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.
Monsters
“I used to be afraid of monsters ..”
Yet
I’m grateful yet so very tired….
Denial. Anger. Bargaining. Depression. Acceptance.
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…
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
A crack in the foundation lets light pierce the darkness that consumes her mind, a fragile reminder of resilience amid chaos…
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.”
