Growing Up Blind

in a rare LCA world


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#SundayFunday

It’s a rainy Sunday and Eme has been cleaning her room. Yes, blind kids can clean. Yes, you should be teaching your blind kids to clean their room & do chores around the house just like everyone else. We’ll come back to that another day…

Today, I wanted to show you this. 


Pretty isn’t it?! 

If you’re a parent or a teacher, you’re most likely thinking, “…uh, no.” That’s a horrid looking excuse for a folder. Ok. Ok… Then what about this one???


Not much better, huh?! 

To a parent of a blind kid, this tacky looking folder is blissfully beautiful. It’s plastic, so it’s durable. It’s the same size as everyone else’s. It fits in the classroom folder box. It has Eme’s name right on the front – just like everyone else’s. And, most importantly, her name is in Braille and print! 

This folder screams inclusion!!! Just like everyone else in her class. Her teacher & friends can find her folder and read her name AND she can read her name on her folder. 

Granted, a step up for an overachieving teacher would be to make everyone’s folder like this one. Then, everyone could read everyone’s names on all of the folders. 

But today, we are sharing this folder. This act of inclusion. 

Teachers, little things like this ugly little folder matter. They matter A LOT!!! To a third grader that is blind and clearly very different from most, this ugly little folder with its index card and packing tape means they are one of the team. One of the bunch. Baynham’s Bunch.

Hats off to Mrs. Baynham for taking those extra steps to include our #littleblindgirl in a way that mattered to her. In a subtle way that kept her included as part of the class. 

Please pass this post on to your teacher friends. You never know when they might get a low vision or blind student!

Eme is finishing up 4th grade this month. But she has had some of her work from 3rd grade tucked into this folder which she kept in her room…well after 3rd grade was over. Drawings of moon phases, drawings of shapes & stars… “What?!” You say!? How does a little blind girl draw?!? Yes, she draws. ALOT!!! But we’ll  save that for another post… 

I’ve got to get back to going through all the stuff she’s pulling from her room on this rainy SundayFunday! 
Bye for now!😎 Tabby, Eme’s mom


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#tbt Throwback Thursday

I’m always amazed at how far we’ve come when the looking back pictures come up in my Timehop App or in the On This Day feed in faceBook. Regardless of the emotion that is brought up from the photos of yesteryear, I am always amazed. That’s the perfect word. Amazed. Amazed at how far we’ve come. Amazed at what we’ve overcome. (Amazed that I’m still alive.) But most importantly, I’m always amazed at where we are today. 

Take today’s #throwbackThursday #tbt post on our EmesArmy Facebook page…
  
(A barefoot little girl in purple glasses is holding black cards & gazing at the 2 inch white letters on the cards. She is arranging the cards on a brown kid sized table & bench in 2 rows of alphabetic order – lowercase & uppercase.)

That’s our #littleblindgirl in March of 2010. I checked the math with her this morning – she said she was 3. I believe her. The conversation went just like this:

“Eme, how old were you in March of 2010?” 

“Well, I would have been zero in August of 2006 because that’s when I was born. 1 in August of 2007; 2 in August of 2008; 3 in August of 2009 and 4 in August of 2010.”

I fully expected her to say 4. After all, she is 9 years old & birthdates & months can be hard for adults – like me… But no way man… She matter-of-factly said, “I would have been 3.”

In March of 2010 when this picture was taken, our little Eme was 3 years old. I had NO IDEA  what her future held. What my future held. I was living in a fog. It was a really hard time that I don’t like to think about. I was in & out of medical & specialist appointments with my little Eme every other day. I was trying to get my head around the words “cognitive delay”. What in the hell did that mean? 

I am a mother of 5 with a masters degree in public health. I knew damn well what the words meant, but when I heard those words used over & over to describe my little Eme, I simply did not hear them. My brain couldn’t figure out what they meant. It couldn’t compute. It didn’t make sense. I didn’t hear them. 

“Retarded?” “Unable to learn?” “Slow learner?” “Brain not working?” None of the words or phrases I heard doctors & professionals say over & over connected to “my” reality. This couldn’t possibly be happening to me. My oldest 2 kids were straight A students. Honor students. My genes were good. You know the thoughts…

It was VERY hard to process that my 3 year old could say her ABCs like a champ; but she couldn’t identify any letters when I would show them to her over & over. (Ok, it was really over & over & over & over. I was a little incessant.) Sometimes she was right. Just enough to tease me and make me think she was learning them. Actually it was more like, “just enough to make me hope she was learning them.”

I showed her letters on her sisters’ flash cards. When she would get one right, I would praise her (and say my internal hallelujahs) & excitedly mark the date on the back of the card. After all, she was my youngest & last child – it was ok to write on the flash cards! We were proving everybody wrong & the cards & charts I made were my proof. My data. But my data pointed to Eme not learning her letters. 

My little cutie was everything but consistent. It made me crazy. It seemed like she just couldn’t learn the letters. I struggled with thoughts that I must be expecting too much. …that I must be pushing too hard. I convinced myself that I needed to accept that kids developed differently. I scoured over developmental charts & charted what she COULD do. I dug out baby books & hospital & check-up records from 1995 – 2006. Eme was #5. I was really close to having a statistically significant sample size… (That’s a nerdy science joke. But it’s how I was trying to make sense of things that weren’t making sense.)

When those results were not comforting, I convinced myself that I should listen to the specialists & that I shouldn’t compare her to my other children. After all, she was born much smaller than everyone else. She was tiny in comparison to the four siblings before her. Unlike her siblings, “stout” and “healthy” we’re not words used to describe little Eme. As a matter of fact, when her big blue eyes appeared to vibrate & bounce back and forth when she was a baby, we were told that it was likely “just taking the muscles in her eyes longer to develop & tighten up.” (Nystagmus is what it’s called.)

It was a long hard road to this specific day in March of 2010. On this very day, six years ago, I stood in my kitchen marveling at my 3 year old daughter as she unscrambled & put 2 sets of the alphabet in linear order. I wept as I watched her tiny little fingers graze the textured sandy surface of each card. She didn’t really “trace” each letter, but she was clearly “feeling” their shape. 

My little Eme was not “cognitively delayed”; she was going blind. She simply couldn’t see. She couldn’t see the things I used to teach her. She couldn’t see the things I used to quiz her. But she could feel these letters on these cards. 

When I asked her to identify things, I was doing it based on sight. That is all I knew. 

Today, as I look at this picture, all I can think is “WOW.” One word. Wow. 

“We’ve come a long way baby” seems to be an understatement. How fitting that we’ve been celebrating #InternationalWomensDay this week. I have zero doubts that my little girl that happens to be blind is going to #changetheworld. She just needs the right tools. I now know that. I didn’t know that in 2010. 

I never dreamed she’d be a straight A honor roll student. I never dreamed she’d qualify for gifted & talented. Honestly, at that point, standing in my kitchen in 2010, I didn’t even know she could go to public school. Every single dream we started her life with as parents had been chipped away by every medical appointment over the course of 3 years. At one point, we didn’t know if she’d live to be 3… But that’s another story…

The unbelievably huge epiphany that changed Eme’s life & my life started on this day in March of 2010, just six very long short years ago. On this day, I was taught that she was not “cognitively delayed” or “cognitively impaired”. She likely didn’t have brain lesions or a deteriorating ability to learn. She was just blind. That’s it. Just blind. 

THAT I can deal with. THAT computes. 

You can follow Eme’s journey #GrowingUpBlind through our EmesArmy website. We’ll be sharing more through our blogs & social media accounts. Follow us on Twitter @EmesArmy &  Instagram for all of #EmesAdventures! (And she has some doozies!)

You’re welcome to connect with me, her mom on Twitter or by commenting below. 

βœŒπŸ»οΈπŸ’™πŸ˜Ž Tabby Mitchell


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Eme’s Rainbow Jars

Eme’s Rainbow Jars are now available for shipment! $10/pint $20/quart

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Shipping is $10 sent USPS Priority Mail anywhere in US! (Pls add it into your donation.)

Order multiple jars for shipment to one address & pay actual shipping only! Contact us directly to arrange shipment of BIG orders!

If you would like to donate to Eme’s cause, but do not want a Rainbow Jar, you can do that with the donations buttons on this page. Any amount can be entered into the amount box. 

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Here’s the backstory πŸ™‚ to Eme’s Rainbow Jars…

Eme can’t see a rainbow. She’s never seen one. We’ve tried over and over.

It’s depressing for everyone involved that we can’t share the simple wonder of a rainbow with her. Her sisters & brother always try to help her find it in the sky when they magically appear. Mom & dad try to get the absolute best viewing angle shooting to the side of the road or easing down driveways. They’ve chased the rainbow for 6 years now.

Last year, mom found this craft on Pinterest (of all places, right?) and she showed it to the kids. Immediately, they discussed how they should make it so Eme see each color up close by laying each color of Skittle on a contrasting color like a white or black piece of paper. She still has a little bit of her central vision – about 5% of what most people have. Mom thought Eme could better understand how a rainbow was layered colors if she could stack them one by one herself. The family is accustomed to thinking out of the box to share their sighted world with Eme, their blind little sister. Her sisters immediately said, “Eme can taste the rainbow.”

Then, with big eyes to go with their big hearts, her sisters asked if they could make the Rainbow Jars and sell them to raise money for Eme’s gene therapy treatment. Eme was born with a very rare genetic mutation that is causing her to go blind from a condition called LCA, Lebers Congenital Amaurosis. Eme is thought to be 1 of 300 in the US with her disease causing CRB1 mutation. Right now, a gene therapy treatment is her best hope. A treatment in development can save her sight and potentially restore her vision. But, her family is working against time. If too many of Eme’s retinal cells die from her CRB1 mutation, the treatment will not work.

Her family organized EmesArmy.org and they actively raise money to fund LCA Research. In 2013, the girls made Rainbow Jars and sold them for $10/pint & $20/quart. Their brother made all of their flyers and order forms. πŸ™‚ This year, they are at it again!

Eme’s Rainbow Jars are now available for shipment!

ORDER NOW TO HAVE THEM FOR EASTER & MOTHER’S DAY!!!

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email any Questions EmesArmy@gmail.com

THEY MAKE FANTASTIC TEACHER GIFTS TOO!!!

$10/PINT $20/QUART


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Growing up RARE

Eme has heard us say, “she is 1 of 300 in the United States with her rare blinding disease.” She has heard us talk about it as a family. She has heard us talk about it with her medical team. She has heard us talk about it with her teachers and with our community.

Emerie was diagnosed Β with Lebers Congenital Amaurosis (LCA) when she was 3. We have always been very upfront with her, it is HER diagnosis. Her reality. Her future. Her present. We have always givenΒ her the facts as we get them. We have always encouraged her to ask questions when she is with her medical team. She has always been present in her care. There is no whispering or hiding her reality from her. There never has been.Β 

Simply put, Emerie is blind. She knows she’s blind. She knows that her eyes don’t work as well as most other peoples eyes. She knows she has LCA and that it is causing the cells in her retina to die. She knows that her LCA is caused by a gene mutation of her CRB1 genes. She knows that she got one mutated CRB1 gene from dad, and one mutated CRB1 gene from me, aka mom. She knows it is just part of what makes her Eme and that it was something that took place as she was developing into a baby while in my belly. She knows that we had no idea that we were making a mutant…a super girl πŸ™‚

But does she know what RARE really means? Can she grasp that she is 1 of 3,000 thought to have Lebers Congenital Amaurosis, LCA, in the entire United States of America?!? Can she grasp that she is 1 of only 300 that has mutated CRB1 genes in the entire United States?!? I don’t think so…it’s a hard concept to grasp. There are more kids in Eme’s elementary school than there are CRB1-LCA mutants in the entire United States of America! That’s just hard for anyone to grasp.

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Four years into LCA and the rare disease world, and it’s still hard for me to believe that I managed to make such an ultra rare child…such a super girl. This blog is about her and our adventures growing up blind in a very sighted world. Hang on because it has ups and downs, wide curves, and what often seem like neverending spirals and endless dropoffs. But we love the ride. Roller coasters are Eme’s favorite.