I have something in mind that I want to type about tonight, but first I shall update on Kotah a little.
Kotah is doing ok. Her nights/sleep times are still pretty tough. With the tracheomalacia and laryngomalacia, her airway is floppy which causes her to cough. It sounds weird and dry, almost like she is choking on air. She did that today in church and alarmed a few people. She also continues to be a chameleon. This morning, her face was blue, but her sats were 99. As it stands right now, we will not be pressing for answers at the moment. (Sounds like it is some kind of justice system case thingy. With all the research, sometimes it feels that way.) I am just so worn out. Going to specialist after specialist who all agree somethings wrong but cant pinpoint it wears at the stamina of this mother. Looking at her you would never know something is wrong. She is roughly 60-75% on her charts, she has no development delays that we know of so far and no immediate life threatening problems. Her communication is taking off. Skyrocketing. Yesterday she said to Ty : "Dada, I wan a pupu." (Daddy, I want a puppy.) She interacts, she plays games, she pretend plays with toys, she pretends to read, she sings, she loves to dance, she can ask (read Demand) for what she needs, and she is trying really hard to walk. Due to all of the above, and the fact that the insurance wont cover genetic testing and the doctors office for genetic testing wont go over her medical history before charging us up the wazoo for the blood work, we have opted to take a breather. To enjoy the good days without all the doctors visits. In a few months we will be doing a few check up testing to see where she is now throat, heart, brain and sleep wise, but until then, we are on break.
Now onto the real reason for the blog post tonight.
As a precursor to the following, I should like to make it clear that what I write about I have talked with Ty about already. This is not a Sarah airing dirty laundry. And Ty will proof read (when he gets done with homework) before I post. But this is from my perspective. Every story has multiple sides. How I deal with and work through things and how Ty deals with and works through the same thing AND how we as a couple work together through the EXACT same thing are three very different ways. This is a mix of Sarah's way and as a couple's way.
This week we saw a second doctor for Ty's hearing. The first one was a few weeks ago and it wasn't a good experience. It ended after over 2 hours and 4 different tries of hearing tests with the audiologist saying she didn't know what was wrong but that it couldn't possibly be hearing loss and basically insinuating that Ty was faking it.
I am hear to tell you that Ty does NOT fake his hearing loss. Sometimes he will forget to turn off the house alarm and go out the door, he doesn't hear it. He can't hear the oven beep, or microwave, or Kotah's monitors. He has to lip read in order to understand what you are saying. Sometimes small, generalized sign language helps too. If you are behind him, he cant hear you. In the car, in a tense environment, in loud places, he can't.
The second doctor was great. He was very patient and listening. Which is saying something because we had both girls there getting into everything and interrupting every sentence.
Katie was very invested in this visit. She and Ty have a hard time communicating. Since she could talk, I have been teaching her to speak up, make sure she is looking at Daddy, and enunciate her words. They can clash very easily, because Ty does not understand what she is saying, it had gotten to the point that she wanted only me. We have been working slowly on building and nurturing a healthy daddy/daughter relationship by having me make sure Ty knows what she is saying, Ty focusing a lot on her when she is talking, and subtle parenting helps. We had a breakthrough the other day when she was sad and I coached Ty through how to talk to and help her. Since then, she has really started to open up to and be more trusting and patient with communications with him, but it still is a work in progress. Yesterday she needed help in the bathroom. I was outside and Ty was less then 15 feet away, on the couch. Thought her could hear something, but didn't know where it was coming from, or that it was Katie calling for help.
That seemed a little like a side topic but it will be important in a few paragraphs.
Back to the doctors office. As he continued to run the tests, he became more and more astounded. He continued to ask me questions and try different things. When we finished up, he showed us the results. At 125 decibels, Ty could feel the sound on his brain, but not hear it. 125. When not looking at my lips, he could not understand the list of single words I read. Not one word from the list. Hearing aids are not going to help. The doctor was ready to diagnose him with 100% hearing loss. Deaf. At that point Katie burst into tears and started hugging Ty and sobbing. I'm pretty sure Ty and I felt the same way. We kind of just looked at each other and at the doctor, wide eyed and not saying much. He mentioned a few other things to try and wanted to hear back from us after Ty's neurology visit this upcoming week. He made a few statements such as "I don't know how you are functioning. It truly is a miracle." "How on earth are you holding down a full time job?" "How are you even surviving in school?" "You're about to graduate?!" "This is worse than any case I have ever seen, and I work with seniors all day long." And the kicker, the REAL reason I wanted to post tonight, "How long have you been married? Going on 6 years? How are you even still together?"
How indeed. This. This is what I feel the need to post on tonight.
**The following will be personal and true. Truth is sometimes hard to look at in the face.**
Ty and I met after he returned home slightly early from his mission due to illness. His cousin was my best friend. We first met in her basement while playing attack ping-pong. I thought he was quiet and shy. He wore his cowboy hat, was skin and bones, and didn't say much. We were in the same singles branch. He was in charge of calling a number of people to remind them of extra activities. I was one of the people on his list. I never went. One time, he didn't call me and I went. It was a ski/snowboard trip. I had a broken foot and couldn't participate, but wanted to go to meet guys. I was at a point where I was getting over a breakup enough to feel like talking boys again. I knew he had a truck, my crappy car wouldn't make it up the mountain, and I knew his name. So I told, not asked, told him I would be riding with him. It was me and 5 guys. I figured that between all 5 I stood a chance somewhere. Ty spent the entire time talking with me, playing games and sharing his bag of mini carrots. A few weeks later, we went on a date. 2 weeks later, another date. In between, we walked and talked at night. The next week we were engaged. I liked him, let me say that before I continue on, I really did like him, and he liked me. But it was NOT love, at least, not in a healthy way. The only reason I said yes was because God told me to. The only reason Ty asked was because God told him to. The BIG reason why we both agreed with God on this was because we both wanted to escape our home life. Neither was a good situation for us and we wanted out. God knew that we both had learning and growing and healing to do and that, if we were willing to work on it, we would be able to do it together.
But we didn't know that. Most of the excitement for us was getting out of our homes. Looking back it is easy to see. In the moment, we thought we were in love. We hardly knew each other. We tried during the engagement period, but it was a rough 5 1/2 months. 2 weeks before, I almost called it off. Sure, we kissed, we cuddled, we were tempted physically, there was the hormonal excitement, we enjoyed some of the prep for the wedding together, but it was a very young, unstable and unhealthy kind of relationship. There are so many other details and stories. But we kept going back to the day when God told us to marry each other. So we went through with it.
The first few months were ok. Sometimes blissful, sometimes aggravating, but ok. Then my dad left my mom. As the oldest I felt it was my job to take care of my siblings, Ty tried to step in as a good role model. Neither one of those was a good idea, but we were still in unhealthy mindsets, trying to survive. A month later we both lost our jobs. We moved in with his grandparents. We made it through the holidays, but in January, with still no jobs and a lot of emotional pain, Ty and I both settled into a depression. Survival mode kicked in after a few weeks and we both got jobs, but our "happily ever after" ideal had taken a hard hit. Our marriage was pretty rocky. We tried counseling, but it seemed to go nowhere. There were many hidden thoughts on both sides of ending our marriage. Most not spoken about with each other, but we had both stopped trying.
Then I got sick. Very very very sick. In a story for another time, I received a personal witness that I COULD make this marriage work and that I NEEDED to do so. And I realized something, I WANTED to work on our marriage. It was enough to pull me out of the funk I was in and make me try. In talking with Ty about it at the time, it was also enough for him. We started trying.
It has been a long road since then. We have had many major ups and downs and the normal everyday ebbs and flows. We continue in therapy. At sometimes it is on a more consistent schedule than at other times. Ty's hearing loss is a big road block in this, but we have never really thought about it. We make do. I make sure he hears and understands me. When he is talking with someone else, if I am around, I make sure he understands what is being said. Due to not wanting to get in trouble growing up he learned how to respond in a way that looks as if he hears, but he doesn't. It was a survival technique. He will nod and say 'Uh huh" or "really?" or "Ok" to keep the conversation going. I have to check and make sure he is understanding, not just surviving. I have taught myself to do this. Katie is learning to do this. We don't want her to have to, but it is where we are at right now. We are considering ASL classes for all of us. We already use quite a bit one or two word signs, just haven't really paid attention to it much. Even Kotah knows how to sign "more" and "please".
Wow. This is a whole lot of rambling to get to my very simplistic point. Marriage takes work. Katie made a statement during her sobbing: "A a a a are we gonna a a a have to th th th throw my d d d daddy away b b b because he is B B B B BROKEN?" We quickly reassured her that would not happen. We talked about how if she broke a leg or it Kotah only had one arm or if Mommy had no hair we wouldn't throw anyone away.
Ty and I have learned this. We have had many hardships and heartaches in our short 5 years of marriage, we have come close to being done. We sometimes fear the future. But we KEEP WORKING. I can't promise that 10 years down the road we wont be in a very different situation and split then. I wont promise that. Not to my children, not to Ty, not to myself. I am not focused on 10 years. I am focused on this moment, tomorrow, and on eternity. I will continue doing what it takes to communicate with Ty in this moment, so that we can be together for eternity. I will plan on the phone calls I will need to make tomorrow to see yet another doctor. Just now as I was having him read through I had to turn my head to him and make sure he understood me, 1 1/2 feet from my face. Yes it gets frustrating. There are times we both get tired of it. There are times I give up trying to talk to him in particular moments. There are times he snaps at me for repeating something over and over again because I'm not sure he heard. But him not hearing will not destroy our marriage, hearing and communicating are two different things. Communication is the key to unlock the door. The door that opens to begin to learn and practice and even fail sometimes and to try again at having a good relationship. Whether it is with a spouse, or a child or a friend.
I don't really have any good thoughts to end on. This is not the first time Ty and I have been asked by astounded people how we are still married. But I want to say, it is because we want to be. Because we try. Because we fail and try again. You do not marry Mr (or Mrs) Right. The person you marry BECOMES your Mr Right.
P.S.
If you have the opportunity to speak to Ty, make sure you look at him. Make sure he is paying attention to you. Sometimes ask him if he understood you or ask questions to have him affirm that he is understanding. If he is nodding his head, saying "Uh huh" "Ok" or other one word responses, he may not be hearing you. If he responds in a weird way that is totally off subject, he may not have heard you. Don't get frustrated. That shuts down any hope of a good conversation at the moment. Ty is not aloof, shy, stuck up, mean or rude. He is a great guy, funny, sweet and kind. But he can come across as the previous if there is not good communication going on.