Robert (Nicholas) Johnson
Nicholas was born on March 22, 1993 at approximately 6:00 a.m. at Baylor College of Medicine in Dallas, Tx. He was 2 lbs. 1.5 oz. and 14-1/2” in length. He stayed in the Neonatal Intensive Care Unit for approximately 2.5 months before he was able to go home with a monitor. Immediately after birth, Nicholas was put on a respirator and put in the NICU. His lungs could not handle the pressure of the respirator and suffered numerous pneumothoraxes. The staff changed from the traditional respirator to high frequency respirator and gave him some surfactant. He was able to begin to breathe and his condition improved slowly. He finally went home to our small house on Lake Cherokee.
Nicholas was slow to develop physically, but that did not stop him from joining all the activities his family did, including swimming, boating, camping, hunting, etc. He went everywhere the activities took him. His first bed at the deer lease was a small dresser drawer lined with baby blankets and a small crib mat. He wore an insulated jump suit/snuggy to keep him warm. He went out in the boat when his parents went skiing and rode in his car seat under the passenger front dash. Nicholas has always had a love of animals that started at an early age with the greeting of his family’s Irish Setters upon arrival to home. Nicholas had his first trip to the zoo with his Aunt Bunnye and loved seeing all the zoo animals.
His Dad took a job in Houston in late 1994 and the family moved to live with his grandparents initially, while house hunting. Nicholas had learned to cruise the furniture sometime after his first birthday but could not walk unassisted until he was 2 years old. His first steps were from the couch to his PawPaw’s chair. He would crawl up into his PawPaw’s chair and wait for him to get home from work. He loved his PawPaw and MiMi. He also loved and enjoyed seeing his Granddaddy and NaNa regularly, Nicholas loved swimming in their pool and watching the cats. Nicholas pretty much loved everyone; he certainly never met a stranger. Nicholas was slow to develop, so he visited many doctors to determine the cause. Valerie took him in for a checkup in Houston, there was an older gentleman sitting in the room, and he crawled up in his lap starting a conversation with him. He loved everyone…
He moved to the house he would live in the rest of his life in 1997, just before his sister was born. Before his sister arrived, the doctors diagnosed him with Duchenne Muscular Dystrophy. It was devastating to his parents, but not Nicholas. He loved life, his family, and all the activities he did. He and his family travelled back and forth from Houston to their little lake house, where he loved to go over to his MiMi and PawPaw’s lake house, so he could run as fast as he could and jump off the pier into the lake, then climb back out and repeat the process over and over, and over. He would do this all day with his sister Ashley and his cousin Jamie. He loved watching the fireworks from the boat on many Fourth of Julys along with his extended family including all his Dad’s family and sometimes his Mom’s too. He also learned to ski on one of those ski boards that the rope attached directly to the board back to boat. He loved travelling to the family’s best friend’s lake house near Lake Texoma too. They would go there every year for Memorial Day and the friends would come to his lake house on Fourth of July, and on Labor Day it was Broken Bow Lake. He also took trips with them to a condo in Keystone, CO., where his parents skied. Nicholas went to ski school day care and loved it, new people to meet, his sister did not love it so much. He also took a trip to the Grand Canyon, where he rode on dad’s shoulders everywhere he went. He even went on a horse ride through the mountain forest. Nicholas was always up for an adventure including tubing in the Guadalupe River and later riding in a raft with his sister along with his Mom paddling trying to keep up with the ones in kayaks. He did this at least once a summer for several years with his Uncle Dne, Aunt Bunnye, Uncle Jay, Aunt Julie, cousins (Josh, Brianna, Haley), sometimes Granddaddy too.
Nicholas fell in love with fast rides. His Aunt Julie took him on his first rollercoaster at the rodeo when he was around 4 and that started his love for fast rides. When he obtained the height to be able to ride all the rides at Disney World, the trips to Disney began. He loved all the rides, but the roller coasters the most. Space mountain was his favorite, a roller coaster in pitch black conditions. As he grew older his strength depleted to the point, he could not ride the roller coasters anymore, but he still loved everything else, the shows, the rides he could ride, and the people. He loved life and people.
He got a Make a Wish, where he and his family went to Rome Italy for seven days. He saw all the sites through guided tours; The Pantheon, the Sixteenth Chapel, the Vatican, the Spanish Steps, the Roman Ruins, Trevi Fountain, etc. etc. He loved the people and the food.
With all his travels and adventures, Nicholas loved good food. He loved all types of food, especially eating at Lupe Tortilla’s.
Nicholas went to Fiest Elementary School for preschool. He started kindergarten at Lowery Elementary School at five years old and graduated 5th grade, he was on to Aragon Middle School for three years next. Nicholas graduated from Langham Creek High School in 2011, after that then he began college at Lone Star Junior College. He was studying web design. As his learning progressed, so did his gaming systems and computers. The only competition he ever had was his best friend, Steven, who also had Duchenne. Nicholas loved games and the computer. He would read up on games and methods to improve his skills. The more he delved into the internet the more he learned about the rest of the world, but nothing changed his view of people and food. He was caring, compassionate, and loved by all that knew him, and he returned that love.
Nicholas was as healthy and happy as a diagnosed Duchenne patient could be up until he went to the Lord on April 16th, 2021. His family is consoled by the knowledge that his MiMi Johnson was there to lead his way along with his Nana Chandler, MaMa Bolton, cousin Shari and her son Michael, and his best friend Steven.
Loved ones that will miss Nicholas until they meet again are his dad David L. Johnson; his mom Valerie K Johnson; his sister Ashely D. Farmer and her husband David M. Farmer; his grandfather Robert L. Johnson; his grandparents Julia Leffingwell and Robert R. Leffingwell; his Aunt Julie Edwards; his Aunt Pamela Edwards and Uncle Darrell Edwards; his Aunt Mary Johnson and Uncle Michael Johnson; Uncle Jay Edwards; his cousins Haley Edwards; Jamie Pennywell and her husband Terrence Pennywell along with their children Brylan Pennywell and Talayeh Pennywell; Josh Edwards; Brianna Doucet and her son Douglas Doucet.
Visitation will take place on Wednesday April 21, 2021 from 3:00 PM-4:00 PM for family and 4:00-6:00 PM for friends. The Funeral Service will be on Thursday April 22, 2021 starting at 2:00PM. The burial will take place in Kilgore, Texas at Kilgore Cemetery 200 Memorial Street at 1:00 PM.
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