We rent a small house in a small town. I am a mom that works as many days as she can but overall I am a mom. What do mom’s do. They kiss boo boo’s, they wash clothes and pack school bags and COOK.
Early in the month my oven quit on my stove. I really don’t blame the oven it was the digital display that went out. Without those magical push buttons there was no way to turn on the oven. How stupid, why does a simple button need to control all. Is old fashioned knobs to good for a stove now days. Stove worked oven sat cold.
We waited a few weeks and got a call that our landlord found another stove and was bringing it in. I was so excited, it was a used stove but heck I didn’t care. It was a very nice looking stove but once it got out of the freezing temps of a storage unit, the freezing temps of the back of a truck and into our 68 degree home we discovered there was something terribly wrong. The stove had such a horrible smell that it burned our eyes and lungs. It was awful. Something had to have gotten into the insulation of the stove and it was ruined. No matter how nice it looked didn’t make up for how bad it smelled. It was like the worst 24 hours of my life. The house smelled so bad we couldn’t be in it and I had no way to cook for my family. It is like a basic instinct a mother has. To make a meal for her family. Oh I hate the question, “What are we eating tonight.” but I feel it is my job, a job I take joy and pleasure in. It was only 24 hours but it felt like I had failed. I had a full on anxiety attack the next morning. There was a smell in the house and I couldn’t even boil a pot of water. When I called my mom I told her my whoes and then I couldn’t even boil a pot of water. She has a way to put things into perspective. One- Why do I need to boil a pot of water at 8am. Two- this will pass and a new stove will be there shortly. That afternoon the stinky stove was taken out of the house and the spot sat empty where my cooking vessel should be.
Our landlord was looking all over for a good condition stove. Saturday I had the idea of going to the Habitat for Humanity ReStore. What a treasure trove of items. I found my stove!!!! Looking at it I knew I needed this stove. It was odd I walked around the store and had to keep walking back to this stove. Called my landlord up and said cancel getting a stove by tomorrow I found one. This is an old stove it has a vintage look that I love. There is chrome on the corners. A green sea glass color on the oven glass window and behind the knob controls. Yes knobs no digital display to go out on me there.
My heart is happy. I can provide food for my family and friends. We weren’t home an hour with the new stove and cookies were baked. Last night a meatloaf and green bean casserole (were in Minnesota don’t ya know). Today was a pan of brownies and an egg bake for dinner. I am sure supper will go back to a chore but for now I am loving it.
My role is fulfilled as a mom. I am sure many would disagree but it makes me feel like there is a purpose, I know my role and I can excel at it.
I just need to share something here on my blog since it started on my blog. A while ago I received a comment on here from Hands and Voices. They asked if I would write something would tie in my hearing loss, my blog and my children. This is what I came up with. It was posted today on their website. I am pleased to be asked to do this and I hope some other family will get support reading it.
Last weekend my husband and I hosted a couple friends for dinner and an evening at our house. The wife in this couple is deaf and her husband is a sign language interpreter. As we sat down at the table to eat an ease fell over me. There was no need to feel like I needed to fake understanding with nods or smiles. I have a moderate severe hearing loss and I usually feel anxious before a meeting like this one. That night was wonderful we had something in common, lack of hearing and knowledge of lack of hearing.
We need to find where we belong. We need to find a community or a group where we all get each other. If that group is about sports, animals, children, or in this case hearing loss. Having a group or even a few individuals that understand is a comforting thing. It doesn’t turn into an embarrassment when you ask for something to be repeated or reworded. You don’t get the dreaded “never mind.”
I grew up in Minnesota in the metro area. I was a child with an ear infection every other day it seemed. Ear tubes put my ears more times than I care to count. I know I grew up with a hearing loss now that I think back on my childhood. I never understood how people could understand a whisper. Someone putting their mouth to my ear was just hot air I could feel. Was that how everyone experienced this? Being at a friend’s house and having them all talk at once or talk with music playing, none of this I could understand. I wondered why this seemed so easy for other people. Why did whispering between girlfriends seem fun not an anxiety filled moment. As I grew up and went to college (majored in Communicative Disorders) I realized more and more that yes I had a hearing loss. I just had to get to the point of acceptance.
The past couple years I have come out of my shell and embraced hearing loss as best I could. Hearing aids were purchased. My secret was out. I joined a couple groups that deal with hearing loss and being hard of hearing. I started to put my feelings on to paper or a computer in today’s vernacular. I started my blog Musings of a Momma. I started this blog as a stress reliever–writing in the evenings. When my hearing took another dive down, I decided to write more and focus more on being a hard of hearing mom. My writing got notice by the HearStrong Foundation where I was named a HearStrong Champion. This has to be one of my proudest days behind the birth of my children.
One thing I wanted for my children was to make sure their hearing is on track. I remembering taking my daughter to an audiologist and she tested around a -10db across the board. I guess she is hearing fine! My son came along five years later. He didn’t babble much or start talking till three years old. I had some people telling me autism and some telling me he couldn’t hear. We pursued both paths with him. He was found to be on the autism spectrum high functioning. When we went forward on his hearing we found out he had a mild conductive hearing loss. We continue to have his hearing checked every six months. It has dropped at times and we have done tubes, and adenoids and tonsils out. I just took him to the audiologist last week and his hearing has dropped another 10db. We are off to the doctor this week to see if something medically can be done. He has had no ear infections or fluid in his ears so I am stumped. Then we head back to the audiologist. Just a wait and see with him. He does use the FM system at school where he is in 1st grade.
A great resource we were told about was MN Hands and Voices. Our family attended a family event last spring. Our whole drive my husband and I wondered if we would fit in, our son only has a mild loss. What we found was open arms of acceptance and a wealth of information. We learned a mild loss is a loss and it does affect a child at school. We had some IEP questions answered and found some new friends in the process. It was like the dinner we had last weekend we found that place we belonged. We found a place that understands our questions, doesn’t get annoyed with the What?? If you didn’t hear something right away, they got it. I want my son to know there is a place that we belong and people that understand. MN hands and voices has been that place for our family with our son this past year.
This little boy is such a joy in my life. He brings laughs, cuddles, and stress. The past few weeks I have had my mind racing. I have been quiet on here and I believe it could be because my mind is on overdrive thinking speculating and wondering what will happen.
The past month or so Henry has said WHAT every other word. He was no longer responding to his name being called. I could tell him his hearing was down. His dad and I were concerned and got him into the audiologist. Henry has gone to an audiologist every 6 months since the age of 2. We always go to the same dr and Henry loves the experience. He loves the dr and has so much fun laughing at all the funny things the audiologist “finds” in his ears.
This appt his hearing dropped another 10 db’s. He has a conductive loss which means it is from his outer ear to his middle ear. It didn’t look like he had an ear infection. He has had tubes, adenoids and tonsils out. I really wasn’t sure what was going to happen. I have a bad habit of speculating on what could happen in the future. I am thinking ahead if his hearing drops more. I am thinking of struggling to hear of what is going on in school. I am thinking hearing aids, affording hearing aids. I need to turn that switch off in my brain. I need to live in the moment and know what happens it will be ok.
We received the report from the audiologist suggesting we take Henry into the doctor and then back to him in about 3 weeks for a retest. The report stated that there is a family history of hearing loss. He has a hearing loss in both ears and he has great chance for hearing loss in the future.
Friday my husband and I took Henry to the doctor to check his ears and discuss the results and what our next steps should be. He was given an antibiotic for some fluid that was in his middle ear. He was also given a nasal spray to see if that can open up the middle ear and eustachian tubes in his ears. I hope this will work and do the trick. We are to complete the prescription and then head back to the audiologist. If his hearing test doesn’t look any better than we will be referred to an ENT.
So for now I want to live in the present. No speculating that surgery or an ENT visit will take place. I will just give him the medicine he hates twice a day and hope it is helping it all.
So for now I won’t worry about the future I will just love my little minecraft, tae kwon do, cub scout little boy.
Christmas means many things to many people. To me it is Family. Family we can see, visit with, feast with, and catch up with. Now that I live away from my family Christmas was something I was really looking forward to this year. We went to my parents house and stayed for 5 nights. That might be the most we have stayed in the nearing 8 years since we have moved. The big part of my whole life is Christmas day at my grandparents house. My grandparents lived right up the street from us growing up so always close but still a thrill to go each and every Christmas morning. We, my family, sisters family, parents, aunt and uncle, my cousins and spouse. It is a tight squeeze in the livingroom but it works and it is a day I look forward to.
Grandpa has been gone for many years now. He missed out on the years with all the great grandkids. Grandma keeps Christmas alive the same way she and grandpa did. One thing you have to know about my grandma is she is super organized. All the food that she provides and others bring is all written on a sheet of paper. Much like a spreadsheet. Everything is crossed off nothing is forgotten. Everyone has a present on each of grandmas piles of gifts. That is a big pile and each and every present in the pile has the same wrapping paper. A pile is passed out and everyone has a gift. My grandma has Christmas down to a science. I know this won’t go on forever and for that fact I savor every Christmas a little bit more every year.
Hope you all had a wonderful Christmas.
My parents with the kids:
Nana or Great Grandma with the kids:
The Whole Gang:
Christmas has come and gone. We have traveled across the state for six days and now returned home. During my time to the Twin Cities I made an appt for a hearing aid repair at Starkey Hearing Labs. I love my Starkey aids but living 3 hours away from my audiologist is not ideal. I do have a local one I could bring the hearing aids to but I prefer going to Starkey itself. Chad and I traveled to Eden Prairie, MN the morning after Christmas. I was not sure how long this visit would take. The hinge on the battery door on my right aid had broken and I had a clear coat on my left ear mold for a better seal had started to flake off. Everyone is so nice there, it is a huge place building after building. A very welcoming place to spend part of the day.
The visit started out with a cleaning of my ears. It is gross, there isn’t any other way to put it. Seeing your ear canal magnified 40 times on a big screen is gross. Watching them scrap stuff out is even worse but it feels good when done. While waiting in this first waiting room Chad and I noticed Bill Austin walk into work. Bill is the CEO of Starkey and in my eyes this is a celebrity worthy sighting. This man knows everyone in film, TV, and Music. There are pictures of him with celebrities all over the complex. It was like a TMZ moment seeing him walk by and smile and wave to us. My first thought was OH CRAP my phone is dead I can’t get a picture.
Chad and I got moved to another waiting room where they fit the hearing aids and make the ear molds. Bill Austins office that has the big CEO on his nameplate is right near this waiting room. Chad and I started discussing that we thought this was great that a CEO would have an office so close to the actual day to day activities of the office. There was no penthouse views, or the corner back office where no one sees you. We started talking about undercover boss. In that particular show the CEO disguises him or herself to go from the bottom up in their company and discover how it works and what doesn’t work. So often these CEO’s have no idea what happens in their business. We were then shocked. Here comes Mr Bill Austin in his white lab coat and starts working with a patient that is sitting just 5 feet from us. He was working the floor, not tucked in a corner. We were shocked and so pleased. Just like this picture shows is what he was doing in the office on Friday.
A few moments later he called my name and I went over to him. I felt a little star shocked. Looking ahead of me there were pictures of Bill meeting Mother Teresa and the Pope. I am just amazed. They ended up changing the case on the right aid so a new battery door. On the left aid they polished down the ear mold and put some new clear coat on it. He fitted them and tested them. He then turned to Chad and talked to both of us of what we should do if there is feedback. Sometimes there may be some that Chad can hear and I can’t and what he should tell me. He asked where we were from, general chit chat that was just really nice. I kept thinking about my daughter, Greta. She would be so jealous. She got to meet Bill’s wife, Tani, last summer and made a lasting impression in her life. Meeting Bill could have only made it better.
Staring at pictures like these make me realize how lucky I am and was to have this wonderful man that gives so much to the world talk with me on Friday. He is a very generous man and I am so pleased I was able to meet him. He told me to call if I have any problems. I wonder if he answers his own phone also, I bet he does.
Tree is up, presents are wrapped. Finished up my shopping today. We have our first family christmas celebration tomorrow. I know there are people that rock the ugly Christmas sweater. That just isn’t my thing. So I pimped or blinged out my hearing aids with some snowman nail foils. Now I will be wearing something Christmas like. I will have the Christmas cheer. Find something that give you a little cheer and a smile to your face.
This past weekend I was telling my husband I was so tired. I didn’t feel sick just so tired, like I could fall into bed and sleep for a full day. Then I thought of everything we had done this past week and I know why I am tired. This time of year is crazy. Is it a wonderful time of year but crazy. Here is our week in pictures and little words.
I made our Christmas tree this year. The kids gathered the sticks in the grove at the farm and I bundled them into our tree layers. We added some burlap and lights and we have our organic wall tree.
The kids saw Santa and Mrs. Claus at our local fire hall. Both kids were happy to see him.
My daughters first band concert. All the kids did wonderful and I got to claim the most beautiful flute player as mine.
My poor little man fainted and fell off the risers at school. They were practicing their Christmas program and Henry fell from a high riser and landed right on his face on the wood floor. Thank God I was working right down the hall and was there within minutes. Off to the doctor we went and they are pretty confident it was fainting and not a seizure. His face has some good bruises on it now.
Day after the fainting episode we are feeling better. All dressed up and ready for the Christmas program at school. A great program from all the kids.
Church Sunday morning, I know I shouldn’t snap a picture during the service but I couldn’t help it with this unscripted moment of pure sibling love.
Sunday evening was the Church Christmas program. Greta played an inquisitive child, she was comfy in her PJ costume. Had her lines all memorized, did a great job.
Henry was a serious shepard in the Christmas program. He did great as well as all the kids.
Last but not least is a Tae Kwon Do test for Henry. He earned his blue belt this week. He was pretty excited to break that board with his left foot.
Of course there is work, dinners, laundry, gift wrapping and all those other chores of daily living. Like I said I love this time of year, but I am tired.
The saga or the war rages on. I thought I would update what happened since the last post about the ongoing issue with Carmike Theaters and Captions.
I mentioned in my last blog post that we were going to have an undercover mission with a friend of mine and her husband. They went to the theater knowing they did not offer captions but just wanted to see what the reaction would be when they asked about them. What happened next just shocked me. My friend did not talk just used sign language and her husband did the talking. They asked if captions were available and THEY DO HAVE CAPTIONS and provided my friend with a Captiview device. I was shocked and even more confused after all of this. I am very glad that my friend got to enjoy the movie and understand all of it. To make matters even more confusing it was the same manager that helped me helped her.
I called the theater again trying to get a hold of a manager. I had no luck doing this earlier. I actually got the manager and it was the one I talked to. He apologized that he didn’t give me captions. Then he went on to say that a “Full Deaf” woman came in today and I gave her captions. She couldn’t even talk so she was full deaf and needed them. It was thank you for your apology and now go stick your foot in your mouth. I told him I wrote a letter to the editor and he was aware of this, I guess the paper contacted the theater. I also told him I was waiting for a response from the theater and he told me he got my emails but just didn’t know what to do with them. That same night I received an email from a district manager asking some questions about the day, time and person we talked to. I responded right away to the email. A step forward I was contacted??
Next morning I get alerted that my letter to the editor was published. Had to run out on my lunch break and pick up the paper. Not everyday you are published in the paper, well maybe if you write for the paper. Here is a copy of what was written and published:
We are in a day in age where there is equal equality to all…but is there? I was at the Kandi Carmike Movie Theater this past weekend with my husband. We were going to a movie on his birthday. I happen to be hard of hearing and I asked if there were a captioning device I might use for the movie so I could understand the dialog. I was given the response from a manager that those devices take lots of paperwork, signatures and time so we don’t bother with them. This really upset my husband and I. Paperwork is such a pain that we can discriminate an entire group of people from the movies. A simple no would have worked but to go on that it is a pain and burdensome was unneeded. I guess my money doesn’t need to be spent at the Carmike theater anymore. November 21, 2014 the HLAA (Hearing Loss Association of America) had a landmark deal with Theater Owners of America that come 2015 closed captioning for the Deaf and Hard of Hearing and Visual Description for the Visually Impaired will be required of all theaters. I look forward to this day, and I look forward to the day when the pain of paperwork and time doesn’t discriminate a group of people. We wouldn’t think of having a theater not wheelchair accessible, not all disabilities are visible.
I have not heard anything from the theater until today. I was contacted by CCAC (Collaborative for Communication Access via Captioning). After corresponding with CCAC they sent an email to the district manager and copied me on the email and response. The email was sent and I thought AHHH now we wait. A whopping 5 minutes later we have a response from the district manager that they have captioning and are in the law complete with pictures of the Captiview devices and the headphones. CCAC sent another email back to them thanking them for their speedy response but alerting them as it is nice they have the devices they are denying them to certain patrons if they don’t look deaf enough. They asked the theater to issue an apology. This email hasn’t been answered.
So again we wait…..
My last blog post was about the movies. I wrote that I am not a big fan of the movies because of the dialog being hard to understand. I am looking forward to trying captions in a movie theater. So what do I do over the Thanksgiving weekend, attend a movie. My husbands birthday was on Black Friday. I partook in the shopping frenzy with my daughter and Mother in-law. We arrived back to my in-laws house to find my husband laying in bed looking bored. Asked him what he wanted to do, he responded the movies. Sure lets go, we have built in babysitters here. Let’s head to the movies.
Instead of going to our local theater we went to a large national chain theater that was nearby. What happened next just shocked us both. I noticed they had a sign for the assistive listening devices, the headphones. They don’t work for me, not enough decibels That was fine I was doing this for my husband. We went to go get some popcorn (which is way to expensive) and there was a manager standing there. My husband looked at me and suggested we ask him if they happen to have captions available. His answer should have been a simple NO. The answer we got was “No, captions are a pain. You need to have paperwork and signatures. It is a pain to try and please everyone.” I was shocked to say the least and my husband was mad. We just looked at each other in amazement and went into the movie. I couldn’t get this out of my head. Would this manager dare say to some individual in a wheelchair that it is a pain to have a ramp or a row of seats that they could fit into. I ended up leaving the movie to go back out to talk to the manager. I wanted to know what this paperwork was, did I have to fill something out? When asked this their response was, “No, it is just a pain and we have nothing to offer you.” I inquired about the assistive listening devices wondering if they even had them and again I was told, “we have nothing to offer you.”
How do I deal with this? It has been near a week and I am still in shock. I have worked at numerous jobs where I deal with people and customer service. I would never dare tell someone that they are a pain and what they are asking for is burdensome. I am really hoping that this manager was shocked by the amount of people at the movies that day and was just stressed. I really hope he doesn’t have this attitude all the time. I wanted to give the theater time to respond before I take this further. I want to hope this was a huge misunderstanding and there would be an apology.
I tried to contact the theater, they don’t make it easy. Their website has a form to fill out and a manager will get back to me within 2-3 days. Been a week haven’t heard a word. Tried to call the theater, can’t get a regular person on the line. I wrote a letter to the editor of the paper alerting them and educating them about this, hasn’t been published…yet. I have now written a letter to the corporate offices for this theater chain. They have no working email or phone number that you can contact them with. Snail mail will have to do in this circumstance.
An experiment will be taking place this weekend. I have a good friend who is deaf. She communicates with me by voicing and reading lips. I am trying to learn more sign, so we can talk through sign. Her husband is a sign language interpreter. They are going to go to the same movie theater as we did. She is not going to voice only use ASL with her husband. They are going to inquire if they have captions available at this movie theater. Do they have anything they could offer her to use. We are very interested in what the outcome will be. I hope that I had a stressed out manager and they will be given good customer service, only time will tell. I am hoping for a simple NO, we don’t offer them at this time. We do have headphones you could try and use.
I want to give the theater time to respond before I take this further but with each passing day my blood is seeming to boil a tad bit more. I wonder what A Day at the Movies Part 3 will have to say.
Yesterday a group I am part of, The Say What Club, had the topic of going to the movies. What seems like such a fun past time to many can seem like a waste of money to some, me included. Why, simply because why would I want to pay upwards of $10 to sit and watch a movie miss half or more of the dialog and sit and think why did I go to the movies. Which in turn makes it more than a year since I have done just that.
What we were talking about with the Say What Club was closed captioning at the movies. I think this would be wonderful. I love watching movies but it is done at home either Netflix or a rented movie and the captions are always on. I enjoy having the sound streamed to my hearing aids but I still need the captions to get what I miss. I need to fill in the blanks. My family is used to the words on the bottom of the screen. My son is behind in the reading game so maybe the captions will help some or he isn’t as behind as he could be.
The next obstacle is where to go for captions. I am in a small rural town but very lucky we have a theater in town. It is a one screen but upgraded to digital theatre. Our theater does have assistive listening devices but I tried once and it didn’t do anything different then my hearing aids in fact it wasn’t as much gain as I am used to. Great for someone with less of a hearing loss but I need the captions. Our next theater is 30 miles away and I contacted them and the person I talked to wasn’t sure they had them. Well that isn’t encouraging. I have heard there is captioning at one theater that is 1.5 hours away. Is that really accommodating the deaf and hard of hearing population that I need to drive 1.5 hours away to watch a movie. Just doesn’t seem fair. Maybe a price to pay of living in a rural area, or maybe an oversight that this needs to be offered.
After all this discussing on the topic of movies yesterday I went to a movie last night. It has been a long time since I have been to our local theater. My daughter wanted me to go with her to the new Hunger Games movie, Mockingjay Part 1. We went on our mom and daughter date and it was fun. I thought an action movie I don’t need to hear the words it will be nonstop action like the other two movies in the series. Not quite right with this movie. Lots of dialog and I missed over half of it I am sure. I didn’t fully enjoy the movie aspect of the night but I loved accompanying my beautiful daughter to a film she had been looking forward to seeing. It was fun watching her be tense and jump at certain parts and just soak in the movie. There will be a day in the not too distant future that she won’t want to do this with mom so I will grab the chance now. I look forward to the day we can rent the movie and we can watch it at home. She will love to watch it again and I will love to watch it and “hear” the words.
This has been the week of movie talk. With the Say What Club, with my daughter and with a huge understanding between the HLAA (Hearing Loss Association of America), Alexander Graham Bell, and Theater Owners of America that captions will be offered in all digital theaters starting in 2015. I was so excited when I read this, how exciting. Article from the LA Times. I wonder if this will take place in my neck of my woods. I wonder how long it will take. I wonder if there will be heels dug in and protest. I just wonder….
Take care all and as they sing in one of my favorite musicals, Annie….”LETS GO TO THE MOVIES, LETS GO TO THE SHOW….”