It's a Zoo at My House

It's one of those weekends...

We have three dogs, four adults, and six kids in the house and there's a couple more adults and kids joining us for a New Year's Eve party tomorrow. Lauren's friend Sarah, came in from Texas. The hubby made me promise that there would just be "a few people" this year. Thank goodness that he doesn't read this blog.

I'm down to one chair in the dining room. Joe's mom gave us her kitchen set several years ago and one by one, the chairs have been tossed out as they break down. I've finally realized the reason that they're probably breaking down: we have no humidifier in the house and the dry air is probably cracking the rattan. That, and the wild children that live here.

The good news is that we have some lights working in the basement. Our friend Dan came over yesterday and spent the day re-routing wires and adding lights. Here are the guys high-fiving after they turned the lights on:



My mom and my mother-in-law both tell me that the years start becoming a blur as you get older. Time starts spinning faster and faster. They're not kidding! I swear, it was just a few months ago when we had our last New Year's Eve party. We're gonna miss our friends who've moved out of state. Happy New Year to you guys!

Wordless Wednesday--Son Meets Snowman

It's Wordless Wednesday:

"It's not a snowman, it's a SnowWoman, Mom!"

Discovering the Genetic Pattern in my Family

In March of 2006, we had a team of researchers spend the day with us at my house. One of my cousins came up from Missouri and my parents came in from Michigan. All of my siblings and some nieces and nephews were there as well. The researchers spent the day talking with each of us individually and gathering blood samples. Before they left, we sat down to a huge dinner. My mom never lets anyone leave on an empty stomach.

A few months ago, we received a letter identifying the gene with a bunch of numbers and letters. The gene at this point is rare--just two other families have been identified with this gene so far.

I posted more about this gene here: The Genetic Puzzle.

The implications of genetic research are not to be taken lightly. We knew, going into this research project, that we likely would discover information that would impact future generations in our family.

My daughter has the gene and there's nearly a hundred percent guarantee that she will pass this gene on to her children. My sons will not.

My husband and I knew that we would likely have deaf and hard of hearing kids when we got married. That didn't factor into our decision whether or not to have kids simply because there was a deaf gene present. We wanted kids and if they happened to be deaf, hard of hearing or hearing-- it didn't matter. Sure, we talked about how it might be easier to have kids with hearing in the normal range. And we grieved a bit when each of our kids lost their hearing, mostly because we knew that society was going to give them a rough time here and there.

In the end, it comes down to attitude. I happen to think that this world is much more interesting because my deaf and hard of hearing kids are in it. I like hanging around people who feel the same way. I avoid toxic people who think that my family, my kids are less human because our genes are a little skewed.

And I look forward to embracing my deaf, hard of hearing and hearing grandchildren someday.

BookHands--What Happy Women Know

On Saturday night, it was my turn to host BookHands, a deaf women's book club, at my place. I'm notorious for picking books by deaf authors or with deaf themes, but this time, I went with a self-help book, What Happy Women Know.

We were missing two of our members, Karen and Kathy, who moved out of state (and how we do miss them!) and another member had a company party to go to. We had quite a lively discussion about happiness and the role of money in happiness. We took some trips back in time where we shared some happy memories. We talked about "Jobs, Careers and Callings" and how each of us approached our work in life. Some shared how the hard times in life brought happiness through a better sense of self and changed circumstances.

A great book, great discussion and a lot of food left us discovering that we are indeed a happy bunch:

Dorothy Meets Alice--And My Son

Two weeks ago, my oldest son was asked to take over a role in the Hinsdale South Deaf Drama, "Dorothy Meets Alice." So for two weeks, he stayed after school until six p.m. and practiced learning 35 lines in American Sign Language. We went to see the play last night and I was so, so proud of my guy! The entire cast did a good job, although there were times when the ASL went over our heads. He's in the red shirt below:

Mom's Night Inn--A January Retreat

Are you a mom or caregiver of a deaf or hard of hearing child? Then you'll want to join the Illinois Hands & Voices Mom's Night Inn on January 12, 2008.

This overnight retreat begins at 2 p.m. at the Holiday Inn in Naperville, Illinois. Leeanne Seaver, the Executive Director of Hands & Voices, will be presenting her own journey, "Beginning with the End in Mind: What I Know Now, I Wish I Knew Then." There will be pizza, crafts, a couple of heart to heart discussions and some pampering. Sunday includes a full breakfast and a parent/child panel where the audience can ask questions from both perspectives. This is for Moms and Caregivers of deaf and hard of hearing children of all ages. This is an event where we connect and learn from each other.

For more information and to join the fun:

Mom's Night Inn Flyer

Mom's Night Inn Registration

Wordless Wednesday-- PMS!

At my Women's Club this Sunday, my friend Jean gave me this dish towel. Need I say more?

Happy Wordless Wednesday!

Leonard Hall, Attorney for the City of Olathe

My friend Tony, has just completed the LSAT and is planning to go to law school when he finishes his undergraduate degree. Tony is hard of hearing and I've been connecting him with deaf and hard of hearing lawyers when I find them.

Here's one for you, Tony:

Leonard Hall, Kansas Attorney.

One Proud Mama

I'm one proud Mama this morning:

Deaf Students Prepare for "Dorothy Meets Alice."

I Wish You Enough

You know those email tidbits that get sent over and over around the internet? Well, I don't usually read through many of them, but my cousin Chris sent me this one below and I thought it was beautiful. I don't know who the original author is so I can't give any credit. Here it is:

Recently I overheard a mother and daughter in their last moments together at the airport. They had announced the departure.

Standing near the security gate, they hugged and the mother said, "I love you and I wish you enough".


The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom".

They kissed and the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted and needed to cry. I tried not to intrude on her privacy but she welcomed me in by asking,"Did you ever say good-bye to someone knowing it would be forever?".

Yes, I have," I replied. "Forgive me for asking,but why is this a forever good-bye?".

"I am old and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral," she said.

"When you were saying good-bye, I heard you say, 'I wish you enough'. May I ask what that means?".

She began to smile.

"That's a wish that has been handed down from other generations. My parents used to say it to everyone". She paused a moment and looked up as if trying to remember it in detail and she smiled even more. "When we said, 'I wish you enough', we were wanting the other person to have a life filled with just enough good things to sustain them". Then turning toward me, she shared the following as if she were reciting it from memory:

I wish you enough sun to keep your attitude
bright no matter how gray the day may appear.

I wish you enough rain to appreciate the sun even more.

I wish you enough happiness to keep your spirit alive and everlasting.

I wish you enough pain so that even the smallest of joys in life may appear bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

She then began to cry and walked away.

They say it takes a minute to find a special person, an hour to appreciate them, a day to love them but then an entire life to forget them.

Chris lost her mom not too long ago so I know this is special to her.

Wishing you "enough" right back at you.

A Blast from the Past--Visiting Northern Illinois University

Yesterday, I headed west to Northern Illinois University for my annual visit with Dr. Ouellette. Dr. Ouellette is the Department Chair for the School of Allied Health. Each year, I speak to her graduate class about Hands & Voices and raising deaf and hard of hearing children. Every year, we grab lunch together before class and catch up on life.

After the class was over, I headed over to the Health building and visited some old friends and staff. It has been 23 years since I first set foot on campus, but many of the same staff are still there. And each year that I come back to NIU, I'm more and more aware of how quickly time is passing by. I used to babysit for many of the staff at NIU and now their kids are in college and in some cases, starting families.

Ah, but what really broke my heart was seeing a popular bar shuttered and up for lease:


There were some good memories at that bar!

Disaboom.com--A Community for People with Disabilities

A few months ago, I was asked by Disaboom.com to join their group of bloggers writing about life. My blog posts can be found here: Deaf Mom's Disaboom.

Disaboom is a brand new website that focuses on disability topics and people with disabilities. The website launched in October of this year, and will re-launch with some improved changes in January of next year. The Vancouver Sun recently did an article on Disaboom: Disaboom Gathers Disabled. One of my blog posts has a brief mention in there.

Here are some of the popular blog posts I've done at Disaboom:

Carmel Flores

Disability Blogs on the Web

Meet Stephen Hopson

Henry Kisor Releases New Mystery Novel

The Deaf Freedom Cruise

Deaf People Have Signaoke!

Barbe Gurga--Ride like the Wind, Girl!

It was a cold, blustery day for a funeral today. St. Alphonsus Church, located in the heart of Lincoln Park, was filled with friends and family who came to remember Barbe Gurga, a deaf Rehabilitation Counselor. For 21 years, Barbe worked with countless deaf and hard of hearing clients to develop their careers and assist in finding jobs. In April, 2004, Barbe was diagnosed with uterine cancer. Even after getting round after round of chemotherapy, Barbe headed off to work as long as she could.

My first encounter with Barbe was back in 1989. I headed to her office from graduate school to shadow her on the job for several days. Each day, we went out to lunch and chatted up storm. I remember asking her, "Do you like what you do?" Barbe smiled and said, "Yes, I love my job and the people I help, I just don't like the paperwork."

I continued to see Barbe at meetings and advocacy events throughout the years. Then I had my kids and focused on being a mom and I saw her less and less. But each time I ran into Barbe, she always had a smile on her face and a positive outlook on life.

The Eulogy was given by Jay Blumenfeld and signed by Howard Rosenblum. Jay recalled some of Barbe's last days:

"She told me she wanted to get better so she could go back to Switzerland and ride her moped through the mountains and feel the wind blowing on her face with birds soaring high in the sky. I looked at her with a smile while she was telling me her dream, thinking that she would not be able to go back. But now I do realize her dream did come true--it's called Heaven. Barbe is now free and she can ride her moped anywhere and anytime her wonderful, beautiful spirit takes her!"

So Barbe, girl-- ride like the wind!

The Kindle--My Neighbor Had This Idea!

My neighbor, Rick, took a business class two years ago where the students had to come up with an idea and write a persuasive paper on that idea. Rick watched his son come home with heavy textbooks each day and thought, why not develop an electronic book for all of the textbooks?

Ah, but someone beat him to the idea. It probably won't be long until schools switch over to the newest product at Amazon: Kindle

At $399, the Kindle is flying off the shelves and currently out of stock. Amazon is stocking up and filling orders as fast as they can. There are 90,000 titles that can be downloaded wirelessly from anywhere--no need for a PC or wireless hotspot. Each book or bestselling title can be loaded for $9.99 and read over and over.

As much as I love the feel and look of books, I have to admit that it would be nice to have this nifty device for traveling. I like to bring four or more books sometimes in case I don't like one of them and having a Kindle would mean having to pack one simple thing.

So if you're looking for some ideas for that special someone, this would make a nice holiday gift for those who spend a few hundred on a loved one.

Rick--head over to the educational companies and go make a deal with the Kindle.

Adopted from Russia, Deaf Student Enjoys Life in America

A couple of weeks ago, my son David asked if he could have a new friend over. "Sure," I said. After all, the reason we fought to have him attend a different high school was to end the social isolation he was experiencing in middle school.

David's friend Aleksey came over with another friend and the guys played video games. Aleksey and his friend came over another weekend, playing video games and hanging out. It was clear that David enjoyed being with his new friends.

Aleksey's story is an interesting one. Born with Treacher Collins Syndrome, he grew up in an orphanage in Russia and came to America just before he turned twelve. His parents found him through the Children's Hope International. You can read more about Aleksey here: The Ultimate Survivor.

Aleksey will be featured on the ABC News this morning at 11 a.m CST through an interview with Karen Meyer. The transcript is up and the captioned video will be available later today. Deaf Gymnast Excels.

Wordless Wednesday--Waiting For the Kids

It's Wordless Wednesday! Here's Kaycie waiting for the kids to come home from school.

Emma Agnew, A Life Ended Too Soon

It was the news that I was hoping not to hear. For the past few days, I have been reading about Emma Agnew, a deaf woman from New Zealand. She went off to meet someone about selling her car and was missing for nearly two weeks. Christy Smith, a deaf participant on the Survivor show, posted information about Emma on her blog: The Search for Emma. Jamie Berke from About.com also urged readers to help find Emma.

This has a terrible, sad ending: Emma was found murdered. A 35-year-old man has been arrested, his identity has not been released. More can be found here: Deaf Community in Mourning.

My heart goes out to the family and the Deaf Community of New Zealand.

An interview with the family can be found here: Emma Agnew: Living Life to the Full.

Illinois School for the Deaf Sees Enrollment Increase

When my friend's son Matthew attended sports camp this summer at the Illinois School for the Deaf, he told his Mom, "I want to go to school here."

Sue never thought that she would consider a residential school as an option for her kids. Sue is deaf and she grew up attending schools that had several deaf students within a regular school. She always had one or two deaf friends to hang around with when she was growing up. She attended Hinsdale South, which had several hundred deaf students back in the 80's.

So when Sue saw the isolation that Matthew's brother, Alex, was experiencing during his freshman year at their local high school, she decided it was time to take some action. Hinsdale South wasn't an option for them unless they moved to a district that would accept placement there. Sue sat down with Alex and together, they made the decision to enroll at the Illinois School for the Deaf.

Sue called an IEP meeting with the district team and explained the reasons for her decision. "I was tired of seeing my kids socially isolated," Sue shared. "And when I explained this to the team, one of them simply said, 'they're all isolated.'"

For the same reason, Illinois School for the Deaf is now experiencing growth at a time when other schools for the deaf are struggling to keep their students. A recent newspaper article explains more: ISD Sees Enrollment Boom.

Social isolation for deaf and hard of hearing kids is a subject that is difficult to talk about and difficult to remedy when schools have rigid boundaries and limited regional programs.

To me, the solution seems simple: break down the boundaries and allow parents to choose school programs with a critical mass of deaf and hard of hearing students without having to fight for them.

For Sue, it will be hard to send her two sons off to Illinois School for the Deaf in January, but she knows that it is the right decision for her family.

"It's time to end the social isolation," she says.

Chicago Tribune Story--A Daughter's Journey with Hearing Aids

The hubby tossed me the "Perspective" section of the Chicago Tribune this morning. I almost never read this section of the newspaper but today, there was a side shot of a cute four-year-old girl sporting a hearing aid with a swirly pink and blue earmold.

Hear and Now? is written by Julie Vassilatos, a mom in Hyde Park, Illinois. She recounts the family's journey of getting a diagnosis and finally fitting her daughter, Angeliki, with hearing aids. Or "hearing maids," as her daughter describes them. Or perhaps it is "hearing mades," her mom shares.

"Strangely, Angeliki doesn't always want to hear as much as I want her to," Julie writes. "Who wouldn't love to hear everything better all the time?"

But I have say this-- Julie is quick to understand. She goes on to explain how hearing aids amplify everything, and that hearing is exhausting work. "And it makes a little child sleepy and cranky," she says.

As I'm typing this, my son is at the computer next to me with his rap music cranked up loudly. "Hey Mom," he says, "Go put your hearing aids on. I want to share this new song that I downloaded."

No thanks, honey. The silence is bliss this morning.

Potbelly Cooks up Some Access

Potbelly Sandwich Works was handed a lawsuit when a customer using a wheelchair couldn't access the restaurant:

Potbelly Adds Accessibility to the Menu

Kudos to Potbelly for committing to an accessible design for all their restaurants-- even if it took a lawsuit to make it happen.

Now let's see them hire people with disabilities as well!

John Maucere, Deaf Cruise Director

John consults with cruise staff about upcoming entertainment on the ship.


John and Mac perform a belly flop at the end of the Belly Flop Contest.
****************************************************************

John Maucere was the perfect cruise director for the Deaf Freedom Cruise. Filled with boundless energy and sporting a Hollywood smile, John entertained the guests each day through various activities. With his background in stand-up comedy, John kept the passengers laughing each day.

"My experience as the Cruise Director was awesome!" said John. "It was almost 24/7 on the job for me, having to host games and perform evening shows. I had a fabulous time seeing thousands of smiling faces."

John was chosen as the Cruise Director after Mac and Tab Partlow, owners of Passages Deaf Travel saw him perform as a stand-up comedian at the DeafNation Expo in North Carolina. "I was honored to be part of history in the making," John continued. "The Deaf Freedom Cruise will be an unforgettable time in my life. I had a wonderful experience and I was blessed to be a part of that special week."

John grew up in Hollywood, California and attended the California School for the Deaf in Riverside at the age of four. John is part of a third generation deaf family. "My family was heavily involved in Deaf community events, which exposed me to the deaf way of life, its culture, history and language," explained John. He grew up watching his mother perform at deaf clubs and while at Gallaudet University, John was bitten by the acting bug. He performed in the National Theatre of the Deaf and later formed his own company, Deafywood, which specializes in stand-up comedy and shows about deaf life. John is known as the "Deaf Jay Leno" and does impromptu interviews with deaf and hard of hearing individuals at events, just as Leno does on the street in his show.

John and his wife Lauren are the parents of two children. When he isn't off performing, John works as a Deaf Interpreter in the Los Angeles court system.

Books on my Shelves and in My Hands

Terry Starbucker over at A Glass Half Full tagged me for a book meme. This meme is right up my alley, as my mother used to beg and plead for me not to bring a book to the dinner table each night. My own daughter always has her nose in a book, but I have to beg and plead with my sons to crack open the printed page.

So here goes:

Total Number of Books on my Bookshelves: I would guess that I have around 200 books. I've been selling them off one by one in the effort to downsize my life and only keep the ones that I treasure.

The Last Book I Read: I'm currently reading Talking Hands, a fascinating, well-written book about a community, Al-Sayid, that has a large population of deaf and hard of hearing members due to genetics and inter-family marriage. It is a modern day version of the community that existed in Martha's Vineyard many years ago.

Last Book Bought: I just bought one yesterday despite a promise to myself that I would not add to my book collection. I had a gift certificate that I won a year ago on Epinions and I finally got around to using it. So I bought The Unheard, by Josh Swiller.

Five Meaningful Books:

What Happy Women Know by Dan Baker and Cathy Greenwood. I selected this book for next month's BookHands meeting in my home. We're going to explore the secret to happiness.

On the Fence by Mark Drolsbaugh. This book is special because I was able to contribute a chapter about growing up hard of hearing.

Please Don't Cut Me! by Angela Hoy. Another special book for the same reason--I contributed a chapter about my son's homebirth.

If You Could Hear What I See by Kathy Buckley. A humorous look at life without normal hearing.

Don't Sweat the Small Stuff by Richard Carlson. This is a great book about letting the little stuff slide.

I'm tagging the following to play along:


Adversity University

Groovy's Ruminations

Enter the Laughter


A Writer's Words, An Editor's Eye

Beth and Cory's Mom

Communication Access on the Deaf Freedom Cruise

When the hubby and I got married on November 4, 1989, we shared our honeymoon with another deaf couple, Kay and Paul Folster, who were married on the same day. By the seventh day on our honeymoon cruise, we were ready to go home. We sat through a movie that wasn't captioned and couldn't enjoy any of the comedy or entertainment as no interpreter was provided. Because of that experience, the hubby was very relunctant to attempt another cruise.

Royal Caribbean is to be applauded for the communication access they provided on the Deaf Freedom Cruise. As soon as we arrived at the Port of Miami, there was an interpreter in every corner. Royal Caribbean hired 124 interpreters, including interpreters from other countries and deaf blind interpreters. On that first day, the interpreters worked the entire day with nary a break.

Mac and Tab Partlow,(seen with me in the photo above) the owners of Passages Deaf Travel, arranged for staff training. Royal Caribbean moved one of their staff, Bobby Brown, the Training and Development Manager with a background in Deaf Ministry, from the Navigator of the Seas to the Freedom of the Seas. Bobby arrived seven weeks before the cruise and provided classes to the entire staff. Keith Wann and a deaf staff member from Passages Deaf Travel teamed up with Bobby and together they provided numerous classes and a DVD for the staff. Some of the classes were provided late at night, which was the only time some of the staff were available.

We especially enjoyed our wait staff at dinner time. Ronnie, our head waiter from India (the tall guy in the photo below), stayed by our table one night and chatted with us. He used gestures and the signs he could remember and told us about his family back in India. His brother is a staff person on another ship. Each of them keep long hours. Some nights, they don't get to bed until four a.m. and they get up a few hours later. Ronnie was quick to whip out a notebook and pen whenever we had difficulty with communication. We always encountered smiles and friendly faces among the staff, which is even more remarkable considering the long hours that they work.



You can read more about the communication access here: Disaboom.com.

As for the hubby, the one who initially didn't want to go on another cruise after our honeymoon, is now saying he wouldn't mind another all deaf cruise!

The Wonder Woman Award Goes To...

Anna, from Beth and Cory's Mom surprised me with a Wonder Woman award. Thank you, Anna! I sure wish it came with Wonder Woman's body, too!

I could have used Wonder Woman at my house last night. I was in bed watching HGTV when my youngest son came in the room and said, "Mom, I hear something like water splashing."

Uh oh.

I got out of bed and turned on the light in my bathroom. Water was on the floor everywhere and it was spilling over the counter of the double sink. I frantically grabbed towels that were hanging up and the youngest ran downstairs to get the hubby. I opened the vanity doors and there was an inch of water inside.

Uh oh.

It took a while to sop up the water. We used just about every towel in the house. There was a lot of it on the floor. Unfortunately, it dripped into the ceiling over the kitchen as well. It will take a few days to see if we will be able to salvage the drywall.

Apparently the hubby was washing his hands and noticed that I left a shirt in the sink so he went over to the other sink but forgot that he left the water running.

Uh oh.

But back to the Wonder Woman award. The very first blogger that came to my mind was Liz Strauss from Successful and Outstanding Bloggers. Liz has an incredible amount of energy and often posts thought provoking questions on her blogs. On Tuesday evenings, she hosts "Open Mic" night, an event where bloggers leave hundreds of comments on a themed post and the comments actually become an open conversation for several hours. Liz created the SOB Award for Successful and Outstanding Bloggers. If you have a few hours between meetings, you'll find some incredible blogs on this list to read.

So Liz, the Wonder Woman award goes to you!

Deaf Freedom Cruise--Jamaica's Deaf Folks

The ship pulled into Ocho Rio, Jamaica on Thursday, November 1st. It was a cloudy day with periods of rain throughout the day. One of the first things we did was to sign up for parasailing through a local company. My two oldest kids were game, but my youngest one decided to watch instead.

The kids took off right from the boat:


Just as my daughter touched down back into the boat, it started to pour. We took shelter near the shore and ran into a group of deaf Jamaicans. They were very friendly and welcoming. Many of them left their place of work to see the "big ship with deaf people." Gloria, the woman in yellow in the photo below, is the president of the Jamaica Deaf Club. She lives in Kingston, over three hours from the port. Kingston is the largest city and the capital of Jamaica.


On the way to the shopping center, we were stopped by a local woman offering to braid hair. As she braided my daughter's hair, she explained that jobs were very hard to find on the island. Many of the locals had never been off of the island. "It is too hard to obtain a visa to leave," she explained.

I was amazed at her beautiful command of English. "What is the official language of Jamaica?" I asked her. She explained that there were three languages spoken there: English, Broken English (which is known as Jamaican Patois and is a creole of English and African language)and another language that I could not understand but that started with a "B". From searching the internet, I think she meant Bongo Talk.

Just listening to her describe her life on the island made me appreciate the freedom that we have to come and go in America.

Deaf Freedom Cruise--Grand Cayman

On Wednesday, October 31, we pulled into Grand Cayman on the other side of the island. Our original stop was supposed to be near the shopping center, but due to high winds and rough seas, we embarked on the other side.

The line to get off the ship went all the way up to the fifth floor of the ship. Rather than waiting in line, we jumped into the pool and did some more boogie boarding. I discovered a hammock in the solarium and took a much needed nap. In the afternoon, we decided to grab a boat ride to the island and do some swimming at the beach. The line going back to the boat was much quicker:


One of the fun games in the evening was the show "Accept or Accept Not" based on "Deal or No Deal." Each contestant competed for an upgrade to the owner's suite on the boat and various other prizes. In the photo below, Peter Artinian from Sound and Fury is shown trying to decide which case to open:


Every evening, the fifth (not fourth, as Fookem noted) floor of the Promanade deck was filled with people:



The two most popular spots on that floor were the coffee shop and the pizza restaurant. Both places offered sandwiches, coffee, cookies and pizzas at no cost. A few of my friends were able to stay up until four in the morning. I couldn't keep my eyes open past two a.m. on my best night!