Future Reflections Spring/Summer 1994, Vol. 13 No. 2


by Kathy and Nick Andrus

From the Editor: Kathy and Nick Andrus were among the several hundred parents who were the earliest readers of Future Reflections. In the October/November, 1982, issue (volume I, number 5) I remember publishing a helpful tip letter from Kathy in the new Hear Ye! Hear Ye! feature. Her daughter, Kate, was only eleven months old at the time. Kathy also asked us to publish her name and address in the magazine (which I did) so she could network with other families who had children with aniridia (the cause of Kate's blindness). A few years later, Kathy contacted the National Federation of the Blind about getting a cane for Kate. She and her husband had read articles in Future Reflections about the benefits of early cane use and were considering getting one for Kate. 

I was, therefore, greatly saddened when I learned of Kate's death about a year and a half ago. Kate's life was far too short, but there was nothing limited about her courage and the impact she had on those around her. Kate was not only special to her family and friends, but she was important-whether we personally knew her or not-to all of us in the National Federation of the Blind. It was for Kate, and for all blind children like her, that we in the National Federation of the Blind established Future Reflections and the National Organization of Parents of Blind Children. But Kate was even more special than that. Although they probably never thought about it this way, Kate and her family were pioneers. Kate was part of that original group of children-a few hundred at most-who were the first to be raised from birth with the philosophical and practical guidance, via Future Reflections, of the National Federation of the Blind. 

For these reasons, we mourn Kate's passing and join with her parents, Kathy and Nick Andrus, in the following A Tribute to Kate.

On July 2, 1992, our daughter Kate died three months before her eleventh birthday. Born with aniridia, glaucoma, and cloudy corneas, Kate also had a congenital heart condition, aortic stenosis. As a student at Pine Spring Elementary School in Fairfax County, Virginia, Kate spent five happy years in school. She was in Anna Swenson's vision class and mainstreamed for a portion of each day. She loved school, especially science, math, and being with her friends!

In November, 1991, Kate had her first heart surgery to replace the aortic valve. All appeared to go well. However, in the three months that followed many complications developed. In March, 1992, she reentered the hospital with endocarditis, an infection in her heart. Another valve surgery along with two pacemaker surgeries followed during the long two and one-half months she was in the hospital.

After she returned home in late May, she appeared to be making excellent progress and was able to do some of her favorite things again, such as swimming, roller skating and going to school for short periods of time. But she tired easily and was not building up the endurance that the doctors assumed would occur. Sadly, on the evening of July 1, she began to feel ill and died unexpectedly here at home with her parents and four older sisters.

During the many long months Kate was hospitalized and/or recuperating at home, her vision teacher came regularly to see her. On days when she was in intensive care, or just too sick to do anything, Miss Swenson would come and read to her and tell her about what was going on at school. She would often bring Braille messages and tapes from Kate's friends.

How pleased Kate was the day that a couple of her adult friends arrived at the hospital with their guide dogs to visit her! But the hospital administrators were scurrying about trying to determine their policy about guide dogs in the hospital and fearful of a suit being filed should they err in the handling of this occasion. Since Kate was soon to be released from intensive care, we were able to easily move her to an area of the floor that was reserved for visitors so she could be with her friends. Experiences like this kept her going and gave her hope.

Our experience in the hospital with Kate was filled with a series of situations which reflected a lack of sensitivity and understanding by some of the health care professionals. Some were put off by Kate's insistence that everyone explain the details of what was about to happen to her. They were reluctant to spend the time that Kate needed to help her understand what was about to be done to her. Her questions annoyed those who seemed to be always in a hurry.

We did encounter several outstanding professionals who recognized that the hospital can be a scary setting for children, and they helped give Kate some control over her own situation. One nurse found an I.V. pole that had a large handle so that Kate could push it herself as we walked around the corridors. With regular poles  we would have to move it for Kate, often resulting in inadvertent pulling on her I.V. lines. Another thoughtful nurse taught her how to carefully remove the tape on a bandage securing a central I.V. line. The bandage had to be changed daily. By giving her some minimal control over her environment, she seemed better able to get through this otherwise arduous and tedious experience.

Kate knew the details of all of her surgeries. The surgeon and his assistant took great pains in explaining procedures to her. At one point she asked the surgeon if he would be opening up her chest with a regular saw or a chain saw! She was curious about the heart-lung machine and wanted to know how it would be used to circulate her blood. She remembered the times that medicines were to be given-and she sometimes had to remind us when things were getting bogged down. The voices of the regular, daily visitors were etched in her memory. She looked forward especially to the morning sounds of the breakfast trays, the cleaning carts, and the friendly people who always stopped to chat with her. Her body was stuck and cut beyond belief, but she always seemed to cope as long as she was told beforehand what was to happen to her.

Her cane is still now. The wonderful Braille books and stories that she wrote are stacked on the bookshelf. Kate used to talk a lot about heaven, and she was curious as to whether she would be blind when she died. We assured her that as the Bible says she would be able to see forever. That initial news was met with disappointment. Oh darn, then I won't get my guide dog! which was her most persistent goal in life!

We miss our Kate. She had so many things to complicate her life, but they never seemed to stop her. She was at times slowed down but she never gave up. Her bright and spunky manner kept the rest of us going when it was hard to keep moving. On receiving her first cane when she was three, Kate exclaimed, At last, I have my very own field hockey stick! (Two older sisters were players.) We assured her that her cane was far better than a field hockey stick. And it was, as it proved to open up new areas of independence for her throughout her short life.

We appreciate the support we received through the years from our friends and from the National Federation of the Blind and hope that one day we can give back as much as has been given to us.