and others. When you have a rare child, long-standing friendships can change in an instant and things can get awkward. Here are some nuggets from our conversation.

True friends

True friends are people you can text or call after months have gone by and it's like no time has passed. They don't judge, they know how to just be with you. They listen, understand, ask questions and hold space for the things you want to share even when they feel uncomfortable. They reach out and offer love and compassion when it's needed.

Offer this to yourself

Being a true friend to yourself means offering yourself all of the things mentioned above plus interrupting any judgments or indulging in the habits of self-flagellation.

Think about it, if you talked to a friend the way your inner critic talks to you, they might wonder if they want to continue to be your friend. Offer yourself compassion and kindness. You’re worth it.

Making new friends

Later on in life, making new friends can be challenging. Maybe you meet someone who is on the same schedule as you are at the local swimming pool. How do you move from casual conversation to a more meaningful connection? Be vulnerable, take risks, acknowledge if you feel awkward, and be honest. Relating in this way leads to deeper intimacy, which is rewarding for everyone.

Introvert or extrovert

One person in our group shared that her rare daughter has helped her to be calm and more extroverted, because she is unabashedly herself! It's great to be inspired by your rare child to step forward and share more of yourself if you tend to be more of an introvert.

Awkwardness

Maybe you've experienced your oldest friends or people you thought you were really close to who all but disappeared once your rare child arrived. Maybe you have friends that didn't come around at all once they were born? They were scared and didn't know how to relate to you and your rare child. And, it is hurtful when you've been there for them throughout the years, you've known each other.

Collusion is pollution

True friends do not collude with you, although they do have empathy for you. It's like if you're upset, and your friend eggs you on indulging you in your upset or throws gasoline on the fire, this is not true support. True support creates stability in you rather than agitation.

True friends sit quietly with you and hold your hand when you need it. They invite you to have your feelings and breathe.

Friends who understand

Sometimes, old friends from high school or college don't understand your present day life as a Raregiver™. Here at ANGEL AID you have a chance to make new friends who know what your world is like, who understand the devastation of receiving a diagnosis, who get what it's like when other children are in their ballet, recitals or later on looking at colleges. You belong here.

Coming Up Next Week

Team Play in your Rare Family: Collaborate Communicate, Listen and Validate

Being in a rare family means you are on a team. You are in it together and share a common vision and goals. This includes relationships with your partner, children, healthcare professionals, friends, co-workers, etc.. Together we will explore the elements of a great team. How can you be the best team player possible? What does it take to lead your team? In order to support your rare family and your rare child, you need to have a healthy team. Please bring your experience leading your family. We will share our collective wisdom and support one another. We are on your team. Let’s cheer each other on!

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We look forward to being with you soon.

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Navigating Life as a Patient Expert: Embracing Change and Finding Strength