Author Archives: kdneva

Bowling

February 7, 2014 by Kristin Neva

IMG_5481-001Todd bowling at Sara’s 8th birthday celebration last weekend reminded me of what he wrote in our memoir Heavy: “I have time to build memories, to live well. My children will see a man who lived to his last breathe. Though I have limited physical strength, I can demonstrate a mental toughness. So much of life is out of my control, except for my attitude. Shouldn’t this be how we all live, whether we have six years or sixty? I have decided to live well.”

Heavy Now Available on Amazon.com!

Purchase Heavy on Amazon.com

February 6, 2014, by Todd Neva

“We read to know we are not alone,” the character, C. S. Lewis, said in the movie Shadowlands.

In June of 2010, I was diagnosed with ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neuro-muscular disease that results in total paralysis and eventual death, usually in three to five years. In our grief, my wife Kristin and I were comforted by books written by others who face grief and disability.

In addition to reading, we wrote of our thoughts, feelings, and experiences during the year after the diagnosis. Kristin wrote in her journal and we both blogged.

Our writings have found their way onto the pages of a book, Heavy, Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS. Many other books tackle the topic of facing a terminal disease retrospectively, often from the spouse’s perspective, or from the patient after some time has passed. Heavy, instead, follows the gut-wrenching first year after the diagnosis. Our story is told from my perspective with journal entries by Kristin at the end of each chapter.

We read that, when facing ALS, it often takes a year for some sense of (new) normalcy to return. We couldn’t write this book today; it could only have been written when the emotions were raw. And it is our hope that our story will help you—in your suffering, in your grief—to know you are not alone.

Heavy is now available on Amazon.com in paperback and on Kindle.

Please check it out, and if you find it encouraging, we would appreciate if you would write a review.

Todd

 

God With Us

December 25, 2013, by Todd Neva

Seven centuries before the birth of the Christ, Isaiah, the Prince of Prophets, wrote, “Behold, the virgin shall conceive and bear a son, and shall call his name Immanuel.” Immanuel, God With Us, was our Lord Jesus Christ, with humanity for thirty-three years, and then gone.

The humanity of Christ, from his lowly birth to the passion of his crucifixion to his departure from Earth, shows the nature and character of our God: a personal God, from whose image we’ve been created, whom we call Abba Father. Our God relates with us through our humanity, through life and death. Jesus Christ was with his disciples, and on the eve of his crucifixion he told his friends, “You will weep and lament.”

He knew the sorrow of his disciples that would follow his death. He knows your sorrow when you lost your friend, your spouse, your mother, your father, your brother, or your sister…

Christmas is a time when we gather with family. It is a time of joy and celebration. But for many, it is a time of sadness when there is one extra chair at the table.

bI am keenly aware that the memories I make now with my family will one day turn into sadness. But the sadness will turn to joy as we meet again in Heaven.

Jesus Christ reassured his distressed disciples, “You have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you.” (Jn 16:22) Jesus prayed to his Father that he shall send a Comforter that he may abide with us forever. I pray for those whose Christmas is flooded by memories of a lost, loved one that they would know the Christ and be comforted by the One who knows their sorrow.

Thankful in All Circumstances

November 28, 2013, by Todd Neva

IMG_5469One thousand nine hundred fifty years ago, from a dank, dim Roman prison, chained to the wall, wrongly charged, awaiting trial, but as a Roman citizen likely facing a relatively humane execution of being beheaded, the Apostle Paul wrote to the church in Ephesus, “Always give thanks to God the Father for everything in the name of our Lord Jesus Christ.” And to the church in Thessalonica, Paul wrote, “[G]ive thanks in all circumstances; for this is the will of God in Christ Jesus for you.”

One hundred fifty years ago, a nation divided, after just two years of civil war, 366,000 men already dead, and the bloody carnage of 46,000 Americans in one epic battle alone near Gettysburg, Pennsylvania in July of the prior summer, millions of Americans still enslaved, President Abraham Lincoln invited his fellow citizens to “set apart and observe the last Thursday of November, as a day of Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens.”

Today, three and half years since a terminal diagnosis, heading toward the point of total paralysis, continued loss of independence, I celebrate this day, set aside one hundred fifty years ago, to give thanks, mindful that the Apostle Paul and President Lincoln were each brought to his knees before the Almighty God, humbled by the pain and despair of this world, yet seeing God’s goodness and provision. God doesn’t promise a pain-free life. God doesn’t promise that we will never face circumstances more than we can bear—just that He will not let us be tempted beyond our ability. And here is a temptation: to be ungrateful.

God, give me the strength to be thankful in all circumstances in the name of my Lord Jesus Christ. Amen

I Don’t Want To

November 12, 2013 by Kristin Neva

20100217 045-1Sara has been playing the violin for almost four years now. We started lessons just before her fourth birthday. Trying to coach a four-year-old to correctly hold the bow was painful… for both of us. But we got through those first lessons, and then on to the Twinkles and beyond. It was tough going at times, but Sara has always loved music and she enjoyed the violin, especially when putting on a concert.

Lately, we have seen a lack of enthusiasm for practicing. “I don’t want to practice. I don’t want to play violin.”

Sometimes I wonder, “Is it worth the effort?” But I think back to when I was a kid, and I wish I had made more progress on the piano and guitar. So we keep going with the violin.

The other Thursday, Sara came out of her reading orchestra class, her face lit up. “Mom,” she said, wonder in her voice, “playing first violin was extraordinary.”

We got home and she played the piece they had been working on for me. “I know that didn’t sound like much,” she said, “but when the other violins were playing, and Miss Maggie was playing, and the cellos were playing, it was amazing.” She had gotten a glimpse of the beauty.

In Hebrews 12 we are called to endure hardship as discipline. God disciplines those He loves. Sometimes we think of discipline as punishment: A time-out; A spanking. We view the difficult circumstances in our lives as consequences for the choices we have made.

Not necessarily. Discipline is training. Learning to play the violin requires discipline. Learning math facts requires discipline. Though Sara would rather be reading or drawing, as parents we require her to do things that she would not choose because we want her brain to expand and develop. The writer of Hebrews says that God’s discipline in our lives is for our good, that we may share in His holiness.

I can relate to how Sara feels because I often don’t like this journey we are on. It’s painful. I don’t want Todd to have ALS.

But there are times when I get glimpses of the beauty. On occasion, I grasp a truth that I never really knew in my heart before, though I may have read a verse dozens of times. At times, I empathize with someone’s pain in a way I never did before and I know that our suffering has expanded my heart. A few weeks ago, when Todd preached on suffering at church, I got a glimpse of the beauty of our situation, and that uplifted my spirits.

Of course, with Sara, the day after “playing the violin was extraordinary” she didn’t want to practice. I reminded her of the beauty she had experienced. “I was wrong,” she said.

I can relate to that because I, too, am up and down. It is easy to lose heart. “Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart,” the writer of Hebrews says. We can find comfort in Christ, in His suffering.

“No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.” Do we submit? Do we surrender? “We have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live.”

The training is a process. Just as Sara doesn’t learn her math or her violin overnight, we don’t mature overnight either. But we press on.

Todd’s sermon on suffering:
http://www.evangelbaptist.org/wp-content/uploads/2010/03/13-10-20-head-and-heart-of-sufferring.mp3

 

Rolling Home

October 14, 2013, by Todd Neva

roll houseThe sun set as I was mowing the last acre of grass.

An hour and a half earlier, Kristin left with the kids for AWANA after warning me to stay in the house lest I fall outside. I rebuffed her, saying, “It’s a beautiful evening, and it’s supposed to rain tonight. I want to mow while I can.”

“You better take your phone. If you’re not home when I come back, I’ll come looking for you,” Kristin said, not happy with my stubbornness.

“Getting on is the most dangerous part, and I’ll do that before you leave.”

I used ten minutes of twilight to finish the lawn. It was getting cold. With the sun gone, it felt like the temperature dropped 10° from the already chilly 65° autumn day. My weak fingers stiffened and became virtually useless, but I finished nonetheless, and then headed over to my partially completed shed. There was a 40% forecast of rain that night, so I wanted to store the mower.

Approaching the shed, I saw that there was a ladder blocking the entrance, as Kristin had earlier stored the apple cider press in the shed attic. Stiff and cold, I cautiously stepped off the mower, being sure to have my phone in my pocket in case I fell. I pushed the ladder out of the way, then wobbled back to the mower anxious of the ascent back onto it. I thought, “I best take the phone out of my pocket, because if I need to use it, I won’t be able to get it back out once I sit down.” So I set the phone on the seat, put my left foot onto the mower deck, kicked up with my right foot to get some momentum—then fell backwards.

My head slammed against the hard-panned ground. I was dazed, but okay. Then I looked up to see my phone still sitting on top of the mower, with the headphones cord torn free with the plug still in the jack. I scooted on my back closer to the lawnmower and attempted to reach up to the phone—arm not long enough. I tried to sit up, but just couldn’t muster enough strength. Tried to sit up again. I couldn’t do it.

I repeated called for help, “ERIK!,” hoping that Kristin’s cousin was outside his house, a quarter of a mile on the other side of the field, smoking a cigarette. I called, “LANI!” I called, “DAVE!” I couldn’t see my in-law’s driveway from my vantage point, face against the ground and a six-inch mound of the drain field between me and their property, but they were either in their house or gone by now to their Bible study.

As I yelled out, coyotes howled retorts. They seemed to surround me, cries coming from the West, the North, and the East. They could hear fear in my voice, I imagined. I heard rustling in the woods to the North, something that sounded big, but probably just a squirrel. I heard faint barking from Comet, our four-month-old golden-doodle, coming from inside our house.

I didn’t have much time left before it got dark and much colder. It must’ve been quarter to eight, and Kristin wouldn’t be home until eight-thirty. I rolled over to the dog house and attempted to use it as leverage to get up. I couldn’t do it. I saw the dog’s leash hanging from his dog run and grabbed hold of that in another attempt to get up. I couldn’t do it. I looked back at the lawnmower, thinking that the engine may provide some warmth if I had to wait forty-five minutes for Kristin. Then I looked over to the house, one hundred fifty feet away.

Coyotes howled.

“I can roll to the house and at least take cover on the patio,” I thought. “The edge of the house is one hundred fifty feet away. The garage is twenty-six feet wide, and another twenty-six feet long. That’s about two hundred feet, and I can cover nearly four feet per roll, an advantage of my girth, finally.” I did the math—it would be about fifty to sixty rolls. “I can do it.”

Roll after roll, I rolled until I couldn’t throw my right leg over anymore. Then I scooted around to roll the other way, already more than halfway there. I rolled up a small hill to the driveway. I rolled across the crushed mine rock driveway. I rolled down the sidewalk alongside the garage to the patio. Comet barked ecstatically. With my last bit of strength, I kicked off my shoes, flung my leg up onto the latch of the front door, and opened it.

Comet rushed out with his tail wagging and licked my face. He grabbed a chew toy and expected me to play with him. Then he saw my shoes, grabbed one and took off running, because he knew he shouldn’t have it. I scooted into the house, called the dog back in, hoping he’d bring my shoe. He came, but without the shoe. I closed the door and rested on the floor of the vestibule for a few minutes. I’m not sure how long the trek took, but the sky was dark and the house was darker. I reached up with my foot and turned on the lights.

I thought to myself, “This isn’t going to look good when Kristin comes home. She warned me.”

I scooted and rolled farther into the house and found a comfortable place to rest on the living room floor. I made a few more attempts to get up using couch cushions that were left on the floor by some earlier fort builder. But even with the props, I was still too exhausted. Kristin would likely be home soon.

Another five minutes passed, and I heard the door open. As Kristin came through the kitchen, I calmly asked, “Hi, how was AWANA?”

“Oh, you fell! Well, I’m glad it was inside on the living room rug.”
Later that night, I recounted the story to Kristin as Isaac listened on. “Your dad’s a fighter, Isaac. Real strength is what you have up here,” I said as I leaned my head down and tapped it with my finger.

 

Assisted Hugs

by Kristin Neva, October 7, 2013

tow-a-scooterTodd and I sat with the kids at the kitchen table as they finished their bedtime snack. “Go get your pajamas on and get ready for bed,” I told Sara and Isaac.

“Mommy, hold me.” My tired four year old sighed and reached up for a hug.

“Okay Isaac.”

“I want you to hold me too.” Sara looked in dismay at my full lap. Lately, she has felt a little jealous of the attention Isaac gets—at his birthday party, when we go to town and people comment on his cute fireman outfit but don’t acknowledge her, when he gets to make egg carton caterpillars for homeschool while she needs to do math and writing.  It’s not easy to be seven.

“Sara, come sit on my lap,” Todd said.

She eagerly complied.

“Now, wrap one of my arms around you,” Todd told Sara. “Now the other one,” he said.  “Now squeeze my arms together.”

Sara squeezed her Daddy’s arms around her and smiled.

“Sara, do you know how much I love you?” Todd asked.

“All the way to the moon and back.” She waited expectantly for the next question.

“Is there anything you can do to make me love you more?”

“No”

“Is there anything you can do to make me love you less?”

“Yes. I mean ‘no.’ I was thinking of the last question.” Sara laughed in anticipation.

“Is there anything you can do to get a big tummy.”

“Eat too much!” Sara exclaimed.

Todd gives assisted hugs now, but he still has his sense of humor and is passing it along to the kids.

*

Earlier this summer we drove along the bumpy back roads to the state park.

“Mom, how do people live on such bumpy roads?!” Sara asked as we bounced along. “I’m glad our road isn’t so bumpy.”

“Me too. But if we lived on a bumpy road, we’d adjust to it.  People adjust to things and then it seems normal to them.”

“You mean like I adjusted to moving from Racine.”

“Exactly, and we had to adjust to Daddy having ALS.”

“That wasn’t a hard adjustment for me,” she said.

“I’m glad,” I said, “It was a hard adjustment for Daddy and me.”

When Sara was four we told her that Daddy had ALS, that his arms were weak and that his legs were getting weak, that the doctors didn’t have any medicine to make them better.  But four year olds don’t have much of a concept of time so we didn’t talk about life expectancy.  Todd’s ALS was slow progressing and he wasn’t going to die tomorrow.

Now that Sara is seven and a half, we felt that it was time to share more information, especially because Todd is going to preach at church on October 20. He is going to talk about God’s purpose in suffering and share our story. He will talk about the diagnosis and the shock one feels when he is told that he a disease with a 3 to 5 year life expectancy. We didn’t want Sara to be surprised by something she heard from the pulpit or from one of her church friends.

So we had the dreaded conversation with Sara, both of us sitting in her bedroom while Isaac watched a movie in the living room. We told her that a lot of people with ALS only live for a few years, but some live longer, like 10 or 14 years.  We said that Daddy probably won’t live as long as Grandma and Grandpa but we don’t know how long, that Daddy’s breathing is still strong so we don’t need to worry about it today.  Sara didn’t seem too upset but she said the conversation was awkward.

The hard thing about this bumpy road we now live on is that it keeps getting bumpier.  Daily life is getting more difficult for Todd and for me as his caregiver.  He needs help now with simple tasks and has given up driving and with that a lot of independence.

We attended an ALS clinic in Duluth at the end of September.  Todd’s vital force capacity (a breathing measurement) is still strong at 90%. He started at 104% so it has declined about 5% each year.  70% is where breathing assistance comes into play. 40% is where you can get hospice care. ALS usually progresses at a steady rate, so we are optimistic that Todd will outlive our first neurologist’s prognosis of 5 years and we continue to pray for a miracle, and for a cure for all those with this disease. We covet your prayers as this is a difficult journey physically and emotionally.

God Can

August 15, 2013 by Kristin Neva

RocksIn the Fall of 2010, we went to Northern Minnesota so Todd could hunt possibly one last time. I hit the Deer Widows’ Craft Sales with Todd’s mom. Still reeling from Todd’s diagnosis and the loss of our dreams, some engraved beach rocks caught my eye. I found all of our names and another rock that said “Our Love Is Forever.” As I paid for the rocks, the seller reached down and grabbed a rock from a basket. “Here’s an extra one. You can have it.”

The rock was engraved with the words “God can.”

Back at home in Wisconsin, I set the rock on the window sill above my kitchen sink and read the words on it often. We were praying for Todd’s healing, praying for our house to sell, praying for peace and joy.

Over a year later our house finally sold and I packed the rocks amongst other miscellaneous items. We moved to my hometown, built a handicap-accessible home across field from my parents, and settled into life in Upper Michigan.

Another year has passed and I am still getting organized. I came across the rocks a few days ago. Smiling, I placed them on the kids’ bathroom counter.  Sara and Isaac excitedly found their names. Sara read the writing on the other rocks. “God can,” she read. “God can do what?  What does that mean?”

“You tell me,” I said.  “What can God do?”

“He can turn water into wine. He can walk on water. He can feed 5,000 people. He can heal.”

Yes. God can heal.

I am teaching Sunday School at our church this summer. The curriculum for last Sunday paired the story of Jesus’ healing the blind man in Mark 8 with the verse Philippians 4:19, “And my God will meet all your needs according to his glorious riches in Christ Jesus.”

The curriculum pointed out that just as Jesus met the blind man’s need for healing, He will meet our needs. So where’s the healing for Todd?

To put Philippians 4:19 in context, Paul writes in verse 11: “I have learned to be content whatever the circumstances. I know what it is to be in need…”

Wait a minute. Paul was in need? Paul was telling the Philippians that God will meet their needs even as he was in prison, at times hungry and in want.

Paul goes on to say, “I can do everything through him who gives me strength.”

God promises us strength. Maybe we get healed. Maybe we don’t.  But He is with us, giving us strength.

We continue to pray for Todd’s healing yet the ALS slowly and relentlessly progresses. At the same time we see God’s hand in the timing of our house sale, in the building of our house with people volunteering to help with various projects at just the right time, and now we are in a place where we have the support of nearby family and are building new friendships.

Paul saw God using him to share the message of salvation through faith in Christ. And I am finding joy in passing on the things I am learning from God’s word to the Sunday School kids, helping prepare them to face adversity, teaching them that although life doesn’t always go the way we would choose, even in the midst of prison or pain, we can praise the God who is with us, giving us strength.

So what was the point of all those healings and miracles that Jesus did? To show us that Jesus is God’s son, the promised Savior. Jesus fulfilled prophecy when he healed people, he showed love and compassion to the sick and disabled he came in contact with, but He didn’t go around seeking out people to heal. In fact, in Mark 8 He told the blind man not to go into the village. He didn’t want the emphasis of His ministry to be His miracles when He had something much bigger on His mind. Jesus came to give us spiritual healing through faith in Him.

After Jesus healed the blind man He asked Peter, “Who do you say I am?” Peter told Him, “You are the Christ.” Jesus told the disciples not to tell anyone and then began to teach them about what was coming: His death and resurrection, the reason He came to this earth.  He tells the crowd, “If anyone would come after me, he must deny himself, take up his cross and follow me.”  Our Lord suffered and died on a cross for us.  Here on earth, we too suffer, and we follow Him.

Great Job Daddy

August 5, 2013 by Todd Neva

Draw_Truck“Daddy, draw me a truck,” Isaac said as he plopped his book How to Draw Things That Go on the table.

Holding a pen between my middle and ring fingers, I drew a pickup truck. Even though the lines were squiggly, looking like the work of a child, Isaac affirmed me, “Great job, Daddy. I will color it blue, like your truck.”

After a few crayon scribbles on the fender, he slid the paper and crayon over to me and said, “Color it, Daddy.”

I colored it, with a few scribbles outside of the lines, but not completely before my hand got too tired.

“Great job, Daddy, you did really good.”

What kid delegates his coloring?

 

Recently, my cousin Greg and nephew Adam visited us. I put them to work as I often do when I have visitors. I would do the work myself, but my hands don’t work. I have weeks to think about a project before having a willing visitor, and then with the project clearly mapped out in my mind, I hover over him and direct the work.

We used my father-in-law’s backhoe on a few projects around the property—knocking a hole through the rock wall to allow for drainage, digging the topsoil out from the future site of a shed, and removing old stumps from harvested Christmas trees.

On the last project, I directed Greg’s backhoe work from my lawnmower with Isaac standing in front of me. Greg positioned the backhoe in front of a stump and started to move the boom into position.

Isaac yelled out, “You need to come this way a little bit.”

“Son, you have a future in middle-management.”

 

Later, I told Greg, “You had two foremen and one of them is three. I’ve never seen a three-year-old delegate work. He even delegates his coloring to me. What three-year-old would rather tell somebody to color than color himself?”

“A three-year-old who wants to be like his daddy,” Greg said.

Three Years

June 17, 2013 by Kristin Neva

Three years ago last Tuesday, Todd went to an ALS specialist leaving me at home with the kids, confident that doctor would say he didn’t have ALS. Todd returned home with news that turned our world upside down.
The last three years have been hard, yet good.

Todd was able to continue to work past his goal date at SCJ.

We were able to sell our Racine house in God’s timing and build the Christmas Tree House next to my parent’s.

We quickly found a church that was a good fit for us and made friends. Our children plugged into life in the U.P. with activities and friends. Todd has been homeschooling Sara.

We wrote a memoir about our experience of learning to live with a terminal diagnosis and are moving towards publication. God has brought us into contact with just the right people at the right time: most recently a childhood friend of mine who has experience type-setting and a graphic designer who is the mother of one of Sara’s violin classmates.

We have been able to encourage and support a few other people who are on similar journeys.

God has blessed us with people who have volunteered to come and give Todd massages that help his muscles relax, make his muscles more functional, and give Todd more independence.

Isaac is turning four this summer. It is hard to believe that he will be the same age Sara was when Todd was diagnosed.

Todd is doing well physically considering the diagnosis. His breathing is still strong. He can still walk short distances, often with a cane now. He needs help with some things, but can still feed himself with thick-handled silverware. He can lift a small glass of water if the glass is plastic and his elbows are on the table.

For us, the ALS progression is slow, but it continues to attack Todd’s functionality. Todd purchased a lawn tractor with power-steering last year, and it worked well for him. He used it once this year and then realized steering fatigued his arms. He was able to sell it on Craigslist quite quickly and now has ordered a zero-turn lawn tractor that is controlled with one joy-stick that happens to be on the right side, his strongest hand. He is looking forward to that arriving soon.

I suggested to Todd last week that he write an entry reflecting on the last three years. “Good idea,” he said but then he got busy and last Tuesday passed rather un-remarkably. “I guess that’s good,” Todd said as I was reflecting on the three year anniversary of that difficult day. “We are just living life.”

Most recently, Todd had a young guy help him do some landscaping around the house. He also coached him in putting together a play set in the backyard for the kids. That was a promise that went along with the move when Sara was sad that we would not be within walking distance of a park anymore. “We’ll have a park in our backyard. We’ll put up a swing-set.” So now we have one and the kids are enjoying it.

We are thankful to be here in our house. Todd says sometimes he doesn’t realize how far the ALS has progressed because our house is so accessible. We also enjoy having an occasional date night when the kids go across the field to Neenee’s and Papa’s for a sleepover.

Life is hard, but it is good.