WHAT REALLY MATTERS TO YOU
💜 What really matters to you? How do you orient your life and what are your guiding values? An hour Tuesday women's empowerment circle we looked at what influences us, how do we make decisions and where did these come from…?
Honesty
Honesty was one of the essential values we discussed. One of our group members spoke about how years ago when her three Rare children were sick, she did not talk about it. She was hiding what was going on from people because being honest invited people to offer unwanted advice -- this happens often unless you specifically ask someone to refrain from giving advice. People are trying to be helpful and you do not have to accept their advice. As a Raregiver, it's useful to be discerning about the degree of honesty you offer in any conversation.
We also talked about how being honest with oneself is a constant invitation. When you are honest with yourself, there will be consequences and very likely there will be actions to take. In other words when you're in denial, you don't have to deal with things. Denial postpones the need to make certain decisions which can be very delicate, especially when these decisions pertain to your Rare child.
Be proactive
Honesty can support proactivity, which can be very helpful for you and your Rare family. There are things that need to be done in the moment you are honest with yourself about the consequences for your Rare child who has arthritis at 17 years of age, you realize that by allowing them the opportunity to live, play and go on the swings is a risk that you are willing to take. If your child's bone structure is fragile, fractures are going to happen and the question is not if they will happen but rather, when? One Raregiver spoke about how she would much rather have her son fall off a swing because at least he was enjoying himself and he was happy when fractured something.
Fear
Fear is the gatekeeper. If you live in fear and worry, you are likely not living in the present. Sometimes fear and worry can spiral into what is called catastrophic thinking. You will know that you are caught in a spiral of catastrophic thinking when you are wondering "What if this happens…,What if that happens…And then what if my Rare child gets an infection…?” The truth of the matter is that you cannot stop the inevitable. What you can do is surrender to the unknown and trust. As an experiment, you might surrender trying to control all of the variables and trust something deeper.
What would your life be like if you surrendered and opened to the infinite possibilities that are available in each moment?
Coming up next week: Adjusting To A Diagnosis (Sort Of…)
Even while raregivers are waiting for test results, coordinating care with healthcare providers, and navigating insurance, they still have to find ways of managing their loved one’s symptoms. It’s very tricky territory because even with genetic testing, your loved one’s disease may not have a clear path forward. Recognizing and acknowledging that treatment might not be available or effective whilst also trying to coordinate care for loved ones places a tremendous burden on raregivers to be a “hero.” But being a hero on a daily basis can easily lead to fatigue and overwhelm. Come share your experience and learn new coping skills to support you.
Please Join Us💜
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/88974713173
We look forward to being with you soon. 💜💜💜