Acceptance: Learning to Live With What Is

By Padma Gordon

Acceptance is not a single moment. As caregivers, we move through many stages of acceptance over the arc of our caregiving journey. We may accept a diagnosis, then struggle to accept what that diagnosis means for the life of our Rare family member. We may notice milestones that are not being reached, abilities that are changing, or a decline we desperately wish we could stop.

We may accept something one day and resist it the next. This is human. Acceptance can be challenging because we love deeply, and we want to do everything possible for the person we care for. We find ourselves asking, How much do I push? How much do I allow? What is mine to change, and what is not? And how does all of this impact the rest of our family, including siblings, partners, and extended family? There are so many layers to accept, and each one carries its own grief.

One of the hardest things to accept is that we can only make the decisions we are capable of making at any given moment. We make decisions with the information, energy, resources, and capacity we have available to us at the time. Sometimes those decisions have consequences we wish were different.

This is where giving ourselves grace and space becomes so important. You only know what you know. To become caught in the inner critic and endless self-rumination is to suffer all over again. Acceptance asks us to acknowledge what we have done, what we have not been able to do, and the decisions we have made, without punishing ourselves for being human.

One of our group members shared that acceptance can feel synonymous with giving up. When you love someone with a Rare disease, there can be a powerful drive to keep searching, keep advocating, keep pushing, keep trying. Acceptance can feel like surrendering hope. Acceptance is not giving up.

Acceptance is recognizing what is here, including what we don't like, while still choosing how we want to meet it. Grief weaves itself through this process. Grief needs to be felt. It needs space to wash over and through us. We may cry, shake, dance, walk, breathe, rage, pray, write, or simply sit with the ache. We can feel our feelings without judging ourselves for having them, trusting that they will move and change over time. When someone we love is dying, acceptance may eventually mean recognizing that it is time to let go, even when that feels like one of the most brutal decisions we will ever face.

Acceptance is a choice, and it is something we learn to live with, again and again. It does not mean we stop caring or stop advocating. It means we stop wrestling with reality long enough to be present with the life that is here. We can accept what is possible and what is not possible. We can make room for grief, love, anger, joy, fear, and uncertainty, all of it. And perhaps most importantly, acceptance gives us back our agency. When we stop spending all of our energy wishing that reality were different, we have more energy to meet what is actually here. In that space, something opens. We can breathe, feel and choose to live. In this way, acceptance can become a profound form of freedom.

Coming Up On September 15: Caregivers Island: Losing Yourself, Finding Yourself (Stage 6: Finding Meaning)

As a caregiver, it can be easy to lose yourself in caring for another’s needs and you may experience a radical shift in your perspective on life when becoming a caregiver is your primary identity. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list. Your priorities shift and you dive headlong into learning everything about your child’s or another loved one’s disease as well as managing their care each day.  Join us for a conversation with other caregivers who are discovering ways to resource themselves as they care for their families. Bring an open heart and trust that you have wisdom to share.

Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.

You may not realize how much you need the Raregivers community until you find it.

Zoom Link: https://us02web.zoom.us/j/84782918881

We look forward to being with you soon.