Monthly Archives: October 2013

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.