Love Yourself Through It All

This week's inquiry in our Rare Family Dynamics support group centered on how to keep loving and caring for yourself as your Rare child needs more from you.

It can be easy to lose yourself in caregiving. The possibility is to lean into your mind-body connection as a support for staying present with yourself and your needs.

Multitasking

First of all, it’s good to get that you don't need to do everything at once. Remember to slow down, notice, and absorb the reality around you. Take in the beauty. If you're going too fast, you will miss it–beauty is nourishing for the soul.

Maybe you're traveling across the country and trying to manage your child's care, get prescriptions refilled, and schedule doctor’s appointments.

Think about it, just because you can multitask doesn't mean you should

One of our participants reflected that her mind becomes anxious when it's not multitasking, thinking that she should be doing something else while she takes care of her family. What if you were to be simply present with your child in the moment that you are with them? 

Try this: Pause all “extracurricular activities” and do one thing at a time. 

Be mindful

Mindfulness will support you to remain calm during stressful moments (and there are lots of them). It's common to have PTSD when your child has had multiple surgeries that have not gone well and you are approaching another surgical procedure.

Slow down, breathe, and have awareness of what you are thinking. You can choose to have agency over your thoughts, especially when they are leading you down dark hallways into scary places.

This quote says it well, “In the spirit of Victor Frankl: between stimulus and response, there is a space, and  in that space is our power to choose, and in that choice lies our growth and freedom.”

—Dr. Susan David

Interrupt the pattern

As soon as you realize that you are scaring yourself or others, you can interrupt the habit pattern.

Smile when you don't feel like smiling or open your arms wide, this will help you shift the negative thinking to positive thinking.

Smiling makes you feel happier, and the people around you will respond to your happiness.

Be responsive

When you are present and put your self-care on the front burner of your awareness, you will be able to reroute negative thoughts, and before long, you will find that you can instantly shift your thoughts.

Self-compassion

Being present and aware takes practice. So offer some self-compassion in the moments when you're reactive and impatient with your Rare child.

You are a work in progress. Being mindful will uplift and sustain you on your journey.

Coming up next week: Anticipatory Grief & Permission to Feel

On your journey as a raregiver, you will eventually grapple with how to deal with the end of your beloved child’s life. This may involve grieving while still caring for your Rare child. This experience is called anticipatory grief and can last for several years. Receiving compassionate emotional support during this time is essential and finding opportunities to discuss the journey of death and dying with others will lessen the burden. Please join us for a tender-hearted conversation. 

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We look forward to being with you soon.