Chapter 25
Hello, old friend, old foe. Bonnie paused on the sidewalk in front of the two-story, post-and-beam building that had housed the Center for Special Children
in Strasburg since more than a decade before she was born. Her gaze traced the dormers and the little cupola on top, memorized
the gray exterior and brown trim, the benches where she’d sat many times mulling her future in the shade of red maple, hawthorn,
and box elder trees. Her future in those days hadn’t included a Plain man with few words, big blue eyes, dimples, and blond
hair that needed cutting. It wouldn’t include this building much longer either.
Maybe one day, God willing, Elijah would go with her for her visits at the newly constructed clinic in Gordonsville.
Mom’s hand rubbed her back. Swallowing the lump in her throat, Bonnie raised her face and let the hot June sun dry up the
urge to cry. “Is it weird that I’ll actually miss this place?” The clinic, built by Amish and Mennonite men in 1986, was being
replaced by a much larger one in Gordonsville about seventy-five miles south of Strasburg. It would actually be a shorter
drive from Virginia. “There have been plenty of days when I really hated this place.”
“I suppose there’s a sense of security in coming here.” Mom raised her face to the sun and smiled. “Change is hard. But everybody’s talking about how amazing the new building is. So much more room. This old building was never intended to see this many patients, especially children who have grown into adults with all the treatments that research has provided.”
Bonnie pushed forward toward the double doors. “In a way it’s sad that there’s such a need for these services. It seems like
there are so many ways our physical body can go haywire.”
“But it’s a blessing that this place exists where so much research has been done and new treatments discovered.” Mom was in
a glass-half-full mood. “Plain and Mennischt boplin died of many of these genetic disorders before the clinic doctors started doing their research. We didn’t know our
Plain ways led to the founder effect.”
“It seems almost cruel.” Bonnie waited while her mother opened the door so she could pass through. “Scripture tells us to
hold ourselves apart from the world. To not be conformed to the world’s ways. We obey Scripture and only marry within our
faith. So what happens? We end up with all kinds of awful, rare diseases.”
“Bart could give a whole sermon on original sin in answer to that question.” Mom led the way through the reception area. Check-in
was quick. Bonnie was a regular. Mom picked a seat where they could see out the window and admire the stands of trees in the
distance. “God doesn’t cause these ailments. He allows them because a faith untested is a weak faith.”
“Like the fact that you and Dat only have one bopli, and she has SMA3.”
“Gott knew what He was doing. He gave His beloved kind to a couple who would love her with all their heart, just like He does.”
They’d had this conversation more than once over the years. Mom’s responses never wavered. Comfort could be found in that
fact as well.
Twenty minutes later they were led into Dr. Newcomb’s exam room, where they waited some more. It wasn’t so bad. Photos of Amish farms, horses, and Virginia’s Blue Ridge Mountains adorned walls painted a friendly eggshell blue. The air, which smelled lightly of cleansers, wasn’t frigid the way it so often was in the medical buildings Bonnie had visited far too often growing up.
Mom pulled a copy of Murder Simply Brewed by Vannetta Chapman from her canvas tote and started reading. As a veteran of many doctor visits, she knew how to come prepared.
Bonnie occupied herself counting squares on the tile floor. She was too tied up in knots to read at a time like this.
She shouldn’t be, but she was. Es dutt mer, Gott. Bart said God never got tired of hearing those words. He wanted His children to come to Him, confess their sins, and beg
for forgiveness. It gave Him a chance to show His mercy and grace. To say, “Go and sin no more.”
That last part was the hard part. How many times had she laid her worries at the foot of the throne, only to pick them up
again? And again. And again.
“Es dutt mer. I did it again, Gott.”
“Hmm?” Pushing her glasses up her nose, Mom looked up. Her befuddled expression said she’d been deep into the story. “Did
you say something?”
“Just apologizing.”
“To whom?”
“Never mind.”
Fortunately, at that moment Dr. Newcomb bounced through the door like she had loaded springs for legs. She had to be fifty-five
or sixty. Her silver hair was so short that she could’ve been a boy except for the chunky turquoise jewelry and tortoise-shell
glasses she favored.
“What’s up, missy?” The neurologist positioned herself in front of a computer on a stand that went up or down depending on the height of its user. Being tall, she pulled it up. She entered a few keystrokes, then swiveled to smile at Bonnie and her mother. She always exuded good cheer. Always. No matter what day of the week or what Bonnie’s problem might be. “I hear you’re concerned about progression.”
Bonnie explained in short order. Her doctor studied something on the computer screen. “You’re due for your Spinraza injection
today, so let’s get that out of the way. Then you can see the Bobbsey Twins. We’ll get Deb to test your grip strength.” That’s
what Dr. Newcomb called the occupational therapist and the physical therapist, who operated as a team for the purpose of these
visits. “Have you been doing your exercises?”
“I have.”
“Any falls?”
The most hated of all the questions. It was a badge of honor to be able to say none. “Just one, and it was really stupid.”
More nose wrinkling, this time along with a wrinkled forehead. “What happened?”
Bonnie recounted the series of unfortunate events that led to her sprawled on her back with her rollator on top of her and
Slowpoke barking loudly.
“Let’s try not to do that again.” Dr. Newcomb rarely used her severe tone, but falls were one area where she reserved the
right to chastise. Patients could end up with fractured bones, concussions, cuts, scratches, or worse. “Were you hurt?”
Only her dignity and, perhaps, her vanity. “No, just a little scratch on my wrist and some bruises on my arm.”
Dr. Newcomb typed for several seconds without speaking. Finally, she looked up. The frown had disappeared. “Have you been
wearing your ankle-foot orthoses?”
“She has.” Mom answered for her. “She spends a lot of time on her feet at the shop.”
“Any shortness of breath? Trouble sleeping?”
“No shortness of breath. The sleeping is the same.”
Despite multiple muscle relaxants, her tightened hamstrings and calves never relaxed. Neither did the ones attached to her
fused spine. Rolling over was hard. Then there were the headaches. Dr. Newcomb knew all of that.
“We’ll do the respiratory testing as usual. Any UTIs?”
“No.” Thankfully. The antibiotics needed to cure a urinary tract infection had their own set of challenges. “Not since before
Christmas.”
“Good. How are things going at the shop? Are you doing big business?” Dr. Newcomb peered over her reading glasses at Bonnie.
“Are lots of vendors with disabilities lining up to sell their wares?”
“Even ones without disabilities.” Mom’s sly grin signaled what she was thinking about. “Even a young man.”
“Mamm. Sei so gut!”
“Ah, someone special.” Dr. Newcomb’s smile held delight and approval. “This is getting exciting. I’d like nothing more than
to one day receive a wedding invitation in the mail.” The doctor studied the computer screen. “How’s your appetite? You’re
down two pounds. Are you eating enough?”
“I’m eating plenty.”
“She’s always on the run—so to speak.” Mom grimaced. “You know what I mean.”
“I do.” Bonnie hoisted herself to her feet. “I’d really like to get the shot over with.”
A person never really got used to having a needle stuck into the spinal fluid around the spinal cord. The spinal tap usually led to a headache, backache, and occasionally vomiting. Still, the side effects were worth it if the medication staved off progression.
“Maybe you should see the dietician.”
Dr. Newcomb was still on the weight-loss issue. No need. It was a fluke.
“I have all the printed materials she gave me. Besides, Mom is a gut cook.” And she never stopped slipping a second helping
onto Bonnie’s plate every chance she got. “The garden will be full of vegetables soon. I eat salads, fruit, vegetables, all
the healthy stuff. I’m gut.”
“Okay. I’ll stop by after you’ve been to PT, OT, and RT, and we’ll talk again.”
Fortunately there was no waiting in line for the injection. Forty-five minutes later Bonnie sat in the physical/occupational
therapy room, her gaze focused on her hands. Maybe it was just her imagination. Maybe she’d had a bad day. Maybe today the
strength test would show no change. Or better yet, maybe she’d grown stronger in some miraculous turn of events.
The occupational therapist, Deb Van Dyke, looked more like a high school girl with her long brown hair in a ponytail, her
sandals, and the chewing gum. But she was all business. “I brought my trusty hand dynamometer. Remember, it’ll feel like nothing
moved. Just squeeze your hardest and let go.”
She said this every single time, as if Bonnie would forget.
They repeated the familiar routine on both hands. Deb typed in her usual rapid-fire motion. Then there were the other manual
tests of strength in her arms. “Okay.” Deb swiveled in her chair and faced Bonnie. “You were right. There’s been some deterioration
in your grip strength, about two points down on both hands. I know that’s not what you wanted to hear, but it’s not unexpected.”
That didn’t help at all. Her grip strength had already been poor. Now it was very poor. Why pray if a person never received the answer she wanted?
“Gott’s will, not yours.” The deacon’s words during baptism class rang like an accusation in Bonnie’s ears. Why give her a longing to have a baby if
she could never care for one? She couldn’t be sure she wouldn’t drop this fragile creature.
She could have a baby. She simply couldn’t take care of it the way other mothers did. Elijah said it didn’t matter. He said
that now, but what about later? How many buggy rides would it take before he began to see what yoking himself to a woman like
her would mean?
A lifetime of caregiving. It was a selfish thing to do to Elijah.
Bonnie’s throat ached at the thought. She wasn’t a selfish person, but giving up on something so lovely so soon sent a fierce
pain arching through her body.
That sweet kiss. A first kiss. A first buggy ride. With no second or third one? Surely God didn’t ask that of her. Or maybe
He did. Was this a test?
Oh, sei so gut, Gott, don’t make Elijah my test.
Elijah could marry someone else, have a dozen children, and never look back. If Bonnie stopped it now. Give me a sign, Gott. Could I have a sign?
And what about the sewing? Her way of making a living? She avoided her mother’s gaze.
“No worries, Bonnie. I’m taking care of the sewing. You have plenty to do with running the store and keeping the books.”
Maybe, but the making of dolls and stuffed animals gave her joy.
That too, Gott, would You take that too?
Bonnie heaved a breath. “There’s nothing to be done, I guess.”
“In so many ways, you’re doing great.” Her tone filled with compassion, Deb backed away from the computer stand. “Do you have any questions for me?”
“No. Thank you.”
“If you ever need anything from me, any advice, any questions answered, you know where to find me.” She never failed to say
that. These people had such a heart for helping people like Bonnie navigate this disease. It took a special person to work
at this clinic. “I’ll turn you over to Jeanie.”
The physical therapist, short and chubby with even shorter hair than Dr. Newcomb, was Deb’s polar opposite physically. But
she had that same deep well of compassion as her colleague. She did the usual push and pull of Bonnie’s legs. The spasticity
hadn’t changed. Three kinds of muscle relaxants daily, and Bonnie’s legs wouldn’t bend the way they should. “Are you still
doing your stretching exercises?”
“Every day. For all the good it does.”
“Taking your pills?”
“Yes, ma’am, for all the good they do.”
Jeanie smiled and said the same thing she always did. “Imagine how much worse the spasticity would be if you didn’t do the
stretches and take the pills. You don’t have a lot of muscle spasms, and your hands and arms don’t seem to be greatly affected.
That’s the good news.”
She was right. Sometimes a grumpy bug infected Bonnie when she entered these familiar exam rooms. For a reason. When she first
started coming to the clinic as a child, she’d labored under the naive illusion that they could fix her problem. They could
make it so she could walk again. Maybe even play baseball or skip rope or jump up and spike a ball over the volleyball net.
The realization that the staffers could only help her manage the symptoms took its time sinking in—mostly because she was too young to understand and then too stubborn to believe it. She prayed every night for God to fix what the doctors couldn’t.
That didn’t happen either. God’s will be done. That’s what Mom and Dad always said when she asked about it. Finally she stopped
asking.
“Have you been doing your neck and shoulder exercises?”
“Yes, when I have time.”
Jeanie kept adding exercises until it would take half the day to do them all. “I noticed when you walked in that your shoulder
curvature has worsened. The rollator and hunching over your sewing are taking a toll, I suspect. Try to do the exercises every
day. And remind yourself to straighten up as much as you can when you’re using the rollator.”
Which wasn’t much. Nobody liked being a twenty-five-year-old hunchback, but no amount of exercise would change it. “I do.
I will.”
Still seated, Jeanie rolled on her stool to the counter near windows that afforded them a view of the wooded lot next door
to the clinic. She picked up a stopwatch. “Okay, my friend. Let’s do the TUG.” The TUG, short for Timed Up and Go. “Let’s
see how your gait’s doing.”
Bonnie excelled at the TUG. Always being in a hurry at the shop assured that. She sucked in air and prepared to give it her
best shot. She had to stand up, walk ten feet, turn around, walk back, and sit down. This tested how fast she could safely
do it. It also allowed a determination of whether she was a fall risk.
Which she was not. Emphatically not.
“Remember, no rush. Be safe. Okay: ready, set, go.” Jeanie punched the stopwatch.
No rush. Ha!
Bonnie stood, pushed across the room to the piece of yellow tape on the tile, turned, and hiked back. The second she sat, Jeanie stopped the watch.
Bonnie had learned early on that the goal was for patients to be able to get to the tape and back in seven seconds—the amount
of time a pedestrian had to cross the street before a green light turned red. “How’d I do?”
“You’ve lost about two seconds.” Jeanie sounded apologetic. “Your gait has a wobble in it that wasn’t there four months ago.”
“That’s not possible.” Bonnie closed her eyes against tears that burned. No crying. She opened them. “Let me do it again.
I’m sure I can do better.”
“Unfortunately, your legs will be tired after doing it once. Your time will be longer if we do that.” Jeanie typed a few keystrokes.
Then she turned, leaned forward on the stool, and planted her elbows on her thighs. The compassion on her face was almost
too much to bear. “Dr. Newcomb made a note about your fall.”
“It was silly. I tripped over a dog. It has nothing to do with weakness.”
“With the progression we’re seeing, it might be time to consider a wheelchair.”
“No, no, absolutely not.” Stifling a sob, Bonnie grabbed the rollator’s handles and stood. “It was a stupid accident. No reason
to act like it was a big deal. I’ll exercise more. When I come back next time, I’ll be stronger than ever.”
Exercise didn’t help. It didn’t hurt. But the effect didn’t last. No matter how hard she tried.
The rollator didn’t allow for dramatic exits. Not waiting for her mother, Bonnie rolled from the room. If she tried to race
out, she’d end up on the floor. And then in a wheelchair.