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?

Answered Prayer

A while back I wrote about how seemingly insignificant actions can have profound impacts on people, beyond what you can easily tell.  Today someone acted in a seemingly insignificant way and became an answer to prayer.
I was having a rough day.  I was having a go round with "sunburn syndrome", a condition in which it feels like my entire body is sunburnt, even though it is not.   I don't know why it happens to me, but it does and I hate it. ( It's very uncomfortable.  It's also sometimes called allodynia, for those of you who are curious).  I'd spend most the day on pain meds and benadryl (pain meds to take the edge off, benadryl to try and sleep it off), and was generally not feeling great.  The thought of going to the freezer to get something out for supper sound unimaginably painful.  I was wishing I could just order pizza or take out or something; anything that involved me not having to cook or open the freezer (cold is more painful that hot when I have sunburn syndrome). I was kinda down on myself and not even sure if I was even going to eat.
I left the house to deliver some mail to a neighbor that had erroneously been delivered to me.  As I was walking back I saw one of the neighborhood kiddos.  She waved at me and I waved back.  I followed her into the backyard and he mother invited me in for dinner. They were having the international students over to get to know them better.  She said right away that there was no pressure with the food (she wasn't expecting me and feeding me is just hard in general), but I was welcome to come visit.  I agreed and came in.  Sitting with other people is no more painful than sitting alone.  We went through the food and found some rice and fruit that I could eat, so I ate and I visited and played with the kiddos.  Afterwards, while I was helping clean up I told my friend she had been an answer to prayer.  She hadn't even known it.
G-d is good like that.
Now it's time to brave the shower and go to bed.
Good night all!

Question: What is your only comfort in Life and in Death?

Answer:  That I am not my own, but belong, body and soul, in life and in death, unto my faithful savior Jesus Christ.  He has fully payed for my sins with his precious blood and has set me free from the tyranny of the devil.  He also watches over me in such a way that not a hair can fall from my head without the will of my father in heaven...

It goes on, giving more comfort and hope, but that first section, the assurance that I am not my own, that I belong to some one greater than myself, that G-d is watching over me and that I am under his care, is my comfort, a lifeline of sorts.   It gives me the strength, on days like today, days after I have experienced great disappointment, days when I am hurting, it gives me the strength to keep going.  To remember that I am not my own, that this is not about me.  It gives me strength to get up in the morning, to go to class, to go to chapel, to keep worshiping G-d, even when I don't understand why things happen the way they do.  It's not about me.

As a side note, seizures and mono are a bad mix.  My spleen is not happy with this arrangement.  It's actually quite upset.

Old Ladies Who Pray

A couple weeks ago, in a setting which is not important, I heard someone say "G-d listens to old ladies who pray".  After some good natured teasing (I had a birthday coming up, so somehow I was perceived as "old"), I stopped to think about it some more.  It had been said in jest, but maybe there was some truth in it.  G-d  does listen to old ladies who pray. Think about some of the old ladies in your life and some of the prayers that they have been prayed that have been answered.  If your experience bears any similarity to mine, you will find that the prayers of old ladies are answered. What is it about old ladies that causes G-d to answer their prayers? 
Is it just because they are old and G-d listens to them out of respect for the years they have served Him, the time they have put in on this broken earth or is there something more to it?  Perhaps it is because our grandmothers grew up believing that G-d would answer their prayers.  Our faith has become watered down.  

When we pray we are fond of saying "If it be your will…."  I'm not sure this actually appears in the Bible, though there is likely a similar concept that has been pulled out of context (and I could be completely wrong on this). I mean, it's good to let G-d have His way, but if it was just about G-d having His way, there would be no purpose to our praying.  Check out these verse from Matthew 18: 18-20:

 "Truly I tell you, whatever you bind on earth will be bound in heaven, and whatever you loose on earth will be loosed in heaven. Again, truly I tell you, if two of you agree on earth about anything you ask, it will be done for you by my Father in heaven.For where two or three are gathered in my name, I am there among them."

Go ahead and read it again.  This isn't suggesting an "if it be your will let Grandpa get better" kind of prayer, but a kind of prayer that claims healing, a prayer that acknowledges the power that we have as believes.  "whatever we bind on hear will be bound in heaven".  What would happen if G-d's people really started praying in faith?  What kind of radical changes would our world see?  

Over the summer a dear friend of mine sent me a magazine article called "Diagnosis Cancelled".  It appears to have come from a magazine called "Gospel Truth", from the spring and summer 2010 edition.  Anyhow, the article tells of a husband and wife who discover that they are pregnant with an infant that, according to the ultrasound, has severe Down Syndrome and might not even survive being born due to deformities of his heart.  The parents refuse to accept this diagnosis.  This wasn't a case of denial, but a case of claiming the power they knew they had.  They refused to accept that their child had Down's.  The prayed and prayed and prayed, cancelling the diagnosis, refusing to let Satan poison them with doubt that their baby would not be healed.  Well, they went back for another ultrasound a time later and the ultrasound was clear.  The doctor didn't understand.  When the precious little one was born he was perfect.  There is a bit more to the story, but that's the gist of it.  They prayed in faith, the cancelled the diagnosis on earth and it was cancelled in heaven.  

Yes, sometimes G-d has plans that are beyond what we can comprehend.  Sometimes we pray earnestly for things and G-d choses to answer with a "no" instead of the "yes we had hoped for.  It's important to remember that He is still G-d and He is still sovereign, but that doesn't make us puppets.  If we truly seek the will of G-d and pray in faith, He will grant us the desires of our hearts (Ps. 37:4, James 5:13-20, esp 16b-18).

What would happen if G-d's people prayed in faith?  Casting Crowns sings: 

"What if the Church, for heaven's sake
Finally stepped up to the plate

Took a stand upon God's promise

And stormed hell's rusty gates"

What if? What if? What if?

And since I started this off with old ladies who pray, here is a song to finish it off, about a praying Grandma: Smooth Grandmama. (The video isn't captioned.  Here is a link to the lyrics)

Would You Rather...?

There is a game that is often played as an icebreaker or just a way to pass the time called "would you rather...?" in which participants are asked a question in the form of "would you rather option a or option b?" and are forced to choose and option.  The questions can cover a wide range of topics and answers can be easy (would you rather eat chocolate or vanilla ice cream once a day?) or more difficult (would you rather have just one close friend or 10 friends who weren't as close?) depending on the purpose.  They can also be outright silly/gross (would you rather have no bladder control or no bowel control?)...the silly/gross ones often come out when you are playing with pre-teen boys...something in the age I think.
Anyhow, the other night while I was making supper the boys decided that I was either lactating chicken or a dairy goat that laid eggs.  They couldn't decide which.  (Their reasoning was that I had to be one or the other because I "make eggs" using egg replacer and water for baking due to a severe egg allergy and I make the milk for our bottle babies.) After we got done laughing I started thinking more seriously about the question. (this is a definite sign that I need to be back in school!)  Being a goat has definite advantages.  Goats are cute.  See how cute Jumper and Josie are?

But chickens give you cute baby chicks.  See how adorable the baby chick is?

There are also definite disadvantages to being both a goat and a chicken.  Goats eat garbage.  Chickens can't really do much...most can't even fly.  The more I thought on it, the more it became clear to me that there really wasn't a better choice between the two.  It didn't really matter if I was lactating chicken or a dairy goat that laid eggs.  That wouldn't change who I was, so there had to be a reason why I was stuck on this questions.
So I thought more about.  I tried to ignore option A and option B and focus on the form of the question.
What "would you rather" situation was I getting stuck in?  It didn't take me long to come up with the answer...Would I rather things stay the same or change? Would I rather stick with what I know or step out in faith?    The answer to this question really does matter, it matters much more than my answer to the lactating chicken/egg laying goat question.  Its a question between growing stagnant and being fresh, it's a question that I have to answer for myself, and a question that you have to answer for yourself.  Would I rather stick with what I know?  Sometimes I think it would be nice, but I'll never know what I'm missing if I don't step out in faith.
So my answer:  I'd rather be an egg laying diary goat who steps out in faith to embrace change, even though it terrifies me.

Community

Over the last few weeks I've had a number of conversations with people about what it means to do life together/live in community. These people have had a variety of life experiences and various amounts of life experiences, so I was able to get some different perspectives. 
It seems to me that there are certain times/places where a sense of community is much stronger than others.  Mission trips, conferences, and retreats are all places where a strong sense of Christian community tends to prevail.  Central college was also a place where I really felt a sense of community.  At school we were really doing life together.  We laughed together, cried together, prayed together, worshiped together, played together, etc, etc, etc.  We had a real sense that we were the body of Christ and we were all part of it.  If one of us was hurting, all of us felt the pain.  When one of us rejoiced, we all rejoiced.  I think many people have had experiences like that and I was very blessed to be able to live in that kind of community for 4 years. Now I miss it and I keep asking why that kind of community can't exist elsewhere.
It's true that some environments (such as mission trips, retreats, conferences) act as a sort of incubator for spiritual growth and foster a sense of community, but why can't we have that kind of community outside of the incubator?  Some one (potentially more than one someone) told me it was because real life got in the way. At first I accepted that, but then I thought about it more.  Is it just because life gets in the way or is it because we don't expect to be able to live in that kind of community?
Central might not have been the same as "real life" (whatever that is), but it wasn't an incubator either.  We had very real struggles that we dealt with.  We had a classmate die this year. We had classmates diagnosed with serious illnesses, classmates with serious family struggles, classmates who didn't know how they were going to pay tuition of the next semester or how they were going to afford books, or gas in their car to get home, classmates struggling to discern the next step, whether they should continue education or if they were being called elses, classmates getting married, classmates breaking up...you name it, we probably dealt with it.  If that's not real life, I don't know what is.  Yet through it all, we were together as a Christian community, supporting each other, being excited about Jesus together.  Christianity wasn't a Sunday morning deal, it was a 25 hours a day, 8 days a week kind of thing.
Reflecting on that, I think that part of the reason we don't live in that kind of community all the time is because we don't expect to or make the effort to. I wonder how life would be different if we were intentional about living in community. Outside of college, where we all live at different places, it's a little tougher to be intentional.  I can't just walk upstairs and pray with some when I'm at home, or go down the hall and have a life chat with a friend. Often I don't get to eat my meals with a dozen other people or worship multiple times a week with the community.  I'm thankful for the ways I can still be connected to the community though.  The internet is a great tool for that and I love the conversations that I have during the week with my Central friends, the ones where we talk serious about what G-d is doing in our lives.  I cherish the time that I do get to spend face to face with people here and the conversations we have.  I long for place where I can be real face to face, a place where I can be engaged in Bible study and prayer and supporting others and being supported by others.  The tricky part is, I'm only home for three months out of the year, so I can't really expect things like that to be part of life here.
So for now, I cherish what I do have and wonder at how things could be different and why things are they way they are.

A band-aid will never fix it all the way.

So, it's Monday night and I just finished my 5th class of the day.  One class was cancelled due to weather, so technically it was a "light Monday".  In reality, I should be getting ready for bed, taking some tylenol and snuggling up with my heating pad to try and relax some very sore muscles (lots of muscle spasms and seizures the past few days/week).  What I would love to do is put my life jacket on and get in a nice heated therapy pool and so some basic stretching, ROM, and relaxation stuff, but Pella doesn't have a heated thereapy pool, and even if they did, it would not be open at this time of night.  So Arnica, Tylenol and a heating pad will have to do.  But before that, I need to write. 
Every week we have to write a reflection paper for my night class on the speaker and whatever reading has been assigned.  This by no means will represent my final paper, but something was said tonight that I have to process and I wanted to share it with all of you.  As I said, it is late and I'm post-seizure, so coherence might be lacking.  Bear with me.
The speaker tonight was the local hospital chaplain so we were discussing things related to being a hospital chaplain and issues related to that.  (This is the same chaplain who came to see me last fall after my first seizure when things were looking really bad.  I don't know if he remembered me).  Towards the end of the class, I finally asked the question that has been on my mind a lot.  "What do you do with the questions: "Why me?" and "Why does G-d let bad things happen to good people?" and the like?"
I know that I asked those questions when he visited me in the hospital, but I have no memory of what he said.
He paused. And answered with a question of his own.  "What is really behind that question?".  As a group we generated some answers. A sampling includes: "Did I do something to cause this?"  "Is G-d really good?"  "If G-d is good, why is this happening?"
We sat with those questions for awhile and then he spoke again.  He told us that there was no easy answer and that there was a lot of hurt behind those questions.  Then he talked about the dangers of giving an easy answer. He drew an analogy that really hit home with me. 
When you have a deep wound, one that goes deeper than the surface, it is important to make sure it heals from the inside out.  Deep wounds are not simple bandaged, but rather, they are cleaned out and then packed full of stuff (and by stuff I mean mostly sterile dressing material). This keeps the outside from healing over before the inside has healed.  In some cases, if a wound is not packed properly, the outside heals before the inside and the inside fills with fluid and infection and tons of junk.  Then the doctor has to go in and cut it open (lance it) and let the healing start all over again (if it is not lanced it sometimes just bursts on its own after the pressure has built up inside). This is much more painful than giving it time to heal properly the first time.
Life is like that.  Some hurts run really really deep. Sometimes you just want to put a "bandage" on the hurt and when the outside looks good, you figure it is healed.  But it's not.  The real hurt is just festering underneath and someday, it will burst out. And it will hurt.
Healing deep hurt is hard. It takes time.  It takes work. It takes time. It's not a quick fix. And the outside is going to look messy for awhile.  You could go for a bandaid solution and the outside will look neat, for awhile.  Then the hurt will fester and burst out.  And then you have two choices:  Another bandaid or working deep and hard to heal the hurt. The hard work will be scary.  It will mean being vulnerable.  It will hurt. It will take a lot longer than just sticking a band-aid on it.  But it will be worth in in the end. And we don't do the work of healing alone.  We've got Jesus to help us.  Healing is kind of his thing.  He does a lot of it. And he never just settles for a band-aid.

A bandaid will never fix it all the way.

Through the Roof

I returned home from the hospital yesterday with some news that is both good and disappointing at the same time.  The good news is that they did not find anything on my EEG or ECG while I was in the hospital.  The disappointing news is that they did not find anything on my EEG or ECG while I was in the hospital.    Having a clean EEG and ECG is a good thing because it means there is nothing wrong with my brain or heart.  It's disappointing because it means the doctors have no idea what is wrong with me.  We have no more answers than we did when I went in to hospital a week ago.  The diagnosis that has been applied to me is "psychogenic non-epilipetic seizures" or PNES. 
Dr. B (my neurologist) and Dr. D (the psychiatrist) told me that in about 50% of people with PNES the seizures are a manifestation of depression or anxiety, however, neither Dr. B nor Dr. D see any signs of depression or anxiety in me. A conclusion with which I agree. This means that I’m in the other 50%. This 50% is the category of people for which medical professionals have no answers at all. Many cases of PNES will disappear on their own. The others persist. There is no known reason why some cases disappear and others linger. There is also no projected time frame.

All this basically means we are at a dead end as far as the seizures go.  There is no next step at this point.  Being completely honest, it is hard not to be discouraged at this.  It's hard to focus on the positive.   While I was in the shower this morning, trying yet again to get the EEG glue out of my hair (nasty stuff) I was reflecting on this "dead end" and praying about it.  G-d brought a story to my mind.  It's from Luke 5: 17-26.  The part that really stood out to me was verses 17-19.   For those of you unfamiliar with the story it is about this man who was paralyzed since birth.  He had never been able to walk.  He had some awesome friends who heard that Jesus was in the neighborhood.  They decided to take him to see Jesus so that Jesus could heal him.  They wanted their answers.  They wanted the problem fixed.  They carried him to Jesus, however when they got to the house where Jesus was teaching they couldn't get to Him.  There were too many people between them and Jesus, their hope.  I can't know exactly what was going through their heads when their way was blocked, but I imagine that they weren't overly impressed.  This was not how things were supposed to go.   Mark 2 tells us that there were at least 4 men carrying the paralyzed men.  I imagine that at least one of them was ready to give up.  There were just too many obstacles.  Then one of them got an idea.  What if they went up on the roof, took it apart and lowered their friend in, through the roof?   It's a crazy idea.  This is probably a stranger's house and they are going to go up, on the roof and take it apart.  I wonder how long it took him to convince the others that this was a good idea, their only chance.  He must of been convincing because we know that they did go on the roof, take it apart and lower their friend in.  Luke tells us that Jesus was "saw their faith" and as a result, healed the paralyzed man. 
These men were looking at tough situation, one that wasn't going the way they wanted it to go or the way they thought it should.  They most likely did not leave home that morning with the intention of taking apart a roof and lowering their friend through it.  It wasn't conventional.  It was a crazy idea that took a lot of faith.  It was a crazy idea that was a perfect part of G-d's plan (Jesus used this situation to express His authority. see verses 20-24). 

The conventional and ordinary plan was for me to go to the hospital and for the doctors to figure out what was wrong with me and fix it.   However, this wasn't G-d's plan.  Somewhere there is a roof that I need to go through.   G-d's got a plan for this that is bigger than the conventional, easy plan and He's going to be glorified through it.  After Jesus healed the paralyzed man "Everyone was amazed and gave praise to G-d. They were filled with awe and said, "We have seen remarkable things today."" (Luke 5:26). 
I don't know where or what my roof is, but I do know that I have amazing friends who will journey with me and I know that I have an amazing G-d who has a plan for all of this.   Who's coming through the roof with me?

As a side note, at a prayer meeting before semester break, someone spoke this story over me as a word from G-d intended for me. I didn't understand at the time, but I do now.  G-d has had this planned way long ago.   "All the days ordained for me were written in [G-d's] book before one of them came to be." Psalm 139:16