October is Blindness Awareness month. 😎 

Did you know that most people are super freaked out by a #littleblindgirl riding the normal ‘ole school bus? Can you believe that we have to train EVERY new bus driver we get? (Eme does that by freaking them out when she gets on the bus with her long white cane & going to sit wherever she wants just like the other kids.) She doesn’t blink an eye & neither do the kids that have been in classes with her. 

Make no mistake, the bus drivers routinely TRY to make her sit in the front seat – where the Kindergarteners ride on our school buses. Over the years, I have empowered her to handle that little injustice. Not me. And yes, she has had to be assertive at a very young age & stand up for her desire to not be treated like a Kindergartener. This is her reality. 

Blind people of all ages constantly have to stand their ground & work against our human nature to help & protect those with no sight. They have to fight our low expectations. We’re the problem. 

We can’t fathom getting on a bus & going to school if we couldn’t see. It truly is beyond our ability to relate & beyond our ability to imagine ourselves doing it. But blind people do it every single day. To this day – Eme is 11 & in middle school – and has 1000s of school days under her belt. She’s lived in our community her entire life  & it STILL happens. She’s held to the expectations of a Kindergartener. 
Furthermore, we have times when bus drivers REALLY don’t want to let her off of the bus unless a parent is standing right there at the bus stop to receive her. Did I mention that my daughter is 11? Double digits. In 6th grade. This is another expectation of parents of Kindergarteners. It’s just insane the things that  blind kids & their parents have to endure.  

Most people have zero understanding of non-visual techniques & the potential capabilities of those that use them. Many times bus drivers stop & call the school for advice on whether to let Eme off at her stop or to bring her back to the school. The school calls me & I answer that call once – at the beginning of the year – and I simply say, “Yes, we are aware Eme is coming home from school on the bus. Please let her off of the bus.” 

Yes, we know the world is full of crazy people & predators lurking everywhere. But how is she going to develop these much needed self-advocacy skills if she’s not provided the opportunity to develop them & practice using them? Routinely, in the name of advocacy & awareness & safety, I hide like I did today in this video. 🤣 

I let her flex her self-advocacy muscles. 

I let her handle it. 

Is it uncomfortable for her? Of course. 

Do people think she can’t get on & off the bus by herself! You betcha. 

Do they eventually get with the program? 

Watch & see! 

We’re 1/2 way through our 1st quarter of school. 🚌

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I 💛 LOVE the Timehop app. 

I 💙 LOVE faceBook. 

Together, they remind me just how far we have come through the darkness that comes with LCA, Lebers Congenital Amaurosis. 

My youngest daughter, Emerie, was diagnosed with LCA when she was 3. Up until that point, we were under the impression that she just had really poor vision. This impression was guided by the opinions of multiple vision professionals & several medical specialists. 

LCA is a very rare degenerative retinal disorder that essentially kills off the cells in the retina. Those that have never had reason to get all crazy into vision science affectionately refer to those cells as the rods and cones. 

The retinal cells, which consist of way more than just rods and cones, use light to capture images seen through the eye. I like to explain it as the eye being the camera & the retina being the film. 

LCA is a genetic disorder that damages the film. There is usually nothing wrong with the optic nerve that moves the images to the brain. Nor is there anything wrong with the brain. It’s a retina problem. The film is bad. 

At last count, there are 19 various forms of LCA that are currently documented. At this point in time, each form is attributed to a specific genetic mutation that is identified through genetic testing. If LCA is suspected clinically, then a genetic test can often confirm the diagnosis. 

A clinical diagnosis is based on the symptoms exhibited and the judgement of your eyecare professionals. A genetic diagnosis is based on the analysis of blood drawn from the child, and both biological parents. You will get 3 gene reports. Siblings may or may not be affected, and may not be tested if they have no symptoms of vision loss or nystagmus, which is vibrating or rolling eyes. 

In most forms of LCA, the parents are carriers of LCA, which means they have 1 mutated gene that is known to cause LCA. In order for the child to have LCA, the child has to have 2 mutated genes known to cause LCA. In Eme’s case, she got 1 mutated gene from me and 1 mutated gene from her daddy. This is a recessive inheritance. 

Anywho…parents usually have no idea that they are carrying a mutated disease causing gene. That was the case for me and Eme’s daddy. Furthermore, extended family may have no signs of LCA or blindness on either side of their family. This was also the case for me and Eme’s daddy. 

Eme is 9 now. It’s been 6 very long years since her diagnosis. Timehop and faceBook remind me so vividly of how far we have come. Her vision has faded. She can see less and less every year. And every year I see more and more of what I never ever dreamed possible. 

It has happened. We knew it would. We thought we’d have more time. We don’t. Eme’s vision has deteriorated to her only being able to detect hand motions in her worst eye. 

  
Those big baby blues with the longest eyelashes EVER. They’re not working. There is no treatment. There is no surgery. This is the reality we knew was coming. But. We. Thought. We. Had. More. Time. 

So many kids & young adults hold on to their vision until adulthood. LCA leaves them something to work with – what this mom has learned to call “functional vision”.  That “functional vision” thing is huge. It makes a tremendous difference in the lives of blind kids. It’s the difference between being in the dark with a flashlight or being in the dark without a flashlight. Some flashlights are better than others, but a flashlight is a flashlight. 

 
Eme’s flashlight is going out. We can’t buy her more batteries. We can’t get her a new bulb. We can’t even get her another flashlight. 

From the day of her genetic diagnosis with Lebers Congenital Amaurosis (LCA-CRB1), we have worked to get a treatment developed for her very rare inherited condition. We knew a treatment was possible. Anything is possible with science.  A treatment just hadn’t been developed…yet. Who wants to finance the development of a treatment that would only impact about 300 people in the US? No drug company I know of would take on that burden. There’s no money in it. So what’s a parent to do?! We need batteries! Bulbs!! New flashlights!!!

We faced reality. Our little girl was going to go blind. So, we taught her how to be blind. It’s been a wild ride, but our #littleblindgirl is all good. In fact, she’s much better at dealing with the fact that she is blind than the rest of us. We’re the problem. We’re the ones that are mourning the loss. We are the ones that cause problems. She’s all good. Sure, she gets frustrated from time to time with certain things. But who doesn’t? 

So what do we do? Her fully sighted family. We wisk her away to a different part of the world to “show her the world” before it’s too late. Before all of her vision is gone. We need for her to see things that are very different from what she has seen in her house and yard in Virginia – or on her family trips around the southeastern United States. 

  
We invite you to join us as we chronicle #EmesAlohaDreamTrip

Yes. We took off to Hawai’i. 

For. The. Entire. Summer. 😎🌴🌊🐠🐚🐙🐡🌺

Please print this scannable and use it in your office or school as a flyer or poster. Whatever works best for you. QR code enables scanning with smart phones & will take folks directly to our #Valentines4Veterans page where they can donate any amount to send as many dozen cookies as they want to our wounded warriors!