By Jen Bartz
I have struggled with the word and concept of Hope. Even 3 years after my son's death, I still sometimes bristle at the mention of the word. I wrote this about my struggle with this concept. Hope is supposed to be a concept that brings comfort, peace, calm. But for families with a seriously ill child, it can be a love/hate relationship. After your child dies, there's a strong push for us to have hope. If your hope is gone, rest in knowing you're not alone.
Hopes and Dreams reflected in a child’s eyes
So much potential and joy for the healthy baby
“As long as the baby’s healthy, that’s what matters”
Fight and valiance in my NICU baby’s eyes
The tumult of each moment
Hope keeps us going through joy and sorrow,
Good news and bad.
Year after year, a Hope-filled celebration of another birthday miracle
Too many hospitalizations and surgeries to keep track of
Mountains summit-ed and Hope surging
He’s going to always fight, always climb, always survive, maybe thrive
Another Mother’s Day in the hospital,
He may not make it this time, whispered
Hope fades and then the miracle of survival revives it.
He will always survive it.
Death knocks at the door too many times to count,
Always lurking, always threatening
Hope seems to not care.
She’s always there, assuring it will not happen
Hospice comes in, but Hope says it’s just protocol
Your child is different
He won’t stop fighting and neither will you
Dying can take a long time, with peaks and valleys
Hope is always there
Hope is present and part of tragedy
Not in hopes and dreams but tragedy after tragedy
Hope holds hands with tragedy.
Hope is most poignant with that dark suffering that haunts and taunts
She whispers that death won’t happen
But Hope betrays
The betrayal
It’s suffocating
I will never trust Hope again.
Hope is not for me.
Hopes and Dreams a facade
Hope is tangled in tragedy
I cannot face Hope again
Will my other children be ok?
I hope so.
Will I survive this?
I hope so?
My marriage?
Hope so.
Thriving, Hope appears within the surviving remains
Not just tragedy.
I have hope again.
Hope for others to have what they need
In those soul-crushing moments
Hope that change can happen
In systems that just cannot handle despair and suffering of this magnitude
Hope that I can create a movement of change
Hope creates change
Hopes and Dreams
The tragedy soil blooms growth, development, sustainability, fresh hope
We create systems of support that’s better than Hope.
We catalyze a community of warriors staring death in its face
We embrace those without hope
Because we know that Hope is not everything.
You can survive, live and then thrive in the midst of Hopelessness
We spawn ecosystems that flourish with or without Hope
Whether Hope is your friend or not
You’re welcome here
