Days With Liz
One Christmas, I received a gift with a card from the source saying it was inspired by her child who died unexpectedly while undergoing surgery at the age of sixteen. She had endured seven other surgeries of various types. Going into the last surgery, her parents thought everything will be okay. But that wasn’t to be. The autopsy report stated that she had suffered a traumatic rapture of one of the cerebral arteries. Because of that she had a moderate amount of blood throughout a portion of her brain. She went into cardiac arrest and could not be saved. Her parents came up with something to print for her plaque to be hung next to the picture that celebrate her life. It took them a year to come up with the following:
We celebrate Liz
As an accomplished athlete in North Carolina
her unique zest for living
won the hearts of many
from all walks of life.
May we all learn from Liz
by seeing that
the color of ones skin or varying abilities
are not barriers between us,
but just differences,
and those once perceived obstacles
can be overcome.
Through our hearts,
we can connect with others
by finding things in common,
no matter who we are.
Mary was the youngest of three and did not have much experience with children. Her husband Rob was the oldest of five. They were married and neither of them was sure about having a child. Mary did know that if they did have a child it would happen after they were able to buy a house. She didn’t want to be stuck raising her child in an apartment. Two years later, after they were married, they bought their first house with the help of Rob’s parents and one year later, they had their daughter Liz.
Mary’s pregnancy was good. She read books on how children develop. By the time Liz came Mary thought she was prepared. She was wrong. She remembered the day after Liz was born and she was resting in bed in the hospital room, a doctor came in and introduced himself as a Pediatric doctor that had just completed examining Liz. He said Liz was normal except for one small thing. He thought that Liz might have dislocated hips and wanted permission to contact an Orthopedic doctor to see if he agreed. He said not to worry that all it meant was that Liz had double-jointed hips. With that, Mary told him to contact the other doctor and thanked him for his help. It was at that point that Mary knew (her instinct told her) this was not good. Liz was not perfect and Mary cried.
A day or two later, Rob and Mary were having dinner together in a room with other new parents. The hospital provided this special meal for new parents. While they were eating, a man came up to them and said he was sorry to interrupt them but this was the only time he was able to get up with them before Liz and Mary were released from the hospital. He said he was an orthopedic surgeon and had examined Liz. He said that the pediatrician was correct. Liz hips was dislocated. He wanted them to pick up a harness that would be fitted by him to place Liz hips in a neutral position. That position was hiking up the legs in a frog like way. After Liz and Mary were released the following day and picked up by Rob, they drove to the address the orthopedic surgeon gave them and picked up the Pavlic Harness. They then drove to another hospital where the doctor was performing another surgery on someone else. He left the operating room and met with them and fitted the harness on Liz. They were told to call his office and made an appointment and bring Liz a few days later for a more thorough examination. From there, Mary had to buy some pads for all the bleeding she was having. She remembered feeling as though she was going to pass out while standing in line to pay the pads. By the time they got home with Liz for the first time, Mary and Liz fell asleep while sitting on the chair.
Liz was in the hospital when she was three and a half months old. Her hips were still dislocated, so she was put in traction for 5 weeks, her first Christmas. Traction was used to gently stretch Liz muscles so that the doctor would be able to put the bone back into hip socket. After traction, Liz was put in a cast for a total of 5 months. During that time, she had 3 new casts because of her continued growth. The purpose of the cast was to stabilize Liz hip after reduction. Two days after the 4th of July, Liz had the final cast removed. She was placed in splint for 2 to 3 months. The splint was a thin piece of flexible material that restrain, support, or immobilize part of the body while healing takes place. Liz splint was taken off one day after Mary’s 27th birthday.
Liz has Epilepsy. They discovered that fact in August, 1988. She had 5 minute (staring-throwing up) seizure while at a summer tutor’s house. It was a Petit Mal seizure. She’s had two more seizures like that at school but they think she’s having a lot of smaller Petit Mal seizures that are impossible to see. The doctor thinks most of them occurred in her sleep. (Could be the reason for her learning disorder). Her neurologist had run a gambit of tests- MRI, EEG, and CT Scan. They’d learned some new things, but found some new questions they can’t find the answers. Liz ventricles (fluid-filled spaces in the brain), were larger than normal. The doctor didn’t know why, or what it meant-but he wanted to have more tests done, periodically, to keep an eye on it. In the meantime, they’re trying to keep the seizures under control with medications.
Liz was in a newly created Language Impaired classroom. It has 2 other kids in it with room for 5 more. She had Learning Disability (LD) help four times a week in school along with being mainstreamed with a 1st grade class for Art, PE, Music, Library and Lunch. She made great progress over the 1988 summer. Thanks to all her Occupational Therapy, Speech, and LD tutoring (all provided by private women-outside the school). Rob and Mary continued Occupational Therapy and Learning Disability tutoring on their own- outside the school system.
August 17, 1989 Liz turned 8 years old and in an EMH (Educably Handicapped) classroom. Her teacher was wonderful. The school was about 9 miles from their house and they had a taxi picking Liz up. Liz started to read “Dick and Jane” type of books. Besides that big accomplishments, Liz also talked on the phone. It may not seemed like a big deal to someone else, but it was for Rob and Mary and Grandma’s and Grandpa’s. Most importantly, Liz could swallow pills. With her having to take medicine everyday for Epilepsy, it sure made it easier to administer pills instead of liquid. They’ve got her on a new medicine for the seizures and so far this drug was much better. she was having only one seizure a week or hardly any. LIz took gymnastics and horseback riding for kids with disabilities. It was wonderful program and Liz loved it.
Liz had a new drug for her high anxiety. It was an antidepressant. She also received treatment for Attention Deficit Hyperactivity Disorders, ADHD or ADD. It helped her a lot at school and at home. Liz was moved from her Educable Mentally Handicapped (EMH) class to her home school, Pearsontown. It was nice having her close to home. She had the same teacher, Tracy Currier. Miss Tracy was an outstanding teacher, and had become a good friend to Mary. Liz loved school. She did some Math and Reading at the 1st grade level. Outside of school, Mary kept Liz busy with gymnastics, arts (clay and drawing), Occupational Therapy (OT), Speech Therapy and horse back riding of which Liz took two 4th places and one 5th place, in the North Carolina State Special Olympics. Liz was one of the youngest participants. That was quite an experience watching the horse show. Rob and Mary were very proud of Liz that day. She also participated in Camp Civitan. It was a summer day camp program for people with disabilities. Liz was one of the highest functioning and she really enjoyed it. They had a good staff of paid and volunteer workers that keep the kids busy all day.
Rob and Mary had a scare in January and February of 1990 when Liz’s hair started to fall out. She lost more than half of her hair from her new medicine for seizures. They didn’t want to stop the drug because it had almost stopped her seizures completely. The medical information on this drug said the hair loss should only be temporary. They continued the medicine and Liz hair grew back…curly! It was beautiful. She had about 4 inches of hair growth.
Liz’s last known seizure was on March 30, 1993. Her seizure symptoms were:
-giving no response or a confused response and moving about aimlessly
-making lip-smacking or chewing motions with her mouth
-will usually stare up to the sky and starts turning to her right
-her eyes will roll back
-might turn a light shade of blue
-will fall over and have jerking motions
Liz had some more tests done. MRI (Magnetic Resonance Imaging) for one of her head and entire back. The results of that test told them she has mild hydrocephalus and a tethered spinal cord. Her spinal cord was snagged, and it needed surgery to unsnag it. In order to do that, Liz must first have a shunt put in. A shunt is a tube that will be placed in one of her brain ventricles and runs down the neck under the skin and into the chest cavity. That surgery took place on January 3, 1991. Six weeks later the surgery to repair the tethered cord followed. Both surgeries were done at Duke Hospital. She took longer to recover from the shunt surgery than the tethered cord surgery. That showed there was a fair amount of pressure in her ventricles and the shunt was a good thing to have done. Liz also had some psychology evaluations done on October of 1991 to obtain baseline measurements “of her pre-shunt levels of intellectual, academic and behavioral functioning”. It was followed up with a “post-shunt functioning” in November of 1992. The results of the 1991 test was no surprise. Liz functioned in the mild to moderate range of mental retardation, with perceptual organizational skills being better developed than verbal comprehension skills. The 1992 testing had proven to be somewhat of a surprise. The result had shown a decline in abstract verbal reasoning and non-verbal spatial/analytic reasoning. The experts were not sure why.
Liz had a School Health Emergency Care Plan form on file. She had mild hydrocephalus and was treated in January of 1992 and retreated in June of 1996 by surgically implanting a shunt. That was a device to divert excess fluid from the brain. Her shunt valve unit was under the skin on the right lower back side of her head. The drainage catheter runs under the skin behind the back right ear and then down the right front of her chest and then drains into the abdominal cavity. If any of the following things should occur, the parents or, her neurosurgeon should be notified as soon as possible:
-if Liz were to fall and or get hit on the right back side of her head
-if Liz were to become injured (any where on her body) in which she may have a fair amount of bleeding (antibiotics would need to be administered)
-if Liz complain of headaches, nausea, vomiting, blurred vision, sleepiness (this could indicate that her shunt is malfunctioning)
North Carolina had the Special Olympics end of May 1992. Liz’s competition was in gymnastics. She had fun and brought home some medals. The local newspaper had Liz’s picture and an article with an interview with Rob and Mary, on the front page of the sports section. Eckart Pharmacy (around the state) had picture of Liz on the box for donation to NC Special Olympics. In the fall she competed in soccer and horseback riding. Soccer was the most fun to watch. Liz was awful but she enjoyed it and everybody laught a lot. The last game of the soccer competition Liz scored the winning goal for the other team! The other team ended up taking 3rd place and Liz team 4th. Out of the sports that were available for Liz to compete in, she excelled the most in horseback riding. It had proven to be her strongest sport. It also was very good for her back muscles. She had a bad posture and the riding was the only thing that forced her to sit up tall. Mary never realized how important Special Olympics were until Liz joined. She always thought it was a way to let the “retarded people” have one day to shine and she resented that. But during the competition, Mary finally found that it was not a day to shine. It was about building relationships with peers and coaches and taking pride in what you’re able to accomplish at the end of the season. It’s about trying and winning and loosing and most of all, having fun. In all the years they had Liz, everything had always been so serious. Special Olympics had given them an opportunity to laugh and finally had some pride in Liz, and all her specialness.
In June 1992 Liz went to an Easter Seals sponsored overnight summer camp. It was just north of Winston Salem and a couple of hours from their home. Liz stayed there for a week. It was hard of Liz to be away but she had a good time. It was a nice break for Rob and Mary. Liz was able to go to an extra special camp, sponsored and paid for by Duke Hospital. That was a one-week camp as well, to any children that have chronic illness like, diabetes or sickle cell anemia, and have been followed by a doctor from Duke Hospital. Liz loved that camp best. August 1992, they were in Milwaukee for a week and a few days. They drove and stopped in Cleveland on the way back home. It was nice for them to see everyone.
The summer of 1993 proved to have been too much for Liz. She had 3 (overnight) camps. They were all for one week each. The first one was a new camp for children with epilepsy. She liked that camp best. Every building was air conditioned. Liz doesn’t do well in extreme heat and this summer she did get extremely hot. The last camp was the Duke Hospital sponsored camp. She enjoyed that camp because the volunteer staff (employees of Duke Hospital) were very positive and made everything fun. Again, the heat proved to be too much for Liz. She was sick thru most of August. They had problem with Liz hair falling out again. Only this time it was a fungus. They had to put her on oral medications and a special shampoo. She lost a lot of hair. It grew again and looked much better.
Rob and Mary opted to place Liz in anther class room for the 1994 school year. It’s for trainable handicapped (THM) kids. They worked on life skills like how to wash and fold clothes and cook basic foods and make beds. They did work on some academics like math and reading. Liz learned how to count money and how to tell time. She enjoyed her new class and teacher. Liz was still in Lowes Grove Middle School for another year then high school. Her body started to mature and was getting close to Mary in height. She continued to go every summer to two summer camps. One is Easter Seals sponsored YMCA Camp Hanes and the other was an Epilepsy camp- Camp Carefree. Liz competed in swimming, soccer (individual skills), horse back riding, and bowling with Special Olympics l995. She loved to swim and had gotten quite good at it. Fall of ’95, Liz got a gold medal in soccer (the first gold she’s ever gotten). Liz was so cute standing on the platform receiving her 1st place medal. She was so excited and proud; smiling from ear to ear, arms lifted above her head. Everyone watching got a kick out of her enthusiasm. Rob and Mary bought Liz a special bike (three wheeler) for her 13th birthday. It’s wonderful. She never could get the hang of balancing on a two wheeler and she’s gotten too heavy for training wheels so they ordered the three wheeler bike. It was designed for the elderly and only made in Florida. Liz loved it because it has a great big basket in the back of the bike between the two rear wheels. She placed all of her dolls and stuffed animals in the basket and took them for a ride.
July 1994, Liz had a fast heart rate. They had tests done and saw several doctors. They concluded that it was because she was in medication for anxiety and that it was making her heart beat faster. They stopped those drugs. At this point, they had given up on trying to treat Liz’s anxiety with drugs. It was a battle trying to deal with her anxiety. Then liz had surgery on both of her feet in September. They aligned her heels to try and correct her severe pronation (flat feet). The bigger she’s gotten each year the more she would complain about walking any distances. Liz was in two casts and was not allowed to walk or stand after the surgery for six weeks. She was in the hospital for a day and at home for 2 weeks and then back to shool in a wheel chair. She got to ride on the bus that had a wheel chair lift. Liz liked that the best. Rob and Mary had to carry her up and down their front outdoor steps (there were six), carried her into the bathroom (the wheelchair didn’t fit through the door way), in and out of the car. Rob’s mom came and helped out a lot. She got Liz to do a lot on her own. It made Mary realized just how many obstacles there were and how you need to think things through before taking Liz and the chair anywhere. Something as simple as going to the grocery store- Mary could only get a few things with each visit because she couldn’t overload Liz’s lap. She wasn’t the best in steering the chair so Mary had to push her in the store and therefore she couldn’t use a shopping cart. At the time of surgery Liz weighed 105 lbs. Rob and Mary were amazed they never had any back problems during that lttle adventure. The doctor was pleased how Liz feet was healing but said she might need more surgery on the right foot in a year or so.
Outside of school and Special Olympics Liz didn’t have any friends to spend time with. That was the hardest thing for Mary to see. As a kid, she remembered spending time playing and dreaming with her closest friends, Liz didn’t have that. Every year, they went to the mall so Liz could see Santa Claus. She loved to sit on his lap and tell him what she wants and can’t wait to have a picture taken with him. While they waited in line with all the other small children, Rob and Mary always felt stupid standing there with their 5’3″ child. Liz believed in Santa so they didn’t stop this practice. Every year the people that work there made the waiting worth while. Whenever Mary went to pay for the picture of Liz and Santa they told her it’s free. Mary’s eyes started to well up with tears and all she could say was “Thank you so much”. Sometimes it’s nice to be special or at least recognized and given a break, every once in a while.
Mom Duke, or better known as Grandma Duke, had relocated in Durham. Her apartment was in a complex for seniors or adults with disabilities located on the north side of Durham. Rob and Mary lived on the south side and it can be hard sometimes to go back and forth. But they were glad she’s closer to them now. On the last day of August ’94 Mom Duke had to undergo another emergency double bypass surgery. She had just had a double bypass done only two and one half years earlier. This one was on 2 other arteries. The surgery was done in Charlotte, about 3 hours from Durham and it created a lot more stress for Mary and Tom(Mary’s younger brother that lives in Raleigh). Jane (Mary’s sister that lives in Milwaukee) came down and stayed with her Mom for about 2 months or so. Their Mom had a real hard time bouncing back emotionally after surgery. She was in and out of several hospitals for a few months until Tom and Mary talked her into moving in Durham, about 20 minutes from Rob and Mary’s. Mary got her hooked up with doctors at Duke Hospital. Mary’s so used answering questions about Liz and her ailments now she had to learn about her Mom’s problems.
The best part of having Mary’s Mom near was that she and Liz got to spend time together and Rob and Mary got a break. Liz loved sleeping over at the apartment. Liz had given grandma Duke and some of her new neighbors the title “all the girls”. They all went out on Saturday mornings for biscuits and eggs. Grandma Duke said Liz talks non-stop the entire time she was there. Most of the ladies (including grandma Duke) can’t hear or understand what Liz was saying and most of the time Liz didn’t know what she’s talking about either. So they all were confused and had a great time together.
Mary had gotten involved in Durham Public School Advisory Council for Exceptional Children (ACEC). Durham merged the city and county schools into one system and they just got a new Exceptional Ed Director. Mary thought being involved again she’ll be able to hear of anything new in the works and to point out where the trouble spots were and if something wasn’t working. She was still working part time at First Citizens Bank. She transferred to a much closer branch to her home in Research Triangle Park. The hours were good and the pay was great. She enjoyed going to work and not thinking about stuff at home. She tried to schedule Liz and her Mom’s doctor appointments during the hours she was not working.
This 1995, Liz was 14, Rob and Mary turned 40, they celebrated their 19 years of marriage and 10 years of living in Durham, North Carolina. They sold their old house and bought a new one. It had two-car garage. Their cars fitted in with room to spare. Rob had a work-bench in it and more. They were in a beautiful neighborhood. They’d been in the old house for ten years. It was hard to leave their good neighbors and friends but they were not very far from them so they often stop to visit.
January, 1966 started out OK, until the snow hit the 2nd week of the month. Schools closed and just about everythin else for a week and a half. It was fun though. It was the first winter in a long, long time that they were able to play and slide down the hills for about two weeks. At the end of January, Mary’s Mom had a stroke. She was in the hospital for 4 days and it affected the left side of her face. She recovered from that almost completely but has had several smaller strokes ever since. On October 22nd she had a bad enough stroke that landed her in Duke Hospital until they transferred her to a rehab center on November 1st. Her memory, trying to find the right words to come up with during a conversation and trouble with her balance while walking, were some of the difficulties she was experiencing. This had been a very hard year for Mary’s Mom as well as her sister Jane, brother Tom and Mary. Jane came down the beginning of October to help Tom and Mary find a safer sitting for their Mom. Their Mom was due to be released from rehab center just before Thanksgiving and Jane will leave to return to Milwaukee on Thanksgiving day.
Liz participated in a choral group called the Sun Shine Singers. It ran from January through May, made up of people with disabilities. She loved every minute of her singing class. The instructor and acompanist were wonderful. They had concert at the end of the session. Liz sang every song with a big smile, from ear to ear. She was proud of herself. Mary cried. It seemed those moments were very few but when they occur they sure were special. Liz also swam again with Special Olympics. She really loved that too. Mary’s only complaints was the kids only get to swim in 2 meets a year. There wasn’t enough proximity to compete with. It just didn’t seem fair that these kids didn’t get the same programs and experience that ‘normal’ kids get.
June, 1996 marked another milestone in Liz’ life. She graduated from middle school. Mary went to the graduation ceremony and cried. The tears weren’t joy but sadness. Liz was no longer a little girl. She had grown into an adult and not always accepted by society for her differences. The differences between Liz and her peers were so much greater and more noticeable now. The day after graduation, Liz was brought to the emergency room at Duke for severe headache and vomiting. She ended up having surgery on Sunday, June 9th. The doctor had to replace her shunt. It wasn’t working and her brain pressure was building up, causing headache and throwing up. After recovering from that, Liz went to her two summer camps. One was in June and the other in July. Both camps were wonderful for Liz. September marked Llz’s first year in high school. Liz had a need for surgery on her right foot to finish up what they couldn’t complete two years ago. Her surgery for that was done September 23rd (followed by a non-weight bearing cast for 6 weeks). When the cast was off, Liz walked on it and got around pretty well. Mary’s parents-in-law came down for a week to help out and to see their new house. They stayed in the room above the garage. It’s finished off as an extra bonus room complete with its own bathroom with a shower.
September 5th Hurricane Fran came through Durham, Raleigh and surrounding areas. They’d been in their new house for four weeks when Fran came through. They thought they’d lose everything. Well, they didn’t. They came through it fine. Mary’s brother and friends in Durham weren’t so lucky. Tom lost a lot of big old trees and some roof damage to his newly added addition. Luckily no one was hurt. The schools were closed for 6 days due to buses not being able to get through most streets because of downed power lines and trees.
The Sunday following the hurricane, Mary’s right eye started bothering her. She had part of her lower peripheral vision blocked. She thought it was just a big floater and it would go away. She waited until Tuesday, to finally had it checked out. Liz went with her (schools were closed). The doctors’ office had no power or phones. Mary was able to reached him through an answering service. He looked into her eye with a flashlight and saw her right eyes retina had detached. Mary completely fell apart. Liz at first didn’t say anything. Then asked what was wrong. The doctor told her that Mary was going to have a surgery to her eye. Liz came over and patted Mary on the back and said “Mom, it will be alright”. LIz was wonderful during most of Mary’s recovery. Mary had surgery the next day as an outpatient at Duke Eye Center. It took one and a half hours and Mary was awake through the whole thing. The doctor was unable to do laser surgery. Instead he used a Scleral buckle. That’s a flexible band placed around the eye to counteract the force pulling the retina out of place. He also had to drain the fluid out from under the detached portion of the retina and placed a glass bubble into the space inside the eye. That helped to push the retinal tear close against the back wall of the eye. That part was strange. Mary could see the bubble when her eye was closed. She was out of work for four weeks and unable to drive for two weeks. The bubble went away a week or so, after surgery. Her vision was back but her nearsightedness was twice as bad (because the buckle elongate the eyes). Now her new lens, on the right side, was quite thick. The bad news was, her left eye retina looks to be in worse shape than the right one. There wasn’t anything they can do until she started seeing signs like before, except not to wait 3 days before seeking help. Liz’s foot surgery was 2 weeks after Mary’s.
Liz started complaining of having headaches sometimes in August or September. Rob and Mary thought it was sinus related due to Liz’ constant swimming and weather temperature changes. In early October it seemed to bother Liz more so a doctor appointment was made to see a neurosurgeon. Liz had a CAT scan and they found that she had a cyst in her brain. Rob and Mary were told Liz would need to have further testing. Two weeks later the MRI was performed. It was discovered through that test Liz had pituitary tumor. One week later on November 14, 1997 Liz underwent what would be the last surgery of her life.
Liz loved watching 911 and all of its reruns. Mary remembered it after hearing news of Liz passing away during surgery. It seemed so strange that Liz would die that way. She thought Duke Hospital had every surgeon there working to save Liz. There were a lot of good people working at Duke Hospital and Mary didn’t think she would have had Liz anywhere else. It had taken Mary nearly 3 months to be able to write down and express her thoughts and experience and to place them down on paper. She wanted to take time to write to each person that came to their house and to the wake and funeral and sent cards, flowers, plants and gifts. The list (over 300) was so long that Rob and Mary could not have done it individually. The first thought that entered their minds was to say that Liz touched so many lives and that so many lives touched Liz and thereby touching theirs. The amount of outpouring love they’d received, had been incredibly helpful and deserving of a huge Thank you from them and proved to be a fitting tribute to Liz.
Rob and Mary remembered Liz for her innocence, her love of life, her laughters, her talking, her anxiety and her stubbornness. They continued the never ending battle to simply go and find a new direction and purpose since Liz was born into eternal life. They learned that all life was a gift.
Jim and Lynette (Mary’s brother and sister-in-law) purchased a “Lion King” sericel that has Nala and Simba pictured standing together. Liz loved Nala so Jim and Lynette went to great lengths to find this picture. The Sericel had been donated to Duke Hospital in honor of Liz to be hung in the Pediatric Wing.
Liz J. Wurm, daughter of Rob and Mary had lived a joyful life. Her 16 years with her loving parents were truly spent realizing her full potential, supporting and lovingher beyond measure. She was born to manifest God’s glory. Rob and Mary let their light shine on Liz and in doing so Liz’ light shone to everyone, inspiring parents and kids alike.
Liz mother’s best friend is also named Mary. She was very close to Liz and treated her like a daughter and a sister to her son Nick. Liz and Nick went to outings together, they were in school together and went to Saturday ARC respite days together. Liz loved Nick and always watched after him when they were together. She road his bus and always helped him sit down, took his book bag and made sure he was okay. She watched after him in class too. She was a mother hen. Always wanting to help out where ever she could.
Liz was very outspoken. One time in school, and Nick were in the same class, her teacher wanted everyone to say Mr. and Mrs., Liz had always called her mother’s best friend Mary, the teacher reprimanded her for calling her that and asked her what she was to call Mary. Liz looked around and saw an apple sitting on the desk and said, “Mrs. Apple.” She would not call Mary, Mrs. Smith because she didn’t know Mary by that name. Wasn’t that wonderful to be likened to an apple? That’s why Liz is missed daily.