Sublimation: when it almost rains, it almost pours.

The idea of the title being "when it rains, it pours." Sublimation is when it rains, but it evaporates before it touches the ground. It almost rained today, 5 times! Our guardian angels were working over-time today. All within an hour, we had 4 barely, and I am talking CENTIMETERS!!!!! barely miss accidents and 1 hit that could have been much worse than it was. And all of them were due to the inattentiveness of the other drivers! I think there must be a big invisible target on our car! Seriously!

The two that rattled me the most was the hit and the miss when Ty was driving. Silly us, we thought it was just me and switched drivers.... nope. We had been waiting to turn left and a car cut across two lanes to appeared out of nowhere and turn so we slammed on the brakes. We kept waiting for our turn, but the people behind us thought we had gone. About 30 seconds after missing the car that was turning, the car behind us accelerated into the back of us. In shock we just sat in the car for a few minutes making sure everyone was ok. Kotah was shocked and Katie was crying out of fright. We pulled out and off to the side. As I got out to look at the car there was not a scratch! Not even a hint that anything had happened... to either car! With how hard it had been, it was a huge miracle! Because there was no damage, the other driver and I agreed to just let it go. Silly me. Dumb. Within 5 minutes all of us had major headaches. Happily, we all got appointments with our chiropractor tomorrow. 

After that shake-up, we had to stop (again almost getting hit twice on the way) at the store to get some knee pads. Kotah still scoots and her knee gets scrapped and rubbed pretty bad. We ordered some but they were wimpy little things that disintegrated within the first two minutes that she wore them outside. That is when we switched drivers and headed home. As we were going through an intersection, out of nowhere, a truck coming the other way made a speedy left turn. Right at us. I honestly don't know what happened, I closed my eyes and screamed. I felt Ty swerve the car and I just sat there, braced for impact. When we came to a stop without being hit, I opened my eyes. Ty had saved our lives by turning and sliding the car out of the way. We again continued on our way, shaken to the core. This was nothing like a back hit. Ty is a very defensive driver. I am one who tends to put on the brakes. If I had been driving, we would have been hit. We both knew that. The truck would have hit Katies door full on. Ty saved her life. 

It still rattles me thinking of it. The headache from the previous doesn't help either. But there is a deeper meaning in all this. Nighttime with Kotah is very hard. For the past few weeks, she has not been able to sleep longer than an hour without needing help, slight stimulation or comfort. I hate mornings, mostly because I haven't gotten a night yet. I feel like I am letting Katie and Kotah down by being so worn out. Lately, I just want to be alone. To hide under my covers and sink into a restful sleep. My desire for this sometimes comes out in negative feelings of frustrating towards my family. The miss from the truck scared me. I am a "what if" kind of gal. What if we had been hit? There is a good chance we wouldn't have Katie here, or Kotah. Maybe even Ty. I definitely would have been alone then. Now before you start ripping into me right now about being all doom and gloom and to stop focusing on it, take a deep breath and plunge ahead for the next few paragraphs. 

The thought shook me. That is NOT the kind of alone I want. The almost accident was a reminder to me to be more appreciative of what I have, whether it is hard or easy. But why? Why does it take something to remind us? It is a cycle. A cycle of attitude, of mindset, of actions. In the Book of Mormon, it is called the Pride Cycle. In a college class, I did a presentation on this. It is called the Tytle Cycle. There are so many different depths that I could go off on with this, but that is not my intent. Mostly this is just for me to work on. Why? Why do I need "Lamanites" in my life to remind me to be thankful, to be humble? And not just when I am depressed, when I am happy and prosperous as well. Is there a way to change this? 

Such will be my subject of study for scripture reading tonight. What are your acts of rebellion and what stirs you up to remembrance? This is not a question that needs to be answered to me, just to yourself. And one more, do you really want to wait to be stirred up, or will you remember before? For me, I will remember now. and hopefully, by writing this out, I can read it again down the road and remember then, without the stirring. 

A continuation, clarification, CHANGE and the stupid internet.

After last nights posts, a few messages and conversations, and sleeping on it, there are a few things I wish to add.

1st. Least anyone be confused and think that we have an awesomely FABULOUS relationship right now, don't be. I remember when I was first married I worked at an office with 2-4 other women. I felt like they always had negative things to say about their husbands/significant others. I thought I was such a goody-goody for not engaging in those conversations. Let me tell you that now, at least once a week, usually more, I find myself complaining/venting about Ty. I see it as a way to work through my feelings with a safe secondary so that I don't come at him, guns a blazin' when I want to discus an issue with him. Heck, just the other day I was venting and a friend helped me to see a whole 'nother side to the problem. I am NOT a goody two-shoes when it comes to keeping marital issues private. Talking through it with others helps me. I talk. Thus another possible good explanation to why we are still together.

2nd. While I am very firm that marriage takes work, there are certain situations where I whole heartedly believe a divorce is necessary. If there is marital abuse, verbal, physical, sexual, mental, emotional or spiritual, if one parent is abusing the children or if there is infidelity AND if either the offender or offended is determined NOT to change, then I believe there is good grounds for a split or divorce. There are probably many other topics I am not covering in my blanket statement. Each situation is different. But thing that I forgot to add that is very important to what I believe in my previous post is this: CHANGE. Both parties MUST be willing to change. Change is a constant thing. Willingness to change = trying. A relationship doesn't stand a chance if the parties are not open to change.

3rd. The internet is stupid. More specifically scam sites on the internet are stupid. This is my post for today.

Last week I was on the internet. I saw a cool advertisement for a video clip, so I clicked on it. The next thing I know, I am signed up, via my Facebook account, for an online dating website called Zooks (?). It has access to who knows what and I instantly start receiving messages. I have tried to unsubscribe multiple times, but every time I try, it pops back up the next day. I tried reading through the book-long policies page and now I am even more concerned as to what they have access to. At least they don't have access to my phone because it is a very simplistic phone. Benefit of no smart phone.

My paranoia has set in as this was all done on my tablet, and now I am concerned they have access to my app purchases, internet access connecting to my account and the camera. I get that this may all be unfounded, but this is coming from a very non tech-savy gal who, in her younger years, believed that by listening to different radio stations, the radio station would send a bill to my house and my parents would know what I was listening to and I would get in trouble. In trouble from FM 100.3, really? I was messed up, let me tell ya.

But because of this, I feel it only fair to warn those poor guys on the site that are looking at my picture of the following:
I am happily married. It is not perfect, but it is happy. My whole account was a mistake. I am NOT interested.
The picture was from 4 years ago. It in no way honestly depicts me now. My hair is most days pulled up into a pony with frizzy fly-aways. My body is a wreck, I weigh at least 25 lbs more, my boobs differ between floppy sacks to over flowing milk squirters. Not very attractive. My face is sunken in, I have bags under my eyes and numerous come and go pimples.
Should my camera by some paranoid accident actually be hacked then I offer the following:
You have seen either one of the two or both depending on what camera they hacked. Front, back or both. :
Me pick my nose at 2 am because there is a sleeping child in my arms that just barely fell back to sleep and in no way am I gonna get a tissue
Me blow my nose into a dirty shirt because said child is now even farther asleep and I don't mind a little noise.
Me breast feeding my child.
My child laughing at my unsuccessful attempts to get her back to sleep at 4 am.
The inside of a diaper bag.
The view of the ceiling as the tablet rests on the desk (or the view of the desk, very very close up)
The face of my child as she concentrates on "finger painting" or another game.
My shocked face as I watch the weirdest things on You Tube.
My feet, or my knees. Thus showing off my unshaven (GASP) legs. The Horror!

This is the view from the tablet. I sincerely hope that there is no possible way that my tablet is hacked, but just in case, you have been warned. And if this somehow gets back to Zooks (again, not sure if that is the correct spelling) Please Please PLEASE delete my account from your website. Not happy >:(

A very long rambling for a very short point

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.

She calls me "MaMa"

There are always those little things as a parent that just hit you right to your core. They seem to come out of nowhere, but you remember them long after they are gone and long after the newness wears off. Sometimes the moments make you want to jump up and run around the room, screaming with joy, other times you are so rocked, all you can do is cry with gratitude and love.

In the past 48 hours, I have had a few of those experiences, and I would like to share:

Saturday. Saturday was Kotah's 1st birthday. There was a time I truly did not think we would make it to this point. I was so humbled when I awoke that morning. All I could think of was that here was my little baby, growing and developing and progressing, all thanks to God's miraculous power. She has not been doing so hot. It looks as if she may need some ear tubes. However, when that happens, there are a lot of doctors wanting to do small exams and procedures all at the same time while she is under. They really don't like the idea of giving her any more times under anesthesia than is absolutely necessary, so it may turn out much bigger than tubes. And it could be that we are getting close to the peak with her. The more that I research the genetic possible mutations, the more I am sure of and dreading the diagnosis. It makes me all the more grateful for every little instance, every little miracle, every smile, every laugh.
While we were driving to and fro, we listened to Scripture scouts, the episode where Christ comes. Katie started crying at the song where Christ sings. She asked "who is singing? I told her it was Jesus and she started crying and crying all the while saying "These are my happy tears. I feel so happy. When I am so happy, my happy tears come." She is so open to the spirit. I cried along with her. Ty laughed. In a very loving sort of way. Until I tried to reach back and hold Katie's hand while driving as well. The laughs quickly disappeared.

Yesterday I was having a pretty bad day. It was the feeling of the world has come to an end, I am a horrible mother, I hate me kind of day. (no sleep definitely does not help the feelings) Ty was trying to let me get it all out and Katie happened to walk by and hear me say something along the lines of how I felt that I was failing as a mom. She burst into tears and ran into my arms and said "oh mommy, don't say that! You are my best mommy ever. You do everything for me. You cook and clean and play with me. Please don't cry mommy! I love you!" So of course, I cried harder. But as she snuggled with me and we wiped each others tears away, I got the strength I needed to get past that hard moment, all in my daughters love for me.

Today while at work, I was feeding some baby puffs to Kotah and some other toddlers when she looked at me and said "Mama!" I was shocked speechless. Then she proceeded to walk 5 steps from the couch on her own to me while saying "Mama, Mama." For a girl that has always called me DaDa this was amazing. I squealed. I hugged her and begged her to say it again. So she obliged. What a fun day it has been. Just now, as she got up for a night feeding, she tiredly called out "Mama?" The feeling in my heart when I hear her call for me is almost indescribable. It hits something deep. Something in my very nature. Maybe it is the same nature that drives my little Kotah to rock her baby doll back and forth and pat her back. The same depth as when Katie runs to Kotah when she cries. Hearing my baby call for me by the most precious and prized name awakens such a love, such a pride. The fact that she is here with us, despite all odds and that she is able to speak makes it so much more. That she would choose to call for me is more precious than money can buy.

Its moments like these that make me want to try all the more to be the best I can for my daughters. To love them and serve and teach them. They really are my reminders of God and how great and wonderful He is to me. I think of how much I love these two little handfuls, uh bundles- I meant bundles of joy ;) and then I think that God loves me even more than that, and I feel so overcome. How blessed each of us is to be a child of God!

Third times the charm.

There is an expression "If it was a snake, it would have bit me." There is a snake in my life that has been chomping on my nose for the past month and a half. It is the fact that I have known that going back to work was not going to work out. But I kept at it, because I believed it was the right decision. I was getting stir crazy (let's be honest, without a car, there is not much you can do in under 20 weather) and we needed the money (I thought) and the girls needed some socialization (because what 3 year olds day is complete without a few good fights and arguments over toys?) .

However, the snake took a good latch and hung on. I started to notice it when Katie became a little more emotional. I noticed it when I had to take Kotah to night clinics because I couldn't leave work. It was there when I was so spent that we had freezer meals a week straight and poor Ty had to pick something up from the store. And when my girls sat and cried in front of me, but I couldn't pick them up because I was wrist deep in some other kids poop out. When Katie started to behave less and less like the angel I know she is and more and more like the.... well, the bratty, attention starved Day care kids. 

I knew at the beginning of the month. But I kept putting off telling my boss. At first it was because her dad had died and I knew she needed a break. Then it was another family trial and I didn't want to burden her anymore. But it all honesty, it was because I was greedy. After hardly even surviving, I was enjoying having a little bit of leeway in finances. Enough to enjoy going out to eat, probably more than we should have. Kotah's social security started coming so the medical financial burden was gone. We could actually buy our own food. However that was do largely to the fact that because of the social security check, food stamps was discontinued. But I was, in my mind, living the high life! More than just the bare necessities. And meat! Oh heavenly meat! Not having to worry about a bill or buying a package of diapers. 

But this new "lifestyle" came with a price tag. The once happy and relaxed atmosphere that we tried to live by in our house was gone. Replaced by stress and anxiety. Packing everyday, getting home a night with barely any energy left to microwave a meal for Katie. The laundry and dishes stacked up. I haven't been able to bake in who knows how long. And if you know me, you know that I LOVE to make cookies and homemade bread and cookies and well, yeah, cookies. The toyroom was collecting dust! And the stress of getting Kotah into see a doctor was unreal. It was either night clinics, or the urgent care, or the er.
Today was the breaking point. The point where I realized that there was never going to be a good day to tell my boss. The point where I realized that this had to end. It started when three of the toddlers had pink eye. I quarantined Katie and Kotah to a separate room. No way in heck. But this is what life is a daycare. Don't really call it pink eye. Or rsv. Or strep. "It's just a cold." That is what the parents say, so they can still leave their kid and go to work. That is what the providers say so that the "hyper-sensitive" parents don't freak out and pull out their kids, thus pulling down profits. But with how medically complex Kotah is, I was protective. And then I thought, what if she gets something here that she CAN'T handle? No quart of ice cream or lunch at Golden Corral is worth that. So today I gave my notice (for the third time) to my boss. I love kids. But I am not good at multiple personalities. I can't be a mom and a day care provider. I promised to help train the new person and to come in occasionally, but I can't be the go-to person. I am the go-to for my children.
As I look at "tightening the belt" once more, I am not really afraid. We made it before. Ty is almost done with school. And heck, I am looking forward to getting cabin fever. I may just have to dust off the craft boxes and games. Or maybe we'll bundle up and go on a walk to the corner and then run back for breathing treatments and oxygen therapy to combat the air quality. Whatever we do, having two open arms to hold my girls in is the most important. I don't get a re-do on this time I have with them now. 

Another update

Ah the past two weeks have flown by, yet felt like a lifetime. In all I think we were at the er 2x and the doctors office 5x. Kotah had her nose suctioned so many times I stopped counting. Her o2 sats were low and even with oxygen bumped up triple during the day, it still took a bit for her to get better. On Saturday we were in the er again for monitoring because her resting heart rate was at 190. The last time this happened she had those 4 mini heart attacks. The doc said that we are doing everything right. Even though it seems so hard and hopeless, we are doing everything right to keep her alive and that she wouldn't be alive if we did things differently. As hard as that was to hear, it also helps. It helps to know we are doing something right.

There is a doctor out in Chicago that basically wrote the book on the gene mutation that has been discussed before. After some emails with the nurses in the clinic, we are looking at two series of blood testing. We are not sure if it will be covered by insurance and it costs a lot. Thank goodness for tax season!

Now for the fun cutesier stuff:

Katie is loving sunbeams! I think her favorite part is singing time. She comes home singing the songs and asking me to sing with her. She is catching on to sooo much.
She loves being a big sister and likes to help Kotah walk around the room. I.E. holding her under the arms and walking with her.
She got a bike for Christmas and rides it around and around and around the kitchen table. We have taken her outside with it once. She did great!
She loves to pretend that she is fluent in Spanish. We introduce new words to her a bit at a time but I am already thinking ahead to Kindergarten and hoping to find a program that does Spanish immersion.
The other day she stuck a MnM up her nose (I have no clue why) and after a few minutes of calming and nose blowing, it melted enough that it came out. Needless to say, she has not tried that since.
She loves to "surprise" me by cleaning up messes. But she still wants help. So I close my eyes and help her clean up and then get to be surprised when I open them and the room is clean :)

Kotah is almost walking. She keeps trying to stand up on her own and will walk from Ty to me.
 She tries to mimic what we say and sometimes it is so close I am caught off guard. She can say and understand : HI, Please, Thank you, This?, That?, UP!!!, Ada -Daddy for Ty, Dada- what she calls me, Eat, and Boobs. On Sunday we were sitting in a combined meeting and she started pounding on me yelling "Dada, BOOBS!"
 She is a tough little chick and will blow over anything or anyone that gets in her way. Except coming down stairs. She just sits and the top and screams. Three small elongated stairs. We work on going down them everyday. She can go down 7 steep short stairs, but not 3.
She had to have two antibiotic shots today to try to get rid of an ear infection that the oral antibiotics are not touching. They opted to do this as the only other medicine to give her was something she is allergic to. After 5 minutes, her legs had swollen at least 2 inches and had a rash and hives. Of course it would. Sigh. Such a trouper though. She hardly cried.
She is my snuggle bug. She will cling onto me when I pick her up and sometimes she will pat my back. I found her playing with a baby doll the other day, rocking it and patting its back and giving it kisses. So cute!


Our normal has Ty and I pretty worn out. But the precious moments with our girls make it all worth it.

This is a dump post. eta: Trigger

(edited to add trigger to title. this really is a dump post with trigger worries)
This blog will probably be a little more personal than I am used to, but after melting down while driving today I need to just let my feelings out.
I have heard this song before and have been touched, but not ever like the way it got me today. Ty turned to me and said "wow, you really are a mess" as he tenderly wiped the tears from my cheeks so I could keep my hands on the wheel. Notice: I did say melt down, not break down. Melt is when your soul seeps out your eyes. Break is when it comes out your mouth and whole body through various sobs and shakes. Melt-keep driving. Break-pull over! (We have been discussing for the past few weeks how much of an emotional wreck I am right now. A lot of it is due to feeling so overwhelmingly blessed and part of it is due to not really dealing with all my feelings for the past almost 9 months.)
I feel so helpless. And many days, hopeless.
I feel guilty. She is mostly healthy and still here, yet I worry.
Worry. Maybe I should have put that I need to let all my worries out, not so much feelings. I worry a lot. I worry that I'll miss something when she pulls her monitor off and I don't wake her to go through the struggle of putting it back on, but instead just let her sleep. I worry that if I don't watch her constantly she could pass out and not come back cuz I'm not there to help her. I worry that our time with her is numbered. I worry that the high white blood count could mean cancer (thanks a lot stupid internet search) and that will be a whole nother ball game. I worry that the lack of time I spend with Katie will turn her into a sister who hates her younger sibling and takes it out on her.
I was cuddling with Kotah yesterday and had an overwhelming fear of what if I don't get to do this much longer. I try so hard to ignore that fear because it can be so very debilitating, but it is a constant companion when she is struggling. When she is healthy, I almost forget how hard it can be and then when something pops up, it hits hard. I am so scared to even think about, to even admit that one day... can't type it.
I feel stupid for my fears.
I feel so angry when anything wakes up Kotah after getting her to sleep. Even if it's Katie. Especially if it is an outside influence. It is easier to mask my fears with anger and place that anger where it really doesn't belong. Not the healthiest thing and I do try to reroute that thinking pattern, but at least I know its there.
I am overprotective of Kotah. I am trying to curb that one because it will harm her more in the long run then a bump.
I sometimes forget to pray in the moment and put more expectations on the nurses and doctors.
I fear another hospital stay. The new years starts which means filling the insurance quotas up again. I feel very stupid for thinking like that because there is nothing I wouldn't do for her health, but it is a concern. Also, watching her be hooked up to machines and ivs when she has become such an active little girl is so hard.
I kick myself in the butt numerous times with guilt for not speaking up on things from past visits.
I feel like a monster for letting them cath/or try to cath her. I know its a medical procedure and I know it is necessary and I can't really explain to her or get her to pee in a cup, but I feel like a horrible horrible mother.
I feel so out of control. I love control. I like having every thing work the way I think it should. Everything has a place and should be kept in it except for a time allotted for its use. The more crazy things get, the more of a control freak I become. I have a hard time letting things go. I am getting better and I have to remind myself a lot to let it go, but my natural man is a control freak.




I do know that we have been blessed with so many miracles. God has placed, from day one, the right people at the right times in our path to help and uplift us. From something as small as a text when I am feeling down, to a needed monitor being tucked away at a friends house, to rides to appointments, to money to be able to pay off outstanding medical debt, we have been truly and richly blessed.
My testimony has grown. I know that God knows exactly who I am. He is aware of every little instance. He walks with me in every moment, even when I forget to ask for Him. He loves me. He cares about me, about my children, about my fears, about my needs and He supplys. He comforts me through the spirits calming influence. Many days He is so close I can feel his arms around me, holding me up.
This song is how I feel in my darkest moments, but the light so quickly comes. I know that Kotah and me and my family are never left alone.