Parenting a Child With a Rare Disease and Reflecting on the Power of Pause

The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story filled with love, resilience, and the transformative power of self-care.

I can still vividly recall sitting by her hospital bed, enveloped in the sterile scent of disinfectant and the soft beeping of monitors. My eyes welled up with tears as I looked at her delicate face, overwhelmed by a rush of emotions that words could never fully capture.

Only a few days prior, I had joyfully welcomed 2 bundles of pure joy into the world, their eyes filled with curiosity and cheeks flushed with innocence. Little did I know that fate had a different plan for our family.

Coping with life-altering news

During a routine newborn screening, test results unveiled an abnormality that would forever alter the course of our lives. And as if life hadn't dealt us a heavy enough blow, further heartbreak awaited us when she turned 6 — a devastating new diagnosis of an auto-immune disease.

I felt my heart shatter into pieces for her. But in that moment, in the midst of parenting and reflecting, I made a silent vow to embrace the power of pause in order to care for myself and chart out a path to becoming the committed mom and advocate she so desperately needed. When I think about my experience as a parent of a child living with a rare disease, I would characterize the experience as parenting and reflecting on the power of pause.

My sudden realization during the early years

Looking back on those early years of my advocacy journey, a particular story stands out — a testament to the profound impact of self-care.

The days turned into weeks, and the weeks into months, as I found myself caught in a whirlwind of doctor's appointments, treatments, and endless research into her condition. I became her dedicated advocate, her fiercest protector, her pillar of strength.

But in those early years after diagnosis, with each passing day, I felt a part of myself slipping away, buried under the weight of immense responsibilities and overwhelming fears.

During one quiet moment, as I sat by her bedside, watching her innocent face peacefully sleep, a deep realization struck me like a flash of lightning. How could I continue to care for my precious child if I didn't prioritize my well-being? How could I be the unrelenting rock she needed if I crumbled under the weight of pressure?

In that moment, I promised to honor the power of pause by valuing small moments of self-care — to read a book to find calm when my mind begins to race, to take peaceful walks in the gentle morning light, to allow myself to breathe and exist.

Seeking community, finding family

As time passed, I sought out fellow parents navigating similar journeys. In the embrace of their hearts, we found solace – a connection that reassured me I was not alone on this challenging journey. Together, we shared our stories, fears, and moments of joy. In each other's words and presence, we discovered newfound strength and support.

These parents are my community; we attend conferences, webinars, and other welcome events together. Parents in my rare disease community have been an extended family for me.

Navigating an uncharted path

Being a parent is an extraordinary yet demanding role, an unyielding display of selflessness. But when your child is diagnosed with a rare disease, those demands reach new heights.

As parents, we become tireless health advocates, steadfast protectors, relentless researchers, and a pure source of strength for our precious children. However, amidst the chaos of advocating for our children's health, we must remember that taking care of our own mental well-being is just as crucial.

In this article, I invite you to join me in exploring the power of pause, self-care, and the immeasurable value of finding support as we navigate the uncharted path of being parents to children with rare diseases.

1. Acknowledge your big responsibilities

Caring for a child with a rare disease often feels like carrying the weight of the world on our weary shoulders. It's essential to recognize that this journey is far from easy, and it's perfectly normal to feel overwhelmed or emotionally drained.

By acknowledging the enormity of our responsibilities, we take the first significant stride in creating a protective support system for ourselves and our children.

2. Give yourself permission to pause

In our tireless pursuit of advocating for our children's health, it's all too easy to overlook our own well-being. Yet, by granting ourselves permission to pause, to step back momentarily, we grant ourselves the invaluable opportunity to recharge and rejuvenate.

Let us reassure ourselves that taking a step back from our responsibilities does not make us any less dedicated to our children; it showcases our commitment to being the unwavering advocates they need.

3. Unapologetically prioritize self-care

Self-care is not a frivolous indulgence but an absolute necessity, an act of self-preservation we owe ourselves. Let us identify the activities that bring us immense joy, inner peace, and much-needed relaxation and make them an integral part of our daily routines.

Whether it involves devouring the pages of a cherished book, meandering through nature's symphony on a tranquil walk, embracing the meditative flow of yoga, or indulging in a treasured hobby, we must unapologetically prioritize self-care. By doing so, we demonstrate our unwavering commitment to our own well-being as we navigate the complex tapestries of rare diseases.

4. Seek out others on similar paths

Over the years, I've learned that the power of shared experiences cannot be understated. If you're trying to find your community, seek out fellow parents who are navigating similar paths – the ones who understand the unique challenges we face each day. There is comfort in knowing that you're not alone.

Connect with local organizations, join online forums, and seek out support groups where you can find solace in the understanding, comforting arms of those who have walked the same uncharted roads. By sharing our experiences, seeking guidance, and extending our support to others, we create an indomitable sense of community, a lifeline that will fortify our spirits and provide unwavering strength even amidst the darkest moments.

5. Don't shy away from therapy or counseling

Parenting a child with a rare disease can be an emotional see-saw that can lead to heightened stress, unfathomable anxiety, and heartbreaking moments of despair. In these trying times, let's not shy away from seeking professional help if we find ourselves overwhelmed.

Therapy or counseling can provide us with a safe space, a sanctuary where we can openly process our emotions, nurture a deeper understanding of our needs, and develop invaluable coping mechanisms to navigate this intricate maze of emotions that comes with being a parent of a child with a rare disease.

An affirmation that I have consistently told myself is that I am worthy of making time for therapy. There is no shame; it helps place feelings of guilt, overwhelm, and fear in a bubble that you can let go of when necessary.

Honoring our own strength

As parents, our strength and love for our children are without limit. But we must acknowledge that we cannot pour into others when our own cups are empty. By parenting and reflecting on the power of pause,  we acknowledge the need for consistency while practicing self-care routines, seeking support, and prioritizing our own mental health. We become the model advocates our children need.

Throughout this journey, we must remember that we are worthy of care, compassion, and support just as much as our children are. Finding balance and fiercely caring for ourselves, we set an empowering example for other parents treading similar paths. Together, we can forge an unyielding community, a safe haven that uplifts, supports, and empowers parents as we walk along this profoundly challenging yet rewarding journey.

How are you practicing healthy habits of parenting and reflecting on the power of pause? Is practicing self-care something you'd like to integrate into your life but aren't sure how? Check out my other article, Self-care Practices for Rare Disease Caregivers: My Journey to Resilience.