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