What This Means (3 months later)

A little over 3 months ago I did a blog post titled “What This Means (as far as I know)” and in it I tried my best to describe what was going on with SJ’s newly diagnosed hearing loss. At the time I admitted to feeling that I was underqualified to explain or understand what was really happening with her. I still feel that way, but we have made some progress in treatment, diagnosis, and overall adjustment. So here is an update of the 10 questions I had previously outlined.

1. What type of hearing loss does SJ have?
Sensorineural, meaning inner ear.

2. How did this happen?
We still don’t know. We may never know, but I have started asking her doctors about genetic testing. I have recently met multiple parents whose children were deaf as a result of a hereditary hearing loss called Connexin 26. I could be totally wrong in my attempts to search for answers, but Cx26  is is the most common cause of congenital sensorineural hearing loss and some of the stories I have heard that involve this type of hearing loss sound very similar to SJ’s. I won’t go into all the details, but I’ve included some links for those interested.

3. Was she born with it? We still don’t know for sure. My latest theory is that she was born with some hearing loss, but that it wasn’t so severe. That may be why she had definite signs of hearing before her 2nd birthday and has progressively gotten worse. It’s a shot in the dark, but it’s all I’ve got for now.

4.  Could she continue to loose her hearing?
We don’t know, but long story short it won’t matter if she does because her hearing loss is so severe.

5. Is SJ deaf?
YES. 3 months ago my answer was that she is hard of hearing, but since then I have learned from her specialists that SJ is in fact deaf. This doesn’t mean she has no hearing at all, but it means that she has a profound hearing loss.

6. Will she learn sign language or talk?
Right now SJ is unable to hear speech and therefor she can’t talk. We have confidence that with the right equipment she will be able to and we are working on figuring out what is best for our family with great urgency. As it stands, SJ only knows sign language and even that is very minimal because it’s new to her and all of us. For now though, this is how she can communicate and it is her first language.

7. What can she hear?
Someone at the deaf school showed me this video and it gives a good illustration of hearing loss. SJ is severe to profound, so even the final setting in the video is better than what she can hear.

8. What about cochlear implant? 
It’s amazing how much can change in 4 months. I was originally hoping we would never have to face the decision for SJ to have surgery. At our first appointment with the audiologist they didn’t even want to discuss the cochlear implant, which I think is just standard protocol- start with hearing aids then take it from there. However, now her entire medical team is recommending the surgery and we are currently in the process of looking at models, choosing a surgeon, and deciding on when to do it. There is a lot more to discuss about this huge life altering decision, but that’s basically where we are at right now.

9. What happens next? 
Tomorrow SJ will be sedated and tested for the ABR, MRI, and CTscan. This will be her second ABR which is the hearing test and that will either confirm what we already knew about her hearing loss or potentially see if it has worsened. The MRI will check any brain or nerve damage, which none of her team of experts are worried about because her vision, balance, and all of her motor skills are great. The cat scan will look at the bone structure and give a better picture of what is happening in the inner ear. The results will be in after about 2 weeks.

10.  What do we need?
I’ve made a few connections from the deaf school, which is so wonderful, but if you or someone you are close to is deaf, or has a cochlear implant then I would love to hear from you. I am always wanting to learn more and people with personal experience are one of my greatest resources.

You can reach me through my facebook page or email natobusch at yahoo (hopefully, I typed that in way that is spam proof).

Of course we will take all the pray we can get too. Prayers that SJ will be safe during the sedation and that the doctors will get all of the information that they need during these tests. Prayers for guidance on which hospital to use for the surgery if she gets it and even what this means as far as where and when our family will move!

Thank you all for being so loving and supportive. We will of course keep you posted every step of the way. 

By |2015-05-14T23:15:40+00:00August 16, 2012|Uncategorized|1 Comment

His First Day


What a milestone! Z started school yesterday. In Texas, or at least where I lived, his birthday is just after the cut off and he was scheduled to start kindergarten next year, but in Kentucky he is supposed to start this year. Enrolling my child in school for the next 13 years was a decision I didn’t want to feel rushed into or have Z unprepared for. So we decided to hold him back and stick with our original schedule, which I was told a lot parents do and it’s perfectly acceptable.

Z has never been to any type of daycare or nursery school. His first 4 years were spent at home with me just learning about life in a relaxed environment. That is why I am taking this Pre-k business very seriously. I treated yesterday as the monumental day he began his long journey of formal education. Maybe that is why I cried just a tiny little bit on the way there.

On Z’s first day of school I woke up earlier than I ever do, ironed his clothes, shoveled down some pancakes, fretted over whether I was sending him with enough food for lunch, and frantically looked for his back pack wondering why I hadn’t done all of this the day before. J and I managed to get both kids out the door and with shortness of breath I began snapping pictures rapidly. I threw any of my professional photographic training out the window. I was in the candid, crazy mom mode. The mom that kept the camera around her neck all morning and literally followed her kids into the school taking pictures all along the way.  

There was a moment though that the craziness subsided. It happened when J and I prayed for Z. That was the moment that I stopped panicking about details and started allowing reality to sink in. I remember days I thought I wasn’t going to survive the terrible two’s, the nap time refusal, or the multiple attempts at potty training. Somehow I see this day as a finish line for that stage in life, the PRE school stage. Like I can look back and say we did it. It’s the beginning yes, but it is also the conclusion of something else. He is no longer a toddler, a baby, or even a preschooler really. He is a smart, compassionate,  happy little boy. A little boy who marched right up to school on his first day and went and sat down with his classmates ready for this new chapter.

When I picked him up that afternoon they said he did a great job. Z showed me a map in the hallway on the way out. He loves geography. He held my hand as we headed to the car and I think he walked a little taller that day. I think I did too. 

By |2015-05-14T23:15:40+00:00August 15, 2012|Uncategorized|1 Comment

YUCK!

I was in for a bit of a surprise today when I got an email saying that my automatic renewal for my messy mom website did not go through. Back in June my debit card was compromised and the bank had to issue me a new one. That is why the one on file did not work for the annual domain payment. I knew this wasn’t catastrophic,  I just had to make sure they had my new card info and get my website back up and running. In the meantime I checked out messymom.com and was greeted by a RAUNCHY photo and links to some horrifically offensive websites. Welcome to Messy Mom it said. “Free p*rn at messy mom.com”. The only reason I am censoring the word for dirty photos is because I don’t want to trigger the wrong kind of traffic from search engines, especially after this little incident. To quote Strong Sad from an ancient home star runner episode “I feel like I need a chemical shower after seeing that! Do we have an emergency eyewash station?” So if you were one of the dozens of viewers that probably did catch that splash page before I had it fixed then I apologize and in it’s place I have a couple sweet innocent photos taken earlier this week. 

 Z and J sharing a shake at Twisted Root and SJ super relaxed with me across the table. 

I’m not sure when I will be able to pop in for another update.  Starting tomorrow our week is P-A-C–K-E-D. Do you want to hear our schedule? I know, it’s all very intriguing. Tomorrow is the big day for my brother in law and his fiance’. Jeremy will be officiating the wedding and I am doing the photography. Then we will be turning around to make the long haul back to Kentucky just in time for SJ’s therapy on Monday. Tuesday is a really exciting day because Z starts Pre-K and I will have all kinds of details and pictures for that along with updates about SJ’s new deaf and oral school which she will also go to on Tuesday. Thursday is my next prenatal check up which are now scheduled more frequently since I am 31 weeks! Then finally, on Friday we have a really big appointment for SJ where she will be under anesthesia for the first time and they will be testing her for ABR, cat scan, and MRI which will take nearly all day. So, there is a lot going on which is really nothing new. Anyway, it’s good to have my web presence back and all of that nasty filth off of my page. The REAL messy mom lives on!

By |2015-05-14T23:15:40+00:00August 9, 2012|Uncategorized|1 Comment

CFA and My Two Cen

I know everyone is sick of hearing about Chic-Fil-A and it’s old news by now, but in the spirit of freedom I wanted to just share my take on it. I have been a patron of Chic-Fil-A for a long time and haven’t been afraid to blog about it, so why stop now? 

First of all, let me explain why this is an issue that affects everyone and why it is in fact a big deal that is worthy of waiting in line 3 hours just for a chicken sandwich. It mainly started when the owner of Chic-Fil-A made a statement to the Baptist Press involving his views on the Biblical principals of marriage, this not only included marriage between a man a woman, but also marriage that is a lifelong monogamous relationship. Apparently his beliefs went viral and the media began to really blow things up. Certain politicians were working towards banning the establishment in their cities (Boston and Chicago). This a problem. Governmental ramifications disputing free speech is completely unconstitutional, and you may or may not agree with the owner of Chic-Fil-A, but if you were ostracized for saying how you feel about an issue then you probably would see this as a matter worth fighting for. Hunger Games anyone? I remember several years ago a similar issue irrupted with the Dixie Chicks. In the end they posed nude on the cover of Entertainment Weekly covered with words about the freedom of speech controversy and the next thing you know it was history. I don’t think that the nude idea would work out so well for the Chic-Fil-A owner, but I’m hoping that people will look at the public statement that was posted by Chic-Fil-A representatives and quit labeling them and other Christians as hateful. 

Lastly, I just want to address this little image that has been circulating on the internet. I’ve read some very hurtful comments about the people that chose to “waste” hours of their day on this cause and this is my response.
First of all there are millions of christians that are serving at food banks and homeless shelters all over the world. I could name off a hundred individuals that I know personally and I’ve read about and support countless other ministries. The difference is they are not all lining up at one place for one day only. In fact the Bible specifically address this issue in Matthew 6:3, by stating that when you give to the needy you should not let your left hand know what your left hand is doing. In other words we are to give and serve quietly and with humility. If everyone lined up on the same day (as they did August 1st) to serve at a soup kitchen it might be newsworthy sure, but it would be stupid and pointless. So that is why I think this whole statement might be clever and hopefully inspires people to do more, but other than that it’s comparing apples and oranges and mostly just another attempt to negate the stand these people were making about the freedom of religion and speech. I can just about guarantee you that if you added up all of the food donations from  the lovely people that posted the above photo it would be no where near the amount of food that Chic Fil A has donated throughout the years. They are one of the most benevolent companies you will have the pleasure of supporting. I’ve seen it first hand every time they have donated sandwiches to our church’s ministry to the homeless. 
Sorry to rant. I just think freedom of speech and religion is something worth fighting for. My children may not remember this historic event, but they will be able to reap the benefits of it.  
By |2015-05-14T23:15:40+00:00August 7, 2012|Uncategorized|3 Comments

SJ’s Signs Part 2

We leave for Texas in a couple weeks and it will be our first visit back to our home state since SJ’s diagnosis. Even though she doesn’t sign a ton, I want our Texas family and friends to be able to know what she is saying when she does. I knew I needed to make another signing video of the signs that she uses. I wasn’t planning on doing it when I was all hot, sweaty, and had not showered or done my make up, but when SJ hopped up on my lap while I was at the computer it seemed like as good a time as any. In the video it might seem like I am apprehensive about traveling to Texas or the wedding. This is not the case, it was just that I was trying to wing it and it was my ASL vocabulary that I was apprehensive about sooo… anyway enough disclaimers. Here is the second installment of SJ’s signs. 

She understands many other signs and she will mimic a lot, but those are some of the main ones that she uses on her own along with; no, milk, more, please, potty, eat, help, thank you, all done, and hurt, which are all included on the first video  except for milk and hurt. 
Milk is pretty easy, just squeeze your fist to represent milking a cow. 
Hurt is just like pointing 2 fingers together wherever the pain is.
I heard that some people had a hard time viewing the first video so I have posted them on youtube in case that helps
http://www.youtube.com/watch?v=3ze_5HhJMss&feature=youtu.be
http://www.youtube.com/watch?v=EyeXMkgRSpw
Let me know if you have any questions. Thanks! 
By |2023-06-12T06:31:12+00:00July 25, 2012|ASL, Uncategorized|4 Comments

When Lightning Strikes

We were excited about the storm that blew through earlier this week. Water is even more appreciated when you have a garden,
Z and his cousin with fresh picked zucchinis from our garden. 

 but things got a little scary when lightning struck the property and we heard  an extremely loud POP!!! We immediately lost all electricity. Everyone is okay, but the tv, furnace, and modem were all permanently fried. So, that has been no fun and it will be a while to have everything corrected/replaced. You can remember my parents in your prayers.

Everything else has been going well. I recently had blood work and a glucose test for this current pregnancy and the results showed me to be in perfect health! In the midst of all we have going on right now, I am grateful for this report.

My friend and I at Cornerstone. She is also due on October 10th.

Also, thanks to this baby we found a pediatrician. All the places I have called have shut me down saying that they are only open to newborns and are taking no new patients otherwise, but I am about to have a newborn which was the loop hole that this particular Doctor needed to sign up all three of my children. SJ and Z will have their first appointment next month. I was never satisfied with the first doctor we saw when we moved here and having someone that works well with our family will be a huge load off.

In other family news I found a preschool for Z. We didn’t feel ready to enroll him into Kindergarten even though in Kentucky he is the right age. He’ll start next month and will be going all day Tuesdays-Thursdays.

 Z signing I love You (this is the screen saver on my phone)
Honestly, I am still in disbelieve that my little guy is going to be starting school. Granted it is Preschool, but it is a private christian school, NOT day care. They will be working on all the things he needs to be prepared for elementary schools and from what I understand these days that includes a lot! I am actually REALLY excited about this next major milestone for our son. He’s excited too. He’s got his Diego back pack and a brand new Spiderman lunch box. We’ll see how he feels after his first week.  

By |2015-05-14T23:15:40+00:00July 22, 2012|Uncategorized|1 Comment

Processing Deafness

Just to let everyone know right up front, we are doing just fine. SJ is great, we are still learning to sign and speech therapy is underway. I just wanted to be transparent about the reality of all the complicated aspects of this process.

The moment I knew there was potential hearing loss for SJ I started researching. I’ve tried to learn all about the deaf community through videos, websites, reading material, and talking to anyone I could find that was involved in the world of hearing loss. I learned that they have their own culture, defined as a group of people that share a language, values, rules for behavior, and traditions. I read a lot of fascinating and encouraging things that made me want to delve deeper into this culture, but some of the articles I read made me feel like, as a hearing person, I was an unwanted trespasser. I didn’t understand why some deaf communities seemed so exclusive and defensive. Then I learned about the oppression that started taking place in the 1800’s when deaf people were forced to learn ways of oral communication and they had to fight to preserve their language, which was almost completely wiped away by the idea that deafness was a burden that needed to be removed from society. At this time it was also believed that no deaf person should intermarry in order to try to eradicate the problem. I also learned how up until recently, including in my mothers generation, many deaf people have been misdiagnosed as mentally challenged and therefor isolated from the opportunity to communicate or become social. It’s no wonder some deaf people feel like they have to fight against the hearing world to preserve their identity.

When I was told that my daughter had severe to profound hearing loss, I didn’t know where that placed her on the hearing loss spectrum. I tried to look up information, but my results were inconclusive therefor I announced to the world that SJ was hard of hearing and not deaf. Since then her team of experts, doctors, therapists etc. have said otherwise. SJ is deaf and I just didn’t know what to call it.

I read one article that said;
 In hearing culture, the terms used to describe deaf people have to do with their hearing loss. The term “hard of hearing” is better than “deaf.” Hard of Hearing people are generally regarded as being easier to communicate with and fit in better with hearing people. In Deaf culture, though, the terms are quite the opposite. There is one label for people who are part of Deaf culture…Deaf. 

Not to be defensive, but I did not use the term hard of hearing because I thought it was better. I am not ashamed to have a deaf daughter, misinformed maybe, but the only reason I didn’t call SJ deaf is because no one told me! I was afraid to offend the deaf community. I feared that by labeling SJ deaf we could potentially get kicked out of a party that we were never actually invited to. When you learn about deaf culture you learn about deaf pride, which is a beautiful thing, but it can be intimidating when it’s new to you. 

As a mother of a deaf two year old I am responsible for the decisions in her life at this time. The more I have learned about this whole hearing loss process the more I feel like I am in-between two worlds. I am trying VERY hard to embrace ASL, but it never fails that I am breaking rules about sign names, and grammar, and the idea that maybe the cochlear implant is not from the devil. 

The ironic thing is, I’ve always wanted to adopt. For me personally my heart has ached for the many minority babies in America that need a home. I have always felt like we would some day be a biracial family, I have even referenced this in previous blog posts. I never imagined though that I would have a biological child that was a minority and who could identify with a culture and a history completely different than my own. It’s one thing to adopt a child of another ethnicity, but wouldn’t it be strange if you a birthed a baby and the Doctor said “It’s a boy… and he’s Hungarian! Now here is a book of rules on Hungarian culture and this is how you need to raise him.” That’s kind of what it feels like. Different, but I don’t know what else to compare it to.

Now I could write another 5 paragraphs of disclaimers because I worry that all of this could be taken the wrong way, but instead let me just end with the true nature of my heart. Community and culture are vital to our makeup, but so is individuality. God has given me the gift of motherhood, and as long as he continues to bless me with children whether they be biological, adopted, black, white, deaf, or Hungarian my husband and I will joyful take up the challenge to raise them to be men and women of honor and integrity. There are good days and bad days, but this truth is deeply rooted in my heart.

The Cows Are Back

I wasn’t sure if we were going to be able to participate in Chic Fil A’s cow appreciation day this year because we just got back in town. For those who are not familiar with this holiday, it happens every July all over the nation. You dress like a cow, you get a free meal. No strings attached, whatever you want. For our family that’s $15.00 worth of food and so worth the chance to look foolish and be silly together. So in the end I decided to go for it and found a pack of craft foam paper for $4 and I made masks out of them. Granted the masks turned out looking a little creepy, but they were unique and the kids had fun. 
Other than that we just used a conglomeration of what we had gathered over the past 3 years. Z fit into his costume for the 3rd time! Next year it will have to be passed on to SJ and my mom can make Z a new one. We accessorized with items from various CFA kids meals,  and for the record I am patting myself on the back for finding all of this stuff.
 
I hope to be able to keep this tradition going for a while. Here is a little peek at all of the cow day fun that we’ve had past and present. 
2010
2011 
 2012

 Z signing “cow”

SJ showing her cow appreciation with a great big hug! 

By |2015-05-14T23:15:40+00:00July 16, 2012|Uncategorized|2 Comments

Mommy’s Girl

No matter how big our family gets I know I will always have a special connection with each one of my children individually. With Z, he was my first born and he got two and a half years of undivided attention, and tons of photos to prove it. This next baby will be the third born just like me, so I already feel a camaraderie in that way, and then of course SJ is my only girl and you can’t compete with that. 

SJ and I got to spend a lot of one on one time together this past week and I really enjoyed it. While at Cornerstone we worked on a handful of art projects together including this sculpture and painting. 
I tried to get a snapshot of us hanging out,  
but I think it mainly showcases how hot and scuzzy we were.
J took this picture and I didn’t even know about it until yesterday. That’s us snuggling up sound asleep in the tent.
J took some more pictures of us at the train station including this one of us reading magazines on a bench
and here are a few more of us playing around on the bike racks. 
The truth is we’ve hit a few rough patches here lately involving SJ’s hearing loss. I’ll leave details for later, but for now let’s just say that having a special needs child takes a lot more than I ever expected. However, these challenges have done nothing but strengthen our relationship. I’m sure someday she won’t want to spend all of her time with her dear old mom and that’s a good thing, but for now I just want to soak it all in. Maybe someday when she’s 29 she’ll want to go to New York city with me. We’ll see.  

By |2015-05-14T23:15:40+00:00July 12, 2012|Uncategorized|1 Comment

A Brief Photo Recap

Everything has been such a whirlwind of busyness since I returned from NYC. First of all, I mentioned that my best friend M surprised me by flying in from Texas and it was a one way ticket. Not because she is moving to Kentucky, although that would be cool. It worked out that she was able to ride with us to Illinois for the Cornerstone music festival and then rode back to Texas with the church that we were camping with (our Texas church). 
Z took the top photo of us in Louisville and below is a pic of M getting chauffeured around by SJ in the golf cart at Cornerstone.
Z didn’t come to Cornerstone with us because he had a fun filled week with his grandparents. It was bitter sweet not having him there, but I think SJ reveled in the opportunity to be the only child. 

 We had lots of great mommy daughter time while we were in Illinois. I will never forget this bonding experience and look forward to many more with my precious daughter.

 On the way home we spent a day in Chicago because we had never seen America’s 3rd largest city. Here is a photo of J and SJ in Union Terminal.

When we did finally arrive back in Kentucky we found that our garden had taken over and we had lots of beautiful fresh veggies to harvest. Time to get cooking!

 

By |2015-05-14T23:15:40+00:00July 10, 2012|Uncategorized|1 Comment
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