When Answers Aren't Actually Answers

Last fall, before Spud was born, we met with a genetics counselor.  In Ontario, part of the standard testing for children with hearing loss is a genetic work-up.  It's optional, but we decided to pursue it, even though, at the end of the day, the answers wouldn't change a thing.  Depending on the results, the testing might have been able to tell us if Bean's loss was going to progressive, if there were other things that co-occurred with it such as vision loss, and the odds of future children having similar hearing loss.

Quick biology refresher:  Human beings are "programmed" by our genes.  Children get half their genes from their mom, half from their dad.  Boys are XY and girls are XX.   For a boy child (like Bean or Spud), David would have passed on his Y and I would have passed on an X (it's all I can do really).  Different genes are "expressed" in different ways.  Some genes are expressed through eye color, hair color, nose shape, etc.  Other genes are present, but aren't expressed (carrier genes).   We have learnt a lot about the human genome and know what some of the genes do.  There are way more that we don't even come close to understanding yet.

Our meeting last fall entailed talking with a genetics counselor at length, giving as detailed a genetic history as we possibly could, and Bean getting some blood drawn.  Between then and now, Bean's blood was sent off to some lab somewhere at which they tested it extensively looking for gene variations associated with hearing loss.  Today was results day.

We had been warned that genetic testing might not show anything, but in our case it did show something.  Bean has a variation in the GJB2 sequence.   I do not know what those letters stand for, just that they are important.  Variations in the GJB2 gene are linked to hearing loss.  So we have our answer, right?  WRONG!  Even though Bean has the GJB2 gene variation, the type of hearing loss it causes is not the type of hearing loss he has.  GJB2 linked hearing loss is usually high frequency and profound, neither of which fit Bean's loss.  However, the gene can also be expressed in other ways, such as patchy thickening of the skin, which Bean has (as do I).  

So, in short, he has a genetic variation that is linked to hearing loss, but it is not what is causing his hearing loss.  At this point the geneticist believes that Bean's hearing loss is hereditary (he got it from me) on a part of the genome that they have not yet identified.  The geneticist says that I am the prototype for Bean, so that's a interesting position to be in.  We were also told that there is probably a 50/50 chance of future children having the same type of loss and that we need to make sure future children are thoroughly tested for hearing loss as soon as reasonably possible after birth and followed.

Was the testing worth it?  It was interesting for certain. And I find it amusing that we've got ourselves a zebra, because really, what are the odds of having a genetic variation associated with hearing loss that isn't causing the genetic hearing loss?

General Update: Bean

Time for some general update posting! I'm going to start with Bean.  Bean is now 9 months old and is dashingly handsome!

Reality check: He usually isn't dressed quite that stunningly - we'd just gotten home from church when I snapped that photo.  Typically he looks more like this: 

or this: 

Last time I checked his mouth he had four teeth.  His central incisors on the bottom are through and his lateral incisors on the top are through.  He absolutely hates people sticking their fingers in his mouth so it is really hard to get a good look at how many teeth he has. 

He is having a lot of fun playing with solid foods.  We are loosely following Baby-led weaning, which for us means that whatever we are eating he gets a little bit to eat, with a few exceptions.  He does not get any grains, nuts, or dairy yet.  Other than that, it's pretty much all good.  He goes through phases where he has a particularly favored food.  Right now it is peas and carrots, often meat is right up at the top of his list as well.  If mama has it, he wants it.  If daddy has it, he absolutely must have it!

Bean is becoming increasingly more mobile.  He can crawl with lightning speed and is pulling himself to stand and walking along furniture and such.  He also loves to climb.  If it can be climbed, he will climb it.  We picked a climber up for him at a yard sale yesterday and he loves it.  I don't have any pictures of him on it yet though. 

He has also discovered the piano.  If the door between our apartment and the big house is open, he will frequently make a beeline for the piano.  He can pull himself up to reach the keys on his own, but particularly likes it if someone holds him on their lap so that he can reach more of the keys.  In a pinch his highchair also works as a piano chair.  The hardest part is keeping the music out of his reach because he is very much at the stage that everything and anything goes in his mouth!

Bean is not great at taking naps yet, but is getting much better at sleeping during the night (not that he was ever bad at sleeping at night). He will usually nap on my back in a carrier during the morning and we often lay down together in the afternoon for "milk and snuggles" or if that's not an option, he goes on my back in a carrier again (or on my front, depending on what is going on).  On very rare occasions I get him to lay down in his bed for a nap and then I take picture as proof that it actually happened:

We are still waiting to get a definitive "pass" on his hearing test.  We had one in September and it didn't go so well - it was neither a pass nor a fail.  We have another one coming up this  month, so hopefully we will get a definitive answer.  He does appear to hear things okay, so we aren't too worried. In the meantime I occasionally use some sign with him, but that would happen whether he could hear or not. 

All in all, he's a pretty great kid and I think we'll keep him around :)

Health Update

Someone asked me awhile back how my health was doing because I hadn't said anything about it recently.  She wondered if that meant I wasn't having any more seizures.  I wish that were the case, but it is not.  So this post will be a health update on me.  If that doesn't interest you, you might not want to read rest of this post.  And that is fine with me.
Seizures
My last seizure was the end of August, so almost a month ago.  The one before that was in March.  Both times I could have predicted that a seizure was likely to happen well before it happened.  That's both a good thing and a bad thing.  It's great because it means that I know my body and I know what is likely to trigger a seizure and what my "perfect storm" is when it comes to seizures.  It's not so great because it means that I have had enough seizures now that I know what my "perfect storm" is...  I'll be seeing my neurologist later this week and we'll see if he has any astounding insights to add.  Maybe (fingers crossed) we'll be able to start reducing some of my medication - I'm still on the same amount that I was when I was nine months pregnant with Bean...

Headaches
The headaches are still there.  Most days the headache hangs out around a 3 or so, though about a week ago it stayed at a 7-8 for most of a week.  That was not a fun week.

Allergies
If I don't eat anything I'm allergic to, I'm good. :) I haven't used an EpiPen since last spring sometime, so this is a good sign.  Bean however is showing some signs of a potential dairy allergy which doesn't make me happy at all.

Hearing
yup, ears are still broken.  It makes life amusing sometimes.  Today after school Littlest Brother was telling me he was going to the bush to fell trees.  He told me that if I needed him he'd have the tractor and chainsaw.  What I heard was him telling me that if I needed him to follow "vector chainsaw" which only made marginal sense, but sounded way cooler.

Other stuff
The newest "health" thing going on is something I call "sunburn syndrome".  So far no one actually knows what it is.  Everyone except my neurologist thinks it is a neurological problem - my neurologist referred me to a dermatologist.  So here's what it is:  Basically my body feels like it is sunburnt over a large portion of it at any given time.  It actually started when I was in highschool, but at the time would only happen 1-4 times a year and for less than 24 hours at a time.  Since about April/May it's been pretty constant.  It's annoying and irritating, but not the end of the world.  Combined with that has been a lot of deep muscle/bone/joint pain.  If you know what it feels like to close a car door forcibly on your arm, you have a general idea of the kind of pain - a kind of deep aching pain that you can't touch because it's so deep.  It strikes at anytime in anyplace.
The pain and the burning seem to go hand in hand, inasmuch as when one is worse, so is the other.  OTC pain relievers don't really do much for the pain or burning so I've pretty much given up on them.  Most days I just grin and bear it and try not to complain about it.
The doctor gave me one drug to try and calm my brain down so I wouldn't hurt as bad and it turned me into a narcoleptic zombie or something...all I wanted to do was sleep.  I couldn't form coherent thoughts, carry on a meaningful conversation or really function at all.  And it started affecting muscle control in my hands.  So I stopped taking it (with doctor's permision of course).  So then we tried another one and it pretty much had the opposite effect.  I didn't sleep at all.  Neither did Bean.  And my headaches were horrible.  I cannot function without sleep (one ingredient to my "perfect storm" is a lack of sleep) and I cannot function without sleep when I have a baby who is also not sleeping.  So I stopped that drug too.
I'm not sure what the next plan is.  What I'd really like to know is what this is and what is causing it. If you are the praying sort and want to pray for me, this would definitely be an area of concern - both the not knowing what is going on and the dealing with the pain part.

That's the super quick basic health update for those who are wondering.  I'll try and do a general life update sometime soon too.

January 26

The snow is falling in big heavy flakes outside our window and I'm settled down with a cup of orange juice, David is listening to the sound track from Aladdin, and our three fish are swimming happily in their tank.  So far today I've baked bread, taken a nap, and worked out. (and cleaned up cria vomit, but that's something I'd rather not think too deeply on).  It's a good day.  And since it's such a good day, I thought I'd take a few moments and update everyone on what's been going on.
This month has been especially busy with appointments of various sorts. We knew they were coming so none of them were really surprises, but they've kept us busy.
One of the most exciting appointments of this month was to my audiologist in London to get my new hearing aid!  My right hearing aid had an unfortunate accident this past fall and met with an untimely death.  Based on the age of the hearing aid and the progression of my hearing loss, it was a better choice to replace it completely than to try and have it repaired.  So, earlier this month I picked up my spiffy new, blue, behind the ear (BTE), Quantum 12, Unitron, hearing aid.  See?

The BTE style is new to me, but so far, I'm loving it, with one exception.  It pinches a bit at the top of my ear.  I see my audiologist again this week for a test in the booth and hopefully to get the tube readjusted so it doesn't pinch.  It has way more bells and whistles than any of my other hearing aids have ever had and one of the best things is I can wear it outside when it is windy and not be overwhelmed by wind noise!

On the same day that I got my new hearing aid, I also met with my neurologist (also in London - it was nice to combine both visits in one trip, since London is quite a drive and it is winter).  The reason we'd requested the meeting with the neurologist was to see about taking me off of one of my medications, Depakote.  Depakote has many undesirable side-effects, and although it was controlling the seizures and helping with the migraines, David and I felt it was time to see about switching it out to something friendlier.  The neurologist agreed and we have started to put me on a drug called Lamictal.  It should also help with the seizures and migraines - with less negative side effects.  It will take a total of 14 weeks to put me on the Lamictal and off the Depakote, putting as near the end of April before the transition is complete, if all goes well. So far everything is going well, though I do increase my dose of Lamictal this coming week.  Prayers that the transition continues to go well would be appreciated. 

That same day I also gravity checked a particularly icy spot in a parking lot and sprained my knee and ankle...and then thought it was a good idea to go to the mall to "walk it off".   I may have heard a thing or two about that from my physical therapist at my next visit.  Oops!

Speaking of my physical therapist, I started physio early in the month to deal with a very painful hip.  The hip has been giving me trouble for many months now and it was just a matter of waiting for the physio department and my schedule to have openings at the same time.  Right now we are doing a mixture of stretches, ultrasound and electro-therapy to try and reduce the inflammation and make it not hurt.  It's going slow, but improving. It does involve driving to the hospital twice a week to get it worked on though, which eats up about 3-4 hours a week total (driving time + treatment time).

The other big thing this month is that I have started school again.  I am doing 1 class, online, and so far it is going well.  I'm not even behind yet!  It's the same class that I tried to take last semester but had to stop when my health took a nose-dive. So far, I haven't gotten to any new material, but I'm processing the old material better now. 

One last picture to close this off.  This is how David and Mauschen like to spend their lazy afternoons (when we have them...which is rare)

(I may be guilty of tickling those toes when they are stretched out like that)

Don't Point!

I stood singing in church one morning, my hands moving as much as my mouth.  The church-provided FM system hung over my right ear, the wire snaking down to the box clipped to my pocket.  Out of the corner of my eye I saw the little blonde haired blue-eyed girl in the row behind me pointing at me.  I turned to smile at her and watched her ask her mommy why I had the funny thing on my ear. I watched her mommy pull her hand down from pointing and saw the words "don't point" as they came out of her mother's mouth.  The rest of the reply was lost as the mother and the child turned away and we moved into a time of prayer.
My heart wanted to yell at her or at least offer gentle advice, since I'm not exactly the yelling and screaming type of person.  I wanted to tell to let her daughter point, to let her daughter ask questions, to let her daughter ask *me* questions.
Some of you mind think that this sort of response encourages rudeness or impertinence and perhaps it does, but that's not how I see it.
The genuine, inquisitive, questions of a child who doesn't yet understand the world around her are not offensive.  Neither are the genuine inquisitive questions of an adult who does not understand the world around them.
What *is* offensive though is people who assume they know the answers without asking.  The people who don't asking can't really know.
If we hadn't been sitting in church and I had the opportunity to interact with the child, I would have taken my FM system off and handed it to her and let her listen.  I would have shown her my hearing aids and explained that my ears were broken and that hearing aids were like glasses for my ears.  I would have told her that I use my eyes to "hear". I would have asked her what her name was and then shown her How I would fingerspell it.  I would have answered her questions. And I would have answered the questions that her mom was too afraid to ask.
And I would have told her them that pointing was okay, as long as they weren't laughing as me when they pointed.

Filling in the Blanks

When you hear like I do,  you are constantly filling in the blanks.  And when you’ve been hearing like I hear for as long as I have, you get pretty good at filling in the blanks.  Let me explain…

There are many word pairs that sound very similar to me/my brain.  For example:

loom – wound

lettuce – let us

send forth – send forks

scrolls – squirrels

Irenaeus (theologian) – urine on us

affect – effect

she – he

pants – dance

hooks – books

redress – regress

let – led

gun – done

This is just a quick list - things that have tripped me up in the last week or so.  At first glance, the words on that list look different enough from each other in meaning that it would be difficult to confuse them. But take a sentence like this, which I actually heard this week.  It was said by my mom, in reference to my 13 year old brother, who is rather accident prone (he doesn’t always think things all the way through) and who also weaves on a table top loom.

“I need to go help him redress/regress his loom/wound because it’s become un***n” (***  represent that I missed part of a word and had to fill in).  

I may have missed more than that, but don’t remember because the words were easy to fill in.  For example, I don’t think I heard all of the “him” or the “his” but they were easy to fill in because I knew she was talking about Isaac.  Based on what I heard/didn’t hear, I could have filled in the blanks in multiple ways, more than one of which made sense:

…redress his loom because it’s become undone

…redress his wound because it’s become undone

…redress his loom because it’s become uneven

...redress his wound because it’s become uneven

…regress his loom because it’s become undone

…regress his wound because it’s become undone

…regress his loom because it’s become uneven

...regress his wound because it’s become uneven

All of the options containing “regress” could be dropped quickly.  The word “regress” just didn’t make sense with the other words my brain tried to put in the sentence.  That still left me with four sentence options that made wonderful amounts of sense, but warranted two very different responses!

…redress his loom because it’s become undone

…redress his wound because it’s become undone

…redress his loom because it’s become uneven

...redress his wound because it’s become uneven

…regress his loom because it’s become undone

…regress his wound because it’s become undone

…regress his loom because it’s become uneven

...regress his wound because it’s become uneven

Had Isaac hurt himself or was his weaving project in jeopardy?

Acknowledging that I couldn’t fill in the blanks on my own and asking more questions led to the conclusion that Isaac was fine, his weaving on the loom had become uneven and she had to help him make it even again.

8 options for 1 sentence.  After my own work, 4 options for the 1 sentence.   For me, this is not unusual.  This is a part of my everyday life.  Every time I take in information using my ears, with or without the benefit of speech reading, I have to fill in blanks.

As frustrating and as confusing as this often is it is also a blessing.  I have a friend with a very similar hearing loss to me (different cause, similar results) and see agrees with both the frustrations and the blessings.

We are used to filling in the blanks.  This is great when you are learning a new language.  Because we are used to not hearing every word, when we try to learn a new language we don’t get upset about missing a word or two.  Of course, this has its downfalls too because we don’t always pay attention to the details such as gender and case (we miss most of them in our first language, why should we worry about small details such as gender and case?!?!). Naturally, once you get passed the beginning stages of a language, this becomes a problem.

Honestly there was no huge point to this post.  Just thought maybe someone would be interested in what it’s like to hear like me, so maybe you can understand why I sometimes ask questions that make no sense or respond inappropriately.  Cuz sometimes, I fill in the blanks wrong.

My Father's Voice

Every morning that I'm on the farm, almost like clockwork, I hear the good morning voice.  It starts in the back on the upstairs hall "Good Morning Isaac" and then moves forward calling to the girls.  Then downstairs for Ben, Reuben, and Me.  The order changes only if we change beds or someone isn't home.  Every time it says "Good Morning" there is a replying, sleepier voice responding with "Good Morning Papa."  If we fail to respond, the voice calls to us again.  And again, and again, until we respond.
It's that voice, that deep, reassuring voice, that brings us all out of our world of dreams, or the land of half wakefulness that we are lying in. It's the voice of our father, calling to us to once again join the land of the awake.   To rise and do our chores, eat breakfast and continue with our day.
On occasion, his alarm doesn't go off or he is tempted to snuggle under the covers a little longer than normal, or he gets a service call before wake up time and isn't able to "good morning" us at the normal time.  Even though it's a little thing, even though we are all perfectly capable of getting ourselves up in the morning, it throws off our routine.
Often, I am half awake, or even all the way awake before he calls me for morning time. I lay there in my bed and wait for him to call to me.  My ears are tuned to his voice, to the words he is going to say and I am ready to reply.
One morning I lay in my bed, waiting, and waiting, and waiting (he'd snuggled longer than usual).  As I waited I thought about it.  I'm super attentive to my father's voice in the morning time, but what about my other Father?  How often do I sit in silence, in stillness and wait for Him to speak to me?  If I'm completely honest, not often enough.  It's easier to listen for a familiar voice with my normal ears.  It takes more patience to listen with the ears of my heart to another familiar voice. This makes me sad.  It should not be this way.
What about you? Do you find it easier to listen with normal ears than the ears of your heart? How do you train the ears of your heart?
I think it has a lot to do with routine and practice.  My normal ears are trained to hear my father's voice.  It comes every morning.  I expect it.  I spend time with my father, so I know his voice. I think, if I want to tune the ears of my heart towards my Father, I need to make it more of my routine to listen to Him instead of fitting Him into my schedule.  And, I need to expect Him to speak, to call to me.
All this thinking reminded me of a song.  Here's a video.  Unfortunately, I couldn't find one that was captioned.  Sorry.

Rant

This rant is directed at no one in particular...mostly just at life in general, yes there have been more than a few triggering events in the last week or so, but they have all been dealt with in a more appropriate manner than a public rant.
It is very frustrating when people try and decide for me what accommodations or support I need or whether or not I should participate in a certain activity.  

I realize I have limitations.  I realize there are things that I cannot or should not do.  I know what these things are.  I know that being around strobe lights is a bad idea.  I know that eating a peanut butter cookie is a bad idea.  I know that staying up late/not getting enough sleep is a bad idea.  I know that driving a car is a bad idea until the seizures go away.  And hey, guess what!  I can make decisions about these kinds of things all by myself!


I know that I need signal lights to alert me to alarm clocks and smoke detectors.  I know that I need to input information in ways other than just normal sound. I know that I need to be careful what I eat so I don't get sick.  I know I need to watch my fluid and potassium intake.  I know I need to take my meds.  I know I need to use handrails if I'm having a bad balance day.  And hey, guess what! I know all those things all by myself!


Even if I don't always act like it (I still like coloring books and play-doh and popsicles and playgrounds), I am an adult. I can make these decisions myself.

I'm no longer 5 or 6 years old.  Or even 14.  I am a responsible adult (at least, most the time).
I touched on this briefly in the post "In the Interim" a short time ago when I shared a post from a friend, but this time, it's my words.   Just because I live with differing abilities doesn't mean I can't make my own decisions.

Let me be a grown-up, please.

The First Time Can Only Happen Once...

It seems kind of self explanatory, you can only do something for the first time once, but it's easy to forget.  Sometimes, when we look at our churches, we try and look a them with the eyes of a first time visitor, but really, we can't do that.  Sometimes, we need a real first time visitor to come look with fresh eyes, but that isn't always practical.  So, what we can do, is try and look with fresh eyes.  Maybe visit a church that is new to you.  Pay attention to what you notice/don't notice and then come back to your church and look for those things.
One Sunday in February I visited a new to me church (I wrote about it some in the post entitled "come, for all things are now ready"). What I have to say next might sound highly critical of the church.  In some ways it is, and I feel badly about that, but at the same time, I want to be honest about how I experienced this, in the hopes that it will encourage everyone who reads this to look more critically at their own churches.
 My visit to the church started before I actually got there.  Because of the role I was going to be playing in the service, it was going to be important that I could hear what was happening. Otherwise, the group I was working with was going to have to make some changes.  We wanted to know so we could plan ahead.  I started by visiting the church website, looking to see if they had a sound loop or FM systems available. Their website was less than helpful.  There was no statement of accessibility of any kind on their website.  They even had a link to their bulletin for the Sunday I was going to be there.  I read through it, hoping for some statement of accessibility. Nothing.  To raise my anxiety, the picture of the church on the website looked as if it was a great big, old, beautiful church building.  I love old beautiful church buildings, but typically, they are inaccessible.  We decided to wait until we got there and see how bad things were.
We arrived at the church in good time, about half an hour before the service, mainly because we had to practice. I looked at the doors as we entered, hoping to see the familiar blue sign indicating the presence of the a hearing loop. There was none.  I look at the door to the sanctuary, hoping that there would be a loop (that would make things a lot easier for me).  There was no familiar blue sign.  Since I was there way early, and since, because of the role I was playing in the service I need to talk with the sound technician anyways, I asked him if the sanctuary was looped.  It was, which was a great thing for being able to hear the sermon.  However, the loop did not include the stage, which meant it was not very helpful for me being able to hear while I was on the stage (perhaps the most critical place for me to actually be able to hear what was going on that morning).  I was frustrated, both by the lack of signage indicating the presence of a loop, and by the fact that it didn't encompass the stage.  The first frustration was the greatest though.  I was there in plenty of time and need to speak with the sound technician anyways, so I could ask about it and get my answers.  A "regular" visitor would have had no way of knowing that the sanctuary was looped.  
I was already in a state of judging accessibility in the church, so I kept my eyes open to see their strengths and weaknesses.  Unfortunately, I didn't see many strengths. Their sanctuary was beautiful, with smooth wooden pews (very fun for sliding on), but there were no "short pews" to allow for wheelchairs to be present in the sanctuary in a non-conspicuous way. There was a wheelchair lift to allow wheelchairs to come up to the level of the sanctuary, but it was one that needed a key to operate it.  A visitor would not immediately know who to ask for the key.  I can't judge how conscientious the church was about having a person with the key (or a person who knew where the key was) at the bottom of the elevator (on the main level...the sanctuary was up a flight of stairs) to assist visitors because no one in our group was in a wheelchair.
I also didn't get a chance to check out the restrooms, but based on what I was seeing in the rest of the church, my hopes weren't too high.
The big thing that struck me about this visit, and what I took away from it is that accommodations are only useful if people know they are there.  If your church has accommodations available, make sure you publicize them.  If you offer gluten free communion, list the ingredients of the gluten free bread/wafer you use in your bulletin and on your website (people with gluten allergies may often have other food allergies as well) and make sure it is correct.  Check it frequently (every time you buy new bread or wafers!)  If you have a sound loop, make sure signage is in place at your church and on your website.  If you have FM systems available, make sure people know.  Same with large print hymnals or orders of worship.  It's great to have accommodations, but they are going to be under-used if people don't know they are there.

Symposium

This is going to be short.  I've been up since about 3:30am and am exhausted.  I was a bit excited for symposium so I didn't sleep well.  We (being me and LDK) left about 7 this morning to drive to GR.  It was freezing rain out so it took a little while, but we made it there safely.  We got there and I checked in.  After checking in I stopped by the info booth and asked about my interpreters.  I was led to the first place where I would be and introduced to my interpreters.  We had a bit of time before the session so I got a chance to converse with them and get to know them a little. Then things got started.
Symposium was the first time I had ever requested interpreters.  In the past I've always just limped along with lip reading and guessing. So I wasn't quite sure what to expect.  I had nothing to be worried about.  They were phenomenal.  I felt like I could actually understand what was going on in both worship and in my workshops. They signed with a mixture of ASL and Signed English (that's how I sign) and that, combined with what I could hear, was a perfect mix. They didn't just tell me words, but expressed emotion, told me which instruments were playing, told me when people were laughing... I learned some new signs, practiced old ones, and felt comfortable doing it.
Now though, I am completely exhausted so I need to make sure I have everything ready for church in the morning, take my shower and crawl in bed, hoping I sleep better tonight than last night.  There might be more on this topic later.

Blarg!

Usually I love my hearing aids. Right now though, I think we are enemies.  I've got a nasty pimple in my left ear that makes wearing my left HA uncomfortable.  Then, last night, my right ear suffered a high velocity impact with a very solid object, also known as the head of a child I was playing with at work.  The impact drove my hearing aid much farther into my ear than it ever really should go and did something creative with my earing and ear lobe. I'm not sure whether the HA cut the ear drum or just cut inside of my ear canal (it's hard to see into ears, especially your own), but either way it hurts like crazy and bled.  There is visible bruising on my ear lobe and my neck just behind my ear. The child's head was fine.
This is why I should not wear my hearing aids when we have gym night and I am playing with the kids.  Except that I'm the teacher and actually need to know what the kids are saying. Or they should invent hearing aids that are soft and squishy for crazy people like me who play with preschoolers/kindergarten students.

Going to Church

The title of this post could just as easily have been "Going to Class" or "Going to Lecture" or "Going just about anywhere", but church is a place I've go to a lot, so it's been on my mind. And, to make writing this easier, I had to pick something.
When you live with a disability, going to church is an adventure.  It takes more thought for you than it does for the average person.  People in wheelchairs or people with mobility impairments have to think about the availability of elevators or stair lifts and accessible restrooms.  People with visual impairments have to think about whether or not there is a large print or braille hymnal or order of worship available.  People with feeding issues have to navigate how they will take communion.  People with cognitive disabilities have the face judgement (whether conscious or unconscious) and stares and the possibility that they won't understand what is going on.  People with seizures have to think about how others will react if they have a seizure during worship. But none of those things are really things I'm qualified to write about (except for the last one, but it's pretty boring: people who don't know you and that this is "normal" freak out, people who do know you take it in stride and life goes on.  By that time I'm unconscious so I don't notice until later anyways.), at least not on a personal level.  What I can write about is what it is like to go to church when you can't hear. Some of you may recall from "How Much Do You Hear?" that I have hearing loss that makes life a little more interesting, especially places like church, where being able to hear is important.
Even going to my home church, the church where I grew up, is an adventure every week.  DRC has personal listening devices (FM systems) available for those who need them. Growing up, I mostly saw older people with them.  Now, it's mostly just me.  I'm not home all that often anymore, which means the system is used less often and isn't always working the first week I'm home.  However, when it works, it's great.  I pick up a receiver box before I go into the sanctuary. The box is about the size of a deck of cards  and I can clip it to my pocket or waistband (like a transmitter box on a walking microphone).  It has a single ear phone attached to it hangs on my ear over top of my hearing aid.  I switch my hearing aid to "telephone" mode and turn the box on.  If the system is turned on, I get to hear everything that is being picked up by the microphone.  I can turn the volume up loud enough that I can hear it clearly.   Out of all the ways I go to church, this one gives me the most control over the volume that I hear the service at.  I like that.

An FM box and ear piece very similar to the ones I use at my home church

Using the FM system does however have its issues.  Using a personal listening system is a very visible way to worship. People can see the box and they can see the earphone.  Small children stare at me.  Sometimes the earphone does not want to stay on my ear.  If I'm holding a baby or small child, they pull on my wire and it doesn't stay on my ear. Some weeks I have nowhere to clip the receiver box and have to hold it in my hand all service. The FM system amplifies every sound frequency the same much, which isn't the most useful, since I can hear some frequencies better than others (it's simply a limitation of the type of system). Sometimes the batteries die and I have to go to the sound booth (or send my dad to the sound booth) to get new batteries (which is only effective if they have spare batteries. They don't always). The battery change takes time and in that time I miss enough of the sermon that I'm usually pretty lost when I get the box back.  Some weeks the sound tech forgets to turn the system on (that doesn't happen very often) and some times, especially if a lot of wireless microphones are being used, there is interference and I hear more static (fuzz) than anything else.
The system does let me participate in worship and for that I am grateful. It lets me control the volume I participate at, and since the earphone only goes on one hearing aid (I get to choose which side I want to listen on, depending on which ear is being more functional), I can still hear the person next to me (which makes congregational singing easier to follow. A bilateral (two headphone) system would make this more difficult). Also, it only amplifies what is going through the microphone, so I don't get overwhelmed by amplification of ambient noises (bulletins rustling, babies crying, people coughing...) A general amplification system picks all of this up and it gets loud.

When I go to church in Holland, I use a different kind of system.  First Church has a hearing loop installed in their church.  This is the most discrete way that I go to church and I like it the best. DRC used to have a hearing loop, but when they renovated they removed it. If you want to know more about the technicalities of how a hearing loop works, check out this site.  I'm not overly technically minded (and most of you don't care about the specifics), so I'm going to keep my writing simple.  Basically a hearing loop means there is something installed, that when I switch my hearing aid to the right setting, it transmits directly to my hearing aid. It's like having a loudspeaker directly in my ear.  Lots of places (especially in Michigan) have loops.  The lecture hall at seminary even has one (as long as the professor/presenter uses the microphone, it's great.  And in that room, they usually do). I know a place has one when I see this sign (or something similar):

Seeing this sign outside a church or theater or lecture hall makes me happy.

When I go to First Church I don't have to worry about picking up a receiver box or finding a place to clip it. I go into the sanctuary and switch my hearing aid (or both of them) to "telephone" mode.  The sound instantly changes.  Instead of the light conversation of those around me, I hear the organ music and when the liturgist begins worship, it transmits directly to my ear.  Often, for the first part of worship, where we alternate between listening to the liturgist and congregational singing/response, I'll only have one aid switched over to "telephone" mode.  That way I can still hear what's going on at the front and still be connected to those worshiping around me.  When it's time for the sermon and I no longer need to interact with those around me, I switch both ears over. After the sermon, I switch back to one, and when the service is done, I switch to "crowd" mode and I can transition smoothly to conversation.

The other option for going to church is no amplification.  This happens most often when I go to a new church without a T-coil or FM systems available, show up to a new church too late to find out where the FM systems are, or attend "church in the park" or something similar where there is a very rudimentary sound system if there is one at all. This is the most frustrating way for me to go to church since I can't really follow anything at all.  The one exception to this is those rare times where there is an interpreter available. Then, as long as I can see the interpreter, I can follow along.  I've worshiped this way once before and it was wonderful.
Someday I won't have to worry about going to church or anywhere else and not being able to follow what is going on. Until then though, I can do my best to make others more aware of what people like me have to face. 

How Much Do You Hear?

When people find out that I'm hard of hearing I often get asked how much I actually can hear. What usually follows is a long, confusing explanation of the nature of my hearing loss.  What makes my hearing loss weird, frustrating, confusing, and sometimes wonderful, is the fact that it is a fluctuating loss.  That means exactly how it sounds.  It changes.  Below I'm going to post some pictures to explain it better.
In addition to an organic hearing loss (what I explained above) I have a central auditory processing disorder (CAPD).  The CAPD basically means that my brain doesn't always know what to do with sound.  Getting it through my ears is only part of the problem.  I might be able to hear an alarm going off, but my brain won't necessarily realize that it is an alarm.  If a sound (music, voice, etc) is coming from one location, I won't likely be able to identify the direction it is coming from. My siblings used to take advantage of this in a rather cruel, but humorous game...we had a portable telephone that they liked to hide.  Then they would push the "find" button on the base to make the handset ring and I would have to located the phone just using my ears.  They enjoyed it and if I was in a good mood, I enjoyed it too, just because I was so bad at it.
In addition to bilateral (that means one for each ear) hearing aids, I rely largely on visual input (lip reading, the written word, sign language, flashing lights), since my brain knows how to process that much better. So if you tell me something on the phone, even though I hear you in the most basic sense of the word, I'm much less likely to know what you said than if you e-mailed me.  Likewise, if I only hear your name, I'm more likely to forget it than if I saw it on a name tag or saw it signed.  If my signal light flashes I'm more likely to realize that it's time to get up and get ready for class than if an alarm clock simply rang.
Now for some pictures.

This is an audiogram...actually it's a composition of two audiograms thanks to the wonderful audiogram creator on this site that let me enter data from two of my audiograms.  The numbers on the vertical axis are numbers that represent loudness.  The bigger the number, the louder the sound.  The numbers on the horizontal axis represent frequency.  I think that has to do with lowness/highness of sounds.  The blue lines and "x" marks are my left ear, the red markings and "o" markings are my right ear.  The two lines on top are from one audiogram (on a relatively good day) and the bottom ones are from an audiogram on a less good day. 

This is another version of the same two audiograms as above, but this time with pictures.  The template was found on this site. Anything that is above the red and blue lines is sounds that I am not likely to hear without my hearing aids in.  My aids are set mostly in relation to better days (the top set of lines) since I have more better days than bad days (at least as far as we can tell without doing audiograms daily), so on a less good day (the bottom lines), even with my aids in I'm not going to get much better than the top set of lines.  This means, that on a less good day, even with my aids in, I'm likely to have trouble with hearing conversations or lectures. 

These are my hearing aids.  The clear one goes in my right ear and the other one goes in my left ear.  On better days they bring my hearing almost to a normal level, but they can't do anything for the CAPD, so even with them in I tend to rely largely on visual input for comprehension.

I also just got fitted swim plugs to keep the water out of my ears when I swim.  Because my ear canals are funny shaped, water would get in and get stuck in there and I'd get ear infections almost every week.  Now that I have these I shouldn't get near as many ear infections. :)

A Little Taste of Heaven

On Sunday I had the opportunity to attend a conference on including people with disabilities in the life of the church. It shouldn't really surprise anyone who knows me well that I was excited for this conference.  In addition to attending as a participant, I had been asked to help lead the worship service at the end.  The people in charge of the communion service thought it would be neat if I signed along with the songs from the front (instead of from my seat like I usually do) and if I signed the communion liturgy. They got me a copy of the songs and liturgy ahead of time and I was set to go.
I got a ride to the conference with a professor, who was also leading worship and facilitating a workshop and we arrived early to set things up for worship.  While we were standing at the front of the sanctuary, figuring out where things were going to work best, someone asked if I was the interpreter.  I said no and that I couldn't hear well enough or sign well enough to be an interpreter, but I'd be signing some during the worship service at the end of the conference.
A few moments later the person who had asked if I was the interpreter came back with two more people.  She introduced them to me, Y and A.  At first I didn't know why these introductions were being made.  The names didn't sound at all familiar to me.  Then I saw Y signing.  Y was the interpreter and A had a profound hearing loss. The three of us starting talking/signing.  We talked about ASL.  We talked about hearing loss.  We talked about which workshops we would be attending.  We worked out a method for team interpreting the worship service.
Y asked me if I had an interpreter for school. I told her I didn't.  She asked why not.  I told her that although I sometimes thought it would be helpful (even on a good hearing day, I can process visual input way easier than auditory input), I didn't think my sign was good enough for it to be truly beneficial. Afterall, I use ASL signs in an English word order. I haven't had enough instruction to learn the ASL syntax, and most the time I'm not with people who care.  I told her that I usually get by reading lips and hearing what I can.
She wasn't overly satisfied with my answer and kept pushing.  She told me about a type of interpreting where the interpreter uses ASL signs in English word order and puts everything on his/her lips as well.  I think she called it transliteration. (I may have made that word up, I'm not sure).  I listened (with both my eyes and ears), but didn't put too much on it.  The conference started and Y interpreted most of the opening announcements and introductions.  A and I watched and I realized that Y was signing in English word order (for the most part) and putting everything on her lips. I understood exactly what was going on, except for the name of one person, but Y told us she didn't catch it either. :)
We divided for workshops.  Y and A were in one workshop and I was in another.  The workshop was great and I got to talk some about inclusion for people with hearing loss and processing disorders.  After workshops we came back together for the communion service.  Y and I took turns interpreting.  I signed the songs and the liturgies that I had practiced ahead of time, Y signed everything else.  As part of the service, conference participants got to share what they learned, popcorn style.  I was sitting at the front of the room, with my back to everyone else and it was a rather large room.  I knew this part was coming and had kind of resigned myself to not knowing what people were saying.  That was before I knew Y was going to be there. Y interpreted everything everyone said.  I "heard" every word.  I felt like I was in heaven.  The entire worship service, I knew what was going on.  I had been able to follow everything and my brain was exhausted from trying to figure out sounds.  I don't remember the last time that happened.
On the way home, I thought more about what Y had said about getting an interpreter for classes, but continued to brush it off.  Then I went to classes yesterday. One class in particular, I struggled to follow what was going on.  The professor, I've been told, tends to mumble.  I just know his lips are very hard to read and he likes to talk to the white board.  There was some lively discussion during class, but by the time I located the speaker, they were half done and I'd missed it. I left class feeling like I wished I'd had an interpreter like Y to put it all in a form that I could understand.
I still don't know if I'm going to pursue getting an interpreter, but it's a thought tucked in the back of my mind. Having worship interpreted in a form I could understand, was a little taste of heaven for me.  Someday, when I get to heaven, I'll be able to understand worship all the time, and that is going to be a good, good day.

Mistaken Identity

This is not the blog post I intended to write today.  I had one all thought out about blessings and leaving for seminary and such.  Maybe it will come later.  Maybe it will just go to the place where unwritten blog posts go.
Anyhow, for the story.
In July, I went to the States for a family reunion and we stopped in Holland, MI (where I am moving in 2 sleeps) and opened a bank account for me so that we could close my Iowa account and so that I'd have money in Holland when I got there. Sometimes I think ahead like that.  We got it all set up and life was good.
A few weeks ago we went ahead and got my online banking set up.  It was a bit of a tricky problem because my bank card hadn't arrived by mail yet.  I was supposed to be sent to my Canadian address.  But the bank people were really helpful and we got it done.  Life was good.
As of yesterday, my bank card still hadn't arrived in the mail.  We were going to call the bank people and have them send it to my Michigan address, since sending it here would be rather pointless. I ruptured my ear drum yesterday in my good ear and my other ear is brewing a wonderful infection, so mom was going to have to help me with the phone call anyways. We didn't get a chance to make the call yesterday, so it was first on the list of things to do this morning, after bottles, barn chores and breakfasts.  In preparation for the call I logged onto internet banking to check balances.  Knowing my account balance helps verify that I am who I say I am (when mom helps me with a call, she acts kind of like a relay operator, since I can read her lips and the telephone doesn't have lips for me to read.  Often I'll voice into the phone to assure people that I'm really there).  I logged on and tried to check my account balance and my account was gone.  There was no listing of it.  Nothing.  I thought maybe there had been an error loading it.  I logged out and tried again.  And again.  And again.  No change.  My account (and all the money I had saved for books, rent, etc) was gone.  I started to freak out a little.   We called the bank.  Now, not only did we need the card sent to my Michigan address, we needed to know what was happening with my account.
Mom called the bank and we went through the normal hoops of me verifying who I was and giving verbal permission for them to speak with mom on my behalf because the telephone doesn't have lips.  Mom asked about my accounts and was told that they had been closed and a cashier's check had been sent to me.  I just about hit the roof.  I had not asked my account to be closed, nor had I received a cashier's check.  Mom spoke more with the phone.  She was put on hold and transfered to a supervisor.  Same procedure.  I verified who I was and gave permission for them to talk to mom.  Mom told them what was going on and asked what was up.  Same answer.  On hold and transfered up a level.  At this level they needed permission in writing to talk to my mom on my behalf so we wrote a fax and disconnected and sent the fax in.  At this point, the most logical explanation was that my identity had been stolen.  I was in tears.  I did not have the time, energy or resources to have to rebuild my identity.
We sent the fax and waited for the supervisor, S, to call us back.  S. called us back and began to sort out what had happened.  I couldn't hardly follow the conversation since I was only seeing half of it, but mom's face told me that something really strange was happening.  She finished on the phone and explained to me what S. had said.  Because the bank had a non-US address for me (we had opened the account with my Canadian address), and the address they had wasn't valid/complete, and because they could not get ahold of me (the phone number they had was my new cell phone number, which has been turned off since I'm still in Canada, they assumed I was a terrorist and closed my account and took my money so I couldn't do bad things with it.  When I get to Holland on Monday, my dad and I have to go into the bank and finish sorting things out, but it should all end well, eventually.
The relief at finding out that my identity had not been stolen was so great that being mistaken for a terrorist wasn't a big deal.  We laughed about it.  I  mean, anyone who knows me, knows I am not a terrorist.  I mean, I can be scary and instill terror in disobedient children when needed, but I am nothing close to a terrorist. I do not have any plans of blowing things up or setting off bombs or attacking society or anything.
Joy =/= terrorist.
After I had some time to process what had happened, I started to think about the lesson in it, because there had to be something.  Mistaken Identity.  Someone assumed something about me based on partial information (the bank branch in Holland knew what was happening, that I was opening an account in preparation for moving, but hadn't moved yet, but the "higher-ups" didn't have that information) and it led to the mistaken identity. Someone thought I was someone that I wasn't and it caused all sorts of problems and tears and stress.  It made me really glad to know that there is one aspect of my identity that will never change and will never be mistaken for anything else, no matter what happens or where I move to.
I am a child of G-d.  My name is engraved upon the palm of His hand and He has placed His mark on me.  No one can steal that identity (though the enemy tries).  Nothing can change that identity.  I belong to Jesus and regardless of what anyone says, does, or assumes, that is not going to change.  That is an identity I can hold on to with both hands and don't need papers or signatures to support.  And it's so much more important than any other part of my identity, because it's the one part that will last into eternity and beyond.  Praise the Lord that no one can take that from me.
And, I'm not a terrorist.  That's a good thing too.

I can't hear you if I can't see you!

"Please look at me when you talk to me."  "I can't hear you if I can't see you!"  I can't count the number of times a day I say those things (or something similar) to the people around me, generally to people who know that I can't "hear" them unless I can read their lips.  When I'm talking with some one, it takes a lot of effort for me to listen.  I have to really focus in on them.  I can't be listening to two things at once.  If there are too many distractions I can't listen at all.
I was thinking about this a little ago, after another frustrating episode where I missed the larger part of a conversation because I wasn't focused enough to read lips fast enough and it made me think about listening to G-d.  If I wanted to have a voice to voice conversation with you, I'd make sure that we were in a place without background noise, with good light, with no distractions so that I could understand what you were saying.  If we were having a phone conversation, I'd make sure I was on the amplified phone and there was no background noise.  To talk with people, I take the effort to create an environment conducive to talking.  I stopped and asked myself, what do I do when I want to talk to G-d?  Do I take the same amount of effort to ensure that I can hear G-d?  Do I put myself in a quiet place, without distractions, where my focus can be solely on Him?  Or do I crowd my time with so much "noise" (music, teachings, etc) that I don't focus on Him?  What would it mean for my life to take the time and effort to listen to G-d, the same way that I take the time and effort to listen to other humans?
How do you quiet yourself to hear G-d?

Babies, Breathing, and Books

Everytime I think things are going to slow down for a bit, plans change and life goes crazy.  I guess I should just stop hoping for things to slow down.

We had our first baby on Wednesday (Duchess) who is doing well, followed by a big boy on Friday (Otatop).  Otto was so big that he got stuck on the way out and had to be manipulated, but he is doing well now. Hopefully there will be a few more little ones in the very near future.

Thursday was grocery day, so Mom and I were all over the place getting regular groceries, gifts for grade 8 Sunday school graduation, birthday presents for Ben, and Father's day presents...Then we picked Isaac up from school and he informed us that he had an open house/presentation at 7, back in the city, so it was quick home to eat and clean up and head back into the city.   Isaac did a great job presenting his Nobody project and then it was up to the classroom for a "tour" of the micronations that the class had created. And that is where plans changed. One of the micronations was serving coconut icecream.  Gluten free, dairy free, nut free, etc, etc, etc.  Mom and I both checked the ingredient label, twice and determined that it was safe. So I had some.  It wasn't so safe.  

If you want to skip the details, just know that it was very bad and go to the next paragraph.  If you want the medical details, keep reading...within five minutes of eating it my tongue was swelling and itchy so I took 50mg Benadryl and sat in a chair to try and breathe.  Benadryl takes about 15 minutes to kick in if it's going to work.  20 minutes later I knew I was in big trouble.  My chest was tight, my tongue and skin was itchy and I felt like I was going to puke.  We made a quick exit to the car where I proceeded to throw up in the parking lot.  That's when I told mom there was no way we were making it home.  The hospital was 5 minutes away.  I don't think it took mom that long to get there.  Mom says she stuck her head in the door and told the nurse I was having anaphylaxis.  The nurse asked if mom could get me into a wheelchair, mom said she'd try.  Somehow I got into the wheelchair, mom got me through the first set of doors and the nurses descended.  Mom said there were 6 nurses and a doctor by my side before we got to the treatment room.  She went to move the car from the ambulance lane and they started working.  I was hooked to every monitor possible.  My initial stats were: O2 = 70% and dropping, pulse = 120 and rising, BP = going crazy, but mostly low (top number was below 80).   They shot me full of epi, benadryl, steriods and who knows what else.  I wasn't asking questions, I was just trying to stay alive. 6 hours later they were convinced I was stable enough for the hour trip home (with no hospital between the city and home), so we got home shortly after 4 am.  My arms are purple from elbow to finger tip from where they tried to start IVs.  Every time they'd hit a vein it would collapse because of low blood pressure and they'd have to try again.  Lots of bruising, but I'm alive and that's what counts.

Enough of the medical details. The other part of Thursday was a stop at the Christian bookstore in a little town near a place (I was paying really close attention as mommy drove...can't you tell?).  Mom was looking for books and cards for her grads, so I took some time to browse.  I found some ASL and baby ASL books and was browsing through them, when I found a book called: "On the Fence:  The Hidden World of the Hard of Hearing."  I started paging through it and realized it was a collection of short stories and poetry by people who are Hard of Hearing (HOH), about their experiences, their struggles, their joys.  I found it delightful.  When you are HOH you find that you don't fit in either world...you aren't deaf enough to be Deaf, but not hearing enough to be hearing.  You kind of get lost in between.  It can be a very lonely place, especially when you are my age and don't know very many HOH people your own age.  I eventually decided to buy the book and I devoured it. It was so great to read about people who understand what is like to go through life only hearing parts of it, to be the only one in class with hearing aids, to be lost anytime more than one person starts talking, to not remember what it's like to actually hear... If you want a better picture of what it's like to live in my world, I highly recommend it.  These people have a way with words and took time to tell the stories that I've never taken time to tell, but can relate to.  It's called: "On the Fence: The Hidden World of the Hard of Hearing" and the author/editor is Mark Drolsbaugh.  If you want to borrow my copy, let me know and I'll get it to you.

Otatop glaring at me cuz I woke him up from his nap to take his 3 hour old pictures.   He is white with brown markings, and yes, his mother is black.  His father was brown.  go figure.