Amanda

October 7, 2007

A year ago this month, Amanda moved in to Horizons Residential Care Center. It’s hard to believe a year has passed! We continue to feel very fortunate to have a facility of this caliber so close to home. Just tonight we attended a dinner at Horizons and were able to meet other parents who have children there, as well as several board members. This event confirmed that there are many good people involved with making sure that Amanda and the other residents are well-cared for: both directly and behind the scenes.

We met the new director of Horizons, David Adams. He is working hard to increase funding to make improvements to the facility and purchase new equipment. Two of Amanda’s cousins, Katie and Audrey, did their part to raise money this summer. They had a lemonade stand and were able to contribute $150 to the cause! Nice job, girls!

Amanda had quite a few visits from family this summer. Dad’s sister, Cindy, and her family came down from Ohio; Mom’s sister, Jeannie, and her daughter, Tianna, came in from Louisiana; and Cynthia’s mother and father visited from Florida. Everyone enjoyed seeing Amanda and also going to Horizons to see where Amanda now lives.

Amanda and her mother regularly go to church on Sunday’s. Amanda has been a part of the eighth grade girls’ Sunday School class this year—these girls have really taken Amanda under their wing (and into their hearts). The class is moving on to high school and they celebrated the end of their middle school group with a trip to Horizons to sing for Amanda and the other residents. What terrific girls…and wonderful Sunday School teachers, too!

What a hot summer this was! Well, we found a way to take advantage of the heat! One of her dad’s neighbors, Eugenia Guyer, has a lovely swimming pool in her backyard and Amanda was able to go swimming, twice! We still had to put a wet suit on Amanda, so she wouldn’t be too cold in the water. It seemed like it really felt good to her, to be able to let her body float and to be able to stand upright so easily. Amanda drifted around the pool on a raft and then she relaxed in chaise lounge in the warm sunshine. You’re pretty cool, Amanda! Thank you, Eugenia!

Speaking of cool, Amanda is now a bona-fide teenage girl—she turned fifteen this September! We  celebrated her birthday, and her brother Zach’s sixteenth, with a quiet evening at home. Amanda got a cute new fleece jacket and some beautiful earrings. Her father was also able to finish customizing her special stroller, which had become too small for Amanda to ride in comfortably. So, now we are ready for some autumn strolls—as soon as some (cool) autumn weather arrives!

Letter to Amanda from Mom 

March 12, 2007

Today marks three years since that fateful day when Amanda fell off the roof and our lives took on a new meaning. There are daily temptations to succumb to discouragement, disappointment and depression, the forerunners of bitterness, as we remember the vibrant, intelligent, fun loving and artsy young lady Amanda was before her accident. I used to think that losing a child would be the most difficult circumstance a parent could ever endure, but having a child survive a traumatic brain injury, suspended indefinitely somewhere between life and death, is a deeper, much longer valley.

It has been over five months since Amanda moved to Horizons and she is doing very well. The staff at Horizons does a wonderful job tending to her daily needs and they do it with warmth and friendliness. It is apparent that the staff dotes on her and that Amanda enjoys them as well.

Amanda’s bedroom at Horizons is bright and cheery—done up in bright colors, with cards and pictures adorning her wall. The eighth-grade girls’ Sunday school class at Calvary Baptist Church has been decorating the door to her room, in step with the seasons. The Sunday school class also spent an evening during the Christmas holiday season singing carols for Amanda and all the children at Horizons. They did a splendid job and it was a magical night.

We are finally settling into the new groove and establishing routines. Typically, Amanda comes home to her dad’s house for overnight visits, two to three times a month. Mom goes out to Horizons and spends time with Amanda there, several times a week. Plus, Amanda and Mom have been going to Sunday school on a regular basis and they both enjoy the experience. See a special note to Amanda from mom: Letter to Amanda   

March is Brain Injury Awareness Month.

The Brain Injury Association of NC (BIANC) has scheduled a “Walk and Roll-athon” on Saturday morning, March 31^st at Kernersville’s Triad Park. Their mission is to create a better future for children, adolescents, and adults who survive brain injury by providing prevention, education, research, and advocacy. We are planning to push Amanda in her wheelchair and would love to have a group to join in and lend support. If interested, go to www.bianc.net and click on the TRIAD-AREA link and it will take you through the registration process.

"One hundred years from now, it will not matter what my bank account was, how big my house was, or what kind of car I drove. But the world may be a little better, because I was important in the life of a child." 

-Dr. Forest E. Witcraft (1894 - 1967), was a scholar and a teacher

Happy Horizons

Almost a month has passed since Amanda moved in to Horizons Residential Care Center. She seems to be adjusting well.

Amanda shares a room with another girl named Christine, who is very close in age. We are in the process of fixing up the girls’ room, to make it colorful and homey. We will have bulletin boards—so please send cards, photos, and drawings! If you send photos, a brief caption written on the back would be nice—that way Amanda’s helpers can share the photos with Amanda and be able to talk to her about them. The eighth-grade girls’ Sunday school class at Calvary Baptist made a wonderful fall banner to decorate the door to Amanda and Christine’s room.

Amanda Mohler

c/o Horizons Residential Care Center

100 Horizons Lane

Rural Hall, NC 27045

Amanda resides in the “B-wing” with 9 other children. Most of them share a room with one other child. Each morning, they are all wheeled down to another wing, where the classrooms are located. They stay here for most of the day, doing educational activities that are tailored to their individual needs. This is when Amanda will spend time in the stander and experiment with various communication devices. They do adaptive PE, art projects, and music activities and occasionally take field trips.

Around four o’clock in the afternoon, the children are moved into the den. Here they stretch out on different beds and mats and relax through the evening. Then later they are moved to their bedrooms and settled in for the night.

Mom and Dad and Cynthia have been taking turns going out to visit Amanda. Amanda’s cousins visited from Washington, DC a few weeks ago and we picked up Amanda and all went to see the movie “Open Season” together. Amanda really seemed to enjoy going to the movie. She came home for a short visit that weekend, too.

  Horizons just had their Halloween Festival. Mom took Amanda through the Haunted House and they did the Cake Walk and won a yummy chocolate cake! Amanda’s face was painted like a kitty and she had kitty ears on—she looked awfully cute! The folks at Horizon’s went all out for the festival and did a great job.

Amanda is home with us, as we write this update. This has been a very emotional time for her family. The release from the intensive responsibility and relentless routine involved with keeping Amanda at home has been refreshing and liberating. At the same time, however, it has been hard to enjoy this newfound freedom with the realization that Amanda is not with us. We have entered a new kind of mourning period—as we begin to comprehend the permanence of Amanda’s condition. Despite the sadness we have felt, we know we are truly blessed. We are grateful that a facility of high caliber, like Horizons, is so close to home. We are thankful for the friends and family who have continued to visit Amanda or send cards. And we are very appreciative of our friends, neighbors, and families who have supported us and helped us come to terms with this decision. Thank you. Everyone!

“And behold, I am with thee, and will keep thee in all places whither thou goest, and will bring thee again into this land; for I will not leave thee, until I have done that which I have spoken to thee of.”

--Genesis 28:15

A Smile on the Horizon

September 28, 2006

It’s been 2-½ years since Amanda’s accident. Looking back, and remembering Amanda as the active, ambitious, and fun-loving daughter that she was, is a bittersweet pastime, but assuredly more pleasant these days than the uncertainty of looking ahead to the commitment of her long-term care. Just two-and-a-half years ago Amanda was enjoying a new soccer season, excited about being on the speed skating team, and hanging out with her friends  in the fifth grade at Calvary Baptist Day School. Four summers ago, she was getting autographs from every Disney character she could find and loving the fast rides at Disney World. Five summers ago, she was enjoying riding the rails to various northern Italian places like Vernoa, Venezia and Lago Di Garda. Ciao ragazza bella!

Amanda loved life, people, and activity, and I’m glad that her first 11 years were full of adventure. She radiated joy, exuberance, and compassion. I hope that she, too, is able to reflect back on some of these many pleasant memories.

The past few months have been rather grueling, to say the least. Amanda’s spinal surgery in July went very well. Shortly afterwards, she developed gastrointestinal problems and other complications that landed her back in the hospital several times and then a whole slew of doctor appointments followed—wearing us all to the brink of exhaustion.

On September 18th, Amanda celebrated her fourteenth birthday. She shared her birthday party with her older brother Zach, who turned 15 the day before her birthday. Zach is now a freshman at Mount Tabor and is doing well in school. He is very supportive of all that we have going on.

And a new chapter in Amanda’s story is beginning! Next week, Amanda will be moved to Horizons (a residential care center), a wonderful facility in Rural Hall, about 15 minutes away from Winston-Salem that cares for children with severe disabilities. This was a very difficult decision to make; however, we all feel that this is the best place for Amanda at this time. She will benefit from around-the-clock nursing staff. Along with a beautiful setting, Horizons has both inside and outside facilities for physical activities including a gymnasium and a specialized playground. Amanda will be able to attend school on site at Horizons where they will focus on her special needs. She will have a roommate and other children with similar needs to interact with daily. We will be able to visit Amanda at any time and can bring her home for the day, or overnight stays, whenever we like.

Please pray for Amanda, to give her comfort, during this time of change. This will be an adjustment for the entire family. As Amanda gets settled in, we will share more information regarding how friends can visit and provide support. I feel confident that the folks at Horizon’s will fall in love with Amanda. Her warm spirit and wonderful smile captivates everyone she meets!

Monday, July 17, 2006

Since the last update, Amanda’s family has been hard at work, finishing up the basement project. It is almost complete! Soon, Amanda will be able to roll right in to the shower. Along with the new bathroom, the main room downstairs has been fixed up so Amanda can stay there when needed. It will also comfortably accommodate family when they visit from out of town. This is important because Amanda and her family can’t easily travel to visit relatives anymore.

Mid-April brought a new member to Amanda’s family-a dog! “Shadow” came from a situation where his family could no longer keep him and he needed a new home. He is a mixed breed, about five years old, and the sweetest, mellowest dog around! Luckily, “Tiger,” the cat, agrees!

Amanda has been relaxing over the summer break (thankfully not having to catch the bus at 6:40 am!). However, hanging around the house all day can get a little boring. Thank goodness for visitors! Along with friends, neighbors, and family, Amanda has had some special visitors from Calvary Baptist Church. Suzanne Passero, and her therapy dog, George, have stopped by recently. They have visited Amanda before and it is always nice to see them. George is a beautiful black Lab and he proudly struts his stuff! Jamie Castlebury also came to see Amanda this summer. Jamie comes by regularly and reads special stories to Amanda-which Amanda thoroughly enjoys!

The big news of late is Amanda’s upcoming surgery. She is scheduled to have spinal fusion surgery on Monday, July 24th. Due to her brain injury and the ensuing neuromuscular tone issues, Amanda has developed scoliosis-the muscles have pulled at her spine so fiercely that it has become curved in an unhealthy way. The surgery will involve attaching a straight rod to each side of her spine. Bone will then be grafted from her hips and fused to the spine, and this bone will eventually grow between her vertebrae. The rods will hold the spine straight while the bone grows in. This surgery should keep Amanda’s spine curvature from worsening and possibly jeopardizing her internal organs and it will definitely improve her posture and her ability to sit correctly in her wheelchair.

Amanda has proven over and over that she possesses a resilient spirit and we have every hope that she will come through this surgery with flying colors. Please keep Amanda and her family in your prayers as she undergoes this serious operation and the following recuperation. She will be in the hospital for approximately one week and then return home to continue healing.

“I can do all things through Christ which strengthened me.” --Philippians 4:13