Once upon a time, in a kingdom far far away, there lived a princess who wanted to be just like all the other princesses. She tried to dress like them. She tried to walk and talk like them. She wore a mask so that nobody could see her true colors. At first she felt like her efforts worked. As the years went by, it grew more and more exhausting to keep up with all the other princesses. One day while trying to keep up, she stumbled and fell into a puddle. Her gown tore, her mask was soggy, and she cried. She cried, and cried, and cried.
As she cried, she removed the heavy mask and looked up. For the first time, she could see clearly. She saw that all the princesses were wearing masks. Without the mask, the sun warmed her face, and the breeze dried her tears. Without the mask, she could breathe and felt free.
Without the mask she was beautiful.
Are you a parent of a blind/visually impaired child living in Nevada? Do you know a parent of a blind/visually impaired child in Nevada? Are you a teacher of a blind child, or a medical professional who works with blind children? If so, than I am looking for you.
Allow me to introduce myself. My name is Terri Rupp. My almost 5 year old daughter and I both have Optic Nerve Atrophy. I wrote about the discovery of our daughter’s diagnosis earlier this year in my blog, “Marley and Me Musical Chairs.” I feel fortunate to have my own experiences of growing up as a blind child, the opportunity to attend the Louisiana Center for the Blind where I learned Braille and other blindness skills an where I was introduced to the positive blindness philosophy of the National Federation of the Blind. The foundation has already been laid for my daughter through my own blindness for her to grow up knowing that blindness isn’t anything to be ashamed of. It will NOT hold her back from a bright future, rather it will give her strength to overcome any and all obstacles if given the proper training and opportunity.
My husband and I want to share our positive outlook on blindness with other parents. In all honesty, we both went through our own grieving process upon the diagnosis. However the self pity, anger, guilt, and tears quickly tried up, and we both realized that this is just another mountain for us to conquer as a family. During our frequent visits to the pediatric ophthalmologist, we have observed countless distraught, lost, and grieving parents of whom we just want to shout at, “YOUR CHILD IS FINE! YOUR CHILD IS NORMAL! YOUR CHILD HAS A BEAUTIFUL FUTURE!”
My dream is to get this message to every single parent in Nevada. You are NOT going through this alone. There are so many us out there just like you. We are dealing with understaffed and underfunded school systems. We live in a state with very limited resources for equal opportunities for the blind. We CAN change this! With the resources and support of the National Organization of Parents of Blind Children (NOPBC) and the National Federation of the Blind (NFB), we can change what it means to be blind, and give your children the future they deserve.
Please join us in organizing the Nevada Organization of Parents of Blind Children. You can reach me at firstname.lastname@example.org or join our Facebook group https://www.facebook.com/groups/653738258066532/.
Oh, and PS, did you know that October is National Meet the Blind month?
As we continue on through our Marley and Me saga, I make it a point to make blindness and the word blind something Marley will relate to with proud and possitive feelings, not ugly or negative ones.
So often in the world blindness is accompanied with sadness, pity, shame, grief. It is my goal to abolish any negative ties to blindness in my daughter’s world.
If the world could only view things through the eyes of an innocent child, it would be a much more beautiful place.
During one of our discussions about the word blind, I had explained to Marley how people who need to read Braille and use canes are called blind. Marley’s response, “And we’re all human beings!”
One of my favorite photos from this summer. Even with reaching around with both My cane and Marley’s cane, we still barely manage to make it halfway around that giant redwood tree.