Hi, Back
2009 when I graduated high school I wrote a booklet titled “Me and A-T” here is
what I wrote:
Imagine the grace,
agility, strength, skill, and dedication of a ballerina, gymnast, or figure
skater. These were my ambitions once, my hopes and plans, my desires, my
passions, my dreams—until a very rare disease took control of my body and
robbed me of the abilities I needed to pursue my agenda.
I now know I will never
have those talents like I hoped for then, but my dreams are not dead. I hold
them in my heart and wait for the day I will dance before the throne of God...
I was born in Pasadena,
California, on July 1, 1991. I remember our home there—the grape vines in the
back yard, the summer heat, the playhouse, and my swing.
My dad was the Associate
Pastor at the church we were attending. My parents are Christians. They believe
Jesus was sent down from His throne in heaven by God His Father to die a
horrible death on the cross in our place. He did this so that we might live
through Him. This happened according to the will of God. We are all sinners
condemned to die. But through Jesus’ death and resurrection, we are given
forgiveness and eternal life.
I was raised in this
atmosphere. My mom said that I asked the Lord Jesus to be my Savior when I was
only 3 years old. I am sure I didn’t understand it all then. I just thought
receiving Jesus was what I needed to do in order to live and not die. I really
had no idea what I was getting into.
Now I have come to see my
faith in Jesus as a way of life. There have been times when I felt like I
needed to recommit my self to Christ. As I did, He placed in my heart a sense
of assurance and peace because I know I am His child and I belong to Him.
In 1995, my dad got a
phone call from my Grandpa who was also a pastor of a church in Gilroy. He
asked my dad to move north and plant a church in the nearby town of Hollister.
Dad gladly accepted and right when I turned four we moved to our new home.
I was very involved in my
church. It was expected of me as the pastor’s youngest daughter. I made many
friends that I hold dear to this day. In fact I knew no social life outside my
church.
I took lots of dance and
piano lessons. I wanted to be a famous ballerina when I grew up.
To me life seemed to be
going smoothly until I was 8 years old. My parents, though, were convinced
something wasn’t right. I always had difficulty balancing; they hoped I would
grow out of it, but I was steadily getting worse.
I started having trouble
with school more than ever. I was unable to remember facts I had already
learned. I often staggered as if I were drunk. Something was desperately wrong.
After numerous doctor
visits and blood tests we learned that I had a disease called A-T. It is a rare
but deadly disease which has no cure. I was in tears
when I found out; my dreams of dancing were darkened—but I had the love of God,
family and friends. Who could ask for more?
Not long after my
diagnosis my family and I headed for Johns-Hopkins Medical Clinic in Baltimore,
Maryland, to find out more about A-T. While we were at the hospital we
discovered a number of problems attached to this disease. For example, I
aspirate liquids when I drink. I need larger prints to help me read. I need a
special keyboard to help me type and a walker to help me walk—and now a
wheelchair.
Why me? I don‘t know all
the answers, but this I do know: it was God’s will. He planned it.
“For I know the plans I have for you, declares the LORD,
plans for welfare and not for evil, to give you a future and a hope.” Jeremiah
29:1
He wanted this to happen for His own
purposes. I love Him and trust Him.
“And we know that for those who love God all things work
together for good, for those who are called according to His purpose.” Romans
8:28
He has proven His love for me. I have peace
of heart and of mind knowing these things to be true. I know because He has
shown me the truth through His word.
God is not unfair. He’s
compassionate and merciful and full of grace. He gives in abundance. If He were
“fair” all mankind would deserve to be destroyed because of sin.
“For all have sinned and fall short of the glory of God.” Romans
3:23
“For the wages of sin is death, but the free gift of God
is eternal life in Christ Jesus our Lord.” Romans 6:23
After we were finally
done with visiting Johns Hopkins, we went to Washington D.C. We got a tour of
the capital from our congressman. We saw the White House—I even rode in the
President’s private elevator because my wheelchair couldn’t go up the stairs!—we
saw the Lincoln Memorial, the Washington Monument, and more. Then we drove to
Philadelphia and saw Independence Hall, The Declaration of Independence, and
the Liberty Bell.
After all the bad news
about my disease, our fun trip to D.C. and Philadelphia was a welcome relief.
December 1st came
and brought joyful tidings in a new way. We received a special offer for all
elderly and disabled—10% off Christmas shopping at Target. The eighth grade
class at Hollister’s Southside school would help customers shop and wrap their
gifts. They even had a bell choir to entertain the shoppers. When my Dad and I
went that day, the class practically adopted me.
We were invited to attend
their Christmas play dress rehearsal. We enjoyed the show, and afterwards, we
went to their class room with them. They asked about my disease and wondered
how I could be so happy in my circumstances. My dad shared with them how I knew
I was saved—how by God’s grace I will live forever. In His heavenly kingdom I
will worship Him in a new and perfect body.
That
same December I had surgery that saved my life. I had a feeding tube installed
because I was so malnourished. The doctors had said I was a “failure to
thrive.” The surgery gave me a way to have liquids and nutrients without
swallowing.
It has lengthened my
life—but I am still going to die soon. I know that. I don’t look forward to
death, but I am looking forward to heaven with all my heart.
We were at the church in
Hollister for years until the day my dad resigned as pastor. He found a job as
a music Teacher at the high school in Wheatland, California.
Only God knows how hard
that was for us. I had to move during my senior year of high school from the
town in which I was raised. It was hard leaving my friends, and it has been
just as hard finding new friends in my new town.
But I’ll stay where the
Lord has put me. Who knows what will happen?
The rest is still
unwritten.
A lot has happened since
then but the future’s still unwritten.
