Friday, March 25, 2011

Seasons of Life

I am honored to have written the cover article for the blog of, an online daily blend of stories, culture and community offered by the Evangelical Lutheran Church in America (ELCA).

Enjoy visiting the site and reading it there.
Seasons of Life

What type of season are you experiencing in your ongoing calendar of life?

Thursday, March 24, 2011

Elizabeth Taylor, Whitney Houston, Parents of Children with Disabilities

Yes, these individuals share something in common. At least according to the way my thoughts align.

Before I lay out my thoughts for your examination, I am curious: Do you see threads of commonality?

I would enjoy knowing. I'll look for you in social media comments and messages, and then tell you about the dots I connected this morning.
How I Connected the Dots

Ancient History

You want me to tell a story,
but the story you want told
isn’t mine to tell.

Not anymore

Maybe once upon a time
I could have given voice
to the memories and
the mission of that place we knew
once upon a time.

not anymore.

You will simply have to rely
on your memories.
I have only memories now too.
No story.

No voice.
No mission.
No desire for more.
Not anymore.

I have come to the end of the story
that I might have told once upon a time.
And there is nothing – no one – to tell.
Not about that story anyway.

Just ancient history
to remember
from once upon a time.

- With apologies to librarians and historians for you are right:
Certain stories must be told. I hope they are one day.
Meanwhile, I have begun a new story - one that is mine to tell.


Sunday, March 20, 2011

Hold on to what’s beautiful

I have learned that at the end of any given day, I can only hold on to so much. I hope I am learning to hold on to only what is beautiful. But it will take a bit more work.

When I have a day of experiences that dredge emotional crap from the bottom of my soul (defined here as the essence of who I believe myself to be), I am sometimes tempted to filter through the muck that has surfaced. I guess I want to search for explanations, to examine the mire’s contents and identify – if possible – what has caused the pain, anger, grief, hurt or frustration.

I know this pain
Why do lock yourself up in these chains?
No one can change your life except for you
Don't ever let anyone step all over you

I appreciate the imagery of a self-created “pain chain” found in the lyrics that Chynna Phillips, Glen Ballard and Carnie Wilson penned for Wilson Phillips’ 1990 debut song, “Hold On.” And as they point out, no one else should be blamed for my unwillingness to change my life circumstances.

You could sustain
Or are you comfortable with the pain?
You've got no one to blame for your unhappiness…
Don't you think it's worth your time
To change your mind?

Basically, the cause of my pain doesn’t get to be the reason I choose to remain in a mired condition. Healing must take place. I must shake off the dredged up crap of life and move in the direction of wholeness. It is the way to happiness. The task is to hold on – day by day – until I break free.

I know that there is pain
But you hold on for one more day
And you break free from the chains

Thank you, Carnie, Wendy and Chynna. At the end of this day, I plan to reflect only on what is good, pleasing, and commendable. Anything else seems a waste of time – a waste of life itself. Besides, I think the chain gang will do just fine without me.

Finally, beloved, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. (Philippians 4:8, NRSV)

May it indeed be so.

Tuesday, March 15, 2011

Freedom of Expression

What is on your mind?
Are you free to express it?
Free to share the thoughts that make you, you?

I hope so.
I truly do.

For your views are valued.
Your ideas are inspirational.

To someone.

So share them.


Tuesday, March 8, 2011

Holiday Hangovers

Note: This column first appeared in the winter/spring issue of the newsletter for the Spina Bifida Association of Iowa.

The holidays are over but feelings of frustration may linger. For all the fun that occurs, equal – or even disproportionate – portions of disappointment may have come with the celebrating. If you feel this way, you may have a holiday hangover.

One of the often unspoken realities about living with disabilities (or caring for someone who is) relates to the discomfort of celebrating a holiday in a home that is ill equipped for a person’s needs. Therefore, a holiday hangover can mean exhaustion – the kind that comes from sidestepping dietary needs; lifting and maneuvering in and out of inaccessible homes; wrestling into – and inside – bathrooms that are too small for mobility and medical aids; and endlessly moving chairs, coffee tables, and other types of furniture so a loved one can more easily move through the hosts’ home.

Often the hosts do not know how such an experience negatively impacts the quality of time together. Likewise, the ones most directly impacted do not know the best way to tell them.

Our family regularly suffers in silence, believing it is simply easier to go, make do, and then head home. It’s our attempt to avoid a holiday hangover, I guess. Yet it is difficult to avoid being angry or to avoid expressing anger in unintentional ways. Sometimes we enter awkward conversations about uncomfortable subjects – for instance, what it feels like to always be the people who have to figure things out. However, it never seems easy.

Therefore, a holiday hangover has emotional implications too. For instance, seeing children without special needs and being reminder of how different life has become. Same for conversations with family and friends about school topics, medical issues or everyday activities. Celebrations that involve family gatherings can be, well, complicated.

So what, if anything, is there to do? I suggest being as honest as possible about your feelings and practical needs with those you celebrate with – if you can. You might also volunteer to host the celebrations, explaining that any hassles associated with hosting will help overcome the discomfort related to circumstances beyond your control. Or, you can simply ask family members to be patient with you. Let them know their patience is a gift. In fact, patience is probably the best remedy for a family’s holiday hangover – patience with others and with ourselves.

Here’s to a wonderful new year for you and your family. May your 2011 holiday hangovers be few and your happy holiday memories plentiful.

Joy M. Newcom, in addition to being Stross’ mom, is the author of Involuntary Joy ( In this memoir, she chronicles her first five years as a mother, revealing the often unspoken thoughts and feelings that are familiar to parents and guardians of children with disabilities. She continues to share her personal story via Involuntary Joy’s Facebook page and in her vlog-blog (

Saturday, March 5, 2011


You were deliberate, intentional, and calculated.
But you were wrong.
You took what was not yours.
That makes you a criminal.

But who are you to me really?
Did you pass me in a hallway?
Perhaps even smile at me today?
Did you ask a question, and I did I supply you with an answer?
Did you get what you needed?
Did you?

You – likely – needed more than what you took.
So what will you do now?
Do you have a long-term plan
or is your life a string of moments?
Like today.

A chance to
grab what you believe gives you power
and then simply walk away as if nothing happened.

But something did happen.
You know it.
You are proud – for now.
You got what you wanted.

Good luck with that,
whoever you are to me really.

We both know that if we cross paths again,
you will know me, but I will still only wonder about you.

And I will have to
pass you in the hallway,
smile at you,
answer the questions you might ask and even wish you well;
because – honestly – can I do anything less?

And, like you, I will be deliberate, intentional, and calculated.
But I will be right.

And it will suck.


Wednesday, March 2, 2011

Love and Other Drugs*

Mark may not have enjoyed the events of his morning, but I certainly did. Well, one thing in particular: the lovie-eyed looks I got when he was waking up in the recovery room of our local outpatient surgery center. Oh! And the loving, drowzy comments that came with them.

“You are amazing.”

His soft eyes locked on my eyes.

“You are beautiful.”

He added a tired smile, still looking only into my eyes.

“You really are incredible. Just beautiful.”

Wow. His face was so love-filled, his voice so sweet. Whatever they put in his IV, I am grateful for it.

For 45 minutes or so, Mark floated in and out of this state of sedated love, and I heard how beautiful and amazing I was at least a dozen times.

Fortunately he wasn’t recovering from anything more than a test that involved looking at his esophagus and stomach with the aid of a scope. And fortunately, his test results were normal.

The sedative that freed Mark’s passionate side made the test more tolerable. It also made him even more lovable; for in addition to the words he spoke, Mark also kept a soft but firm hold onto my hands. He held my hands in his from the moment he first reached out – quite bleary-eyed –until falling soundly back to sleep after hearing the doctor’s excellent report.

Then, left alone to share our dorm-room-sized, curtained cubicle, I felt like we were dating again. And in the brief spaces of time when Mark drifted back into deep sleep, I gazed at his face with moist eyes. He is still the man I fell in love with.

We are both so different from the 25-years-younger versions of ourselves. But we are still soul companions. We are still in love.

I am so blessed to be Mark’s wife. So blessed to have been his caregiver today.

And you know what? He is not looking forward to the colonoscopy scheduled next week for him, but (forgive me, Mark) I am.

Mark, I promise to meet you in recovery again and hold your hands for as long as you want me to.

How about forever?

* Yes, I’m borrowing the title of a movie for today’s blog, but it seems so apropos.