Noticing Changes & Staying Calm
The focus this week in our Rare Family Dynamics session was on noticing changes. As you notice changes in your Rare child’s condition, your life may become more stressful. In these instances, it is useful to know how to stay calm and settle your nervous system.
Self-care
There are the day-to-day things that you can do to maintain your health and well-being, like meditation, prayer, exercise, and positive self-talk. Be kind to yourself.
Nervous system regulation techniques
2 things you can easily do to calm your nervous system:
Place your hands gently on your face and hold for a minute. Just as you would hold your child’s face or a dear friend’s, you can hold your own. You are connecting to the vagus nerve which sends a signal that it’s ok to relax.
Hold your thumb. Gently wrap one hand around the thumb on the other hand. Take several long, slow, deep breaths. Inhale through the nose and exhale through the mouth.
Boundaries are also supportive. It’s incredibly hard to see our children in pain and yet we are useless to them when we merge with their pain. Staying close to them while remaining in your own space bubble is key.
Hold your children close and give them space, trusting that they have their own soul journey. They have their own destiny, which you cannot control as much as you would like to.
Stay in the now
Sometimes what can happen when you notice a change in your child’s condition is that you begin to think about all of the other changes that may happen down the line. These are known as future trances and can be anxiety provoking.
You might wonder, “If I can barely lift my child now, how will I lift them when they weigh 20 pounds more? They will need bigger diapers and they will have bigger poops. How will I handle it?”
The only thing you can do is recognize that you are strong enough to handle what is happening today. Trust that the future version of yourself will be able to handle whatever shows up. You’ve been navigating it all along. You are doing it!
Be your own cheerleader
Train your mind to talk to yourself in positive ways. It takes practice. You can say to yourself, I will figure this out when I have to. I’ve done it all along.”
Trust your young adult Rare child
Being a raregiver requires a ton of trust. For example, you need to trust that your Rare child can handle driving on the highway even though a few months back, she had a seizure while driving. You need to let her live her own life. This requires a leap of faith. All you can do is trust yourself and live day by day. Your Rare child has their own path which is different from yours.
Acceptance
Maybe you are noticing changes and even after four years, you still have no diagnosis. What is possible is to accept that you are living in a Rare family. This is a relief! Acceptance is a daily practice. It is a habit rather than a destination. Slow down, connect with the moment, and enjoy your life as it is.
Coming up this week -- Vulnerability: A Pillar of Authentic Communication
This week we will explore the ways being a raregiver renders you vulnerable. Raising a child with a multitude of physical vulnerabilities points us to the vulnerable nature of the human condition. Being able to be transparent about your experience takes courage. Discover the strength in vulnerability and how to skillfully communicate your feelings and needs.
You belong
As a raregiver, you belong here. This past week we gathered from three continents to support each other. You are not alone. Come as you are. Your presence is a contribution.
Zoom Link: Click Here
With Blessings,
Padma
