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Hope's Soiled Past

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

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