Who sinned?

My favorite story in the gospels is found in John 9.  I love it for its rich theological truths as well as for the glimpse it gives me into the humanity of Christ and the people around him.  A few years ago, my husband and I had the privilege of dressing up as Bible characters and telling this story to all the VBS students at our church, which put me even more in touch with its beauty as a story as well as its grand proclamations about our Savior.  Too bad the supporting character isn’t named, or we might have already found a name for our son!  You should read this chapter if you haven’t done so recently.

It starts with Jesus and His disciples passing by a man who had been blind from birth.  The disciples ask Jesus, “Rabbi, who sinned, this man or his parents, that he would be born blind?”

Right here we are confronted with a misunderstanding of the truth.  So many people have this presupposition about suffering, illness, and death: Someone did or is doing something wrong to cause it.

There is a level on which this is profoundly true.  All suffering, illness, and death are ultimately in our world because of sin.  The world was not meant to be this way!  Our deepest heart of hearts tells us so; we can’t accept that human pain is the normal, natural way of things.  When sin entered the world, so did all the ugliness that is suffering.  (Romans 8:20-22)  Sickness and death will be our constant companions until this earth is destroyed and remade (Rev. 21:4).

And yet the disciples’ understanding of illness was incomplete.  They were sure that each instance of suffering was immediately linked to someone’s specific sin.  Many today believe something similar – that if you will only have enough faith/pray hard enough/repent, then God will provide healing.  Stated in the negative, if God does not provide healing then it is because of your sin.

Jesus, in one sentence, adjusts their thinking.  He responds, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”  Suffering, He tells us, is not always a tit-for-tat response to man’s sin but sometimes solely a part of God’s plan to bring glory to Himself.

While God created the world to be perfect and without suffering, He was in no way surprised by the Fall, nor is He stymied or boxed in by our choices or demands.  Jesus reminded His disciples that God is so much bigger than an “if/then” computer program.  He has grander things on His agenda than our lives.  He can even use the effects of sin, whether the general effects of living in a fallen world, or the specific consequences of our individual sins, to display His character and power, and THAT is what He is all about.  

While suffering should bring introspection, I am so glad that Jesus made it clear that I am not necessarily to blame.  How hard a trial like this would be if I were convinced that my sin had caused it!  Instead, I can rest in His plan, even if I can’t imagine how it can bring God glory.  

Think of the man in John 9 and of his parents.  When their son was born not seeing and nothing could help him, could they have imagined that years and years later God’s Son would walk by their son in their town and heal him, using the event to proclaim the reality of who He is?  My guess is that this scenario was outside of the possibilities they considered as they wondered why they were living life with a child who grew to adulthood unable to provide for himself.  In the same way, God’s plans for us and for our son may be far outside of human understanding and imagination.  We might not know for decades, like the family in John 9, or even until eternity, what God is doing.  But we can be sure it will somehow put His glory and His works on display.  

I told you I liked John 9…that was the first 3 verses!  There’s so much more in this amazing story...

Lots to pray about

Yesterday I met with our perinatal doctor to discuss all the tests and imaging they have done over the last three weeks, and to think about what the results mean going forward.

First, the funny news.  Cadence Maria Ramos is actually a little boy who played shy for a few days during the numerous ultrasounds 3 weeks ago.  Had everything been normal, we would have had no further testing or sonograms and have had a fun surprise in October!  (And a son with nothing but pink onesies to wear...)  So, while all the spiritual and emotional meaning behind *his* old name remains true, we will be searching for a more appropriately masculine moniker and probably changing the blog title.

Now for the serious news.  Our son (sounds kind of funny after almost a month of thinking of our daughter!) has a bilateral diaphragmatic hernia, meaning that the diaphragm did not attach on either side.  This is a VERY rare condition (estimates are something like 1 in every 250,000 to 1 in 500,000 births).  Almost no lungs have developed, making surgery after birth unlikely to succeed.  While our God is not bound by statistics, so that you know the seriousness of the situation, the odds of him surviving are less than 1%.

There are some clinical trials where doctors do an in-utero procedure to try to give the lungs room to grow, but since the baby has heart defects in addition to the hernia, he is not a candidate for these.

We will still plan to deliver at a facility that would be able to provide the kind of specialized care he would need if, as our doctor said, he is "the miracle baby".  We anticipate that their staff will give us more specifics as to what we might expect when our son is born and what decisions we need to make before then.

With these defects, there is a higher likelihood that our son will be stillborn or that I will go into preterm labor.  There is also greater chance that the combination of problems he has is caused by something genetic, although scientists have yet to isolate any genes that would allow them to say so definitively. 

The last 3 weeks have been quite a storm of circumstances and emotions, and we know that we have only been able to weather them by God's grace, which He has been so good to supply.  We are so thankful for your prayers on our behalf and on behalf of our child.  Please continue to pray for wisdom for the decisions we need to make on both the big issues and the small details.  Please also pray for our hearts, minds, and souls as we grieve and hope at the same time. 

"Let us hold fast the confession of our hope without wavering, for He who promised is faithful;"
~Hebrews 10:23, NAS

Maria

The Anunciation, Henry Ossawa Tanner

While the resident family musician writes an explanation as to why we chose Cadence as our daughter's first name, I'll tell you about her middle name.

Often when difficulties come, my first question is “Why?” 

Surprisingly, that was not the first thought that crossed my mind when we were told that our daughter has some severe congenital conditions.  I actually didn’t have a question.  Just a complaint.  I don’t want this.  Not for me, not for her.  

Then the next thing I thought of was the Christmas story.

 

Last December, for some reason, the part of Christ's first coming that struck me anew was Mary’s response to the announcement of the conception of her miraculous Son.  I can think of so many things I would have said had that angel brought me such news.   “Why me?”, obviously.  “Don’t you know how this will change my life?” and “Are you sure this is the best plan?”  But all Mary said was "Behold, the bondslave of the Lord; may it be done to me according to your word." (Luke 1:38 NAS)

Her life was turned upside down by an unplanned pregnancy, village gossip, a fiancee who didn't know what to do, and a tough road trip while 9 months pregnant.  As if that weren't enough, when her baby boy was only days old, Mary was promised that because of Him, “a sword will pierce even your own soul.”  (Luke 2:35 NAS)   

That’s what I am most afraid of…the pain that I know is coming – either of watching my helpless little baby undergo surgeries and procedures, hoping that they will save her life, or of having to say goodbye to her.  It will pierce my soul.  But Mary bore this as well.  And she said goodbye to her Son so that we could be offered peace with God.

I am praying for her heart of submission and trust for both myself and for my daughter.  So, Cadence's middle name is Maria – to remind my husband and I to be God’s willing slaves in this circumstance and all other circumstances He brings into our lives, and to ask Him that our daughter would one day be His faithful servant as well.

Introducing Cadence

This has been a remarkably hard week, and we know that there are many hard times to come.  In the last several days, we have found out that our unborn daughter is suffering from some severe congenital conditions.  She has several defects in her heart and also has a diaphragmatic hernia.  Both the cardiologist and the perinatal specialist have informed us that on their own, each is serious, but in combination, they are “not good” and “high risk”.  

The treatment for her heart would consist of a series of three surgeries, one in the first two weeks of life, one at 6 months, and one at 3 years.  These surgeries would hopefully override the lack of blood flow in certain areas of her heart and allow the half of her heart that is functional to supply her body with sufficient oxygen.  Many children do well with these surgeries.

However, the diaphragmatic hernia is more serious and would need to be dealt with first.  Drastic measures may be needed to stabilize her when she is born, at which point she could undergo surgery to repair the hernia, and hopefully stabilize again in time for the first heart surgery.  

Some of what makes our daughter’s combination of issues so difficult is that, because of the hernia, the space in her chest where her left lung should be growing and developing is currently occupied by stomach and other organs.  Without that space, the lung may not develop well enough to survive the pressure that both this first surgery as well as any of the heart surgeries would put on it.

Next week, we will have a fetal MRI done to determine the baby’s lung volume and the severity of the hernia.  These measurements will give us a better picture of what we might expect to happen when she is born and what options we might have for caring for her.

We have decided to name this precious little girl Cadence Maria (more on that later!) and covet your prayers for the difficulties she will face when she enters this world.  Please also pray for us to have wisdom and strength as we walk this road with her, however long or short God allows our time together to be.