FAMILY STORIES

Austin, Daniel Barnhill - Ethan Faulkner - Rebecca Mustin - Jeremy Donohue
(More Stories - Evan Neal Jefferies & Jack Rice)

We are Kathylyn, Bruce, Austin and Daniel Barnhill. Austin is 10 years old, Daniel is 7. Austin has been horseback riding for 7 years and now is a competitive rider. Austin loves to read and has been doing so since Kindergarten. Austin and Daniel attend Jefferson Elementary School where Austin is in 4th grade, Daniel is in 2nd. Austin is in a special ed class 1/2 the day and included in a typical 4th grade class the other 1/2. Austin is reading / comprehending on a 3rd grade level, sight reading at a higher level. Austin loves to play Baseball, ride his bike (a 2 wheeler !), color and play his guitar. Austin's biggest challenges are his ADHD and his speech delay. He is an inquisitive child and loves to learn. He is tall (tallest in his class) and slender, just like his Dad. Austin's only health challenge is his croup/respiratory infections, otherwise he just catches whatever his brother brings home. (He was diagnosed with 2 heart defects prenatally, but miraculously they were healed when he was born). We are blessed to be Austin and Daniel's parents. God never said it would be easy, but He did say that we'd never walk alone. Call us and let us tell you our "fortune cookie story", God does work in mysterious ways.

Kathylyn, Bruce, Austin and Daniel Barnhill 924-6434

Ethan Faulkner

Ethan Scott Faulkner graced us with his presence four days before his due date on May 25, 2001 at 1 :21 am after a three hour labor in Merced, California. He was a healthy 8 pounds and 20 1/2 inches. Ethan was born with tremendous amount of dark brown hair along with his daddy's hairline. He was just precious. Ethan is our first child, so after we were put into the postpartum room around 3am and once my husband, sister and parents had all gone home, all I could do was stare at him in disbelief that our son was actually here. He didn't cry at all, just made sucky motions with his tongue for the rest of the night. I asked the nurse if I should try to feed him and she told me that if he was hungry, he would cry. He slept all night whereas I didn't sleep a wink.

It was around 7 am when the nurses came and took him to the nursery for an assessment. They brought him back to me, no major problems. The pediatrician came into see me around 8am. She tells me that she has "concerns". She thinks that Ethan has characteristics of a Down Syndrome baby. My heart started racing, I thought it would pound right out my chest. I was alone and sleep deprived. I was privately devastated, but still held on to the slight chance that she was wrong. The entire day I stared at Ethan. Everyone told me to not worry, Ethan just had big beautiful almond shaped eyes like me. Fast forward to that evening when the nurses took him again to the nursery. They told me that he would be right back. He never came back to me in that room. About two hours after they took him, I was informed that Ethan's oxygen saturation was low, so he needed to stay under an oxygen hood. He was also acting like he was fighting an infection. He wouldn't eat. His tone was very low. And, to top it all off, they thought they heard a heart murmur.

We lived an hour away from the Valley Children's Hospital (VCH). When the pediatrician called VCH, we were then informed that an ambulance was on it's way to take Ethan to VCH. I had never felt such heartache. My son was supposed to come home with his Mommy and Daddy, in his own car seat, in his own car, to his own cradle ... instead, his first car ride was in an isolette with monitors stuck to him while in an ambulance. I, of course, initially blamed myself. What did I do? I had started giving in to the Pepsi cravings, was it the caffeine? My labor and delivery nurse, Claire, arrived for her shift and knew already what was going on. She immediately embraced me and told me that Ethan was special and given to us from God. Her kind words and compassion were something that I held onto dearly.

Luckily, my doctor was very understanding and authorized my release from the hospital early so I could be with my baby. While at VCH, Ethan had an echocardiogram done and prayerfully, his heart was fine! He had a couple of holes, but the cardiologist said that it was normal and that they would more than likely close up. We ended up only needing to stay in the NICU for four days. We had some issues with feeding initially, but once we found the preemie nipple, he was good to go and started packing on the baby rolls!

We immediately signed up for Early Intervention. Ethan seemed to be right on track for quite a while. It was hard for me to tell the difference between what he should be doing at what age since he was my first, plus the EIC people kept telling me that he was right where they expected him to be.

Fast forward to Summer 2003. Ethan was then 2. Still not walking. Still combat crawling to get around. I requested OT, PT & Speech therapy. It was like pulling teeth to get these services! Finally, I won and his new therapy began in September 2003. We visited our friends in North Carolina shortly before his therapy began.

It was during that visit that we were able to also visit and tour The Special Children's School in Winston-Salem. We fell in love with the school and even put in an application for Ethan to attend (even though we lived in CA!). We were told that they have a waiting list and it didn't hurt to apply. They saw the immediate need for Ethan to attend the school and before we knew it, we were packing our stuff up and moving to North Carolina! It was a very difficult and easy decision at the same time. Difficult because we dropped everything and left our family and friends. Easy because we felt that God had opened the door for Ethan to get the services he needs. Ethan's first day of school was November 17, 2003.

He loves school! I can not say enough kind words about the staff at TSCS! I highly recommend it. Between November and February, Ethan had been battling infection after infection, which was not normal for him. He has always been a healthy boy. I ended up taking Ethan to a follow up and asked if there was any sort of test we could do to see why he kept getting and staying sick. A finger stick blood test was done and within a couple of hours, I was taking Ethan to Brenner Children's Hospital to be tested for Leukemia. We were greeted by a lovely staff of nurses and doctors. Within an hour of being there, they had done a chest x-ray and bone marrow extraction. Later that night, Ethan was receiving his first blood transfusion and it was confirmed that Ethan does indeed have Acute Lymphoblastic Leukemia (ALL). Again, we have never felt such a helplessness. I can't fix him. I can't take the pain away. I can't take the cancer away...My heart actually broke when his hair started to fall out. His hair was one thing that he had always been known for, he was 2 years old and already had a standing appointment for haircuts!

Thanks to the wonderful Brenner's doctors, Ethan was officially in remission on March 15th! His treatment plan is slated for the next 2 1/2 years. He has had to spend some time in the hospital for infection and mouth sores, but he is getting back on track and back in school!

Ethan now has orthodics for his legs to help strengthen them. Hopefully, we win be getting him bearing weight and standing soon and then WALKING! We are so thrilled to have our happy son back. His smile and laughter will make anybody feel good. We have been blessed with Ethan being in our lives and we look forward to meeting other parents / family members in the Piedmont!
I know this is long, I just have a hard time scaling down when it comes to Ethan. He is my everything. Please feel tree to contact us with questions and/or comments.

Scott, Kristen & Ethan Faulkner & Shep the puppydog
336-922-0212

Rebecca Mustin

Rebecca Anne Mustin was born August 18, 1993. She is now 16 years old and attends Forsyth Vocational High School. She has had three open heart surgeries, one five days before her first birthday, a second at age 9 years, and the third at age 13 years, but is now doing well.

Rebecca has participated in Special Olympics each year and loves sports, especially swimming, T-Ball, bowling, and basketball. She loves music, especially country music. Her favorite singer is Garth Brooks. She also loves school. She is now reading and doing math. Another favorite of Rebecca's is to eat, especially eating out. She also loves to watch her TV shows, which are Full House, Seventh Heaven, Family Matters, and most of all the Atlanta Braves ball games.

She is now helping in the nursery at church with the toddlers. She is well liked by the children and also the other nursery workers.

As I think about all she is involved in and doing, I can't but remember what her doctor told me the day that she was born, "Mrs. Mustin, Rebecca will probably never be able to walk or talk." To us she is a very loving and special child.

Cheryl and Von Mustin
924-5595

Jeremy Donohue

It is hard to look back over the videos, the photo albums, and mementos in Jeremy's room and describe his life or ours since he was born 20 years ago. From 20 years of interactions with medical staff, school teachers, SSI, and estate planning, our story doesn't fit neatly into abbreviated sound bites.

Jeremy has always been friendly and athletic. This has allowed him social access as he has combated cognitive delays and speech difficulties caused by verbal apraxia. His inclusion in school, scouts, YMCA and martial arts training have also contributed to a normally outgoing and positive self concept. It has been further developed through work opportunities at LA Reynolds, Movie Gallery, and the Stevens Center. Special Olympic Competition in basketball, swimming, golf, horseback riding, and bowling have been good for him as well. Being the Football Flag Bearer for four years has certainly given him community visibility. His volunteer work at the public library, performances in three community theater performances, numerous talent shows, and full participation in the high school drama program have also made him a joyous role model for others.

Through it all, his family has been a central base of support. His karate coach and best friend is his sister, Lindsay. His volunteer mentor and IEP coordinator is his mother. His Dad is his golf partner. Everyone helps with driving and encouraging, interpreting and negotiating. An extension of our family has always been Jeremy's aide, a school-based assistant who melds all of this together in academic, social, and vocational skill development.

As Jeremy prepares to graduate from high school, increase work responsibilities, and conceivably live apart from his family - the transitions continue for all of us. To say it has been easy would not be true. But, at every difficult turn, we have been fortunate to have support and at every positive turn we have had thunderous applause for his achievements.

Hopefully your child will bring to your lives the joy Jeremy has brought to ours. You are being given the opportunity to look at the world with renewed vision - the road isn't always easy but the rewards are enormous.

We have been blessed, as has our community with the many gifts of Jeremy. From his relentless, stubborn will to express himself against huge disadvantages to his notorious hugs and sneak kisses, he has won the hearts of many of his peers and their families. He has a gentle, compassionate, and forgiving soul. More importantly, he has exhibited for all to see, that friends don't count chromosomes and communities need not be ignorant or afraid of people with disabilities. Rather, they can celebrate differences as part of life.

Please let us know if we can help in any way. Bill, Deborah, Lindsay, and Jeremy
336-922-0530