I’m a worse case scenario kind of person. If my husband calls me on his way home from work, I answer assuming he’s been in a car accident. If I hear one of my children fall in his bedroom, I’m mentally preparing myself for a trip to the ER. Granted, these worse cases rarely ever happen in real life, but I can’t help myself from readying for them. So when my 4-year-old son failed an eye exam – despite having new glasses – I was prepared to hear some sort of bad news.
As it turns out, we didn’t get the worse possible news, which of course would be cancer or some other life threatening condition. But what I did hear seems like a close second: blindness. My 4-year-old has a rare eye disease called Retinitis Pigmentosa and he will be legally, if not totally, blind.
When I first got the news, it felt like I was in some sort of alternate reality. How could this be happening? Sure, my son is very farsighted and has a high prescription for glasses, but blindness? It seemed unreal.
But this is real, and I’ve managed to find a way to survive receiving such shocking news. First, I let myself grieve. I cried as I thought about all the things Noah will never be able to do, like drive a car or watch his bride walk down the aisle on his wedding day. I cried as I wondered if, as Noah’s vision gets worse, he would even remember what I look like. And I cried at the thought of just how much more difficult life is going to be for him, from needing to learn Braille to having fewer job opportunities.
And then I pulled myself together and told myself I had to snap out of it. After all, no amount of crying is going to help Noah. I let my Type A personality take over, and I sprung into action.
One of the first things I did after I stopped crying was reach out to my support network. I created a Facebook page called Prayers for Noah, which I use to update friends and family on his condition. Having one centralized place to go to for support has been a huge blessing to me.
I also looked for other parents of blind children. I found Facebook groups with tons of information, such as Parents of Blind & Visually Impaired Children, Louisiana Parents of Blind Children and Blind Homeschoolers. Being able to connect and chat with other parents has been so helpful as I try to figure out things such as where to buy Braille books and how to teach my son to walk with a white cane.
I also started researching like crazy. I learned that blindness doesn’t mean that someone lives in the pitch-black dark, but is really more of a spectrum of visual impairments. I’ve learned that until we have genetic testing completed, we won’t know exactly how blind Noah will be. In the meantime, we can anticipate that he will have tunnel vision, but still be able to see shapes and light, even though they will be blurry. Knowing that Noah will most likely still be able to see something has been so reassuring to me.
I also researched Braille, and taught myself the Braille alphabet one afternoon while my kids were watching TV. And I learned that there is so much assistive technology available to the blind that really equalizes situations. Noah will have access to plenty of tech to help him study and work.
Finally, I read and watched stories about other blind children and adults. And boy was I inspired. From seeing videos of two year olds navigating outdoors with their white canes to reading stories about successful blind adults, I realized that blindness is not the scary life sentence I first thought it was. Is Noah’s life going to be different from the one I had imagined for him? Sure. But despite this disability, Noah has a bright future ahead of him and I’m excited to watch his journey.
If you are the parent of a blind or visually impaired child, I would love to connect with you! You can find me on Facebook or email me at [email protected]
Hello my name is Theresa im 30. I have a blind daughter who will be turning 13 soon. She has alot of other medical issues like diabetes she is lacking a growth hormone takes levothyroxine. Due to her kidneys not functioning on top of her septo optic dysplasia also know as sod. Which means she has no optic nerve relay. I really commend you Karen I know sometimes it can be hard for us parents. But know I have learned that its a blessing and they teach us new things everyday. Good luck and feel free to email me. Any mom that needs a friend can I live in California. [email protected].
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