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Monday, May 28, 2012

It's All In A Name

Last Thursday my father, Pop, had surgery...it went very well and he is recovering well in the hospital. Later today Becca and I will go see him.  Brian and I decided it would be best if Ian did not go to the hospital as he woke up with a cough.  A cough for Ian may or may not mean something ...it could just be the morning gunk breaking up as he has not been doing much coughing since his treatments.
Ian decided since he could not go see Pop he would make him a get well card. He has made it all by himself, even signing his name....

"Ian Scher" -  the letters are pretty clear.

We actually had a change of plans...Brian thought about it and brought up to me that we could take Ian to the hospital to see Pop as long as he wore a mask to protect him from anything that was hanging out there....so that is what we did...Ian was very happy to be able to give Pop his card on his own as well as everyone was happy to see everyone and know all were doing okay.

Wednesday, May 23, 2012

"An Evening of Appreciation"

Tonight I was honored to attend the Friendship Circles "An Evening of Appreciation". Not only did I attend, I made a speech...

When I was a little girl, I had dreams, just like everyone has dreams... most of mine were the same as every other little girl. In my dreams, I am a grown woman…I have grown up, have wonderful family, fell in love and married my best friend. Eventually, the house, which became a home the moment we crossed through the door. Then came the kids, the house became more of a home…and the dream of those kids and all the things we would do with them. The kids would grow up, and have their own dreams, their own home, their own kids…well, all of that has come true…at least those that could so far...maybe not exactly like my dreams were as a little girl.

A dream. As it has been said “Man plans, G-d laughs.”

Now my reality, I am a grown woman…I went to college, during college met my best friend, Brian, graduated and got my bachelor’s degree in public health administration, got a job in a nursing home working in the rehabilitation department, Brian and I got married a few years later, we both went back to school to get our master’s degree, mine in community health education. Next came the kids, our beautiful twins, Becca and Ian born April 22, 2003. This is where some of the dream and reality start to differ...it became our reality, our normal…one part drama, one part comedy, one part redemption, one part…

Our reality, involves many people, most of whom were not in my little girl dreams. It centers around our whole family and we all play a different role, yet this part of our reality is about Ian Alexander Scher, twin B…

Ian is imperfectly perfect. He is affectionate, brave, charming, compassionate, considerate, courageous, curious, dependable, determined, frustrated, funny, gentle, giving, imaginative, intelligent, lonely, loving, lucky, mischievous, picky, polite, quiet, rambunctious, respectful, scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted, and wise.

Ian has an undiagnosed neuro-muscular disease. We have seen some of the qualities I mentioned above change over the past 9 years…he has seen some of these characteristics change over the years. Things he used to be able to do, he can no longer do. We take it one day and one step at a time with the help of all the people who are in our reality.

My husband and I resolved early on that we would not allow this child — our beautiful, imperfectly perfect child — to be “just” a statistic. We want his life to have meaning and make a positive difference in this world. We will do whatever it takes to give him everything and anything he needs and deserves, just like we would do for Becca. I strongly believe, my health care background has enhanced our commitment to our families constantly changing needs.

Today, Ian can no longer walk, he is dependent on his wheelchair; he is dependent on someone to get him dressed; to feed him; to use the restroom. Independent play does not last very long for him. Depending on the toy or game, he needs another person's hands to play. All of his motor skills have deteriorated over the years. He uses an amplifier for others to hear him speak and sometimes uses a Tobii Communication Device to talk to others.

With all the changes and obstacles, Ian has over come...there are two people who help him to continue being who he is...along with all the other things that describe Ian, he is all-boy...and once a week, he can be all-boy with other boys...through the Friendship Circle, two very special teen volunteers come to our door, Andrew Dardick and Logan Levy. They come with enthusiasm, smiles and energy. They’re not getting paid; they are giving of themselves because they want to be with Ian. It is one of the most heartwarming feelings to know that someone is choosing to be with my imperfectly perfect son.

Their impact on our lives is extraordinary, as Ian asks almost everyday “Are the boys coming today?” Our days change from week to week, based on all our schedules, their flexibility has helped to make this happen. Ian will wait at the door on the evenings he knows they are coming, he will have ideas in his mind of what he wants to play with them, matchbox cars, the wii, dagadars, magnetixs...sometimes he will leave the decision up to the boys regarding what to do but not often. From the first day Andrew and Logan, entered our home, they have been a wonderful part of our family and our village. They enter our home; talk and play with Ian, having just as much fun as he is. The laughter and screams of enjoyment are priceless. I know that Ian has touched their lives just as they have touched his. They are concerned when Ian is ill, and will send many texts to find out how he is feeling, wanting to know when they can come visit and see him, all the while being very respectful of when they have a cold to cancel so they won’t run the risk of Ian catching anything.

No, my little girl dream is not my reality, well not all of it...but my reality is wonderful. I’ve won the gift of love. The gift of giving. The gift of gratitude. The gift of a imperfectly perfect son and daughter. I’ve won the gift of the Friendship Circle as part of my normal. While at this time, we don’t do any other things with the Friendship Circle, I am fully aware of the rest of the benefits and all the other volunteers who help make those things happen. To all of the extraordinary volunteers at the Friendship Circle...the words THANK YOU are not enough or meaningful enough but those are the words that come to mind....THANK YOU.

As it has been said “Man plans, G-d laughs.” As I stand here tonight, a person, not a statistic, I know that, this time, G-d gave me the gift—along with my husband, Brian and our daughter, Becca and all those who are a part of our village - the gift of laughing with Him.”

A few recent pictures.


Rock Out

Our Surprise MCV

Monday, May 7, 2012

Pushy Parents

Proud to be a pushy parent....maybe, just maybe...once a diagnosis is found....we can do something to help others....or maybe we will become a WISER pushy parent...
http://journals.lww.com/neurologynow/Fulltext/2012/08020/Too_Rare_for_Research__People_with_rare_diseases.18.aspx