July 30, 2009 by Rieshy
Personal Boundaries?  Personally, mothering seems to be all about constantly shifting boundaries.  But perhaps that is using the wrong definition for the word.  Do healthy personal boundaries change according to circumstance or according to the seasons in one's life?  Or does our ability/inability to maintain healthy boundaries tend to be fairly constant and is merely revealed during stressful seasons?

I've never liked saying no, no often fills me with guilt even when guilt is inappropriate.  I know that I have to say no to almost all commitments other than my family right now.  Jack can't travel and if he comes down with any common illness it can be life-threatening.  His longest hospitalization was because of a simple ear infection that sent his body into a metabolic tailspin.  This no saying has not been easy for me -So I'm thinking that maybe the reasons for our personal limits change with the seasons of life but the ability to handle the changes in our seasons of life is tied to our ability to set boundaries.  Boundary setting transcends circumstances?  

My friend Kathy recently shared with me some notes she had from a talk given by another friend, Janina Tiner on the topic of boundaries.  Janina told me that she based some of her talk on  Boundaries: When to Say Yes, How to Say No to Take .... by Cloud and Townsend.  With Janina's permission I thought I'd share some of the notes- the parts I understood anyway:)  I wish I had gotten to hear Janina talk.

What a boundary is and what it is not

A boundary is not a threat.
A boundary is something that I do for myself regardless of what you do.
A boundary is not about you changing.
A boundary is about protecting and respecting myself.
We set boundaries to teach others how to treat us.
It is especially important to distinguish between a healthy boundary and a wall.
One of the hardest things to accept about boundaries is that boundaries aren't fair.
We must accept total responsibility for maintaining our boundaries.

Some Good Rules In Boundary Setting

"No" is a complete sentence. (I laughed when I read this.)
Just because a question has been asked does not mean that you have to answer it. 
Just because someone phones, does not mean that you have to answer it.
Most people have an internal clock that determines the amount of time they need in order to process an question or request.  Know yours and be true to it.
Self-Care is NOT Self-ish.
Put your hands down and let God be your Defender.
When we do something for someone else (without seeking their direct permission) who is capable of doing it for themselves, then we have violated a boundary.
When we want something more for someone else than they want it for themselves, then we have moved into control and have violated a boundary.
When I am in FEAR and move into CONTROL, I have essentially set myself up to be retaliated against.

Letting Go

July 28, 2009 by Rieshy
Several things are spinning around in my head right now: 

When I was 15 my family lived in down-town Vienna, Austria for a year.  The freedom I had because of the amazing public transportation was... remarkable.  Coming back to the States was... hard.  I'm thinking a lot about my son's last week on his adventure in Guatemala.  I'm thinking about how weird it is going to be for him to adjust to being back home and sharing a room with siblings.  He loves us and will be happy to be home, but we will be something of a let down.  In 17 1/2 years of mothering I've moved from being the center of the universe to being a let down, though to be honest, I'm glad.  For one, I don't have a basement he can move into.

I'm also thinking about the other end of my parenting spectrum.  Jack has been wanting to hold the glucometer himself.  I've not been encouraging it until today.  I realized he's going to have to eventually take care of himself.  He might outgrow the hypoglycemia but he might not, so I need to let him hold the silly glucometer.  I also need to teach him the names of his medications and how much he needs of each.  It's not rocket science.

With kids ranging from 17 to 1 1/2 it's hard to keep a handle on slowly letting go of everyone at all their different levels.   However, Samuel's bid for independence will be nipped in the bud.   He's figured how to get the child safety door knob off the front door and let himself out of the house.  I'm pretty sure that's a bad thing.  At least he can't (yet) get the car key in the car door.


July 27, 2009 by Rieshy
Gum chewing used to be outlawed in our family because my husband was a museum curator.  He hates gum.  He still thinks it is revolting.  However...

Jack used to drool, a lot, all the time.  It's o.k. as an infant, not so o.k. as a toddler, really not o.k. as a young child.  Jack's drooling is just part and parcel of low tone and low energy from FOD.

The combo of frequent high carbs and his carnitine and MCT oil have really helped.  However, drinking with a straw and gum chewing are what really developed his oral muscles.  We now chew gum a lot.  Though out of respect to my husband we make herculean efforts not to let gum go anywhere but well-wrapped in a tissue and into the kitchen trash.

At church last night, the young children were called forward to sit on the front stage and listen to a short sermonette, sing a couple of songs and then receive a sermon-sucker (a.k.a lollypop) for their efforts.  The suckers are why my littles like to go forward.

All the kids were quietly lining up as the speaker handed the suckers out.  Except Jack.  He stood up on the stage and hollered, "Mom, I need to spit out my gum!" Then he jumped off the stage and ran down the aisle loudly repeating his need to spit out his gum.  I'm holding a cranky 18 mos old while desperately searching for a spare tissue.

Too late, Jack reached me already making a spitty sort of face.  What's a Mom to do?  I held out my hand and he spit his gum into my palm.  Back up the aisle he ran, just in time to get the last sucker.

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E.S. and Suffering

July 26, 2009 by Rieshy
I drove around the world the last two days.  It felt like I circumnavigated the globe at least once at any rate.  So many different types of errands, phone calls, paperwork, and driving trips. One trip was to Nashville for Jack to have some blood work done at Vanderbilt Children's.  We ended up eating in the food court after picking up paperwork and before having the labs drawn.  Jack needed the carbs Before the stress of the blood draw.  

Vanderbilt's food court is a people watching extravaganza.  Such a strange place to be.  Nice to be there without having Jack sick and tethered to an I.V. stand.  Nice to be there with the expectation of leaving after a quick lab.  The parents that look tired and have mismatched clothes on, or borrowed scrubs, the parents that won't make eye contact because all their energy is going into not crying- those are the parents that I wish I could hug.  But being a non-demonstrative type myself that's a big stretch to imagine.  In fact I'm pretty sure if a stranger came up to hug me in a food court I'd probably think they were trying to steal my purse. 

Jack noticed a couple of new paintings, touched all his favorite sculptures.  He actually asked me who painted one of the new paintings.  I never thought I'd have a child so familiar with a hospital, but bless whoever raised the funds to add public art.  I don't mean a vague, "bless their hearts".  I mean I hope God Blesses them!  The train display is always the treat/bribery we save for when we are leaving.  I wonder if the train buffs who built it really understand what it means for the kids who spend way too much time up there?

In the car Greg and I had a conversation about Fools and Suffering.  Think along these lines; Does it count as suffering, with the accompanying scriptural promises of support, if your personal "hard times" are a result of your own stupidity? 

 I've heard people recently talking about the recession and the problem of the skyrocketing foreclosure rate with almost a gleeful air of; "serves people right to lose their homes if they were stupid/arrogant/greedy...."  I've heard people talk about illness in the same way.  "She has cancer, but she smoked for all those years...."  As if to say, she's getting what she deserves so don't be too concerned about her suffering.   When people used to ask me about my mother's illness I always told them that, "she has Primary Pulmonary Hypertension, but she never took Fen-Phen."  Did that mean I thought that people who did take Fen-Phen didn't deserve as much sympathy?

Many of the passages about suffering in the Bible deal with enduring hardships caused by religious persecution, or with suffering caused by sin in the world.  But what of sheer stupidity?  What if you've overdrawn your checking account because you paid the bills but forgot to deposit your paycheck first- and now you have so many overdraft charges your already stretched paycheck won't cover it all?  (Btw Greg, purely hypothetical)  That can cause "suffering" especially if you have medications to buy that you no longer have the money to cover.  It's not righteous suffering, it's embarrassing suffering, or E.S.  

Personally Greg and I agreed that we have a lot of E.S. in our lives.  Big surprise, two mathematically challenged art majors got married and had a large family and run a business... Because we have a lot of E.S. in our lives we are extremely thankful for a merciful God.  Personally I think I'll run with, "Rejoice with those who rejoice, weep with those who weep." -Romans 12: 15  and "Do not judge, so that you may not be judged.  For with the judgement you make you will be judged, and the measure you give will be the measure you get." -Matthew 7:1-2

Schedules and Stirring

July 25, 2009 by Rieshy
I'm sitting here surrounded by train track.  The Train Track was picked up last night at least twice.  However, it was not put under armed guard and stored secretively in the toy closet.  At some point Samuel hijacked the container and re-stirred it out onto the floor, without me noticing.  

Everything within climbing distance in my home is picked up and redeposited elsewhere, all day long.  Thus a full household Stirring occurs every 6 hours. I think that should be the official job description of toddlers,  Stirrers. 

I'm getting ready to start thinking about, thinking about school starting again.  I've got to get back on a schedule of sorts.  The older kids and I had a steering committee meeting about our schedule for the rest of the summer. Kind of a "Flylady" meets "Managers Of  Their Homes" moment.  Hopefully the kids all felt like they got the jobs they like best -or at least dislike the least.  We'll see.

The only really strict schedule we have right now is posted on the fridge to be used for Hospital Days.  It's been worth it's weight in gold.  We don't have family in town, and let's face it, the ordinary civilian is not equipped to invite 6 children over.  So when Jack is in the hospital the kids have detailed job assignments and a schedule to give structure and during the school year to keep the school work moving.  Our own personal "No Child Left Behind".

Oh, lovely.  Samuel and Jack just brought me a stack of clean cups from the dishwasher.


July 21, 2009 by Rieshy
I'm sitting in a lovely and cool, though admittedly, messy house with coffee and dark chocolate.  My 17 yo is in Guatemala learning Spanish.  My 15 yo is gleefully out working for actual moolah. My 13 yo is practicing a gorgeous piano piece from the movie "Pride and Prejudice".  My 10 yo is reading while the two babies nap.  My 7 yo son is in the garage building something manly with my husband.  It's a rare time of quiet and peaceful productivity.  So why (besides the possible excess of caffeine and sugar) am I fairly jumping out of my skin with discontentment?

For starters; A pox on all physicians who mention possibilities of new diseases for your child, run tests, and then Neglect To Call You Back When They Say They Will.

A pox on 17 yo's who take you at your word when you tell them to have a good time and study hard and subsequently they are too busy to email you with status updates.

A pox on freelance-work and the difficulty it causes for long-range financial planning.

A pox on a dear friend's health issues and the uncertainty it's causing her.

I want to blame all these things for my discontent and for my anxiety.  If only I had information!  In reality I am discontent because I'm discontent.  I don't want to need the information that I'm waiting for, not from Jack's doctor, not from my son Luke, the bookkeeper, or my friend's doctor.  I want Jack and my friend perfectly healed, I want my 17 yo's entire future life (successful of course) emailed to me in PDF format, and I want a trust fund account in my name discovered in the bottom of my desk drawer.  I might as well add that I'd like a gorgeous singing voice and an exemption from the effects of time and gravity on my figure.

It's doubtful that such an attitude could be in any way more opposed to the attitude that Christ expresses, "Pray then in this way: Our Father in heaven, hallowed by your name, Your kingdom come.  Your will be done, on earth as it is in heaven.  Give us this day our daily bread. And forgive us our debts, as we also have forgiven our debtors.  And do not bring us to the time of trial, but rescue us from the evil one." -Matthew 6:9 (bold added for emphasis)

This prayer seems to hold the answer to how Paul could say, "... In any and all circumstances I have learned the secret of being well-fed and of going hungry , of having plenty and of being in need." -Philippians 4:12

I can choose to ignore all the beauty and blessings around me and rail that the Creator of the Universe has disappointed me with his time-table for my life or I can;  "... not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. -Philippians 4:6

Peace of God versus discontent and anxiety?  Easy, to see in print.  A no-brainer if ever there was one, but to be totally honest sometimes it's hard for me to choose.  
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A Short Tirade

July 20, 2009 by Rieshy
I took Jack to a Pediatric Gastroenterologist (try to say that 5 times fast) today.  As I'm checking in here is the exchange:

Secretary, "I just need you to sign a few papers."

Me, "Sure"

Secretary, "Just sign your name there."  She points to an electronic signature pad with a blank screen.

Me, "Uh, what am I signing?"

Secretary, "Oh, you are signing a form that gives us permission to treat your son and get records from his other doctors."

Me, "But this screen is blank."

Secretary, "The paper you are signing is this (she holds up a 3 page document).  You can read it if you want."

Me, "But how do I know that is what I am signing?"

Secretary, "Because here is the document."  She again waves the 3 page document in the air.

Me, "But, why don't I sign the document itself?"

Secretary with a large sigh- and a patient voice one normally uses with kindergartners, "I need your electronic signature so I can print it out on the document.  It's just your signature.  When you sign the pad it prints it on the correct document."

Me, standing there flummoxed.  

Am I the only person who finds this absurd?  Luckily, before I got sent to the principal's office for noncompliance, the office manager walked over and handed me the document to sign with (gasp) an ink pen.

I try to play nicely with others, really I do.  


Big Questions

by Rieshy

Sam's question-  "Does every one of these taste the same?"
Mom's question- "Can I wash these off and still use them?"

Sam's question- "What would this large and heavy piece of furniture look like if I knocked it over?"
Mom's question-  "Who keeps doing this!?"

Sam's question-  "I am in blanket time.  I do not feel that this is a profitable use of my time.  I will release myself on my own recognizance.  I wonder what will happen?"
Mom's question-  "Who put Sam's blanket away and... oh... Where Is Samuel!?"

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Old Papers- Part 3

July 18, 2009 by Rieshy
Here's another installment of my mom's old notes for her series on Suffering:

Suffering; What Am I Going To Do About It?

We have an example of Christ's suffering in 1 Peter 2:21 "... since Christ also suffered for you, leaving you an example to follow in His steps.  He committed no sin nor was any deceit found in His mouth.  And while being reviled, He did not revile in return, while suffering, He uttered no threats but kept entrusting Himself to Him who judges righteously; and He Himself bore our sins in His body on the cross that we might die to sins and live to righteousness; for by His wounds you were healed."

What do we see Jesus doing here:
1. He suffered.
2. He suffered wrongly. (wasn't His sin)
3. He sinned not... before punishment, during or after.
4. He was willing to "hurt, suffer" so that we might not have to face the final death.
5. He entrusted Himself to God.

When faced with suffering, we have the choice to:
1. Rail against the suffering.  By saying, Why me?  I don't deserve this.  Complain very loudly.
2. Use the suffering to God's Glory.  Entrust myself to God.
3. Look for the good... the treasure- the Joy.

II Corinthians 1:3  "Blessed be the God & Father of our Lord Jesus Christ, the Father of mercies and God of all our comforts who comforts us in all our afflictions so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."

When this passage was pointed out to me I wanted to say, "Well, just wait a minute.  Let's just stop this domino action.  Get me out of line.  God won't need those kind of comforters if there was nothing to be comforted about."

But it is a sinful world and sin caused that chain of death.  WE do need comforters.  And my husband and I have been able to share the comfort we received.  Too often we don't want God to teach us how to deal with a situation.  We just want God to get us out of the situation.

Paul made a list of his sufferings.  II Corinthians 11:23  "... with greater labors, far more imprisonments, with countless beatings, and often near death.  Five times I have received at the hands of the Jews the forty lashes less one.  Three times I have been beaten with rods; once I was stoned.  Three times I have been shipwrecked; a night and a day I have been adrift at sea; on frequent journeys , in danger from rivers, danger from robbers, danger from my own people, danger from the Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brethren; in toil and hardship, through many a sleepless night, in hunger and thirst , often without food, in cold and exposure."

Why did Paul give us a list?  One reason could be for us to have an example of one who endured and was comforted.  He says it was the power of Christ who enabled him to endure and that he endured all this with Joy.  His whole life from the events on the Road to Damascus was lived for Christ.  So his sufferings were not wasted.  They were dedicated to God also.

Jesus certainly used an illustration we women can identify with in John 16:20 "... your sorrow will turn into joy.  When a woman is in travail she has sorrow, because her hour has come; but when she is delivered of the child, she no longer remembers the anguish, for joy that a child is born into the world.  So you have sorrow now, but I will see you again and your hearts will rejoice, and no one will take your joy from you."

I told you we had 4 children.  My memory must have not been good.  I didn't remember how bad it was.  Doesn't that say something about it all being worth while, worth some treasure?  I even encouraged my daughter to go thru the birthing process and we have 2 precious grandchildren.

It comes down to attitude.

I will live for God in good times and bad.  My Lord is aware of all my conditions and I will give over to Him my successes and my joys.  I also give over to Him the bad things that I am so bold as to call suffering.  It is all His, as I am.  Every single thing I do is being done for God.  My life is dedicated to Him.  Even the sufferings.  I am not going to waste anything.

Glamour Don'ts

July 16, 2009 by Rieshy
What happens when you make a series of illogical decisions?  The condensed version:

Poor choice #1  My husband and I stopped walking regularly when Jack was first diagnosed.

Poor choice #2  I went on the high-carbohydrate and frequent snacking diet prescribed for Jack.

Poor choice #3  I gained weight and decided a hair cut would solve my problem.

Poor choice #4 When I sat down at the stylist's and saw that she had teased hair and a photo of Fabio hugging her I didn't leave.

Poor choice #5 I decided coloring my bad hair cut at home would help.


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Small Griefs

July 15, 2009 by Rieshy
"And grief still feels like fear.  Perhaps, more strictly, like suspense.  Or like waiting; just hanging about waiting for something to happen.  It gives life a permanently provisional feeling.  It doesn't seem worth starting anything.  I can't settle down.  I yawn, I fidget, I smoke too much.  Up till this I always had too little time.  Now there is nothing but time.  Almost pure time, empty  successiveness."  

-C.S. Lewis in A Grief Observed

I thought this was an amazingly apt and succinct description of grief.  What I didn't know until this past year is how you can be surprised by grief, horrible pun intended.  My son didn't die last Summer but my illusion of his health died.

Deep down my husband and I knew something was not right with Jack since his birth, but we had not been forced to face it until the morning of his "crash".  What followed was a series of little deaths as we learned more and more about his condition and how it would change our daily life, culminating 10 months later with the news that Samuel was also affected, though blessedly not to the same extent.  It's been a long year.

My sister, Kay, was the one who clued me in on the grief issue.  I kept thinking that I was just ungrateful and weak and sleep deprived.  I was sleep deprived, but also too submerged in doctor's visits and test results to realize what was really wrong.  Somehow knowing that I was mourning and what I was mourning made it easier.

Lately I've been restarting projects, picking up where I left off and branching out starting new things.  Once again the days have too little time to do all I have in mind.

This is our little guy, Samuel, from last fall.  He's always a good excuse to smile.

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"For God did not give us a spirit of cowardice..."

July 13, 2009 by Rieshy

2 Timothy 1:7

I can hear the rhythmic breathing of my 3 year old.  Smell his warm skin next to me, feel his heel kick me in the stomach.  He's gotten in bed with us again.  

I feel I should carry him back to his bed but I'm too sleepy to get up, and it is so comforting to have him there.  Until he kicks me in his sleep for the 3rd time and steals my pillow.  Not to mention lying between my husband and my 3 year old is like lying between two electric heaters going full blast.  I scoop him up and redeposit him in his bed.  He doesn't wake up, merely snuggles down into his own pillow.  

I get back in bed.  An hour later I hear a cry.  It's not the 3 yo but the 18 mos old.  He is standing in the corner of his room inexplicably holding a nerf gun bullet and a piece of paper.  I scoop him back into his bed, pry the objects out of his hands and lay next to him for a while.  He smells different than the 3 year old but still warm and sweet and round.  He too generates a lot of heat.  I head back to bed.

I'd love to regularly sleep all night without interruption.  Occasionally, when everyone is well,  I get to.  It's always a treat.  However it is not without cost.  When I wake up and realize that I've slept all night there is the long walk to the boy's room to check on the "Littles".  

Anyone who has had an ill loved-one can surely relate.   Will the curve of their back be rising and falling? Will the bedroom be filled with the soft sounds of sleep?  Will they be alive? Before the bedroom door is opened my husband says it reminds him of Schroedinger's Cat.  

 June 5th of 2008, when I went into Jack's room to wake him up he was having a seizure.  He was laying on his back rigid, eyes crossed.  When I lifted him he suddenly collapsed and became hypotonic, his eyes told me he could understand me but he couldn't respond.  

When the paramedics tested his blood sugar levels they wouldn't register.  The E.R reading was 18.  Yet today he is healthy and growing and smart and he is my love.  Why didn't he die?  Why isn't he brain damaged?  I don't know.  Other children don't make it.  Those children were all just as sweet and as round and as beloved to their mommas as Jack is to me.  Many of their mothers; great, conscientious, knowledgeable, responsible, loving, caring mothers, went into their child's bedrooms just a few minutes too late.  

I don't have pat answers to why some children are "spared" and some are not.  I do know it isn't because God loves me, my husband or Jack more than someone else.  I do know that I wasn't somehow more "deserving".   There is nothing like past loss to illustrate that point very clearly.  

If merit had anything to do with avoiding tragedy then life is actually more confusing than not.  The hymn comes to mind "I Know Not Why" .  

HymnI know not why God's wondrous grace

It gives me comfort at 3:00 a.m. when I'm awake  wondering...
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Phones and Humility

July 11, 2009 by Rieshy

I have unusual teens in that none of them really like to talk on the phone.  Our family policy is that you get a (cheap) cell phone when you can drive and until then you share the (cheap) kid-cell phone with the other kids.  Therefore our 17 yo, Luke, has a phone and the three girls all share a phone.  The rest of the boys are still too young to care.  Luke's cell phone has a broken screen but he can't get a free (and cheap) upgrade until December, so for now he's stuck with it.  He really doesn't care because he would have to be lying in a ditch needing help before he would voluntarily dial someone anyway.  However, as I was helping him pack up his phone and charger for his three week trip to Guatemala I became concerned that he might have trouble making an international call without being able to see his screen, so I swapped the girl's phone with his.

I forgot a few things, things like... 

1)The girl's phone says "Bump it to the trumpet" on the outside screen.

2)The girl's phone says "Hey, girl!"  when the phone is opened.

3)The girls asked me to pretend to be Aunt Petunia from Harry Potter- and they recorded me.  The ringer doesn't ring instead it repeats, "Mummy is calling, my little diddykins", over and over and over.

4)The girls programed all this and locked it with a password that no one remembers.

My husband called to remind me of the above, ostensibly to ask for the password so they could fix the situation.  But he had already rightly guessed that no one would know the password.   In reality, he simply called to share the situation with me because accidentally humiliating your teenage son is just good clean fun, especially if your spouse is the guilty one.

Somehow I have the feeling that I will not be hearing my son's voice for about 3 weeks.  I'm just glad there's email.

Old Papers- Part 2

July 10, 2009 by Rieshy

Sam's crankiness, Jack's poolside throwing up all make sense now.  Someone invited the flu to our house without my permission.  Probably the same someone who always spills ice on the floor in front of the fridge.  The upside is I am showing videos in the middle of the day with absolutely no guilt, which means I have time to sit at my computer unmolested.  I thought I'd transcribe another section of my Mom's old talks about suffering.  

Remember that I am transcribing lecture notes as they were written, and Mom probably expounded on certain areas.  Some of this section seems a bit abrupt when typed but try to imagine a sweet voice and an incongruously loud laugh.

Why is Suffering In The World?

Years ago when we lived in Boston, my friend, Peggy Holley won a radio contest in  my name with the following ditty:

God made a beautiful beginning,

But Man spoiled his chances by sinning.

We hope that this story will end in God's Glory,

but at the present, the other side is winning.

We live in a world where there is sin. When we put on our Lord as our savior, we don't get plucked up and moved to a perfect place.  He leaves us here to contend.

We are told that Satan is a fallen angel.

2 Peter 2:4  "For if God did not spare the angels when they sinned, but cast them in to hell..."

Jude 6 "And the angels that did not keep their own position but left their proper dwelling have been kept by him in eternal chains in the nether gloom until the judgement of the great day"

We know that Satan has powers.  He tempted Jesus when Jesus was lead into the wilderness. He had to have had the power to fulfill these temptations.

Jesus himself, called him the Prince of this world.

1) John shall the ruler of this world be cast out.

2) John 14:30....for the ruler of this world is coming.  He has no power over me.

3) John 16:11...because the ruler of this world is judged.

We are told in 1 Peter 5:8 that he walks around like a roaring lion seeking someone to devour.

So with suffering we have 2 choices.

#1 God is the author of suffering and He puts it in the world to hurt, to refine us, to test us.  That God has absolute control and plans suffering as a tool....

#2 Satan has power too and he tries us with his powers.  That it is Satan who wants us to suffer.  That it is Satan who wants us to sin and suffer.

The only perfect place where there was no sin, sorrow, or suffering was the Garden of Eden.  When man and woman made the choice to disobey God and eat the wrong food, they made the choice for all of us to have to live in the World.

God did not want to be worshiped by robots... He wants us to worship Him freely.  He has a perfect will and a permissive will.  He allowed the death of our child but he did not design it.  He could have prevented it... but my son had the choice of running across the street or waiting for me as he should.  Once the choice was made, we have to live with the circumstances that come from that choice.

When we were told that, "God must surely love you because of the suffering you are going thru."  I was less than Christian in my attitude.

Of course, they got their idea from Hebrews 12:6 "For the Lord disciplines him whom He loves."

Discipline and Love may go together but the God of discipline and love does not cause suffering just so one can grow from it.

It comes down to would you rather believe that God made suffering and plans it for us or that we live in a world that is not longer perfect and Satan has powers too.

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July 8, 2009 by Rieshy

 "Fail" is the name of a popular Internet meme where users superimpose the word "fail" or "epic fail" onto compromising photos or short videos.[1]The meme is widely believed to have come from the arcade game Blazing Star. When the player loses, the message "You fail it! Your skill is not enough! See you next time! Bye bye!" is shown.[2]

This wiki entry was my day.  We sent our oldest child, a 17 yo son, off to Guatemala for a three week intensive lanugage school, studying, you guessed it, Spanish.  He is such a great kid and has turned into a great, shall I dare say, adult.  A seriously fun to raise child, except for a brief time when he was 6 and inexplicably wanted to spit everywhere.  This trip is a big deal for him and for my husband and I.  A day of independence for him and a day of letting go for us.  I had so many images of a happy, maybe even tender farewell, images of my husband and I praying with him before they drove off, taking photos as they left.  Not.

Instead there was the small problem of his debit card being cracked, which we only discovered on Monday morning.  Then there was waiting for the new one (which we paid $25 stinking dollars to have expeditied), then there was the mix up with the PIN.  Instead of happy family photos around Dad's car there is Mom, still in her night gown, in the driveway saying in a screetchy, unpleasant voice, "What do you mean you don't remember your Social Security number...."  All while inside the 18 mos old is tirelessly unpacking the momentarily unguarded suitcases.

At least it may take him longer to be homesick.

Fast forward to the pool (let's just skip the crying jag), we are having fun.  The older kids are enjoying being with friends and I'm starting to relax.  Jack and Sam are jumping off the edge of the pool into about 6 inches of water in order to show off for a random cute little girl and her mom.  Suddenly little girl's mom stiffens and moves little girl away.  Always a bad sign.  Jack has vomited into his Spiderman swimsuit.  Luckily the suit is one of those body suits with floats inserted into it, so the vomit is all caught neatly and disgustingly in an indentation around the neckline.  I whisked littles out and away.  Jack's blood sugars were fine, not great, but fine.  No idea why he threw up.  He could have just swallowed some water when I wasn't looking.  He's fine.  We are home taking it easy.

I just hate this illness.  I hate it for Jack.  I hate it for the other kids.  I hate it for me.  I hate the way it ambushes us when I least expect it.  It ambushes, gives an adrenaline rush and then 98% of the time nothing happens.  I give some carbs and protien and everything is fine.  Then I'm stuck with a bunch of adrenaline, feeling foolish and slightly crazy.  The alternative is worse.  The 2 % of the times that carbs don't work means the hospital, and pain, and more fear, and interminable waiting.

"You fail it!  Your skill is not enough!  See you next time!  Bye Bye!"

False Economies

July 7, 2009 by Rieshy
Like most people I know, money is tight for us right now.  My last electric bill was a good $80 higher than I expected... eeek.  Therefore we've not been using the air-conditioner.  Windows open, ceiling fans going.  It's been great.  I don't have to get bent out of shape every time my littles dawdle as they go in and out, which they do all day long.  I can hear the birds and feel the breeze.  Until today.  Today not so great.  Today we had normal Tennessee weather for the first time in a week.   It reached 90 degrees in the house by 5:00 p.m. and that doesn't factor in the humidity.  

I can deal with it.  I'm cranky, my kids are avoiding me by going outside to cool off.  Fine, we are saving money,  they are getting exercise and fresh air, I'm getting alone time, it's all good.   Except that Jack can't eat when he's hot, which means I couldn't get his medicine in him at dinner.  Which means that I've got to keep him up later until I can get it in him, which of course means tomorrow will be iffy.  I'm so prone to tunnel vision that I forgot about this small detail.  Hmmm, cost of crisis versus air-conditioner?  

As Forrest Gump would have said;  "I'm not a smart man, Jenny."  Except of course I'm a woman.  An overheated, frizzy haired, sweaty woman that just shut all the windows and is waiting for the air-conditioner to catch up.

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Old Papers

July 5, 2009 by Rieshy

My mother, Genie, died in 1993 of Primary Pulmonary Hypertension. She was only 53. I think they have since changed the name of her illness, though they still don't know much about it, nor do they have a cure. Curiously, they can now slow it's progress with Viagra. A fact that would have made Mother laugh and given Dad ammunition for much teasing. 

A couple of years ago my Dad gave me a box of some of Mom's papers that I stuck away without sorting. When I finally looked through them I found a series of short talks she gave sometime in the late 1980's at a retreat to a group of young wives from Princeton Theological Seminary.

The opening section was entitled "What is Suffering". I found it very characteristic of my mother that though she mentioned my brother's death she didn't share a lot of details about the rest of that awful year.  That same year:
  • my parents also lost two close family friends to unexpected deaths.  
  • My father lost his job and we moved from Maryland to Canada, and then from Canada to New Jersey.
  • My mother's father died.
  •  For a while in Canada the doctors thought that I had Leukemia. 
  • My sisters were teenagers.
Those are just the things I know about. All in the same year.

I thought I'd post the talks one or two at a time as I go through them.

What is Suffering?

You have suffered today. In some way.

Some of you cleaned the house, left meals prepared, did the laundry for the children and your husband so that you could be away tonight and tomorrow...without TOO much guilt.

You have gone thru this day so quickly that right now you have an Excedrin headache #99.

Your kids have been sick since the 1st of October and you are so tired of runny noses that you could scream.

You just found out that your husband's job is to be terminated.

The washer and dryer both stopped working. Both at the same time.

Your family doesn't understand your desire to be a Christian and belittle you.

Some of you are thinking, "None of these are suffering. Some are minor discomforts... Let me tell you about REAL suffering".

I know that a divorce, death of a mate, parent or a child is real suffering. But the other can be too.

My husband and I have had the experience of the death of a child.  We had three daughters when our son, Nathan was born in 1970. He was named Nathaniel because it means Gift of God and we felt that he was indeed a gift.

When he was in first grade he had to cross a very busy four lane street to get to school. He was not allowed to cross alone...we walked him across going to school and met him when it was time to come home. One day he saw me and ran to meet me...He was hit by a car and killed instantly.

Most often, tho, we only go thru a death like that once. Or a divorce once. Death of parents once...

We learn to deal with this and we hope never to use that ability again for ourselves in our whole lives. 

The little discomforts and illness come all the time and we need to know how to give them over to God so that we can know how to give the big ones.

My definition of suffering is anything unpleasant, hard to deal with, anything that causes pain or grief.

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Motherguilt Really Is One Word

July 4, 2009 by Rieshy
If you've been a mom longer than 30 seconds you're probably familiar with Motherguilt. My husband has a story about his mother that is a great example of Motherguilt. One Summer day his mom got sick of him going in and out of the house. I don't know whether it was the door slamming repeatedly or the air conditioning being sucked out of the house that was driving her the most nuts. At any rate she got fed up, locked the house door, and went upstairs for a sanity break. Of course, that was when my husband crashed his bike and broke his arm and couldn't get back in the house. Motherguilt.

For three nights before Jack's first metabolic crisis he kept waking up crying for more and more drinks, carrying on and generally throwing a series of tantrums. Now we know he was exhibiting fairly classic "brittle" behavior. At the time we thought he was merely being a toot and responded accordingly. On the third morning when he was lying in bed unable to call out and having a seizure, I was 10 feet away from his bedroom, sipping coffee, enjoying that Jack was finally "sleeping in". Motherguilt.

Samuel has been waking up, crying, thirsty and carrying on for the last two nights. Impending crisis or Impending Terrible Two's? I can't allow Motherguilt from the past to warp my current relationships with my children. After all, a respectable, almost 2 year old, will capitalize on any parental display of weakness. Especially Samuel, who seems bent on world-wide domination. All I know for sure right now is that I'll get less sleep than usual for the next few nights and I'm praying for wisdom while simultaneously pushing carbs. That should be enough to prevent new Motherguilt for now.

Oh, except of course, my 13 year old just reminded me that I lost her birthday check from Grand-Poppa, and I've not done anything about it yet. Her birthday was in May. Motherguilt.
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Barb and Boys

July 3, 2009 by Rieshy

At the pool yesterday Samuel, the 18 mos. old, had his first ever encounter with a Barbi Doll. 

He was splashing in the water near a little girl when he spotted the naked (of course) Barbi bodies lying in a heap at the edge of the water. He moved in nonchalantly to position himself and tried to help himself to the little girl's toys. 

 I moved in and reprimanded him for taking something that didn't belong to him. The little girl's helpful mother turned and said, "Oh, he can have one."  She plopped a redheaded Ariel barbi into Samuel's hand.

While the helpful mommy was watching, Samuel took the doll in one hand and with an amazed expression made an "oooohhh" sound. Then he sat in the water simply enraptured and stared, awed, at the doll. 

 He continued to stare for a socially unacceptable, disconcertingly, and embarrassingly long moment. Finally, he looked up at me and said something in Baby Language and then returned to staring, awed, back at the doll. 

 When he reached up to touch the doll's breasts, still awed, I was reminded of the debate among archeologist and art historians over the purpose of the "Venus of Willendorf" and other early fertility sculptures.

Duh, just ask my 18 mos. old son.

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Sneaky Supplements

July 1, 2009 by Rieshy
Years ago, when my oldest child Luke was young, we had company for dinner. Luke was asked to say the blessing. His prayer; "Dear God, thank you for this food and please don't let it be poisoned", was startling, to say the least. The company found it vastly amusing. I found it vastly mortifying and perplexing. What deep-seated anxiety was being revealed? Much later we discovered that his concerns over poisons had to do with the murderous habits of a royal family in the book, "Marlfox", that was much on my son's mind at the time. I had forgotten the incident until recently when Luke was helping me set out dinner. He started laughing as he watched me prepare plates. I set everyone's plate out except Jack's. Jack's plate of food was instead whisked to the corner of the kitchen where, with a turned back, I quickly drizzled something onto it from a dark green glass bottle. After setting it out I then shoo'd son #5 away from Jack's plate in an apparently suspicious manner before inviting Jack to sit. In Luke's opinion I had acted so untrustworthy that if he had still been 5, and thinking of Redwall, he would have afraid to eat.

The dark green glass bottle holds MCT oil. Jack takes it 3 times a day but actively dislikes it, thus the clandestine dosing. Originally I tried to be up front about it and gave it in apple juice, as suggested by the dietician. It came straight back up along with everything else he had consumed for about, umm, 3 weeks. Most unpleasant. Now I'm continually on the lookout for ways to sneak it into Jack. Baked into brownies or drizzled onto pancakes are the two most successful ways to date. Unfortunately, neither foods are really the cornerstone of a sound diet. Most other recipes I've found require too large a serving size for a toddler to realistically eat. So back to secretive spiking.

It is worth the subterfuge. Jack's geneticist was emphatic that he was prescribing MCT only because I wanted to try it and not because any studies backed its efficacy. Which I understood and appreciated. I don't want a snake oil salesman for Jack's medical care. However, I had read about it on the UMDF website and the geneticist agreed it couldn't hurt. MCT, in anecdotal glory, has made a huge difference! Jack's energy levels have skyrocketed.

Speaking of medical concoctions. I've always bought clear Gatorade to add cornstarch to. The clear because I was holding onto a small vestige of my life before FOD's. The life that didn't include high fructose corn syrup sweetened and dye laden beverages. (Insert supercilious opinion here.) Jack never much liked his "Go Go" juice but would drink it down like the trooper he is. Last time I went shopping for Gatorade they were out of the clear, so Lemon-Lime Gatorade came home instead. Guess what? 8 oz. Lemon-lime Gatorade plus 1 T cornstarch equals liquid Sweet-Tarts.

Until Jack is old enough to manage his own supplements and medications I'll be spiking away. Who knows what other new and bizarre flavors our experimenting may yield. Just don't sit at Jack's spot at the table.