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.

Echolalia and repetition... no pun intended

Many blind children go through a phase of Echolalia, as they automatically repeat what someone else says and then sometimes answer afterwards. I've found my daughter uses echolalia to process the information and build sort of a database of questions and answers in her head. It took some time for her to begin developing thoughts and phrases of her own instead of just pulling a relevant, and sometimes irrelevant, phrase from her list. For example, a common question to her would be, "Are you hungry?" and she would answer, "Are you hungry? Yes, I'm hungry." Finally, she would answer something like "Yes!! I want some more turkey Mommy!" That day was a very happy day for me. I could tell she was learning to express her thoughts, wants and needs instead of getting frustrated with the lack of effective communication.

She still has some tendencies to work out. When she is on the potty and wants to be alone, she says, "I'll be right back" when she really means "mommy leave and come back when I'm finished." LOL But potty training is a whole other story...

Anyway, not long ago she began a new phase of repeating the same question over and over and over again. Pretty much til I wanted to pull my hair out- I would insist that she knows the answer, so there's no reason to keep asking. But when she obsesses over something and gets upset, still repeating the same phrase or question, I find myself worried that she is trying to tell me something other than what she is actually saying. I found this article on Parenting.com that gave a little insight. It's pretty short and to the point. I recommend anyone going through the same thing to check it out- if you want! Also, the wonderbaby.org website has a great article on echolalia as well.

http://www.parenting.com/article/why-your-toddler-keeps-asking-the-same-question?cid=tw