NOTICING CHANGE
This week in our Self-Care Tuesday group, we looked at the first stage on the emotional journey map, which is "noticing changes.” The Raregivers journey often starts with a gut feeling like something is not quite right which leads to questions. What's wrong? What's going on? How do we fix this? Who do we talk to?
The reality is that as a Raregiver, you will have more questions than answers and answers can be incredibly hard to come by. You may feel unsupported by the medical community or perhaps even by your relatives or friends. It's painful to know what you know as a mother and feel that others may be thwarting your efforts to get support services for your rare child. Raregivers often experience anger, sadness, and disappointment when met with a lack of information, empathy or understanding.
Denial
When you first noticed changes, your initial reaction may have been denial. Perhaps your faith supported you to feel like everything was going to be OK and you believed your Rare child was going to be healed. Coming to terms with the fact that there are no cures and that your Rare child is going to face increased symptoms and a decline in health is very painful. We want to see our children grow and thrive and sometimes we have to let go. We can hope for a cure and we need to surrender to the truth of what is.
Sips of self-care
One thing you can do as a Raregiver is take sips of self-care to expand your resiliency and your capacity to show up for everything that is needed, including maintaining your own health and well-being.
You might feel like you don't have time for self-care, and you do have time for little sips of things that nourish you like:
Slowing down and pausing for a minute three times a day
Taking a five minute walk or doing five minutes of stretching
Taking a deep breath and seeing the beauty of the trees and the sky around you
Letting yourself be nourished by family and friends by lingering in a hug for a few extra moments
Sitting and reading a book for 10 minutes
Massaging your feet or using essential oils on your body
These things are doable. It's just a matter of weaving them into your daily life. First, you must recognize that you're worth it because you are.
Acceptance
Acceptance is a practice that will serve you well in your life as a Raregiver. You will be invited to accept the changes that your rare child is experiencing alongside lots of little losses and also witnessing your child experiencing pain.
When you can accept what is, you are free to show up and do your best. It is wise to accept that you will not be able to do everything you want to do for your child. Surrender your intention to be a superwoman and simply be yourself. You are enough.
Coming up next week: Your Natural Strengths Bring You Joy
Today’s session is about uncovering your natural strengths and recognizing that by engaging our inherent gifts you gain access to joy. When you’re doing the things you love to do, you’ll feel more connected to yourself and your Rare child will feel your joy. Joy is a connector! Come connect to what brings you joy. Together we will find ways of bridging things we love into simple ways of engaging with your Rare child. Let’s meet and support one another to move through life with more joy.
Please Join Us
You may not realize how much you need the Angel Aid community until you find it.
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We look forward to being with you soon.
