on the blog
HGHS Blog
This space created from the heart, by two moms navigating the unique challenges of raising children with complex medical needs. This isn’t just a blog; it’s a community, a safe haven, and a call to action.
Hands Off Our Hope
Jan stood in front of the crowd and told them about our daughter Cassie. About how, after her diagnosis with Krabbe Disease, we were immediately thrust into a world of appointments, machines, specialists, and systems. She spoke about how we applied for Medicaid in the earliest days of Cassie’s diagnosis—and how we waited. And waited. And waited.
My Relentless Dance with Fate
Your Choice
From the Heart That Holds Heaven —
Grief is a weight unlike any other. It shifts, it lingers, it presses into the deepest parts of me. Some days, it whispers, and other days, it roars. But it is always there.
I have walked through the valleys of loss four times now. Each time, I have crumbled, I have questioned, I have pleaded. And each time, I have been met with a presence that holds me together when I feel like I am falling apart.
My first loss shattered my heart. My second nearly shattered my faith. My third showed me that even in suffering, God had not left me. And my fourth—this unexpected, painful, devastating fourth—finds me here, holding my miracle daughter while mourning another life that will never reach my arms.
I won’t pretend to understand why. I won’t sugarcoat the ache. But I do know this: I have seen the goodness of God. I have felt peace in the most impossible of places. And I will not let grief pull me away from the One who sits with me in it.
My babies are not lost. They are held, just not by me. But one day—one day, I will see them, hold them, know them. And what a joyous day that will be.
Until then, I will keep holding them in my heart.
Monsters
from the silence that screams —
“I used to be afraid of monsters ..”
Yet
from the tired thankful—
I’m grateful yet so very tired.
Denial. Anger. Bargaining. Depression. Acceptance.
from the griefkeeper—
"Grief isn’t linear. It’s not a tidy list of stages you check off and move past. It’s a storm—chaotic, relentless, and impossible to predict. Some days, I cycle through every stage in a matter of hours. Other days, I’m stuck, drowning in one for what feels like forever.
Denial came first, wrapping me in a false hope that this wasn’t real, that the test results were wrong. Then anger, sharp and consuming, would crash over me in the silence of the night. Bargaining brought endless 'what ifs,' each one more cruel than the last. And depression? It’s where I’ve been sitting lately, a place where the pain feels so heavy it’s almost physical.
Acceptance? I’m not sure I’ll ever fully get there. Maybe that’s okay. Maybe grief isn’t something you overcome; maybe it’s something you carry, learning how to live with its weight. Some days are heavier than others, but I’m still here. I’m still carrying it."
the loss of my life
from the weary heart —
"It’s 6 AM, and the world is still. But in this room, the silence is heavy, broken only by your cries and my whispered reassurances. Since 3 AM, we’ve swayed to this fragile rhythm, up and down, as if trying to outrun time. I hold you close, feeling the weight of your tiny body and the war it’s waging—a fight it was never meant to endure. Each breath feels heavier, each moment more fragile.
And yet, as I cradle you, I wonder… will this be the last time?
My sweet baby, you’ve changed me in ways I never imagined. You, the one who made me a mother, rewrote my heart in ways both beautiful and unbearable. If you are tired, my love, it’s okay to rest. You will always be my always."
Split Yet Whole: A Bond Beyond Control
words from jj knight —
Grief is a paradox. It fills you with emptiness, drowns you in longing, and yet somehow carves out an even deeper capacity for love. As I watch my daughter, a part of me, yet so far from my control, I feel everything all at once. Love and fear, joy and sorrow, hope and dread. The ache in my arms mirrors the ache in my soul, a constant reminder of how fiercely I wish to protect her from a world I cannot shield her from.
This poem is a reflection of that duality: the brightness of her spirit and the shadow of my fears. It’s about living with the unbearable, about praying for time while cherishing each fleeting moment. It’s about what it means to love someone so much that even the thought of losing them feels impossible to survive, and yet, somehow, you do.
The Titles I Didn’t Ask For
from the reluctant healer —
I never wanted to be a nurse or a caregiver, those titles were thrust upon me when life demanded it. As a mother navigating the chaos of medical caregiving, every moment is a delicate balance of love, vigilance, and exhaustion. These roles are heavy, unrelenting, and ones I never asked for, but I carry them all for her. Because she needs me to.
Rain Sounds and Midnight Reflections
from the silent mourner —
In the stillness of midnight, accompanied only by the rhythmic patter of rain and the hum of my child’s sound machine, my thoughts unravel. Grief and love intertwine in ways I never expected, reshaping everything I thought I knew about life, motherhood, and the weight of emotions too big to hold. As the rain falls, so do my reflections—on love’s power, grief’s permanence, and the unyielding beauty of both.
Cracks in the Foundation
words from shelby hergenrather –
A crack in the foundation lets light pierce the darkness that consumes her mind, a fragile reminder of resilience amid chaos. Sirens and hospital monitors echo in her nightmares, pulling her between past peace and present pain. She wakes to organized chaos, dreading the day yet smiling through it, holding onto strength she’s not sure she possesses.
This glimpse into the quiet survivor’s world reveals the weight of a stolen innocence and the unyielding determination to face each morning, no matter what it brings.
Wakeful nights
From the quiet dreamer –
In the stillness of 3 a.m., I find a fleeting sense of freedom. These stolen moments, though quiet and unremarkable, are a lifeline—a connection to a version of myself that feels so far away. Even as exhaustion waits for me in the morning, I cling to the rebellious sacredness of this time. Because in these wakeful nights, I’m not just stealing hours; I’m holding on to pieces of who I am.
Reflections in the Quiet Snow
from the heart of a fellow traveler —
“This morning, I stepped outside into a world untouched by the day, quiet, still, and blanketed in fresh snow. It felt sacred, almost like the earth itself was taking a deep breath before the chaos of life began again. In that peaceful moment, I found myself reflecting on how much life has changed, how grief and parenthood have reshaped me in ways I never imagined.”
Daily Essentials for Parenting a Child with Severe Disabilities: Our Tried-and-True Favorites
Parenting a child with severe disabilities comes with unique challenges, but the right tools can make all the difference. In this post, we’re sharing the daily essentials that help us support Cassie’s needs while making our lives a little easier. From sensory toys to adaptive clothing and feeding tools, these tried-and-true favorites have been game-changers for our family.
Relationships and Raising a Medically Complex Child: Finding Strength Together
Parenting a medically complex child reshapes every relationship in your life. From navigating grief and resilience in marriage to redefining friendships and family roles, this journey is as challenging as it is transformative. In this post, I share my honest experiences of love, loss, and growth, and how, even in the hardest moments, connection and grace have carried us through.
Welcome letter
Welcome to Her Grief, Her Strength, where two complex medical moms share their journeys of grief, resilience, and advocacy. Through personal reflections, parenting insights, and actionable steps for change, we offer a space of connection, hope, and empowerment. Join us as we navigate life’s hardest moments while celebrating the strength within.
Join the Her Grief, Her Strength Community
Becoming part of our family means more than just reading along. By signing up, you’ll get heartfelt stories, practical resources, and exclusive insights sent straight to your inbox, support and encouragement for your own journey whenever you need it most. Together, we’re creating a space of comfort, strength, and resilience. Let’s walk this path together.