REAP WHAT YOU SOW
This week in our Tuesday Women's Empowerment Circle we reflected on what we’d learned over the last few months and harvested the fruits of our journey. Creating a sustainable structure in your life as a raregiver means being intentional and present. It's important to take sips of goodness throughout the day. Embrace the sweetness of the ordinary which might look like a moment where your Rare child is smiling or seeing the colors of the autumn leaves on the trees and how they've changed.
Routine 💜
For some of us, routine may seem dull and for others routine and structure comfort us like a warm blanket. When you are a raregiver, it might seem like the days are long and the years are short. Every day you have many tasks and lots of responsibility. You need a plan. It is the plan, as they say from which we will deviate…However, when you have basic structures in place like childcare or maybe a personal trainer who comes to your house, it can make all the difference.
Embrace what is 💜
Experiences that have an element of challenge can also be encouraging. It may serve you to focus on the positive aspect of what is happening. Regardless, every situation is an opportunity. Embrace your feelings, breathe and pause. You have what it takes to navigate through any apparent roadblocks, and move into acceptance. Many raregivers go through periods where they feel like things are "just too hard." Things may actually be too hard and you may have too much on your plate and be in need of some assistance. However, you may also be collapsing under the weight of your thoughts. When you are feeling overwhelmed, take a breath and see what's true for you.
All or nothing 💜
There may be moments where you feel like if you can't do it all, you'll just do nothing. This is not sustainable. Do one thing. It makes a difference. Just do one thing at a time and remember, it is consistency that creates true change. Take the time to receive your progress. It's like if you lift weights regularly over an extended period of time you will see results. Take a moment to look in the mirror and acknowledge your progress. Love what you see in the mirror. Loving yourself is true self-care. As a raregiver, you want to be strong so that you can care for your Rare child.
Coming Up Next Week: Noticing Changes (Stage 1, Emotional Journey Map)
From the appearance of first symptoms to the point of diagnosis can be a long, painful journey for raregivers. The raregiver’s journey often starts with a gut feeling—something’s not quite right—that leads to questions. What’s wrong? What’s going on? How do we fix this? Who do we talk to? Let’s come together and talk about what it was like when you first noticed something wasn’t quite right with your Rare child. Getting clear on what matters most at the Noticing Stage is very important as raregivers have limited time and resources to find diagnostic answers and solutions. Prioritizing what matters most (which will be unique to each family) will help to streamline decisions and create a platform for moving through the stages of the raregiver journey. Coming to share your personal experience with others who can relate to you in a disease agnostic environment can be deeply healing.
Please Join Us
You may not realize how much you need the Raregivers community until you find it.
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We look forward to being with you soon. 💜💜💜