The Not So Average Family
1st Edition
Published on 24. November 2022
312 pages
979-8-218-10965-3 (ISBN)
Description
With honesty and humor, The Not So Average Family shares the story of a the Wilsons, who faced unexpected challenges that evolved into on-going emotional turmoil. This "average" family had to stay on its toes as one set of twins was followed by another in an unplanned pregnancy. That was demanding in itself, but then came the discovery of a brain tumor in one child, then later a brain hemorrhage in another. Through the upheaval and uncertainty, Sally holds close to her determination and faith in herself. It is the story of a family that simply didn't give up.
More details
Content
- Intro
- Foreword
- Introduction
- I remember that day as if it were yesterday. It was a brilliant morning in July, and I was sitting at the pool after a swim. My eyes were closed and my face was tilted up as I let the hot sun wash over me. I was filled with a sense of contentment and gave thanks to the heavens for this moment. Then my cell phone dinged and I smiled even bigger as I saw it was a text from Patrick.
- Prologue
- December 1999, Elizabeth wanted to go Christmas shopping. I couldn't say no to her. We can do this, I thought. But I didn't think ahead to the possibility of running into people we knew. It was enough just getting her to the mall.
- 1
- Spring 1981, and as my dad liked to say, life was dandy. We were extremely happy to put our thousand-square-foot boring box of a house in the past as my husband, Bob, our four-and-a-half-year-old twin daughters, Amy and Elizabeth, and I moved into a charming older home. The first time I drove up, I was captivated by the wisteria trying hard to take over the front stone façade. The house wasn't large, but when I walked in and eyed the hardwood floors, bright and spacious rooms, and two fireplaces
- 2
- Not many families with two sets of twins five and under would describe their households as anywhere near calm or peaceful. But now that I can look back, ours was rather calm, compared to what lay ahead.
- 3
- The storm didn't arrive "packing a wallop," as the weathermen liked to say. A few clouds had begun to appear over our sunny family, but even if storm warnings had been posted, we would have ignored them.
- 4
- Despite the day-to-day frenzy of parenting two sets of twins, life was somewhat ordinary-for a while. We were elated with our new home. Amy and Elizabeth had the entire upstairs as their private domain, with separate bedrooms and a shared bathroom. Kate, at only three, shared a large bedroom with Patrick downstairs. The 1940s addition, which consisted of two small bedrooms and a bathroom, became a master suite. Though not ideal, it was our own small wing with a sitting room.
- 5
- These were the words from Matthew 17:20 that my grandfather read to me from the back of his small gold mustard-seed charm. I was thirteen, and my grandfather, whom I adored, was dying from leukemia. Before I could even read, one of my favorite things was lying next to him on his bed, my small frame with my small book, snuggled next to his large frame with his large book. Now I knew this would likely be the last summer my family visited him in Portland, Oregon, one of the last nights we read toge
- 6
- It was the first day of school and I joined the commotion of mothers and kids reading the list of first-grade teacher assignments. I was happy with Kate's teacher and glad to see that a couple of her friends were with her, but I could only gulp when I saw who Patrick's teacher would be. Oh no, not Miss Christopher, I thought. Miss Christopher was a cornerstone of Bruce Drysdale. She'd been teaching first grade there for who knew how long. But I desperately wanted Patrick to get some cute young t
- 7
- We were a couple of blocks from our hotel when Duke Hospital came into sight, dominating our view to the right. It was a large, imposing building, and my stomach briefly clenched, thinking that Patrick and I would be in there for close to two weeks. I felt lost for a moment, trying to fathom the life-and-death experiences going on within that building. I turned my head away and took a deep breath as Nancy pulled into our hotel parking lot. At least the hotel felt like familiar territory. The lob
- 8
- Throughout my life, there were times when I might wake up with a nagging headache, but I never remember waking up with a nagging stomachache. I didn't exactly feel sick, but as I opened my eyes, my stomach was in knots-and for a split second I wondered why. As the fog cleared, I recalled that this was the day of Patrick's Wada test. Despite our stressful adventures with sedation-free MRIs and the EEG machine, I would soon consider the previous three days as easygoing. We were getting into the ni
- 9
- April 14, 1989, early morning. I opened my eyes, not wanting to move on my plastic-covered thin mattress. I had scarcely slept, alternating between looking at the clock, listening to the activity, and glancing at Patrick sleeping soundly. I got out of bed quietly, relieved Patrick was still sleeping. I needed to finish packing our things, including books, games, and Mickey Mouse. His surgery was scheduled for nine that morning, after which we would be leaving this particular room for good. I tri
- 10
- I arrived home from Duke much less naïve. In a short time, I had become one educated mom on the goings-on in a child's brain. I could speak brain jargon with the best of them-neurons, lobes, hippocampus, right brain, left brain, oligodendroglioma, and so on. I had presumed that removing a tumor from the brain had no more lingering effects than removing a cyst from a leg. Go in, take it out, tissue heals-and as Patrick would now say, "Bada bing, bada boom," all would be normal. What was I thinkin
- 11
- The remainder of the summer was the carefree break we all needed. Without the demands of school, Patrick seemed like any other seven-year-old boy. For the last couple of years, he had been the center of our attention and the focus of considerable worry, and I knew the three girls felt the same sense of relief I did in anticipating a more ordinary, or average, life. With two sets of twins, Patrick's seizures and brain tumor, and Amy's scoliosis, I knew our family would never really be average-but
- 12
- Growing up in the 1950s, I begged my mom to take me to the library to check out any Dr. Seuss book I could find. In 1960, my family drove across country to Oregon in our big Mercury, and we all took turns reading Dr. Seuss books to my then, four-year-old sister, Patti. Patti was entertained, but it was Mom, Dad, Jeff, and I who laughed out loud at the ingenious words and rhymes-especially our favorite, The Cat in the Hat, with Thing One and Thing Two.
- 13
- Our friend and neighbor Mabel embodied the essence of Appalachia. This description is not meant to be demeaning, as warmth and love flowed lavishly from her oversized body. In our eclectic, diverse neighborhood, with an enormous Oakland Raiders offensive guard on one side of our house and a lawyer on the other, Mabel lived across the street in a small, simple ranch house. And it was Mabel who was the answer to my prayers, the solution to our major glitch: the kids' transportation after school. A
- 14
- It was the best of times, it was the worst of times. If Charles Dickens hadn't written that, I like to think I would have. Yes, it may have been the best of times, and while not quite the worst of times, I had a feeling they were lurking.
- 15
- Amy and Elizabeth were on top of their game as they headed into their final year of high school. They were well liked and respected, handling sports, grades, and even the care of their exasperating younger brother and sister with confidence and composure.
- 16
- As soon as school was out, I took Amy and Elizabeth to New York City for their graduation present. We began with a trip to the outdoor observation deck at the top of the World Trade Center. The girls peered right over the railing 107 stories high while I stood way back. I was much more comfortable dragging them around my old stomping grounds on Wall Street, introducing them to corned beef sandwiches at Katz's Delicatessen, and teaching them to use chopsticks in Chinatown. The Metropolitan Museum
- 17
- As much as my heart broke when Patrick wasn't invited to the Halloween party, I understood. His behavior was becoming more and more unpredictable. He was rarely physically aggressive, but his verbal abuse and anger were bad enough to make us wonder what was next. It was distressing to Bob and me, and I could only imagine how upsetting it was to Kate and her friends. The meds would help for a while, but then it was back to the drawing board.
- 18
- There were times when life was bright and we could stick our heads in the sand regarding Patrick and his future. It was bright that summer of 1995, the first summer Amy and Elizabeth were home from college. They had flexible schedules lifeguarding and teaching swimming, and could assume almost full responsibility for their thirteen-year-old siblings as I continued to work full-time. Kate's swimming schedule and Patrick's willingness to hang out at the pool made life, for once, a bit less stressf
- 19
- The class of 2000 was about to begin its freshman year at Hendersonville High School. With Kate's defensive shield becoming obvious and our eyes wide open as to Patrick's issues, I had an inkling the challenges that lay ahead would stretch us all.
- 20
- Guy's funk was temporary. We knew him well enough by now to understand it would take more than his Olympic disappointment to defeat him. Once the Games got under way, he went back to his busy schedule and was firmly established as our "older son."
- 21
- As challenging as it was to help Patrick, to remain patient with him, and to understand him, it was even more disconcerting to feel so uncertain as to whether he understood any of us. He seemed to go through life with blinders on, plowing along and not having a clue as to the emotional destruction he left in his wake. I thought, we all thought, that Patrick didn't get life at all, that he didn't get how much we were trying to help him, how much effort and care and concern his family and school p
- 22
- I never thought of us as particularly religious, but that was only because we weren't a family for which organized religion was a top priority. It's not that Bob and I were against it, but with Bob working six days a week, we simply didn't make time for church very often. We tried to get the kids to Sunday school-most of the time-and Bob and I even attended a service-some of the time. It was all rather hit or miss. That said, our faith wasn't hit or miss, and we did our best to instill a sense o
- 23
- And so the year of Henrik began. Henrik was serious, studious, and fastidiously neat-and he absolutely adhered to the straight and narrow. He couldn't have been more different from Kate and Patrick. They both thought Henrik was most uncool. Kate, who already had to put up with one uncool brother, was dismayed to have to put up with two now. As for Henrik, he didn't know what to think of Patrick, so he steered clear of him.
- 24
- Hope. As Kate and Patrick began their sophomore year, that was the word that best described our thinking-and with good reason. After Patrick's experience at Camp Greystone, he was ready to continue in the workforce. At age fifteen, Patrick came up with the idea of working at Ingles, our local grocery store, confident he could handle a job there. With Kate's help, he filled out an application and told Ingles he could work any hours after school and on weekends. He was hired, and he was ready. The
- 25
- The spring of 1998 did not end on the positive note I had looked forward to, especially for Kate. But for Amy and Elizabeth, it was once again the best of times. Two college graduates-Bob and I were ecstatic! Admittedly we weren't sure if we were jumping for joy out of pride or because we were unburdened by college expenses. Elizabeth decided to interview for a summer internship and then graduate in December. There was a plum internship with a large textile company that particularly interested h
- 26
- I remember exactly where I was when that dark cloud of premonition passed through my mind. I was at Ingles in Hendersonville with Elizabeth who was home for the weekend. We ran into a friend of mine, who asked, "Elizabeth, what are you doing home?"
- 27
- Collecting myself, I willed my adrenaline to kick in and went into fight mode. I put on my mustard seed. I wanted answers as to what happened, and I wanted them now. But even the neurosurgeon was unsure whether Elizabeth had suffered an aneurysm, a brain tumor gone haywire, or something else. We would know more in four to five days, after the tissue was analyzed. Of course, our thoughts went to Patrick's brain tumor and whether this incident was related in any way. How could it not be, with two
- 28
- Two nurses were focused on Elizabeth. Quiet and busy, they wrote on charts, adjusted tubes, rubbed Elizabeth's arm, patted her leg. As Brian and I entered the room, the nurses stopped, gave us a quick look, then glanced at the pictures on the dresser. They told us they would step out, and I gave Brian a quick hug and walked out with them. We talked at their station right across from Elizabeth's room, which allowed me to catch a glimpse of Brian. For a second, he stood awkwardly at Elizabeth's si
- 29
- Days turned into weeks, and the hour-long trip-up and down the mountain-from our house to Elizabeth's hospital room was becoming routine. Originally, Amy or Brian took advantage of the hotel room that Milliken provided in Spartanburg, but it was becoming apparent that our home, with its comfort and normalcy offered greater advantages than convenience. Nothing much was changing with Elizabeth. When we could "wake her up"-that is, by watching Elizabeth's reactions through her machines-it would giv
- 30
- Even after the excitement of seeing her eye open, I knew Elizabeth's recovery would still take a while. But it took more than just a while-at least that's how it seemed. Elizabeth wasn't back with us by any stretch of the imagination, yet what had just happened was a beginning. She could open her left eye and slightly squeeze our hands, and the lines on her machines danced. Elizabeth was soon able to open her right eye as well. But we found it more disconcerting than comforting when both her eye
- 31
- "I'll be there," he said. "Don't argue. There's no question I'm coming over." This was not as easy as it sounded. This was Guy, our cherished New Zealand swimmer who had lived with us for two summers and made our house his home base while he traveled the Americas. Guy was now living in London with his sister and was due to return to New Zealand. But when he heard about Elizabeth, he wrapped up his personal business, cut his work short, and changed his travel arrangements so he could get here to
- 32
- For a moment, I felt like I was on vacation-the feeling you have when you've finished all the preparations and you've traveled down the road or through the airport and you sit down for the first meal away from your house. It's the moment your whole being feels lighter, and you look forward to the days ahead. That feeling enveloped me as Amy and I sat in the booth of the classy old restaurant we'd chosen for dinner.
- 33
- I knew I needed to leave for home to haul out the holly. It was wonderful to see Elizabeth in the hands of such a capable and experienced staff, but letting go of a child of mine was not part of my nature. I decided to stick around to get an idea of how the Shepherd Center would go about this healing transformation, and the staff welcomed me as I sat in on a couple of classes.
- 34
- Was it really 2000? Was this really the year I had been so excited about, when Kate and Patrick would graduate from high school? Being part of Hendersonville High's first class of the new millennium made it seem even more special.
- 35
- Elizabeth's brain hemorrhage had put our family on unstable ground, and I alternated between determination and dismay
- I was determined to keep this family placing one foot in front of the other and dismayed at the effort that required. It took all my strength and gumption to keep me leaning toward the determination side. Amy was reeling, hit with the knowledge that she would need to assume a new role with her newly-unfamiliar twin. Kate continued to spiral downward from the accumulated stress c
- 36
- I pulled the big envelope from Western Carolina University from the mailbox and stared at it in disbelief. It was thick-way too thick to be a rejection letter. I couldn't believe that Kate had been accepted. Granted, her SAT scores had been darn good. But SATs aside, with her very average GPA, I had not believed she would be accepted to any four-year college, and a plan B-Kate's attending Blue Ridge Community College-had crept into our thinking. This possibility was a hard fact for Kate to swall
- 37
- The original phrase from the 1920s was not "a picture is worth a thousand words," but "one look is worth a thousand words." Nothing rang truer when Kate caught my eye as I sat in the auditorium balcony. Her look told of a thousand thoughts over the past dozen years. And her look broke my heart into a thousand pieces. The moving-up ceremony had just ended, and the seniors were streaming out. This was quite a different scene from six years ago when Amy and Elizabeth graduated, when Bob and I had s
- 38
- On December 26, 1920, John Farris Egolf II was born in Cincinnati, Ohio. Eighty years later, his wife, children, and grandchildren gathered with him to celebrate. Dad-or Baboo to the kids, and Bud to everyone else-was a popular man with a unique personality that brightened the lives of everyone around him. Though many would have loved to attend the celebration, we couldn't begin to think about inviting anyone outside the family as it would have created an enormous list. Besides, we were happy to
- 39
- The four of us watched in horror as the unbelievable events unfolded. The second plane had hit the South Tower, both towers were in flames, and it was obvious that many were already dead. I knew Elizabeth was scheduled to work that day at J. Crew, located only a few blocks from the Twin Towers. She had told me she was going in early so she could leave to join Kate for a birthday celebration near Grand Central.
- 40
- Though it was years before Allstate Insurance began airing its popular "Mayhem" commercials, one of the company's advertising crew must have been in our area and met Patrick, as there is no doubt in my mind that the character in those ads was based on him. Most people remember those ads, the deep voice announcing, "So make sure you have the right coverage to protect against mayhem, like me."
- 41
- After four years spending birthdays apart, Amy and Elizabeth were finally together to celebrate their 26th. And as it turned out, they'd have much more time together as Amy and Bailey had moved to New York City that summer. Amy had decided to join her sisters in the city, especially considering Elizabeth's hemorrhage and the 9/11 attacks. And wouldn't you know it, Bailey received a good offer for a role on the TV soap, As the World Turns. Never having watched a soap in my life, I was dubious, bu
- 42
- We thought we were so cute with the new message on our answering machine: "You have reached only Bob and Sally. Please leave a message." Anyone who knew us would realize it signified our much longed-for empty nest. No empty nest syndrome for us! No feeling of grief and loneliness. But that's not to say our-or, more specifically, my-days that spring of 2003 were free from worry. And we got lots of phone calls from our kids. I understood that most families were in that same boat with children leav
- 43
- We had a break in our lives-one we really needed. With perfect timing, Jenny Egolf, the kids' older cousin, announced her engagement. The wedding would take place at Timberline Lodge, Mount Hood, Oregon. Jenny was living in Portland after receiving her MBA. We had a history of summers spent on Lake Oswego just outside the city-I still have a picture of me as a one-year-old sitting on a stone wall outside Timberline Lodge. We were thrilled to have an excuse to go back!
- 44
- The noise was music to our ears as a multitude of chainsaw cowboys descended on our street. Throughout the night, Hurricane Ivan had swirled east to west across our property, toppling trees like toothpicks. They now lay uprooted across our road. With full foliage still on the trees and the ground saturated from Hurricane Frances two weeks earlier, it was a disaster waiting to happen. And it had.
- 45
- "Oh, I want to be in that number when the saints go marching in." We pictured Dad right in the middle of the saintly pack. That's how he wanted to enter the Pearly Gates, and we gave him a rousing send-off. The Methodist church wasn't thrilled with our idea of singing this song, though Dad had requested for his service. So we saved it for the large gathering at Jeff's house afterward. We handed out the lyrics, boomed the Kingston Trio's electrifying version over the speakers, and with loud, spir
- 46
- Taking an empty van to New York was exactly the activity I needed to distract me from worrying about Kate. Elizabeth's move seemed like a positive step, and at the time, I assumed, or hoped, that it meant Elizabeth would leave her new boyfriend, a young Irishman named Tommy. Tommy wasn't a bad guy-in fact he was quite nice, and everyone liked him. But he was six years younger, didn't have much education, and had no legal status in the United States-and no clear path to a green card except marryi
- 47
- Amy learned many things in Australia, the first being that she had brought way too many clothes. She left icy North Carolina in her warm boots and arrived in Melbourne sweltering under the hot summer sun as she was waited for Guy to pick her up. The two hadn't seen each other in years, and the first thing he said-in his sassy New Zealand accent-was, "What in the world are you doing with so much stuff?" After twenty-four hours of long flights and little sleep, Amy burst into tears. Welcome to Aus
- 48
- As it turned out, all it took was a slip to nudge our upswing into a dip. Shortly after closing the doors one Friday night at Whole Foods, Patrick delighted his coworkers by demonstrating how he could organize the nightly cleanup and dance at the same time. Music was blaring, and all those gathered were impressed as Patrick executed some cool moves, including a perfect leap-and-turn. But his landing was not so perfect, and the floor was damp, and he twisted his ankle. He jumped up, slightly emba
- 49
- On second thought, it wasn't déjà vu I experienced as Patrick and I drove to Duke the week before his radiation began. This time, he was not a dependent twenty-year-old, totally unskilled in domestic endeavors. Patrick was now twenty-six and had lived on his own for several years. That meant his whites were white after not being laundered together with his darks, his oven was clean to minimize smoke while cooking a frozen pizza, and he was a master at assembling a mean peanut butter, banana, and
- 50
- As excited as we were for Kate, it was now harder to say goodbye to Patrick as he left to fly back to Portland. He was getting more and more discouraged as he searched for interesting full-time employment. One bright light in his life was his new place-it was the small "caretaker" apartment of an old, rambling house set on a couple of acres in northwest Portland. He loved that this property was adjacent to one of the bike trails that stretched all over the city. Even more exciting was that he wa
- 51
- Kate's wedding was just a few weeks away, so I put any thought of meeting my son on the back burner. If it had been any other time, the idea of waiting would have sounded crazy. The Department of Social Services thought they had found him, but it hadn't been confirmed that he wanted to meet me. As supportive as Bob had been of my quest, he reminded me that I might be opening Pandora's box.
- 52
- Bob and I pulled up to the four-way stop, and Bob said, "Look, there he is."
- 53
- Seeing Patrick in Germany that September, I couldn't help thinking back on his years of doctors, hospitals, and mayhem. Even back in 2010, I had been unsure what lay ahead for him as I watched him wind through the security line for his flight to Munich. But when he met us in the courtyard of the Hofbräuhaus, dressed like all the German men in full Oktoberfest attire: lederhosen, tall socks, plaid shirt, and leather suspenders, I knew this was where he belonged. Patrick had never been happier. My
- 54
- I looked back at our amazing year: a wedding, finding Bobby, and a wonderful trip to see our confident Patrick in Germany, a place that he loved. We were sorry to leave Germany, but did so in high spirits. Patrick would be home in a few months-ready, I knew, to take on his future. He'd always have to monitor his disease, and he realized his hearing would worsen, but at that time, he had more confidence in himself than did a Harvard MBA graduate.
- 55
- Amy arrived in Portland for Elizabeth's due date, but the baby didn't. With their own birthday coming up on September 11, Amy decided to stay to celebrate with her twin. Feeling miserable, but as usual a trooper in tough situations, Elizabeth let us drag her to dinner downtown to celebrate their thirty-sixth, hoping all the activity would get her labor started. And it worked, because at 6:30 the next morning, Elizabeth's water broke. She yelled out and Amy and I were out of bed in a heartbeat. T
- 56
- We went from one expensive floral shop to the next. Think "Aspen expensive." Amy would walk into a shop, take one look at the displays of hearts and ribbons and imported pastel flowers, and declare, "Nope, not right." Rustic natural elegance was what Amy was after. "I don't know exactly how to create that feeling, but I'll know it when I see it," she said. By this time, Amy had worked with HGTV for many years, alongside designers who served clients such as Moen, Sub-Zero, Viking, and others. Amy
- 57
- Despite the brown landscape, our moods were bright as we walked into our home for the week. Amy and Bailey were a block and a half away at their friends' home, where Amy and I had stayed while planning the wedding. As Kate, Nathan, Bob, and I walked into the house, we were all smiles. The house had gleaming hardwood floors, two rock fireplaces, a huge master suite upstairs on one side, and bedrooms and bathrooms for the kids on the other side. Patrick had a private bedroom up a circular staircas
- 58
- After the brunch was over and cleanup done, I escaped to our house for a quick lie-down. I went up to our spacious bedroom and flopped down on the bed with its view of the beautiful Colorado scenery. The massive Spruce boughs trembled under the weight of the snow, and as I pulled up the comforter, I smiled, recalling the previous day and Amy's beautiful winter wedding. I settled my head on the pillows with a contented sigh. My thoughts traveled back to the previous Saturday night-when the snow p
- Epilogue
- Acknowledgments
- Photos
