Wednesday, September 18, 2013


Out of my mind...are you out of your mind, I think in some ways we all are. I just finished reading a book called Out Of My Mind...I read it because Becca has to read it for school this year, I plan on reading all of the books she has to read … Out Of My Mind, is a little close to really got me going...wondering what goes thru Ian's mind that he is not sharing with us. What if he could get more words out, communicate easier, what would he say? What do other kids think when they look at him, do they think he's stupid, a retard (ugh I hate that word) .. do kids look at him and think because his body is messed up that his brain does not work? If other kids really took the time to have a conversation with him, what would those conversations be like? Ian has a wonderful sense of humor and a lot to say if others took the time to talk with him. How frustrated does he get when he can’t communicate easily, when he sees others looking at him and making comments, he sees everything; takes it all in - knows everything that is going on. We know it is hard on us to try to figure out what he is trying to say but I imagine it must be much more difficult for him.
Day to day life is different living with a motor neuron disease (MNDs), one that you have to live in to really understand. Every MND is different, every case is different. Each family’s journey brings light to their own sadness and despair along with hope and happiness The emotions run high and low within a matter of minutes. The reality of MNDs, if allowed to think about it , can quickly take you to a deep, dark place. At the same time, the will and determination of those who suffer from it can bring you to a place full of life, joys, hopes and dreams. Even with all of the “little” challenges which come with MND’s, we are surviving. Nothing is simple or easy, everything needs to be well planned out.

Many times I have told people to make your memories...and I believe this more than ever. Tell your children how much they are loved, how precious they are. Embrace them with a love of life and goodness, a love of learning, a love of right and meaning. In Out Of My Mind, some of the kids are mean, bullies, make fun of those with disabilities…since we know some people are evil, we have to do good. We know that some people are hurt by other people, we should be kind and caring to everyone we meet. Remember that those with disabilities are just like everyone else, after all we all have disabilities, what’s yours?

1 comment:

Anonymous said...

Amy Eisenberg Samay Marci, you and Becca might also like the book "Wonder", by R.J. Palacio. I just finished reading it. Plan to read "Out of My Mind" too, and they are similar. If you're interested in Wonder, you can borrow mine. Most of my sixth graders who have read it said it was the best book they've EVER read. The main character is a fifth grade boy going to school for the first time. (He had previously been homeschooled due to surgeries related to more than one rare genetic disorder). It's really uplifting.

Marci Weinberg Scher Amy would love to read it.

Samantha Gitli Schaefer Zach and I are reading Wonder too! Great book!