A MOTHER'S JOURNEY

What is it like to be the mother of a child with albinism? Whitney was the third child born into a family with a mom, a dad, and 3 siblings. All this happened within a span of three years. Almost four years later, another sister would be added to the family. On the day that Whitney was born I was concerned that her brother and sister wouldn’t be accepting of their new little sister. consequently, I arranged for Whitney to give them each a present from her, a mickey mouse for brother and a minnie mouse for sister. They were thrilled and loved their new sister even though they were still babies themselves. 

I chose the name Whitney because it means born of white waters. She was so fair with lots of hair that stood straight out. We had no idea that there would be any concerns about her development. The doctors sent us home without a word or diagnosis of the pending challenges that lie ahead. We just knew she had inherited her fairness from her Swedish ancestry. I was told at her first check up with the pediatrician that he suspected that she was blind and had albinism. He said I want my partner to come in and look at her too. I said albinism, "Isn't that those people that are really, really white and have red eyes?" He said, Mrs. Yorgason we need to send you for genetic testing to confirm and verify our diagnosis.


We were asked a million questions about who has sun tans in our family. My husband and I gave them hair samples. After a long wait for the results, the report stated that my hair follicles appeared normal and it was difficult to tell from my husband's since he was losing his hair. After that, we visited eye doctor after eye doctor with no one being able to offer any help except for a pair of glasses that might help her. Whitney would wear them to preschool and take them off as soon as she got home.
    
Being a school teacher, I knew that there was academic help available for children with special needs, and I sought after that help. As Whitney's mother and father,  we were active participants in the classroom at school and the teacher's knew us by our first names and by our willingness to help them. 


I was in denial for many years about Whitney's situation until we met up with the Jr. Blind Foundation in Los Angeles where for the first time I saw other children with albinism and had camping experiences with other families who had a blind child or one or two with albinism. This experience would always bring me to tears where I realized Whitney did indeed have albinism. 
   
For several years, the family and siblings participated in the activities they provided until Whitney's father retired from the LAFD and we all moved to Idaho. The support that we had from the school district and the community was not as helpful as it had been in the Los Angeles area. The church was very accepting however of our family when we moved to Idaho, and we found a lot to do in primary, young women, Jr. High and High School. Whitney excelled in music and found lots of joy in that regard. Whitney always had good friends, and she was not excluded from having a fun and normal life. She has always loved life and all it has to offer. She gets excited easily and loves to smile and laugh and converse. She has brought great joy to her family and friends and especially to her her passion, teaching little children. 
     

Her long awaited goal of graduating from college next month is within our sight, and all the hard work she has accomplished is because of Whitney's innate ability to accomplish anything she wants to do through perseverance and never giving up. If at graduation you hear a mother crying uncontrollably, I apologize in advance, "Ah, the pure joy of being Whitney's mother.!!!!!"


MOTHERS WITH CHILDREN WITH ALBINISM