The Art of Choosing a Family-Friendly Movie

November 4, 2019, by Kristin Neva

Friday movie night has become our favorite pastime, as it’s something we can still enjoy as a family despite my husband Todd’s paralysis. We typically find a funny movie on Netflix or Amazon Prime. Our children, Sara and Isaac, pull up chairs around Todd’s computer. We laugh together. Todd predicts the scenes. Our goldendoodle, Comet, lies in front of Sara, and she pets him for an hour and a half.

A couple weekends ago, I found something to see in the theater: “The Art of Racing in the Rain,” based on a book by the same name. In the film, a philosophizing dog dreams of becoming a race car driver. The trailer made the movie look fun.

Enzo, a golden retriever voiced by Kevin Costner, reminded me of Comet. Todd frequently provides a voice for Comet. Speaking gently, he says, “Sara, I want a hug.” Or, “Isaac, can you get me food and water? I would get it myself, but I don’t have thumbs.”

Comet hugging Sara

I skimmed an online review to make sure “The Art of Racing in the Rain” was family-friendly, but didn’t read it in detail.

We went to the theater for a last hurrah before the kids went back to school and fall activities started.

We got popcorn and settled into our seats at the back of the theater, with Todd parked in a cutout for wheelchairs. Todd tilted back, and I turned off his chair so the display for his head array wouldn’t shine in his face.

With Todd’s compromised health, I like to keep multiple hands out of the communal bucket of popcorn, so I pulled plastic cups out of my bag, filled them, and handed them to the kids. I filled a Dixie cup and held it to Todd’s mouth. He plucked kernels from the cup with his tongue.

The movie got off to a promising start. An old dog reflects on his life: His first memories with his littermates. Being selected by his master, Denny. Learning about racing and appreciating Denny’s ability to win when the conditions turn bad.

Denny doesn’t fear the rain; rather, he expects the car to lose traction, and he initiates a controlled slide going into a corner. He is the greatest race car driver, in Enzo’s mind.

Enzo gets jealous when Denny meets Eve, but he learns to appreciate her. Enzo is the ring bearer at their wedding, and he’s in awe when he finds Eve is carrying a life inside her. He hopes the child will look like him. But alas, Eve has a human child — Zoe.

I’m a sucker for a good love story. The movie flashes through scenes in their life until Zoe is about 7 years old. But then I realized I had missed a major plot point.

Eve begins taking pain relievers, and Enzo smells decay on her breath, like rotting wood. It turns into a story about cancer.

Enzo knows it, but he’s helpless to tell the other characters. They’re oblivious to the significance of Eve’s symptoms: headaches, nausea, and forgetfulness.

I looked over at my kids, wondering if they’d figured out where the story was heading. I glanced over to Todd. “I didn’t see that coming,” he whispered.

Ugh. Whoops. We would have skipped this one if I had read the review more carefully.

It’s the type of story I would read on my own. I’m drawn to books that explore themes of grief and loss. I just finished “Being Mortal,” by Dr. Atul Gawande. He tells stories about his patients and his own father, shedding light on complex issues surrounding illness, aging, and death. “Being Mortal” made me feel like my family isn’t alone in dealing with a terminal disease. We’re all human, and we all die.

However, I avoid such tender topics when I watch television shows or movies with the kids, preferring to let them be as carefree as possible. We’re dealing with enough in real life.

In “The Art of Racing in the Rain,” Eve takes Enzo for a walk and collapses on the trail. Enzo barks, bringing help to her, but then she’s diagnosed with an inoperable brain tumor.

Tears welled up in my eyes, and I anxiously glanced at the kids to see if they were handling it OK. They seemed fine.

I won’t give away the ending, but suffice it to say that Denny risks losing control, and he has to decide whether he’s going to freeze up in fear or drive hard through the rain.

“It wasn’t exactly an escape from the weightiness of our situation, but maybe it was good that the kids saw it,” I thought on the drive home, as we discussed the highlights and concluded that Enzo might be a deeper thinker than Comet.

Maybe the kids can absorb strength from fictional characters who are facing adversity and not feel alone.

***

This article originally appeared in ALS News Today: The Art of Choosing a Family-friendly Movie.

Just Breathe: Dealing with Chronic Stress

October 28, 2019, by Kristin Neva

ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below his sternum.

On Sunday morning, Todd needed several assisted coughs as we were getting ready for church. On the 10-minute drive there, my stress level rose as he struggled to breathe in the back of the van. I asked if I should stop. He shook his head no.

When we arrived, I told my daughter to grab my guitar and head upstairs. Sara and I were scheduled to lead preschool music.

Todd backed out of our accessible van, and a friend asked, “How are you doing?”

“I’ll be better when I can breathe,” he said through the gurgling in his lungs.

In the parking lot, Todd reclined his chair. The church shuttle bus pulled into the lot and stopped short of Todd. A stream of people got off the bus as I gave Todd several more assisted coughs.

Todd inclined his chair, and I told our son, Isaac, to come and get me if his dad needed help coughing.

Todd and Isaac wheeled into the sanctuary, and I joined Sara upstairs.

One minute I was acutely aware of the precarious nature of Todd’s health. The next, I focused on capturing the attention of rambunctious preschoolers between the two services.

I played guitar and Sara led motions. I delighted in the children singing and dancing. They were eager to wave scarves, shake shakers, and take a turn drumming on the cajon. A 4-year-old girl wanted to help, and she boldly took a place between me and Sara. This made me smile. Singing with the kids is a joyful break from stress.

After music time, I joined Todd and Isaac in the sanctuary. While I was upstairs, Todd had needed another assisted cough, and a paramedic friend helped him. Todd’s lungs filled up again during the sermon, so he wheeled into the lobby to get help.

He had an occasional weak cough throughout the rest of the service. I anxiously looked his way.

“I’m fine,” he whispered.

After the service, he said, “I think my lungs finally cleared out.”

“This is why people use the cough assist machine every day,” I said.

“Maybe I should,” he halfheartedly agreed. He doesn’t like how the device fills his stomach with air and makes him feel like he’s going to throw up. “Maybe it would be better now that I have the PEG tube. You could open the valve and relieve the pressure in my stomach,” he said.

I was able to relax on the drive home, but then I realized I had a headache. It was not surprising, considering the adrenaline that had been pulsing through my body.

We ate lunch, and I set him up on his computer. I hoped he would find time to edit the audiobook we recorded. Even though it was a cool fall day, we kept the windows closed and turned on the air conditioner in his office as it seems to improve his breathing.

It feels surreal to be living on the edge of life and death when breathing is compromised. It’s an absurd normal for me, and I must find ways to release the chronic stress. I exercise while I listen to podcasts or audiobooks, I journal, and I find outlets to be creative.

Todd’s lungs were clear, so I drove to the gym.

I jumped on the elliptical and listened to a chapter of my audiobook. As I pedaled, I felt the tension melt away in my mind and body. When I was done, I wiped down the machine and got myself a cup of tea. I drove home feeling calm and sane.

***

This article originally appeared in ALS News Today: Just Breathe: Dealing with Chronic Stress.

No Guarantees, but We Have Choices

October 21, 2019, by Kristin Neva

“What? But there’s a guarantee on your website,” I told the customer service representative for the herbal company. I had requested a refund of a digestive supplement because it didn’t work for me.

He repeated his scripted line: “That product is nonreturnable because it’s consumable.”

“Wow!” I couldn’t believe my ears. I appealed to his reason and asked him to look at his company’s website.

It was impressive, and so were the testimonials, but what sold me was the “180-day money-back guarantee.” I checked the FAQ page to see if there were any strings attached. “If it doesn’t work for you, call customer service and get your money refunded, no questions asked.”

“It doesn’t matter what the website says,” the rep told me.

I asked to talk to his supervisor. He put me on hold, but the supervisor didn’t pick up.

I was upset. I had been sold a lie. I was the victim of false advertising, a guarantee that the company wouldn’t back up.

It wasn’t the first time that I had been disappointed in a guarantee.

Ten years ago, my husband, Todd, and I were in good health. Todd had a decent job, and we lived in a beautiful bungalow with our two young children. We were living the American dream.

I didn’t know it at the time, but I had unwittingly bought into the prosperity gospel. We weren’t perfect, but we were trying to do good in the world. We loved each other, our kids, and our neighbors. God was blessing our lives.

Then Todd was diagnosed with ALS at just 39 years old. He was told that he’d likely live only another two to five more years. There was no cure or treatment.

I was so disappointed in God.

I found a blog by a young youth pastor I had worked with in Chicago. He lost his wife to cancer. Like us, they had two small children. I read through tears about their journey and her eventual death.

“It’s so unfair,” I told Todd. “They were following God. Good marriage. Happy family.”

“So, you think it would be fairer if only drug dealers got sick?”

Yup. If only there were a correlation. If you break the law, you get ALS. Cheat on your spouse, get cancer.

It seems like that’s how life should work. You reap what you sow. Do what’s right, and blessings will come your way.

But that’s not how life works. God doesn’t guarantee wealth and health, but it’s so easy to fall into those belief patterns because it’s almost become part of the human psyche, a promise of the American dream.

Work hard, and you’ll succeed. Take care of your body, and you’ll be healthy.

Everybody at some level buys into a philosophy of self-determination. Life does work when we make good choices — until it doesn’t.

And then disappointment sets in. We are stuck in that gap between expectation and reality — the higher the expectation, the greater the disappointment.

Life happens, and the American dream turns into a nightmare. When tragedy strikes, life becomes too complicated for easy answers and banal sayings. We may find ourselves in a crisis of meaning. Some people want to give up, and that sense of nihilism can extend to others. Some people get mean. Couples divorce.

Where do we go from here?

We must fight and refuse to give up. We keep trying and doing what’s right. But we adjust our guiding philosophy to something more realistic than cheap slogans and worthless guarantees. We find something true that still demands our agency.

Here it is: Life is hard. It’s unfair. But we can make it better than it could be by the choices we make.

Try to improve your situation. Practice gratitude. Sacrifice yourself for others.

Find purpose and meaning by living with love for the sake of our fellow humans and our own hearts.

We know that we can make it better than it could be because we see the results when people make the wrong choices.

People can make choices. That’s my message of hope. Todd and I choose to be kind to each other and our kids. We have agency, even in the dire war zone of ALS.

By the way, I did get my refund, thanks to the power of social media and a comment I made on the company’s Facebook page. The company was apologetic and promised it would never happen again. If only I had that much influence with God as I pray for Todd’s healing.

***

This article originally appeared in ALS News Today: We Have No Guarantees with ALS, but We Do Have Choices.

Learning New Skills I Wish I Didn’t Need

September 9, 2019, by Kristin Neva

[This article was written for ALS News Today prior to Todd’s surgery to insert a PEG tube on August 12, 2019. Keep reading after the article for a follow-up by Todd.]

I love learning some new skills, but not all of them.

Thirteen years ago, I took a creative writing class that set me off on a journey that has included three novels, a children’s book, and now a weekly column. This week, I hope to take a puppet class.

I’m also learning how to manage a feeding tube this week. It’s a skill I wish I didn’t need.

One of the hardest things about caring for someone with ALS is adapting to continual change. After we adjust to a new normal, my husband, Todd, has another setback and we need to figure out how to manage the next stage of the disease.

A few months after his diagnosis nine years ago, Todd enlisted me to shave his face. I still remember my apprehension as I picked up his razor and ran it over his cheeks, hoping I wouldn’t nick him. He didn’t ask me again. Then he grew his first beard. He ended up liking it, and it was easier for both of us.

Today, shaving him would be no big deal, but I was still reeling from the diagnosis at the time and it was overwhelming.

Since then, I’ve taken on more tasks, learning new skills as Todd loses independence.

I’ve learned how to squeeze just the right amount of ketchup and mustard onto Todd’s hamburger.

I’ve learned how to pour water into his mouth at just the right pace so he can swallow pills.

I’ve learned to use the Hoyer lift to get him off the ground when he falls. (Remember to crisscross the leg straps so he doesn’t fall out.)

After we got his wheelchair and an accessible van, I learned how to secure him with Q’Straints.

After his arms became too weak to use the joystick, I learned how to drive his wheelchair while walking beside him. I figured out how to maneuver through doorways by reaching over his shoulder or walking backward in front of the chair.

As if all that wasn’t stressful enough, I had to learn to assist him in coughing. He told his physical therapist that he couldn’t quite clear his lungs, so she showed me where to press below his sternum.

“OK, I’ll try it. Tell me if I’m doing it right,” I said. Todd stacked his breath as I counted, “One, two, three.” Then I pressed as he exhaled.

After I got used to each task, they didn’t seem like a big deal. I remind myself of this because the future feels daunting.

This week feels daunting, as it’s time for him to get a feeding tube. I’ll need to learn how to flush it and, eventually, feed him through it.

Others who care for people with ALS tell me it isn’t hard to use the feeding tube. Todd’s shower aid has worked with many clients who’ve had them, and she says it’s easy.

After this surgical procedure, will I still be able to give him an assisted cough without hurting him? The surgeon thinks so.

Will it be painful for him to be transferred? Turned in bed?

I’m sure I’ll figure it out, but for now, it’s a big unknown. I’ve watched a few YouTube videos, but I won’t feel comfortable until I’ve had hands-on experience.

If all goes well with Todd’s surgery and recovery, I’ll go to the puppet class. Oh, how I wish that was the only new skill I’ll be learning this week.

***

This article originally appeared in ALS News Today: Learning New Skills I Wish I Didn’t Need.

***

My PEG Tube Experience
September 9, 2019, by Todd Neva

My PEG tube surgery went well. We were at the hospital for three hours, but the actual procedure was only ten minutes, and the surgeon said it went flawlessly.

The anesthesiologist kept me breathing on my own during the procedure, increasing the chance that my lungs would continue to function after the surgery. The precaution was to use only a “twilight” dose of propofol, which meant that he needed to first de-sensitize my gag reflexes. That was a fairly dreadful process, but I’ve had worst gagging episodes at dentist appointments.

It took a week for me to recover, during which time I managed the pain with Tylenol and back sleeping. I can now be turned to sleep on my side — the caregiver just needs to make sure my hand doesn’t snag the tube. It doesn’t bother me otherwise, and there’s no pain. And we’ve been able to do assisted coughs with no issue.

We weren’t sent home with instructions, so it was confusing at first, but we figured out how to manage the feeding tube. It is not difficult.

We’re not using it for nutrition yet, so Kristin just cleans around the stoma, replaces the gauze, and flushes the tube out daily.

It’s been helpful to have the PEG tube. We can use it to relieve gas that I would otherwise have difficulty burping up. My nighttime caregivers can give me water if I’m thirsty, because it’s too difficult to get more than a sip from a straw when I’m lying on my back or side. We’ve used it to inject NyQuil after I was already in bed, and we used it to inject baking soda and water when I had indigestion.

My neurologist suggested I get the tube two years ago, but that seemed premature. The cost of waiting was that we needed to monitor my breathing more frequently. My forced vital capacity had finally declined to the point where now was the right time to have the surgery. All went well, so in retrospect I’m glad we waited.

However, we’ve heard stories of people waiting too long, and then the surgeon refused to do the surgery, or they did the surgery but recovery was too difficult. If my breathing had been declining anymore rapidly, I would not have waited — especially knowing how easy it is to have one.

My biggest irritation, honestly, is that my stomach’s a little itchy underneath the medical tape.

Begging a Master to Send Help

August 26, 2019, by Todd Neva

Anybody who has visited me knows Comet, and they know Comet wants to show his rug and be petted.

Comet likes to hug Sara. He sits and lifts a front leg, and Sara knows that means she should kneel in front of him. He puts both paws on her shoulders.

When Kristin cooks food, he sits pretty, but patiently, hoping he’ll get some food. Maybe a fish skin. Trimmings from a ribeye steak.

Comet doesn’t expect anything from me. He knows I can’t pet him, and I can’t give him table scraps.

He’s my buddy, nonetheless. He hangs out with me in my office.

When he’s bored, he goes to the window and stares outside, and then he looks over to me expectantly.

He knows I can’t let him out, but he knows I have the power to call people to his aid.

“Isaac,” I call to the other end of the house, “come let Comet out.”

Comet then waits by the door for Isaac to come.

It’s how I feel about prayer. For years, I prayed for God to heal me, but now I mostly pray for help. And many people have come to our aid.

Oddly Normal Déjà Vu

August 20, 2019, by Kristin Neva

Life with ALS is absurd when I think about it. It’s so different than it was before the disease, and with each setback, life gets even stranger.

We tried to maintain a normal life, but nothing seems normal about feeding one’s husband in a restaurant. Just a year ago, Todd preferred to eat as independently as he could, so we would ask the waiter to bring a stack of plates to put under his dish. I’d cut up his food and push it to the edge, and he would bend down and eat face-to-plate.

Before we had an accessible van, Todd was too heavy for me to get him out of his wheelchair and into the passenger seat by myself. I’d look for a familiar face in the crowd leaving an event or restaurant, but more often than not, I’d have to approach a brawny stranger.

“Excuse me. My husband is disabled, and I need help pulling him out of his chair so he can transfer to our van. Would you be able to help us?”

No one ever turned me down, and I cherished the helpfulness of people in our small town, but it felt strange.

Now, choking is an increasingly more frequent part of our bizarre world.

At a restaurant the other day, I could see panic in Todd’s eyes. He clearly wasn’t able to swallow his food, so I reclined him and repeatedly pressed on his abdomen until whatever was lodged in this throat came out.

Others looked on in horror, but for us, it’s the new normal.

It’s getting harder and harder to remember the life we once lived.

I do recall Todd saying to our toddlers, “You can pick your friends, you can pick your nose, but you can’t pick your friend’s nose.”

Now, my best friend can’t pick his nose. Yup, that’s on me, along with toileting and all other personal care tasks.

This is definitely not the life we had imagined we would live.

I had also never imagined we’d become hockey fans. Neither Todd nor I followed any sports. We both preferred to be the ones doing the physical activity, such as hiking or biking. Now, we cheer on the Michigan Tech Huskies. It’s something we can still do together as a family.

From the accessible seating right up against the glass, I looked around the crowded arena one evening and I was struck with a realization. Most of these people are able-bodied. They could be out doing something physical, and yet they choose to be here.

It felt oddly normal. I even found myself enjoying the game, vicariously competing through this team — my team. Who knew watching sports could be so much fun?

Hockey games are easy. It can be much more work to be normal.

We wanted to give our kids a spring break vacation seven hours away in the Twin Cities. We found a truly accessible hotel that could accommodate a lift under the bed and in the bathroom. We had to arrange for a Hoyer lift to be delivered to the hotel, and a nighttime caregiver traveled with us. The van ride was hard on Todd, and we both dreaded being away from our overhead lift, but the next day we made it to the Science Museum of Minnesota.

We went to the museum’s Omnitheater. Because Todd was in his chair, they let us into the theater before others were allowed in, and our whole family sat together.

When checking out the exhibits, our son Isaac went off in one direction with Todd, while I let our daughter Sara choose exhibits that were of interest to her. In that moment, I had this lovely feeling: We were enjoying an activity together like we would have done in a life without ALS. It was like déjà vu. For a moment, life seemed really normal.

***

This article originally appeared in ALS News Today: Normal Déjà Vu: Life As We Used to Know It.

My Most Personal Novel

August 11, 2019, by Kristin Neva

Across the Bridge on Amazon for Kindle

Across the Bridge is on sale for 99 cents on Kindle! I was thrilled to see it reach #2 in Contemporary Christian Romance books yesterday on Amazon. If you haven’t read it, now’s the perfect time to buy — or forward this to a friend.

Across the Bridge felt the most personal of the three novels I’ve written. As I’ve watched Todd’s body slowly decline these past nine years, I’ve struggled with God and the suffering in the world.

I heard some advice on writing — “Tell a story about what you don’t understand.” When story is an exploration, there’s authenticity in the writing. Life is hard, so how do we persevere? How do we make peace with questions that can’t be answered?

I wrestle alongside my character Marcella Seppa as she struggles and grows. She’s hesitant to get close to widower Drew Smith, afraid of hurting his son AJ in the same way she was hurt when her father remarried within a year of her mother dying.

Across the Bridge is the only novel that made me cry while writing it, as if I was watching movie scenes unfold in my mind as I explored themes of love, loss, faith, doubt, and also beauty and joy.

I hope that as you read Across the Bridge you’ll feel the richness I felt writing it.

Embracing the Joyful Sadness of Life

July 31, 2019, by Kristin Neva

This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the sour and sweet. I added a note to the gift basket that read, “Where it all began.”

While Todd and I were dating, we would drive north from Milwaukee to the historic town of Cedarburg, situated on the banks of Cedar Creek. We’d poke around in gift shops, watch a blacksmith practice the ancient craft, pick up caramel apples, and walk along the river. Cedarburg was, and remains, a special place for us. Over the years, we’ve gone back for apples while passing through town, and now that we’ve moved away, we order them on special occasions.

Living with a loved one’s terminal diagnosis is a heartbreaking, sour part of life. Experiencing such intense sadness has opened my eyes to the suffering of the world — abject poverty, violence, disease, and illness pervading the cosmos. I find being human is increasingly difficult. Yet, at the same time, I am more aware of the beauty that co-exists with suffering; the sweetness of life. The sun rises and sets in a glorious wash of color. Deer prance and jump through fields of daisies. Flowers bloom. Birds chirp. Children giggle.

I see this contrast play out in our own lives. With each birthday we celebrate, each family photo we take, there is always the nagging thought: “I wonder if this is the last.” The last birthday; the last photo. The sadness of that thought is juxtaposed with joy. “We’ve made it this far! One more memory in the bank!”

This spring, I celebrated my son’s first hit at a Little League baseball game, aware that Todd was missing the moment because the weather was too cold for him. When we returned from the game, however, Todd asked Isaac for all the details of his first hit. Similarly, I took a video of my daughter’s marching band at our Bridge Fest parade so I could show Todd, who was comfortable at home in his office. Later, Todd watched the videos with Sara by his side.

Even with sadness, there is joy. We are watching our children grow into themselves. They do well in school. They’ve matured and gained confidence. They are helpful and compassionate. We lean into what we have left.

We recently discovered that McLain State Park installed a walkway down to the edge of Lake Superior. Last week, during a particularly warm evening, I held Todd’s hand as the kids explored the shoreline while the sky turned a brilliant pink. That moment wasn’t dampened by his ALS. Rather, it was made sweeter.

That is the paradox of joyful sadness. The suffering makes me appreciate the simple joys so much more.

***

This article originally appeared in ALS News Today: Embracing the Joyful Sadness of Life.

Fighting Is Winning

July 16, 2019, by Kristin Neva

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help.

“I want to fight this disease,” I told my counselor.

“If you’re fighting, then how do you define winning?” he asked.

I pondered the question before replying. “Fighting is winning. We win if we don’t give up.”

I wanted to at least try supplements, juicing, and nightly massage — things that wouldn’t cause harm or break the bank.

Todd was on board.

We purchased a massage table, and I worked on his spastic arms and legs every night, which helped his weak muscles function better. He walked less stiffly and had more use of his hands.

Since his bloodwork showed he had low levels of magnesium and calcium, he wanted to get off his proton pump inhibitor, which he had taken for a decade to control heartburn.

To alleviate his heartburn, he went on an elimination diet and found he was sensitive to gluten. By avoiding wheat, he was able to rid himself of the chronic condition that had plagued him his entire life.

He took loads of supplements, vitamins, and minerals that, according to limited anecdotal reports, had helped others with ALS. Trying something, even if there was no scientific proof it helps, felt better than doing nothing.

It was hard to say if the supplements helped, but they were relatively inexpensive and his neurologist thought they wouldn’t hurt. He even recommended a few.

Todd did feel better with what we were doing. He felt less fatigued, and his muscles cramped less. He said he planned to die in the best health possible.

Even with all we did, the disease progressed. Now nine years later, Todd is paralyzed with no use of his arms or legs. He can still speak and swallow, but his breathing is getting dangerously weak, and he will soon need a feeding tube. But I look back on those monies spent on all the supplements without regret.

He needed to try something for our mental health.

We have come to accept the natural course of this disease. Todd has since stopped taking several supplements, as it’s getting more difficult for him to swallow big pills, and some of them didn’t seem to make any difference. He still avoids wheat — though he can now cheat on occasion without consequence — and massage helps him sleep at night.

I’m still a fixer, but in recent years I’ve channeled my fighting energy into managing the disease and making him more comfortable.

I try to stay one step ahead of the equipment he will need at the next stage of the disease. We plan to see a pulmonologist this summer after his next breathing test, and we’ll ask if a BiPAP might help him sleep better at night.

My most recent find, which I’m quite excited about, is an adjustable bed frame that’s compatible with Todd’s Amazon Echo smart speaker. He can ask Alexa to tell his bed to raise the head, raise the feet, or turn on the massage.

Todd is now getting longer stretches of sleep — up to 2 1/2 hours. This doesn’t solve all our nighttime issues, as Todd is still a side sleeper and needs someone to turn him and scratch those incessant itches, but it does give him a bit of independence.

We may not have cured the disease, but we keep fighting to manage this beast, so we are indeed winning!

***

This article originally appeared in ALS News Today: Faced with Incurable Disease, Fighting Is Winning.

Prepare, Not Protect

Todd and Sara, October 2010

July 9, 2019, by Kristin Neva

My world changed forever 13 years ago when I became a mom. I lay in the hospital bed with my newborn daughter’s crib next to me and my husband sitting nearby. I was in so much pain I felt like I couldn’t move.

“Sara’s turning blue!” Todd said, panicked.

My pain ceased to exist. I leaped out of bed, pulled the call cord in the bathroom, ran into the hall, and yelled, “Baby’s choking!”

A nurse came quickly, but by that time Sara was already fine. Todd’s lifeguard training had kicked in, and he had turned her facedown and patted her back to help her get the mucus out.

With my heart still racing, I held my little girl, acutely aware that my precious child was vulnerable. It was my duty to protect her from the world.

Every night I prayed, “God, thank you for Sara. Keep her safe and healthy, and help her to keep breathing.” I worried about sudden infant death syndrome. I charted her poops. I researched vaccines, nipple confusion, and BPA. Sara grew, and I managed our lives.

On a family vacation to Disney World when Sara was 3 and I was pregnant with my son, Isaac, Sara picked out a small, stuffed dog to bring home as a souvenir. Lady was Sara’s new best friend. Sara took her everywhere and slept with her.

One night, we couldn’t find Lady at bedtime. Sara was in tears. After a week of searching the house and looking into my heartbroken little girl’s eyes, I decided to buy a replacement Lady.

It was not so easy. The Disney Store said Lady was available only in the theme park. Eventually, I found a seller on eBay who made occasional trips to the park to purchase toys and then resold them for twice the price to distressed parents like me. A new Lady arrived, and all was right with the world.

But a year later, Todd was diagnosed with ALS, and our world changed forever — again.

I felt blindsided, struggling to process the diagnosis. This was a problem I could not solve.

My mind raced. What was our future going to be? Anxiety filled me. How was I going to raise the kids by myself? How would I support them with my liberal arts degree?

For the sake of my family, I was desperate to get a grip, so I found a counselor. “I want my children to feel like they are in a secure world,” I told him. “I want to protect them from pain.”

“You can’t protect them from pain,” he said, “but you can prepare them to go through it.”

We all need to prepare our children to face life’s inevitable challenges. Children who have a parent with ALS will have that struggle to deal with. Other kids will face different problems.

One evening during the year after Todd’s diagnosis, our family, along with my mother, went out to eat at Red Robin, which is much loved because they offer the kids free balloons.

Later at home, the kids were playing, and we heard a loud pop! followed by silence, and then “Whaaa!” Sara’s balloon had hit a hallway light. She was heartbroken.

My mother tried to distract her, but Todd said, “That’s OK. She needs to grieve.”

Supermom me would have promised that we’d get a balloon at the dollar store in the morning, but I let Todd take this one, instead.

“Come here, sweetheart.” Todd grabbed her hand and led her to the living room. Sara crawled up onto his lap. He held her, and she cried. He whispered, “It’s OK. It’s OK.”

Before Todd’s diagnosis, I tried my best to shield my children from pain and hurt. Post-diagnosis, I sometimes let them be sad so they can develop grieving skills.

If our child is being bullied or if we need to mediate sibling conflict, we should obviously step in and act, but at other times, we can recognize that our role is to support and comfort through the pain rather than try to erase it.

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This article originally appeared in ALS News Today: Sometimes in Parenting, We Decide to Prepare, Not Protect.