Monday, April 30, 2012

Danny and Annie (like Carl and Ellie)

A couple of years ago, after I was released from the rehab hospital following a car accident that broke both of my knees and a bone in my hand, I discovered a radio show on public radio that came on the one time of the week that I was ever alone--Sunday morning when everyone else was at church.  It is called On Being (formerly Speaking of Faith), and has the tagline line that it 'is an in-depth conversation about religion, meaning, ethics and ideas'.

I really liked listening to the broadcasts, which were part religion, part sociology, part philosophy, and part psychology.  Some of the segments were a little out there, but for the most part it was very soul healing for me to be able to tune in each week and listen in on what someone else had to say about their take on life.  Sometimes it was irrelevant, but always interesting.

Now, with Harrison being sick and not being able to get out very often except for doctor appointments, I find myself at home again on most Sunday mornings.  Yesterday, I was able to hear the broadcast called 'Remembering Mortality'.  The host interviewed a man named Dr. Ira Byock, who was one of the first advocates for palliative and hospice care.  He was diagnosed with terminal cancer not too long ago, which added a whole new insight into end of life issues for him, including how important it is to make peace with your past if at all possible.  I jotted down a couple of quotes he said:

--"One person gets a diagnosis; a whole family gets an illness".

--"Forgiveness means giving up all hope of a better past"--quoting Lily Tomlin

The end of the broadcast included a recording of a couple as part of the StoryCorps project.  It was so sweet, and I almost made it through the entire story without tearing up.  Almost.  Well, today the onBeing Facebook page posted an animated version of their story.  I loved it and wanted to share it here.  It is about 5 minutes long.  Watch at your own risk, especially if you are wearing make-up.

Monday, April 9, 2012

How Will I Know If He Really Loves Me? -- GIVEAWAY

In the room next door to us, a little bitty patient is crying.  I don't guess she has realized yet to just suck it up and take her chemo and get her blood drawn and not fear the nurses like a good little girl.  Toddlers can be so self-absorbed.

I haven't laid eyes on this particular family yet, but I have heard them off and on for the past couple of days.  I've heard the little girl being sick, and the sound of the automatic paper dispenser on the other side of the wall.  I have heard the really good nurses talking them through it all.  And I just heard the daddy get really frustrated at another little kid that had come up to visit.

It is sad fact that illness doesn't just affect the person with the diagnosis.  Everyone involved is affected, especially family members.  In particular, other kids.  I have experienced the craziness of trying to take care of a child that will be an inpatient at the hospital for over half of this next year, while not neglecting my other two children.  It is a crazy balance, and one that I am probably not doing very well.  Like that poor daddy next door who has spent all night worrying about and taking care of one baby, I find myself about to snap at the most trivial, innocent things with the other two.

Anyway, I was right in the middle of trying to analyze our new normal in the context of what each child really needs from me right now, when I received a really neat book to review called The 5 Love Languages of Children, written by Gary Chapman and Ross Campbell.  I had read Chapman's original book, The 5 Love Languages, a long time ago, and was familiar with the idea of relating them to children, but I had not actually read anything as it specifically related to them.  So, this was another curiosity read, but one with another cool giveaway included.

The first part of the book was a thorough explanation of love languages, which is the idea that each person has a way that they are fine-tuned to give and express love.  In simplest terms, these are physical touch, words of affirmation, quality time, gifts, and acts of service.  The explanation was more than just switching out the word 'kids' for 'spouse'.  There was a firm grasp on the idea that kids are definitely wired differently than adults are.  Even though their love language may remain constant (although it could change over time), the ways they are best expressed and manifested are age level specific.  I got a lot more out of this section than I thought I would.  I had a pretty good idea going into it what the love language was for each of my kids, but the additional material and explanations were very helpful.

It was the next parts of the book that were the most informative for me.  The concept of discipline was discussed as it relates to love languages.  This totally makes sense, but was not something I had thought about before.  It was enlightening to see an explanation about why my own children respond so differently to the same discipline methods.  Practical recommendations were given for each love language, which were simple and helpful.

The book also explored how discipline and anger are interrelated.  The section on anger had so many good points and quotes that I could have highlighted, but here are a couple in particular that stood out:

How your child learns to handle anger will largely influence the development of his personal integrity, one of the most important aspects of character.  Train our child to manage anger appropriately and he will then be able to develop good character and strong integrity...This lack (of integrity) will critically affect the child's spiritual development; the less able a child is to deal with anger well, the more antagonistic will be his attitude toward authority, including the authority of God.  A child's immature handling of anger is a primary reason the child will reject the parent's spiritual values (page 163)

It is essential that the child learns how to handle anger in a mature fashion and grows out of the passive-aggressive stage.  If he does not, this behavior will become a permanent part of his character and personality for life, used against employers, spouse, children and friends...Because passive-aggressive behavior is the hidden source of most of life's worst difficulties, we as parents must train our children and teens to manage anger appropriately.  We can't discipline it out of them (pages 164 - 166)

And that daddy next door?  I have heard him tickling and laughing and loving on his kids today.  I guess he is learning that whole balance thing as well.

Sunday, April 8, 2012

Reflections on Easter and those Pink Vomit Buckets

Today is Easter, the one Sunday of the year that will have churches all over packed out with people in their pretty new clothes.  I tend to dress down as much as possible as a form of silent protest against the commercialism that this day has a tendency to reflect.  I guess I'm just a rebel that way.  I am most definitely dressed down this morning, wearing the same sweat pants, t-shirt and orthopedic shoes that I have had on since last night, which I guess is appropriate since I haven't had any sleep anyway.

Last night I pulled a rare all-nighter here at the hospital.  Usually my husband does those, but since he had to be at church before 6:00 this morning, we switched up a little.  We are now 5 days into this current course of chemo, and Harrison is feeling physically bad and mentally sad about being in the hospital for Easter.  This boy loves his God and he loves his church, and the whole injustice of this cancer thing is just driven further in on symbolic days like today.  He has missed very few church services in his life, and definitely none on Easter.  I haven't either, for that matter.

It is definitely surreal to be sitting here, listening to the sounds of the IV and the air conditioning vents and the baby next door that doesn't like being here, either.  Since I was already awake, I was able to watch the most beautiful sunrise.  I had Sandi Patty's song Was It a Morning Like This? running on a mental loop in my mind as I watched the subtle changes in the sky from the pull out bed, and was in my own little worship mode.

Then I heard a moan and a gag.

(For the uninitiated, a moan and a gag in this place means I have about 3 seconds to get up and get that pink bucket close enough to his mouth).

He doesn't really get sick too often during chemo, but it has happened enough now that we have a system and a routine to get through those next two or three minutes as quickly and as comfortably as possible.  Still, it isn't fun or peaceful for either one of us.  So, as we were in the middle of this morning's episode, I put the wet paper towels on his head and handed him tissues, and looked past his pale bald head out the same window I had just been peacefully looking out of just a couple of minutes earlier.  The sunrise was still just as beautiful, and God was still as good and loving, and the significance of Easter was still just as meaningful and prevalent in the middle of his dry heaves--maybe even more so.

I've always thought of that first Easter morning as so peaceful and so glorious and so beautiful, and in the grand scheme of things, it definitely was--in hindsight.  However, when those closest to Jesus woke up that morning, it was anything but that.  It was wretched and full of sorrow, guilt, and confusion.  One of those closest to him had already committed suicide for his part in it.  This morning, I couldn't help but think of the women in the Easter story.  The ones that were up at sunrise so they could go and take care of Jesus' body that was still covered in blood and dirt and sweat, and no telling what else.  And then when they got to the tomb, his body wasn't even there.  What a cruel shock that had to have been.  Of course, we know the rest of the story.  They did not.  Not yet, anyway.  All they knew was that they had a job to do, no matter how grimy or painful or stinky.

God reminded me that for today, this is my job, too.  Even though we won't be in a designated church building, we still get to worship.  Even though neither one of us is dressed nicely or scent free, we still get to worship.  Even though there will be no nice Easter meal for us, we still get to worship.  And even  though we are dealing with sickness and uncertainty, we still get to worship.  If our faith depended on easy living and smooth sailing, then we would be in a much tougher place right now.  I don't know what songs you sang in church today, or if you even went to church at all, but right now I have some old school tunes in my head:

My hope is built on nothing less, than Jesus' blood and righteousness.
I dare not trust the sweetest frame (including chemo or PET scans), but wholly lean on Jesus' name.
One Christ the solid rock I stand, all other ground is sinking sand.
All other ground is sinking sand.


Turn your eyes upon Jesus.  Look full in His wonderful face.
And the things of earth will grow strangely dim.
In the light of His glory and grace.

Just a Harrison footnote--
We have learned that when Harrison gets sick, it tends to follow a pattern, and we just work through it. This morning, though, about halfway through his usual progression, he suddenly stopped gagging and was done.  He looked up at me and weakly said, "Wow.  I just prayed and asked God to make it stop and it did".  Then he laid back down and has been asleep ever since.

That doesn't happen every time.  But that is where we are--accepting God's grace whenever and where ever we can find it.

You should try it sometime.  He's got plenty of that grace stuff for all of us.

Friday, April 6, 2012

Some Fridays are Gooder than Others

Today is Good Friday, the day that Christians recognize as the day Jesus was crucified on a Roman cross at the request of his fellow Jews.  It is a story that is a little difficult to place in the context of what the people involved must have been thinking or feeling at the time it happened.  People who celebrate this day now have the benefit of hindsight.  We know how it turned out.  None of those folks around then did know it, though.

I've been poking around the Internet today, looking for something that presents this story in a new way.  I decided on a presentation by the Skit Guys, who always do such a good job of putting stuff like this together.  This video is a little longer than usual--about 9 minutes--but if you have the time, it might just be  a good way to refocus on the meaning of the day.

Good Friday
Good Friday by the Skit Guys

Thursday, April 5, 2012

And I STILL miss Lorelai Gilmore

A quick newsfeed search this afternoon told me that last night was the series finale of the show One Tree Hill.  Since we are back in the hospital for a few days and I have hours of time to kill, I decided to find the episode online and watch it.

I first discovered OTH by accident, about 6 years ago now.  For some reason, I was flipping through the channels one night and caught most of an episode that was dealing with the aftermath of a high school student having released a video time capsule that no one thought they would ever see again.  As a result, one of the other students had brought a gun to school, fired some shots, and was holding some students hostage.  As a person who had worked with and taught teenagers for years, I was struck by the 'realness' of the episode.  I was sucked into their drama filled high school and felt something for those kids.

It turned out that this episode was probably the defining episode of the series.  It ended with the shooter committing suicide, and one of the main adult characters shooting and killing his older brother.  I was hooked.  Who were these characters, and what was their story?  These were the early days of Netflix, and when YouTube had full episodes available the next day, so I was able to catch up on the series pretty quickly.

I won't bore anyone with the details--either you know the show and its characters, or you don't and could care less about even finishing this post.  However, I thought Dan Scott was one of the most interesting TV characters I had ever seen.  He was a complete narcissist and a terrible husband and father (and obviously brother), and his scenes were the ones that interested me the most.  Why did he hate his brother?  Why was he so tough on one son and so negligent of the other?  Television drama at its finest most intriguing.  Sure, the teenagers had much more freedom than should ever be allowed, and some of the dialogue was definitely too introspective--although not as bad as Dawson's Creek--but I loved Lucas's voiceovers at the end.  Just call me cheesy that way.  I never could get my husband to watch it with me, but he happened to be passing through the room during that episode when that dog ate Dan's heart (I guess you had to be there), and thought it was WAY over the top.  But to me it was so fitting.  Anyway...

I pretty much stopped watching several seasons ago, after Lucas and Peyton left (I loved the dynamic between Lucas/Nate and Lucas/Haley).  It lost its appeal and life got too busy to watch much TV anymore.  So, I tuned in to that final episode this afternoon more out of curiosity than closure.  I am a huge fan of closure when TV series go off the air.  I still have issues with how The Pretender ended.  That show had WAY too much back story and I had invested way too many brain cells into trying to figure it all out, and they go and end it with a train explosion cliffhanger?  And Gilmore Girls was OK enough of an ending, but still a little sketchy.

So, this one today was one of the best series finales I have ever seen.  There was one story line that I knew nothing about, but the entire episode seemed like a shout out to old school fans and watchers.  One of the key stories was even referenced that first episode I ever saw.  The scenes and the music and the characters ended well.

I can definitely think of worse ways to waste an hour of time, especially when that chemo is dripping on down.

Monday, April 2, 2012

Let the Treatment Games Begin

One of the biggest pop culture events of the past week has been the movie Hunger Games.  I haven't seen it yet, but I did read the book last week out of curiosity.  The underlying premise of the book is that the country of Panem (formerly the United States until a civil war) now has almost absolute control of its citizens, resulting in dystopia.  It has led to many discussions in the social media world about how close we could actually be to allowing something like that to happen in real life.  Of course, much of it was scare tactic talk, but then I come across this story, and it has really gotten me to thinking.

Jacob Stieler is a 10 year old from Michigan who was treated for cancer last year.  After his initial courses of chemo and subsequent surgery to remove the cancerous areas, he and his family decided that he would not continue with additional chemotherapy.  This was after he gotten 2 PET scans showing no evidence of cancer.  The chemo was very tough, and they decided to keep up with regular screening, but not continue with the standard protocol unless the cancer returned.

I get this.  I would have gotten it even before my own child was diagnosed with cancer, but I totally get it now.  Chemo has its uses, but the side effects are very painful and scary and dangerous.  I am looking at my son right now who just happens to be sleeping in his hospital bed, but it is a fitful sleep, and when he wakes up he could be nauseated or in pain or have a new mouth sore, or he could just be grumpy.  The standard protocol of care (a fancy medical term) says that we will continue to do this for months, even after his surgery in a month and if he gets an all clear from his PET scan.  We have already been told that stopping treatment is not an option.  This was the day we checked in for the first chemo, and I just kept my mouth shut, because we were already resigned to chemo anyway, and it wasn't a philosophical battle I was willing to fight.  Not at that point, anyway.

Anyway, back to Jacob.  When his parents decided not to continue with treatment, even after the 'all clear' that parents pray for from the moment of diagnosis, they were turned over to their state Department of Human Services for child neglect, and have been repeatedly investigated and threatened to have Jacob removed from their home for failure to treat.  WHAT?!  I was an ER social worker back in the day--the one they called in the middle of the night to assess spiral fractures and cigarette burns and drunk 2 year olds.  THAT was legitimate.  THAT was abuse.  But this?  Attempting to force a family into medical treatment of any kind against their wishes under the threat of removal of their children from their home because they have decided that a cancer free kid doesn't need more poison?  THAT seems like abuse to me.

If the government agencies are so gung-ho about forcing medical treatment on unwilling participants, then maybe cancer families should get together and come up with our own version of Hunger Games. Some type of reality show where all the folks who insist on mandating treatment protocols and behaviors have to first participate in their own reality show.  Anyone who would sign off on forcing a person to receive chemo or radiation or any other such 'treatment' against their will would first have to survive the Treatment Games.  In this version, people who have either gone through cancer (or their family members) would be able to choose any and all medical procedures for the participants to experience.  They could have all manner of food and drinks available at any time, but they probably would not want them.  Just one of those pesky side effects of cancer treatment.  Any time they start to nod off, an IV would start beeping, and a nurse may or may not come in a timely manner.  Not that it matters--it will just go off a few minutes later anyway.

I guess this is just wishful thinking.  No one in their right minds would submit to that kind of torture.  I mean, it just doesn't make sense to give chemo treatments to people who don't have cancer, now does it?  Not even if they are given with the best of intentions, right?

And that is my point exactly.

Jacob's case is still unresolved.  I found out about his story and have been following it on Facebook (the page is called Hope for Jacob).  I am sure they would appreciate some encouragement if you get the chance and feel so inclined.