He Calls Me MeeMa!

This week I heard the best new word coming from the sweetest little voice!  This year was Destination Christmas for our whole family and we spent it on the beach in Florida.  A week with our whole family is a rare occasion but spending it with our grandson is DOUBLE the joy and fun. The day after Christmas we were all together when I heard him call me "MeeMa!" for the first time. My heart just melted and jumped for joy and it really made my day! Actually, it has made my whole week, Christmas, and all!

I have had many names in my lifetime.  I am a daughter, sister, friend, wife, mommy, Mom, mother, mother-in-heart, granddaughter, cousin, niece, etc. just to name a few.  I've wondered for years what our grandchild would call me (he calls Steve, "Papaw").  Just to hear his sweet little boy voice call me "Meema! Meema! - over and over again is music to my ears and totally priceless!  I just wanted that moment to stop in time for just a little longer....it was the best Christmas present ever!

As I wrote in my journal this week, I reflected on Psalm 139 where God knew our names long before we were conceived or born.  He knew a long time ago what Jackson would call me.....

"You know exactly how I was made, bit by bit.

How I was sculpted from nothing into something.

Like an open book, you watched me grow from conception to birth;

all the stages of my life were spread out before you,

The days of my life all prepared before I'd even lived one day..."

(from The Message)

I really didn't want to be called a traditional name like "Grandma" or anything like that but I love "Meema!"  It would probably change over time to something like "MeeMaw" as he gets older but this is perfect!  We've enjoyed our time together playing with his new toys, going for walks, eating together, shopping, etc.  He doesn't sit still for long!

Soon it will be a brand new year with new sounds, opportunities, and changes....

Happy New Year to you.  And may 2010 be the best yet!

What Will You Give Him?

This is one of my favorite Christmas items that I get out every year when we start decorating our home for the holidays.  It was given to me by my very good friend, Claire, who passed away several years ago to ovarian cancer.  She knew how much I loved the Little Drummer Boy at Christmas time and found this for me.  I haven't seen anything like it since.

I know I have not been actively writing in this blog for the past year and hope to resume some regular posting after the first of the year.  This year has been an extremely busy one and has gone by so fast. But, I'm still hearing beautifully with my cochlear implants and am so grateful that I can hear, especially at this time of the year with Christmas music, messages, and the love, laughter, & joy of friends and family.  I just talked to my Dad on the phone just before writing this!

~~~~~~~~~~

My favorite theme and song surrounding Christmas is "The Little Drummer Boy." This song takes me to the manger where Jesus laid and I am at a loss to explain why, exactly, this song stirs my feelings so much. The fact is, this song, like no other of the season, fills me with quiet hope and joy. Maybe it’s because it lets me view God and Jesus with the same sense of wonderment as the little drummer boy, himself. He didn’t have anything to give but his music, and he gave that willingly and without hesitation.

Those who know me know that I collect ANYTHING that has to do with a little boy who plays his drum. Our Christmas tree is decorated with drums and drummer boy ornaments. I have various displays such as music boxes, plates, knick knacks, pillow, and even a flag with the little drummer boy. Why do I treasure this symbol? I have pondered and asked myself that question many times. Even though the Bible doesn’t say anything about a drummer boy playing for Jesus, the song has been special to me because of the beautiful message that in it. . .

Come, they told me, pa rum pa pum pum. . .
Our newborn king to see, pa rum pa pum pum. . .
Our finest gifts we’ll bring, pa rum pa pum pum. . .
To lay before the king, pa rum pa pum pum. . .and so the tune goes. . .

Do you know the song? Do you know the story? Do you know the message?

The message is about a little boy who thinks he has nothing to give to the Savior. He apologizes in the song by saying, “I am a poor boy, too, pa rum pa pum pum. . .I have no gift to bring, pa rum pa pum pum. . .that’s fit to give a King, pa rum pa pum pum. . .

I read an American Indian quote the other day that touched my heart and it goes like this: “The drum must be the Great One’s favorite instrument because He gave all of us a heartbeat.” Isn’t that beautiful? You know what? It wouldn’t surprise me if the drum was Jesus’ favorite instrument because the little drummer boy gave his heart and soul when he played his drum. When he played the drum, the music that beat inside him brought a smile to the face of the baby in the manger. The little drummer boy in his own way was showing us what we should all do ourselves. We should share the beat and rhythm of what is inside of us. For God wants our hearts and the things that make our hearts beat. I truly believe that what is inside of us is the most sacred and holy gift of all.

So, my question to you is, what will you give when you come to Jesus at the manger? What will you bring when the time comes? Will it be the things you have? Your money? Stuff you have accumulated over the years? I have said this before and will say it again . . . the best gift you can give to anyone is yourself. Don’t wait. Because if you do, you will deny yourself and others the blessings the God has for us. Whatever is in your heart should be shared with those you love. We all have a heartbeat and a rhythm. When we share what is deep within our hearts, then our light will shine before others. Our “drumming” will be spread throughout the world, just like it did when the Little Drummer boy played for his Savior.

So, as you treasure and ponder at Christmas time, think about what you will bring to Jesus? It is time for you to give your heart and play your best for Him. Then, he will smile at you, too!
 ~~~~~~~~~~
The above post was originally written December 27, 2006 but I wanted to share it with you again.  I love the Little Drummer Boy, his trusting faith, and his willingness to give what he had....his love.  These last few weeks I've heard several different variations on the song "The Little Drummer Boy" and am reminded over and over of His gift to Jesus.  What will you give Him this Christmas?

Merry Christmas to you, my faithful readers!  See you next year!

A Spooky CI Moment...

Here is a question for you:

If a car alarm goes off in the garage and no one is around, does it make a sound?

The other day I was working in my office upstairs (I work at home for our consulting business) and heard a car alarm go off. I had my window cracked a little bit so I could hear the birds and thought that maybe it was my neighbor's car going off but didn't see anything or anyone. Then it stopped a few seconds later.

I continued working for a few more minutes.....then I heard it AGAIN. Before I could get up from my chair to investigate, it stopped. Now, whenever I hear an unusual sound or one that confuses me, I find someone to tell me what it is. But this time I was alone in the house and had to figure out for myself this time. I thought that maybe Chris had come home for something and was in the driveway messing around, teasing me. (As a mother of boys I've had my share of "pranks" and "jokes" played on me before!)

Then, I heard the car alarm go off AGAIN! And this time it stayed on (and Riga was going crazy barking and pacing in the kitchen). So, I got up and went downstairs because it sounded like it was coming from the garage. Sure enough, it was coming from MY CAR and the lights were flashing on and off, all by itself. No one was around, nothing was touching the car or had bumped it, and I was pretty sure the keys were in the house. I just stared at it for a few minutes with my jaw open trying to figure out what to do. As I started to turn around to go back inside to locate my keys, the darn thing shut off by itself.....RIGHT IN FRONT OF ME!

By now I was really starting to get confused (and a little spooked) because this had never happened to me before and I was alone in the house. I sent Chris a text message to his phone and told him what was going on. He said that maybe my door alarm system was going bad and that maybe I should call the dealership to get it fixed. I found my keys on the hook in the kitchen where I usually hang them and I heard the car alarm go off AGAIN! And it shut itself off about 30 seconds later. I took my keys out to the garage, pointed my keys at the car, and pressed the buttons a few times to see if I could deactivate the alarm. The car stayed quiet after that so I went back upstairs to continue working.

But, later, I transferred Steve's laundry from the washer to the dryer and found my EXTRA car key in the bottom of the washer! He must have left it in one of his pockets! He is usually good about emptying his pockets and almost always puts the car keys in the same place in his office. So, while the key was being "washed" it must have set off the sensors to activate my car alarm! I just had to laugh and realized that was why the car alarm was being set off. I immediately took the key and put it in my cochlear implant dryer to dry it out and keep it from being damaged any further. We had just gotten new keys for my car and they were not cheap. I've used my Dry-N-Store for my CI to dry cell phones before. If it can "dry" a $7,000 cochlear implant processor, it can certainly dry an electronic key or cell phone which costs a lot less!

I was relieved that I was able to figure out why my car alarm was going off. I was afraid it had gone off in the middle of the night, waking my neighbors, when I wouldn't be able to hear it at all. And no one would have been able to get a hold of me to tell me to shut it off. There are times when I don't have my processors on and do not hear a thing, like when I'm alone, in hotel rooms, fixing my hair, etc. Which brings me to another post later regarding my thoughts about considering a hearing service dog in the next few years for my next dog....

Four Years Ago Today...

Four years ago today my first cochlear implant was activated...

Four years ago I heard the sound of a little boy's voice as he talked to his mom....sounds I had missed when our children were little...

Four years ago my four children surprised me with my very first iPod.... (I'm on my second one now!)

Four years ago I heard the beautiful sound of 19,000 women singing in acapella, the faint sounds of 19,000 Bible pages turning in complete silence, and 19,000 women worshipping together at a Beth Moore Conference in Knoxville...

It is hard to believe that I've been on this wonderful "Dance with Sound" for the last four years. I never dreamed it would be possible to hear this well in my lifetime, going from a severe/profound hearing loss to normal hearing in both ears. (I went bilateral with my second ear in January of 2007.) I still continue to discover "new" sounds in different environments but not as frequently as I did in the beginning. Getting a cochlear implant (or two) is not a "quick fix" to a hearing loss and it took much hard work and perseverance on my part to get to where I am today. I spent over a year in therapy just learning to hear all over again because I never heard those high pitched sounds that are such an important parts of speech. I had family members read to me and practiced listening to books on tape. I practiced on the phone even though I dreaded it. But it has all been worth it worth it and I'm still "practicing" today.

My cochlear implants have given me a new lease on life and connected me to another world of deaf and hard of hearing friends from all over the U.S. and the world, through the Hearing Loss Association of America (HLAA) and through this blog.

One of the best parts of this journey is being able to hear the precious & sweet "little voice" of our grandson! And it has increased my faith....for NOTHING is impossible with God! He always has a plan...in His timing...if we only ask...

And I couldn't help but smile and say "Thank you, Lord" as I listened to the sound of the rain above me in church this morning as we sang "Grace Like Rain...falls down on me.....Alleluia!"

A Cochlear Implant Journey Video

This is a must see video! It describes the hearing loss journey of Josh and Sam Swiller, their cochlear implant surgery, activation, therapy, and life afterwards perfectly....and is almost identical to my hearing loss experience and results. It is captioned, too!

What a gift technology has given to the deaf and hard of hearing....Enjoy!



Soundproof Trailer created by filmmaker Rebecca Haimowitz.

A Lotte Update

After I sent a response to Lotte's father about "the experiment," I received the following response. Lotte's father has given me permission to share it:

"Hi Laurie,

Thanks for that experiment. And a thorough job you did...Was great to hear how you perceived the sound. "Distant and nasal" is a description we can use. With this we will try to have Lotte to wear it on the ear. With the battery still on the shoulder perhaps. We'll do some experimenting ourself. Thinking of it, the fact that the BTE is not just hanging on the ear, but also hugging the bone of the head, might be a reason for a different sound. Like we, and you said, Lotte will decide for herself. And with her being used to the current sound, changing might not be the most popular thing to do. But we'll try in the weekend. I don't think the distance between face and microphone makes the difference, but who knows. Lately Lotte has been talking louder. We feel that it has to do with the vacation. Being outside for so much (weather in Holland and Italy was great) might require more sound in order for her to hear her voice in the same way. Another factor might be the fact she has been excited 24/7 during the holiday... Happy bunny...

By the way... Have you found ways that you benefited from it? Again, thanks for your help. It has been very informative."

Lots of love, Onno & Marieke B----, on behalf of Lotte

I wrote back and said this:

As far as benefitting from having the processors on my shoulders, I can see where it might help in certain situations, like if I was in surgery or in bed for an extended period of time, doing an outdoor activity like boating, skiing, or something active where I would not want to lose my processors if they fell off....

And later, another response:

"This weekend we tried it on the ears. With the batteries on the back, and with the complete BTE on the ear. Lotte doesn't mind, but still prefers them on the shoulder. So do we.... after she came back with a broken BTE. It had fallen off, and 2 of the 3 little pins of the bayonet-closing thingy (how on earth do you call that) broke, making it impossible to close it. Well, it's on tape now. Duct tape will be the next move..Anyway, we put it higher on the shoulder than before... not much change though..."

Poor Lotte, she now has a broken processor after trying it on her ear...I feel bad for her. Hopefully she will get a replacement processor soon!

A Very Special Request

Last month I received a very special request from another blogger who lives halfway around the world in Norway. His daugher, Lotte, wears the BTE (Behind The Ear) Cochlear Freedom Processors and is also bilateral like me. Her father asked me to be a guinea pig for an unusual experiment....

You see, Lotte does not wear her processors behind her ears but on her shoulders in little handmade pouches. Several medical specialists do not like the way she wears them but really cannot provide an answer why her cochlear implant processors should be worn on her ears. Lotte was implanted at a young age and has always worn her "ears" on her shoulders. And does not want them any other way. I know of other bilateral children whose parents put the processor(s) on their child's shoulders because it keeps them from falling off their small ears or manipulating the controls or losing them. Lotte's parents want to have some ammunition the next time the doctors and audiologists started complaining.

So, Lotte's dad reached out to me via Facebook and asked me to try wearing my processors on my shoulders for a few days so that they could have an adult opinion when this issue came up. Lotte is still too young to give them feedback on what or how she hears because she does not know anything different. Her parents are curious to know if sounds are softer on the shoulder or more difficult on the shoulders as opposed to being on the ears. They also wanted to know if there was a difference if the processors were covered with a coat or jacket, whether sounds were easier to hear without the wind blowing across the microphones or they were more muffled. I tried hanging my processors off my ears but my coils were too short to notice any changes in sound perception. After we traded several messages, here is what I got in the mail....this...

... and this! They sent me some "pouches" for my processors to clip on to my clothing, a pair of long coils, and the sweetest note! I have a feeling that Lotte put those stickers on! I love the beautiful handwriting, too.When I was Lotte's age until the age of 20, I had the most powerful body hearing aid available on the market and wore it tucked in my bra. I was very creative hiding my cords using my bra straps and rubber bands because I did not want anything to show. My microphones were in front of me on my chest. In fact, when I talked on the phone, I looked like this:I never really knew a difference having my "ears"on my chest because I did not have anything else to compare with and it was all I knew. And heard enough to get by with what little hearing I had.

Later, as an adult, I was tired of the "box" on my chest and got BTE hearing aids, mainly for cosmetic reasons. Even though the BTE's were not as strong as the body aid, I did not care because I wanted to "look good" and not have to bother with the cords, etc. My hearing was so poor that I really couldn't tell the difference between the body aid and the BTE's on my ears, except the BTE's were softer and not as strong.

I was honored and happy to do this "experiment" for Lotte and her parents. Not everyone can move their "ears" to their shoulders! The first thing I noticed was that my voice and sounds were very "nasal" or muffled, as if I had water in my ears or was in a swimming pool area. That did not change after a few days. But, the brain is an amazing organ and probably would have adjusted if I had kept them that way for a longer period of time. It was also very inconvenient having my processors on my shoulders because I could not change my batteries or change my programs or settings quickly. Lotte's parents probably handle those details for her. And, it was almost impossible to use the telephone. I had to move the processors to my ears to use the phone. Also, there really was no difference with or without a coat or sweater covering the processors on my shoulders. When I wear a hat over my BTE processors, I hear fine. I do like the sound of the wind so it does not bother me if it is there or not.

But, after I thought about it for a while, I realized that the distance from my ears to my shoulders is probably greater than for a child like Lotte. And the space from shoulder to shoulder is a greater distance on an adult when compared with a child. So, Lotte's processors are probably closer to her ears than mine are when I wore them on my shoulders. That may change as she grows. I still got "surround sound" no matter where the processors were located.

My advice to Lotte's parents was to let Lotte make the choice how she wears her processors. Why change something if it isn't "broken?" It should be her choice to move her BTE's to her ear. She may change when she gets older for convenience, or when she wants to look good, or when she sees how others wear theirs, etc. She does see other children with BTE's on their ears with amazing contraptions to keep them there but her father says she will follow her own way. She does not complain and is a happy seven year old going to school, interacting with friends and family, and even playing the piano. I really do not not think it should be an issue because she is hearing sounds, communicating, and is getting surround sound. There really is no "right" or "wrong" way to wear a cochlear implant processor as long as a person can hear!

To my readers, if you are a parent of a child that wears cochlear implants or hearing aids, an adult CI user, an audiologist or other health professional reading this, please do two things for me:

1. Leave a comment on your thoughts or experiences on this post for Lotte and her parents, AND...
2. Go visit Lotte's blog and say "hi!" She'd love to hear from you!

A Must Read....Jennifer's Post

My friend, Jennifer, posted a very moving and poignant post yesterday.....it is a must read! She shares her bilateral cochlear implant journey from her heart at SURROUND SOUND...

Part II - The People I Meet - 2009 HLAA Convention

Here are a few more pictures from the Convention. I don't want to leave anyone out but I didn't get pictures of all the new people I met there.Barbie & Ken (Sunny & Captain Mark Brogan)

I finally got to meet Mark's wife in person at the Convention. She is a sweetheart! And is so supportive and understanding of Mark's hearing loss. They make the cutest couple, don't you think?!!!

Sandy Cohen, Director of the Library Services for the Deaf & Hard of Hearing at the Nashville Public Library

Sandy has a BIG heart for the deaf & hard of hearing. She has worked hard for 10+ years at the Nashville Library to make sure that the deaf & hard of hearing have access to EVERYTHING they need. You name it, she has it. The Nashville Library Services for the Deaf & Hard of Hearing is the largest resource on this side of the Mississippi River. If you are ever in Nashville, this is a "must-see" activity, as well as the rest of the library, which is a gorgeous facility in the heart of Downtown Nashville.

Thom Roberts and I

Thom is the Executive Director for the TN Council for the Deaf & Hard of Hearing, which meets four times a year. I met him two years ago when he asked me to serve on the Council with him. He is also hearing impaired and amazes me with all that he does!

Valerie, Jenna, & I

Valerie and Jenna are mother & daughter and this was their first convention experience. I love these two ladies! Valerie has bilateral cochlear implants and got them AT THE SAME TIME several years ago (she's a brave woman)! Jenna is so supportive of her mom and reminds me of how thoughtful and considerate my own kids are for me with my hearing loss. I met them in Gatlinburg (which is only about 40 minutes from my house) last year when Jenna had a dance competition. Valerie writes a blog at Tales From A CI Gal about her CI journey.

Karin Robertson

I met Karin a few months ago when she started coming to our HLA of Knoxville meetings. I found out later that she was a past President of our chapter! She is still involved with the deaf & hard of hearing and works for the Tennessee School for the Deaf in Knoxville.

Me with Zac LaFratta

I met Zac last year at the HLAA Convention in Reno. He is going to Gallaudet University to become an audiologist. And he has a hearing loss as well. There is no limit to what anyone can do! There were several audiologists and hearing professionals at the convention, which amazes me because I thought one needed to "hear" in order to be in these careers.

Rosemary Tuitte and I

Another amazing woman! Rosemary is a regular participant in the HLAA CI Chat on Monday nights. We've chatted online and traded emails so it was such a delight to meet her and her hearing dog, Janet.

Jennifer Thorpe, Jeffrey Johnson, & Mike Turner

This picture was taken at the Volunteer Dinner the night before the Convention. Jennifer, Jeffrey and I volunteered (along with several others) at the HLAA Convention Table in the Nashville Airport the day before the Convention started. I met Jeffrey briefly at the Tennessee Walk4Hearing in Chattanooga the month before. We had a great time talking while assisting and greeting people flying in for the event.

Mike Turner and I have been friends for a while and he spoke at one of our chapter meetings about videophones and Hands On Purple VRS (Video Relay Service) about how the deaf, hard of hearing and even the hearing customers can have access to high quality communication services through video relay.

Me with Mike Turner's Wife, Colleen

Here I am with Mike Turner's better half, Colleen. We met for the first time this past February when I was in Nashville for a Council meeting and hit it off right away. I felt like we had been friends for years! Colleen was at the Convention every day, helping Mike with his booth in the exhibit hall. Colleen & Mike both have hearing losses and make a great couple.

Arlene Romoff and I

Arlene wrote the book "Hear Again" about her cochlear implant journey and how she regained her life back in the hearing world as a late deafened adult. This was our first meeting!

Deb McClendon and I at the Birthday Party Celebration

Deb & I also met last year in Reno. She is a bilateral cochlear implant recipent and is a hoot! She is very involved with her chapter in the San Diego, California area.

Tom Vorjohan The Magician

Tom provided some magical entertainment for a day in the exhibit hall. His tricks were incredible and amazing! He is also my neighbor and has a wonderful family. I always ask his kids to do a trick or two for me when they come to my door selling fund raising items for school! It must be fun to grow up with a magician in the house!

AND.....ELVIS!!! (Ken Arcia)

Part I - The People I Meet - 2009 HLAA Convention Pictures

The 2009 HLAA Convention in Nashville has come and gone but the memories remain.....here are some pictures for you to enjoy!

HLA of Knoxville Chapter

This is my local chapter (click on the above name to access our Chapter blog) and I was so pleased that some of our members were able to come and experience this convention. Every time I saw one of them, they looked like they were having a great time!

Mark Brogan and I

I am so PROUD of Mark! He shared his story at the Opening Night Ceremony about how he lost his hearing in both ears as a result of a suicide bomber in Iraq three years ago. When he first started coming to our meetings in Knoxville, I knew that there was something special about him. His story is incredible and he has been through a lot. His wife, Sunny, is his biggest cheerleader and they will be on the cover of the HLAA magazine in the near future.

Sam Spritzer & I

Sam is a very special online friend. We met each other via my blog in April of 2007 when he was starting his cochlear implant journey. We've kept in touch regularly online and he has a blog HERE. He had recently had scare last week with a heart attack and is so thankful to be alive. This picture was taken at the Nashville airport where I was volunteering and was our first meeting in person. I knew who he was right away when he started walking towards me with his smile!

Me with Judy Martin
Judy is the President of a HLAA Chapter in Florida. We've kept in touch online for quite some time. She has been a great help answering my questions and giving me support for the Knoxville HLA Chapter. It was fun to finally meet her in person!

Tracey & Susan
These two beautiful gals were my roomates this year. This was Tracey's first convention and she was very interested in the seminars and exhibits. Susan is the first person that I met with a cochlear implant and was the one who was so supportive and helpful when I started my CI journey. She has a blog HERE about her CI Journey. Both of these gals work as nurses in my ENT/CI doctor's office, so I was well taken care of!
Debbie & Steve Bottles
This wonderful couple are a sister and brother team from Idaho. I met them online in the HLAA CI Monday night chat and they are just as charming as they look! They both have cochlear implants and received them together at the same time a few years ago. And doing great! They have a blog as well at (Insert Blog here)
GIRLFRIENDS! (Click on their names to access their blogs)
Left to right: Me, Abbie, Tina, and Jennifer
I met all three of these gals via blogging. Abbie and Jennifer were my roomates last year and are great fun. Joining us in this picture for the first time is Tina from Washington, D.C. who writes about her young son's cochlear implant journey. Tina is a GREAT advocate for her little boy and is doing everything she can for him and other children with hearing loss. Abbie was the Convention blogger this year and you can access the Convention Blog HERE. Jennifer is the current President of the Nashville HLAA Chapter and had a beautiful welcome speech on Opening night. Sir Tom, Me, and Big Bear
I met these two men last year in Reno and and also online in the Monday Night CI Chat room. They both have cochlear implants (Tom has one and Big Bear has two.) Sir Tom and his wife, Judy, have been guests in our home twice this past year and are such a great couple. They brought their Wii the last time they came and we played games during their whole visit! Big Bear (Wayne) is has been part of HLAA for over 20 years and lives in New Jersey, working for Sprint CapTel.
My Brother, Doug!
I was SO excited when my brother decided at the last minute to come to the Convention for one day! Doug and I are the only ones in our family with a hearing loss. He came specifically for the Hair Cell Regeneration Symposium on Friday, attended some workshops and visited the exhibit hall. He would have liked to have stayed another day but was around long enough to experience what HLAA has to offer and meet some HLAA friends.
Just me and my Hubby!
Last, but not least, is a picture of my other half! The Convention was close enough to home that he was able to come over for one day. It was such fun to introduce him to the Convention experience and share how much it means to me. He also brought a friend from church, who wanted to get some information about putting in a loop system.

I don't think I stopped smiling for days! My face hurt from all the smiling, laughing, and talking we all did! But it was such a wonderful and uplifting time. I have more pictures to share but will save them for another post since it is challenging to upload so many at one time. Until then, enjoy!

The Wellspring...: Ear number two!

Below is another blog that I like to read. Some of it is hearing related but mostly concentrates on their family and pictures. This couple adopted their daughter from Quito (I think) and she went bilateral today! Click here to see more! The Wellspring...: Ear number two!

The Main Event of the Year.....

....is one week away! It's the Annual HLAA Convention 2009 in Nashville, Tennessee from June 18th - 21st at the Gaylord Opryland Hotel and Resort. Ever since Jennifer and I went to our 1st HLAA Convention in Oklahoma City, Oklahoma, we promised ourselves that we would not miss another convention. It was a life-changing experience for both us to meet with other people "just like us." And for the first time in our lives, it was a "perfect world" because we didn't have to struggle to hear or understand what was going on around us. Every single session and event is transcribed, captioned and interpreted. I, along with many others, look forward to this event and we are ALL getting excited about being under one roof again, seeing old friends and making new ones!

This year promises to be a FANTASTIC convention. I've "heard" that over 400 rooms are registered and that doesn't count the persons staying in nearby hotels or who live in or around Nashville. The workshops and seminars are wonderful and very informative. The Opening night features Vint Cerf, from Google who is considered to be the "Father of the Internet." He also has a hearing loss and his wife, Sigrid, has bilateral cochlear implants after wearing hearing aids for 50 years. I cannot wait to hear their stories and get their autographs on my HLAA magazine!

The Convention is also the 30th Birthday Celebration for HLAA and there will be a Birthday Party on Friday night. My neighbor, Tom Vorjohan, is part of the "entertainment" for the party and promises to be GREAT!

There is also a Research Symposium sponsored by the Deafness Research Foundation where they will be giving an update on the Latest Hair Cell Regeneration Research. My brother, Doug, is very interested in this research and is traveling from Ohio specifically for this. I'm so excited that he is coming and cannot wait to introduce him to the Convention experience and to my friends!

The Exhibit Hall is something to see & experience, as well. One can see and try many different assistive devices, cell phones, telephones, gadgets, weather alerters, fire alarms, and other new products and get a wealth of information on how to deal with and cope with hearing loss. Hearing aid and and cochlear implant manufacturers will have booths, too, for support and information. You can find out more about the exhibitors HERE! Even though the registration has closed online, anyone can still come and register in person for a day or two on site. And, entry to the Exhibit Hall for visitors is FREE with a pass that can be obtained at the registration desk. See http://www.hearingloss.org/ for more information.

An offsite trip to the Grand Ole Opry is planned, too! And if there is time, there is much to see and do around Nashville. I would encourge anyone to stop by the Nashville Library Services for the Deaf & Hard of Hearing in Downtown Nashville to see the Deaf & Hard of Hearing Section. Friday morning would probably be the best time for this trip. Due to recent budget cuts, the LSDHH library is only open from Mondays through Fridays from 9 a.m - 2 p.m. or by appointment. Call the director, Sandy Cohen, at the library at (615) 862-5750 for an appointment to see this particular section. It is WORTH the trip!

If you cannot make it, you can keep up with the Convention through the Convention Blog starting on June 18th. Abbie Cranmer, is the featured Blog Host this year and she is absolutely wonderful. She was one of my roommates last year in Reno and has a great sense of humor!

I plan to be there early on Wednesday morning at the Nashville airport to greet anyone coming in that day! And will work at the Convention Booth until 4 p.m. I'll be the one with a big smile on my face (and will be wearing RED, my favorite color!) Hope to see you there!

P.S. If you are coming, leave me a comment or email me at ldpullinsATgmailDOTcom so I can look for you!

Another Friend Goes Bilateral!

Another friend has taken the step to bilateral hearing! I met Becky a few months ago because she had many questions about having two cochlear implants versus one. She traveled to Nashville on Sunday from Knoxville with some members of her familly and had her second CI surgery yesterday! And is doing amazingly well. Check out her blog here and give her some encouragement! She will be activated in three weeks on June 9th!

Paying It Forward...One Step at a Time...

There is an old Chinese Proverb that goes something like this:

If you want to be happy for an hour,
Take a nap.
If you want to be happy for a day,
Go fishing.
If you want to be happy for a year,
Inherit a fortune.
If you want to be happy for a lifetime,
Help Someone....

Yesterday I particpated in Tennessee's very first Walk4Hearing held in Chattanooga along the beautiful Riverwalk at Chattanooga State Technical Community College. I've participated in many walks for different causes over the years. But, this walk was a very special one for myself and many others because we live with the challenges of dealing with a hearing loss or know someone who has one. I loved this particular proverb when I heard it because it doesn't take much to help someone. A person doesn't need to be rich or famous to make an impact on another person's life. There is research out there that shows that one lives a happier, healthier, and longer life when they live selflessly and give of themselves unconditionally.

For the last 30 years, HLAA has made a difference for the deaf & hard of hearing. HLAA works behind the scenes and advocates, educates, and focuses on issues that are important to individuals with hearing loss. All proceeds from this and other walks held across the U.S. this year will be used to fund local and national programs to help people with hearing loss and to raise public awareness of the challenges that they must confront each day. I wish I could name all the accessibility programs and standards that they are responsible for that benefit so many deaf & hard of hearing persons but that is another post for another day. Recent health statistics say that more than 36 million persons NATIONWIDE are affected by hearing loss.

Over the years, I've been very fortunate to have a wonderful support system with my family, friends, health professionals, coworkers, and even from strangers. Not everyone has that and that is where HLAA comes in at the national and local level. I am PASSIONATE about HLAA and it is no accident that I am in a position to "pay it forward" and help others with the challenges that they face every day dealing with hearing loss. This walk was so dear to my heart and with the help of family, friends, and even people who read this blog that I haven't met yet, I was able to meet BOTH of my fundraising goals!!! My original goal was $1,000 and I met that quickly in a few weeks. So, I set a new goal of $1,500 and surpassed that last week! Our HLA of Knoxville Chapter had a goal of $3,000 and we were able to raise $2,235, which is 75% of our goal! THANK YOU!!!!

You can see pictures here and here and here!

I'm still tired and on a "high" from seeing everyone and participating in this event. I've been busy this year traveling with my husband for our business, advocating for the deaf & hard of hearing, working with my local HLAA chapter, and working with Nashville and the National HLAA to prepare for the HLAA Convention in Nashville next month. But, my schedule is starting to slow down a little and I hope to resume my regular blogging again. Thanks again for all you do for the deaf & hard of hearing, for when you help someone, you make a difference for a lifetime!

More pictures to come soon!

A Very Special Walk

Please CLICK HERE to see my Walk4Hearing Page!

On Saturday, May 16th,I'll be participating in the Walk4Hearing in Chattanooga on the beautiful and colorful Riverwalk at the Chattanooga State Technical Community College in Chattanooga, TN. This very special walk is a fund-raiser to support the Hearing Loss Association of America. I am walking this very special because hearing loss is a public health issue that is third in line behind heart disease and arthritis. If you have been reading this blog for the last few years, you are familiar with my "Dance With Sound." I have lived with a severe/profound hearing loss since the age of 2. I joined HLAA when I started my cochlear implant journey and haven't looked back since!

HLAA is a lifeline for those who are affected by hearing loss. I would not be where I am in my "dance" if it wasn't for the support of family, friends, and HLAA. I've been to two HLAA conventions in the last two years which have been life changing for me. For I have found my "people" because they, too, know the trials and struggles of living with a hearing loss. Through HLAA I have made many long lasting friendships and gained a wealth of information related to hearing loss.

The Walk4Hearing goal is to increase awareness about the causes and consequences of hearing loss. By raising funds, HLAA can provide information and supprt for people with hearing loss and make a difference. It is estimated that 31 million Americans are affected by hearing loss and 2 million of them are deaf. Many of them lack the much needed information and support that they need as they struggle to fit in the hearing world. HLAA advocates for those with hearing loss to enable persons to be all they can be and live full and productive lives.

Someone asked me a few weeks ago that if I could name the one person that has made a difference in my life, who would it be and why. I've been blessed with a great support system throughout my life with family, friends, teachers, mentors, coworkers, health professionals, and even strangers who were understanding and willing enough to help me when I couldn't hear or "get the message." But the one person that has influenced my life the most would be my mother. She was such a great advocate for me and my younger brother, Doug, and did everything in her power to help us be the successful persons we are today in spite of our hearing loss. And because of her love and dedication, I am now in a position through HLAA to "pay it forward" and advocate for others with hearing loss who may not have the support system they need to succeed. Mom lost her battle to cancer 17 years ago on April 8th but is still very much a part of my life today. So, on May 16th, I will honor and remember her by wearing her picture on my t-shirt as I walk and advocate for hearing loss.

My team on the Walk4Hearing page (Chattanooga, TN) is the Knoxville Chapter of HLAA. Our team goal is to raise $1,000 and I have set a personal goal of raising $500.00. I hope to exceed both of those goals. I am not used to being on the receiving end of fund-raising efforts and do not like to ask for money from friends & family, especially during these difficult financial times. But this is for a good cause and I know that some of you will be glad to help! Your donation in any amount will be greatly appreciated and you can give anonymously if you wish.

If you would like to make a donation by personal check, please leave a comment and I will be glad to give you my email & address information so you can mail your contribution to me. All checks should be made out to Walk4Hearing. Donations are tax deductible and you will receive an acknowledgement from HLAA for your tax records.

Your donation will mean so much to me! Thank you from the bottom of my heart for your love and support for hearing loss.

Nerve Deafness

I originally wrote this post in my "Book Blog" (which I rarely write in anymore) on August 20, 2005 before my first cochlear implant surgery and thought it was worth repeating.

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

Can You Read My Lips?

The above picture needs a little explanation. (Smile!) My husband and I are currently in Los Cabos, Mexico for a much needed vacation, our first in four years.! Traveling to different country poses some challenges with the different languages when one only speaks English. Here in Mexico, the natives speak Spanish as well as some basic English words. For someone like me, who is fluent in “speech reading,” it is hard to read lips when English is a second language because the natives don't move their lips to form their words in English. Steve understands when I cannot and is very good about translating for me. I’m thankful that I do not have to travel alone!

But, this week was a challenge when we decided to take the Cactus ATV tour in Cabo San Lucas, BCS, Mexico. Before we started the three-hour tour, we were all outfitted with bandanas that covered our noses and mouths, goggles, helmets, and Honda ATV’s! Everyone’s faces were completely covered, including our guide’s, to keep the sand and dust from getting in. I could not even attempt to try to understand our guide’s muffled broken English with the Mexican accent but was able to manage just by watching him and the others. Luckily, I had a 350cc automatic Honda All-Terrain vehicle and it was pretty easy to figure out and drive.

We had fun driving through the desert, mountains, canyons, and streams. We enjoyed the beautiful scenery, especially when we got to Migrino Beach. The huge waves in the Pacific Ocean were just beautiful as we rode along three miles of the spectacular dunes, cliffs, and white sandy beaches.

View from my ATV

I took it all in and just rode my ATV, with the wind blowing in my face. My very favorite sound is the sound of the ocean as the water ebbs and flows along the beach & rocks.

Migrino Beach & Pacific Ocean

Desert Sunset

More posts to come soon! Adios!

Veterans With Hearing Loss

Please check out this news article. . . this featured veteran is a member of my HLA of Knoxville Chapter and is a wonderful young man. Mark Brogan is helping HLAA reach out to veterans nationwide who have lost their hearing as a result of their military service.

HLAA is offering a Complimentary Membership in HLAA for Vets of OIF and OEF and a free HLAA Convention 2009 Registration to Nashville. Mark and I have been working with HLAA on this project. For more information, go to the Hearing Loss Association of America website and click on the flag on the right side.

I'm so proud of Mark and he will be a great advocate!

A New CI Friend

I continue to advocate and support others with hearing loss on a weekly basis and would like to introduce you to Becky! She emailed me a few weeks ago asking for advice on going bilateral since she already has a cochlear implant. To make a long story short, I met her in person last Wednesday night at a CI Support Group meeting and found her to be a delightful person, as well as her husband. And we connected right away. There is something about having an "immediate" connection with someone who has a hearing loss and knows what it is like. Becky's hearing journey and history is very similar to mine (diagnosed early, wore hearing aids all/most of our lives, mainstreamed in the hearing world, etc.) I encouraged her to start a blog about her journey so she can tell her story. . . .

Go HERE and give her some encouragement and support! (I also added her to my sidebar on the right)

President Obama's Name Sign

Just in! A student at Gallaudet University has given President Obama his name sign and posted a video on YouTube! I'm not sure how authentic it is but it looks great to me. It is subtitled for the deaf & hard of hearing.

Click HERE to watch!

Jackson Update!

Jackson with his Tennessee grandparents!

Here are a few pictures from the holidays! Steve and I flew to Texas to be with our grandson, Jackson, and his mommy & daddy. He is growing so fast and we miss him already. I loved hearing him "talk" and make his noises. He also "slaps" the hardwood floor in the house as he does his "Army crawl" and it is easy to know where he is. I even heard him cry after his nap behind a closed door! And he always smiles when we open the door to get him!

Jackson at 9 months

The Three J'sJackson standing next to his cribDoing the "Army Crawl!"