Wednesday, February 23, 2011

Daddy, I’m Sorry I Cried

“Daddy, I’m sorry I cried”.  Those were the words that concluded a long and frustrating week.

Three weeks ago Nicole’s nephrologist in Cleveland prescribed Aranesp®, a drug to help boost her red blood cell count.  Nicole’s hemoglobin has been in the 9.0 – 9.5 range while the normal person’s count is around 12.0.  In order to proceed with the tissue matching her hemoglobin needs to be higher…thus the medicine.  It all sounds so simple, doesn’t it.  The problem is that Titia and I are the one’s who will be giving the injections to Nicole once every two weeks.  Having never given an injection we needed someone to show us.  The office in Cleveland recommended a “home health aide” agency or her local pediatrician’s office.  Until yesterday, none of these people wanted to show us how to administer this injection.  “We don’t know what her current hemoglobin count is.”  “We have never given this drug before”.  “There is no protocol for this”.  “We don’t understand this med or it’s side effects”.  On and on the excuses went and all the while more than 2 weeks has passed and she still had not received this all-important medicine…until tonight.  Finally, after some persuasion yesterday a nurse at her local pediatrician’s office showed us how to give the injection.  It was all very simple.  So what is up with all of the excuses?  Simple…LIABILITY.  No one wants to help because, well, what if something goes wrong.  WHAT IF SOMETHING GOES WRONG!  Has it really come to this?  Of course something is going to go wrong.  Everything goes wrong…all the time.  It is part of being human.

Titia and I were supposed to go in this coming Monday for tissue matching.  Now, this process has been delayed for 1 month (yes, a whole entire month) until she has had a couple of doses of Aranesp®.  The entire tissue matching process is now delayed 1 month because no one was willing to show us how to administer a simple shot.  Seriously!  This process got me to thinking about the story of the “Good Samaritan” in Luke 10:30-35:

“A man was going down from Jerusalem to Jericho, when he was attacked by robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. 31 A priest happened to be going down the same road, and when he saw the man, he passed by on the other side. 32 So too, a Levite, when he came to the place and saw him, passed by on the other side. 33 But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. 34 He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, brought him to an inn and took care of him. 35 The next day he took out two denarii[c] and gave them to the innkeeper. ‘Look after him,’ he said, ‘and when I return, I will reimburse you for any extra expense you may have.’

That Samaritan was a great neighbor to the beaten man.  But let’s examine the Samaritan in the story a little closer.  He bandaged up the man’s wounds, pouring on oil and wine.  I wonder if the Samaritan had the man sign his medical waiver before doing this.  Hmmm.  He must have done this.  Certainly, he never would have administered his love and compassion without a medical waiver.  After all, what if something had gone wrong?  The man might have sued the Samaritan.  Oh no!  It gets worse.  Of all the silly things to do, the man then put him on his own donkey.  Craziness, absolute craziness!  What if the man had fallen off the donkey and broke an arm, or worse?  This Samaritan is risking his whole career as a doer of good for this one man.  He should have just passed by on the other side rather than take on a risk like this.

Of course, I am being facetious.  But I am also trying to make a point.  I don’t blame the doctor’s or nurses for there concern.  After all, why should a doctor risk his practice over a prescription assigned by another?  I get it.  I really do.  But where is the line drawn between the legal element of things and the human element of things.  Behind this medicine, behind the potential liabilities, behind all of the administration, behind all of the paper work is a little girl.  My daughter.  She is a real, live, flesh-and-blood human with feelings.  A life made in the likeness and image of the Creator of the Universe.  And she is so precious.

I finally gave her this most precious injection tonight.  She squirmed in her seat at our kitchen table.  She cried.  I almost cried.  I knew it was going to hurt.  “Daddy, I don’t want to get a pokey”, she said over and over again as I made sure I was doing everything correctly.  I never imagined inflicting pain on my daughter for something not related to discipline.  Never!  It was terrible, absolutely terrible.  But here I was…”Daddy, I don’t want to get a pokey”.  The tears poured down her face as the needle was inserted, followed shortly by the meds.

A few minutes later, happy and joyful once again, Nicole comes up to me and says…”Daddy, I’m sorry I cried”.  Ponder this one awhile and let me know what you think…out of the mouths of babes.

One last reminder…never hesitate to help another person in need.  Think first about being a servant and second about what might happen if you help.  Remember, it is never wrong to love.

14For all the law is fulfilled in one word, even in this; Thou shalt love thy neighbour as thyself. (Galatians 5:14)
 22But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith,  23Meekness, temperance: against such there is no law. (Galatians 5:22-23)

For His Glory

Thursday, February 17, 2011

Faith in Action

An Update on Nicole...

The donor process is proceeding.  Those that have volunteered to donate a kidney to Nicole have been contacted by University Hospitals in Cleveland and are determining if they are a blood-type match.  Nicole is A+ and is fortunate to be able to accept a kidney from anyone with blood-type's A+, O+, and O-.  Titia and I are in this process as well.  Both of us are A+, along with Nicole, which allows us to move onto phase 2...tissue matching.  We will be going in the last week in February to give blood.  Tissue matching involves both the donor and the recipient (Nicole) giving blood at the same time.  Nicole is so small that she can only safely give enough blood for 1 to 2 potential donor's at a time or otherwise more potential donors would be giving blood that day.  They decided to start this process with us because we are immediate family and therefore have a reasonable chance of being a match.  They will draw the blood, put it in special containers, and ship it overnight to Cleveland.  The other potential donors will perform this same procedure once Nicole has recovered (a lot of blood is drawn).

On a more personal note, I have to say that I am extremely excited about the potential of being a donor for Nicole.  She is a “daddy's girl” and the thought of having one of my organs contributing to her life is thrilling to me.  It seems to me that giving of oneself is the greatest gift one human can do for another.  This applies not just to giving a kidney, but giving of oneself in service and love.  Jesus (Yeshua) stated that “ by this all men know that you are my disciples, if you have love one to another.” (John 13:35)  True love is not a warm and fuzzy emotion, but an emotion that is guided by our will.  In other words, true love is something that we must choose to do.  This does not always come easy for me, I must admit.  Like many of us, I am often selfish.  True love does not seek its own, but the good of another.  This gives me an opportunity to make a choice to love.  This is one of the reasons why I am so excited about this possibility.  Another reason I want to be “the match” is so that Titia can be the “mommy” post-surgery.  Titia really needs to be there with Nicole after the surgery and if she is the match then that cannot happen.  I can be there for Nicole, but I am not mommy.  Titia has patience and a nurturing motherly love that I can never have.  It is just the way it is.

The sequel to From Deliverance to Hardship to Glory...

In my first blog, From Deliverance to Hardship to Glory, I set the stage for how we arrived where we are today regarding Nicole's kidney transplant.  I received such an overwhelming response to the blog that I have decided to finish the story this week.

After the birth of Nicole, the diagnosis of BOR (branchio-oto-renal) syndrome, and the drama that resulted things calmed down for a little while at the Miller house, but that didn't last long.  It was not long and Titia was pregnant again.  Learning that BOR is from a dominant gene we knew that 1 out of every 2 children that we had will have this potentially debilitating disease.  Fear, is the opposite of faith.  We had not learned, completely anyway, that we are not in control.  We attempted the level 2 ultrasounds again even though they had failed so miserably with Nicole to diagnose her problems.  We went to the finest doctor that Columbus, Ohio had to offer at The Ohio State University Medical Center.  At 28 weeks of pregnancy he was convinced that all was well.  A few short days later, less than 1 week,  our greatest fears were realized, the baby was not moving and Titia was convinced we had lost the pregnancy…again.  She was right.  Once again, sadly, Titia had to go through the incredibly painful process of delivering a life-less child.  This time it was a little boy.  We named him Benjamin.

As a husband, I had never been so sad in all of my life.  There was nothing I could do or say.  After Titia delivered I had never seen her so sad, depressed, faithless, lifeless, and weary in all my life.  Titia is an optimist, full of joy, and full of child-like faith.  But not this time, it was over.  Understandably so.  Knowing there was nothing I could do or say I left the room to take a walk around the hospital and contemplate...why?  Once again, there were no answers.  (I think there rarely are to situations like this.)  A few minutes later I returned to the room to find THE MOST DRAMATIC TURNAROUND IN HUMAN HISTORY.  Titia was up in her bed, smiling, almost exuberant.  To be honest, I had figured they had come into the room and given her some “happy pills”, if you know what I mean J.  Seriously, what was there to be smiling about?  Why the joy?  Titia could not wait to tell me what happened.  I will do my best to recount this most amazing story:

After I had left the room Titia had prayed to the Lord very openly and honestly...

“Why did you have to take my baby? Why did you have to take my baby boy from me?  It is all so unnecessary.  Why?”

The God of all the universe responded (what is man that God is so mindful of us? (Psalms 8:4, Hebrews 2:6).  The most profound statement of all time.  The simplest, yet the most profound...

“I know what it feels like to lose a Son!  I will give you another son.”

These words turned Titia's sorrow into joy, her tears into laughter, and her lack of faith into breath-taking action.  “For God so loved that world that he GAVE his only begotten Son that whosoever believes in Him should not perish but have everlasting life.” (John 3:16)  This was the greatest news mankind had ever known.  Our Heavenly Father sent his Son, Jesus (Yeshua), to pay the sin debt for all of mankind once and for all and he became the curse of the law (death) for all of us that we might become the children of God.  And now our Father had reminded Titia of this news to tell her that just as His Son had risen from the dead that new life would once again spring forth from her womb in the form of another son.  God knows!  God cares!  God understands!

We came home from the hospital and the most incredible testimony of faith that I know was being lived out right there in our home.  I came home from work one day and Titia was knitting a baby blanket.  I asked her, “Why are you knitting a baby blanket?”

Titia responded, “The Lord promised me another son and I am going to knit this baby blanket for him until he is born.”

Wow!  Titia believed the spoken Word of God and she was living out that faith in action...not doubting.  Caleb Robert Miller was born on July 10th, 2007 perfectly healthy.  Caleb, a powerful example of faith in scripture, is an appropriate name.  GOD WAS TRUE TO HIS WORD.

Has God ever spoken to you?  Do you believe the Word of God?  Whether it is written in the pages of the HOLY BIBLE or spoken in an answer to prayer, it is trust-worthy.  God cannot lie and is completely reliable.  If you have never prayed in faith believing that God will speak to YOU, grant you wisdom, care about your circumstances, intervene on your behalf, then I am going to challenge you to TRUST HIM!  Our family has found that He is trust-worthy.

For His Glory,

Thursday, February 10, 2011

From Deliverance to Hardship to Glory

My daughter Nicole was born October 12th, 2004.  She is my little angel and a great gift from the Lord.

My wife, Letitia, gave birth to our first born son Nathan in May of 1995.  It all seemed so easy.  But the months of waiting for our next pregnancy turned into years.  And the years just seemed to go on and on.  Nothing.  After visiting specialists it was determined that our son Nathan was really a miracle and that we would most likely never have any more children.  Our waiting turned to despair.  Things like this make you question.  I don't know about you, but when I see unfit parents have child after child for the silliest of reasons I get angry.  I was angry.  Why us?  Why not one of these misfits parents I see at Wal-Mart?  (Not trying to be pious here, but seriously, have you seen some of the pathetic parenting that occurs at Wal-Mart?  It is enough to send a calm person over the edge...but I digress.)  I am just being honest here about how I felt, and feel to a certain extent.  The doctors recommended procedures, fixes, and solutions.  But we said, “No, it is the Lord that opens and closes the womb.”  We maintained this testimony as the years passed by.  If the Lord did not give us children, we would not have children.  It was that simple.  Why over-complicate God?  Why manipulate the situation He had obviously orchestrated?  We felt at peace.

The roller coaster continued.  Pregnancy…finally.  We had waited and waited and waited and our testimony in the Lord’s faithfulness became reality.

Joy...Despair  The pregnancy was lost at 20-weeks and my wife had to deliver a still-born little girl, Rebekkah.  We held this little baby in our arms and wept.  Why?  There are no answers for these things.  We stayed in hiding for weeks not wanting to peek our heads out.  Why, after speaking of the Lord's glory, did he do this?  It made (and makes) no sense to my finite mind at all.

Despair...Joy  Letitia was pregnant again.  (So much for the doctors saying we would never have another child.)  Nicole was being fearfully and wonderfully made by the Lord in the womb of Letitia.  The pregnancy went well and everything was perfect.  We had so much faith that we had 6 level 2 ultrasounds.  Yes, 6.  Obviously, our faith was miniscule, but the Lord was faithful.  Nicole was born on October 12, 2004.  On October 15, I went to the hospital sporting my brand new Honda Odyssey and was ready to drive my baby girl home.  “One more test”, said the doctor.  Why?  My coat was on.  Seriously!  I was ready to go home and I was mad.  “One more test”, he insisted.  He said we had to go home without Nicole while they ran one more test.  I was furious.  Why?  We had no answers.  None.  I rested well knowing that everything was fine and all of this was just an over-zealous doctor.

The phone rang at 5am.  “Mr. Miller?”
“It has been determined that your daughter Nicole may not have any functioning kidneys and she needs to be taken to Children's Hospital immediately!”
“Are you sure?”
“Yes, you need to come to the hospital immediately.”

…a stunned goodbye.  Without getting into too much detail about the 1000 tests that were performed on my angel, it was determined that Nicole had no kidney on her right side and a “small” kidney on her left side.  (So much for the 6 level 2 ultrasounds that were supposed to verify she had 2 kidneys.  Hmmm.  It makes you wonder.)  Nicole was born with a genetic defect, branchio-oto-renal (BOR) syndrome.  She was born with chronic kidney disease and potential hearing loss.

Deliverance to Hardship:  The Lord had brought our deliverance in the form of the birth of Nicole and now the hardship.  It reminds me of the deliverance of the children of Israel from Egypt (Exodus 14).  400 years of waiting and the Lord finally brought deliverance to His people only to have them run head-long into the Red Sea.  Backed escape...the enemy barreling down.  Why did the Lord lead them this way?  Have you ever looked at a map?  It didn't need to happen.  There were other routes that could have been taken.  Other roads.  But no, the Lord had a purpose in mind...

Hardship to Glory:  Despair for Moses and his contingent led to Glory for the Deliverer.  Moses, in obedience to God, raised his hand over the sea and the waters parted (Exodus 14:26).  The children of Israel walked across in victory while the enemy was destroyed behind them.

That was the path.  Deliverance to Hardship to Glory.  It is God's way.  It is on this road that He receives the glory as the deliverer not once, but twice.

Today, February 9th, 2011, we stand like the children of Israel backed up against the Red Sea with the enemy all around.  We have nowhere to go.  The medicine’s have done all they can and Nicole's little kidney is failing.  We have been told to obtain a donor kidney.  I cannot express to you the joy our family is feeling at this moment as now 12 people, some we don't even know, have stepped up to be a potential donor for our little angel.  The more potential donors the greater chance for a match.  The better the match the better it will be for Nicole.  This is restoring my faith in my fellow man and teaching me a valuable lesson in faith.  To God be the Glory.  But just as my testimony remained firm until the birth of Nicole I remain steadfast today.  The Lord is able to completely heal my little girl!  That is my testimony.  It is true.  The Lord that healed in the scriptures is the same Lord that lives today.  He knows our need.  We have a faithful high-priest in the Lord Jesus.  He can be touched with our infirmities and knows what it means to suffer and be delivered.  He can do it again.  Until they lay a knife on Nicole to put in that donor kidney I am going to scream from the mountain top:


The Lord's deliverance...our hardship...the Lord's glory!  May it be so as I raise up my hands and ask the Lord to part the waters.

Psalm 121
 1I will lift up mine eyes unto the hills, from whence cometh my help.
 2My help cometh from the LORD, which made heaven and earth.

For His Glory,