Wednesday, September 25, 2013

Out of My Mind ...2

Becca came home from school today and told me they started reading the book. She continued to tell me Melody reminded her of Ian and they inspired her. Really, again my daughter continues to blow my mind. I am interested to know how the book and Melody continue to remind her of Ian.

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?

Friday, September 6, 2013

Tips on Life

Looking back over the past year, I think about all, the things we have done, all the decisions we have made; comments/concerns from others (mostly good); conversations we had with each other, doctors, family members and friends. 

I am also reminded of a post I read back in July on an aquentencies blog called Tips on Life. This was a road map put together by a group of counselors for their campers at a sleep away camp. They sent it home with the campers for them to remember and to be able to put into includes some of the simplest rules of life which at times we all forget but should remember:
  • It is okay to ask for help.
  • You do not need to be strong all the time.
  • Nobody is perfect and everybody is fighting their inner battles.
  • Be kind.
  • Treat others how you would like to be treated.
  • Not everything you learn in life will be in a classroom.
  • Anything worth having is not easy to attain.
  • Love is not supposed to be painful, true love is easy.
  • Love is not a maybe thing, you know when you love someone.
  • Do not be reckless with other people’s hearts and do not put up with people who are reckless with yours.
  • Do not be afraid of life, it is meant to be lived.
  • Live your life with no regrets.
  • Try your best with everything, it is better to try and fail then never try at all.
  • Do not put your happiness in someone else’s hands.
  • Destiny is for losers.
  • It’s not an excuse for things to happen instead of making them happen.
  • Be independent, go to movies and eat alone sometimes.
  • True friends are rare and hard to find.
  • Surround yourself with people who truly care about you.
  • You will have friendships that last a lifetime and friendships that fizzle out quickly, this is normal.
  • Is inner beauty important? Inner beauty is very important.
  • A kind heart will shine through.
  • Love like you have never been hurt and live like you were dying.
  • And then there was this line at the end of the letter: If you had a friend you knew you’d never see again, what would you say? If you could do one last thing for someone you love, what would it be? Say it. Do it. Don’t wait. Nothing lasts forever.
This post hit me hard back in July and I asked for permission then to use it (thanks Mark). I knew I would know when the time was right...

I have thought about each of the above tips...knowing that we don't do as many as we would like too. I know we have wronged people over the year, some we may have realized when it happened or soon afterwards, I hope we said "We are sorry" at that time. Some we may not have realized as we may have been wrapped up in our own lives or just did not realized, so please accept our apologies now. I hope over time we remember more of the tips and get better at doing them.

To all of those who have told us that we are strong, an inspiration, questioned how we do everything we do...well our answer is simple...we aren't always strong, aren't always an inspiration, and we don't always do it but it is easier with all the support and words of encouragement we get. It is remarkable who and what is out there. We are just caring for our children, loving our son and daughter, being their parents.

Tuesday, September 3, 2013

Thirty-One....Thank You Mitzi

My friend Mitzi Spiegelman has put this together. There are not enough words or ways to thank her.....