A Milestone for Amy

A week ago today, my sister Amy achieved a milestone that she had been anticipating for nearly a year: completing an 11-day road trip to Indiana for a family reunion. Amy suffered a massive stroke in March of 2016, and she is nearly paralyzed on her left side. She initially received top-notch rehabilitation that restored much of her function. She learned to walk with a cane, feed herself, speak clearly, and do basically anything else that you can do with one hand. But when her insurance company decided that she was finished with rehab, her recovery hit a plateau. She's been living with our parents for the last year and a half, and the only therapy she receives is stretching exercises with Mom, who can be a tough taskmaster.

A couple of months ago, she underwent an experimental stem cell treatment using cells from her own body. (Our former brother-in-law, James, provided this treatment at no cost.) Since then, Amy has increased flexibility in her hip and is now able to extend her curled fingers by bending her wrist with her other hand. Her concentration is also improving, and she now reads murder mysteries and even dreams about math.

Our brother Rick strives to push Amy past her limits. He takes her out frequently and brings her home for dinner, and he always insists that she walk rather than use her wheelchair. His front and back porches have a small step, and she has become proficient in navigating those obstacles.

But this Indiana trip challenged Amy on a whole new level. We started with approximately 16 hours of driving over the course of two days. Traveling in a caravan of 12 with passengers ranging in age from 3 to 87, we made a lot of stops. It was a far cry from Dad's idea of a road trip: waking a couple of hours before dark and driving straight through, with everyone holding their pee until we had to stop and fill up or get fast food. No, this time we stopped every hour to hour and a half, and each stop took 15-30 minutes. At every stop, Amy laboriously pulled herself to her feet and walked across parking lots and through truck stops, up hills and down rest-stop sidewalks. This helped ease the pain from her stiff muscles, but all that walking wore her out and made her back hurt because of the way her limp shoulder hangs down.


Step by painstaking step, she set her cane forward, stepped out with her good foot, and then swung her other foot forward using her hip muscles. Whenever she encountered steps, she reminded herself of her physical therapist's instructions: "Down with the bad, up with the good."

The trip was quite grueling for me as well. On past road trips I'd been only the relief driver; this time I drove the whole 1100 miles by myself. Crammed into my car, along with our luggage and Amy's wheelchair, were Amy, Allyson, and her friend Kambry. Mom and Dad rode with my sister Melody and her husband Joe. The last car in the caravan held Melody's daughter Erin, her partner Chad, Austen (age 12), and Kyle (age 3).

The girls slept and listened to music on their headphones most of the way, and Amy was her usual quiet self. (That's one thing that changed after her stroke.) I was thankful I'd learned to like coffee last month on our camping trip. I was also thankful for two really great audio books: To Kill a Mockingbird, and The Help.

When we arrived in Wakarusa at 10 p.m., I hugged my cousin and her husband and said cheerfully, "Girls, meet Jolinda and Jamie. Have a good time!" Amy and I then traveled on to our Aunt Carol's apartment in Goshen.

What Amy feared most was taking showers on the trip. Before she moved in, Dad and Mom had remodeled their shower so that she could roll her wheelchair right in. She and Mom have since perfected their routine, which is both efficient and secure.

I, on the other hand, had never helped a disabled person take a shower. Aunt Carol's shower was handicap-accessible with two hand rails, but Amy had to climb over the low base, perhaps six inches high. Here was our rather intricate process:

1. Amy sat in her wheelchair.
2. Together, we removed her shoes but left on her socks and the plastic splint that holds her foot straight so that she can walk. We pulled her pants down to her ankles.
3. Amy sat down in the wheelchair and I tugged off her pants and her top. 
4. Together, we put her shoes back on and tied the strings. 
5. Amy stood up and, using her cane, carefully stepped over the shower base, took two steps across the slightly slick fiberglass floor, pivoted, and lowered herself onto a very small corner seat. 
6. I laid a towel, preferably dirty, on the floor to catch any errant bursts of water.
7. Together, we removed her socks, shoes, and splint. Sometimes I remembered to place them out of the reach of the collateral water spray, and other times Amy had to wear soggy shoes. 
8. I tested the water temperature to avoid freezing her or scalding her. (She's had some bad experiences with that in the past.) 
9. She huddled on the seat, back pressed against the shower wall, while I leaned through the cracked shower door and tried to direct the spray away from the opening. I let the water run down her back while she washed her front. She rinsed herself.
10. I washed and rinsed her right arm and her back. 
11. She washed her hair, and I helped her make sure she got it all rinsed. Her brain often forgets about her left side. 
12. We worked together to get her as dry as possible while she was still seated. I moved the spare towel into the shower and dried the floor as thoroughly as possible.
13. Together, we wrestled her socks onto her damp feet and put on the splint and her shoes. 
14. Amy cautiously stepped across the shower and over the threshold. 
15. Together, we dried the back of her legs. 
16. I laid the towel on the seat of the wheelchair, and she lowered herself onto it. 
17. Together, we removed her shoes, leaving the splint in place. 
18. Together, we pulled on her top.
19. I pulled her pants over her feet.
20. She stood up, and I pulled up her pants. 
21. She sat back down.
22. Together, we put her shoes back on.
23. I did my best to clean up our mess.

The first time we did this, I somehow managed to dirty three bath towels, a washcloth, and a hand towel. I was a little sheepish about this, but Aunt Carol was gracious about all the laundry. 

The second time, I was surprised to find that Amy was still quite fearful of falling, but over the course of the trip we both grew more comfortable with the task. Somehow, despite her occasional lapses in memory, Amy managed to remember all of the necessary steps. Sometimes she would wait silently in her stockinged feet until I remembered that she has to have her shoes on to safely walk. 

When I told Allyson about the experience, she wrinkled her brow and hesitantly asked, "So, were you naked, Mama?"

"Oh, no!" I exclaimed, shaking my head to ward off the mental images that tried to invade my mind. "That would be really awkward," I said with a laugh.

She looked confused. "Well, did you wear your bathing suit, then?" 

"No, I just stood outside the shower and held the door open a little bit. Aunt Amy did most of the work, and I just helped her with her back and made sure she didn't fall." 

"Oh," she said.

Amy's nudity did make me feel quite uncomfortable at first. I've always been quite prudish, as you may recall. I suppose it was no big deal to see my sister naked, but I couldn't help putting myself in her shoes (or out of them, I guess). In her place, I think I would feel quite humiliated. 

I asked Amy about this, and she said that she'd gotten over that a long time ago. In truth, she's never been all that modest anyway. In any case, by the end of the trip it didn't bother me much, but I still tried to keep my focus on her face. 

My other tasks were to help Amy with her medicines three times a day and to help her get dressed in the mornings, following the same on-off-on procedure with her shoes. Each morning, she had to wait patiently for me to put on the splint and shoes before she could go to the restroom. 

I also helped Amy stretch her hip and fingers most nights at bedtime, but often we were up so late that we were both too exhausted to make the effort. (Mom would have done it no matter the hour, but I'm lazier than she is, and also I'm a softy.)

Now, I'm going to tell the truth here. There were moments when I felt tired of all that responsibility. Nothing in itself was all that difficult, but it was work, and I was on vacation. I remember feeling the same way when my children were babies and toddlers, and I just wanted a break. Sometimes my nieces, Erin and Mindy, would take over baby duty when we were together, and I'd feel guilty over my intense relief. When Amy commented that this would be a real vacation for Mom, who was staying with our Aunt Judy, I felt very good about giving Mom a much needed break. She's been doing all of this work cheerfully for the last year and a half. 

The moment I indulged in the most self pity was on the morning when Amy laughingly poked me in the behind at 6 a.m. and told me she needed to use the restroom. It so happened that I'd had a terrible bout of insomnia the night before, brought on by too much rich food and the unaccustomed clock chimes that mocked me every quarter hour. Each time I'd started to get drowsy, the clock would sing out cheerfully, "You're still awake, awake, awake." On the hour, I couldn't help counting the bongs and feeling ever more desperate as the clock passed midnight, and then one, and then two. So in my defense, I'd had only about three hours of sleep at that point. 

All I said was, "Uhhnnn," but Amy could read my groan. "I'm sorry," she said contritely.

"No, it's okay. I just didn't get much sleep last night."

"I'm sorry," she repeated. 

"No, please don't apologize. It's okay. I'll try to go back to sleep." 

I wearily pushed my trundle bed under her bed and went through the usual routine with socks, shoes, and splint. 

After she'd made her way out the door, I closed it behind her and climbed into her bed, where I put a pillow over my head. While I waited for sleep to reclaim me, I realized two very important things:

1. It was a privilege to be taking care of Amy on this vacation. I remembered vividly those first few hours in the hospital when we were told that she might not survive, and if she did, there was a good chance she would never walk again. 
2. If anyone had a right to feel sorry for herself, it was Amy. She'd been stretched way, way beyond what she thought were her limits. She was utterly worn out and sore from all of that walking. She'd had to conquer her fear of climbing down steep steps outside our relatives' homes. She'd been literally paralyzed with fear, but she'd had no choice but to push past her terror. Finally, every day of her life, she has to wait for someone else to help her get to the bathroom, get dressed, and take a shower. How would that feel? Certainly much worse than getting woken up at 6 in the morning to help someone put on socks and shoes. 

After three more hours of sleep, I came out to the living room to find Amy playing Scrabble with Aunt Carol while our Aunt Donna looked on. When Amy tried to apologize for the third time, I took both of her hands and looked in her eyes. "Amy, it is a privilege to be able to spend time with you on this vacation, and it is an honor to be able to help you." 

She gave me a kiss and hug and then resumed her game. 

We had a lovely time with all of our family. Here were some of the high points.

• Entertaining ourselves by telling riddles over Chad's CB radios. Erin's handle was Her Majesty. Mine was Teach'.
• Riding with an Amish man in a horse-drawn carriage with Allyson and Kambry. It was so cool that I had to wrap myself in Amy's blanket. 

The two girls squeezed in right next to the driver, who declined to be photographed.

• Sitting around a bonfire at Aunt Judy's house, eating ham and beans that had been cooked in a giant cauldron. 

Austen, Allyson, Kambry

Melody, Amy, Me

• Visiting the dunes in Michigan City. I thought the climb to the top would do me in, but my heart, lungs, and legs held out. The view was spectacular. 

Chad and Kambry made Allyson into a mermaid.

Melody, Joe, Emily, Erin, and Austen climbed with me.

• Playing euchre with Amy, Jolinda, Allyson, and Kambry. Amy has begged me for years to learn that card game, but I'd always refused because the first time she tried to teach me, I'd been horribly confused by the ever changing trump suit and the fact that Jacks can be either high or low. This time, I picked it right up, and I was proud that Allyson was also quick to learn even though she's the same age I was when I'd failed so miserably (12).
  

  

  Me and Jolinda - note my jacket. I was always chilly

  
  I was most proud of Amy, who remembered all the nuances of the game, including evaluating a possible trump suit based on how many "tricks" she thought she and her partner could win. Just as she'd argued while campaigning to get the game started, this was a great workout for her brain--and ours.
  
  We played late into the night. Actually, the other four played while I watched; I'd allowed Kambry to take my place, and I served as a consultant for both of the girls.
  
  When Jolinda and Kambry were one trick away from winning, Jolinda said with a snicker, "Now I'll show you something that's kind of weird."
  
  I figured she was talking about yet another intricate rule.
  
  "No," her husband Jamie interjected with mock sternness. "Don't do that. That's just a weird family thing. It's not a real part of the game."
  
  "Yes, it is. We've always done it," Jolinda said, grinning. She googled it, and yep, it's a thing.

These are just random guys. We didn't think to take a picture.

She eyed Kambry soberly, "We're in the barn!" she announced. She laced her fingers and turned them inside out and upside down so that her thumbs hung down. "Now you have to milk my thumbs," she explained. Kambry pulled her thumbs, and then they switched. 

• Meeting my cousin Jenny, a fellow teacher, for coffee. We shared lots of teaching stories.

• Leaning against a wall in the corner of a pancake house, talking with my cousin Gerry (Jenny's sister) after the reunion for my dad's side of the family. We cried as we remembered how God had tenderly drawn each of us close when we lost our husbands--hers through death and mine through divorce. 

Me and Gerry about eight years ago

• The giant reunion for my mom's side of the family. The highlight was watching Allyson compete in the cornhole tournament. She was such a great sport despite being paired up against Jaime, the eventual tournament winner. 

All of these people (and many more) descended from Dad and Mom

And all of these people (plus lots more) descended from my mom's parents.
Kambry took this picture.

I could tell you many more stories, including one about a trip to Chicago that I hope to share soon, but for now I'll close with one more tale from the very end of our trip.

If the drive up was long, the drive back was interminable. Had it not been for The Help, which alternately made me laugh and cry, I don't know how I would have made it through our 17 hour day (including stops).

About an hour from home, around 10:30 p.m., I had to relinquish my audio book to Melody, who had borrowed it from the library. We parted ways at that point, and I drove my group to McDonald's so I could get an iced coffee. Because I was cold, I went out to the car while everyone else used the restroom. While I waited, I set my coffee on the roof of the car and did about 30 jumping jacks to get my blood pumping. A little boy stared hard at me as he passed by, probably trying to work out why an adult would be exercising in a McDonald's parking lot late at night. The boy's dad pulled him away by the arm, nonchalantly ignoring the crazy lady. I laughed out loud and continued my workout.

Allyson was much more vocal in her reaction when she spotted me. "What are you DOING?" she demanded as she and Kambry helped Amy out the double doors.

"I'm... getting my... blood... flowing!" I huffed.

"Well, you look crazy," she said. "And probably all the blood went out of your brain and you'll have no energy left when you get back in the car."

I think her hypothesis had some merit, because I was more exhausted than ever on that last leg of the drive. We made it safely to Kambry's uncle's house around 11:30, but then we had to wait five or ten minutes before someone woke up to let her in.

I had only 20 more minutes to drive, but I was so sluggish that I had to pray for strength to make it home.

As we approached the interstate, I carefully stopped at the intersection right before the underpass. I bobbed my head from side to side and slapped my leg, while feebly singing along with an 80s song. I'm not sure how long I sat there, but suddenly I noticed a car with wildly flashing headlights in my rear view mirror. I started violently. Maybe his brakes weren't working, I thought. I looked left and right and inched my car a few feet into the intersection.

A glance in the mirror revealed that the lights were still flashing, and I decided I'd have to run the light. As I lifted my foot off the brake, I looked up and realized that there was no light! In fact, I wasn't even sure whether there was an intersection. Either I'd been sitting at a stop sign, or I'd just randomly stopped my car.

If not for that car, I probably would have fallen asleep there. Thankfully, I was able to get us home safely, just after midnight.

Although I wouldn't make that drive again any time soon, the vacation was definitely worth the effort. I couldn't be prouder of my sister. I can't wait to see what else she is capable of.