Kieran's Hearing Update

 The little guy is getting hearing aides tomorrow.  To make a looong story short we basically got to FM, took him to his bi-yearly hearing check-up and our new audiologists red flags were blazing red after looking at his results from SIX MONTHS ago when we were brushed off that his tests must have been "off" because of his cold.  To say that we are frustrated is really an understatement.  I don't even want to talk about what this could mean for him because it makes me so angry....so I just won't.  I'll save my energy on focusing on what we can do now.

 We had a repeat test called an ABR a couple of weeks ago to tell us more definitively what his loss was.  The last one he had was at six months when he was diagnosed with a unilateral sensory hearing loss in his right ear.  Basically he couldn't hear one pitch at normal conversation levels in one ear.  We were told he would develop normal language and his left ear would compensate. We were also told that it is extremely rare for the loss to progress and would probably not go to the other ear.  Now 1.5 years later he has a bilateral loss (meaning both ears) with each ear struggling to hear two different pitches at that conversation level.  On top of that they diagnosed him with audio neuropathy, which is a whole different story.

 We are so thankful that we have moved to Moorhead right now.  Our old school district would not have been on top of things like this one is.  I casually mentioned to the preschool screeners for Svea that our son had a hearing loss and less than a week later they were at our house to start the evaluation process.  Kieran will be receiving speech and developmental therapy twice a week. 

 So the whole auditory neuropathy.  We found out today that he is the ONLY child birth to 12th grade that has this in the district. This is a town of 40,000 people and it was really a blow.  It's hard to diagnose so I just keep praying he either has a very mild case of it or it's a wrong diagnosis.  Basically what it is is Kieran hears static on top of his hearing he does have.  Sometimes the static is lighter than other times.  If you google a simulation you can hear what he hears.  The brain and the nerve don't communicate in the right way. Hearing aides DO NOT help for this and my head is about ready to explode from explaining it.  Hearing aides may help him, but they may also just amplify that static.  I've been getting frustrated with people who say, "Well now it'll be better.  He is getting hearing aides."  Or, maybe it will get better".  It's not getting better.  It's nerve damage and it's permanent. He was born with this genetically more than likely and all we can do is hope and pray it does not progress further..the hearing loss or the auditory neuropathy.

So, today is the last day that Kieran will be hearing aide free for the rest of his life.  He will never again not have them and I don't know why, but that feels so strange to me or makes me slightly sad in a way even though there is a 50/50 chance they will help him tremendously.  I sure hope so:)  Here is what we pray for Kieran.....that he can develop normal oral language and be able to pronounce words correctly.  He is so bright, but if he can't speak correctly people generally interpret that as lower intelligence.  That he won't be picked on or teased.  That he will be safe and will listen and learn from us when we teach him about car and other safety and the need to use his eyesight more instead of relying on his hearing.  We pray that he will be an advocate for himself and if he doesn't hear someone that he asks for clarification.  We pray that he will be happy and that this won't cause him major frustration.

 

Overall, Kieran is going to be ok.  He has a hearing loss, but he's healthy and happy.  We are SO thankful for that.  This is his life journey and we just hope to do a good job of being there for him and while he's young making the right decisions for him.  We will start sign language with him in case his speech doesn't take off.  If it doesn't he has the potential to just drop the language and then he's going to need a back-up way of communicating.  Our current audiologist said he would have aided him at six months.  That means we should have been hitting sign language harder than we did when he was a baby and think of how much further along he may have been if he had been.  ARghghhghg!!!!  Ok, see there I go getting so angry.  If anyone struggles with hearing loss and you live in St. Cloud area let me know.  I'll tell you where NOT to go:(

 

We will update on how he does with the aides.  We think we may be in for a battle, but are trying to remain hopeful for a smooth transition.

aHHHHHHHHHHHHHHHHHHHHHHH!

I used to see a school counselor after my mom and I moved across the state, when I was 10. It was traumatic for me, at the time, so my mom sent me. Best thing she could have ever done. I've never left! Ha! My counselor always told me that when I was upset and angry that it was ok to feel that way. She also said to find a "safe" way to get your anger out. Well, some people/children cry, clean, work-out, or color, while some people need to yell. She said her own son was a screamer and she'd send him outside on the back porch and let him have at it when he was really worked up and upset.

Well I'm not 10 and I have a lot of close neighbors so I'm getting out my screaming here. AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

Not quite the same....but I guess it'll have to do......damn, I wish I was an irrational child right now!

I Need a Customized Friend

I labeled this post under "rant", but I don't want it to come out like I'm angry right now. This is more of a desperate search to find someone out in the big world like me. Although I have made some great friends here, my title is about needing a friend who gets what it's like to have some sometimes crazy and hilarious expectations from people.

Becoming a pastor's wife can be difficult, but there are times when it is very rewarding. I love being around people. I love laughing and talking and honestly I feel like I can relate or at least carry on a fun conversation with just about anyone. I am an extrovert so being a PW gives me that fulfillment. Another plus is the fact that my husband and I can have a relationship with each other and with God. That was always my #1 priority when trying to find a mate. I wanted someone that I could talk with about our faith, life, God, etc. I also love hearing my husband preach,and watching him nurture other people. Most importantly we have made some amazing friends along the way that we otherwise wouldn't have made.

Unfortunately, I'm not focusing on the "good" things about being a pastor's wife today because lately I've been struggling to feel like I'm normal in the fact that so many things bother me about being a PW. I know it's ok to struggle with this, but living in a small town you can't really go to anyone in that town to confess your frustrations...it'll likely get back to people that woops, you aren't this perfect little PW that they've been expecting you to be. Right now I'm focusing on finding an outlet so that the negatives of being a PW don't outweigh the positives. I'm seeking, you could say, help!

So, last year I joined a PW forum. That's been a good experience. I've befriended a super cool Pentecostal woman I still keep in contact with. I've also met some really nice Missouri Synod wives. I'm frustrated though because I have yet to meet a younger PW, of the same denomination, that struggles with the same types of things. So for now, the forum is ok. I just don't feel "on the same level" as many of the women, which immediately makes me feel like I am all wrong for this role. I sometimes wonder if there is anyone out there that is a younger, ELCA lutheran, liberal, fiesty, don't push me around type of PW.

I didn't give up though! I tried searching for some blogs. Amazing women they seem to be, I must tell you. Quoting scripture, praying, etc...I guess their blogs are more of a ministry blog instead of about their everyday real lives. Not that them praying and things isn't their real lives, but do you know what I mean? I want to meet another PW that isn't afraid to say my house is so dirty right now that we now share living quarters with fruit flies. C'mon...isn't anyone else out there get tired of portraying this perfect image! I'm sure a lot of them are very human....they're probably too scared to share anything that isn't spiritual, positive, and good. I know first hand...you can be judged for that. They are probably just avoiding any type of negative feedback.

Anyway, so here I sit searching and searching for someone who is more like me. Someone in the same boat. I won't give up, but if you happen to run across anyone before I do let me know.

Here's what my classified ad would say....

Small town progressive Pastor's Wife seeks mid-twenties PW who struggles with the daily grind of being a PW. Must have open minded views (no racism, sexism, or classism please) and be willing to admit sometimes being a PW ticks them off. Must be able to admit the former statement out loud. Not being very good at singing, playing the piano, or cooking would be a plus. Must not talk like you are a walking bible study 100% of the time. Of course, Godly conversation and mutual friendship is preferred.


Is that too much to ask? I guess my ad is pretty precise and I'm totally kidding about the cooking, singing, piano playing thing. I just don't do any of those well. Maybe God is listening though:) Sending up a little prayer, because frankly I think my husband wants to duct tape my mouth shut sometimes:) I can't blame him.....I am not one to keep my mouth shut...oops!

Cursed

I guess 101 brings us to the fact that we are cursed. We are either horrible, horrible people, God hates us, or we just can't catch a lucky break. In the past however many months if you can name something that is "bum" luck then we've experienced it.

-both cats almost die or have to be put to sleep in the move (3 full months of absolute torture)
-we had vet bills like mad
-the day of closing we found out we had to come up with 8,000 extra dollars to put down on our house because of the economy at that time
-Riker has been having health issues, which equals more vet bills
-we had to replace half of our upstairs carpet from Suki
-furnace goes out in our brand new house
-Dan's phone broke
-my windshield cracked for no reason
-we lived in a mold infested death house for six weeks on an air matress with sporadic hot water and electricity
-three days before our house in Bismarck was supposed to sell the deal fell through
-the water heater went out in that house
-my dad broke his back
-my job sucks
-Dan's wallet and checkbook got stolen at a lock-in at CHURCH!
-I can't eat wheat and dairy my two favorite food groups
-I have to have surgery
-Dan has to go to Honduras right in the middle of Lent season
-the garage door opener in our new house quit working
-Dan's car battery died/then it wouldn't start and he needed quite a few repairs
-one of the first random strangers I met in town asked me if we were nuts for moving away from Bismarck, ND-this is after half of this stuff has happened

Maybe this is God's way of telling us that we made the wrong decision. Maybe we are cursed. I honestly don't know. So this post is because I can't lie. I can't sit there and post some post that says oh, look at us....see how happy we are because the truth is right now life sucks! But then again we do have some good things.....

-our cats didn't die
-we aren't going broke and can handle two mortgage payments
-I have a job
-sometimes everything breaks at once and it's just the luck of the draw
-we have each other

I know this list isn't as long as the other one, but I refuse to sit back and see the negative all of the time. The truth is I've been through a lot worse and this is NOT the worst. This is life and sometimes it's hard, sometimes it's ok, and sometimes it's wonderful. It may seem like EVERYTHING is going wrong, but it's really not. It's all in how you look at it....RIGHT?

Waiting for this stink of a season to pass!

Expectations.....and whose are they?

This word has been on my mind lately, actually since we moved and joined our new congregation. At our old church I didn't feel other people's expectations on me as much. I did spend a lot of my time with our student's chaperoning missions trips and building relationships with them. It was obviously easier for me to do with Dan being our youth pastor. Later I started getting involved with a funeral during the summer when I wasn't working. I did this because I felt called to and had we stayed would have continued during the summers. I don't know quite what it was just that I'm a people person, wasn't working, and it "popped" into my head more than once that I could and would want to try that, so I did it.

Our message today (from Dan;) was all about "hearing the call from God" and being open and listening to it. Sometimes we ignore it. How do you decipher when/where you are being called? I know there have been times I've ignored God's call only to hear it dimly in the background. Eventually it becomes so clear that I can't deny it anymore. Helping at funerals for example...I didn't offer to help the first time it popped in my head, it was probably the 3rd or 4th time.

So how do you tell the difference between God calling you or someone's expectation of you? Dan has always been SO good about this. He treats me like any other congregation member and doesn't expect me to do things just because I am his wife. These expectations are not from him. When someone approaches me and tells me that they think I should do this or that I get a weird and anxious feeling. I don't like it that's for sure.

Dan hadn't even been installed at our new church and I was already asked to be the vice president of an organization in our church. I wish I felt honored, but I didn't and I don't. Every intuitive nerve in my body tells me that it's not God calling me to do this, but it's an expectation of humans that the pastor's wife is "supposed" to do things like this. I've never even participated in this organization before let alone I'd have to lead it a year from now. How about an invitation to join them first or a we'd love to have you instead of a we think you need to do this. Every time I'm approached with a request with the expectation that I do this, I pull further and further away from even wanting to join them at all in the future. Is there a discriminatory term for this, you ask the pastor's wife to do everything because she's supposed to. I'll call it pastoral spouse expectivisim.

Don't get me wrong, I really like our new church. I just don't like some of the expectations some of them are putting on me. I don't buy into stereotypes that that's just what pastor's wives do. That might be ok for some, but not me. I am my own person. I have a name, a personality, a sense of humor, a brain, likes and dislikes. I have my own opinions, feelings, prayers, and hurts. I am NOT just Dan's wife. I don't want a label and frankly the more people try to put one on me the more I push away. More importantly my God has expectations for me and places he wants me to be, things he wants me to do and if I'm running around filling everyone else's expectations and not his then I don't think that's right.

I guess what I'm trying to say is that I want to feel and be called by God, not by people who think I should be doing something because it's the stereotypical role a pastor's wife has taken on. I know that those expectations will NEVER go away, but it at least feels better to somewhat vent about it. To remain true to myself and then to calmly and patiently listen to where I am truly feeling called by God.

There it is..........becoming a Befriender in our church has now popped into my head twice today. Hmmm.........maybe that's God calling? We'll see;)