When stress hits—especially if we’re not resourced or haven’t tended to our own self-care—it’s easy to slip into old patterns. Maybe we shut down, lash out, numb, or simply go through the motions. These responses are not failures rather they point to being depleted. They are signs that we are in need of support. They are invitations to return to ourselves.

That’s why spaces like this circle matter. By simply showing up, week after week, we create a rhythm of checking in, of being supported, of remembering ourselves

Observed each year on July 22, National Fragile X Awareness Day shines a light on Fragile X syndrome (FXS)—the most common inherited cause of intellectual disability and a leading known genetic cause of autism. For many families, this day is not only about raising awareness but also about honoring the strength, resilience, and love that define their caregiving journey. At Raregivers, we stand with you, offering support, education, and resources every step of the way.

What happens when things are uncertain?Where do you go when everything feels like just too much?When you’re caring for a child with a Rare disease, uncertainty becomes a daily companion. The unknowns can pile up fast, and with them comes a very specific kind of emotional fatigue.

There are places inside us we only go when we’re hurting. Places where words falter and the heart feels unbearably heavy. These are the dark corners of our emotional landscape—where grief, fear, and a deep, aching anguish live. As a Raregiver, these places may become familiar. Not because you choose them, but because the path you’ve been given leads you through them again and again.

When we fall into comparison, we suffer. Comparison was the subject of our Women's Empowerment Circle this week. It can be very challenging, not to compare your Rare child to other people's neurotypical children. Comparing often leads to feeling less than or not enough and it may take you down a rabbit hole of self-deprecating thoughts.

For many caregivers, holidays can be complicated—and the Fourth of July is no exception. While others are enjoying fireworks and carefree celebrations, caregivers of those with rare, chronic, or complex conditions often find themselves feeling out of step with the world around them.

At Raregivers, we see you—and we’re here to support you through moments of joy, overwhelm, and everything in between.

As a Raregiver, it can be easy to lose yourself in caring for your Rare child or children. You may experience a radical shift in your perspective on life and being the parent of a Rare child becomes your primary identity. 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.

Prader-Willi Syndrome (PWS) is a rare and complex genetic disorder that affects approximately 1 in 15,000 to 1 in 30,000 people worldwide. Often diagnosed in infancy, PWS requires lifelong care, support, and specialized resources for both the child and their family. At Raregivers, we recognize the challenges of caregiving for a child with a rare disease like PWS and are here to support you every step of the way.

Anticipatory grief is a very tender topic which invites you to be with hard feelings, to sit, breathe and open to everything that is arising. In moments when you feel overwhelmed by the depth of feelings that is washing over you, ask for help. We are here to support you.

Father’s Day is a time to honor the strength, sacrifice, and love of dads everywhere—but for fathers of children with rare diseases, the day holds deeper meaning. These fathers walk a path filled with medical complexities, emotional strain, and often unseen acts of caregiving. At Raregivers, we’re proud to stand beside every dad who shows up, day after day, for their child with a rare condition.

Having a Rare child radically changes you and your world, and some of your old friends will not be able to relate to your current life. It's possible that they won't know how to act around your Rare child or they may innocently make an inappropriate or hurtful comment about them. How do you communicate your needs to these friends and what if anything may be getting in the way of being honest? There are many benefits to having old friends, and there is a deep benefit of being in community with other Raregivers. This is what we are here for.

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.

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.

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.

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.

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.

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.

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.

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.

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.