Tyranny

Of all Tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. Those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience.
Lewis, 1952

I have always had a fondness of C.S. Lewis, but the other day I saw this quote and nearly fell over. I'm not sure who, if anyone in particular, Lewis was thinking of as he wrote this, but I find it to capture the tyranny within the disability service system to a T.

I was once guilty of doing things "for the good" of the people I supported, I see people daily who are doing things "for the good" of people they support, and work within a system that does a heck of a lot "for the good" of those we support. And it's true, acts of oppression are carried out with the "approval" of the systems and individual consciences. We make ourselves feel better daily by believing it is "for the good," meanwhile the people we support are often railing against the system and the hundreds of things done daily to them "for the good."

What's difficult is that the system is there for good reason, people working within the system do care and wish to make a difference. I don't know anyone in this field I could classify as "evil," yet in pursuit of "better" lives for those we support, we often ignore their voices and their own choice of what a "better" life is. The people we support are isolated, lonely, bored and have thousands of frustrated ambitions, yet we can sleep soundly at night because we're doing it all "for their good."

Finding this quote reminded me not to get too comfortable, it reminded me to always ask if what I'm doing is "for the good," it reminded me that I should not be powerful, but be an ally in the pursuit of the chosen lives of those we support. I ask the rest of you, please consider your daily actions...are you tyrannizing someone with your good intentions?

Assumptions

Well it has been a while my friends, and I may be a little rusty, but here goes...

As I noted before, I have begun moonlighting as waitress. I love food and love people so I thought it would be something I'm good at, and it turns out I'm pretty right. I didn't realize how many valuable lessons I would learn.

Previous to waitressing myself, I suppose I had many assumptions about who was serving my meals. I assumed that as a server, most people were either college students working through school, or people who hadn't gone on to higher education and simply enjoyed the value of a good days work. Well, I was wrong. There are several traditional aged college students working at the restaurant, but just about everyone else already has a degree, some in the process of obtaining a master's, a few who already have a master's. I have quickly learned that just as the economy has pinched my budget, for others it has meant working full time as a server because good jobs are hard to find.

The people I work with are amazing, some down right brilliant. Many have travelled across the globe on various pursuits, others have incredible life stories. The people I work with are complete, whole, interesting and complex people just as I am. I have quickly learned though that when serving, the customer's rarely think about the complex person who is delivering their dessert.

I think through other posts, many of you will have figured out that I'm a pretty outgoing person, I love being around others and adore a little spotlight attention. Well, I have never felt invisible before, but as a server, one often does. Yes, many customers are very nice, several are regulars who have come to know the servers, but most barely look us in the eye. I don't expect to be discussing the meaning of life at work, I realize that at this second job, my function is to serve food and do it well, but am I not still the complex person I was before I put on the apron?

I look around at my coworkers, and feel sad that other's aren't taking the time to get know or even consider these amazing people as whole people! I charge all of you to think about it the next time you're out, Of course I wouldn't expect you to ask your server to sit down and join you, but remember...you just may be being served your seafood pomodoro by a warrior princess who is plotting to save the world!

"Double agent"

I have acquired a second job! My first job is awesome, and I think we are well compensated for our work-particularly as it is in human services, but no one will ever get rich in this field! With the economy the way that it is, our money just doesn't seem to stretch out quite enough, so I am now moonlighting as a waitress. I love it! The restaurant is amazing! The people are great! but this means I have less time for blogging. I will still post, and I have of course abandoned the blog for periods in the past. Keep your eyes peeled and I'll pop up at least a few times a week.

I'm attaching the link for the restaurant, you have to check it out, Chef Dato rocks! I highly recommend that if you are ever in the area you should stop by. You'll have the best meal ever!http://www.chefdato.com/tinlizzyabout.html

"Make the most of yourself..."

Savannah, my daughter, just started 4th grade on Monday. She was given a homework folder and on the back are a list of great quotes. I'd like to share them with you, my favorites indicated in blue.

Make the most of yourself, for that is all there is of you-
Ralph Waldo Emerson

Good character consists of knowing the good, desiring the good, and doing the good-
Thomas Lickona

Hate is like acid.It can damage the vessel in which it is stored as well as destroy the object on which it is poured- Ann Landers

People need to respect each other's concerns and differences. And frankly, there's far more in common than divides us- David Dinkins

Parents can only give advice or put kids on the right path, but the final forming of a person's character lies in their own hands- Ann Frank

Words can destroy. What we call each other ultimately becomes what we think of each other, and it matters- Jeane Kirkpatrick

Although the world is full of suffering, it is full also of overcoming it-
Helen Keller

We must use our lives to make the world a better place, not just acquire things-
Delores Huerta

To do good in the world, first you must know who you are and what gives meaning in your life- Paula P. Brownlee

This above all: to thine own self be true-
William Shakespeare

Do you have a favorite quote? Please share any really good ones, or pick your favorite from this list.

8th Graders and Heroin?

That's right, did you know there are 8th grade students who use heroin? I'm sure somewhere in my mind I understood this, but never really thought it was true and certainly not present in the quaint suburban schools where I live. Well today I learned that 8th graders can not only use heroin, but also transport it to school via their backpacks!

How do I know this nugget of information? Because my son who is still restricted to PG movies is in class with someone who was busted with heroin in her backpack! Of course, it was planted there (according to her).

My rather sad blog on Saturday was in reference to the schools decision to place my son (supposedly temporarily) in an "alternate" setting. What it boils down to is that they don't know what else to do because of that oh so scary label he carries. Up until his transition to middle school last year he did very well, with some help from me and teachers. At the middle school level he no longer had only one teacher throughout the day and because my requests for support for him had fallen on deaf ears, it was a difficult transition. Academically he still fared pretty well, but if you review a much earlier blog(seen, not heard) you may note that I was suddenly getting calls because he "laughed and moved around" in the lunch room.

So, now my son is at school with heroin using 8th graders and students who have attacked teachers...Tyler did very well today and is keeping his goal in mind, to get back to regular school as soon as possible. I'm doing everything I can to support him, meanwhile contemplating staking out the school to ensure that no illegal activity comes close to my son! OK, so I won't stake out the school and I know that Tyler is well educated and above those influences, but I have to wonder...What the hell were they thinking???!!!!!!

Not Today

Today I can not be a "warrior," not today.

My son is about to learn of the cruelty and hazy assumptions that sometimes rule our world, and there is nothing I can do about it. He has been characterized by a label and no matter what I say or how I say it I can not change their minds. He is going to have to be his own warrior and fight this battle for himself. I can not prove to them who he really is, only he can do that.

For the first time in his life I can not shield nor protect him from the view others have of mental illness. Right now, his school sees only THAT label, to them, at this moment he is nothing more and they are afraid of what they do not know. They have been blinded by their assumptions and no matter how much righteous indignation I can muster their assumptions, no matter how discriminatory, will not change. Only my precious son can do that.

Come tomorrow I have to explain to him what is happening, I will have to look at the hurt, disappointment and anger in his face and then will have to send him "out there" to conquer attitudes for himself. I have no choice but to be positive and strive to see the best in this, and somehow I have to show him the best in it too. I will have to stand behind him and cheer him forward but no longer can I wage on for him.

Today is a new day in my title as "mother," today will be a new day as my son is forced to be man. He can do this, I know he can...but how I wish he didn't have to, at least not today, not yet.

Today I got a gift

Today I was a given a gift from one of my favorite people. To show gratitude, he had purchased a book, but not just any book. He took the time to really consider who I am, and gave me a book that fit with that. He made a perfect selection and I am so excited that someone took the time to REALLY consider who I am. It's not often that people do that. That wasn't the best part of the gift though...

As he presented me with this thoughtfully selected treasure he took the time to explain it. He talked about who I am, and I'm pretty sure I heard the term "Warrior princess". I like that! That's a moniker I can really sink my teeth into, maybe next week I won't be fab anymore! It was a wonderful gift from another person who could describe how they see me, who I am( He did say more than just warrior princess-but boy that stuck out). It was a great gift to know that someone looked so deeply. That wasn't the best part of the gift though...

Inside the book was a card. The card was a beautiful one expressing gratitude, again within this card some virtues were noted, sincere appreciation expressed. It was as thoughtful and carefully selected as the book, as was the inscription within. It takes real time to do this, to pick the perfect card, write the perfect words and not a lot of people take that time these days. I felt pretty nice to know that someone, who didn't have to, had really considered me, took time out of their hectic, demanding schedule to really express that in some way I am important to another human being. That wasn't the best part of the gift though...

The best part of the gift was a word written inside the card. It was the word "friend." That is the gift I am most grateful for from this person and anyone else who bestows that title upon me. To be called friend and to have people I can call friend, that's a true blessing. Especially to have the friends I have been blessed with. I have a friend I admire and respect, a friend with knowledge and compassion and dedication. A friend who takes the time, and who is just one of several others who would give me time should I need it. I am called "friend, " that's the true gift.

"English Idol"

Tonight I was playing with my lovely 4 year old, Ashton (Little angel in pink). We were sitting outside swinging, when she started to talk about what life will be like when she grows up. She informed me that she wants to be a Mommy, she would like three children, two girls and one boy (hmmm, I have two girls, one boy). This prompted me to ask other questions, "Well do you just want to be a mommy, or would you like to do other things as well?" At this point she informed me that she will work at my job (I don't blame her, it's a great job!). I then asked if she will be married and what her husband will be like, at which time she stated "well, he'll be handsome and kinda bald" (she just described her dashing father- James dashing man in back). At this point I turned to her and exclaimed "Do you want to be me when you grow up?" "Yes," was her reply, "but my name will be Ashton!"

This conversation brought about memories of similar conversations with my son (Tyler, handsome young man on right), who used to say that I was the most beautiful woman on the planet and he would marry me when he grew up. He was of course very young, when he got old enough get the whole "Oedipus" thing, he would then say that when he got married, he and his wife would have to live right next door to me, and when he flew to the moon I would have to go with him as he couldn't bear to be too far away from me! Those days are long gone, he now refuses to be seen in public with me and proclaims to the world that his mom is the "biggest nerd ever!"

While I want all my children to be their own person, I realized this evening how precious it is to be "idolized" so. I will never be famous or have a fan club, yet have been (however temporary) an idol to the three most important people in the world to me. What a big job that is! But what a delightful responsibility. I realized tonight that while this type of adoration may be fleeting it is so precious, and I would like to believe indicative of the great relationship I enjoy with each of my kids. No, it's not always a day at the park, but they always know they are loved, they always have someone to play with or talk to, they always have a support system and are never belittled or humiliated. They get to see and hear me stand up for what I believe in, work hard, place value on education and most importantly in other human beings. So while they may not want to be me or want to be with me forever, I am so glad that for even an instant my kids can look at me and think "she's an OK lady" or "that's the kind of mom I want to be." I'm also pretty happy that my kids can look at my life and their own and see it's blessings.

This job did not come with a manual, and it's always hard, but tonight I am patting myself on the back and giving thanks to God and my husband and my mom, who have helped me to cherish and support my kids, to keep them safe and lift them up. So, I celebrate being an "English Idol" (I'm not originally from the U.S. so can't say American), and I celebrate the most amazing three gifts I have ever had!

*I chose to post a picture of my gorgeous family today (I've been hesitant to do so in the past) Don't pay attention to the date on the picture, we never reset it. By the way, little girl on left is my sweet Savannah.

"One Person"

One of my favorite quotes is "You may only be one person in the world but you can be the world to one person." I often say I hope to have some part in making a difference for at least one person, but you know I think the person affected most is...me.

Through my job, my family, all my big mouthed attempts at teaching people about human rights violations, the person most impacted is myself. Each time I meet someone new, whether it's a consultation at work or someone in my personal life, I walk away with so much from that contact than I ever give to the other person. I guess in that respect what I once thought was an honest pursuit of "saving the world" has always really been about me. I don't do it to be selfish, I rarely think about what I have to gain from the things I do (although I do beam when someone shares their appreciation- it does feel good!) I don't brag about it (except in those cases when someone has called me helpful, then I want everyone to know), I do love it though!

So many people have impacted my life, every day I walk away having learned something or having a richer life because of every experience. I do think I am lucky because I recognize these changes in my life, I am open to them, so many aren't and my heart breaks for them. What a fortunate person I am! I take away so much every day just from living! Maybe it's selfish, I don't know (really I do call myself FAB so there has to be something going on with my ego right?), but I don't want to ever stop.

So, I guess I 'm writing today to thank all of "one person" (s), who have made a world of difference in my life, and I'm writing in anticipation of the "one person" who will come along tomorrow, and the next day, and the day after that and...you get my drift. Maybe one day I will make a difference, but in the interim I think I'll keep doing what I'm doing because it sure works well for me!

Stealing a page from Mr. Hingsburger

Armed with an e-mail address and phone number for Ben Stiller, I have stolen a page from Dave and have written a letter which I already sent.

Dear Mr. Stiller,

I am writing with the hope that reaching out to you will mean reaching many others. I am of course writing in response to your film “Tropic Thunder.” I do believe that the words you use in the film were not meant to hurt; I do believe that, as you say, you were poking fun at self absorbed actors. Here is the problem, just because you don’t use those words to hurt doesn’t mean they hurt any less. People with intellectual disabilities are the last group of openly oppressed people in our country. Part of the problem is that people don’t “think” about the words they use, the ways in which disability is characterized because they don’t give people with ID/DD a thought. The problem with this is that people with ID/DD can then become a target for people who would categorize them as somehow “less than human,” “less than us.”

Did you know that people with disabilities are abused at alarming rates? Some statistics reflect that 90% of the population of people with intellectual disabilities are abused. This is able to happen so frequently because of how disability is characterized across the globe. I am certain that with this information you would rather do something to stop it rather than inadvertently encourage it. Again, I know that hurt was not your intent however, you must be aware that now teenage boys will have new phrases to brandish as weapons against fellow man. “Full r****d” is already being used, and it will only get worse as more people see the film.

Furthermore, are you aware that about 75% of infants with Down syndrome are aborted before they even get a chance at life? I am sure you can see how this might make Mathew McConaughey’s statement in the film "Well, at least you still have a choice. I'm stuck with mine,” more than a little offensive. You see, there is a belief out there that people with ID/DD have less value than those of us who are typically developed. If you don’t believe me, read about Tracy Latimer, Brent Martin, or Danieal Kelly. Sometimes we are still not much better than the Nazi’s and their t-4 program, and we certainly have only come so far since the eugenics movement and forced sterilizations.

I write this letter to ask you to become educated and perhaps, in turn, educate others. I would also like to thank you in a way. Because of your movie, people are speaking out, self advocates are given the opportunity to stand up for themselves and say “enough!” Maybe, because of that, in a few more years we won’t have to have conversations like this any more.
************************************************************************************
If you would like to do the same, here is how:
You can call Ben Stiller and leave him a message at 323-602-5000 contact@dreamworksfansite.com.
DreamWorks SKG Studio DreamWorks SKG 1000 Flower Street Glendale, CA 91201 Tel. (818)-695-5000

Take a look at the protests! http://www.cnn.com/2008/SHOWBI...

Boycot Viacom

Viacom owns Paramount and Dreamworks, responsible for the film Tropic Thunder. I am personally going to boycot thier brands, and thought I would share the list if anyone is ineterested. You can also e-mail Viacom at http://www.viacom.com/contact/Pages/default.aspx
or sign a petition at ,http://www.ipetitions.com/petition/stopTropicThunder/.
Viacom Brands
MEDIA NETWORKS
BET NETWORKS
BET
BET J
MTV NETWORKS
ATOMFILMS
ADDICTINGGAMES
CMT
COMEDY CENTRAL
GAMETRAILERS
HARMONIX
LOGO
MTV
MTV2
MTVN INTERNATIONAL
MTVU
MTV TR3S
NEOPETS
NICKELODEON - NICK JR.
NICK AT NITE
NOGGIN
PARENTSCONNECT
QUIZILLA
RHAPSODY
SHOCKWAVE
SPIKE TV
THE N
TV LAND
VH1
VH1 CLASSIC
VH1 SOUL
VIRTUAL WORLDS
XFIRE
FILMED ENTERTAINMENT
PARAMOUNT PICTURES CORP
PARAMOUNT PICTURES
DREAMWORKS STUDIOS
PARAMOUNT VANTAGE
MTV FILMS
NICKELODEON MOVIES
HOME ENTERTAINMENT
GLOBAL REACH
BRAND INDEX

Please participate in any way you can, it only takes one voice to inspire change but imagine what can be done with thousands!

Speak up against dysphobia!

http://davehingsburger.blogspot.com/

Please visit Dave Hingsburger's blog today. He has written a letter to Ben Stiller regarding his movie "Tropic Thunder." I ask you all to get involved, I will be writing my share of letters and asking some of my friends to do the same. If you or someone you know has a developmental disability, please stand up and speak out. Words after all are only the beginning...that's how the holocaust started.

2300

I mentioned earlier this week that I was at a conference. It was the National Autism Conference to be exact. When this conference first began some 12 years ago, there were 300 people in attendance, this year there were 2300. It was a sea of expectant faces, some professionals, educators, parents, children and adults with autism and Behavior Analysts abounded. This year was the conferences largest to date, some people had come from across the globe to hear the latest and greatest in autism research, education and "behavior" techniques.

Care worn faces of parents were everywhere. I realized early on that I had stepped into an almost alternate universe, it is a culture in an of itself. Parents are surrounded by people who bow at the altar of Skinner, words like "shaping," "extinction," and "molding" have become a part of their daily vernacular. Appointments with OT, PT, speech and behavior have become a routine part of life. Gluten free diets, chelation therapy, gamma globulin injections and other medical approaches are offered up on the menu of "hopes." I marveled at the courage and determination within many families, particularly astonished by the children who are whisked into a world where others try to mold them into someone new. They patiently abide the rules of this alternate universe and I imagine hope for a day when no one wishes to "mold" them any longer.

There were some small whispers of "cure," but mostly I observed a crusade to understand. The sea of 2300 faces held the frustration, hopes and heartbreak of some, the "expertise" of others, and the bewildered. I'm still not sure what I have taken away from this experience. I picked up a few things, but overall it felt sad. Rather than working toward transforming a cold an misunderstanding world, it seems that instead many in this army of 2300 wished to transform these children. And I'm just not sure what I think about it. All week I heard about approaches and treatment aimed at transformation, but didn't hear about the feelings and needs of people with autism. I know that each parent there cares about their children's feelings, I'm not insinuating that they don't, it's just not something I heard about during all the conversations about "behavior."

If you're reading this and have some thoughts, please post them. I feel like I'm missing some piece of information which will transform this "mystery" universe (from my perspective) into something that I understand. Please know that this blog is not meant to offend, and I apologize if it has presented anyone with anger, but if you are offended please let me know. Perhaps through your anger I can glean a new understanding.

"I hope she dies before me"

Let me begin with an apology...I have not abandoned my blog, but am away at a conference, and the room I'm in does not have an internet connection (In today's age can you even believe it?). So today has been my first opportunity to make it to a "hot zone"

On Sunday morning I got up and turned on the TV as I sipped my coffee before heading to church. A movie I had not seen before was on, "Autism: The Musical." I have always meant to see it but never had the chance. I can't say I was really watching it as I had other things I needed to do, but paid attention to what people were saying in the film as I went about my business, fully intending to catch the movie in it's entirety another time. Then I heard a mother talk about her daughter. She spoke about how people don't see her value, about what needs to happen so that people will see her value, I was about to stand up and shout "Amen!" when her next sentence stopped me in my tracks. She said "I hope she dies before I do."

I have heard words like these before, I have actually seen elderly parents at their son's funeral grieving, but relieved because now they didn't have to worry. These used to be sentiments I could not understand. When I heard parents of the people I worked with say these things, in my mind it was monstrous. Oh how I have grown since then. Parents who say this don't do so because they don't respect their child or their right to live, they don't say It because they are tired and want a break, they don't say it because they are monsters. They say it because they see the world, cold, cruel and unforgiving and are gripped with the fear that after they are gone there will be no one else to support, protect, love, advocate...

Most parents can't picture a day when they might feel this way. I myself think of my children's future and am filled with hope. I speculate that after I am long gone they will carry on some family traditions, pass on some of my spunk, they will be successful and loved and live big lives full of love and adventure. Whatever challenges my kids face now or when I am gone, they are not living in a world that doesn't accept them, value them, or see them as full human beings. Yes, it is difficult for many of us to imagine wishing our children dead before us, it seems unnatural and out of the natural order. While the parents who do have these thoughts about their children with disabilities are loving parents too, the rest of the world doesn't facilitate ease of mind for these parents. I can not pretend to know this fear, I can not pretend to completely understand, but I have learned that I can not judge. I have also learned that I and others need to keep working to change the world, so that someday no parent has to wish their child's end might come before their own!

I Love my Job!

Today was one of those days that is usually followed by my return to the office exclaiming "I love my job!" Today I didn't get back to the office as I was away in Harrisburg, so instead of proclaiming it to the office I'm doing it here. Because I can, because this is my blog!

Today was a statewide meeting that I generally enjoy attending, today was even better than usual. There is something really exciting that happens when there are tons of like-minded people together talking about change! We heard several great presentations, examples of what people are doing to promote safety, equality, voices. The goal in mind is simple, nothing extravagant, nothing over the top, it's about ensuring an everyday meaningful life for everyone. Today we heard about how it's being accomplished for kids, for people who access behavioral supports, for people with developmental disabilities. Today was about sharing ideas, sharing resources, sharing best practices that make sense for everyone. People are doing really great work, creating new ways of support, the best ideas are coming from the people who ask for that support and ya know what? Some people are actually listening!

Today I was joined by someone who has made change happen, who stopped and listened, who considered a new way. She is someone who until 18 months ago I had never met, yet today she and the people she works with and the person she supports have become an inspiration to myself and others. They are group of people rallied together to make a difference, they already have and I have been so lucky to have had a small part in it. This group of people and particularly the person they support are in my mind every day. From them and with them I have learned valuable life changing lessons, I have enjoyed a partnership which resulted in a changed life and a new perspective for so many. Today I sat in awe as this young woman wrestled back her nerves to tell the story that has become so important to us all. I felt admiration, excitement and wonder at how far we can come and what it can mean to one or many.

I am so lucky that I get to take part in any of this, that I get to witness it or sometimes can even say "hey I had something to do with that." I FREAKIN LOVE MY JOB!!!!!

Today I write...

Today I write for therapeutic reasons. typically, I write because some idea or thought hits me and I just like to get it out there. I do find it to be reassuring somehow that others share those same thoughts or appreciate the idea as kooky as my thoughts may be sometimes. Sometimes I write because I'm hoping to be the spring, to motivate someone to think about things differently. Even if no one reads it, I at least know I've put it out there in the "blogosphere" and that is gratifying enough for me. Sometimes I write because I'm grateful, happy or inspired and just want to capture it for a moment.

I write for many reasons, usually I'm perky, optimistic, sunshiny even. I find life to be wondrous and would usually rather consider the sunny side of things. Even when I'm spouting about some injustice or which corporation or country I'm "mad at" this time for lack of regard for humanity, I'm still hopeful. Today, that's not why.

Today I write because at this moment I don't feel any of those things. Today I feel frustrated, stuck in this moment, I feel the brick in my belly and I write to purge myself of it. Even an optimist has a bad day I guess, and I suppose today I write because I don't want to feel alone in my bad day. When I'm happy (which really is 99% of the time) I want to share that joy, but like the saying goes "misery loves company" so I guess I also want to know that others have those bad days too.

Today I write so that I can remind myself of all the things I usually say...you choose your attitude, without pain we can't appreciate joy, there is always a lesson...
I write because in this moment I'm working on a lesson in patience, patience with myself, with God, patience in waiting for the attitude, the joy, the lesson. It's coming, I know it is and this moment will pass, I just have to hang in there.

Thanks for hanging in there with me, for reading these ( really depressing) words, for knowing that tomorrow it will be better, but please go read something sunny now, cause today this just ain't it!

Angels

Another guest blog from Curly at LiveStrong

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Today was a really long and terrific day. This morning we listened to Stephanie Spielman. She is a 3 time breast cancer survivor. Her Husband Chris, is a very famous football player. During her illness he gave up playing football for a year to take care of her. She stated that when she was diagnosed her entire family was diagnosed. This was not her problem alone to share. Her husband, children, parents , and friends were also diagnosed with her cancer. So far her foundation has raised millions of dollars for cancer research and for those who are in need.

I then went to my classes for the day. Watch out Patch team! I learned a lot today that we are going to be using for our conference. I could be dangerous!

From there I went to the zoo. It was a really nice a peaceful tri and I took lots of pictures. Sorry Brian, I didn't get to see the monkeys, but I did touch a starfish!

So the most memorable person I met today was Jonny Imerman. At age 26 he was diagnosed with cancer. He stated while he was receiving his chemo treatment he saw a lot of people that did have the same kind of support that he did. He decided to change that. He started Imerman Angels. They are a non-profit located in Chicago that matches a person who has been diagnosed with cancer with a person who has survived that exact same cancer. That person is now a support, advocate, and free resource for patient. He is terrific. He speaks so openly and honestly. I may like him as much as my soulmate. It could be a close competition! His goal is that every person who is diagnosed will have a match. If you get a chance go to his website: http://www.imermanangels.org

Tomorrow is our final event and then I will leave around 1pm. I can't wait to get home to all of you, but I must say I will miss this new family.

Do you know...

Jack? If you get a chance please go to www.youtube.com/LivestrongJack . I promise it is worth it. His mother is one of my advisors.


This morning I went to the Keynote with Dr. Richard Carmona, 17th Surgeon General of the United States. He was a Great Speaker. His general message was about prevention.

Then I went to my breakout sessions on advocacy. The first presenter was the Co-founder of Grassroots Solutions, Dan Kramer. He spoke about how to get more people involved in your cause.

Then we spent sometime practicing what it would be like to speak about your cause with government officials. They broke us up into groups of two and then we had to do a mock presentation to a "Senator". Currently my group is in second place. Who knew I had the gift of gab? (Stop Laughing!)

The evening session was given by Dr. Harold Freeman. He is the founder of the Ralph Lauren Cancer Center in Harlem, NY. Dr. Freeman has been a physician for 41 years. He said he had the option to practice anywhere in the country. He chose Harlem because he thinks it is wrong that people are not given the treatment they deserve because of their status. He was one of those people that you could just sit in a room with for hours and listen to him talk.

The main thing I learned today was that everyone has a story. Every person "knows" cancer.

Jeff from Maine, was diagnosed with breast cancer and is a 4 year survivor.

Hank from Ohio, has head and neck cancer and is a 2 year survivor.

Gloria from Chicago, (who works with people that have FAS) is a 10 year breast cancer survivor.

Nicki from Washington, her mother is a 2 year colon cancer survivor.

Lynn from Nashville, has a son who lost his battle with cancer, but has a mother and sister who is fighting it.


Being here makes me grateful for my health and for those I love. Each day is precious.
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This was another guest blog from Curly. Thanks Curly for sharing your experience at LiveStrong!

LiveStrong

Today I would like to have a "guest blogger." My wise guardian, who some of you may know as "Curly" is currently in Columbus at the LiveStrong summit. She sent us all an e-mail today to tell us how things are going and I was so excited that I asked if I could post it here. She has graciously agreed, so following is Curly's adventure!

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Hi all-

I am going to try to write you a note everyday. This is such a powerful experience, that I want all of you to be able to share it with me. I had a wonderful trip out here and that little GPS is just so smart! It tends to panic a little when I pull into Wendy's for my beloved diet Pepsi suggesting that I make a U-turn at the next possible moment, but I guess it is just going to have to get used to my caffeine needs!

The first thing I did today was to check into my hotel, which is lovely. Then we took buses over to the capital building and registered for the conference. As part of registration we were given yellow liveStrong t-shirts. 1000 people entered the building in clothes of many colors...1000 people exited as soldiers in the fight against cancer wearing there battle clothes. From there we went to Ohio State. While boarding the bus I overheard a woman speaking about her father who had died several weeks ago, only 8 weeks after his diagnosis. She wasn't sad, but there was a look on her face of determination and pride. She was explaining that though he had lost his battle he had fought hard each step of the way and even during his last breath, he was fighting. The stories here are not one of pity, no one wants you to feel bad for them because there is something growing inside their body trying to kill them. The stories here are of strength and hope and survivorship.

I got to the Presidential Town hall early and pretty much had the pick of the seats. For some reason, I thought of "Fab" and how during every training she rushes to sit in the front row, I thought I would do that too. As it turns out I made it into the 2nd row about 20 feet from Lance and Sen.. McCain and directly across from the press corp. I spent 3 hours surrounded by 15 photographers and their very high powered lenses. Imagine my delight! I wasn't allowed to take any pictures today due to security, but I promise I will try my best to take some tomorrow. Speaking of security...the secret service is pretty tough. I am thinking that all of them could kick my ass, so I stayed in my seat and tried not to cause any trouble.

The program began and we had several speakers from the university and the Lance Armstrong foundation, then our host for the evening Paula Zahn came out and shared her story of Cancer. In 1983, weeks apart her parents were diagnosed with cancer. 6 months later her sister-in-law was diagnosed. Her mother is a double mastectomy survivor, here father and sister-in-law lost their battles.

Next was Lance Armstrong (No Kate Hudson was not there). He got a standing ovation. Lance has some key phrases that I think can apply to about anything..."Knowledge is power" and "Attitude is everything". Lance stated that we picked this fight against cancer in 1971 when Richard Nixon created the National Cancer Institute which receives about 5 billion dollars in funding every year. The tobacco companies spend 15 billion dollars a year on marketing. BILLION! Seems kind of off balance. Lance also stated that 1500 people die each day of cancer and 1/3 of those deaths are preventable. Lance was a terrific and passionate speaker.

The next part was a Q and A session between Paula, Lance and Sen. Mccain. I tried to write down all of them, but things were moving faster then my pen could go. Here is what I captured.

Lance: What does Sen. McCain do to keep fit?
McCain: I like to hike swim and do light exercises. 2 years ago the Senator and his son hiked from rim to rim of the Grand Canyon.

Paula: Would you support the increase of a Federal tax on tobacco?
McCain: He does not think that he would. He is not sure that the extra money that would be raised would go towards cancer and tobacco prevention. He stated that many years ago he supported a bill to increase the taxes on tobacco with money to go to the states for education and prevention. He stated that currently not one state uses that money for what it was intended. He also mentioned that he believes that some members of congress are guided by special interests and that until congress is cleaned up he would not support a bill like that.

Paula: What are members of congress afraid of in going up against tobacco companies?
McCain: I'm not sure it is fear, I think certain members of congress are rewarded by tobacco companies.

Paula: How does that happen?
McCain: There are many ways.

Lance: For the past three years the current administration has shrunk the budget for the National Cancer Institute, will you increase or decrease the budget?
McCain: Increase, but I cannot give you a number in which I can increase it by. What I will tell you is that I will decrease pork-barrel spending and that money will go to important things like cancer research.



Well, I guess this was bigger then just a quick note. Have a great day and a wonderful weekend.
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Thanks Curly!
To see the LiveStrong blog click the link below.
http://livestrongblog.org/2008/07/14/senator-mccain-to-address-livestrong-summit/

Adventures in Babysitting?

Babysit is defined in Webster's Dictionary as: to care for children usually during a short absence of the parents. I point this out because I recently became very angry while reading People magazine. The magazine of course had an article about the new arrival of Brad Pitt and Angelia Joli's twins. Being as fascinated as everyone else with this beautiful couple and their large family I was intrigued and couldn't help but read the article. Someone described having seen Angelina with her children, and said that you could just see that she was a good mother. Then some actor (I believe it was Morgan Freeman- but don't quote me on that) addressed seeing Brad with the kids while Angelina was shooting a film, and actually described it as babysitting! Listen it's not babysitting when they are your kids!

This happened to my husband several years ago. Our youngest, Ashton was still so small she was in a baby carrier and James took her and the older two kids out and stopped by a video rental place to let the kids pick some movies. While there, the young lady at the counter of course oohed and ahhd at our beautifully kids, then asked my husband why he was babysitting. James, being the wonderful man that he is was offended and he replied to the young woman that they were his children! I have found that we often do this. When a mother is with her children people consider that she is quite simply doing her job, yet when a father does the same thing it's considered babysitting? What a sexist way of looking at family life!

I know, we're getting better at it these days, but still we've got a ways to go. Generally, society does see the role of "caretaker" as that of the mother, but why? Sometimes, women are the most shocked when it comes to this brave new world of father caretakers. My beloved James gets the kids ready for school every morning because I have usually left for work, often if one of the kids gets sick during the work day he leaves work to pick them up and he'll take them to the doctor! When other women hear this, they often become weak in the knees and proclaim my husband to be some sort of super dad. He is a super dad, he is a super husband, he is a what a man, yet he and I get irritated with all the fuss! He only does what a parent should be doing! I am grateful for the incredible PARTNER I have in my husband, I am grateful that he is such a great dad and that we share such an equal, respectful relationship. I would never demean him or his relationship with our kids by implying that his time spent with them is simply "babysitting" in my absence! I wish other's would be as respectful of his relationship with our kids!

So, for all my fellow mother's out there, it's OK to be grateful for having a great husband and hopefully you let each other know how much you are appreciated, but whatever you do, please don't ask him to "babysit," and if someone else calls it that please pull out the dictionary and explain what that word really means!

Humor

The last few blogs I have composed have been fairly serious, I wouldn't want anyone to think that I'm a stick in the mud or too worried about the world's injustice to have fun. The truth is humor is the best medicine!

I love to laugh, sometimes it's an awful laugh. I have, on many occasions, laughed so hard that I snorted, at other times I almost cackle and know I pull some very strange faces! I used to worry about my laugh and smile because when I do smile I reveal entirely too many gums. I used to get teased about it, and would try to smile with my mouth closed. Now, I don't even think about. It feels so good to smile, laugh, snort, squeal, etc...and ya know what? It's contagious! Try not to laugh along when you're with someone who is laughing a deep uproarious belly laugh...it can't be done!

Part of what makes my job so great is that we all laugh together, frequently...it would be almost impossible not to with our wise guardian, who I swear in another life may have been a stand up comedian. She truly has the quickest wit of almost anyone I know and absolutely lights up a room. The rest of us can't help but feel good around her, and the humor spreads.

My life with James and my kids is filled with jokes and fun, it brings us closer and is common ground for all of us. Did you know that the average 4 year old laughs something like 400 times a day, while the average adult laughs like 15? Well guess what, I have a 4 year old and just about every time she laughs I'm right there with her...who cares about crows feet and laugh lines, I truly believe that people who laugh often live longer! ( I am guilty of lathering on several creams to prevent the lines...I mean why have them if I don't have to?)

Humor is also very therapeutic. Have you ever cried and snotted all over yourself, felt miserable then someone close to you does or says something that makes you laugh, isn't it wonderful? "My favorite emotion is laughter through tears," said Olympia Dukakis' character in Steel Magnolia's (By the way, that is one of my favorite movie scenes ever...Sally Fields is pure genius at that moment...but I digress). Humor has the power to heal, and a positive attitude gets us way further than anger and frustration.

So, remember not to take yourself too seriously, don't be afraid to be foolish here and there, and try to laugh like a four year old...

Why I like being a pain in the @#$

I sometimes have the habit of driving other's to frustration. Some people laugh, "Oh that's Cheryl, it's just how she is," others, like my beloved father-in-law love to get me started so to speak just to enjoy a fun debate. While I can laugh at myself, it is also something I take very seriously. You see, what is so distressing to some is my inability to keep my mouth shut on issues of social justice, violence, human rights violations etc...But I'm glad I make people uncomfortable. I once heard someone describe themselves as the broken spring in a La-z-boy. eventually that spring becomes so uncomfortable that the person sitting in it just has to move. I will gladly be that spring as well!

I don't want to live my life cocooned with comfort and safety without being aware that there are many within our human family who aren't safe, who have been stripped of their personal power or basic human needs. I don't think it's OK for me or anyone to turn a blind eye because such issues make us uncomfortable. Dr. Sandra Bloom said "Hate is hate and it is infectious, and it influences action. Our influence upon each other is startlingly powerful. We can all bear witness to this responsibility by responding negatively to racist comments, sexists jokes, any remarks that are designed to hurt or humiliate others." (I would add the r word very specifically to that list). She also points out that "As bystanders become increasingly passive in the face of abusive behavior" the perpetrators become more abusive and more difficult to stop. There is abuse and violence everywhere yet most of us don't talk about it, don't want to think about it, or blame it on the victim. I ask you, how is a child at fault for the abuse inflicted by his or her parents? How are women at fault in countries where they are oppressed, raped, beaten and stripped of their voices? I also ask you, aren't we as much to blame when we stand back as "innocent" bystanders and do not act, do not speak up, do not give another's suffering more than a moments thought?

Bloom reminds us in her book "Creating Sanctuary" of the story of Kitty Genovese who was brutally murdered while "38 of her neighbors watched from their apartment windows." The attack in March 1964 took place in New York, and while it lasted over half an hour, her neighbors watched and failed to call the police until Kitty was dead. We are as guilty as those neighbors when we knowingly remain passive as children starve or are denied access to medical care, as people with disabilities are excluded and oppressed, as women are stripped of their dignity. This list is just the beginning of what we allow to happen within our country, let alone the atrocities carried out around the globe. Melville said "We may have civilized bodies and yet barbarous souls. We are blind to the real sights of the world; deaf to it's voice; and dead to it's death. And not till we know that one grief outweighs ten thousand joys will we become what (God) is trying to make us."

I know it seems overwhelming. We are faced with so much when we begin to pay attention that it threatens to swallow us whole, but making a difference really only requires a small amount of action. The only you thing you need to make a difference is your voice. Speak up, don't be a passive bystander, don't allow people to joke at the expense of an entire group of people. Stand up and say something! Did you know that in the countries where Jewish people were highly valued by society during WWII there were fewer Jews killed? However, in the nations where Jews were devalued and anti-semitism was at it's highest were the countries in which most Jews were killed? awareness and value for all human life can truly make a difference, can actually save a life.

So, I will continue to be that spring in the La-z-boy if that's what it takes, and I'll continue to enjoy being a pain the ass...Won't you join me?

Grace

For today's blog I'm borrowing a concept mentioned by Dave Hingsburger yesterday. He noted the people who might make comments (from their own superior attitude) such as "there but by the Grace of God..." when challenged by their own discomfort with disability or difference of any kind. I thought a lot about this, as I frequently try to remind everyone that we are all fabulous and deserving. It's actually the concept of Grace which exemplifies this! Those people who would try to use God's Grace as some divine vehicle by which they can feel "better" than someone else in some way, clearly don't understand what Grace truly is. As outlined in The Book of Common Prayer "Grace is God's favor towards (all of) us, by Grace God enlightens our minds, stirs our hearts, and strengthens our wills." Grace is God's love for us AS WE ARE, AS HE MADE US, whether that be non-disabled, or with other abilities.

I apologize to anyone who is not particularly religious, or anyone who believes something different from I. I understand my tone is rather spiritual in nature but it is not meant to exclude anyone, on the contrary, I hope to include everyone. The truth is we are each made the way we are for a reason. We each have faults (and let me clarify that having a disability is not a fault- gluttony, envy, pride, leaving the toilet seat up-those are faults), we also each have glorious gifts wherever you or I believe we receive those gifts, they are inherent in each of us none the less. Each person's gifts differ from the next, though often our faults are similar. Each of us truly are FABULOUS, and it is in that beauty that we should be relating to others, not through some sense of pity.

I heard about a man in the Pittsburgh area who visits the hospitals to bid congratulations to new parents. Congratulating a new parent is not a new concept, however he is congratulating new parents of kids with Down's syndrome, as he and all of us should. We should welcome all life, each new beautiful human being. This man does this because he has a daughter with DS and when she was born people looked on he and his wife with pity. How sad that people could be welcoming their newborn and people feel bad for them, or say things like "there but for the grace of God..." IT IS THE GRACE OF GOD THAT GIVES US OUR CHILDREN AS THEY ARE, THAT"S HOW HE MADE THEM! Fabulous through his grace!

So please, please just knock it off ! Stop feeling "sorry" for other's with different abilities or lives from your own, the only person you are appeasing is yourself when you do this, and you're not going to earn your way into God's heart by looking down on someone beautiful that He made.

Full Circle

A few years ago I had the opportunity to be trained by one of my favorite people and a great mentor in facilitating a biographical timeline. (If you are interested in this and want more info. visit www.Dimagine.com and look for the article "Who holds your story?") Anyway, it's an incredible tool and I have had some of the most amazing professional and personal experiences because of it. I have had the opportunity to take incredible, inspiring and sometimes heartbreaking journey's and at least one of those experiences helped to make another person's life better, how fabulous is that?

For two days now I was back with my favorite mentor and some of the other people most dear to me. We began the same journey of those few years ago, except that this time I had the opportunity to assist in sharing what I have learned and help other's begin to learn this tool. What a great gift we shared! Not only did I now get to work side by side with a person who has affected my work and my life with inspiration and experience, but I got to share that experience with my best friends and co-workers, and inspire other's to use this tool and in so doing affect real change! By the end of today as I was exhausted though exhilarated, I looked around the room and saw some faces of people who were truly impacted and ready to begin this journey for themselves! How amazing is that? Two years ago I was excited at the prospect of being helpful to some, and I have, but now that experience has helped to inform others who now hope to do the same. So, I now played some small part in the prospect of being helpful to many. I have somehow come full circle and it is magical. I sometimes marvel at how truly fortunate I am. I hope that all who read this can experience this same level of...WHOA!


Note-Shameless Plug- http://www.beadforlife.org/ Please vist this site. It is an organization working toward ending poverty by helping women in Uganda work, and in the process make beautiful and unique jewelry. I ask every woman who reads this to at least visit and learn about what you can do to help our sister's accomplish thier dreams. I ask every man to buy a necklace for a woman they love!

Evening at the park

OK my darlings, it's been a few days and I feel like writing, but I'm not sure I have whole lot to say today. I would like to report that I had a lovely evening with my oldest daughter at the park. While she is my oldest daughter, she is the middle child and with her older brother being the attention getter that he is and my youngest daughter being four, Savannah very often finds herself waiting for her own turn. So tonight we went to a local park together,just the two of us, we strolled and took in historic sights then my daughter played on the playground as I watched on. While we were there another little girl went charging over to Savannah and was very interested in what she was doing, they started jabbering away (Savannah is very much like me in that she is a social butterfly-she makes a new friend wherever she goes). Savannah and the other girl, whose name I learned was Mackenzie, jumped around and played, talked and looked at the clouds while I and Mackenzie's mother watched on.

Just before we left Mackenzie came over and began to talk to me. I would guess by her size that she was about 7 or 8, she had bright blue eye's and was full of interest in me and Savannah, when she spoke to me I realized there was something familiar about the way she spoke and the things she said were interesting, though not what I am used to hearing from most kids. I realized that she had autism -not that a person's label is important, and Mackenzie was far more than any label- but I recognized why her mother watched so closely and why every now then she had gone closer to offer Mackenzie prompts. Savannah, my lovely daughter never batted an eyelash, she played with Mackenzie and even followed her somewhat bossy commands without complaining, asking to leave or joining other children instead. When we left the park she never said a thing about it, just that Mackenzie was nice. Now I know that Savannah "knows," but she didn't need to talk about it, or hide with the other kids, she just went about her business and made a new friend and that was that. Maybe she's better at accepting others than I, she never said a word, but I've just come home and blogged about a little girl because she has autism. I'm proud that my daughter is who she is and that she loves everyone without thought or concern for her own "reputation," I hope I and other's can grow to be more like her. What a cool kid I have!

Terror at a local school

The other night I heard a snippet on the local news which caught my interest. I was on my way to bed but stopped in my tracks when I heard a story about a girl's family suing a local school. The suit is being pursued because the 14 yr old girl and four other's were sexually assaulted repeatedly, yet when they informed the school the boy they accused was asked to apologize and received a three day suspension. He later violently raped the girls, even leaving a blood smeared hand print as a "trophy" in the stairwell where he committed the act. The hand print remained for several days and was still there when he dragged the girl who is suing by her hair into the same stairwell and raped her as well.

At this point the boy has been charged, but as I listened to the story I was baffled as to why school officials had not acted sooner after initial reports...then I heard it, the brief mention at the end of the report that all five survivors are girls enrolled in the school's special education program. Immediately I was angered as the realization hit me that the school didn't act because it questioned the "credibility" of the girls. This may or may not be the case, but for me it rings true. The girls were in essence asked to hush as the school swept the incident under the carpet.

After seeing this, and hearing of earlier attacks in local schools I am increasingly concerned about what is happening in what should be a safe environment. I am concerned that schools are not being proactive, they are not acting when there is a problem. I would like to know that at my children's schools students are not only being taught about math and history, but they are also being taught about diversity, acceptance, personal power and how to report problems. I know for a fact that at the school my children attend these issues have never been addressed as they might apply to all students. Well I'm mad, and I'm worried and I have a BIG mouth! So between now and the new school year they are going to hear from me and every student and parent I can rally to join me to ensure that starting now the school's really start working toward inclusion and safety above all else! I encourage you to contact your own schools, find a list of local resources where you can refer them for support and then don't let it drop! If schools are proactive and promote safety and awareness these things can be prevented. If students are educated they can protect themselves and others, and perhaps think twice before hurting a fellow student.
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To read about this story visit the link below.

http://www.post-gazette.com/pg/08183/893901-52.stm

When the student is ready....

In the past year I had a professor who quoted to me several times "when the student is ready, the teacher will come." She turned out to be one heck of a teacher. I realize how lucky I am to have had so many amazing people who have come in and out of my life who have inspired me, taught me a lesson however large or small, and somehow impacted me for the better.

I think the first time this happened was when I was very young. His name was Ron Tucker and he was my oboe instructor. He was passionate about his music, kind and inspiring. He was a great male role model when I needed one, and his passion for what he did inspired me to always strive to do something I was passionate about. Long ago that was music, my dream was to be a classical musician living in a loft in New York, eventually that dream transformed into something very different yet I'm still as passionate about my work as Ron was about his oboe and bassoon. Each time I hear Ravel or the notes from Sheherazade, I'm reminded of that passion.

I didn't feel that way again about a teacher for a very long time. Not until much later when I was working direct support and sent to a training. From that moment on, I was inspired to do something, to change my approach. Later, from this same teacher I learned not only about what I wanted to be professionally, but I also learned how to be a better mother, friend, lover, daughter etc...I am forever grateful to Guy who taught me these things.

I have always wanted to travel the world, in my younger idealistic days I would travel abroad and make a difference. After having children I though this would never happen, yet I met a professor, Dr. P, who has stirred in me the desire to follow my heart even if it is abroad, and through him I have learned that it is possible, children or not. He's a great man doing great things and I like so many other's have had the opportunity to see and hear his passion for what he believes in.

I had a professor earlier this year, Dr. B, who made such a difference for me that I returned to the Church, I opened my eyes and my heart and followed it home, and without her I think it would have taken a lot longer.

I've also had teacher's in people who don't necessarily carry the title. My son has taught me some of the most powerful lesson's I believe I will ever learn. My mother, my daughter's, my husband they all help me learn and grow each day. My friends, my co worker's, my wise guardian and fierce leader, they all teach me on an on-going basis.

I have been so fortunate in my life to have had so many great mentor's, teacher's and friends. But I think those lesson's surround us, they always there, waiting to be learned but we have to be ready. So I guess, really I'm fortunate that not only did all these great people come into my life, but that I was somehow ready for the lessons they needed to teach me.

Open your heart and your mind to the world around you, pay attention and soak it all in! You may not realize it at the time, but when you are ready, your teacher will come.

Shanked

Today is another not so hot day- I feel just plain cruddy, but I'm not whining.



After an amuzing e-mail conversation with my wise guadian today, I have been struck by some responses to those strangers who inquire about my gait. (After today I won't whine anymore).

So here goes, when strangers ask "what happened to you?" I could respond with:



I was shanked in the leg while in prison,



Old war injury, shrapnil is still in there



Football injury, ruined my pro career



I'm drunk



You're drunk, I'm walking fine



Shark attack while swimming in lake Erie



Just got off my horse, he's parked around the corner



I injured it practicing the karma sutra



Parenting is rough



Ya know that magic trick where the magician traps you in a box and saws you in half?



When was the last time you had sex?



Sarcasm is funny! I know all these responses are rude and definitely not non-violent,but sometimes it would be nice to respond to rude questions with a rude comeback. Okay, I'm done with that now, I promise tomorrow I'll be back to my perky and empathetic self!

Bad Day

I had a rough weekend. It started with going to pick up my car which cost significantly more than I had hoped, there went my son's birthday party and season tickets to the local amusement park...but I had my car back, and she was running smoothly, thank you Bill the mechanic! As depressing as that expense was, I usually don't let things get me down...but then my leg decided to do it's best impression of a sausage! My right leg and foot are horribly swollen and tight, I attribute it to the psoriatic arthritis. I went to the urgent care facility nearby and while waiting there I saw an older woman come in. I believe she had probably fallen as she was holding her bottom and having obvious difficulty walking. She sat down and I noticed her legs...they looked like mine. She was in her eighties, I in my thirties, this didn't seem right.



I came home for the first time and cried about this lovely autoimmune disorder. I didn't feel that I should feel sorry for myself, or that the PA is necessarily "bad" it has just become a new part of my life, something that I have to make accommodations for. This weekend though for the first time I cried because I am in pain, I cried because I am tired, I cried because my body doesn't work like a 33 year old's body is "suppose" to work. Got that out of my system and moved on.



Then today I became angry. The funny thing with my PA is that it isn't something that people can generally see, when it is visible via my limp or the oh so sexy T.E.D. hose I so fashionably donned today, people suddenly feel they have the right to inquire about my medical history. I don't mean people who know me, and are concerned when they see have difficulty getting around, I mean complete strangers! When I limp, strangers think they can say, "hey, did you hurt yourself?" or "ooh, what happened." A short answer like no I didn't injure myself is never satisfactory and they want to know more, and me being me, I politely offer my medical history.



This evening I was waiting for my son while he had an appointment and a complete stranger who saw me sitting and waiting asked "what happened?" I tried to brush it off with a polite answer, but he continued, saying how neat T.E.D hose are. Does he know what he is talking about? Has he ever had to wear these awful, itchy, completely unfashionable things? My anger at the hundreds of rude people who have inquired about my limp or my hose boiled over, and rather rudely I responded by saying "yeah, they're great to need at 33 years old, and they bring such nice attention." Immediately I felt awful as he quickly excused himself, and wished me "luck with that."



So, I feel bad because I was terribly mean to a stranger, I'm angry that people are so darn nosey, and frustrated that my body has changed and I must adjust. I will try not to be so rude again in the future, but honestly, I feel as if I should just put a sign around my neck detailing my medical records! So if you see me, limping around somewhere, compliment me on my clothes, my great fashion sense, or great lipstick, but please don't point and stare at my hose or ask me what happened, results could be hazardous!

Wake up! (world update)

According to Amnesty Internationals 2008 report, which you can access and view for yourself at http://thereport.amnesty.org/eng/report-08-at-a-glance, revealed that people are still not allowed to speak freely in over 77 countries across the globe. Additionally, 54 countries still maintain unfair trials and often abuse within the penal system, while in at least 81 countries people continue to be tortured or ill treated. In Ethiopia alone the army carries out executions, rape and torture, but this is widespread across many nations, particularly those struggling with extreme poverty and oppression.

AI made several recommendations for the coming year which includes a challenge to China to uphold the promise to allow freedom of speech and free press, also urging them to end "re-education through labor" programs. They also challenge Russia to allow for political dissent and allow no "impunity" on the human rights violations occurring in Chechnya. Finally, the U.S. is urged to close Guantanamo Bay and other secret detention facilities and allow for fair trial. Additionally the U.S. is urged to end the torture and ill treatment of prisoners within these systems. Several countries were asked to end the practice of rendition.

People's human rights are violated on a routine basis across the globe, yet few of us pay attention. What's worse is that not all human rights violations are viewed in the same way. While people with disabilities are being neglected, abused, tortured and killed across the globe, Amnesty International barely offers this issue any recognition. With attention these situations can change. Reports from 1994-1997 revealing the severe neglect and abuse of children with disabilities in Russian orphanages, caused a small uproar that led to organizations standing up to promote change. Volunteers began to work to provide daily needs in these facilities and since these children's have have changed! They are no longer malnourished and neglected and treatment continues to improve. Yet, in Ireland patients with mental health disorders and disabilities are forced to stay in long term wards and are neglected and abused, and although attention was brought to the situation in the past few years, the country is still cited for inadequate inspection and care in organizations meant to support people with disabilities. The most horrible pictures and reports I have seen came out of Romania. Young children with disabilities tied to beds, bony from malnutrition and languishing in a state of neglect. These atrocities are not listed high in the priorities of Amnesty International and other organizations. I say this is much a human rights violation as any other and it's time people recognized it as such! All human rights abuses should stop, but we need to include the rights of people with disabilities along with everyone elses!

Stand up, say something, pay attention and GET INVOLVED! Even if it is as small as writing a letter or telling someone else, please send a message that the violation of rights of people with disabilities is just as important to us and as criminal as the violent acts carried out against non-disabled people.
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For more info. on Romania visit these links:


"Disabled Children Confined and Abused in Romania" (ABC News)
http://www.abcnews.go.com/GMA/story?id=1941485&page=1

Video: "Orphans 'Near Death' in Romania" (ABC News)
http://www.abcnews.go.com/Video/playerIndex?id=1944838

Report: "Romania’s Segregation and Abuse of Infants and Children with Disabilities" (Mental Disability Rights International)
http://www.mdri.org/projects/romania/romania-May%209%20final.pdf

"Romania Acknowledges Child Care Problems" (Associated Press via Newsday)
http://www.inclusiondaily.com/news/06/red/0510a.htm

"EP member: international adoptions not a solution for institutionalized children" (Bucharest Daily News)
http://www.daily-news.ro/article_detail.php?idarticle=26037

Penis Envy

I love being a woman, I identify strongly with my femininity and I'm definitely a "girly girl." Yet today, for the first time, for a brief moment in time I wished I had a penis! I was on my way home from work, which as you may know by now is a long way for me, when my lovely car decided she was tired. The car stopped smack dab in the middle of the busiest road during rush hour! I turned and turned the key, but nothing happened! Cars came screeching behind me, whizzing past honking their horns and undoubtedly calling me a litany of names. I called my husband, my darling of a husband, who though he was over an hour away said "I'll be there as soon as I can, be careful."

I sat in the car feeling helpless, I had called my husband, now what? I became aware that it would be safer to get out of the car for although I had my flashers on the cars speeding behind me didn't seem to realize the vehicle was stopped until they were right on top of me. Very carefully I got out and stood in the weeds beside the highway. Car after car drove past containing people inside who apparently thought it was some type of entertainment to stare at the lady on the side of the road in heels. No one stopped to help, but plenty of people honked angrily (because I totally stopped my car in the middle of the road on purpose). I suddenly had a thought, if I were a man I would know what to do, if I were a man I could push the car elsewhere, if I were a man I wouldn't feel so...helpless.

Eventually a cop showed who called a tow truck regardless of the fact that I told her my husband was on his way and had already called a truck. The truck showed up and pulled my car to a place of safety until the next truck and my husband appeared. I took the opportunity to call friends and catch up. At this point I decided that I didn't need to be a man, but I didn't need to be helpless either so I decided that I would take some classes in mechanics (Go ahead, those of you know me can pause to laugh, yes I know what a funny image, Cheryl underneath a car with her high heels hanging out from under!). Eventually the second tow truck came and my husband made his way to me.

Now, we drove almost the whole way home in James' van "Grimace" (the van is named grimace because it is purple). Guess what happened, you'll never believe it, the van got a flat! At this point James began to get flustered, I stayed positive "it's OK, we're close to home, and you have a spare." He got out the spare and began to remove the bolts from the tire when his jack (or whatever tooly thingy that was) snapped. Now he was helpless! He has a penis, but he too was helpless. We ended up having to call my mom to come get the two of us! I love irony, and I love that God has a sense of humor!

I guess today I learned that we all need help, penis or no penis!I'm glad I'm a woman still, but I will learn how to fix a car...or at least get a AAA membership!

List of Little Things

The little things that make me happy:

No matter how many times my son insists I'm I nerd, he still loves to make me laugh,

My youngest daughter's hand in mine,

My oldest daughter's independent, dramatic spirit,

My mom laughing until she cries,

My husband's surprise embrace from behind,

When my boss comes in in the morning,

When D. laughs,

When K. is carefree,

When I connect with an old friend through a silly blog (Michelle), and having an old friend who's known me longer than anyone outside my family,

When someone tells me I've been helpful,

When I know I've been helpful,

When I feel my Nannan and Grandad with me even though they're not here,

When I think of my husband and still get butterflies,

Picking up a book and not being able to put it down,

waking up to a new day...

...Make your own list, I dare you not to smile!

Family

Today is Father's Day, so I'd like to start by wishing a Happy Father's Day to my what a man James. He is a wonderful father and step-father and incredible man. I am so glad he has become my family.

Family...this is something I have thought a lot about lately. Sometimes, the family we are born into isn't so much something lovely as it is something to survive. My own family is great in many ways, my mother has become an inspiration to me and a friend, my sister, a friend and fellow working mother- busy, dedicated, desperate for five minutes alone like so many of us! My father...Well he's my Dad, but I had to reconcile long ago the dad I had with the dad I wanted. When I was younger I cried for hours after watching Father of the Bride (the newer one), yes it's a touching, funny movie, but who would cry for hours? Well...I would! I cried when I realized that Steve Martin's character was very similar to the dad I wanted, but not the one I got. Now this is not a pity party though, I have learned many things because of my father. I have learned that I am strong, I am smart, I am beautiful, I am good, I CAN DO ANYTHING! No matter what I heard from him growing up, no matter how many tongue lashings he handed out, I have found these things despite him. I have forgiven and mourned the dad I wished for, and am grateful for who I am because in large part who I am is a direct result of being raised by him.

Here's the thing with family, we can be born into one that shapes us whether good or bad and we have no control over that. Later, we can stumble upon another family. Not the family we are born with, but the family that adopts us, the people who come into our lives (I believe very purposefully with the help of God), and they support us, celebrate us for exactly who we are and they help shape us into the best versions of ourselves, the people we were always meant to be. I have found that in my James, I have found new family with my children, and I have found family at work.

I ended up at my workplace by some magical force, I know that this is where I am supposed to be at this moment. I am surrounded by people who I am a better person for knowing. Have you ever seen that visa commercial with the schoolboys in backpacks? The line at the end is "Being with people who get you...priceless." I have found people who get me. A wise guardian who gives us wings, a dynamic leader who believes all things are possible, and a group of amazing people who believe we can do something amazing. I have found my best friends here, I have found a new family and I am the best FAB ever because of it.

The world is a sometimes scary but magical place. Open your eyes to the people around you and learn to trust the rhyme of the universe, and you will find the people who get you, it really is priceless!

What a man

Remember that song what a man? I always joke that my husband is a what a man, but truly he is, I am blessed. Well yesterday I met another what a man. As you noted if you read yesterday's blog I was very excited about Dave Hingsburger presenting in Butler. The conference finished today, and today was equally amazing resulting in a standing o. Anyway, when Dave pulled up yesterday he had Joe, his partner with him. The minute Joe got of the car, I found him to be very warm, one of those people others are just drawn to. He was also handsome, full of grace,humor and patience. Unfortunately, he had to be very patient with me both days, because as his warmth made me comfortable, I found it too easy to blather on at him and in my excitement both days I repeatedly made a jackass out of myself. I'm OK with that though, because you can't be jackass if you don't put yourself out there, and the truth is most people won't remember by next week that you embarrassed yourself. Anyway, Joe was patient, kind, warm, funny and so many other things.

I noticed as Dave was presenting that Joe was watching the whole time. He wasn't just watching, but actively participating, laughing and remaining truly engaged. Now of course it's not shocking that someone should be engaged and entertained when Dave speaks, but Joe has heard all these stories many times. Each time though, he responded as if hearing it for the first time and delighted in it. Now, I don't know about the rest of you, but I can only hear my husband's stories so many times before I'm ready for some new ones. But not Joe, he was as passionate about what he heard as those of us experiencing it for the first time! So not only was I struck by Joe as a person, but by the relationship of two people. Joe and Dave work together, live together, drive all over God's creation together, but they are not sick of each other. How many people can say that? I speculate not a lot. They share a respectful, lovely relationship based on care and built on each person's individual skill, talents, likes etc...

We don't always get born into a family that lifts us up and celebrates who we are or who we will become, but when we watch for it, we find other people who get placed in our lives to do just that. They become real family. I am so glad I have my own what a man in James, for these are things we share, and I'm so glad I met another what a man in Joe. I hope that the rest of you can enjoy such beautiful relationships.

p.s. I did ask Joe if it was OK for me to reference him, I apologize that in my sleepy excited state yesterday I spelled Dave's name wrong!

I may pee my pants!

I couldn't sleep last night, I went to bed early then tossed and turned. It was like Christmas Eve, I was a kid again, trying so hard to get to sleep because I knew I needed to or Santa wouldn't come (or in the case, it would be very difficult for me to get up at 4am), but too excited about seeing Santa (or in this case, Dave Hingsburger) to actually fall asleep. So, at 4am too tired to think, but too excited to feel tired I bounced out of bed and prepared for my 80 minute trek to work. My 80 minute trek didn't help any to calm me down, and by the time I arrived in Butler, I was literally bouncing up and down. After set up and preparation and waiting...he arrived, and I went and did it, I told him I was so excited I may pee my pants!

Now, let me take a moment to explain, I know I have said this before, but I really am a nerd, a truly fabulous one but a nerd nonetheless. For myself (and I know several others as well- Curly I'm talking to you now), the people I most admire, who do amazing work, are like rock stars! Put Dave Hingsburger in leather pants and I'd probably throw my bra at him! But this is what excites me, this is what I'm passionate about, this is my meaning in life so please excuse my serious and probably scary enthusiasm!

After all the excitement, and all my hopes about what today would be, I walked away surprised. As much as I built this event up in my head while channeling Freddie in the wee hours of the morning, Dave was even more incredible than I expected! Today I am truly grateful for David Hingsburger (and Joe, for those of you who read Dave's blog, you'll know who Joe is). I walked away today inspired, motivated, excited and also just a wee bit exhausted ( I really need to sleep tonight). I am thankful for Dave and his amazing gift, his gift of story telling, humor and incredible insight. I am also grateful for his gift of humility, he very clearly demonstrated today that he (and we) should never assume we have all the answers, that there is always more to learn. Dave is sharing that lesson with us, and I am grateful.

Today was a GREAT day! I was surrounded by passionate, excited people experiencing greatness and inspiration. I hope that today will set everyone's hearts afire with passion to do something, to make a difference, to follow Dave's example and his experience to create experiences of their own.

I know from having read Dave's blog that he's not always comfortable getting praise, and if he happens to read this I'm sorry, I just really needed to say thank you for sharing your gift! Those of you who are reading this and have never vistited his blog, please go see it now, by comparison anything you see here is not half as inspired! Click the link on this page for Chewing the Fat.