“What’s Today Mommy?”

April 4^th, tissue matching begins.

Nicole’s CBC blood work-up from last week came back outstanding.  Nicole’s red blood cell count is normal and her hemoglobin level is up to 11.  A normal hemoglobin level is around 12, but we will take it.  As I speculated in last week’s blog, Skipping Like Charlie Brown ( http://standintheway.blogspot.com/2011/03/skipping-like-charlie-brown.html ) Nicole’s recent burst of energy is due to her feeling more normal than she has in quite some time.

Titia and I go to University Hospitals in Cleveland on Monday to have blood drawn, along with Nicole, to see if we are match to donate our kidney to Nicole.  A normal CBC work-up requires 1 vial of blood.  On Monday, Nicole will have 10 vials of blood drawn.  Yes, 10!  Please remember Nicole in your thoughts and prayers as this is going to be difficult for a little girl.  That is a lot of blood.  She has a tenacity and toughness that most of us so-called adults would love to have.  She also has a naivety and innocence about all of this that has made me do some soul searching!

Nicole has absolutely, positively no idea what is going on.  Even if we told her about Monday she would not know what we are talking about.  She does not even know, much less care, that she has only 1 failing kidney.  That fact alone would keep most of us up at night…every night.  It is not relevant to her.  She wakes up each day asking a simple question, “What’s today mommy?”  By this she is not asking what day it is, she is asking what is going to happen today.  (She says this in her cute, little speech that part of me hopes will never change.)  You see, only what is next is what matters.

We are the opposite, aren’t we?  I have been blogging about the donor tissue matching for weeks.  Pondering the potential outcomes, problems, and so on.  Nicole…not so much.  “What’s today mommy?”  That’s all.  As I said, she doesn’t know or care.  It is completely out of her control.  Come to think about it, it is completely out of my control as well.  I cannot control what happens on Monday any more than she can.  In fact, this entire process of working towards a kidney transplant is totally outside of my realm of control.  Sure, Titia and I can jump through the administrative hoops, administer the medicine, drive here and there, and worry until our hair falls out.  But we can’t make there be a kidney match, we can’t make her red blood cell count go up, we can’t make her hemoglobin go up, and we can’t keep the pain that lies ahead for our little girl from happening.  And even if there is a match we can’t make her body accept that foreign kidney as her own.  It is ALL out of our control.

A few years ago I went through a personal situation that was completely out of my control.  It went on for months and months and months.  I literally had no say or control on what was happening.  Titia and I were taking a walk one night and I told her that I felt like a stick that had been thrown into a river and the current was taking me where it would.  I would land only where (and only when) the power of the river determined.  You see, a stick has no say against the raging waters.  It is helpless.  I remember distinctly, as if it was yesterday, throwing my hands up, not in disgust, but in relief.  For months I had tried to change the circumstance I was in to no avail.  I had found a great joy and relief in losing control.  Giving up control!  That is better said as giving up the illusion of control.  The reality was that I never had any control to begin with.  I often think that if I am in control then there is peace.  The opposite is true, there is just worry and stress.  After all, it all depends on me.  Right?  This must be true.  The truth is that there is a great peace in realizing that you are not in control.  Just letting the rivers of life and the sovereign hand of God take you where you need to go.  Learning to trust His provision, His timing, and His results of our labors.  I truly believe this is the great lesson many of us are to learn in this life…trust, believe, faith.  Giving up the illusion of control and turning the outcome back over to our creator.  Like the ark that carried Noah and his contingent of animals, my life is very much rudderless.  Did you know the ark, as in Noah’s Ark, had no rudder?  Why?  I will tell you why.  If there had been a rudder Noah would have tried to steer the ark and he would have wrecked it.  All he could do was float along and let the Lord guide the boat through the greatest storm this world has ever known.  The destination was not the point.  It was the journey that mattered.

I am here again.  At a point where there is no control.  And I can say with great joy and anticipation that I feel an overwhelming peace.  This time I know I have no control and I feel so, so good about it.  There is a great relief in losing control.  I guess I have been taught another life lesson from Nicole.  I now say, “What’s today daddy (Lord)?”  And he shows me what’s next. 

Matthew 18

¹ At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?”  ² He called a little child to him, and placed the child among them. ³ And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.

What a relief, it doesn’t all depend on me.

What are you toiling about in your life trying to control, manipulate, and otherwise royally mess up?  J  Drop the illusion of control and place your trust squarely in the hands of the One that truly does have control, Yahweh!  Praise is to Him and Him alone as the One and only true Sovereign of the Universe.

Next week I will report where the ark is at.  I may not know where this is going, but I am quite certain of who is steering the boat.

For His Glory,
Brian

Skipping Like Charlie Brown

Rest, it is one of the words that just rolls off of our tongues.  We long for it in a culture where we run back and forth shuttling the kids to and from soccer practice, piano, school, ballet, and anything and everything we may be involved in.  This week has been restful at the Miller household.  Thankfully.

Nicole has received her necessary two doses of Aranesp© in an attempt to increase her red-blood cell count.  After yesterday’s regular CBC blood work-up we find out today if her red-blood cell count and her hemoglobin have increased to the point where she can begin tissue matching with potential donors.  We are extremely optimistic that this will be the case because Nicole has been bouncing around the house the past couple of weeks like we haven’t seen her do in quite some time.  What an incredible sight!  In the past she has typically crashed in the afternoon for a 2 hour nap and then just “hits a wall” at around 8:00-8:30pm in the evening.  But she has turned a corner and doesn’t seem to want to take her usual naps and in the evening she is skipping her way across the floor on her way to the bedroom.  Obviously, something has improved in the way she feels.  By the way, she skips like Charlie Brown.  Have you ever seen the Christmas classic Charlie Brown’s Christmas?  In the show Charlie Brown learns about the true meaning of Christmas from Linus, who spontaneously quotes the Christmas story from Luke 2.  Thrilled to hear that Christmas is not just a racket run by a big eastern syndicate (Lucy’s understanding of Christmas) Charlie Brown parades proudly out of the auditorium where the Peanuts gang is rehearsing a Christmas play.  Carrying his pathetic, little Christmas tree and followed by the gang, now enamored by Charlie who has become their new found hero, Charlie Brown skips down the road recalling the truth of the words that Linus spoke.  Yes, Charlie Brown skips.  Almost every time Nicole starts skipping she turns to me, her daddy (I love that word), and says, “Look daddy, I’m skipping like Charlie Brown”.  J  I think she turns to me and reminds me of Charlie Brown because she knows that I almost always quietly shed a little tear while Linus quotes from Luke 2.  I feel like I can relate to Charlie Brown on a myriad of levels…I had better stop here.

I just stopped and re-read what I wrote above and have determined that I absolutely love blogging.  Half the time I don’t even know what I am going to write about when I start, and this is just another classic example.  I started out thinking about how restful this week has been and ended up recounting the story of Charlie Brown’s Christmas.  Random Thoughts, by Brian Miller.  It obviously has been a restful week at the Miller’s.

Anyway, and back to the point of the blog, please pray that Nicole’s blood work comes back with good news and we can press on with the long awaited tissue matching.  Titia and I have been scheduled by the transplant coordinators to perform our blood work, along with Nicole, on April 4^th.  Of course, this assumes that the blood work DOES contain good news.  I have said this before and I will repeat it here, my prayer is that I am the perfect match and the entire process for finding a donor will end on April 4^th.   We will see if the Lord’s will matches mine.  Here is a verse that pretty much sums it all up:

Proverbs 16:9

 ⁹ In their hearts humans plan their course, but the LORD establishes their steps.

Hmmm.  We are all planning something in our hearts, but how often do we consider that it is actually the Lord that establishes (directs) our steps and path?  I will leave that truth right there for you to ponder.

For His Glory,

Brian

Learning Contentment

I leaned over the bed and kissed her goodnight.

Titia and Nathan were gone for the weekend and it was just me, Nicole, Caleb, and Katelynn.  The house was quieter than normal once the kids went to bed.  Normally Titia and Nathan keep me busy once the littles (our pet name for the littlest members of our family) have gone to bed.  Not this weekend.  You have a chance to reflect, think about where you are at and where you are going, what you are doing right and what needs improvement.  I have learned through the years that too much self-reflection can sometimes be a negative and not a positive.  It can make you inward thinking, selfish, and restless.  It was one of those times.

As I stood there looking at my little girl as she slept I found myself thinking about the whole situation; the kidney transplant, tissue matching, blood work, her learning challenges, her lack of perfect hearing (I have been told that 33% of individuals with the BOR genetic disorder experience progressive hearing loss to the point of being deaf…and she has some hearing loss), and so on.  I could have broken out the violin and started playing a sad melody…it was so pathetic.  I found myself in one of those rare moments in my life when I was not content.  Why did Nicole have to be born this way?  I questioned God.  I questioned the circumstances.  Why?

This isn’t the only thing in my life that I am discontent about at the present time.  There are other issues that I will not elaborate upon, as they are not relevant.  Other circumstances that I can’t change.  If things were only a little bit different then IT WOULD BE WHAT I WANT.  But they are not.

There are some things in our lives that just are (this is a statement worth some reflection).  You may call it fate, dumb luck, or whatever.  I don’t believe in luck, or happenstance.  I believe in the sovereign hand of God guiding my life, and for that matter, everyone’s life.  Placing mountains before us to climb and removing obstacles as well. (Romans 8:28)  You may not agree.  That is OK.  We are all entitled to our opinions.  If I truly believe that, then why the discontentment you may ask?  Good question.

As I spent the weekend with Nicole and the other littles I once again saw with fresh eyes exactly what an amazing little girl I have been blessed to parent.  She is so, so full of life.  She plays vigorously, sings, dances, loves without end, hugs, obeys her parents, forgives easily, has an imagination that won’t quit, and in general is just the most wonderful little girl a father could ask for (don’t look too closely or you will see the halo over her head tilted ever so slightly J).  Why, oh why would I want to change her one little bit?  She is who she is and she is exactly the way she was created to be.  She is wonderful and I feel ashamed that in a moment of discontentment I wished things were different.

Psalms 139

¹³ For you created my inmost being;
   you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;

There are some times in our lives when I believe that if the tears are to roll down our face then we need to just embrace them and allow them to do their perfect work.  The same could be said of laughing…just let it go and don’t worry about who is looking at you.  Why are we always trying to change our present circumstances?  It seems we humans have a knack for looking back at the past through rose-colored glasses or into the future thinking things have to be better.  All the while the beauty of our present circumstances goes painfully unnoticed.
Life is meant to be lived, for the most part, in the now and where we are at is exactly where we need to be to learn a valuable lesson.  We need to all, myself included, look around and stop trying to change things that seem imperfect.  Instead, let us learn to be content in whatever state we are in.

Philippians 4

¹¹ I am not saying this because I am in need, for I have learned to be content whatever the circumstances. ¹² I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. ¹³ I can do all this through him who gives me strength.

For His Glory,
Brian

P.S.  For those that want to learn more about Nicole’s genetic disorder, BOR, here is a link to a good reference.

 http://ghr.nlm.nih.gov/condition/branchiootorenal-syndrome

Who is that “Man in the Mirror”?

It has been one of those weeks.  You know the type.  Everything that could possibly go wrong, has.  The kids have all been sick and they seem to be passing it back and forth in some sort of sick, twisted conspiracy.  It started with Katelynn, then Caleb, then Katelynn again, then Nicole, then Caleb again.  Like I said, it has been a struggle.  Nicole, who can’t afford to lose a single pound off of her tiny frame, has lost 3 pounds.  This is exactly what we don’t need as we are fighting, scratching, and clawing to get her to the point where she can start doing the tissue matching with all of the potential kidney donors.  She seems to be climbing out of this deep basement after a long, hard week.  Unfortunately, because of the sickness, she has gotten to the point where the mere sight of food sets off extreme food sensitivities.  It is normally bad…but not this bad L.  The other night she wouldn’t eat dinner and in the heat of the moment we resorted to giving Nicole sausage for dinner, one of her favorites.  That wouldn’t have been so bad had she not had a hotdog for lunch.  Desperate times call for desperate measures.  You parents know what I am talking about.  But, alas, it did not work.  With the plate being pushed in front of her nose (in hopes that she would receives some much needed calories) she proceeded to cough, then gag, and then finally release all of the days prior eaten food and drink right out on the floor.

The stress from this week has been incredible.  We know Nicole cannot afford these types of set-backs.  She hasn’t taken her typical medicines like she is supposed to because all she wants to do is gag at the sight and smell of it.  We are afraid that the one month delay on beginning the tissue matching may turn into 2 months.  Then what?  This process hasn’t even started and my patience, what little I have, is wearing incredibly thin.  And with that statement, here comes the weekly spiritual and life lesson that comes with this blog…breaking generational curses.

Have you ever looked yourself in the mirror in one of your tirades and said, “I am acting exactly like my mother” or “I am acting exactly like my father”?  We wonder when it happened.  Hmmm.  When did the metamorphosis finally complete and we become exactly like our parents.  Oh no, we never seem to get (or at least we don’t notice it quite as readily) the wonderful characteristics of our parents.  It is those ugly traits.  The deep rooted character issues.  Can I be so bold as to say the “s – word”…SIN.  That’s right.  How is it the sins of our parents seem to be so easily passed down to us and we pick them right up as if it is a marvelous treasure to be garnered instead of the curse that it is to be shunned?  It is almost like we don’t have a choice in the matter.  It is like there is some sort of law, a spiritual law, at work.  A law as real as gravity.  We can’t see it but we know it is at work because we observe it.  The reality is, there is a law at work.  Actually, it is one of the characteristics of God.  Scripture states in Exodus 34:7 the following words, spoken by the Lord himself, about himself:

Exodus 34:7, "Keeping mercy for thousands, forgiving iniquity and transgression and sin, and that will by no means clear the guilty; visiting the iniquity of the fathers upon the children, and upon the children's children, unto the third and to the fourth generation."

What an incredibly profound statement.  The Lord is merciful, forgives sin, makes the guilty pay, and passes the sins of our fathers all the way down to the 3^rd and 4^th generation.  What?  How can this be?  Why is this just?  Why do the sins of those that have gone before land in my unsuspecting lap only to be lived out over and over and over again.  The same God that created the heavens and the earth and ordered the natural laws also created this spiritual law.  It is as real as gravity, the four seasons, the sun rise each morning, the patterns of the stars and planets, and so on.  Oh so real.  The Lord hates sin and by no means will clear the guilty.  This is why this is just.

Now back to my frustrating week. I am going to make several public confessions right out here for everyone to read and judge.  I am impatient.  I am a control freak.  I am impulsive (in negative ways).  I sometimes provoke me children with excessively high and unrealistic expectations.  Should I go on?  Maybe not.  You get the point.  I am no saint.  In the middle of this frustrating, stressful week…I saw them all.  “Mr. Control”, as a dear friend of mine referred to me as just this week (you know who you are…haha).  Mr. Impatience was right behind Mr. Control.  Snapping at my wife, who dealt with the children much more than me this week.  Provoking my children to wrath.  There is nothing like a control freak trying to control something that can’t be controlled (have you ever tried to get a kid to eat that will only throw up everything you put in front of them).  It was ugly.  Some of these things I was certain I was over.  Conquered!  Or at least I thought I had them under control.  But no, under pressure, there they come again.  Slapping me in the face and reminding me of a very, very, very important truth…there is nothing good in my naturally born man.  ABSOLUTELY NOTHING. 

Each of the sins I just pointed out.  Yes, those ugly sins that I battle day in and day out in my flesh, I can look back and see all of them in my parents.  No, I am not blaming them for my sins.  It is my problem.  I think some of these sins started a long, long time ago in my family.  Here is where they stop!  Here is where it all ends!  I will win the battle against these generational curses before my days of walking on this earth are over.  And here is how…do you want to hear some very good news?  I have been born again.  Yes, that is right, born again.  That Bible thumper, fundamentalist, evangelical phrase few people actually understand…”born again”…is the best news that anyone can hear.  We picture a pastor pounding on a pulpit saying “you must be born again” (the smoke pouring up between the pews as he points your direction straight to Hell) but we rarely picture the Son of God saying it.  John 3 states:

 ³ Jesus replied, “Very truly I tell you, no one can see the kingdom of God unless they are born again.^[a]”

What does this mean?  It means that just as I was born a natural man, from my earthly parents, it is possible to be “born again” from my heavenly Father.  And just as I inherited from my parents the sinful, earthly nature that brings about these sins I inherent from my heavenly Father His nature.  And the real wonderful news is that the divine nature that works in me from my heavenly Father will overcome my sinful, earthly nature.  Of course, this assumes that I actually submit myself to His will and walk according to His Spirit.

I don’t want to see the earthly, sinful Brian again that was present this week in the Miller household.  I want to see the heavenly, Spirit guided Brian.  Please pray for me during these trying times that I will submit myself to the will of God.  This process of Nicole’s kidney transplant is going to be a real test.  With the Lord’s help, I will make it through.

Unforgiveness, bitterness, discontentment, anger, and so on are the conduit in our lives that allow the sins of our parents to be lived out in our life.  Fill in the blank for your own life.  What are you holding onto that permits the sins of your parents to work its destruction in your life?  Here’s the nuts and bolts…you cannot overcome this on your own.  There is nothing in your natural man that will enable you to win this battle.  That is like using gasoline to try and put out a fire.  It won’t work.  Submit yourself to the will of God, be born again through the power of His Son, and receive His divine nature.  This alone is the solution to your problem…and mine.

Romans 7:21-25, 8:1-2

²¹ So I find this law at work: Although I want to do good, evil is right there with me. ²² For in my inner being I delight in God’s law; ²³ but I see another law at work in me, waging war against the law of my mind and making me a prisoner of the law of sin at work within me. ²⁴ What a wretched man I am! Who will rescue me from this body that is subject to death? ²⁵ Thanks be to God, who delivers me through Jesus Christ our Lord! So then, I myself in my mind am a slave to God’s law, but in my sinful nature^[d] a slave to the law of sin. ¹ Therefore, there is now no condemnation for those who are in Christ Jesus, ² because through Christ Jesus the law of the Spirit who gives life has set you^[a] free from the law of sin and death.

For His Glory,

Brian

Hopelessly Nostalgic

I have been accused of being a “doomer”.  I analyze what is happening in the Mideast, in the church, in the global economy, in the hearts and minds of people and come to the conclusion that insanity has gripped everyone and everything.  Being an engineer I am pragmatic and have come to the only logical conclusion…“NOW IS THE PERFECT TIME TO PANIC!”

Having laid this brief foundation about myself I will share something else very personal; I am hopelessly nostalgic.  For some reason I long for the days of old.  I am convinced, without any facts of course, that things must have been better “back then” than they are today.  Theologically I understand that “there is nothing new under the sun” (Ecclesiastes 1:9), but don’t confuse me with the facts.  I like to imagine men and women involved in the most honorable of deeds.  I picture men laying down there lives for their wives and family and women who sacrifice their careers and even their lives in the support of their husbands and the good of their children.  In other words, people who are willing to lose their own lives in order to allow another to gain life.  True nobility.  This was the spirit of Christ and what I long to see lived out in flesh and blood.

Philippians 2

¹ Therefore if you have any encouragement from being united with Christ, if any comfort from his love, if any common sharing in the Spirit, if any tenderness and compassion, ² then make my joy complete by being like-minded, having the same love, being one in spirit and of one mind. ³ Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, ⁴ not looking to your own interests but each of you to the interests of the others.

⁵ In your relationships with one another, have the same mindset as Christ Jesus:  ⁶ Who, being in very nature^[a] God, did not consider equality with God something to be used to his own advantage; ⁷ rather, he made himself nothing by taking the very nature^[b] of a servant, being made in human likeness. ⁸ And being found in appearance as a man, he humbled himself by becoming obedient to death— even death on a cross!

I love it.  Consider this:

• Do nothing out of selfish ambition or vain conceit
• Value others above yourself
• Do not look to your own interests but the interest of others
• Be a servant though you might deserve more
• Humble yourself to the point of death for the good of another

Until this process of finding a kidney transplant for Nicole began I believed it was rare, if not impossible, to see this lived out in modern society.  There are no more damsels in distress trapped in castles to rescue from a dangerous dragon or evil lord.  As knowledge has increased (Daniel 12:3-4) we have invented ways to run to and fro across this planet (and space) without ever stopping to stare someone in the eye.  We text, fax, email, social network, and blog and the human side of this life has all but ceased.  We live out the opposite of the 5 points listed above as we each seek our own things in our own way.  Families are falling apart at an uncontrolled pace and people are not even willing to sacrifice for their spouse and children, let alone someone else.  Ok, ok….you get the point.  I am beginning to doom here and the doom-o-meter is beginning to peg into the red.

The days of people doing the most honorable of deeds has not died.  The word of Nicole’s need for a donor kidney has spread and with it the Christ-like goodness within people has risen to the surface.  It has broken the deafening silence like the first strike of thunder in early spring.  What I believed wasn’t possible in our heartless world is being lived out right in front of me and all around.  The number of you that have stepped up to be a potential donor for Nicole is astounding to me.  In my first blog, From Deliverance to Hardship to Glory http://standintheway.blogspot.com/2011/02/from-deliverance-to-hardship-to-glory.html, I stated there were 12.  Well that number has swollen to something like 16 or 18 by now.  To be honest, I have lost track (Titia keeps track of these things).  Consider this; two of Nathan’s schoolmates and soccer teammates at Mansfield Christian School have volunteered to donate a kidney.  These young men have not even graduated high-school and yet they are willing to give of themselves for a little girl they barely know.  It is staggering and humbling to think about.  Or what about the two people that have volunteered that we don’t even know.  That’s right, two people have volunteered that have never met us or Nicole.  One of them is a teacher at Mansfield Christian and the other a friend of my sister in Florida.  Then there is my brother-in-law, Titia’s nieces, and other friends and acquaintances too numerous to mention.  I would be remiss in not specifically mentioning the young lady who heard about the need and told Titia right in Walmart that she would be willing to donate her kidney.  Titia, not understanding the depth of the offer, tried to minimize the statements and it was met with a determined resistance…”No, I will give my kidney”.  Tears flowed.

This has made me reconsider my fellow man and reflect upon myself and my actions.  Maybe the Spirit of God is living and breathing within the hearts of us, the Lord’s creation, after all.  Maybe there just needs to be a real reason to sacrifice.  Maybe our prosperity here in America has taken us so far that real needs are just few and far between.  But here we are with a real need and in come the knights, on their noble steeds, to rescue our little damsel in distress.

Thank you, Thank you, Thank you to all of you who have volunteered to donate part of who you are for Nicole.  Whether or not your kidney is the perfect match or not is not really the point.  Your willingness to serve our family is affecting all of us in such profound ways.  And to all of you that are watching this process unfold and are serving as prayer warriors along side us, thank you so, so much.  We are overwhelmed with your love and support.  The days of truly honorable deeds has not died.

As I have been challenged through this process maybe you will be challenged as well.  What opportunities lay before you right now to serve someone else?  How can you put someone else first and lay down your own wants and desires?  Maybe it is your family that needs your love, commitment, and devotion.  Maybe it is a friend.  Maybe it is a stranger in need.  I don’t know your circumstances but I do know one thing; if you seek to save your own life you will lose it.  This is for certain.  But if you lose your life, you might just find it! (Luke 17:33)

For His Glory,

Brian

P.S.  I am happy to report that Nicole’s energy has picked up noticeably since last week’s injection of Aranesp® without any side-effects!