Family
Stories - Getting
to Know Zoe - DS
Awareness Calendar
2007
Brochure (280
MB)
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
