Christmas Letter 2004

December 2004
From DENISE

Unbelievable! Another year has gone by, and it’s time for us to get our annual Christmas letter out! It’s so
nice that the kids help me out with their “part” now that they’re
older.

We’ve been in Maryland 2 years now. I’m afraid I still have a southern accent though, and I don’t know that it will be gone anytime soon. I may have been born and raised in the Midwest, but I
lived in the South for 18 years!

We are still homeschooling and this is our 7th year. That means we do everything perfectly now! Obviously, that’s just a joke! Would you believe that I changed our science, literature, history and spelling curriculum this year? Would you believe I’m using 6 different curriculums total? Well if you know anything about ME, you know that this feat alone is a great accomplishment! I’m such a creature of habit! But I’m really pleased with the curriculums we are using for every subject now. The kids are also involved in co-op classes. Chris just finished the fall semester of Chieftain Christian Academy’s Friday co-op classes. Kyersten will be finishing up her first semester of Chieftain Institute in about a month. These were her first high school classes “for credit” with someone other than me teaching her, but she has really excelled. I continue to teach American Sign Language courses for Chieftain Institute and really enjoy the interaction with students who have an interest in the Deaf and hearing impaired.

Terry and I are now hosting a care group for our church in Frederick. We live about 40 minutes north of Derwood Bible Church. We meet with other DBC families who live in Frederick, or Frederick County and have Bible study and fellowship twice a month. It has been a wonderful way to really bond with some of the other families in our church.

I am also teaching adult sign language classes at my church. The Beginner level that I teach, really just provides the participants with a basic understanding of ASL, and we learn many phrases, sentences, and words in which they can greet a Deaf visitor or church member. It’s a way to “bridge the communication gap”, and I’m really pleased with the interest so far. I hope that everyone in the church will take at least this beginner level course at some point. The church staff has been very supportive and would like for me to continue offering the classes. I will be offering a follow-up course as well for those who wish to pursue more.

I have met so many incredible people this year! We enjoyed a wonderful SHHH convention in Omaha, Nebraska this past summer. It was so pretty there! It reminded me of where I grew up in Colorado with all the flat farmland and sections of grasslands. It’s so nice to get together with that many hard of hearing people and their families.

I am also enjoying participating in the Frederick County SHHH chapter that received its official chapter “status” this year. I am co-leading with a wonderful couple, Bob and Faith Arrington. They travel a good distance to come to the meetings each month and are my biggest cheerleaders. I have really enjoyed getting to know them better and through our efforts of trying to help other hard of hearing people learn how to better communicate and advocate, I have come to love and admire this wonderful couple.

I have also been blessed with new friendships through the different listserves I belong to, as well as message boards for various organizations that represent hard of hearing people. Some I have never met face to face, but I feel like they are dear friends regardless. Stretching from San Antonio to California, from Florida to Michigan – even Canada! The Internet is a wonderful blessing for those who have a hearing loss, as the telephone can be difficult to impossible to use. The Internet has been a wonderful way to exchange ideas, advocate and simply get to know each other. As much as my wonderful family loves me and supports me, I have needed the interaction from other hard of hearing people.

I am also a leader of an online Bible study for First Place Outlook Ministries. This is another door of opportunity the Internet has opened up to me, that was closed to me after losing my hearing. It had become very difficult to lead small group discussions as my hearing continued to deteriorate. I really enjoy teaching and encouraging young women to grow and mature in their faith. The Internet allows me to continue to be used in this way.

It seems funny to list as one of the things you are so very thankful for as being the Internet! But it has kept me from being isolated – of which I am very grateful.

Terry and I will be celebrating our 19th wedding anniversary this coming year. That’s hard to believe! He’s really the greatest man, and I’m so blessed to have him in my life. He has been an incredible source of strength for me in these past few years. He loves his job with SHHH (Self-Help for Hard of Hearing People), and pours himself into everything he does there. He truly has a heart for those who deal with hearing loss – whether it be the individual with a loss, or their families. Being the Executive Director has its challenges and stress, but I can tell you it’s the hardest job he’s ever LOVED.

My hearing loss really began to affect my life this year. In the past, I have simply learned some new coping mechanisms, or bought a new assistive listening device to overcome communication obstacles. But the progressive sensorineural loss that I have did indeed get to the point where it began to have a very negative impact on my life. Without hearing aids I am deaf. With hearing aids I can hear, but only if I can also see the face in order to speech read. It’s very strange to lose your hearing over a long period of time, as sounds disappear without your really knowing they’re gone! I lay my hand on the microwave in order to know when the popcorn has finished popping. I lay my hand on the dishwasher to see if Kyersten remembered to start it. I have to stare hard at the washing machine to see if it’s still running, etc. I stepped outside with the family when the celebrated cicadas arrived this year, only to hear silence. So I’ve had some trouble adjusting at times, but I always work my way through it with the support of my family and the Lord. I don’t know how people deal with hearing loss without God. I’m so glad that I can “talk” to Him whether I have my hearing aids in or not! This has certainly strengthened my faith, and that of my family as well.

On November 30th I was evaluated at John Hopkins for a cochlear implant. I failed all the tests – which was a good thing. I will have further tests at the first of the year. Perhaps my next Christmas letter, I will be letting you know what I am now “hearing”! That would be exciting!

I am really enjoying Christmas this year. The older I get the more that I appreciate family, and the holidays. It seems so unbelievable that God would send his Son to this world only to die for it! That’s certainly a great Christmas present! I wish hope and happiness for you and yours this year! Our family’s website is http://www.lightkeepers.net/ Lots of great pictures!

Denise

From TERRY

Since I am turning 40 in 2005, a big question for me is “will I remember this?” Sort of like, “will I remember writing this letter?” When you get older two things go, your eyes and … I can’t remember what the other one is. So, while I can still remember… I remember riding by car on an early winter morning by Central Park in New York City. Even though it was still dark, you could see the steam rising from underneath the streets as we later drove through an empty Times Square. On another morning I had breakfast in a restaurant overlooking a river in Grand Rapids where a fisherman had waded out and was catching salmon as they swam upstream. In the Spring I got to see one of the Great Lakes for the first time in my life. It was pretty impressive. One evening this Fall I was struck with how quiet it was as I walked beside the reflecting pool at the Oklahoma City memorial. I also got to see the peaceful countryside of Connecticut in the fall and the snow-covered Rocky Mountains on a day when it was 80 degrees where I was standing. All of this beautiful scenery was secondary to the people I met this year. I have talked to everyone from a homeless man in Penn Station to a rancher in Austin, Texas. I have also talked to hundreds of the members of SHHH who are a family for so many people who struggle with their hearing. I will not forget that this has been a year of loss as well. In the last 18 months I have lost both of my grandmothers. The founder of our organization, Rocky Stone, passed away in August. His loss was felt by thousands of people around the world. I have also been privileged to read several great books this year. Books on history, leadership, psychology and theology. Ron Chernow’s book on Alexander Hamilton and David McCullough’s book on Harry Truman stand at the top of the list for me. “Soul Survivor” by Phillip Yancey, “Telling Secrets” by Frederick Buechner and “Don’t Waste Your Life” by John Piper were booksthat made me think. Of course, there are family scenes that I want to remember as well. I will never forget seeing Kyersten work so hard to save money for her new little dog. I will not forget her giving up her fun time in youth group so she can work with kids in AWANA and help them learn about God. I will not forget the guts Chris shows by getting up so cheerfully in the morning to do his paper route. I will not forget that he continues to play me one on one in basketball without fear, even though I am bigger than him (for now). I want to remember how Denise has helped so many people this year, even as she has struggled with her severe hearing problems. She has helped many in person, yet she has helped countless people through Internet groups and via email. Denise has made a difference in the lives of so many people, some of whom she has never met face to face. So, I hope I will remember all of these things, and I guess writing them down will help. What were we talking about?

Terry

From KYERSTEN

Hello friends and family!
Merry Christmas! I love Christmas! Presents, candy canes, good food, Christmas lights, and it is God’s Son’s birthday! (That is a pretty big deal.) This year for Christmas we are going to Florida to visit my grandparents. (On my mom’s side) They have retired there. This will be my first Christmas away from home but my grandparent’s home is my home away from home so it will not be weird. No white Christmas this year though! Florida is HOT…even in the winter! We’ll be enjoying sunshine and the pool while most of you will be shoveling snow. Not to rub it in or anything…
We still love living in Maryland. Our town, Frederick, is so pretty with the mountains in the distance and everything. And we have an awesome church, which by the way just bought new land! Plus there is so much to do such as hiking trails, rivers, Washington DC, Hershey Park, Amish country, Gettysburg, great places to eat and much more! (Wow I sound like a brochure).
I am a freshman in high school this year. We’re homeschooling and I am also taking Chieftain classes. I am taking Sign Language 2 (taught by my mom) and Spanish 1. I don’t overly enjoy Spanish, mostly because I am afraid I’ll totally fail the class, but I am making pretty good grades, so I am more relaxed now. I really like my teacher, Mrs. Richardson. I also LOVE my Sign Language teacher, of course. At home I am doing math…and just when I thought math couldn’t possibly get any worst it did…. in the form of Algebra 1. Also I am doing Grammar, Music Appreciation, World History, Physical Science, and Total Language Plus. Total Language Plus is my favorite. It is a program where you read a book, and from that book you get spelling words and vocabulary words. Very fun! The literature studies that I am doing are The Bronze Bow, A Wrinkle in Time, Around the World in 80 Days, and To Kill a Mockingbird.
This year in church I am in Sr. High. I am also a Leader-in-training in AWANA. So, I don’t go to the Main Event on Sunday nights but I do go to special events, the Bible study, and I went on the Sr. High retreat. The Sr. High retreat was fun, we learned all about how to manage money. So I can write checks, make deposits, etc. Now if only Mom and Dad would give me a credit card….
Being a Leader-in-training (LIT) is so much fun. I get to listen to verses from kids, talk with them, and help keep order during the oh-so-loved “Game Time”. I really enjoy being a LIT…the kids are so much fun.
Our family has started a Frederick Care Group this year. Care Group is small group of families meeting for Bible studies in people’s homes…in this case ours. We have lots of nice people who come and while the adults do their Bible study, the teens and kids hang out.
Also new this year my brother and I are doing a paper route. I absolutely DO NOT like it! It is only one day a week but that is enough! But, I get fifty dollars a month so it is mostly worth it. I need it because Ebony is so expensive.
Ah yes…Ebony. Ebony is a wonderful little Pomeranian I saved my money ($250 ) to adopt. Anyway, to make a long story short, she has health problems no one knew about before (including the rescue we got her from…so it is not their fault) and has cost me a lot in vet bills. But she is worth it because she is such a sweetie. I also have my two cats, Mandie and Kiki. And not to forget my one rat, Mercy, and one fish…. named The Fish. (Am I not creative?) I still foster small animals but not as many now because I am so busy…. high school is a lot of work!
This year we went to SHHH’s annual convention in Omaha. It was lot of fun and we met some really great people with hearing loss and their family members. It was the last time a lot of people were able to see the founder of SHHH, Rocky Stone, as sadly, he passed away later in the year. He meant so much to my mom and dad. We were able to attend his funeral. There were a lot of people there who loved and miss him.
Also this year we were able to go to Disney World for the first time! A very nice man by the name of Larry Kavanaugh from the Orlando SHHH chapter, gave us free tickets. We were Family of the Day at Epcot…we got to help “open” Epcot up for everyone else! It was a lot of fun. My favorites were Mission Space (even though SOMEONE in our family crashed us…) and Space Mountain. When we got on Space Mountain I heard this person screaming the whole time. As I listened to the nonstop screams I realized it was my mom! When we got off her hair was standing straight up and she could barely walk…. I don’t think she enjoyed the ride as much as we did.
My brother has been teaching me to play football. I don’t think I realized it until I tried to tackle him…but he is taller than me now. Can you believe it, my little brother is taller than me! They grow up so fast! Anyway, I am getting so good at playing football…. okay that is not quite true…. I am getting BETTER at it.
Well, that is a few of the things that have gone on in my life this year. I would love to be in contact with everyone ALL year so send me an email if you ever get the chance at
Sign4GodTeen@lightkeepers.net.
Much love to everyone,
Kyersten

FROM CHRIS

Hey guys! Mom asked me to write part of the Christmas letter this year telling how I did this year.

Well if you remember last year I talked about when I was in AWANA Club and about to get my last award. Well I did and after that I moved up to Jr. High youth group. It is for 7th and 8th grade. Youth group is fun! At youth group one of the things we do is something called “The Messy Game.”(It usually has something to do with Jell-O and whipped cream.) I recently volunteered and got the chance to eat a sour pickle and drink Pepto-Bismol before everybody else beat me. Also I tried to hit a target with a spitball and got to have the shame of seeing a woman beat three boys. The woman happened to be Mrs. Guy, one of my leaders who, I didn’t know could do that! We also get to do devotions from a nice magazine they give us called Youth Walk. It is a nice magazine that covers everything a teenager wants to know but from a Christian perspective. After we do our devotions and memorize a verse that goes with it we go over the lessons at youth group that night.
I also recently finished Adventure Club. It is when homeschoolers from our area come together to take different classes. I had three classes, “Dissection,” “Presidential Elections,” and “Tennis.” In “Dissection” we got to see the insides of a sheep’s heart, a sheep’s brain, a sheep’s eye, and a sheep’s kidney. We saw the insides a learned how everything worked. It was fun to find out stuff you didn’t know about the different parts. (And when are you going to get another opportunity to cut a brain in half?) It was also fun because soon after that we played one of our favorite trivia games and two of the questions had to do with those parts. In “Presidential Elections” we learned about different things like: where the president’s money to run his campaign comes from, different advertising techniques, and had a special speaker who was from UPS and talked about his job to raise money in the elections. Also it was a shame to see Maryland lose to Kerry when North Carolina, the place we used to live, voted for President Bush. In tennis we all loaded up into a van and went to a tennis court not to far away. We practiced serving, back swinging, and returning serves.
We are using Saxon Math again this year and I am in the 87 book. We are doing a new subject this year called “Music Appreciation.” We learn about different music artists and write a report about them. I am also doing Grammar, Total Language + (Literature stories of The Incredible Journey, Rifles for Watie, Treasure Island, and Johnny Tremain), General Science, World History, Art 1, and P.E.
I also have a new bird that is a Sun Conure that is a beautiful green, yellow, orange, and red. My friend Chris got the Sun Conure from a friend who had named the bird Chris before they gave it to my friend, Chris. So then my friend Chris got a huge standard poodle and needed to find a new home for his bird “Chris.” So Chris, needing to find a new home for his bird, “Chris” decided to give the bird to a good friend named Chris, Me. Confused? So Chris gave “Chris” to me, “Chris” and we are now very good friends. He is a loud bird sometimes, and I don’t really mind even when some other members of my family do. My mom also likes him because he is one of the only birds she can hear. My bedroom is in the front of the house where you can clearly get a good view of the driveway. My bird always warns us when someone is coming while our dog, Max, is snoring lazily nearby.
So that was a summary of some things that happened to me this year. I hope you enjoyed my part of the Christmas letter. I’ll be sure to do it again next year and tell you more crazy things that happened to me.

From Chris

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End of Year, 2004

This time of year gets me to thinkin’ about 2004. Please don’t get me wrong, I know what Christmas is really all about, and my family and I celebrate it and enjoy Christmas. But as it also occurs at the end of the year, I am usually already “reflecting” at this point. 2004 has been a difficult year for me, but life’s greatest “surprises and blessings” normally occur side by side of trials. As far as my hearing goes, it worsened as much in one year as it had in the past 10 years. (Or so my family and audiologist tell me…)

Ever feel like you’ve adjusted only to have to ADJUST again? “Ok… I can live with where I’m at…. I’ve learned to be pro-active and not re-active… I am coping well…”

Then even YOU notice things aren’t as clear with your hearing as it was months ago? Sigh. But you know? Inevitably, “blessings” accompany “hardships”. They are “hand-holders”, and walk side by side in my life. I’ve made new friends, have learned new things. I’m maturing and growing… all very good things! I’ve learned to listen, question… even pester those who’ve already “been here”, and have lived what I am living. Happy holidays to my “bhnews family”, and here’s hoping your life’s reflections are as sweet…

Denise P.
©2006 Hearing Loss Diary

Step One: Cochlear Implants

On Tuesday Hubby and I went to Baltimore for testing. It takes awhile to get “in” there. I was asked to post a snippet about it.

Terry and I headed to Baltimore around 7:00 a.m. We’d been gone for about 30 minutes when his cell phone rang. The chief audiologist at John Hopkins child was sick and she couldn’t come to work today. We could postpone, or see someone else. Needless to say we chose someone else! But the appointment was moved from 10:00 to 1:00. So Terry said, “I took the day off, so let’s hang out at the Inner Harbor for the morning”. Being as stressed asI was, I was easily “pliable” and agreed. We had a great time and bought a few stocking stuffers for the kids. We ate at the Cheesecake Factory and I had the biggest salad I’ve ever had put in front of me.

At 1:00 we checked into John Hopkins. I walked right past security because I didn’t hear the guards hollering, (the place is cavernous!) so Terry had to grab my arm causing me to drop all of my paperwork and MRI scans. I thought,”This is not starting well!” Grin!

We then checked into the Hearing Center on the 6th floor and I began 3 hours of testing. We thought it was 90 minutes, but I failed the initial tests right off. So they took me directly to stage 2. Stage one is your basic hearing tests of beeps. Stage 2 was simple words, rhymes, and open sentences done with, and without background noise. The unfortunate thing about these tests is that there was no face to read! In the sound proof booth, the voice was a man’s voice on tape! Terry was really cracked up because I kept leaning as far as I could towards the wall where the sound was coming from. He thought I was going to fall out of my chair! I did these tests first without my hearing aids and then with my hearing aids. I did pass, Woo-HOO! Or rather, I failed. Which is a good thing. NowI have to be cleared medically (I have a pronounced heart murmur and am aTBI survivor so they “may” find complications …. TBI: traumatic brain injury) then I have to be seen by a psychologist so they can screen that I have realistic expectations. (What? It doesn’t count that I’m married to one!?) Then I have to have a device information class which will make me anexpert on CI’s (or so I’m told) Then I have the surgery.

Whew! We are hoping that if all goes well I might be able to do this by late Spring/end of school year. The doctor and tests said based on the level of loss in last 3 years I will be completely deaf in another 3 years. (estimate) As late at night my speech is already deteriorating, they hope to do something before then. (Me too!) Their findings also showed that I have an unusual aptitude for reading lips, gestures, context, etc. I don’t know about that, as I think most HoH people read lips. I’ve met some that are phenomenal! Like “SueThomas F.B.I”! I’ve also taken a workshop or two with Gael Hannan too. (Is she the best or what?) I think because I’ve lost my hearing so slowly and have just “self taught” out of necessity. I don’t “GET” it all though. Just ask my family! I started repeating some of the stuff I THOUGHT I heard so that they can understand what it “sounds like” to me! (Like the time Terry asked if I put gas in the car and I tho’t he asked if I HAD gas in the car — he’s still nursing a sore arm!) Some HoHpeople read lips VERY well — I’ve met a few. Some do not. I’m notsure the “why” of this. I think I fit in between really. I miss far too much to think I’m “great” at it. If it happens, the implant will be done on “one” ear. This is usually the worst one. My ears are now “equal”, meaning I don’t have a “good ear”. So the choice will probably be mine. Immediately after surgery, I will be completely deaf in that ear for 4-6 weeks. Oh joy. Anyway, I’m just glad it’s all behind me. WHEW is more like it. Keeping my fingers crossed the rest goes well.
Denise Portis
©2006 Hearing Loss Diary