Yesterday afternoon I had a time where I was deep in thought about all of the things happening in my life right now. I know that I have mentioned that there are things that I will miss out on no matter how many people work to keep me included. I have said it before – it is unavoidable. I had a moment of clarity when I realized that while it’s true that I am missing some things that I would not have missed if I could hear, if I wasn’t deaf I would be missing things that I will now get to experience. Simple thought, but profound for me. People in my life will make sure that I don’t miss the important things because of my deafness, it’s the little details that I will miss out on. Those things are definitely a part of life, but I think that what I will now get to experience and see happen in my life and in those around me is so much greater in value. I don’t want to miss it. People rise to challenges. People reach deep within themselves to help and be there for each other. People grow and change from these things. God guides us along our path. Character is built. Lessons are learned. This is not special and unique to me and my situation. This is how God made us and how He molds and shapes us to be more perfect and how He makes all things work together for the good. It always amazes me to look back and see the “domino effect” of major life events. I can’t wait to see what happens in the future!

Had an early morning appt. today for the second of my three injections. Everything went well. For some reason it was a little more painful/uncomfortable than normal. I think the doctor (not my usual one) wasn’t as gentle as before, but it’s not too bad and it’s done now! Only one more to go! My hubby made the trek with me and afterwards we had breakfast out. I haven’t been able to eat much the past few days with the stomach bug, so I was ready for some real food and it was delicious. The company was even better, of course. I’ve dropped 10 pounds this week! I have no doubt that a significant part of that is some of the excess fluid I was carrying because I can tell a huge difference in how I feel. I’m not nearly as out of breath when I move around, I can get up and down much easier, my joints don’t hurt so much, I can breathe better in general…There’s no doubt the fluid is the major factor in my discomfort over the past year. I’m going to work really hard to avoid retaining fluids as much as possible! So far I haven’t really had too many side effects with the high dose of prednisone. My face and chest are much redder than normal again. Yesterday I was awake all day and had problems sleeping during the night. I actually expected that all week. I guess being so sick overrode the steroid effect on those days because I slept a LOT on Tuesday and Wednesday days AND nights! Another sign that I’m feeling better, I guess! It has suddenly dawned on me that this is a holiday weekend. It seems weird not to have any plans, but I don’t really mind. We’ve never celebrated any holidays as religious days, they’ve always been celebrated as family gatherings and traditions. Because my hubby and son have work schedules that do not take time off for holidays it has always been a challenge to make family plans with everyone. This year Kinsey is in Florida, Chet works, Cory works, and Cody and Jessi are heading to North Dakota to celebrate with her family. I guess that leave me, Nicole and Owen! I know she has plans with her side of the family in the evening. Weird this year! I usually try to do something, but between being sick and everyone having things going on and everything ELSE that’s been happening it’s going to be more laid back! The truth is it might be nice to have such a low-key day this year. It takes a lot of energy to communicate and be in groups right now and I’m still recovering from being sick and just using more mental and emotional energy to adjust to everything. Trying to put together a big family dinner, too, might have been too much. We have lots of big family plans coming up in the next months, though! A first birthday party, graduations and trips to OK and FL and showers, and a special wedding……….fun times! 🙂 I’m really looking forward to it all!

I wasn’t feeling well when I made my last post, and right as I finished it I had to make a run for it – I caught the stomach bug that has been going around our church. I’ve been pretty sick the last couple of days. Thought it was better yesterday, but later in the day it reared its ugly head once again. So far so good today. I’m taking it easy. Basically when I wasn’t making a run for it I was sleeping, so I think I’m making progress today – I haven’t needed a nap yet!

I’m feeling more positive about my deafness. I think that I am hearing a little bit better than I was at its worst. Not much, but enough that some of the time Chet can speak to me and I can understand what he’s saying (he says he’s speaking VERY loudly!). Even if that gets worse again, I am truly confident that we will get through this just fine. I believe there will be blessings I can’t even imagine. I hope there will be for others in my life as well. It is so very encouraging to me to hear about how this situation has impacted others for the good – one person I know is planning to become an ASL interpreter for a career as a result of this and I think that is so cool! It makes my day!

I find it interesting that last week before my hearing loss happened I was studying Psalm 25. I prayed the same prayer that David prayed asking God to “4 Make me know Your ways, O Lord; Teach me Your paths. 5 Lead me in Your truth and teach me…” It was only a day or two later that my hearing loss occurred. Maybe this was an answer to that prayer. I don’t know. It certainly is true that a situation like this is full of life lessons. How can you regret that? It’s a blessing.

Today I was reading another Psalm and I was so encouraged and strengthened by this verse that I wanted to share it with you:

Psalm 28:7:
The Lord is my strength and my shield;
My heart trusts in Him, and I am helped;
Therefore my heart exults,
And with my song I shall thank Him.

Today, I am reminded that my strength has never been my own, it’s from God and I am not afraid. I’m feeling grateful, blessed, and full of praise.

A lot has happened in the last few days. I’ve been thinking about how smooth this transition has been going because of all of the technology that allows me to still function. I thought that although it’s another change, it wasn’t going to be too hard to adjust to. I thought that since I’ve already experienced the episode last year of fairly severe hearing loss that I had a good idea of what it would be like, so even though it takes some getting used to, I thought overall this wouldn’t be too hard. I was wrong. I think it is just now starting to sink in how dramatically this changes my life and the life of my family.

It is still true that all of the events of last year have made a huge difference. I’m facing many new problems and obstacles and at least I have some solutions and ideas on how to solve them. I learned last year to rely more on God as I adjusted to life changes that were out of my control. That is valuable. That is helpful. I’ve been home alone a lot over the last few days and I think that is part of why I didn’t realize the full significance of my new hearing loss. I expected certain things to change – phone calls, church, interacting with store personnel, ordering coffee or food, etc. The thing that I am coming to realize is the dramatic impact this has on my home life. Last night Chet and I went to a favorite restaurant for dinner after he got off work. I knew ordering and interacting with the waiter would be different. That didn’t bother me. I’ve learned to explain that I’m deaf and people work with me.

What did bother me was that Chet and I have difficulty having a conversation now. It seems so obvious, but it wasn’t for some reason. For those of you who took the ASL class, think about the sessions where we weren’t allowed to speak with our voices, only sign. Think about how hard that was. It took so much effort. You had things you wanted to say, but had to figure out a way to communicate them. It’s hard. It’s tiring. It’s frustrating. That was for a class. This is what it is like for my family and friends to talk to me now. Obviously, I can speak with my voice, but they cannot speak to me with theirs. I cannot hear them. I cannot hear enough sound to lip-read most of what it said. I can follow some speaking, but not much. This is hard. It’s not something you work at for a half hour or so and then stop “playing the game.” It’s my life at this point and there’s no end to the effort. That is hard. My husband and I have a relationship that is close and we have always communicated well with each other. I know that we will find solutions and I hope that this is temporary – either through regaining some hearing again, or cochlear implants.

A friend told me about a new app for his phone that translates voice to text. Chet and I both installed it last night and during our dinner he spoke into his phone and then showed me the text of what he had said. It worked. It takes some getting used to. It is a very helpful solution. It makes me sad. We came home and watched some tv. We’ve been using captions on the tv for years, so that felt normal. Cody came home shortly after that and generally we take a few minutes to catch up and hear about his day. I couldn’t understand that either. He used some sign language and the captioning app on the phone to give me some idea of the discussion, but some of it ended up being just between him and his dad. It’s just not practical to “translate” every word for me. This also makes me sad.

I’m starting to realize how profoundly this is affecting my interaction with my family. I know this is probably the hardest it will be. We’ll find more solutions and things will likely improve for me one way or another at some point. It’s a lot to take in and it’s sobering. It’s a good reminder that we are not in control of our lives (even though we often feel that we are). God is in control and when it seems hard or scary and you don’t see exactly where you’re going or how to get there, you learn to rely completely on Him. I know it will be ok. I think I just need time to let it all sink in….

When I decided to take a break from the blog back in December, I never intended for it to be this long!  Honestly, I was about as exhausted mentally, emotionally and physically as I can ever remember being.  So much happened last year and right around the holidays was when it got the most busy.  It was wonderful to spend time with our loved ones and it was also wonderful (and necessary) to take some time to regroup and recharge after things began to settle back down again.  Physically, I am feeling the effects of 9 months of steroids.  I’m heavier and weaker and have more aches and pains than ever in my entire life.  I feel 20 or 30 years older than I am!  I’ve been working on a low carb healthy diet (and have dropped a few pounds already even though the doctor told me the drugs might still be in my system and affect weight loss for another month or two) and plan to start going to a water aerobics class soon to get my body moving again.  Last week I also decided it was time for me to get back on here and start writing again.  I was trying to decide what exactly to write about since my hearing was stable and I felt that I had basically adjusted to my “new” situation.  Turns out that once again, things have changed! 

Chet and Cody went out of town  last week and I was alone for several days.  It was during that time period that I had another major hearing loss episode.  On Thursday morning, I called my mom on the Captel (captioning telephone).  I don’t always need the captions now (since I recovered some hearing from the episode last year).   Sometimes (with the extra adjustments this phone has) I can follow an entire call by voice alone.  Sometimes I need the captions to fill in the blanks for the words I miss.  On this particular day, I noted that there was a very “hollow” sound (like when you would expect to hear an echo, only nothing was repeated, just the hollow sound) and there seemed to be some distortion (slight) in mom’s voice.  I just thought it was the phone connection at the time.  I spent the rest of the day out and about by myself, so there wasn’t much communication and I never thought anything else about it until later that evening when I was home and wanted to watch some tv.  I was wearing my hearing aids and there was the same hollow and distorted sound.  It was obvious that my hearing aids didn’t sound “right” and even making them louder did not help me – sound  was too loud but still not very distinguishible.  I knew then that something was up.  My phone and hearing aids both would not be having the same problem on the same day.  I spoke out loud a few times and realized that I couldn’t hear my own voice very well.  The next morning, I did another test call with my mom on the phone, and there was little doubt my hearing had changed.  I am thankful for all that happened last year, because I was able to call the clinic and explain what was going on by myself with the captioning phone.  My hearing test there confirmed what I already suspected.   I had a dramatic hearing loss in my “good” ear.  It actually is now worse than my “bad” ear.  The doctor was very disappointed.  It’s only been one month since I finished a 9 month course of steroids.  My hearing loss is now severe to profound in both ears.  The doctor and I agreed that another long term course of steroids is too risky to my overall health.  I had a steroid injection to my eardrum again and am back on a high dose of oral prednisone for now.  The plan is that I will have 2 more injections – one on Friday and then the last on the following Friday.  A week and a half later, I will have another hearing test and meet with the doctor to discuss the results.  My hearing is poor enough now that I would qualify for the possibility of cochlear implants now if there is no improvement, so I am also on the schedule for a cochlear implant evaluation on April 17.  If my hearing improves to the point where I no longer qualify, then I’ll cancel. 

There is a dramatic difference once again in what I am able to hear.  Because the hearing aids I have are a bi-cross system, they are designed to bypass my bad ear (it is considered unaidable – I do hear some sound, but it is distorted enough that it is not considered usable sound) so the device I wear on that ear picks up any sound on that side of me and wirelessly transmits it to the hearing aid on the “good” ear and that ear processes all sound that I recieve.  Unfortunately, in this scenario, it means that all sound is now going to my worst ear with the hearing aids, so I am hearing better without them.  The fact is, I’m not hearing much.  It’s funny how circumstances change perspective.  The clinic deemed my right ear “unaidable” but now that it is my best one, I have a newfound appreciation for what it still can do!  I am able to communicate one on one in a quiet environment to some extent.  By that, I mean that I can communicate.  I miss a lot and the person has to repeat some, but I am getting the gist of it and able to respond, so that’s encouraging. 

At church I found that the church listening device is now better than the personal one I have been using.  If I put it on my (now) better ear and can see the speaker’s mouth so that I can do some lip-reading (and I concentrate very hard) I can pick up the gist of what is being said – at least to some extent.  I missed a lot.  I could hear some singing – mostly the song leader through the device, but enough to tell where they were in the song.  I tried to teach my Sunday morning Bible class and realized in the first 5 minutes that I was going to need help.  Prior to this episode I felt it was probably good for the kids to learn to interact with someone who has a disability and I didn’t feel like it was hindering their learning/Bible time.  I have reached a point where I feel that me teaching them would be a detriment to their learning – at least until I get implants or improvement of some kind.  I had to get someone to come in and take over for me.  It takes a lot of energy for me to communicate right now and I think it’s probably better for me at this time to save my energy for the assembly and trying to participate as much as possible in that.  I decided to attend flock groups last night.  I knew that since it was in someone’s home that I would not be able to hear anything during the devotional, but felt that I should go for the fellowship anyway.  I’m glad I did.  Truthfully, I heard zero of the lesson and zero of the singing.  The teacher for that night typed the song numbers on his computer for me and typed out what scripture they were on during the devo.  I could only tell people were singing because I could see that they were.  All I heard during that entire time was a few occasional sounds that I think were babies making noise.  I read the songs to myself and made melody in my heart.  I read the book of Esther to myself during the discussion knowing that the group was studying and talking about that book, too, even though I don’t know what they were talking about.  I wasn’t sad about it.  I went in with the right expectations.  I’m so glad I was there.  Several people made the effort to speak with me and hug me and that means so much to me.  It’s not easy to communicate with me anymore.  To do so means that the person is making a choice and an effort.  I am amazed by the patience, the cheerful attitudes people are showing me, and the incredible love being offered by them by making the effort to keep me included.  Several have talked about needing to review the ASL they learned (I need to also!) and one sweet young woman wrote me an email last night saying that she wanted to think of a way to keep me feeling included in all of the happenings and thought maybe we could start sending each other emails.  Some have teared up a bit and shared big hugs and “I love you”s.  Some have sent me sweet notes and messages. I am so blessed to have so much support.  I decided that I need to be on guard about not choosing to isolate myself.  The nature of my situation means that I will be isolated in some ways and miss out on some things – it’s unavoidable.  I think it would be easy for me to decide to stay home from things like flocks or other activities because “I won’t be able to understand anything anyway.”  I don’t want to make myself more isolated by doing that than I have to be.  If I hadn’t been there last night I would have missed so much encouragement for myself.  Maybe my presence will also help encourage others.  You never know. 

 I feel that God has prepared me for this new change very well with the events of last year.  I need the technology I have  more now than ever and it’s all already in place and I understand how to use it.  I have a good framework to start with now regarding technology and options for the deaf/hard of hearing so that as I learn about cochlear implants I have a better understanding of what I am reading and learning and how to add it to the devices I’m already familiar with. 

I honestly have mixed feelings about all of this.  I don’t really know what to pray for.  A part of me thinks that maybe it’s better if I don’t recover any hearing and I can move on to the next phase of cochlear implants.  It would be nice to be “off the roller coaster” and just move on.  A part of me thinks that natural sound is always better than aritificial sound and I should not wish it away.  Ultimately, I realized that I do not have the wisdom to know what is best in this situation, but I trust completely that God does.  My prayer is that He will use me however I can serve Him best in the kingdom and I know that is also what will be best for me.  In my prayers, I ask that if recovering my natural hearing is best, then I will respond to the treatment and recover.  If losing my hearing is best and the world of cochlear implants will be better, then I pray that I will not respond to treatment.  I noticed this morning that I am hearing a little bit better than I was yesterday.  I don’t know what that will mean ultimately, but I have to trust that God knows what He’s doing and I just need to go with it. 

Thank you for caring enough about me and what’s happening in my life to take the time to read my blog.   Please pray that God’s will is done in my life and that He will use me however He sees fit.  I know that is what will be best for me.  Please also pray for my family – they are going through watching their wife, mother, daughter, sister go deaf and it is difficult for them at times, too.  Thank you for your love, encouragement and patience.  It means a lot to me and makes a big difference in this journey!