Making time For You
When your Rare child needs full-time care, your life changes a lot. It can be really tricky to include self-care when you are doing full-time care. This was the topic of our Rare family Dynamics Support Group this week.
You matter
As a raregiver, it is important to remember that you matter. Oftentimes, doing things for yourself falls to the bottom of the list. Or sometimes as a caregiver you lose yourself completely in your devotion to taking care of those you love. Take a moment to be with yourself.
Practice this
Think about it as if you're keeping half of your attention inside as you remember that you have needs too. With each inhale, follow your breath in and down. Feel how the breath gently touches you on the inside.
Jump on the bandwagon
You might need to find and re-find yourself over and over, metaphorically, hopping back on the bandwagon of finding your connection to yourself again and again.
Finding yourself might look like:
Grabbing 10 minutes on the sofa with your favorite book
Taking five minutes to lay on the floor and stretch out your back
Spending a few minutes focused on your breathing
Going for a short walk
Obstacles
We also talked about what gets in the way of including yourself in your schedule. One of our participants said "I am the obstacle." It's the idea that you're fine and don't need anything which is not true; you do need things. A sustainable life is a life in which you take time to tend to yourself.
Include yourself in your vision of the future
As a raregiver you’ve had to let go of a tot starting from the moment you got the initial diagnosis. Prior to receiving it you may have thought to yourself, “I’m having my kids so young, I will have time later on to do the things I want to do and I’ll only be 40 years old. When you receive the diagnosis, that all fades away. You realize that your Rare child may never be able to care for themselves. You may wonder if you will ever get to make choices that include your needs and not just your Rare child’s.
You are not just a mother or a father. You have needs and sometimes your needs will apparently inconvenience others and it’s okay. Trust taking care of yourself is a foundational piece of taking care of others.
Coming Up Next Week: Self-Care: Losing Yourself and becoming Resourced
As a raregiver, it can be easy to lose yourself in caring for your child or children. You may experience a radical shift in your perspective on life and your identity as other than the mother of a child with a Rare disease may disappear. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list.
Priorities shift and you dive headlong into learning everything about your child’s Rare disease as well as managing their care each day. Please join us for a conversation with other Rare caregivers who are discovering ways to care for themselves and their Rare family. Bring an open heart and trust that you have wisdom to share.
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.
