
BLOGS
A Roller Coaster of Emotions
Being a Raregiver is inherently vulnerable. It can be vulnerable to even acknowledge certain parts of yourself, to allow them to surface and be held with love. These are the places calling for self- compassion, love and validation. As a Raregiver, you have lots of tender places as you contemplate the future which may include how your Rare child will fare after you're gone or what it may be like to lose them. Mortality is vulnerable. Allowing yourself to feel your own mortality and your fear around it will create room for you to rest deeper into yourself.
How to Be a Good Team Player
The first thing needed for team play is to be on your own team and be connected to yourself so you are able to notice what you need from moment to moment. First, be the leader of yourself. As a raregiver, you coordinate lots of different people from family members to medical professionals, and you need skills to be an effective leader. These may include being a good listener, offering validation, bringing curiosity and refraining from being critical to name a few.
Boundaries & Self-Care
We recently had an amazing Women's Empowerment Circle. I was reminded of how incredibly supportive it is for raregivers to gather together, especially when some have children entering kindergarten while others have children who have already graduated high school. When we come together, we share our hearts and the wisdom gained from our life experience. You can trust that you have wisdom to share. Here are some nuggets from our circle.
Appreciation Creates Connection
Notice the little ways you show up for yourself which may include attending a support group, exercising, taking a shower, putting lotion on your face and body, feeding yourself a good meal or connecting with someone you love. It all matters because You Matter. Your presence is a gift you can give to yourself. From here, you can offer your attention and appreciation to the people you love.
Creating Balance
When you look at the wheel of life, which points to how you're spending your time, what do you notice? Are you getting enough social connection, alone time, exercise or spiritual fulfillment? It can be especially challenging for you as a Raregiver to create balance in your life since so much of your focus is on your Rare child or children. Here are some reflections on how you can create balance in your daily life one small step at a time.
Essential Self-Care Tips
As a Raregiver you are over extended and have very little time for yourself, so in order to take care of yourself and maintain your health and well-being, you need to make yourself a priority. Putting toward the top of your list can be challenging. It’s a different orientation for you since you spend the vast majority of your time focusing on your Rare child and the other members of your family.
Coming Back To Yourself
Raregivers get less time alone and less quality time with the people they love. These constraints along with decreased time for self-care often lead to an unsustainable structure that will eventually collapse. It is important to engage in the things that sustained you before you were a raregiver.
Navigating Without a Map
The truth is you are doing so much in your life, including researching your child's Rare disease, tending to your home, your family, and of course, giving special care and attention to your Rare child as you learn how to manage their symptoms. You owe it to yourself to put self-care on your list.
You Are a “Shero”- And You Need Support
What does is it like to receive a diagnosis and enter into a whole new reality with many unknowns, a lack of information, as well as a lack of treatment? It is overwhelming. As a raregiver, you are doing it all and being it all for your Rare child and everyone in your family. You are Shero, a superwoman and you need support.
Sustainable Self-Care: Nourishing Your Body
There are many ways to nourish yourself and one of the primary ways is with food. Are you tending to how you eat? Are you listening to your body? Do you nourish yourself regularly or are you skipping meals and waiting until late afternoon to eat your first meal? If so, a practice to support you in being deeply nourished is the practice of mindful eating.
Taking Care of Yourself as a Caregiver
Taking care of yourself as a caregiver is essential—not just for your well-being but also for the quality of care you provide to others. Here are some key benefits of prioritizing self-care:
The Hygiene of the Soul: Building a Daily Self-Care Practice
In today’s busy world, self-care often gets pushed aside—but tending to your inner well-being is just as important as physical hygiene. Renee Schwan explores how a simple daily practice of mindfulness, breathwork, and body awareness can help clear stagnant energy, release stress, and bring you back to a grounded, peaceful state. Start small, stay consistent, and watch your inner world transform.
THE BEST APPS TO SUPPORT YOUR MENTAL HEALTH
Christopher Velona
In today’s fast-paced world, mental health has become just as important as physical health. Fortunately, technology has provided us with a range of apps designed to help manage stress, anxiety, depression, and overall mental well-being.
HOW MEN CAN EFFECTIVELY DEAL WITH STRESS
Christopher Velona
Stress is a natural part of life, but for many men, dealing with it can be a challenge. Societal expectations often pressure men to be strong, stoic, and self-reliant, which can make it difficult to acknowledge stress
THE MANY BENEFITS OF QI GONG & SELF CARE
Renee Schwan
Qi Gong is an ancient Chinese practice that combines movement, meditation, and breathing to improve physical and mental health. Translated from Chinese, qi (pronounced chee) means energy, and gong means cultivation or discipline.
HEAD, SHOULDERS, & FACE YOGA
Renee Schwan
Yin energy is yielding, passive and slow. Water traits are assigned to yin. The counter balance is yang energy. In yoga, yin is assigned to gentle slow movements aiming to unlock the body and mind.
GROUNDING THREE PART BREATH
Renee Schwan
We will continue to explore the importance of cultivating a breath work practice to regularly ground into the body.
SOMATIC SOUNDING
Renee Schwan
Soothing sounding vibrations to calm the body and relax the mind. Some believe it is impossible to think and hum at the same time.
SENSORY SELF CARE EXPERIENCE
Renee Schwan
Slowing down and taking time out of the day to connect to body and breath is essential in maintaining balance and overall well being. This week's focus is on the sensation of touch, through guided meditation, breathing exercises, eye stretches and hand massage, we connect the mind to the body in the present moment through intentional focus on our senses.
SLOW DOWN, TUNE IN, & FLOW
Renee Schwan
The power of breath, combined with our voice and the ancient flow of qi gong soothes and restores. The ability to slow down our breathing and become conscious of it is an impactful tool we can take with us everywhere we go.
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