See the World with Your Heart, Not Your Eyes

When I think about all of the things Madilyn is missing because she is blind, I often consider the bad sights. An animal killed on the side of the road, the worried expression that took over my face when the doctor said she would need a major skull surgery, and the numerous harsh images flashing across the television screen. Perhaps it is some sort of blessing to be sheltered by God and not be subjected to such horrific sights, especially as a child.

On the other hand, maybe she is being cheated by not having all the visual information sighted people take in every waking minute- the information which shapes our minds and is stored in our memories forever only to be pulled out in the future as we reflect on the past, make decisions, and plan our lives.

Either way, the visual images are not in Madilyn's mind. Instead, she has memories of what seem to be mostly sound and speech, even musical notes. She can tell you the title, season, and episode number of every Sesame Street on Netflix. She will remember the sound of you voice years from the day she met you. She can tell you the name of a song within seconds of hearing it, and what note the clank of the glass made as we said, "Cheers!" last New Year's Eve.

Some people have asked me if I could give Madilyn sight today, would I do it? Many may think it's an easy answer. "Yes, of course!" they probably believe. But as her mother, it would be extremely hard for me to say that I wanted to change her. She was given to me without sight, without eyes, from Him. Everything she is today- funny, smart, sweet & loving- is because of everything she has experienced from the day she was born, and even before.

To experience this world without sight is something most of us could never imagine. Having not had to actually make the decision, most of the time I don't feel like it should really be my choice to give her sight, even if it was possible. I think that is something she would need to decide herself when she is older. People may not understand that I believe Madilyn might not want to be different than she is today, with the life she knows. Maybe she is perfectly happy without sight... She most certainly acts that way every day.


But if I could take away her frustrations and the pain she has had to endure through surgeries and doctors poking, I would do it in a New York second. And maybe even those experiences, although not pleasant, have helped shape her as well- it's hard to say for sure. However, I do know that the person I am today, and the beautiful life I live, is because of her. And I thank God every single day.




Read this article and more on BlogHer.

Letters of the Week - Learning Braille

For many blind children, learning Braille is tedious and hard work. It involves an overwhelming set of fine motor skills and sensory input at the tips of the fingers. Many Braille readers are older than their sighted peers when they finally learn the alphabet by touch. At this point it can be frustrating for the parent or teacher to be working on individual letters when the other students are already reading books.

I tend to get too excited about all of it and end up trying to teach Madilyn all the letters too quickly. It is baffling to know she can verbally spell most any word given to her, but mixes up the Braille letters "b" and "c" with "l" repeatedly. (She can also write all the letters on her Brailler.) So I've been working on giving her sets of letters to learn as a group. The first set we tried included "a,b,c,l,e" but as I just said, she mixes up "b" and "l" unless they are given together to distinguish between the two by choice. "Here are two letters. Which letter is b? Which one is l?"

This week I decided to remove "l" from the set and instead work on "a,b,c,e,k" as they are all quite different dot combinations, but all build off "a" or "dot 1". I have to help Madilyn keep her hand from shaking to properly track across line from left to right across the page. She is getting much better at this, but for now I'm helping her while we work on the letter recognition. She practices tracking as a separate activity each day, focusing on going slow and steady, with the right amount of pressure to feel all the dots and spaces on each line.

Click to watch the short 3 minute video of our fun, relaxed lesson on the couch this morning on Facebook! Be sure to "LIKE" us while you're there, too!

4th of July Sensory Water Play Bucket

Madilyn enjoyed her 4th of July Water Play Bucket early so we could share it with everyone! I found most of these items at Michael's Craft Store for 50% off already! Just fill a pail with a variety of water play and summer fun toys for all the senses- like water balloons with a timer ball (think hot potato with water!), pin wheels, star suckers, popsicle molds, and more!