Category: caregivers

Nov 18

When Life Gets “Really Messed Up”

In 2006 Debbie was the 39-year-old mother of a toddler daughter, and she and husband Karl wanted one more child.

Instead her life plans “got really messed up” when they learned she was pregnant with twins.

“That caused a lot of anxiety because I’m a planner and I was planning on having two kids, not three,” Debbie explained as we chatted recently at our favorite coffeehouse.

She delivered identical twin daughters with a combined birth weight of nearly 14 pounds and settled into caring for two newborns and a 3-year-old. But at 4 months, the twins were not hitting expected developmental milestones.

“Even though the doctor wasn’t concerned, I kept feeling that something was off,” Debbie recalled.

At the age of 1 neither Sydney nor Danielle could stand, and at 2 they still weren’t talking. Evaluations with early intervention and sessions with therapists produced no answers, but every specialist thought they might catch up.

And then Debbie’s life plans got shattered when a new doctor bluntly assessed the beautiful 2-year-olds, saying “they’re not going to catch up.”

Sydney & Danielle, 1 year old

“He took away all hope from us,” Debbie recalled. “Karl and I left that appointment and our world was rocked. I spiraled down to a really dark place with so much anxiety. Medication helped some, but I was waking up in the middle of the night with panic attacks.”

She called an old friend and asked how she overcame her anxiety.

“It’s going to sound silly,” the friend acknowledged, “but I started following Jesus.”

Meanwhile Debbie’s mother-in-law lovingly urged her “to let your worries go to God.”

That created a new problem because in college Debbie had begun questioning God’s existence.

But in spite of her doubts, in 2010 she visited a church near her home. There she joined a small group and was baptized, but privately wondered: if there is a God, why would He do this to me?

Front to back: Kiersten, Danielle & Sydney

In 2013 when the twins were 6, brain MRIs showed an anomaly called polymicrogyria*. Additional testing at 14 found a rare genetic mutation which shed more light on the girls’ intellectual disability, ADHD, speech/language impairment, and juvenile scoliosis.

Then in 2021, while still struggling with all the “normal” things her family couldn’t do, she joined my weekly women’s Bible study to get help understanding Scripture.

“Your group changed my life literally,” she told me. “At some point I started realizing that God has a purpose for everyone and mine is to help my girls become the best they can be.

“My anxiety about the twins’ intense physical and emotional needs is what really brought me back to faith,” Debbie explained. “Now just seeing how much they enjoy life and make people smile gives me great joy.”

“Mommy, look at the moon!”
“Ooooh, look! The sky is purple!”

“They see the beauty in everything of God’s creation,” Debbie said, “especially things we just take for granted.”

Despite the fact the twins will never “catch up,” they continue to learn new skills such as stocking shelves and try new activities like gardening at The Camphill School for special needs students.

2025 Debbie, Danielle, Kiersten, Karl & Sydney

And Debbie is especially grateful for her “unplanned” family of three children because of the twins (now 18) impact on their big sister.

“If Kiersten were an only child, she would be so different,” Debbie said. “Because of them, she has become so compassionate.

“Having special needs twins was never my plan, but now I know God’s plan is for me to help them grow and become all they were meant to be,” she explained. “As long as I focus on that, I can handle the challenges and be at peace with our life, even though it is so different from that of our friends.”
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*Polymicrogyria is a brain malformation characterized by excessive folds in the cerebral cortex. Poly (many)-micro (small)-gyria (folds)

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Open in your browser to hear “Good Plans” by Red Rock Worship  © 2023 Songs of Red Rocks Worship Publishing /Be Essential Songs (BMI) (admin. at EssentialMusicPublishing.com); Redburns (ASCAP)
 

Oct 14

You Need a “Karen” in Your Life

Photo credit: X@gracklebirder1

Last month a Phillies fan retrieved a home run ball and handed it to his young son, only to be immediately confronted by another Phillies fan, who demanded the ball, which had landed nearer her. The shocked dad took the ball from his kid and gave it to the woman, who marched back to her seat.

The incident was captured on video and of course, went viral. Social media immediately nicknamed her “Phillies Karen.”

In case you’re not familiar with “Karen” as a pejorative slang term, Wikipedia explains it is “typically used to refer to a middle class woman who is perceived as entitled or excessively demanding.”

Many women with the now-maligned name of Karen have started using the tagline “Not that Karen”–as evidenced by one of my fellow New York Times Spelling Bee game players.

Through the years I’ve had many women actually named Karen move in and out of my life. In fact at one point in the ’80s there were so many Karens in our church that they started a “Karen Choir” of six lovely voices.

I truly treasure all those Karen-memories, but three Karens have especially blessed my life.

All are younger than I am–spring chickens, only in their 60s–and my dear friends for four decades. They epitomize poet William Ward’s description:

“A friend is one who joyfully sings with you when you are on the mountaintop
and silently walks beside you through the valley.”

Friend. It’s a word not easily described, so we tend to stick adjectives in front of it: close friend, best friend, childhood friend, lifelong friend. Friends are special because–unlike our relatives–we get to pick them!

L. to R., Karen W., Karen M., Karen Y.

I’m so happy I picked Karen M. for a friend. Her wry humor still cracks me up and I’m inspired by her care for her husband, who had a massive stroke last year, paralyzing his left side. I especially appreciate her raw honesty as she struggles against the fear, anxiety and overwhelming daily tasks: “I’m clawing my way back–one prayer, one verse at a time.”

I’m so grateful I picked Karen W. as a friend. Together we’ve nursed our babies, served our Lord and ministered to cancer patients and grievers. Her incredible compassion for family, friends and the lost energizes me to press on and not give up.  And I’ll never forget that she “celebrated” her 30th birthday visiting me in the hospital after my cancer surgery.

And I’m so thankful I picked Karen Y. to be my friend. For 14 years we’ve celebrated a “Pamper Lynn & Karen Day” (sometimes multiple times!) Her wise insights feed my mind and her peaceful presence soothes my soul, as she reminds me to “Keep swimming, little eagle!” ( https://lynneib.com/2025/09/09/10892/ )

My weary friend, you need a Karen, too.

Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. Ecclesiastes 4:9-12

And if you don’t feel like you have that kind of friend, ask God to bring someone into your life as He did for the Apostle Paul:

When we arrived at Macedonia, there was no rest for us. We faced conflict from every direction, with battles on the outside and fear on the inside. But God, who encourages those who are discouraged, encouraged us by the arrival of Titus.  2 Corinthians 7:5-6

Ask God to send a “Titus” (or a Not-that-Karen) to bring you healing hope.

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Open in your browser to hear the contemporary Christian group Selah sing “You Raise Me Up” ©Universal Music Publications and Peermusic III Ltd . This is what true friends do for weary souls.

 

Jul 29

“Just to Get through This!”

When Layne Lebo recently was diagnosed with cancer, his plan was “just to get through this.”

But he quickly realized God had a much bigger–and  better–plan in mind.

The journey actually started routinely enough.

“I was combing my hair and discovered a lump on my arm,” recalls Layne, then 58, and the lead pastor at a large church in Mechanicsburg, PA.

He felt fine and had been exercising quite a bit, so Layne didn’t really think it was anything of concern. At his next primary care physician check-up he casually mentioned the lump.  The doctor wasn’t particularly concerned either, but recommended an MRI just to be sure.

The ensuing biopsy results were delivered Feb. 6.

“The good news was I didn’t need surgery to have the cyst removed, but the bad news was I had non-Hodgkin lymphoma,” Layne explains.

The normally optimistic guy was reeling, but had to go home and share the report with Greta, his wife of 32 years. Together they “processed” the life-threatening diagnosis, including how best to share it with their three kids, ages 21, 25, and 27.

That same day Greta promptly wrote a list of six commitments she hoped the family would embrace:

Armed with that simple plan, Layne began chemo in April with his family–near and far–cheering him on.

Around that time, one of the pastors on staff at his church sent a text saying that as she prayed for him, she “strongly sensed” God would use this cancer journey to give him “more compassion for the suffering of others.”

“I think I’m a pretty nice guy,” says Layne, “but I find it challenging to relate and show compassion to others (facing) things I haven’t experienced.

“My life has been pretty easy…I probably have ‘compassion deficit’,” he adds with a smile.

But it wasn’t long before Layne began to see God softening his heart toward others.

Layne before chemo

He started reaching out to patient families at the cancer center and trying to encourage them by gifting a copy of 50 Days of Hope. (Layne admits that when he first was given that book, he didn’t plan to read it because he often finds “devotionals to be cheesy and shallow.” But eventually he did open it up and instead found God inspiring him through the pages.)

He also shared the book with his oncologist, a Christ-follower, who now has multiple copies in his waiting room for patients to read or take home.

Layne is especially excited to share his journey and help others find hope. He sends out personal updates, not only to his congregation, but to pastors in a large network of area churches he leads, as well as the school board on which he serves.

“I’m understanding scripture in a new way and feel like God is giving me insights for myself and for others,” he explains.

“God told me ‘I want you to look for armies of people who don’t know Christ’,” he adds.

Layne finished chemo a couple of months ago and radiation therapy last week, but won’t know for certain until next month’s PET scan whether the cancer is completely in remission.

Still “whatever happens my life is in God’s hands,” he declares. “I choose to place my trust in God whether I’m experiencing the sunshine of life or encountering storms.”

Sounds like Layne’s “compassion deficit” is no more.
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Open in your browser to hear one of Layne’s favorite songs: “Firm Foundation (He Won’t)”  with Maranatha Music.

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May 20

Celebration Time: My Oncologist has cancer Part 13

Well, the milestone that no physician thought possible–but for which family, friends and patients prayed–is here.

Tomorrow, May 22, 2025, is the fifth anniversary of Dr. Marc Hirsh’s diagnosis of a stage 4 very rare neuroendocrine tumor of the thymus!

Marc doesn’t have a party planned–life itself is enough of a celebration for him.

He and wife Elizabeth–plus Golden Retriever Boondock–recently returned from two weeks of traveling south in their camper van–a trip that  seemed impossible five years ago.

Marc clearly remembers how he felt when diagnosed at age 69.

“When I saw  that it had invaded into my heart and was in my lung, I was pretty pessimistic,” he recalls. “I was having a lot of trouble breathing, short of breath and in a lot of pain. In the hospital when Elizabeth asked me if it was curable, I told her I probably would be dead in three weeks.”

The “lowest point” emotionally came during his appointment with an oncologist at Johns Hopkins, where Marc was “very hopeful” he would learn something optimistic.

Instead, the doctor recommended an extremely toxic chemotherapy regimen which had “no data that it was curative.”

“I still have the oncologist’s report…and it said that if I didn’t do what they said, I’d be dead soon.”

But Marc refused the recommended treatment.

“I knew how incredibly toxic it was and I knew how weak I was,” Marc explains. “I knew how immuno-supressed I’d be and we were in the middle of COVID. I likely would have had to spend a lot of time in the hospital and the virus easily could have killed me.”

Instead he devised his own protocol of radiation/hormone therapy/oral chemo and what had been a grapefruit-sized tumor was the size of a lime at his check-up last year.

Last week on their trip, Marc celebrated his 74th birthday with a quick stop to purchase the “State Dessert of Maryland.”

“I bought myself a Smith Island Cake and I froze it and am eating a piece every day,” he confesses with a smile.

Elizabeth added that “he’s eating it all by himself” as she  gave up  sweets decades ago!

Marc says the realization that he might not quickly die from the cancer has dawned slowly.

“After about two or three years of (the tumor) being completely stable or slightly smaller. I started thinking I might actually be cured and there’s no active tumor left,” Marc explains.

“But I’m under no illusion,” he continues, “that the cancer definitely will never come back. I have a check-up June 10 so we will see how it looks.”

In the meantime, he has joined the local senior center’s twice-weekly over-60 basketball league.

“My wind is not what it used to be and the games are pretty intense and exhausting, but I’m enjoying it.”

When I asked Marc if he had any encouragement for those facing daunting health circumstances, he replied: “No matter what the so-called experts say, there are exceptions to generalities.

“Keep living for the moment, each day, each hour, each minute, and try to find meaning and joy no matter what the situation.”

Marc, who for 30+ years has shared his faith as a Jew who believes in Jesus as Messiah, says his diagnosis reminded him that others would see whether his actions were consistent with his words.

“I knew I had the opportunity to be courageous and to live life to the fullest,” he adds. “I could be an example of how to deal with what life hands you.”

(Life has handed Elizabeth a challenge, too, as she was diagnosed in 2023 with Parkinson’s Disease and needs Marc’s assistance with tasks she no longer can do.)

And at this 5-year milestone, for what is Marc most thankful?

“I’m incredibly grateful to God that He allowed me to be here for Elizabeth after all she’s done for me.”

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Open in your browser to hear Rich Mullins, Marc and Elizabeth’s favorite Christian artist, sing “Awesome God.” It seems appropriate on this 5-year “Cancerversary” to acknowledge our awesome God, and Rich sitting at the piano sharing a little about his faith before he sings reminds me of what Marc has done at our prayer support group concerts for the past three decades.

 

 

 

 

Mar 11

Are you as contented as a 2-year-old?

A dozen years ago I was on our deck serving an early morning breakfast to my oldest grandchild, Bauer, 2½. Thanks to my husband’s green thumb, the deck was bursting with beautiful blooms and as I stumbled around, chiding my foggy brain to wake up, little Bauer let out a small toddler sigh.

“It’s lovely out here,” he said with a sweet smile. “We have everything we need.”

Ah, contentment.

A bowl of multigrain Cheerios with milk, a Lightning McQueen sippy cup of juice, the beauty of nature, and a day with grandma—what more could you possibly want?

Maybe a clear PET scan? Perhaps a day without turmoil? How about not struggling with depression? No more medicine side-effects would be nice. An insurance company that didn’t balk at paying for what the doctor ordered would be really great.

It’s difficult to have childlike contentment when we live in a grown-up world where in the U.S. alone, a new cancer diagnosis is made every 30 seconds and  someone is identified with Alzheimer’s every 65 seconds. On top of those sobering statistics, every second the political fight rages around us seemingly unabated.

It’s not easy to find contentment while watching ourselves or a loved one deal with  physical/emotional/mental assault.

I remember many years ago, our dear friends, Don and Jean, found their world turned upside down when she was diagnosed with inoperable, stage 4 non-small cell  lung cancer. The retired schoolteachers frantically began searching for contentment.

“I was shocked,” she told me at the time. “I thought I was too healthy to get cancer. I was doing all the ‘right’ things to be a healthy person—never smoking, eating right, exercising, weight control, regular checkups and all that.”

After that frightening diagnosis, both Don and Jean tried to live in the moment, but the admonition to “take one day at a time” was “the opposite” of their teaching careers.

“As teachers we always had to look ahead and plan for another day,” they explained.

Learning to live one day at a time—and live it to the fullest (like contentedly watching a Maine vacation sunset)—was not an easy task.

“I think both of us in our own way just turned this whole thing over to God,” Don recalled. “For me it was putting total faith in His plan—knowing it’s a perfect plan—even if I didn’t understand it all.”

I’ve thought often about my grandson’s contented sentiment, especially mornings when I sit down with my to-do list, ready to organize everything that I think needs to be done that day! Sometimes I pause, smile to myself and say: “It’s lovely here and we have everything we need.”

Perhaps that’s a sentiment with which you could start your day?  The words of a toddler could be described as childish, but if you have total faith in a loving God, they can become childlike trust.

I remember that peaceful feeling when my newly delivered, just-nursed firstborn slept in my arms. All the hours of terrible back labor and exhaustion were forgotten. The future still was unknown, but with the psalmist I could say:

 

Of one thing I am certain: my soul has become calm, quiet, and contented in You.
Like a weaned child resting upon his mother, I am quiet. 
Psalm 131:2 The Voice Bible

And on this promise I still can rest:

Keep your lives free from the love of money and be content with what you have, because God has said,
“Never will I leave you; never will I forsake you.” Hebrews 13:5

 It is lovely here in my soul and with God I have everything I need.
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Please open in your browser to hear the music video “If I Got Jesus” by Ben Fuller. (I liked the words and music so much, I decided to ignore the grammar mistakes! 🙂 )