Happy New Year, friends.
I keep hearing that 2020 is the year of “#Acceptance” so today I’d like to respond to a question from a friend who asks: “You seem to have fully accepted Kai’s sight loss. How do you think you were able to do that?” Continue reading “The Mystery of Acceptance”
Hi friends, I’m super excited to share another Hindsight 20/20 article. This article was written by Mary Woodyard about raising her son, Tommy, who is currently a senior at the University of Georgia. Tommy also happens to be legally blind. I’m so grateful that Mary took the time to share her wisdom with us parents who are still in the thick of advocating for our children’s accessibility needs in school.
Each 20/20 interview will be unique because blindness is a spectrum and each child, parent, and family has different circumstances, goals, and expectations. As parents, we need to educate ourselves and consider advice from reliable sources — foundations, doctors, teachers, and so on (the list seems endless) — but ultimately, we are our children’s greatest advocates. I strongly believe that other parents who have “been there, done that” are our best resources. So, let’s navigate blindness together!
Alright parents, grab a cup of coffee or your beverage of choice, get comfy and enjoy.
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1. What was the first symptom you noticed and what was your child’s age?
He was born at 26 weeks during what I thought was a normal pregnancy. He had contracted an infection which made him very sick; but, it did not impact me at all. When he was born, there was confusion as to his gestational age. The doctors were not sure if he was 25 weeks or 26 weeks. There was no consensus until he was a month old. Doctors warned me his brain was underdeveloped and felt that he would have GI issues. In addition, he had: a hernia, a hole in his heart and a pound of fluid in his body that was not supposed to be there. They were worried that his brain was not developing. He was 1.9 pounds when he was born. They told me not to worry about his eyes – they would be fine. Continue reading “Hindsight 20/20 Featuring Mary Woodyard”
We Have a Daughter. She is going blind. She helps us to see. Written by our special guest, Addison’s mom: Diane Bealer.
When our oldest child (a girl) was just over a year old we noticed that she couldn’t see in the dark. This was a little worrisome to us but we didn’t freak out about it because we didn’t know we should for one, and we didn’t have any clue of the implications for another, the most important reason is that we weren’t ready for the truth at that point in our lives. As she got older we started noticing more clues that something wasn’t right with her vision. She would trip over things in dim light. She would freeze in the dark and not know where things were located. She NEVER got out of bed at night, unless there were bright lights on.
We took her to her first eye appointment when she was about 3-4 and the optometrist examined her and agreed that she needed glasses for nearsightedness but did not believe us about night blindness. It just did not occur in children that young. It wasn’t possible. This happened for 3-4 more years, every year we would go to the eye doctor and plead with them to do a more extensive exam, longing for some kind of answer. Every time it was the same thing. “Kids don’t get night blindness this young”. “You’re worrying too much”
Then the year she was going to turn 8 we took her to her annual exam, and once again I told the doctor of how she ran into things in the dim light and dark. How I knew in my heart something was going on with her eyes. He did the regular eye exam and said he couldn’t see anything wrong with her eyes.
Then I asked a question I hadn’t thought to ask before, “Will you do the same exam, but in the dark?” Continue reading “Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP”
Part 2 in a special series with www.victoriaclaire-beyondvision.com
Written by: Kim Owens, mom of Kai Owens.
Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid. He refused to sleep in the dark and he clung nervously to my side. His personality changed drastically and we were terrified. Over the next year, we visited many specialists but received no clarity.
Then one day I noticed that his handwriting started in the middle of the page and trailed off the right side. I asked why he wasn’t using the left side of the paper and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely. Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision. The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny. Continue reading “From A Mother’s Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”
I am deeply tired. We have been having a rough time lately. My autoimmune disease has been flared up causing pain, fatigue and general malaise. Kai just underwent his bi-annual appointment at the eye clinic 4 hours from home. It’s hard to endure those long drives, long waits and painful tests when the outcome is only for school documentation — no treatment. Top that off with my oldest son having to learn some hard self-care lessons while away at college and sprinkle it with my dad’s inability to admit to a severe drug and alcohol addiction and I find myself wondering: Am I willing? Continue reading “Willingness is the Key”
Hi everyone, I’m excited to introduce you to my Instagram friend Jen from Fit Chick With The Stick. Jen caught my attention instantly because, like my son Kai, fitness has become her “fix.” Please join me in learning how fitness has impacted her sight loss journey.
My Own Independence Day by Jen Dutrow
The day is warm, the temperature is perfect, a light breeze blows through the open car windows. The sky is cloudless and a beautiful periwinkle blue. You’re driving along the coastline with your favorite music blaring.
Now, imagine never doing that again by yourself. That’s what happened to me after my eye doctor told me I’d have to hand over my license. I had driven to work that day not knowing that was the last day I’d ever drive. Continue reading “KnowledgeABLE Featuring Jen from Fit Chick With The Stick: My Own Independence Day”