Within a week of his arriving, however, Rux became very ill. He had diarrhea so badly that when we changed his diaper, we didn’t bother fastening the tape, and we’d wrap a towel over the diaper because his legs were so bony that the diarrhea would squirt out through the leg holes. Erma Lee rushed him to the clinic, and Dr. Morris told us to take Rux straight to the hospital. He remained in the hospital for weeks. Erma Lee stayed with him from sun up to sun down, and she often spent the night.
When it was obvious that his condition wasn’t improving she began to question the doctors’ motives. “They got needles in his head, they constantly runnin’ that medicine through his veins, they ain’t feedin’ him, so how in the world is he still runnin’ off?” It was 1978, and with Tuskegee[8] never far from the minds of those from that generation, she suggested that the doctors were intentionally keeping him sick. She decided that Rux’s recovery was up to her.
Coming home in the evenings, she would go in the kitchen, crush some type of herb into a fine powder, simmer it, mix it with another concoction, and then draw it up into little oral syringes. She’d place the syringes into sandwich bags and put them in her purse. “When the doctors and nurses finish with him,” Erma Lee said, “I pull the curtain and squirt that medicine in his mouth. Then I lay my hands crossed his tiny body, and I plead the blood of Jesus.”
Rux recovered. I hadn’t seen him since the day we’d rushed him to the hospital, so when I came in from school and saw him on Erma Lee’s lap, I couldn’t believe it was the same baby. He was so fat, it looked as if his clothes would burst at the seams. To accommodate the IV needles, his head had been shaven on both sides leaving him with a fluffy Mohawk.
The doctors had prescribed a special formula that was quite costly. Nutramigen, it was like powdered gold, and every morning Erma Lee would count the cans to make sure he had enough. And when she would brag to others about how God had healed Rux, she would always mention the special formula, which she insisted on calling Neutrogena. People would say, “I didn’t know they made baby formula,” and she’d say, “Oh yes, and it’s very expensive.”
Now that Rux was home and doing well, we received a phone call that none of us was expecting. His caseworker was coming to get him, to place him in a new home where a young couple was ready to adopt him. Erma Lee was to gather his things and have them ready. She gathered a lot of things that day, but none of them belonged to Rux.
She gathered documents and phone numbers, faith and courage, and she went on a phone-calling campaign that lasted hours. She opened the phonebook and called every single number listed under the Department of Child Services. She caused such a commotion that the caseworker’s supervisor called and said they’d hold off on removing Rux from the home until his case could be fully reviewed. That period of “holding off” was just the break Erma Lee needed.
A couple of years earlier, I’d won on award for an essay I’d written on President Woodrow Wilson. The contest was sponsored by The Daughters of the American Revolution, and I’d taken first place. “I want you to write a letter to the head man down to Child Services,” Erma Lee said. “I want you to write as good as you done when you won that medal.”
So I listened as Erma Lee told me what she wanted to say. “Now you go ‘head and word it the right way.” So at 12 years old, and to the best of my ability, I did. When Erma Lee heard from Child Services again, it was to tell her that Rux was eligible for immediate adoption, and she and Paw-paw had first option.
The day of the adoption, we all woke up early and dressed nicely. Erma Lee bathed Rux and before dressing him in his navy sailor suit, she held his naked, brown body in the air and said, “Is you ever seen a finer baby? Look at the muscles on him… built like a Mack truck.” Then, still holding him under his arms, she turned him slightly and kissed him on his bottom. “If he ever grow up and say nobody loved him, you tell him not only did I love him, but I kissed his butt.”
The eight of us (Paw-paw, Erma Lee, a son that had already been adopted, Rux, and four foster children, including me) piled into Paw-paw’s brown Ford LTD and headed to the courthouse. We gathered around a table in a posh conference room where Erma Lee and Paw-paw signed the necessary documents. Ruxnell was ours. After the ordeal with Rux, Erma Lee knew that adopting Mikey was out of the question, but she’d hoped that he would’ve been allowed to stay and grow up in the house without being adopted, very much like I had, but it wasn’t to be.
Chapter 15
“She jumps off things.”
“How do you mean?” The doctor asked.
“The front porch, furniture, stairs…”
“I wouldn’t put too much thought into it. Toddlers like to push the boundaries; it’s how they learn their limitations.”
“See that gash on her chin?” I asked him. “She jumped down the stairs and landed bottom side up on the heat grate. I thought she’d never stop bleeding.”
“Well, sometimes they learn the hard way, but at least now she knows that jumping down the stairs is dangerous.”
“But that’s just it; the next day, she was right back at it.”
“You’d better keep an eye on her then.”
That’s all the doctor could tell me, keep an eye on her, which was quasi-doable. But she would start school soon. Then what? Nicole was more intrepid than any child I’d ever seen. Perhaps school and the structure it provided would mellow her; at least that’s what I told myself.
We had gone to St. Stanislaus School during orientation to meet with the sisters and complete the paperwork. Only the older children wore uniforms, so on the first day, I dressed Nicole in a red and white Gingham smocked dress. On the front, the letter “A” and the number “1” were appliquéd to a large pocket shaped like an apple. She wore white ankle socks and black patent leather Mary Janes. Her hair was in two long pigtails.
Though St. Stan faced Indianapolis Boulevard, many parents parked on Magoun Avenue, which ran along the back side of the block. There was an esplanade between the church and the arboretum that led to the courtyard where the sisters would greet the children each morning. As I pulled into a parking space, careful of the older kids dressed in plaid uniforms, I rehearsed my speech one last time.
I would tell Nicole that school was for big girls and that it lasted only half a day. As soon as it was out, I would be right here waiting for her. But before I could take the key out of the ignition, she jumped out of the car and tore off down the esplanade, a red streak darting in and out of a sea of brown and yellow plaid. By the time I reached the courtyard, she was already in line with the other children, the sister giving firm instructions on how they should conduct themselves while walking down the hallway. Nicole never turned around to blow me a kiss or say good bye. I watched until she disappeared through the doorway.
After that, when friends talked about their children’s first days of school, with all of the hugs and tears and weepy goodbyes, I remained quiet, unwilling to crush the nostalgia with, “Yeah, my daughter took off like a torpedo and never looked back.”
By the time Nicole was seven and we’d moved south, I had grown accustomed to her intrepidness, but when Nicole was at play with other children, I realized how unnerving for other parents her grittiness could be.
One summer afternoon, my friend Sherry and her daughter Laura stopped by for a visit. Sherry and I relaxed on the patio while the two girls played. Suddenly, Nicole shouted, “Go!” We looked up to see the two girls running toward the back of the property at the end of which was a small embankment. Upon reaching the edge of the drop-off, Laura skid to a halt, turned around, and backed herself down the levee. Nicole, on the other hand, picked up speed and jumped full throttle over the edge, her arms and legs spread eagle against the sky until she dropped from sight. “Oh my God,” Sherry gasped. Then she spun around to me, “Why are you just sitting there?”
“She’s okay.”
“What do you mean, ‘she’s okay’? She could be laying down there right now with a broke neck.
”
Just then, Nicole scampered back up grinning from ear to ear, twigs in her hair, her face flushed with excitement. She giggled to Laura, who was coming up behind her, “Wanna do it again?” Before anyone could say anything, Sherry yelled, “No! Get over here, Laura LeeAnn Echols.” Nicole skipped over to me, pigtails bouncing on her shoulders. She dropped down in my lap and asked, “What’s the matter with her?”
“She’s not used to the way you play.”
“Is Laura gonna get in trouble?”
“No, her mother just doesn’t want her to get hurt.”
“Why would she get hurt? We were just playing.”
I listened as Sherry, in her choppy, southern twang, scolded Laura for following Nicole to the embankment and then turned and scolded me for not putting a stop to it. “Does she run around jumping off stuff like that all the time?” I thought for a moment. There was really no easy way to say it.
“Pretty much.”
“Doing stuff that’ll get her neck broke?”
“Well, pretty much.”
She let out a long sigh. “I see right now I can’t let those two play alone together. My poor child will end up maimed, with a broke neck.”
Though I was curious, I didn’t ask her if “broke necks” were a common occurrence in her family. But this was Nicole; it’s who she was, how she played, and how she would live her life—running full speed, savoring the free fall, and giving very little thought to how she’d land.
Aside from her moxie, Nicole’s grades were always very good. Her standardized test scores were above the national average, and her language skills, especially, were exceptional, which was somewhat of a two-edged sword. Her teacher had said, “Nicole finishes her work, and then she engages the other students. When she’s reprimanded she’s determined to have the last word. I will not be forced into a debate with an eight-year-old in my own classroom!”
During parent-teacher conference weeks later, her teacher said that Nicole was no longer talking back and that when she told Nicole how impressed she was with her good behavior, Nicole said, “My mommy told me if I talked back to my teachers again, she was gonna take me to Funky Town.” I chuckled nervously, but the teacher assured me, “Hey, whatever works.” Back talk aside, if action was the order of the day, Nicole was always the first in line, and it seemed the riskier the action, the more she was drawn to it.
I heard somewhere that people who are risk takers often have children who are risk takers. I, however, am not a risk taker. As a matter of fact, I can calculate the consequences of an action down to the third or fourth generation and explain why those actions should be avoided at all costs. Nicole, on the other hand, had little concern for such petty details.
I’ve also heard that traits often skip a generation. If this is true, it explains everything. I was no stranger to the uneasiness that often accompanied Nicole’s actions because as a little girl, I’d felt the same uneasiness with my own mother.
On one occasion, when I was six or so, my mom and I had pulled up in front of Aunt Katie’s house and noticed the guys huddled around something near the back of Uncle Rosco’s workshop. As we approached, my mother joked, “What the hell are you guys up to back there?” And when they fanned out, we could clearly see a shiny new motorcycle. When my mom asked where it had come from, they all started talking at once. Over all the voices, someone said, “I bet you can’t ride it.” And just like that, as if someone had flipped a switch, my mother dropped her purse and keys on the grass and straddled the bike. One of the guys had to kick start it for her, but before he could tell her what to do, she took off, lurching and lunging, through the backyard. The yard extended to the Back Road where she drove through a chicken-wire fence and plowed down a row of mailboxes.
As she came to a rest on the Back Road, Chuck, Jim, and David—yelling for her to stay put—took off running in her direction. By the time they were halfway the backyard, my mother had revved up again and was coming back toward the house. The guys, who seconds before were running to her, were now running from her. There was so much commotion that Uncle Rosco came out of his shop to see what was going on. Seeing the potential hazard that was heading our way, he scooped me up and took me into the shop before going back out himself.
When the disaster came to a halt, I stuck my head out to take a peek. The four stunned men were looking at my mother, who was quite calmly dusting herself off. She gathered her purse and keys off the ground and said, very matter-of-factly, “I said I could ride it; I didn’t say I could stop it,” and then she disappeared into the house and shut the door, leaving the men standing around the bike, which was lying on its side.
Nicole’s impulsive and intrepid personality, like her grandmother’s, made angst a necessity. Angst was as much a part of my life as my own two hands, which, also by necessity, were often clasped in prayer.
When Nicole was diagnosed with diabetes at the age of nine, her impulsiveness intensified. Nicole and I were separated when she was diagnosed. She had gone back to spend the summer with Erma Lee. It was during that same summer that I decided we should move back north. “Go ahead and let her start school here,” Erma Lee had said, “and then you come on once you get things squared away.” I had planned to make the move in December, but in October Erma Lee called and said, “Come home quick! This chile’s got the sugar.”
When I arrived, Nicole was in ICU. She had been admitted to the hospital with a blood sugar of 1100. The nurse said that in her 26 years of nursing, she’d never seen anyone with a blood glucose that high who was still walking around. I asked Erma Lee how she knew something was wrong. “That chile was drinkin’ water straight from the tap. Had her whole head down in the sink like a horse at a trough. Then she run upstairs and pee. Drink and pee, drink and pee… the whole time she was walkin’ sloop legged; I thought she was havin’ a stroke.”
Nicole remained in the hospital for two weeks and received extensive diabetic training, which included giving herself insulin injections. When the doctor asked her if she knew how she got diabetes, she said, “My grandma said I got it from drinking all that sweet-tail Kool-Aid.” But the doctor assured her that nothing she did caused her to have diabetes.
Most of her stay in the hospital was spent trying to regulate her blood sugar. It swung, like a pendulum, from high to low, and when it swung, so did her mood. For a nine-year-old, she handled it all incredibly well. She mastered her injections and refused to let anyone else stick her. Even during hospitalizations, the nurses would let her administer her own injections. She had a method that was painless, and she never developed dimpling or track marks on her skin.
One thing the endocrinologist stressed was that Nicole should drink plenty of water because high blood sugar and dehydration went hand in hand. After he explained it to her, Erma Lee, fearing she might not have fully understood, explained it in simpler terms: “Drinkin’ lots of water will keep your blood from turnin’ to syrup.”
If she didn’t understand anything else about diabetes, Nicole understood that she needed to drink lots of water. Because of the diabetes, she was always thirsty anyway, so the demand to drink lots of water was a win-win situation. But when she was diagnosed with renal failure and eventually placed on dialysis, this same win-win quickly became a lose-lose.
On dialysis, she was restricted to 34 oz of fluid per day. Normally, she drank five times that much. When they’d tell her to stop drinking so much, she’d say, “Do they know what it’s like to be thirsty, and live in a house that has four water faucets?” She didn’t have to convince me. I know all too well what it’s like to be tempted in such a way. I have difficulty sleeping at night if there’s anything in the house with frosting on it.
The first signs of kidney problems surfaced when Nicole was 13. The endocrinologist wanted to do a biopsy to see if the problem stemmed from the diabetes or from another cause altogether.
The biopsy showed a condition called minimal change disease, and the doctor said it wasn’t related to
the diabetes, “It’s just one of those things that sometimes happens to children,” she’d said. Nicole was placed on prednisone, but it failed to produce the desired results.
When the doctor had decided to do the biopsy, she’d told Nicole, who was reluctant to have it done, “We can’t make you better if we don’t know what’s causing the problem,” so Nicole was not happy when, after having undergone the biopsy, the prescribed treatment wasn’t working. She believed the doctors were working against her getting well, and Erma Lee’s constant warnings to “Be careful what you let them do to her,” had not fallen on deaf ears.
It’s difficult for people to remove themselves from cultural mindsets, and one mindset of the senior citizens in the Black community is to keep a healthy distrust of the medical community. The first time I’d heard that doctors and hospitals shouldn’t be fully trusted was when Rux was ill, and Erma Lee had suggested that his lack of recovery was intentional. Then some years later, another situation arose that seemed to validate the claim that not all doctors should be trusted.
Erma Lee had developed a bloody discharge from her breast. She mentioned it to the doctor she was seeing, who did a physical exam and said the bleeding was caused by hormonal changes. So for the following year, she kept a handkerchief stuffed in the cup of her bra to absorb the blood.
However, when she later went to the hospital because of problems with her ulcer, the ER physician asked how long her breast had been bleeding. She told him it had been going on for about a year. He insisted on a biopsy, and she agreed to it. Although she had gone into the hospital for her ulcer, she came out with a radical mastectomy and a diagnosis of breast cancer.
The Truth About Butterflies: A Memoir Page 11