The Year in Review

In place of a Christmas letter, I am going to post this on our blog, and cover what has happened this year with each of us. Hopefully this will be an easy and convenient way for people to See what we have been up to. Overall, it has been an eventful year, to put things mildly. A lot has happened with our little family, but it has all been a lot of positive growth for us.
Eliza has grown up from our little baby girl to our little toddler girl. I can't believe how much has happened with her. She received her hearing aids in January, and still wears them. She has gotten to the point that if she sees them, she will bring them over to us and want us to put them in. She is just doing what little toddlers do. She is walking all over the place, and becoming more and more independent. She has also started to develop an interest in everything traditionally girl. She loves little dolls, and phones and shoes and clothes. She is also coming along in the communication department. It seems that everyday she is learning a new sign. She also repeats a lot of sounds she hears, including her favorite, "Uh-oh". Johnny is her hero, and she follows him around nonstop and wants to do whatever he is doing. She is my favorite girl, and nothing makes my day more than when I come home and she comes running over to me to give me a hug and a kiss.
Johnny has been through quite a lot this year. Those of you who follow this blog know that already. He received his hearing aids in January, and they did little to help his hearing. However, he continued to pick up signing like crazy. It's been hard for mom and dad to keep up. In June, he went in for surgery for his cochlear implant. He was so brave! The surgery went well, and he received his processor a month later. His mapping was a struggle. Not because our audiologist isn't very good, but mostly because he did not want to just sit there and get mapped, and we had issues with our processor from the start. These things have been worked out, and he can now hear at around 25-30 dbs with his processor on. Now, whether he likes hearing is another question. Most of the time he doesn't seem to mind, but from time to time, he just does not want to hear, so he won't keep his processor on. We try to get him to keep it on, but he is two almost three, so it doesn't always work out. His main mode of communication remains signing, which we think is great. It is definitely a challenge to try to keep up with him on his signing, but we are doing pretty good, I think. In January, he will be starting pre-school at JMS, which is the ASL preschool in our area. We are very excited about this. We think he will learn a lot of very important social skills, and he will appreciate associating with kids who are deaf and sign just like him. He is my little hero, and it has been amazing to watch how he has coped and adapted to all of this through this year. He always has a smile on his face, and it's the kind that lights up the room.
Erica just keeps trucking along. She is pretty much the most amazing person in the world (even more amazing than Barack Obama). She has taken everything this last year in stride. I have just been amazed to sit back and watch as she has patiently gone to battle to get done what is right for her kids. She currently is staying home each day with the kids, and I am so thankful for that blessing right now. She makes it a point to find different activities and crafts to do with the kids each day. I've been amazed to watch how she has made choice after choice to benefit our kids, while sacrificing herself. Like when we decided to start attending the deaf ward in our area. It was out of her comfort zone, but she knew it would be best for our kids. That being said, everyone in our new ward has gone out of their way to make us feel welcome.
I continue to stay busy at work and at school. I can see the light at the end of the tunnel for school, and can't wait to reach it. This last semester I also started the Seminary teacher preservice classes at the institute. I love the class, and I really hope it works out. I can't picture myself really doing anything else.
The Lord has blessed us in abundance this year. Through all of our challenges, we have grown and have seen the Lord's hand at work. I am grateful to Him for my family that makes this life worth living.

Merry Christmas!

Well, it was Christmas today, and I got everything I really wanted. The thing I wanted most was seeing my kids happy on Christmas morning, and they were. We had a nice evening at home for Christmas Eve. We ate a nice little family dinner at our little table. It was very sweet. Then we opened our Christmas Eve gifts, which are always pajamas. The kids also each got a blanket with their PJ's. Johnny got a firefighter blanket, and Eliza got a Cookie Monster blanket. They both loved them. Johnny wouldn't let anyone touch his. After we opened the gifts, the kids got a Christmas bath (which is the same as a normal bath, just at Christmas time). After their bath, we put them in their new pajamas, and we all snuggled down and watched a movie about Jesus, to help the kids realize what Christmas is all about. After the movie and some stories, it was time to put some milk and cookies out for Santa, then off to bed. It was a Christmas miracle, both kids were in bed and asleep before 8:00. It was awesome, and probably the last year it will happen.
We all got up at 6:30 this morning, and saw that Santa had come. Johnny was very excited as he opened his gifts. He loved his new fire engine and fire helicopter. However, the gift that got him the most excited was his Batcave. He started opening it, and when he saw what it was, he couldn't get that paper off fast enough. He wanted it out of the box right away, and has played with it almost nonstop since. Lesson learned for next year: have Johnny open things like clothes and backpacks before the toys, otherwise he loses all interest.
Eliza was excited about her baby doll stroller and her little baby doll, but she got really excited when she saw the Elmo in her stocking. She saw that and started pointing up at her her stocking and signing want. It was pretty cute. Her other favorite part was all the candy in her stocking. She kept bringing different candies to us and signing candy and open. However, like responsible parents we did regulate how much she could have.
After we opened gifts, we began the marathon of family visits that occurs every major holiday. We started this time and my dad's house, so Johnny could see his cousin Joseph before he went to his dad's. The two were kind of funny. Once Johnny showed up with his helicopter, Joseph only wanted to play with that, which was fine because Johnny only wanted to play with Joseph's Buzz. Kids are funny that way.
After we went to my dad's, we went to my mom's to see her. They always have snacks out on Christmas, and they just wait for people to come over, so it is really laid back and relaxed. Josh and I played a little Beatles Rock Band, which may be the greatest game ever made. Johnny took the opportunity to take a nap, which was probably good, but left him confused when he woke and we were ready to leave. He didn't understand, because to him we just got there.
After that, it was back to my dad's for Christmas dinner. We had the traditional turkey, potatoes and such. We stayed and visitid for a bit, and then it was off to Erica's parents, where we spent a couple of hours visiting there. Johnny was excited because he got another dinosaur movie there, which always makes him happy.
Then it was time to come home, and just crash. Johnny went straight to playing with his batcave, and has not stopped. Eliza is asleep, and I think their parents wish they were too. It was a busy day, but it was a great day.
To those of you who read this, I wish you all a Merry Christmas, and may the Lord bless you with all you need this season and the upcoming year.

The Fight for an Education

It might be a little early to worry, but I am concerned about the education my kids will be getting here in Utah. Utah Schools for the Deaf and Blind fully supports an oral educational approach for our deaf kids. In their opinion, oral education is the answer. Deaf kids who are educated orally will be better able to learn and function in society. They will be able to compete on the same level as kids who hear. They will be eventually mainstreamed and be normal happy teenage kids. That is what they want you to believe.
Last night we went to a meeting where we learned that the truth is not just different, but it is scary. A high percentage of kids who "graduate" from the oral and mainstreaming program read on a 4th grade level. A low percentage of them graduate, and an even lower percentage go on to college. Deaf kids who do go through mainstreaming aren't accepted. It's just the opposite. Instead of finding themselves accepted in the normal system, they are isolated as the only deaf child in the school. They are kept from participating in normal activities like sports or spelling bees. They are encouraged to take classes that will help them "graduate", but are not academic enough to help them get into college. An email was shown last night that showed how the administration of USDB in 2005 felt about their deaf students being encouraged to go to college. Basically, that kind of activity was referred to as giving the students "more false hopes". The person who was going to encourage these kids to enroll and apply at the U of U was told to give the deaf students "a good dose of reality, and not sugar coat it." If the statistics and attitudes that were shared last night were happening in a "normal" school district, it would make the news, parents would be up in arms. Yet here it is happening, and no one seems to notice. Why? Because what better can we really expect for the deaf kids? They don't really expect to go on to college, do they?
I expect my kids to go. I am ready to do everything I can to make that happen. My first thought was to move away, someplace like Texas, or Washington, D.C., where there is a strong Deaf community. Where my kids could go to school and get the education they deserve. But if everyone who felt that way moved away from here, who would stay and fight? No one. The USDB would win, and oralism would be the only way here. We decided we will stay and take up the fight. To make our kids' lives better, and make the lives of others better.
So, what is a better way? It's not hard to figure out, I think. The same way that hearing kids are taught, should be the same way that deaf kids are taught. Hearing kids go to school and communicate with their friends and their teachers in their native language. Most of the time, there is no interpreter, because the communication is direct. Deaf kids deserve the same. An all signing atmosphere for school. The communication would be direct. They wouldn't have to struggle to try to listen and read lips. They wouldn't miss vital parts of lessons because the interpretation was unclear. It would be direct. They would be surrounded by positive role models who are like them, who can set good examples for them. They would be surrounded by friends who are like them, and they would all be signing. It would be like any other school. They wouldn't feel ashamed or discouraged because of how they are different. They would be accepted. This would be good for building support for the future, building a community, based on common, positive experiences. I believe their test scores would go up, they would be better able to read and better prepared to go into college. They would be surrounded by adults, who believed and expected them to succeed, instead of knowing they would fail. Imagine the power we would be giving our kids, as they learned to love who they are, and have pride in who they are, instead of always focusing on what they are not.
If we don't speak out, then who will? The USDB will continue on like it has been doing for years. But if we come together and say that what they have been doing is not good enough, and our kids deserve better, if we demand that, how will they be able to deny it? We have that opportunity next week. On Thursday, November 12, at 6:30 at the Sanderson center, there is a Town Hall meeting with the new Superintendent of USDB. We need to be there to make our voices heard, to demand that they do what is right for our kids, which is educate them and prepare them for college.

No We Didn't Forget the Time Change

I imagine if anyone in our court saw us leaving before ten on Sunday, they probably thought, "How embarassing, the Dietz family forgot to set their clocks back." Truth is, we didn't forget at all. We were leaving just when we intended to. This last week we went to the LDS Deaf ward near our house. We were hoping it would be a good experience for Johnny to be around a lot of other people who sign, so he wouldn't feel like he was so different from everyone else.

It was amazing to see the difference it made for Johnny. He just sat and watched all the signing around him. He was just glued to the front. I mean, he didn't pay attention the whole time, but he didn't try to escape, he didn't scream, he didn't hit Eliza, it was amazing. He was still a two year old, but he was as reverent as any two year old I had ever seen.

After sacrament meeting the Bishop came over and said hi. I had met him a couple of days before at work, and told him we would be coming to the ward. He wanted to meet my two kids. The whole ward was so kind and welcoming. Even though my wife and I are still learning ASL, everyone mad an effort to make us feel welcome. It was great. Johnny seemed to do well in Nursery, and Erica and I were able to sit through all three meetings in church. It was pretty cool. We are not sure where to go from here. Going to the ward would be a good opportunity for us to be immersed more in the culture, which will help us as Johnny and Eliza grow. Plus they will have the opportunity to grow up in a ward setting where they are normal, which would be a huge deal for any kid. However, it would be a big change for us. However, well, I guess we'll see what the Lord wants for us.

Finding a Place for Johnny

We have been starting the long Pre-School Journey. The Journey to find the right pre-school for Johnny. It has been long and hard. A few weeks ago we visited the oral and total communication classes. We didn't feel like Johnny was very comfortable there. The first class we went to, the teacher kept talking to Johnny and asking him if he wanted to color a fish. Then she kept wanting him to say "fish" and Johnny just stared at her. It was like that in most of the classes. Johnny just didn't get engaged in the classes, he didn't know what was going on. There is a lot of pressure when your child has a cochlear implant to abandon all signing, and only do oral communication. Johnny is not ready for that. I don't know if he ever will be. When we done with our visits at the oral and TC classes, we were more nervous than ever about what it was going to be like when Johnny started pre-school.

Today, we went to the signing pre-school, called JMS. We walked into the classroom, and something really cool happened. The teacher was signing a story and invited Johnny to come over and sit on the floor with the rest of the class. Johnny went right over and sat on the floor. As the teacher signed the story, Johnny looked back at us with a surprised smile on his face. He thought it was pretty cool. After the story, Johnny joined the class at the tables where they colored a tree and stamped on some apples. Johnny really enjoyed it a lot. He thought the stamps were cool. After that they had a couple of apple peeler/core removers. The teacher demonstrated how it worked, then helped each of the students do it. It was all visual, all hands on. Johnny was engaged almost the whole time. We were in the class for an hour, which was way longer than Johnny wanted to stay in the other classes. In fact, when we needed to go, Johnny wanted to stay and play. We told him it was time to go, and he just signed "no!" and tried to ignore us. Then one of the teachers thought maybe he would want to go if he thought we were going to leave him there, so she told him we were leaving. He just waved bye to us, and went back to playing. That was a great sign that he felt comfortable there.

Through this whole process we have learned that the most important thing to consider in all of this choosing, is the child, and their needs. Johnny needs the signing, visual atmosphere right now. That's where we feel he needs to be. I don't know if the state will agree, but we are going to fight for it. When it comes to what's best for my kids, I won't back down.

Why I don't like Alexander Graham Bell

I understand that Alexander Graham Bell might be very familiar historical figure. I understand that the invention of the tlephone is one of the greratest inventions of all time. On the surface, Bell might be a hero. However, I have some issues with the man, and what he believed, and how those beliefs affect people, namely my kids, today.
First of all, Bell believed in the theory of Eugenics. I have a real problem with that. For people who do not know, Eugenics was a progressive movement in the early 1900's, which followed Darwin's theory of survival of the fittest to its logical conclusion in society. Progressives wanted to make society a better place, and felt that the government was the way to do that. One way to make society better was to eliminate certain aspects of society, like disease, retardation, blindness, deafness, or anything that could be considered a disability. Bell was a supporter of this idea. Many eugenisists, including Bell, felt that one way to eradicate these portions of society was to prevent them from reproducing. Bell strongly felt that this should apply to deaf people. If both members of a couple were deaf from birth, then they should not marry or reproduce because this would lead to more deaf babies. Laws, like this were passed in many states during that time to prevent certain populations from marrying. Some people were even encouraged to voluntarily become sterile. Eugenics had many supporters during this time, and was quite prominent in the United States. Only after Hitler and the National Socialist Party of Germany adopted the theory of Eugenics to justify the murder of millions of people, did it become unpopular in the United States. This idea of Eugenics is what led Bell into his life's passion and work.
That work was the oral education of deaf children. Along with being a eugenicist, Bell was also a Nationalist. Nationalism at this time meant a great fear for outside groups and cultures. Bell felt that the Deaf community fell under this umbrella, since they had their own language and culture. He felt that it would be important for them to abandon their language and culture, which seperated them from society. He came up with techniques and ways for deaf people to learn how to speak, and therefore become part of mainstream society. This new idea became very popular, and soon many deaf schools, that had previously taught ASL, switched to this new method. It was taught to students in very ruthless ways, where they were harshly punished for using their hands in communication at all. The goal was to eventually eliminate ASL all together, and only have oral deaf people in this country, until the actual goal was realized where deaf people were eliminated all together, and society would be wonderful and hearing.
Fortunately, students at these schools secretly taught each other ASL and deaf culture survived and was strengthened.
So what is the problem with oral communication for deaf people? For me, part of the problem is that it teaches deaf kids that there is something wrong with them, that needs to be fixed. On their own, they will never be happy or successful, or part of society, or any of that. When a child who is deaf is raised to be only oral, then he is constantly at odds with himself, about who he is and what his value is. His self worth takes a huge blow. Another part of the problem is that it is a hard way for deaf kids to communicate. Yes, there are cochlear implants and hearing aids, but it still takes a lot of effort. Communication is hard enough, without added complications. ASL is a beautiful language that enables deaf people to communicate freely and openly, or anyone who learns the language.
Now, my son is deaf. He has a cochlear implant, which means people automatically assume that we want an oral only lifestyle for our son. This is not correct. We see the implant as a tool for him to use to help him along the way. The harsh reality is that no one in our family is deaf besides our kids, so no one signs except for us, and one aunt. This is ok. It's the reality of the situation. We want to give Johnny the tools for communication in all aspects of his life, which includes his family. However, we will not force him to give up sign, or even encourage it. I have seen my son come alive through sign language. It is his first language, and I will not take it away from him. I do not believe that encouraging him to sign or to participate in the deaf community is going to hinder him. On the contrary, it will give him strength. I do not look at other kids who have cochlear implants who talk and listen only in the auditory world, and say to myself, "Finally I see that my son can have a happy, productive life." No! I see that as only one aspect of my child's life. I always believed that he would have a happy productive life, with or without hearing. I hope as he gets older, he is proud of who he is, and accepts himself, and does not view himself at all with shame. His success is not attached to the implant in his head. I want him to think, I am happy and productive, not despite being deaf, but because I am Deaf.
I hope the deaf community will accept him, despite his implant. We did not do it because we are ashamed of our son or because we did not think he could succeed without it. We did it to give him another tool to help him communicsate with others. The hearing world will not ever bridge that gap, so my son had to sacrifice to bridge it. Maybe this is wrong, but it's what I think.

Monthly Update

School has started for me, and that is why there has been such a long break in between blog posts. I wanted to take a few minutes to update everyone on everything that is going on in our lives, because life does not stand still!

Johnny is making great strides with both the implant as well as signing. He has started to imitate more sounds that he hears, including fire engines and the word "bye". He has also started to turn when we call his name, which is pretty cool.

Even cooler has been the increase in proficiency we have seen in his signing. He is starting to link bunches of words together to make sentences. Sometimes he will sign things so fast, I am not sure what he is signing. His favorite sign is Firefighter, since that is his current obsession. Today, we went to Erica's parents' house for a western night. They had a fire going, and as everyone was kind of leaving, and the fire was dying, Johnny waved his hand to get my attention and then signed fire, Firefighter, then water, and made the action of spraying water on the fire. Apparently, he wanted the fire department to come and put out the fire. It is amazing to me that he can put that all together. He has also begun to master the art of talking back in his signing, like when we tell him it is time for bed, or time to change his diaper. He is very good at signing no and shaking his head, then he looks anywhere, except at us. I would get angry, if it weren't so cute!

Johnny has also been enjoying the football season. I got him a little football outfit, that he wore for five days straight. I also took him to the first Utah home game, and he loved it. Now, every once in a while, you will find him getting down in his stance, and then jump up and run, sometimes he just runs, and sometimes he will run at me to tackle me. It is awesome. I think he is going to be a linebacker someday. Who knows?

Eliza is beginning to make more sounds as well. She just turned one on September 8, and it has been incredible to see how much of a little personality she has been developing. She smiles and laughs all the time. Her favorite game is to find a piece of clothing and drape it over her head and then walk around with it on up there. It's just about the cutest thing I have ever seen. She has begun to mimic more of the gestures she sees. Tonight at dinner, I signed eat to her, and so she moved her hand up to her mouth, copying me. Her favorite sign is what. She walks around all day doing that sign, nonstop. I think she must see us do it all the time, either that, or she really just wants to know what everything is.

Erica is doing well. We are getting more and more excited about our next little one on the way. At first it was a shock, but now we are just excited. Boy or girl, this little baby is coming to a great family, with awesome older sibling to show him or her the ropes.

The Cabin and Eliza's New Tricks and Other Big News

This last weekend was a lot of fun. We went up to a cabin in Huntsville, UT. Johnny loved it there. He saw horses and water and fire and ate s'mores and hot dogs and chips, it was a dream trip for him.

We got there on Friday afternoon and moved our stuff into one of the bedrooms then we went for a little walk to the barn that they had on the property. On the way there was a little stream that went through the property, and Johnny had fun just throwing rocks into it. He didn't want to leave it. Then we took him across the street so he could see some horses, which he liked as long as we kept our distance from them.

That night, we built a fire in the backyard and had an old fashioned wienie roast. It was delicious. Then we roasted marshmallows and had s'mores. Johnny liked that as well. The next day, it was kind of rainy in the morning, which disappointed us because we had planned to go canoeing that afternoon. In the morning we went over to David O. McKay's childhood home. We signed to Johnny that it was a prophet's house, and he thought that was really cool. He has been obsessed with prophets lately, so it was really neat.

After lunch on Saturday, it cleared up quite a bit, and we were able to go canoeing. We drove down to a little reservoir and took the canoe and kayak down to the water

and everyone took turns going out in the water. Johnny loved being on the canoe with us. He thought it was great because he was on a boat on the water. He was mad when we had to leave.

We left the next day after church, and after we almost caught the cabin on fire when we cooked some pizza. All in all it was a great little getaway.

Now for Eliza's new tricks. She has been spending more and more time on two feet instead of on all fours. She has even started taking steps. Today, while I was at work, she walked across the living room. It is amazing to watch her. She'll be sitting on the floor, then she'll get herself up and start walking, just like that. Pretty soon she is going to be chasing Johnny

down the hall. It is funny to watch her, she always gets so proud of herself when she walks, and looks around, and waits for us to clap for her, and then she claps for herself. It's fun.

The last part is our big news. We are excited to announce that our little family of four will soon be a family of five. It is a little sooner than expected, but we are excited nonetheless about the addition of another baby to our family.

Wonder Woman

When I was younger, there was only one thing I really wanted to be: Superman. Unfortunately, I can't fly, I don't have super strength, and I've never tried, but I'm pretty sure I'm not bulletproof. Not to mention my physique, which is not exactly super. Maybe I didn't grow up to be Superman, but I got close, because I married Wonder Woman. For those of you who read this and know Erica, you know what I'm talking about, or you at least have an idea. For those of you who don't know Erica, you're missing out.

Why is Erica so awesome? Where do I start? The world has it's own ideas about what makes a "wonder woman". This is a picture of perfection- the ultimate career woman who is also the ultimate soccer mom, who also keeps a perfect house, whose kids are just perfect, and through all of this her make up stays perfect and not a hair is out of place. This is not reality. The sad thing is that the world is missing out because the reality is so much better.

Erica does not have a career. She gave that up, by choice for her kids. Our house may not always be perfect, and neither are our kids. My wife doesn't have to worry about her make up smearing, because she is more beautiful without it, than she ever could be with, and fortunately for her, her hair looks great no matter what. So apparently. she does not fir the world's perception of perfection.

Let me tell what she does do. Last year, our world changed forever. In some ways we were planning on this, since we were expecting another child, which always changes things. What we were not planning on was being catapulted into a whole new cultural world. Our world was broadened and changed when we found out that Eliza was moderately deaf, and then a couple of months later, we found out Johnny was profoundly deaf. Erica, up to this point had no experience with deaf kids. She did not know a lick of sign language. She knew nothing about deaf culture, and had never imagined raising a deaf child, let alone two. This could have been enough for anyone to start questioning why things happen the way they do. As much as i would like to deny it, it was easy at first to see this as a trial and a challenge, a tragedy. Erica never did. She knew it would be hard, but she knew that raising kids would be hard. She seemed to realize from the beginning that this was not a tragedy, but a blessing. Through it, she has brought our family closer together, and has had nothing but love for our kids all the time. She has loved them unconditionally. How fortunate my kids are to have her as a mother, someone who will help them find strength in who they are, focus on being able, not disabled. She has grounded me in the knowledge that our kids are the most wonderful kids in the world. It has gotten to the point that we would be a little disappointed if our next kid was not deaf.

Besides all of this, Erica has been a wonderful mother. Our house may not be perfect, because Erica puts a priority on spending her time with the kids. She seeks out different activities to help the kids experience new and different things. She has shown me nothing but love, and has made my life worth living. She is always willing to pull me back down when need be and help me stay grounded, whether that is financially or whatever.

Erica is one of my heroes, and right now, I feel like she needs to now that, and I want others to know that. Sometimes, we get to caught up in what we are not doing right, and miss all the things that we do really well. I don't want this to be the case for Erica, because she does so many things, so well. I love her, and I look forward to our eternity together.

The Incident

I thought a lot about what to write for this post before I wrote it. Last night we had an "incident". Johnny has a hard time getting along with other kids. When he is left alone he is a sweet little boy, but often times when he is around other little kids he gets frustrated. We have seen that a lot. I think it comes from the inability to communicate. Johnny only knows sign at this point, and only on a basic level. The other little kids in our apartment complex only know english, and again on a very basic level. This leads to frustration, them with Johnny and vice versa. When Johnny gets frustrated, he usually hits the other children, to get their attention or to get them to stop, or to get them to go away. He doesn't know any other way to get his message across. We realize as parents that this is no good. We have tried to teach him not to do it, and in some ways he has gotten better the more he signs. However, there are times when he still gets so frustrated he can't help it. We try to be there to prevent those times from happening, but we are not perfect.

This brings us to the "incident". Last night Johnny was playing in a little police car outside. We were watching him, and he drove a little distance away from us. We were not too concerned because there weren't any other kids near him. We were sitting with some friends and were engaged in conversation with them. We kept looking back to keep an eye on Johnny. During one of the times that neither of us were watching, Johnny had been approached by a little girl in our ward. I don't know what happened, but the next thing we know, all the other little kids are running to this little girl's mom, many of them yelling that some little kid did it. We all looked to see what it was, and this little girl was bleeding from her nose. One of the other parents, who is not related to this little girl, came storming over to me, and said "Hey, your kid just grabbed some little girl's nose and made it bleed!" I got sick to my stomach. Then I got angry at this person, because his next words were taunting as he said "Yeah, see that girl over there, your kid did that, see what your kid did?!" I immediately ran over and took Johnny inside. As best I could, I tried to explain to him in my broken sign that hurting other kids was bad, and that he would have to go to bed now as a punishment. He cried for a while. I don't know how much he got from what I told him. Erica talked with the mom of the little girl. We felt, and still feel terrible about what happened. The mom was great. She was not angry with us, and explained to Erica that her little girl's nose bleeds pretty easily, and that it was not a big deal. Johnny's behavior still was not appropriate, and we are working so hard to get it right and to teach him.

I think that is what bothered me the most about what the other parent said. He has no idea what it's like. I don't blame him. How could he know that we had just had a long talk that day about things we needed to start doing to break Johnny of his hitting habit? How could he know that his comments were going to make my wife cry herself to sleep that night, and make me feel like a failure as a father? He probably thought that he was being some kind of hero, standing up for all the little kids on the playground and protecting them from the beastly Dietz child who never listens when the other parents ask him to stop. He probably didn't even know Johnny was deaf. I still wanted to ask him, though, to see how he would do raising two deaf children. Now it's hard to raise kids no matter what, but when one of his kids hits someone else, he can pull that child aside and talk to them about it. We try, but we just don't have the words. We're trying to learn them, but they're not there yet. We know that this kind of behavior is unacceptable, and we don't model it at home, but I honestly don't think Johnny is doing it to be mean. maybe I'm wrong. maybe my child is the monster this guy obviously thinks he is, and maybe we are awful parents who simply just don't care, like he must think we are. But I get so worried when Johnny does that stuff. I hate it when it happens, and I don't want him to do it, so I must care a little bit. And I've seen Johnny with his sister and other little babies and how he will softly try to hug them and give them kisses, how he signs words to teach Liza how to talk, and i know he is not a monster. I see how when he sees the other little boys playing with trains or super heroes, he gets his trains and super heroes. He just wants to be like the other kids, but he doesn't know how. We are trying to teach him, and I am sure he will eventually grow out of it, I just hope we can help him do it quickly.

Growing Up Some More

It's been a little while since I've written. I thought I should give an update on Johnny's progress as well as Eliza. This time I am going to start with Eliza. She is getting to be such a big girl. She has started to stand all the time, and has even begun to let go of things, and goin' freestyle. She has also begun to climb on things and over things and under things. She is getting to brave, I think, but maybe it is just hard to see her grow up so fast. I miss the days when she was a newborn and I got to hold her, and she was so little. Now she is so independent (she learned that from Johnny), she hardly ever wants to be held. She has begun using some more signs. Here is a list of the signs she has done to some extent or another: Mom, dad, more, milk, horse, airplane, and hat. She is also understanding more sign, which is just so cool. I swear she knows bedtime, because she gets mad every time we sign it to her. She also learned that from Johnny. She has also learned to make the ahhh noise when we practice with Johnny. Unfortunately for Erica, she has just entered a very mommy clingy stage. Erica loves it.

It seems like the longer Johnny has had the processor on, the more he signs. He is picking up signing like crazy, and not just words anymore, but whole sentences. It is so much fun to watch. He signs to us, to other people, to Eliza. The last one is really cute, because he will show her a picture of something and then sign it to her and sometimes he will help her to sign it. It is awesome. He has also started signing when he plays and sometimes he just signs to himself. It has really become a great language for him, and I think it will remain his first choice. He has also done really well with sounds. He has begun mimicking the sounds he hears us practice with him all the time. We talk to him all the time, but mainly he responds to our signing. He is so smart, just unbelievable what he can do.

What Johnny Heard

The title might be a little misleading. I don't really know what Johnny has heard this week. This is what I do know: Johnny heard something. We have seen some responses as he has been wearing his processor, but obviously there is still progress to be made and work to be done. Today, for the first time, we were making one of THE sounds, and Johnny began imitating it, so I know he heard that. It will be a long road to him speaking and listening.

It has been interesting to hear and see people's responses. Going into a store the other day, I noticed a man staring at it. Not just a curious look, or double take, but staring, with a look of bewilderment on his face. I thought, "what, you've never seen a kid with a cochlear implant before?" Then I thought, I really hadn't before we found out about Johnny and Eliza, so he probably hadn't either.

Most people that we have talked to have asked if it has just been amazing to see him respond to all the sounds. Our family is excluded here, because we prepared them for the reality. People think it is like wearing glasses. You put them on, and you can see. It is completely different with the cochlear implant. Johnny has to learn how to hear and listen now, and it will take a lot of hard work. So the answer is, it hasn't been much different yet. It will be amazing over time, but not just yet.

The one thing that has come out of it has been the opportunity to explain to people our thoughts on the whole kids being deaf thing. A lot of people assumed, in the hearing world, that we were doing this to fix our kids, so they wouldn't have a tragic life where they missed out on all the wonderful sounds around them. It has been a great opportunity to explain that our kids being deaf was never a tragedy. It may have been a comedy at times, or a drama, but never a tragedy.. Tragedies always have unhappy endings, and that wasn't ever going to our kids' lives. Johnny is 2 and a half years old. He is healthy and happy. He talks a lot (using his hands), he loves Batman and all things super hero, he loves trains and cars and frogs and bugs and dogs. He loves his little sister, sometimes too much. He knows who Jesus is, and he loves Him. He loves mom and dad, his grandmas and grandpas. Where's the tragedy? He is just like any other kid. We did not get him the implant to fix him, to make him just like everyone else. We didn't get him one because we felt like he was missing out on life. He wasn't. He is an incredible little boy, who can do so much, with or without the implant. We got the implant, not for him, but for others. To help others get over the communication barrier with him. My wife and I are learning sign, and teaching it to him, and he is amazing at it. That will always be his language of choice, I think. He will never have to work at signing as hard as he will at listening and talking. The reality is that the rest of the world will not cater to him. The implant is just a tool for him to communicate with others, make his life a little easier. It is not what is going to make his life complete, because it wasn't missing anything.

Activation Day

Today was the big day, Johnny's activation.  I had been having mixed feelings about it all.  I wasn't sure that all of this was really necessary, did Johnny really need this implant?  Then I had thoughts about whether this was really going to work.  When we first found out about Eliza's hearing loss, and realized that Johnny probably had it too, we thought his would be the same as hears, in the mild to moderate range.  It was hard when we found out it was severe to profound.  Then we got our hope up that hearing aids would work, but they didn't, at all.  So, I was afraid to get my hopes up this time.

When the audiologist hooked up the processor, and after the boring testing of the electrodes, and we saw Johnny react to sounds for the first time, it was a magical moment.  I couldn't believe it.  It was working, no letdown.  Then it was time to leave to office.  We had the map set on his processor, and the battery pack was hooked up, so we turned it on and then put it on his head.  The magic was over.  He began to cry a lot.  He just wouldn't be comforted.  No one had really prepared us for that reaction.  I felt like the worst parent, like I had taken something away from him, when I thought I was giving him something.  I promised myself that I would not let him lose that part of himself that was attached to his deafness.  We'll keep working on that.  

The rest of the day went better.  He kept the processor on for most of the day.  We went first to my mom's house, where his grandma showed him the wind chimes outside, and he discovered that they were more than just decorations, they made sounds, and he was amazed.  After that, we rode the train downtown and went to the LDS Church museum to explore the Primary display upstairs.  Johnny loved it, there was a lot for him to see and do.  He had a lot 

of fun there.  After that, we went across the street to Temple square to go see the Christus statue.  Johnny has really been into pictures of Jesus lately, so we thought he would enjoy that, and he did.

After that we went downstairs to see the display on the Book of Mormon and modern Prophets.  Erica needed to nurse Eliza, so she took her into the bathroom and fed her.  Johnny and I went over to the display featuring President Monson.  It had clips from different talks on different topics.  I found one on Jesus Christ and pushed play.  Then I sat on the floor next to the stroller and watched as Johnny signed  "prophet" and pointed to the video image.  Then he stopped as President Monson started speaking.  Johnny turned his head a little and just watched, and listened as the prophet spoke.  For the first time of the day, I got a little emotional as I watched my son listen to the Prophet for the first time.

After we were done downtown we took the train back to Murray, and then went to my dad's house.  Everyone was excited to see Johnny, but he did not like hearing everyone.  We had a harder time getting him to keep it on there.

When we got home, I got Johnny ready for bed and got my favorite book from when I was a kid, "But No Elephants", and read to Johnny with the implant in.  I signed most of it still to him, but I sat with my mouth close to his mic and spoke the story to him in different voices, and he smiled a lot and really enjoyed it.  That was the moment when I promised myself that I would work with Johnny to develop his listening and oral skills.  I want my son to enjoy all of life that he can, and today was a big step toward that.

 

3 Down, 1 to go

Well, we have less than a week until Johnny's activation.  We are excited and nervous.  I don't know how Johnny will react, so it will be interesting to see.  I think it might bug him for a while because he is one who doesn't always like change.  At the same time, he always adapts very well and quickly.  

In my ASL class we watched a movie about two families, one that was Deaf, with deaf children, and one that was hearing with a deaf child.  We watched as the two interacted with each other, and in not the most friendly ways.  As I was watching it, I wondered what it would have been like to be one of the other students watching the film.  For them it was just an interesting movie in class.  For me it was real life.  My wife and I had gone through all of this, and had to make this decision, and had to wonder if it was the right decision.  I think about it all the time.  How is Johnny going to feel about his implant when he gets older?  Will he appreciate what we were trying to do in giving him as much opportunity as we could?  Or will he resent us for forcing an implant on him?  The family in the movie who got the implant, the dad said he stood behind his decision 1000 per cent, and called his brother (the dad in the other family) criminal for not doing it to his children.  I guess at this point, all I can say is that I hope we made the right decision.  I hope Johnny will find a way to live and thrive in both worlds.  I hope he will find a way to function in the hearing world, without losing his deaf identity.  I hope he comes to appreciate the culture he was born into, one that his mom and I knew nothing about.  I hope it all just works out for the best.  I just hope, no matter what, he grows up to realize his full potential, that he grows up to be a leader and an example to those around him.  That has nothing to do with him being deaf or hearing.  It just had to do with him being my son.

Liza's Signs

We've noticed that Liza is really beginning to sign more and more.  My favorite is when she sees me in the morning or when I come home from work, she signs Daddy.  I love it.  We have also been working with her to sign milk.  Usually, she tries to just go for it when we tell her to sign it, but more frequently she signs it now.

Earlier today we went to the library, and Eliza was just watching Johnny and us sign, and was trying to sign everything she saw.  Johnny  saw an alligator on a table and signed it to me.  Eliza saw that and laughed as she signed it over and over again.  I don't think she knows what all of those signs mean, but she knows that in our family, that is a way that we communicate.

She is growing so fast.  She went to the doctor's  today, and she is growing.  The doctor said that one of the things we should be seeing her do in the next couple of weeks is crawling.  Erica just informed him that she has been doing that for weeks.  He said the next thing that she will probably be doing by the next appointment is pulling herself up on things.  Erica let him know that she already does that too.  Apparently, our child is gifted and advanced for her age.  How many other 9 month olds out there crawl, pull themselves up on things, and talk?  Ok, I'm sure there are plenty out there, but we like to think that our Liza is pretty special.

2 Down, 2 To Go

Well, we are at the midway point between Johnny's surgery, and his activation date.  It has been an interesting time for us.  We feel like we have really done a lot to help people become aware of cochlear implants and how they work.  Johnny's scar has drawn a lot of attention, which always leads to questions.  We are always glad to explain.

Johnny is picking up signs like a sponge.  He has started watching what we sign to him and copying it, including finger spelling.  Granted, he doesn't really finger spell, but he tries.  He knows so many words, it is hard for us to keep up with him.  This week, we have been working with him on the concept of "help".  He still doesn't ask for it when he needs it, only when we remind him to.

His favorite new sign is sad.  Whenever we see some one who is crying, he signs sad.  The other day, we were watching the Superman movie, and we got to the part where Lois Lane dies, just before Superman flies really fast, causing time to go backwards (if you haven't seen the movie, excuse my nerdiness).  Johnny saw Superman holding Lois Lane, crying, and he turned to me and signed sad.  It was really cute.  Turns out, Superman movies are a great way to teach the concept of help.  Every time someone was in trouble, I would sign to Johnny that they needed help, and then Superman came and helped them.  Pretty soon, Johnny was signing to me that the people needed help.  I think he was really beginning to understand.

I hope, as we get the implant activated, that Johnny will learn spoken words quickly, and will continue to learn signs, as quickly as he has been.  I think that no matter how well Johnny learns to talk, his first choice will always be signing, and we don't want to discourage that.  We want him to be comfortable expressing himself in his language of choice.  That's why we want to learn sign language, so he always has that choice.

Parents Decide

Recently, I've been hearing of things that are a little troubling as a parent.  There are those out there who are trying to change, things and not for the better.  I am wary of any person or group who tries to tell me that there is one size fits all approach to children who are deaf or hearing impaired.  I am also wary of anyone who tries to tell me that my children can be "fixed", like their broken.  My kids aren't broken, they are perfect just the way they are.  I want to give them tools to communicate and be successful, but I always want them to be proud of who they are.

I know there are groups out there who are working to take away our choices as parents to decide what is best for our kids.  Nowadays, there are so many choices for kids with hearing loss or who are deaf, that we should be able to study them out, and decide for ourselves, and professionals and PIP workers should support us in that.  I am grateful that this has been our experience thus far.  We have shared with our PIP advisor what we have decided, and she has supported us on that.  However there are groups who claim that PIP is too one sided.  In reality, I think they feel that PIP should not offer any other option but the one they have chosen, whether that be signing or oral or somewhere in between.  These same groups are working hard  to make sure that they bring about these changes.  Everyone I have ever talked to in PIP has said that it's the parents' choice how to raise their kids, and they are there as support.  That is how it should be.  If these groups who want to change things by writing letters and going before boards are successful, our right to choose will be taken away.  I hope parents will be aware of this and make it clear that all we want is options, and the support to accomplish the goals we set for our kids.  I hope the day will not ever come that my freedom to choose will be taken away.

Now, those who are supportive of these groups, I believe are really doing what they feel is best for themselves and others.  

I am also just trying to do what I feel is best for my kids and others.  I want there to be choice, I want to have the right to choose for my kids, and I want my neighbor to have the same choice.  If you choose oral communication only, or if you choose signing only, or a mixture of both, make it the right choice for you and your family.

Johnny Goes to University

Yesterday, I brought Johnny to my ASL class at the University.  It was the last day of actual class before the final, and our teacher wanted us to each to bring a show and tell item and describe it to the class using sign language.  I brought Johnny because I thought the other students would think he was cute, and I love showing off how smart he is.  What I didn't expect was how much Johnny enjoyed the class.  He thought it was so cool that everyone was talking the way he does, like he was normal.  

He spent the time before our turn going back and forth between two different chairs and playing with his little super hero toys.  He also would sign all the things that the others brought to class.  He was really interested in what was going on.

Then it was our turn to go.  He walked right up to the front of the class.  I signed for him to sit in a chair and he moved over by the table where he had his back pack and sat down and just looked around and smiled.  I wanted him to try and sign somethings to the class, but he was being shy and didn't want to.  When our turn was over, he moved the chair back to the corner at the front of the class, and then he went back to where we had been sitting and got the rest of his toys and signed that he was ready to go to the car.  It was really cute.  Everyone was really impressed with him and how smart he was.  I am just amazed with how smart he is.  I am so proud of him.

Earlier in the day we brought Johnny to the city library in Salt Lake City.  He loved it.  The children's part was in the basement.  They had different rooms to play in, and one was the crystal cave.  He had on his Superman cape that Erica had made for him, and had just watched Superman II in the morning.  We thought it was pretty cool, because the crystal cave room looked a lot like Superman's Fortress of Solitude, so we got a picture of our little Superman in his Fortress of Solitude.

1 Week Down, 3 to Go

It was just a little over a week ago that Johnny had his surgery done, and he is looking good.  He is running around and playing like he always did.  We are amazed at how good the scar looks on his head.  It is really healing up nicely, and now that the hair has started to grow to cover it, you almost have to really look to see it.

Yesterday he went with Erica to the dinosaur museum at Thanksgiving Point.  She wanted to take him because lately he has been really into dinosaurs, and she thought he would be excited about it.  She was right, I guess as they came around the corner and saw the first dinosaur he started jumping up and down and getting excited.  He enjoyed the outing very much.

His newest thing is being addicted to chocolate milk.  He was already addicted to regular milk, but last week we bought some premade chocolate milk, and he loved it.  Now he won't have his milk any other way.  He also loves hot chocolate, so when we were out of the chocolate milk, Erica would make him the hot chocolate, which he began signing when he wanted to drink by signing hot, then chocolate.  Last night we went to the store and got him some mix for chocolate milk, since that is easier than making hot chocolate all the time, and he likes it just fine.

I am amazed at my little boy.  To be his old happy self again, this soon after surgery amazes me.  He has bounced back so well.  He still remembers the surgery, I think, but he has moved on.  I know he doesn't know the impact it will have, but in just three weeks, he will, and hopefully he'll eventually understand why we put him through all of this.

Not so Little Liza

Eliza went in last Thursday for an evaluation at the audiologist.  Her hearing is about the same as it has been, which means that the hearing aids are still working for her.  We were beginning to get a little worried that her hearing loss had increased because she doesn't seem to making all the sounds she should at this age.  It's kind of a frustrating thing.  These professionals decide where your child should be based on averages and what not, when in reality, every child is different.  Maybe we just worry more because of the progressive hearing loss that both our kids have.

The last little while I have been amazed at the amount that Eliza has grown.  All of a sudden she has her own little personality, she is becoming more and more a little girl instead of a baby.    One way that this is apparent is in her first signs.  Recently she began signing a few things, and it is so cute.  She signs milk and reaches for mommy when she is hungry.  When I come home from work, she signs daddy by smacking the side of her head, it is so funny.  She will also sign more by clapping her hands together.  I am amazed at how she has quickly picked these up.  I don't think she totally knows what they mean, but it is still cute.

She is crawling all over the place and has begun pulling herself up on things to stand.  Just last week she started letting go of things and trying to free-stand.  This usually only lasts a couple of seconds, and then she falls.

My little Liza is not so little anymore, but fortunately for us, she is still pretty cute.

Deaf for a Day, Lesson for Life

I am currently taking ASL 1010 in school right now.  I figured that I needed the language credits for my degree, and this was the most useful language to take right now in my life.  Part of the course requirements is that we need to spend one whole day (at least eight hours) being deaf.  This meant no listening to music in the car, not listening to sound on the TV, no talking at all.  All of our communication had to be through the sign language that we had learned.  I decided to do this today, forgetting that we had a church activity in the afternoon. When I remembered that, my wife asked if I would want to do it on another day.  I thought about that, and then realized Johnny and Eliza do not get to pick which days are convenient for them.  They go to every church activity, family get together, party, whatever as deaf people.  This would be a good experience in trying to communicate with the hearing world while deaf.

It was hard.  I felt like I was not really part of the activity because I couldn't really communicate with anyone.  Erica served as an interpreter, but sometimes she did not know what I was trying to sign, and I did not know hoe to better communicate it.  I felt like people were kind of just avoiding me, not on purpose, but just because the whole situation was awkward.  These people are normally my friends, but they couldn't talk to me, so they didn't.  After a while, I just followed Johnny around, and didn't really participate.  I wondered if this was how Johnny felt everyday on the playground.

Then I learned a great lesson from him.  He spends all day watching the other kids play on the playground and tries to participate with them, and is greatly ignored by them.  But he goes out there everyday and tries again anyway.  I was reminded of that at the activity, and realized that in a cool way, he had made some friends.  There were two other boys at the activity that were a little older than Johnny.  One of them kept asking me where Johnny was when he could not find him.  Then they played in the drinking fountain, taking turns spraying each other with the water, and laughing the whole time.  Then, the three of them found a worm on the ground and laughed as they each tried to pick it, Johnny was the first successful one, and they all laughed.  I realized that despite Johnny's differences, he had managed to make friends, and they found a way to laugh and enjoy each other that did not depend on being hearing or deaf.  I realized that the limits we saw in Johnny making friends were limits that we put on him, not limits he saw himself. I think he knows that the kids sometimes treat him differently, but maybe on some level he understands why, and somehow he has the patience to wait until they figure out that he is worthwhile to be around.

The Choices We Make

When we found out about Eliza's hearing loss, and then Johnny's more severe hearing loss, we were unexpectedly launched into a world that we knew nothing about.  Immediately people began bombarding us with questions about what we were going to do.  Decisions were going to be made over the next little while that would affect our kids' lives forever.  It felt like a lot of pressure to make the right choice.

The pressure came from all sides.  From things we read online to professors in school to medical professionals.  Everyone seemed to have an opinion with points to back them up.  It became clear that we were in deep, and that ultimately, it was something we had to decide for us.

When Eliza failed her hearing screening and we learned that her hearing loss was permanent and progressive, we began to wonder about Johnny who was still not talking.  Questions were raised about his hearing, and the more we looked at him, the more it became clear that he could not hear.  It was at this point that Erica began to learn sign and teach it to Johnny.  He picked it up fast, and still learns signs very quickly.  

In December, when we took Johnny in for his ABR, we found out his deafness was in the severe to profound range, and that hearing aids would probably not work for him.  The audiologist who was performing the testing asked if we would want to do a cochlear implant.  We were just trying to accept the fact that our son had already lost pretty much all of his hearing, so we had no idea about cochlear implants.  The audiologist then said that if we were considering at all cochlear implantation, then we should stop signing with him, since this would just cause frustration down the road.

Others would tell us that it would be ok to sign a little bit with him, until he got the implant, at which point he would be "cured" and not need to sign.  We were continually frustrated by this supposed choice we had to make to do either or.  The more we thought about it, the more we thought that we did not want to choose between the two, but to choose both.  Our kids would be bilingual and bicultural.

The realities for us were these:  Johnny and probably Eliza would be more comfortable signing as their primary mode of communication, and The families they were part of and the kids they would live near and the world outside their home would be an auditory world.  We wanted to give Johnny and Eliza every opportunity to communicate that we could.  We also did not want our kids to ever feel that they needed to be fixed or cured.  We want them to be proud of who they are, and to never feel that there was anything wrong with them.  These are the things we considered in making the choice to put Johnny though surgery and to keep teaching him sign language and to learn it ourselves.  We understand that this may not be the right choice for everyone.  I guess the important thing is to remember that no one is going to know what is best for your kids better than you will, and to have confidence in the choices you do make.  The other thing we've learned is that the right choice, whatever it may be, is rarely the easy choice.  It is always hard, no matter what you choose. 

Update on Johnny

I just wanted to leave a little post on how Johnny's recovery is going.  Saturday was along day, and Johnny was definitely not himself.  He just laid there and took it easy.  Well, for most of the day.  At some point he decided he wanted to start getting up and doing stuff.  Johnny just isn't the type to just sit and do nothing.  He knows he is missing stuff if he is doing nothing.  The problem was he couldn't really walk yet.  He would try, but he looked like a little drunken man when he did.  He learned that quickly, and mostly just crawled, or would come to us to help him get somewhere.

Sunday he was more like the Johnny we know and love.  He was moving better, but this led to more problems, because he wanted to do more, but still was not completely stable, so he made us a nervous wreck.  At one point, he and I took a long nap.  When he woke up, and then woke me up, he pointed to his head, and then signed "what", asking me what was going on with his head.  That broke my heart a little, and I wished I was better with signing so I could explain it better to him.  We spent a little time outside on Sunday, which we thought would be a good idea.  It just made Johnny want to do more stuff he couldn't, like sliding. The one thing he wanted to do more than anything else was to go down the slide, and that was the one thing it specifically said he could not do on the papers from the doctor.  So he was mad.

Monday, he was climbing on stuff and running around and hitting on Eliza.  Johnny was back in full force.  He still looked a little wobbly when he walked, and we had to help him up and down steps.

Tuesday, he looked normal and we started letting him sleep in his own bed, which was good for us.  He did make Erica nervous when he climbed up onto the back of the couch and tried to stand up on it.  That would have made her nervous even if he hadn't just had surgery on Friday.

Today, he has made it through most of the day without any pain medicine, and has been running around nonstop.  It is amazing how resilient kids are.  His scar is starting to look pretty good, which I think is a good sign that everything is healing nicely.

It has been an amazing process, and I look forward to what is yet to come.  Johnny is just so smart, and I thing he will figure out talking pretty quick, with work.  However, I also think he will always probably prefer signing, which is cool too.  That is his first language, and the most natural for him.  We don't want him to not be deaf, because that is part of who he is.  We also don't want him to not be part of family gatherings and get togethers.  We want him to have the best of both worlds, to be bilingual and bicultural.  It's not the easiest way, but we feel, for us and our family it is the right choice.

Johnny the Brave

On Thursday, we went in to see Dr. Shelton for Johnny's pre-op appointment.  He went over how the whole procedure was going to go.  Johnny had fun while we were waiting for the doctor to come.  He would sit on the doctor's chair and would sign for me to sit in the patient chair and then proceed to examine my hand.  He seemed to think it looked ok because he would then motion for me to leave.  Then I would sit again and the whole thing would be repeated again.  Then he wanted to have Eliza sit by him, and he would examine her.

When the doctor came in he 

explained how things would proceed the following day.  We became nervous when he told us that we would not be in the room when Johnny went under.  Instead he would be taken back to the OR doors, and then Johnny would go through the doors and we would go back to the waiting room, until it was done.  We were worried about how he would do with that.  Then the doctor went ahead and marked Johnny's right ear for the procedure. 

The next day we got up bright and early and were at the hospital at 7:15 to check in.  We waited in the first waiting room until they called us back.  Johnny was sad when we went back because he was having so much fun playing with all the toys.  When we went back they took his weight and height then we went in a room and changed him into his hospital pajamas.  This was probably the point when Johnny started to realize that this was not a normal doctor's appointment.  After a few minutes in that room, we went to a second waiting room with more toys, where we would wait to be taken back to the OR. Johnny was really enjoying himself with all the toys there and they had curious George on, so it was fun.  Then the anesthesiologist came in and wal

ked us back to the OR.  Johnny rode in the wagon with his Batman pillow.  Then we got to the doors and left Johnny with the doctors and went back to the waiting room.

Erica was the first to coback when Johnny was waking up.  She said that his face was really swollen, and when she got back there he was rolled up in a ball in his bed crying.  I was glad it was her and not me.  It was hard when I saw him.  He had the dressing wrapped around his head covering his wound and he was out of it.  It was really hard to see him like that, and to know it was my choice to have him here and to get this procedure done.  I knew before that the cochlear implant would op

en doors for Johnny and enable him to have as many communication tools as possible in his life.  I knew that, but it was hard to think about it as a good thin when he was laying in my arms.  He never looked mad or sad, just tired. 

We brought him home later that day, and it was hard to watch him all day.  He was not himself.  He just laid on the couch and slept.  When he was awake he would just lay there and watch TV.  For those of you who know Johnny, you know how out of character that is for him.  Later I was up with him and he signed football to me.  I gave him a football, and he threw it and began to laugh a little , and it was the first time I saw a glimpse of my Johnny that day.  Over the next couple of days, we saw more and more of him come out.  Now he is back being himself, except he still can't quite walk straight, so we try to limit his mobility, and he is just bored to tears and wants to get out of the house.  

Watching him go through all of this, I realized that my son is a super hero.  He is so tough.  He has cried and whined so little through all of this.  I know this will be a good thing for him, but it does not make me excited for the next one we'll have to go through with Eliza.

Erica

Today is Mother's Day, so I thought that his would be a perfect time to write about my beautiful bride, and Johnny and Eliza's wonderful mother.  I met Erica in September 2005, fresh off her mission to Uruguay.  She was shy and quiet, but I knew she was something special.  On our second date, I knew we were going to get married.  I didn't share that with her, because I didn't want to scare her off, but I was certain.  We dated for about a month and a half, then got engaged to be married.  Shortly after that, in April of 2006, we got married.  

As I got to know Erica, I fell more and more in love with her.  One thing that I loved about her was how smart she was.  She was way smarter than I was, and still is.  We could have great conversations about anything in the world.  She was so talented.  Erica can really do anything she puts her mind into.  The other thing I really loved about her was that she wanted to be a mother, right away. She did not want a career or anything, just to be a mother.  For me, that was what I was looking for, that was right for me.  That may not be right for everyone, but I was ready for a family right away.

We didn't waste any time.  We were married in April and were pregnant by May.  I always heard horror stories about how wives could be when they are pregnant.  I never experienced it though.  There was definitely a difference in her, but it was mostly positive.  She just glowed while she was pregnant.  I thought she had been beautiful before, but she was beyond beauty while she was pregnant.  

In January of 2007, Johnny was born.  Erica was so amazingly tough.  I couldn't believe it.  She went through it like a pro.  When she held Johnny in her arms, it became apparent that she was born to be a mother, and I could see how much she loved and cared for him right away.  She patiently learned the ins and outs of being a mother, and gave of herself like I had never seen before.

In September of 2008, we welcomed Eliza into our family, and I saw that same toughness and love in Erica again.  Her concern had been how Johnny would react to Eliza.  I was not worried because he had learned nothing but love and caring from his mother.  He loved Eliza from day one, just like he had learned from Erica.

Day in and day out I watch Erica with my kids.  I watch the innovative ways that she finds to teach them new concepts and ideas.  I watch how she patiently plays with them, colors with them, paints with them.  I watch how she lovingly cares for each of them, and teaches them to care for each other.  I know she feels frustrated sometimes because of the special circumstances we fins=d ourselves in.  I watch her and I know that the Lord has blessed Johnny and Eliza with the perfect mom.  I see this in the way that Johnny lovingly tries to teach Eliza the words he knows by pointing to pictures and objects and then signing them.  I see it in the way the two of my children play together.  I see it in the way that Johnny protects his little sister.  I see it in the way Johnny reverently signs words like temple and Jesus and church.  I see it in my kids' smiles and laughter.  They are happy kids, because they have a superb mother.

In addition to a great mother, I could not have asked for a better wife.  She has stood by me through ups and downs, through school and work.  There have been times when I feel like giving up, but I know she still believes in me, and I find it in myself  to believe in me.  The Lord has blessed me with the perfect wife.  I am everything I am today because of her, and her believing in me when nobody else did.

So, on this Mother's Day, I want to recognize my hero, my wife.  She is awesome, and I am so blessed to have her in my life.  I thank the Lord everyday for blessing me with the opportunity to spend this life and eternity with Erica.

Johnny Boy

Johnny was born in January of 2007, and changed our lives for the better.  A funny thing happens when you have a kid.  Up to this point, as a married couple your life is all about two people, yourselves.  Then you have a new baby, and life is about one person, the baby.  Johnny was a runt from the beginning, weighing in at 6 lbs and 11 oz.  

We loved watching Johnny grow and learn.  One day he was a baby, then he was up and running around and climbing all over stuff, and he is a little boy, with his own personality.  He was growing just like every other.  He started to develop his own personality, and it was awesome.

As he grew, he didn't start talking.  Our pediatrician wasn't concerned, because Erica was a late talker, so it could just run in the family.  My mom started to be concerned about things like autism, because she reads too many articles about it.  Our doctor assured us that Johnny had no symptoms of autism, he just didn't want to talk.

Then Eliza was born, and we found out about her hearing loss, and that it was genetic.  The doctor said he was pretty sure that Johnny was fine, but that we should check just to make sure.  He did a little screening thing in his office, and sure enough, it looked like there might be a problem.  

Erica took Johnny to Primary Children's in Taylorsville, and they did some testing in the sound booth.  The tests were inconclusive.  They couldn't tell if he wasn't responding because he couldn't hear, or if he wasn't responding because he didn't get it.  They wanted him to come back, but they also suggested that we set an appointment for a sedated ABR.  When the kids get to be older, like Johnny, they have to have them sedated so they are not moving during the tests.  This was in October.  The test could not be scheduled until December 23.  It was a little frustrating that we had to wait that long until we found out how bad Johnny's hearing loss might be.

I was convinced, again that nothing was wrong, that Johnny would be fine, and could hear fine.  Erica knew better.  She immediately started teaching Johnny sign language, and he began picking it up very quickly.  It was like he had been wanting to communicate, but he did not know how.  His whole world was opening up.

December came quicker than we thought, and soon it was the 23rd, and time to get him tested.  We had to sleep deprive him, meaning we had to keep him up late and get him up early.  We also weren't allowed to feed him anything, so he was in a great mood as we got to the hospital.  He actually did really well.  He was very curious about the hospital room and what was going on, particularly when they were hooking up all the sensors.  He thought it was pretty cool.  He just watched as the nurse got everything ready.  Then they brought in the medicine to help him fall asleep.  Soon he was out and they brought in the ABR machine and hooked it to the electrodes on his head, then they performed the test, and we waited, and waited.  We figured something must be up when the audiologist had her supervisor come in for a second opinion.  She tried to reassure us, but we knew better.  At this point, this wasn't our first rodeo.  But, we still didn't get any information, so we waited some more.  Finally she was done, and let us know, Johnny was almost completely deaf.  It was beyond the point that hearing aids would really work, and our option was a cochlear implant, after a six month trial with hearing aids.  We had prepared ourselves for this outcome, but it didn't make it any easier.  We tried to smile about it, but it was tough.

After he woke up, he was really out of it.  He just kept falling asleep, and didn't want to do much all day.  While we were still at the hospital, Johnny was waking up, and he wanted to play, but he was so tired, he had a hard time holding his head up.  He would try to walk, but always ended up crawling, dragging his head on the floor.  It was sad, but we couldn't help but laugh at him.  It was pretty funny.

Since that time, Johnny has continued to grow and learn.  He currently wears hearing aids, but they do almost nothing for him.  We know that an implant will help him to hear, but we have to wait until our insurance to say we can have the implant done.  The time is usually 6 months.  We are pushing, and hoping that it will be lessened for Johnny.  He already has to catch up two years, and the longer we wait, the longer he goes with auditory stimulus.  The brain is an amazing thing, and he will be able to compensate down the road, but it is still frustrating.

He is also learning a ton of sign language, and it is fun to watch him learn and use it.  The hard thing is that neither Erica nor I sign at all.  Everything we know now, we learned from teaching Johnny, so we feel like we can't learn it fast enough to teach it to him.  Erica is amazing, and does an incredible job teaching him all sorts of signs, but we were not prepared for this.

Johnny is a normal kid, though  He loves Disney Cars, and Curious George, and Batman, and Mickey Mouse.  He loves sports and playing outside.  He loves his little sister, and is her little protector.  It is fun to watch him take her along on his little journey through life. He is constantly showing her things, and trying to explain things to her.  He is our little man, and I couldn't be prouder of him. 

Eliza Ann

Our oldest is Johnny, but our story begins with Eliza, or at least this part of our story does.  Eliza was born in September of 2008.  She was a beautiful, healthy little girl.  We were so excited.  I remember looking at her for the first time and just falling in love.  She was my little girl from the very beginning.

The pregnancy had gone really well.  There had been no complications whatsoever.  It went better, in fact, than Johnny's did.  The birth also went off without any problems.  Like Johnny's it was quick once it started.  Erica went into the hospital early in the morning, and by mid-morning we had Eliza.  

Erica was tired, but relieved and happy.  I love seeing her right after she has had a baby, she just glows.  

While we were at the hospital, they kept coming in and checking on the baby and the mommy, as they always do.  They would occasionally take Eliza for weighing and temperature and other various tests.  One test that they do at every hospital is called an OAE.  This is a hearing screening.  They do it, probably without the parents even knowing.  We didn't know that it was done with Johnny.  We did know about it with Eliza, because she failed it.

I remember when the nurse came in and told us that Eliza had not passed the test.  She assured us that this was fairly common.  Sometimes fluid in the ear, or debris from the birthing process, can cause a baby to fail the test.  This often clears up in a week or two, then many babies pass the test without any problems.  She gave us some fliers on it, and encouraged us to set up an appointment to come back and have Eliza tested again.

I think it was at this point that Erica knew something was up, more serious than debris or fluid.  A mother always seems to know these kinds of things.  I was still just so happy from having a beautiful little girl, that I think I was convinced that we would get her tested and everything would be fine.  My little girl was perfect.

A couple of weeks later, we found ourselves back in the hospital getting the OAE done again.  My wife went in with Eliza, while I sat out with Johnny, and waited.  And waited.  I was sure that everything would be fine.  I was positive that she would pass this time.  Why would we have a child with hearing loss.  Johnny could hear just fine, why would things be different with Eliza?  

Erica came out with Eliza.  She failed again.  The audiologist gave us a referral for an ENT to get her ears checked out, to make sure there was no fluid in them or anything like that.  We went, and there was no fluid there, everything was fine in that department.  That meant it was time to go back to the hospital, for the OAE again.  She failed.  This time I was in the room.  We left Johnny with one of our parents.  After the OAE, the audiologist performed a test called an ABR, which was going to tell us how severe the hearing loss was.  He performed the test, as best he could.  The results were not as conclusive as he would like, since she woke up part way through, and we couldn't get accurate results.  At this point, the audiologist thought that her hearing was not very bad, that she would be fine without hearing aids.  He did want us to come back again, though, just to get better results.

We went back there again, and the machine wasn't working properly, and the results again were not very conclusive.  It can be a frustrating thing, when as a parent, all you want is to find out what is going on with your child, and no one seems able to give you any answers.

We went then to an audiologist at Primary Children's out in Taylorsville.  The machine worked fine, and we got results.  The hearing loss was in the mild to moderate range.  It was permanent.  She would need hearing aids in order to develop speech.  Erica and I had been preparing for this since the first tests, so I think we took it well.  We were determined to do whatever it takes to help our little girl.

As a result of this, we met again with the ENT.  He gave us an official diagnosis, and a prescription for hearing aids.  He then sent us over to get a MRI to see the internal workings, to see what may be causing the hearing loss.  We found out that she has an enlarged vestibular aqueduct.  This meant that the hearing loss was not only permanent, but progressive.  She would most likely lose all of her hearing.  This was pretty devastating.  At firs, we accepted the idea of hearing aids because it meant she would be able to hear.  He hearing loss was only in the mild to moderate range, so it wasn't that bad.  Then to find out she would end up being deaf, and there was nothing we could do to prevent it, that was hard.

As of right now, Eliza wears hearing aids.  They seem to help a lot.  She responds to sound really well with them in, like any other baby would, so we are thrilled.  However, we know that down the road, that won't be the case.  We have come to terms with that, and have accepted it.  She may end up being deaf, but she is still our perfect little girl.