When We Reach for Uncommon Goals

It is shortly after midnight when I am awakened by the shrill beep of the backup battery at my bedside. 

As my brain struggles to emerge from of a deep sleep, a shudder runs through me. That sound can only mean that our power is out again.

We live in rural Idaho, a beautiful place teeming with wild critters (most of whom are actual animals) and nature. But sometimes nature betrays us here. And when it does, it's often the spring storms that plunge us into the dark. Twice this month, wind and rain have taken out our power.

And because our adult son Kevin has depended on a ventilator to sleep since his spinal cord injury in 1997, a power outage is a big problem for us. After his accident left him paralyzed from the neck down, Kevin was initially completely vent-dependent. But he surprised the medical world by regaining much feeling and movement. After two years of needing the ventilator for every breath, he was able to wean off for all his waking hours. He stills goes back on the ventilator at night. Without it, he can't sleep.

In the beginning, every power outage panicked us. 

It meant "bagging" him by hand with the same type of ambu bag used by emergency personnel until the electricity was restored. After he could breathe on his own, it meant staying awake until we had power again.

Over the years, we bought a couple of generators in an effort to find a way to let Kevin sleep in an emergency. These were cumbersome and loud. We graduated to deep-cell batteries and a pure sine inverter with which to keep his equipment safely running through the outages.

But an outage meant someone had to know how to switch everything over to battery power. Even with short-term battery backup until we got the other equipment in place, it was still cumbersome.

So Kevin began researching solar power. He did all the research himself, consulting with techs and combing through reviews and YouTube DIY videos. He spent hours learning how solar power works and the best system to safely power sensitive medical equipment.

It took him two years to assemble the needed supplies. He and his father brainstormed how to set up the system for the most efficient and safe conversion of sun power to electricity. They made the system off-grid so there would be no possibility of dangerous feedback to the power lines.

Hello, Idaho; nature calls.

Recently the system was finished, and before we even had a chance to take it on a test run, nature provided the opportunity. When the power flickered and died shortly after midnight. Kevin's dad Aaron, who stays up every night to ensure Kevin's safety on the ventilator, made the changeover to the solar-powered battery with a couple of switches.

To our relief, the system worked perfectly. Kevin stayed on the ventilator all night, and by the time he got off it, the system had already recharged the batteries, so they were ready for another night.

This week, it happened again. 

Once again, the system performed without a hitch.

Kevin has made a couple of additions that now allow him to safely charge his smaller devices, such as his phone and touch-pad, directly from the battery bank.

This morning, I'm grateful for a son who has taken intelligent charge of his own safety. I'm grateful for a husband who was willing to be his hands and feet in building the system. I'm thankful for the opportunity to watch them work together for a common goal. I'm inspired by this example of caregiving at its purest, as I watch a father assist his disabled son reach uncommon goals.

Tonight, other trials may keep me awake. But Kevin's independent spirit has made it possible to sleep better, knowing he will.

Living Thankful

"I don't know how you do it."

We hear that every so often from others when they learn about our story. People often wonder how our family has been able to survive and even conquer the challenges of caregiving for so many years. My response is always to give God the glory for His keeping power over one of the most difficult seasons of our lives. We couldn't do it without Him.

But I know that any work of any value that accomplished in this life is done in partnership with the Sovereign. He has the plan, but we are His hands and feet and voice. It's His power displayed through our effort.

Caring for others is hard work.

It's easy to get in a rut. It's really easy to feel sorry for ourselves when we're tired and feeling overwhelmed. Complaining takes a lot of emotional effort and drains us of our joy.

That's why cultivating a thankful heart is key to successful caregiving. It takes work, for sure, but it's key to breaking old thought patterns that feed a sour disposition.

I'm always amazed at the joy with which our spinal-cord-injured son faces life. Sure, he has bad days, too, but he generally faces most days with a truly grateful heart. He's suffered so much that he's just glad to be alive and well. He lives without bitterness. He accomplishes what he can each day. He looks forward to the future.

I, who can move and breathe without disability, often shuffle through the days with a grumpy attitude. That makes both me and those around me miserable. So, for this Thanksgiving, I'm sharing a few things for which I should be grateful every day of the year.

For this, and much more, I'm grateful:

*The gift of Life 
After watching my son learn to breathe again, I'll never take even the next breath for granted.

*Good health
I'm so thankful that, even in my sixties, I'm still healthy and able to care for my family.

*Freedom
We have just emerged from a brutal election cycle. But I'm still amazed how this country can come together and move on in a generally civilized manner. I thank God that the citizens who peacefully disagree with those in power aren't hauled away to jail or beheaded on a beach. And I'm deeply grateful that those who are disabled and aged aren't forced to give up their lives for the supposed greater good of society. I pray that never happens in this country.

*The faithfulness of God
He is good to me, even when I'm not good to Him or others. His grace blankets our family with peace.

*The loyalty of my family 
We were always a close family, but it took a disaster for me to see how devoted they really are to each other, and how they make sure that their relationships stay solid, even in the worst of times.

Especially in the worst of times.

*Daily miracles
We were told that if would be impossible to care for our son at home. He was told it would be impossible to go home. Every day, for two decades, we have lived the impossible!

*Answered prayers
If there's anything I've learned in the last year, it is to NEVER quit praying, unless I know God's answer is no. I've had prayers answered in the last year that I had prayed for years, seemingly without an answer.

Trust in God's timing. He does hear.

*Financial provision
We never have too much. But we always have enough. The bills are paid, and there is food on the table. There's even enough to share with others and have some fun. I'm very grateful to the federal and state agencies that work hard to help us care for our son. Sometimes, when I'm feeling irritable at some regulation or bureaucratic snafu, I try to remember just how much they have done for us. They are human, too, and are trying to help, even when the red tape seems counterproductive.

I could go on and on...

There is such an embarrassment of richness bestowed on our family that I could spend the bulk of most days in an attitude of thanksgiving. Instead of waiting for the annual Turkey Day,  my heart should be on its knees saying grace every single day. Because for us, life is good.

Leaving the Shadowlands Behind

When our son Kevin was injured in a fall nearly two decades ago in another country, all I cared about was keeping him alive and getting him home. Once his condition stabilized, he was flown to a hospital in the States. We nearly lost him twice in the ensuing days. Eventually he again stabilized enough to be transferred to a rehabilitation hospital. The staff there told us what to expect when he came home and prepared us to deal with his extensive medical needs.

Learning to cope with the emotional and spiritual cost was more difficult. We struggled through long seasons of despair and loss as we cared for Kevin year after year. We slowly learned to surrender our dreams in exchange for God's plans. We eventually moved from denial to grief to acceptance.

Finding joy was a surprise.

Everyone told us caring for him would be impossible. No one told us that caring for him would bring us joy. In the years since his injury, we have learned much about courage in the process. Kevin has fought for his faith as valiantly as he fought for his life. He built a 3-D graphics studio with his brother and founded a popular Christian music website. He lives each day with trust and without complaint.

Certainly these years have been hard. But when I see Kevin laughing as he races us in his wheelchair on a seaside boardwalk, taking his dog for a stroll, working with press agents and music companies and recording artists, or rolling down the aisle to be his brother's best man, I am reminded of all the beauty no one told me to expect.

Today, if you're a mom or dad or grandparent or spouse to someone who needs a caregiver, I want you to know this:

Caring for others is the most important job you will ever have.

The life of another human being is in your hands. Your work is important, unseen, and sacrificial. Your dreams for tomorrow have been set aside for the realities of today. You endure incredible daily stresses, often alone. Sometimes it feels like no one cares for you, and it would be easy to let the night fall on your faith.

But you can leave the shadowlands behind, because Someone does care for you.

There is no place so dark that God can't find us. 

I know, because I've been there. But He wouldn't let me stay in the shadows. Thank God for giving me renewed hope and light for the journey! May He grant you light and joy for yours.

Book Review: Out from the Shadows

Out from the Shadows: 31 Devotions for the Weary Caregiver by Pam Thorson. 5 Stars

Out from the Shadows is a devotional with thirty-one inspirational segments. Each chapter includes a verse at the beginning, a short life lesson, a personalized prayer, and a section for private reflections. Written by author Pam Thorson, she offers Caregivers a peaceful reprise from their weary-laden days.

Released through Lighthouse Publishing of the Carolinas, Out from the Shadows serves to bring devoted Caregivers out from the darkness and into the light of hope.

{My Thoughts}

I know that in writing this review, I will be a bit biased in favor of my Mom’s book. I would say that you’re probably right, but I wanted to give her one, anyways. Since I’m a book reviewer, I couldn’t possibly say no to adding my own thoughts to her two titles (her first book is Song in the Night). Putting that all aside, I wanted to pen an honest and detailed analysis of Out from the Shadows.

While Out from the Shadows is geared towards Caregivers, it is not exclusive to that niche. Anyone can pick up a copy of this title and find the same encouragement from within. What I liked most about this devotional, is the secluded area for my own personal reflections. There’s a set of five questions arranged at the end of every chapter with extra lines for written notes. Love it when a devo has this! I am inadvertently a notetaker, so I need lots and lots of space for my writing.

I like to list my favorite devotionals/chapters and book quotes into my book reviews. Here’s mine for Out from the Shadows - Chapter One: Jimmy’s Hunger. This chapter is dear to my heart because it’s a true tidbit from the childhood of my Grandpa – an amazing man of God. I don’t want to reveal why, exactly. You will need to read it and find out for yourself. Favorite book quote is, “My dad’s hunger for God inspired my own search for life’s meaning. His determination to break free has challenged me to wear my heavenly Father’s name with integrity and leave a legacy my family can be proud to claim.”

The book cover is perfect for the theme surrounding Out from the Shadows. I’m reviewing the paperback copy, so I can really see the transition from black to white on the image. It portrays a beautiful message to Caregivers that we can walk out from beneath our burdens and into a state of joy.

I am honored to be a part of my Mom’s authorship. Being her Office Assistant has been a blessing, and I wanted to honor her hard work with my acknowledgment in this book review.  Normally, I mention if I received a book in exchange for my honest review. In this case, I bought a copy of Out from the Shadows for my own use without the agreement of writing a book review. In other words, I did not receive a copy from the author or publishing house in exchange for a review – still honest, however! Hehe.

There is obviously no area on Amazon for any autographed copies of my Mom’s books. If you’d like a signed paperback edition of Out from the Shadows, please send me an e-mail here. Be sure to also read Pam Thorson’s first self-published book, Song in the Night: One Family’s Journey from Darkness to Dawn – a true life chronicle on our family’s response to a tragic accident.

25 Helpful Books For Caregivers

A Long and Winding Road: A Caregiver's Tale of Life, Love and Chaos by Linda Brendle

Ambushed by Grace: Help and Hope on the Caregiving Journey by Shelly Beach

Strength for the Moment: Inspiration for Caregivers by Lori Hogan

Not Alone: Encouragement for Caregivers by Nell Noonan

Out from the Shadows: 31 Devotions for the Weary Caregiver by Pam Thorson

A Moment with God for Caregivers by Becky Fish

Daily Comfort for Caregivers by Barbour Publishing

Daily Comforts for Caregivers by Pat Samples

Transitions, Trust, and Triumph: A Daily Devotional for Caregivers by Jean D. Moody-Williams

Strength to the End: A Caregiver's Journey by Lucy P. Carter

Twice Blessed: Encouragement for the Caregiver and the Carereceiver by Laura Sowers

Help for the Caregiver: Facing the Challenges with Understanding and Strength by Michael R. Emlet

Hope for the Caregiver: Encouraging Words To Strengthen Your Spirit by Peter Rosenberger

Caregivers' Devotions to Go by Gigi Devine Murfitt

Blessings & Prayers for Caregivers: A Devotional Companion by Annetta Dellinger and Karen Boerger

Soul Care for Caregivers: How to Help Yourself While Helping Others by Susanne West

Finding Your Way: A Spiritual GPS for Caregivers by Sandy Lovern

Song in the Night: One Family's Journey From Darkness To Dawn by Pamela Thorson

Chicken Soup for the Soul: Family Caregivers: 101 Stories of Love, Sacrifice, and Bonding by Joan Lunden and Amy Newmark

124 Prayers for Caregivers by Joan Guntzelman

Devotions for Caregivers: A Month's Supply of Prayer by Marilyn Driscoll

A Caregiver? Me? by Lynda Bush

Strength & Courage for Caregivers: 30 Hope-Filled Morning and Evening Reflections by Terry Hargrave

The Hope of Glory: A Devotional Guide for Older Adults by Nancy Parker Brummett

At the Heart of the Matter: A Spiritual Journey for Caregivers by Dr. Eboni Ivory Green

The Invisible Man: When We're Feeling Alone

Their faces smile back at me from the Facebook page. They're posing for the camera at a local restaurant. They swam and laughed at the annual "Chicks in the Sticks" camp-out. They're planning a girls' trip to the coast. Events at which I wasn't invited and knew nothing about.

Things I used to do before I became a full-time caregiver and an invisible (wo)man.

Not that I could do any of those things, anyway. My job doesn't come with vacation time. My husband, youngest daughter, and I carry the duties of caring for my quadriplegic son largely without respite. Our other children help whenever they can, but the day-to-day responsibilities are ours.

And I wouldn't have it any other way. I love my job. I love caring for our son. The gains far exceed any sacrifices we've had to make along the way. Since my son's accident seventeen years ago, I've become a certified nurses' aide and then a licensed practical nurse. I've written two books. I speak regularly to others about God's work in our lives. My life is busy and fulfilling.

But sometimes, I see the abandon with which others do things that would take days of planning for me, things which are totally impossible for us now. They all look so carefree. So abundantly full of time and energy and each other.

So totally out of my reach.

Recently my children arranged a rare two-day outing for my husband and I to celebrate our anniversary. As we took in the sights of a nearby city, we saw vacationing families everywhere. People with boats and cabins and time on their hands. I asked my husband, the one who stays up every night to watch over our son as he sleeps on the ventilator, if it bothered him that we didn't have the lives of most people our age. I knew how much he used to look forward to retirement and a chance to travel the country.

He turned to me with a smile and said, "No, I don't. You and are doing something together that is important for our son and for God."

Wow.

How could I forget that Facebook and television and the world I see around me aren't the true reality, but snapshots of lives suffering their own hardships? Everyone feels alone at times.

"Each one should test their own actions. Then they can take pride in themselves alone, without comparing themselves to someone else."
-Galatians 6:4 NIV


While it's true that caregivers often work alone and behind the scenes, we aren't really invisible. We're the point men in a fierce battle for the lives of those who are vulnerable, disabled, or ill. We give hope to the living and comfort to the dying.

Yes, it can be a lonely job. But we're never invisible. At least not to the ones for whom we care and with whom we walk side-by-side.

And to the God who has called us to this wonderful journey.

14 Quotes For Caregivers: Part 1

"Caregiving is not gray, unless we have allowed our hearts to let go of hope."

"No place is so dark, no shadow so deep, that God can't find us."

"Caregivers live in the daily shadows of death, countless duties, and shattered dreams. But they don't have to exist in the shadows of their faith."

"Forgiveness is a strange kind of walled garden - exceedingly ugly as we approach it, but breathtakingly beautiful once we've stepped inside."

"Not one to be impressed with or put off by outward appearances, God sees us as we truly are."

"Run in the direction you're driven."

"In the stillness of night, when the life of one man depends upon the sacrifice of another, nothing speaks louder than loyalty."

Next Week // 14 Quotes For Caregivers: Part 2.

Photos by Grace Thorson. Quotes by Pam Thorson (Out from the Shadows: 31 Devotions for the Weary Caregiver. Available on Amazon.com in both Paperback and Kindle format.) Ask for a signed copy here.