high school

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 1^st 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.