When Life changes through Chronic Illness
Caring for a child with a chronic illness transforms every aspect of our daily lives. The routines we once took for granted become nearly unrecognizable. Our lives revolve around alarms, prescriptions, and appointments. Procedures fill our days, and restful nights become rare. No handbook prepares us for this kind of caregiving; instead, we learn as we go, adapting to new diagnoses and making room for a level of uncertainty that never truly disappears.
What holds this journey together is a type of love most people cannot fully understand. It goes beyond nurturing to include constant coordination, research, negotiation, and advocacy. It is the invisible labor of managing a life where every detail matters immensely. Though born from deep love, this labor requires more than any one person should have to give alone.
In the midst of caregiving, our own wellbeing often quietly slips away. We don't intend for this to happen, but slowly, our connection to ourselves fades. Eventually, we can barely remember what thriving feels like.
A Life Rewritten by Love and Leadership
Sarah Michelle Boes is a nurse practitioner, educator, and founder who has built her career at the intersection of innovation and personal transformation. As the creator of SMNP Reviews and current Chief Nursing Officer at Blueprint Test Prep, she has helped thousands of aspiring nurse practitioners build confidence, pass their boards, and step fully into their careers. Today, Sarah continues to lead Blueprint’s nursing vertical and guide the integration of new educational technologies, all while serving on the board of Conquering CHD and chairing the Children’s Heart Foundation’s Annual Cincinnati Walk.
But her deepest work began at home. When her daughter Meadow was born with severe heart defects, Sarah’s world changed in ways no degree could prepare her for. Alongside her husband, she is making a $15 million legacy donation to Norton Children’s Hospital, where the new Congenital Heart Center will bear their family’s name.
The Emotional Terrain of Medical Motherhood
The emotional realities of caregiving through chronic illness often stay hidden beneath the surface. Beyond visible exhaustion or occasional tears, we carry the steady weight of constant vigilance, anticipatory grief, and loneliness that accompanies even the deepest devotion.
Grief That Returns Again and Again
We experience a type of grief that rarely resolves. It is not tied to a single event, but resurfaces repeatedly through missed milestones, confirmed diagnoses, and abandoned plans. This ongoing grief does not diminish our gratitude but reflects the depth of our love alongside enduring loss.
Quietly Growing Isolation Because of Chronic Illness
Even when surrounded by others, we often feel isolated. The unique reality of caring for a child with chronic illness can create distance in relationships. Friends might fade away, unsure how to connect. Invitations lessen. Conversations grow superficial. This quiet isolation becomes our new normal, unnoticed by most yet deeply felt by us.
The Pressure to Always Cope
We frequently receive praise for managing well or staying strong. While intended as support, this praise often leaves little room for genuine vulnerability. Strength, in this context, can become another burden, making it harder to express our true feelings or ask for help when we need it most.
Constant Vigilance as Our Norm
Our bodies become attuned to constant alertness. We notice tiny changes in our child's breathing, color, or mood. We anticipate challenges before they arise. This ongoing vigilance, though necessary, takes a toll on our nervous systems, disrupting sleep and making true rest nearly impossible, even during stable moments.
Navigating Systems Not Designed for Us
There is no easy route through the healthcare system when parenting a child with chronic illness. Coordination, communication, and advocacy fall to us, yet the systems we depend on rarely offer compassion or efficiency.
Advocacy as a Survival Skill in Chronic Illness
Advocacy becomes an everyday necessity. We chase prescriptions, mediate specialist misunderstandings, and explain our child's condition repeatedly. We learn the medical terminology and language not by choice, but by necessity, simply to secure the care our child requires.
Exhausting Bureaucracy
Forms, insurance denials, appeals, and follow-ups become part of daily life. These administrative tasks drain valuable time and emotional energy. We constantly have to justify the essential care our children need, navigating a system that feels built on obstacles rather than support.
Fragmented Care
We become the central hub holding fragmented medical care together. Specialists often operate in isolation from each other, leaving us responsible for integration and ensuring everyone has the full picture. This coordination becomes an additional layer of complexity in already challenging days.
When Support Becomes Work
Ironically, some supportive services intended to ease our burdens instead increase them. Extensive paperwork, eligibility meetings, and follow-up calls consume precious energy and time, causing us to question whether these resources genuinely provide relief.
Reimagining Our Wellbeing
Wellbeing might no longer look like vacations or uninterrupted rest, but it remains accessible in smaller, meaningful ways. Rather than chasing an outdated vision of health, we redefine wellbeing to fit the lives we actually live.
Micro-Moments of Relief in Chronic Illness
A moment of wellbeing can be as simple as one deep breath, a warm drink enjoyed slowly, or listening to a favorite song. These small pleasures become vital strategies that sustain us, reminding us that moments of relief and joy are possible even amidst ongoing stress.
Redefining Care on Our Own Terms
We may grieve the wellness practices we once cherished, but new definitions of care are just as valid. Stretching briefly, saying no firmly, or allowing ourselves to cry each counts as genuine self-care. Wellness need not look perfect to have value.
Reconnecting with Our Bodies
We often live in our heads, out of necessity. However, brief moments reconnecting with our bodies through breathing, gentle movement, or stillness can help us feel grounded again, even if only for those micro-moments.
Receiving Genuine Support through Chronic Illness
Real support requires no explanation or justification. It might look like a friend quietly dropping off a meal, a message sent without expectation of reply, or a practitioner acknowledging our complex reality without trying to fix it immediately. These simple gestures nourish us without draining our reserves.
Reclaiming Ourselves Within the Chaos
At some point, we realize how far we have drifted from our personal identity. It becomes difficult to remember who we were before caregiving defined our days. Recognizing this reveals a natural adaptation to our circumstances. Yet, even within these realities, we can gradually reclaim pieces of ourselves.
Rediscovering something we once loved, exploring a creative impulse, or engaging in conversations that remind us of our identity beyond caregiving are meaningful steps. These moments offer a valuable reminder that we remain whole and complex individuals, even as we care for others.
True resilience involves integrating all parts of our experience, not forcing unrealistic balance. Allowing space for all of our conflicting emotions like strength and fragility, and dedication and exhaustion, helps us find a deeper, more authentic stability rooted in self-compassion and genuine presence.
Redefining Resilience in Chronic illness
In our world, resilience is not about remaining unaffected. It involves acknowledging how deeply we are impacted by chronic illness and continuing forward despite uncertainty. Resilience appears each time we hold our child through difficult moments, advocate firmly on their behalf, or make decisions without complete information. It lives in the quiet courage we bring to everyday tasks, even when hope feels difficult to grasp.
Resilience also means knowing when to pause, step back, and allow ourselves the full range of emotions we carry. This might involve resting, grieving openly, or simply feeling the depth of our exhaustion without judgment. Each of these experiences reveals our humanity, and embracing them gives us the strength to continue our journey.
True resilience makes room for softness, permission, and acceptance of complexity. It is not limited to moments of courage alone; it includes our vulnerability, our honesty, and our willingness to care for ourselves as fully as we care for others.
The TAKEAWAY
Caring for a child with a chronic illness means holding contradictions like joy alongside heartbreak, resilience with vulnerability, and profound love accompanied by fatigue daily. Recognizing the complexity we carry helps us honor the depth of our experience.
Our wellbeing matters profoundly because we deserve care and because our stability supports the wellbeing of our entire family. When we are genuinely supported, our caregiving becomes sustainable. When our experiences are validated, burnout becomes less likely.
Ultimately, behind every medical journey is a caregiver whose life deserves recognition and compassion. This begins by openly acknowledging the immense weight we carry and the unique wisdom we hold...
...precisely because of the challenges we face.
