Category Archives: Uncategorized

Mr. Mayor

I am Mr. Mayor. Isaac places a Lego minifigure in my useless, supinated palm. I announce, “Hello, Lego City.” (Hear in your mind Robin Williams’s voice from Good Morning, Vietnam.)

Play begins, usually involving some scenario were a bad guy gets away and Mr. Mayor calls the police chief. “A bad guy got away. Help!”

But something was missing, Isaac thought — Mr. Mayor’s chair.

I’ve Lived to See My Son’s Graduation

June 11, 2016, by Todd Neva

IMG_2546In our memoir Heavy, Kristin described a dream she had months following my ALS diagnosis on June 11, 2010. “God called to me and said, ‘Kristin, I have something better for Todd and something good for you and the kids.’ ”

As she tried to wrap her mind around the three-to-five-year prognosis, she wrote:

Heaven really is better. We grieve that Todd will miss out on Sara’s and Isaac’s graduations, weddings, and our grandchildren. It doesn’t seem fair for the kids to grow up without their dad. But then I think, ‘Some people live through those events without joy. What good is that?’ We are living with joy today, in the midst of sorrow.

We’re still living with joy today, and the bonus is that I got to see Isaac’s graduation.

Sure, it was his kindergarten graduation—they didn’t let me graduate until I was eighteen—but it was still pretty cool considering it was two days shy of six years since the diagnosis.

And our kids are growing up with their dad.

Yesterday I was less than masterful at fathering Sara, evoking tears as I made her give up an electronic device. Then I thought, I’m like a normal father with a ten-year-old girl who is mad at him.

I’m normal in many other ways, except I stay home a lot—almost all the time.

But I’m here when they come home from school. I ask about their day.

It’s important to me that they see I’m not idle. If you ask Isaac what I do, he’ll say, “He preaches.” Sure, only once a quarter or so, but he sees me prep for weeks ahead of time.

I fill my day with other projects, too, using a head mouse and voice dictation software to access the computer.

I don’t get the best nights of sleep, now that I’m unable to turn in bed. I sleep in late, I take naps, and I need personal care throughout the day. I am still severely disabled, but I try to stay active.

Maybe that’s why today is never as bad as I imagined it would be. I keep thinking, “If it would only stop, I can deal with this.” It doesn’t stop, yet I adapt.

Heaven may be better, but today is still pretty good.

To commemorate six years of life with a terminal disease, we’ve lowered the price of Heavy e-book to 99 cents for the next month.

Heavy-cover-small99cent

 

The Long Haul

April 18, 2016, by Kristin Neva

IMG_8164My faith is shaken when I’m sleep-deprived.

Immobile in bed, Todd’s joints ache, and he calls me to turn him. I wake in the middle of a sleep cycle, and he goes back to sleep, but my brain is in a fog the next day.

Are you there God? What are you doing? I thought You were supposed to supply our needs. I have a basic need for sleep and I am not getting it.

I plead with God for healing, a cure for ALS, or if not that, then at least sleep—for both of us. We’ve tried different mattress overlays and he even took a $37,000 turning bed for a test drive one night. Nothing works to get him comfortable, and we have concluded there is no solution other than turning him a couple times each night.

Todd’s ALS is progressing slowly, and for that we are thankful. But now we are in the long-haul of managing caregiving for a quadriplegic.

Over the last year and a half, I’ve become increasingly sleep-deprived due to being up at night turning him in his bed. I’ve felt as though my faith is eroding, and I’m often overwhelmed by the suffering and pain in the world.

The morning of March 22, I had just returned from dropping the kids off at school when the phone rang. It was my mom. She had been awakened by the police who told her my dad had been found unresponsive in his truck.

I prayed, “Jesus, Jesus, Jesus, help us, Jesus,” as I dressed Todd and lifted him out of bed with the sling and hoist. We rushed to the hospital and arrived just as my mom was being escorted to the room where my dad’s body lay.

As the three of us sat in tears, I said, “The tomb is empty.” Because of Christ’s death and resurrection, we believe my dad is healed and with Jesus.

I had a sense of relief, even as I am often filled with doubt, that there, in that moment, I still had faith.

Not faith in a Sunday-School version of God where we follow him and life goes well. Not faith in a Santa-Claus God who gives us goodies. Not faith in a fixer-God.

But faith in a Risen Savior.

Faith that one day things will be okay because Jesus lives. Faith that my dad has been resurrected because he placed his faith in Christ. Faith that one day all of us who trust in Christ will be whole and healed.

And I felt hope. Hope because my dad is with Jesus. Hope because the difficulties in this life are temporary.

My faith is reborn as I think about my dad’s life. At his funeral, we chose for the Scripture reading 1 John 3:16-18. “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth.”

My dad loved with actions and in truth.

Every spring he traveled to Reynosa, Mexico, ministering to the people in the Colonias. He took kids who visited from the inner-city fishing and boating. He drove to Canada to buy a used range-of-motion machine and spent months refurbishing it so Todd could use it in his wheelchair. When I went on a grain-free diet, my dad found recipes online and baked Paleo bread, birthday cakes, and pizza for me. He was a man who chose to serve—to be the hands and feet of Christ to those he came in contact with.

When I reflect on my dad’s life I see the answer to my faith-crisis questions. God works through people like my dad. He wasn’t flashy. He was a down-to-earth guy who just kept loving people.

That’s how I want to live too. As I serve Todd and my kids, I want God’s love to be made complete in me.

And there are many others who are the hands and feet of Christ to us as we face ALS.

Weeks before my dad’s death I had scheduled a nighttime caregiver through a home health agency. The night she came ended up being the night before my dad’s funeral. For the first time in a year and half—the night before one of the hardest days of my life—I slept eight hours and felt rested.

Since then, Todd has recognized what a difference sleep makes for me. For the last couple of weeks he has tried to tough it out most nights, which means he lies awake for hours at a time, uncomfortable because he is unable to turn. He’s in a fog the next day.

This is what it’s come down to. Either he sleeps or I sleep.

The time has come for us to have more help at night so we can both get some solid rest. On a few nights, we’ve hired a home health caregiver from an agency to come from 10 p.m. to 7 a.m. We’ve been pleased with the nursing students the agency sends.

As we’ve shared our sleeping difficulties with a few friends, God’s people have responded with action. Some have given us money—it costs $180 to hire a professional caregiver for a night. Ten-thousand dollars would cover one night a week for a year. A friend has said she’d like to organize an effort to raise funds for caregiving help, and a retired nurse volunteered to take an occasional over-night shift.

Also, we are exploring building an addition off Todd’s bedroom so we would have a room for volunteer and paid caregivers to be within earshot of him. Several people have offered to help us build the addition.

God’s love is working through his people.

Stay tuned for details about our caregiving fundraiser and our building project.

White Suit Pink Shirt

20110710A 063 memorialMarch 24, 2016, by Todd Neva

Kristin’s father, David Edward Siirtola, passed away a couple days ago. This photo epitomizes who he was, although he only wore that suit once for Ebonnie Conner’s wedding. Normally, he wore jeans and a button-up, long-sleeved, patterned, work shirt. He was a well driller. A born-and-raised Yooper. A Finn. That’s what he was, yet the picture of him in a white suit and pink shirt best describes who he was.

Dave loved kids. He went out of his way to give kids experiences they’d remember. Kristin brought mission kids to the UP, and Dave took them fishing. His niece would visit, and he’d let his great-nephews play with his ToolCat. He let Isaac operate his backhoe. He showed us how to make apple cider. He tapped Maple trees with Kristin and the kids. Swings for my kids. He plowed sledding hills for them. He’d give the shirt off his back to help people in need. The Mexico mission trips. My Quadriciser — he drove to Winnipeg, Manitoba, to purchase a used machine, and then rebuilt it so I could use it in my wheelchair. Over the last couple days, I’ve heard similar stories from others.

About twelve years ago, a girl who grew up in the inner-city of Milwaukee was struggling in school and had, in fact, dropped out. Kristin had seen that cycle of poverty play out before, and we wanted something better for Ebonnie. We asked if she’d be willing to move to Hancock to finish school. “You can live with my mom and dad,” Kristin told her, not ever doubting they’d take her in.

Dave loved Ebonnie, and he became to her a father figure. In her senior year, she wanted to go back to Milwaukee to attend prom. He chauffeured her and her friends around town, rolling out a red carpet — literally — wherever they stopped. Years later, she asked him to be in her wedding.

Of course he said yes.

He might not have known that he was to wear a white suit with a pink shirt. But he would’ve said yes anyway. That was Dave. That’s how he showed his love.

He was a great man. And I miss him already.

She’s Not Me

January 22, 2016, by Todd Neva

Kate reacts in horror after seeing her fellow pALS on a vent.

Kate reacts in horror seeing her fellow pALS on a vent.

“You’re Not You” (2014, Hilary Swank and Emmy Rossum) was the hardest movie I’ve ever watched. I stopped it two times before finally buckling down and enduring through it. It’s not because the movie wasn’t good — it was — it’s because it hit a little too close to home. Or so I thought, until I got through the first twenty minutes and realized it’s not at all reflective of my experience.

If you found this blog having been recently diagnosed, don’t watch the movie. I would hate for you to think that’s what your life would be like.

If you don’t have a personal connection to ALS, have at it. (Rated R for excessive profanity, gratuitous sex, and glorification of drugs.) It was a well-told story. A woman with a terminal, degenerative disease struggles to have her desires honored.

Nothing humbles a person like needing help on the toilet. Mechanical bidets extend independence. Other tools preserve some modesty.

Nothing humbles a person like needing help on the toilet. Mechanical bidets extend independence. Other tools preserve some modesty.

After Kate’s arms fail and she’s not able to feed or toilet herself, she fights her husband on the selection of a caregiver. She doesn’t want to feel like a patient, and she ends up choosing Bec, a woman who’s a domestic disaster, but sees her for who she is, a person. After Kate’s voice is slurred, and Bec argues with her husband on her behalf, Kate has to remind her, “You’re not me.”

Ultimately, it comes down to her desire to die, and at the end of the movie (spoiler alert) we find she gives power of attorney to Bec because she knows she would honor her wishes.

I get it. I like to feed myself, too. I pull up to the counter and put my face to the plate. At restaurants, I ask for a stack of plates or bring my own 6" x 6" wood blocks.

I get it. I like to feed myself, too. I pull up to the counter and put my face to the plate. At restaurants, I ask for a stack of plates or bring my own 6″ x 6″ wood blocks.

I can relate to much in the film. I want to have a voice in my care. I want to do things for myself, if at all possible. I feel like my care is a burden on those who love me. I don’t have a particular desire to be put on a vent. I am not bothered by her wish to die a natural death at home, rather I’m bothered by the filmmaker’s portrayal of ALS as a hopelessly debilitating disease that sucks all enjoyment out of life. For some, it is, and the movie is about one such person. But she is not me.

ALS progresses differently in everybody, for some so fast they have no time to react. I would never judge others, but I would point out that for many people progression is slow enough and there are many ways to adapt that can bring more satisfaction to life.

This would’ve been especially true for the affluent couple in the film. Most manage this disease on a small Social Security income, but this couple could afford to hire 24-hour care, yet the only adaptive equipment they had was a wheelchair.

Well, if I sat her at my desk, she could write a blog post. In the scene, she has more function than I.

If she sat at my desk, she could write a blog post. In this scene, she has more function than I.

Kate struggles with routine tasks, such as using a computer, brushing her teeth, eating, toileting. I can relate to those frustrations. Things I can do one day are impossible the next. But I adapt. Kristin and I figure out solutions to overcome challenges. In fact, I am more disabled than the character was during much of the film. I have less use of my legs, less use of my hands, yet I adapt.

Many solutions do not require much money, but they go a long way in providing some independence and satisfaction in life.

Don't take medical advice for movies. Google pictures of pALS on vents. They are usually in the wheelchair and sometimes using a computer.

Don’t take medical advice from movies.

To be fair, Kate meets another pALS with a great attitude. But later, her new friend ends up on a ventilator and unable to speak. The film shows her lying on her back in a hospital bed with a tube down her throat and staring at the ceiling. “Just don’t let me end up like that,” Kate slurs in horror.

Even on a ventilator, which generally is put in via a tracheotomy, some pALS speak, and all are at least able to use eye-gaze technology to communicate. One can have a full life even on a ventilator. Now, I have a relationship with Jesus Christ, so I won’t cling too tightly to this earthly life. I may not choose to be ventilated, but it won’t be because there is no satisfaction in life.

Three Thanksgivings

November 23, 2015, by Kristin Neva

IMG_0538-1I try to practice gratitude. I have a long list of things for which I am thankful: Being married to my best friend. The health of our children. A handicap-accessible house. Long-term disability insurance. My parents next door to help us. A supportive church. Safe schools in a small community.

Even as I write this list, I realize the tenuous nature of everything on it. Last week, my kids came home from school and described the lock-down drills they had gone through. Something I didn’t have to do as a kid. Something school administrators didn’t worry about back then. The kids hide behind the teacher’s desk, lights turned out, window shades drawn. The teacher locks and barricades the door and they all sit in silence until the all-clear is given and they find out that yes, it was really a drill.

Life is uncertain, and while we should give thanks for the good in our lives, doing so highlights the flip-side of those blessings. During this season of life, my gratitude list is constantly shifting. Thanksgiving that Todd can walk turned into to gratitude that, after an almost two years, his wheelchair was finally approved by our insurance last week. Thank you, God!

Todd preached a message on Sunday that encouraged me. It wasn’t a message about Absolute Thanksgiving, when we have health, wealth, and prosperity. And it wasn’t even a message about Relative Thanksgiving when we can look at what we have left or compare our situations to how bad things could be. He preached about Obedient Thanksgiving, which is choosing to give thanks even in the midst of lament.

Check it out:

ThxPodcast

Miss Joy

September 29, 2015, by Kristin Neva

IMG_0203Sara jumped off the court and threw the ball into the basket, winning a round of lightning. She turned to me and smiled, and I gave her a thumbs up. She bounded from one side of the court to the other.

The week before, at basketball camp, Sara wasn’t able to make a basket. Her throws fell short of the rim, but I knew she was just as strong as the other girls. She can do cartwheels and flips, and she can cross the monkey bars. I told her, “Today, ask your coach what you need to do to get the ball higher.” I didn’t know how to help her — I was one of those kids picked last during gym class. Before I left for my workout, she was already talking to her coach.

That’s my Sara. She’s confident and coachable. She’s energetic and optimistic, and not much phases her, except for creepy, Halloween displays. Some creature jumped out at her in a Halloween aisle at Menard’s when she was four, and she’s been scarred.

At Snap Fitness, I ran on the elliptical and listened to a podcast with author Elizabeth Gilbert. She talked about fear and the creative process. She talks to it, as if it’s a person, saying something like, “Fear, you’re not all bad. You saved my life many times and kept me from dangerous places and people, but you can back off now. I’m not going to die writing this book.”

Parts of me compete for attention. Joy delights in watching Sara grow into her confident, athletic self. Anger demands to know why God won’t answer our prayers for healing, or at least halt Todd’s decline so we could adjust to life with disability. Sorrow fills me when I think that this life is normal for my children. “Will Daddy always have ALS?” Isaac asked me the other day. He remembers when Todd was able to draw a tractor for him to color. “Me and Sara are getting bigger. Daddy’s getting littler,” Isaac observed a few years ago when I helped Todd get into the van and put on his seatbelt.

It’s the ying and yang of life. You can’t have the love without the grief. The joy without the sadness. Being human encompasses both.

When Todd was first diagnosed I sought out a woman who had lived with her husband’s ALS for ten years. They had a ten-year-old son. I told her, “I’m hoping Todd’s disease progresses as slowly, but I don’t want to spend the next ten years grieving.”

“You learn to compartmentalize it,” she told me.

It’s a good thought but hard to do. I never forget the cloud we live under, even as I have unbridled delight in watching Sara grow into the person she’s becoming. My feelings consume me. One minute happy. One minute sad.

After my workout, I picked up Sara from basketball camp. We headed to the Halloween Superstore to get a blue wig — she wants to be Joy from the movie Inside Out. We ordered a little, yellow dress from Kohl’s. She will make a convincing Joy, not just in appearance, but in her personality. She embodies Joy.

As we neared the store, she froze. She stared at a bloodied, screeching clown. She refused to go in. I asked an employee if I could bring the blue wig out to the hallway to have her try it on. “Sure, there was another girl who wouldn’t come in either.”

The wig fit perfectly, and Sara beamed. “I’m going to be one of the fruit of the Spirit,” she told me.

“Yes you are.”

She got quiet, then asked, “Why isn’t Isaac scared to go in there and I am?”

The prior afternoon, I brought Isaac in there to buy a Police Boy outfit. He loved the experience, and came home to tell Sara about a wrinkled witch that cackled and said, “I’ll have you for dinner.”

“Your fear is okay,” I told her, channeling Elizabeth. “Talk to it. Tell it, ‘Fear, you keep me away from nasty, scary stuff and that’s a good thing. You can go away now.’”

My confident, coachable girl repeated the line, and Fear backed off. Her face relaxed.

I’m going to try the same with Sorrow when it overwhelms me. “Sorrow, you’re helpful because you help me love other people and have compassion for their suffering, but you can’t have all the space, because Joy lives here too.”

 

Don’t Rush It

September 7, 2015, by Todd Neva

IMG_0113“How does it feel to be six?” Kristin asked Isaac last Monday.

“You know, I’m almost seven,” he said.

“Oh no, don’t rush it.”

Kristin’s fellow caregiver gave her young son the same advice after somebody gave the boy a well-intentioned pep talk and told him when his dad passes away he’ll be the man of the house.

“Mom, can I still sleep with a nightlight when I’m the man of the house?” the boy asked, unsure if he’s up for the task.

“Of course, I still sleep with a nightlight,” the mother comforted him, and then she told him he only needed to worry about being a child.

Five years ago when I was first diagnosed with ALS, Sara was four and Isaac was nine months old. The doctor wouldn’t give me a prognosis then, rather he said he’d evaluate me in a few months and from there we should have an idea. The average prognosis is three to five years, but I saw ALS take a family friend in eighteen short months.

In the days after the diagnosis, I purchased journals for each kid and in them wrote letters until I could no longer bear the cramping in my forearm. There was so much to tell them, teach them, about life. I managed to get several of those lessons from my father while he worked on my car or helped me with house projects. A book of letters is a poor substitute, but it would have to do.

I wrote to Isaac, “Now, I am not going to tell you to be the man of the family. Your job is to be a boy first. I will make sure Mom has enough men in her life to take care of those things she needs a man to do. And I will make sure you have men in your life to teach you how to be a man. But do not rush it. Growing up takes time. Just enjoy being a boy, and the growing up will take care of itself. Love, Dad”

I’ve had the privilege of watching six years of my son’s boyhood. He’s everything a boy should be. He loves trucks and Legos. He likes to build and play outside. He’s rough at times, but tender with his mother and generous with the sister. In addition to all that boy stuff, he’s a big help.

He vacuums the floor and cleans the sinks. He does all the normal chores a boy should do. Of course, because I need care, he gets to help in ways other boys don’t. He puts my feet back on my footrests. He gets me a drink if I’m thirsty. He swats flies that bug me. He straps me into our accessible van.

We ask much of our boy, but the one thing we will not ask is for him to be a man.

Be Careful What You’re Thankful For

August 11, 2015, by Kristin Neva

IMG_2779We’ve had a few rough days. As Todd’s health declines, our old method of transferring him works only some of the time—when his feet aren’t too swollen. I had a couple rough nights in a row, getting up in the middle of the night to help Todd get comfortable. I was on edge—monthly hormone fluctuations and sleep deprivation don’t contribute to emotional stability. Both nights, I wasn’t able to fall back asleep, and I lay in bed crying and feeling forsaken. I prayed for comfort that did not come.

I tire of praying. Todd and I continue to pray for his healing every night before bed. I just did the math. We have been at this for over five years. That means we have prayed that God would heal Todd more than 1,825 times.

At night, when I’m tired and want to sleep but need to help my dear husband, I silently count as an alternative to crying or screaming. 1, 2, 3, 4…. I count to distract myself.

Sunday’s sermon on suffering also had me silently counting so I wouldn’t break down in tears. I lost it during the closing hymn, It is Well with my Soul. I headed to the bathroom and cried because it is not well with my soul.

Then, I walked downstairs to get my guitar. Two of my friends saw my tear-stained face. They listened to me talk about the difficult last few days, empathized with me, and prayed for me. I felt better.

I told them about my nighttime counting. One of my friends encouraged me to instead pray, “Thank you for my hands.” I might not feel thankful, but I can choose an attitude of gratitude that I have the strength to care for my beloved. I grudgingly agreed to try it.

That night as I was tiredly putting Todd to bed, I silently prayed gratitude and found that it did improve my mental health. When I woke up with Todd in the middle of the night, I again prayed, “Thank you for my hands.” It was better than counting the seconds until I could go back to sleep.

The next morning, I woke with shooting pain in my right arm. I laughed at the bitter irony. I finally thank God for my hands, then, wake with one unusable. Who am I? Job? Is this a test? Will she curse God and die? What the heck?

Shooting pain in my arm continues to flare up with slight movements like raising my right hand to my ear or using that hand to roll Todd onto the sling. I have a chiropractic appointment and a massage at the end of the week. Until then, I am down to one good arm for certain tasks.

This morning, cuddling up next to Todd, I screamed in pain when I lay on my right shoulder. I managed to get him in the sling and in his wheelchair using mostly my left arm. As I lowered him onto the toilet I said, “I am thankful for our overhead lift. I couldn’t do this one-handed with a Hoyer lift.”

“Be careful what you’re thankful for,” he said.

Everything we have can and will be taken, except for “an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you.” (1 Peter 1:4)

I am an American Christian and have been a part of a culture that consumes practical results-oriented teaching: 6 Steps to a Happy Marriage and 5 Ways to Raise Great Kids Who Love Jesus. I wish I could find 4 Steps to Overcome Grief and Emotional Pain. I pray, read the Bible, exercise, and practice gratitude. Four things. I should be able to overcome my sorrow and write a New York Times bestseller: How to be a Super-Christian in Times of Crisis. I long for a formula.

I’m increasingly aware and afraid that there is only one formula: death.

John 12:24-26:

Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit. He who loves his life loses it, and he who hates his life in this world will keep it to life eternal. If anyone serves Me, he must follow Me; and where I am, there My servant will be also; if anyone serves Me, the Father will honor him.

The message of Christianity is the message of the cross—a message of life through death. Suffering. Sorrow. A death to self, desires, dreams. Servanthood.

But, one day, resurrection.

2 Corinthians 4:16-18:

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison. While we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

God’s Gift of Ignorance

August 5, 2015, by Todd Neva

IMG_20150701_183235I thought my days of eating at The Fitz were over, but I keep finding creative ways to overcome obstacles. In this case, Kristin’s brothers, when they were up visiting from Texas, devised a platform system to get me over a step into the dining room of the 1957 beach-side inn and restaurant.

Kristin helped me into the building through the kitchen, while Steve and Nate set up the platform and ramps. I rolled up onto the plywood-topped pallet, carefully pivoted on the three-and-half-foot square deck, then drove into the dining room. It was worth the hassle for the best ribs in the Midwest.

I made it into Fitzgerald’s one more time, but I knew it may be my last. The pallet’s too heavy for Kristin to handle on her own. I took in the 180° view of Lake Superior with the sliver of Isle Royale 45 miles away on the horizon.

I savored every rib I could stuff into my stomach, which has shrunk — at least on the inside — to suit my reduced caloric requirements of being nearly motionless. The ribs I couldn’t eat I brought home for our almost-six-year-old Isaac. He was quite disappointed that he didn’t get to go.

A month later for Kristin’s birthday, we had yet another chance to go with the help of her parents. Lani helped me through the kitchen while Dave and Kristin set up the platform and ramps. Again, it was worth the hassle, and Isaac loved his bacon-wrapped filet mignon.

“When I grow up, we can take dad to The Fitz and won’t need anybody’s help,” Isaac said after dinner.

I delighted in his hope for the future, even though I knew how improbable it would be for me to eat at The Fitz when Isaac’s an adult. I’ll be eating from a feeding tube, if I’m even alive.

Isaac’s always thinking about me in his Lego designs and plans for the future. He builds Lego airplanes with accessible ramps. He plans to build a house with a basement, but with an elevator “so dad can visit.”

We’re honest with him and Sara about my health and what will happen to me. We talk of other pALS who’ve died, some shortly after diagnosis. They also know that some pALS live a long time, and that we don’t need to worry until breathing gets difficult.

In Heavy, Kristin writes:

In the first session, I described my overwhelming fear. The counselor explained worry affects us physically: “God hasn’t designed us to worry about the future, but to live in God’s grace for today.” … We aren’t designed to know the future, to have a probable life expectancy. In our case, modern medicine’s given us that. This disease isn’t like many others. With many other diseases, we’d have hope, at least in the beginning, that perhaps we could beat it. With ALS, there’s no treatment and no cure. We know how this is going to end. A hundred years ago, we wouldn’t have had this prognosis. Todd would have weak arms, but his probable future wouldn’t be mapped out. But we know his future, so we do need to plan as best we can—just not obsess about it.

I’d go a step further beyond saying we’re not designed to know the future. I’d say ignorance is a gift. God gave a gift of innocence to Adam and Eve, but they chose to disobey him and eat from the Tree of Knowledge of Good and Evil.

I don’t want to know too much. People asked if I’ve read Tuesdays with Morrie. No. I’m living it, so I don’t want to read it. Some find comfort in our book, Heavy, and I’m glad, but others like me prefer not to even think about it.

I’m focused on today. I’m five years into a disease that cuts most down quicker than they can adapt. I cherish every day and what I can do, such as help Kristin edit her second novel.

Yesterday, after our usual method of transferring me to the toilet failed, Kristin stuck out her chin and squeezed her eyes to hold back tears.

“What’s wrong, Buttercup, the edits weren’t too bad.”

She laughed her sorrow out.

I couldn’t imagine what else she could’ve been upset about. I’m already living on borrowed time, and we had an opportunity yesterday to find another creative way to overcome an obstacle.