Sarah's Story

By Marylee Walden

When Sarah was a senior in high school, she was chosen for All State Orchestra. After a rigorous weekend of practice, the orchestra performed in Eugene, Oregon, at the Hult Center for the Performing Arts. There was my daughter’s name in the program, listed as Principal Second Violinist. A gentleman sitting next to me pointed out who his children were, and asked about mine. At that very moment, Sarah walked out onto the platform and took her seat. “That’s my girl,” I said to him. Right then, the Lord spoke directly to me, “I have great things planned for her.” That’s good, I thought! I didn’t know then how I would hang on to that promise.

Sarah had been having problems with her vision, and we thought that she needed new glasses. She already had ones that she used for driving, but it was obvious that her prescription wasn’t strong enough. But when Sarah came home from the ophthalmologist’s office, she had no new prescription. “He wants me to see a specialist,” she told us. “Whatever for?” we asked, perplexed. “Just ruling out a possible problem with her retinas,” he informed me when I called him.

We made the appointment for Friday, August 4, 2000. I went with Sarah to the appointment that morning. We were both in high spirits, ready for the weekend and making jokes. Neither of us had any idea that our lives were about to change.

Sarah was examined by the retinal specialist. He asked odd questions: about her sister (who is adopted), and then went on to ask about cousins, aunts, and uncles. Anybody that wears glasses? Anyone with eye diseases? Just glasses or contacts here and there, we answered, mystified. Then he asked Sarah if she had trouble seeing around her own home in the dark. No, she answered. It was getting stranger and stranger. Then, he broke the news that Sarah had a rare eye disease called Stargardt’s Macular Dystrophy. He explained very little about the disease itself other than to say she would be blind. Her vision right now, he said, was barely sufficient for driving. He mentioned guide dogs and canes. I said that I wasn’t sure that I was ready to accept the term “legal blindness,” and he responded that whether or not I was willing to accept it would not change her visual acuity. We were led to another room where Sarah underwent a test to confirm the diagnosis. Then the appointment was over and we were dismissed.

Somehow we found the car; and managed to drive across town back home again. I had called my husband on the cell phone while Sarah was having the test, and Dan met us at the door. We cried.

With shaking hands, I tapped out the words Stargardt’s Disease into an Internet search engine. I began to learn about this disease that would forever change all of us. Sarah would lose her central vision, but retain peripheral vision. It is like having a hole in your eye. While most of us adapt from darkness to bright light fairly quickly, it would take Sarah at least seven or eight minutes for her eyes to readjust. I learned it is a genetic disease that happens only rarely; both mother and father must have the exact same chromosomal defect. Even then the chances of offspring having this disease are just one in four. There is no cure, no treatment, no laser surgery. Low vision experts could help us, we were told. I hated the term “low vision.” “Oh Lord, where are you?” I cried. We were so afraid!

The next few weeks were a blur for all of us. We did see a low vision specialist who was immensely kind and helpful. Sarah got new glasses (several pairs) and a lot of encouragement. She continues to be seen by one of the top specialists in the country for Stargardt’s patients. While many even fly to Portland to see this particular specialist, we have only to drive a few miles. Thank you, Lord.

People at church were kind. Many called again and again just to see how we were doing. Just three weeks after the diagnosis, we packed the car and took Sarah to George Fox University where she was to start college. It’s never easy to pack your child off to college, but we had many new concerns. Sarah would need to find new ways to learn. Reading text would become more difficult. Reading music would become nearly impossible.

My spirits sank as we encountered each new hurdle. I asked the Lord again and again why this couldn’t have been me instead of her. I even checked into retinal transplants. I could give her mine, I thought. “Not possible", they told me. “Ridiculous idea,” Sarah said.

There have been times when I thought I could not handle this burden for one more minute. The Lord has very graciously given me exactly what I needed to hold on—every time. He has given Sarah grace and courage that amazes me. She says she’s glad this happened: that otherwise she might never have had such a close walk with God. She gave up her driver’s license with dignity. I was crying, even the clerk helping us at the Department of Motor Vehicles was crying, but Sarah just smiled for the new picture on her DMV Identification Card. At first, many people told us that it looked like Sarah was in denial about it all. She just never really fell apart. Now, two years later, I know that it was, and is, the power of our Almighty God that has given her such a positive attitude. He has been her Guide and Comfort through many, many hard places.

The battle is not over yet. I am thrilled when people tell me they are still praying for her. Recently at a choir rehearsal, her name was mentioned for prayer. Those prayers very literally sustain us. At first, every conversation with Sarah revolved around her vision—books on tape, enlarging music, magnifiers, etc. It isn’t that way any more. She has other things to think about. She was privileged to be one of eight young people chosen to visit our churches in the Dominican Republic and then later, a trip to Korea, visiting our churches there as well as attending their Youth Camp. She had such a fabulous time there that she didn’t want to come home!

Perhaps some of the pain that Dan and I feel will never go away. We are caught off guard sometimes when we realize there is something new that Sarah can no longer see. Her ability to continue to play in the church orchestra is unclear. The battle isn’t over, but I do know that He has great things planned for her.

After all, He told me so!

Marylee Walden and her daughter, Sarah, are members of the Apostolic Faith Church in Portland, Oregon.