Open Letter to A Good Friend

Published December 25, 2017 by zuzusays

This was a big issue for my mom too. I did understand it and wish I could have helped.

Handihelp Blog

Steve & me at Payne LakeMaybe by explaining it to you I can come to understand it better myself. I have a lot of sadness. How it presents in my mind is influenced by many factors. I’m not sure, but it seems to be becoming more prevalent either with growing older or as my years as a quadriplegic increase or both. I find myself longing for some of the abilities of my former life, like independence, freedom, spontaneity and self-reliance. Truly, if I have any part of these they are mere shadows of what they used to be. Oh, I forgot the most important one is control. That’s the issue! What control do I have in my life? Really?

Mental control, I feel, I have more of and most of the time it allows me to keep the other at a distance. Physical control, however, of my overall environment is really lacking. What I can…

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The Visit

Published November 15, 2017 by zuzusays

This poem was shared with me by the author’s husband, Bill, on Nov. 8, 2017, the day our caregiving group was given the opportunity to become independent.  Shirley’s poem explains the purpose of our group, helping guide caregivers during and beyond the walk.

The Visit

By Shirley Redlack Hill, October 17, 1989 (revised February 2010)

(Shirley’s mother died from complications of Alzheimer’s Disease in 1992; Shirley died from Alzheimer’s complications on December 21, 2016)

I visited Mom today, but she wasn’t home.

We smiled and hugged; I was alone.

In only body she was there for me,

Not the mom she used to be.

She tries to recall a friend or event,

But the demented mind is twisted and bent.

I long for peace in her tangled brain –

Something to ease her confusion and pain.

For a time now, I’ve patiently endured

Watching her once gentle thoughts obscured.

It’s hard having such a long good-bye,

Yet I know that God has a reason why.

Compassion I find so bitter sweet,

Still, I grow each time we meet.


I hug good bye,

Saying “Give me a kiss”,

Old times together always ended like this,

The road home is long and congested:

Tears come; they can’t be arrested.

But God’s love will make me whole.

Again His hand has touched my soul.

I know there are still trials to come,

And I pray for the nearness of His Son.

Long ago He showed me the way,

If only I follow Him day by day.


Thank You, Lord, for being near;

Please take away my mother’s fear.

Now, God, keep her safe in Your care;

Let me know You’re always there.

I release her to You.  As You stand at the door.

I open my hand – fist clenched no more.

Your grace is sufficient for each new day;

“Alleluia, alleluia” is all I can say.


As our visits draw to a close,

This wasn’t a walk I gladly chose.

For those who must experience the same,

My heart’s with you; you’re not to blame.

Someday soon new cures will arrive,

Making our loved ones once more alive.

For now, seek support in your prayers or a friend,

Knowing God’s there until the end.



Hoping We Would End It Well

Published September 20, 2017 by zuzusays

Caring for people with whom you had difficult relationships is such a challenge. Thank you for sharing your way of thinking about this.

Pursuing Hope and Finding Joy

grandma and mom

In September 2000 I was a 33 year old mom to 3 young boys.  My grandma, pictured here with my mom, died after 2 weeks of an acute illness.  She was the woman who knew me best; the person who prayed for me every day without fail.  My heart was shattered.  Exactly a month later my mom had a stroke that disabled her so severely we moved her 400 miles away from her home because she could no longer live alone.  I found myself in what is called the “Sandwich Generation” (definition: a generation of people, typically in their thirties or forties, responsible for bringing up their own children, while caring for their aging parents.)

Prior to this, my mom and I had done the difficult work of fixing our broken relationship.  She went through her own faith journey and submitted her life to Christ on a Walk to Emmaus in 1997.  I had wrestled with God…

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Published September 9, 2017 by zuzusays

Having had IC since I was about 33 and working in a high pressure teaching job with fifth graders I can imagine how difficult this is for your daughter. I hope she will gradually learn to educate her friends in a positive way so they understand her differences and learn to help her live her best life as my good friends have helped me.

Keep supporting each other, finding the foods and comforts you both love, and I hope her flare calms as she gets into school and a new routine in the weeks ahead. Deborah

Stupid Blueberries

Fifth Grade and IC:

Today she starts Fifth grade. My poor baby is sick to . I have many fears and emotions as this day comes and passes. Her IC is worse, she is starting a new school and well so many other things…20992620_10155629532302387_654505758188634996_n

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Wasted Energy on the Battles Against Appropriation and Racism: Indigenous Systems are Resistance

Published August 27, 2017 by zuzusays

New perspectives.

indigenous motherhood

“Let’s raise our children to fall in love with indigenous systems rather than attempting to destroy colonial systems from within.”

I say this because our babies need to know what is important. They need to know what will truthfully keep us alive in the long run. I say this because everything we are fighting in colonial systems rather than building up in our own systems is an example of us wasting our own resources. I say this because I do not want my grandchildren to think that a “dream job” at the UN is worth more than knowing how to fend for themselves on their homelands.

We spend more time & energy fighting appropriation, oppression, and racism in the colonial structures that they are built and thrive upon than we do re-learning and rebuilding Indigenous systems.

Imagine if we put the energy that we use in trying to convince, change…

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