Watch for self-hate when Grace shines in uncomfortable corners

We have been so blessed and overwhelmed by the love and support of our extended church family in this period.  Prayers, calls, emails, drop-ins, meals, cleaning, kid-care, carpool, you name it - I am quite sure we would have fallen apart within a week of our return if it were not for our brother's and sister's in Christ (and yes, that includes blood-family too!).  We are profoundly humbled by the charity shown by the saints, and, God-with-skin-on we see as even those we have not met before bring us meals, or pick up a load of our laundry.  We are humbled because the grace His people, our family has shown us comes unmerited on our part.  And we are aware of that. 

Our Father chose to demonstrate His glory by touching our boys and moving them closer to life among us.  In our last ultrasound, it appears that River and Bryce are virtually the same size, have similar amounts of fluid and are growing at an encouraging pace!  They have almost doubled in weight since the laser surgery in Cincinnati.  So, not only were they delivered from the door-steps of demise, but God has seen fit to thrust them into a robust state of thriving!  Last night as we lay in bed with my hand on Nicole's tummy, I could even feel one of the boys, River I believe, kicking hard against the tummy.  I have felt them move before last night, but this was the first time I felt the jolting foot thrusts.  That said, our earnest prayer remains that the boys will cook long enough to heal from the effects of the TTTS and that the issues in Bryce's heart will fully mend over the next two months. 

Our prayer also remains that we will lean on the Lord that brought us safe thus far to carry us all through to the end.  Since our return, we have been very out of balance.  It was as if a tornado lifted us, spun us all around, then landed us on new, unfamiliar ground.  Nicole is coping with the emotional difficulties of being laid in bed all day while her kids are raised and play around her with less of her input and less of her direct interaction.  I have been trying to find solid ground again, figuratively speaking, meaning, to find a way to navigate these waters and challenges that tend to my own spiritual needs as well as the spiritual, emotional, and physical needs of the family.  And I have fallen and I have fumbled in walking by grace a time or two.  This time has really impressed me with my own vulnerability and weakness.  I am not a victim.  No, that is not what I am saying.  Far from it.  We are blessed more than we could hope or imagine.  But I have become keenly aware again of the gross limitations of my ability to pull myself and my life up by my own bootstraps.  I have become more aware of my dependence on grace and the ability of my ego to clouds its rays.  I, like Nicole, have wrestled with my limitations and I do believe that in spite of my fumbles, there is great sanctification taking place in us all. 

In some ways, seeing such grace in action can give rise to new spiritual battles.  I always wondered why I sunk so hard and so low - and I am not prone to depression at all - after my returns from Africa.  Again, I felt out of balance as if I had been taken out of a dream of giving back to the grind of getting.  And I know such an interpretation is reductionistic and even hyperbolic, meaning that there was plenty of "self" in my African work and there is plenty a chance to die-to-self as I work and serve here, but the contrast could knock me off and for a time, a week or so, shut me down.  So it can be when I receive such unmerited charity and grace that I may start to mentally punish myself, berate myself, even belittle myself for my own failure to give and to die.  It can feel like a magnifying glass is held up for my eyes only so that I might more clearly see how selfish I can be and how I have failed my Savior and His bride.  I do think that my most uncharitable moments, those unforgiving glances or words that have slid out unwanted may find their root in a sort of self-condemnation.  We have all seen others judge from their own insecurity.  We have all also seen others project their own character defects onto those not responsible.  I have been guilty of both.  I suspect most of us have.  So if events orchestrate in such a way to expose us to our own frailty, to rip out any pretense we may have manufactured, and to point to some hollow claims we may make, that can be unsettling and can stir some unforgiving defensive posturing .... or, projection.  And I don't mean to pain myself a monster.  No, not at all.  But I am also far from the sort of superman one or two impressionable souls may have perceived in me.  I can assure you, my wife is all to clear about my humanity. 

But, I want to leave it on a high note and say that these musings, and this part of our existential sojourn has begun to work new healing in myself, and, is beginning to solidify into some discernible ideas and understandings.  I am not being exposed to some of the more unpleasant bits of myself just to leave them alone.  I suppose this another one of those things that I call "God's Purging".  

True Religion is This

TTTS.  I know when we are visited by something life shaking, it forever leaves a mark.  Many things have left their mark on me, but I could not have anticipated what TTTS would have brought into our lives.  As a disease, I hate it.  You know how dreadful that feeling is when you have a sick little one, crying, struggling, calling out for help in pain … Elise fell most ill when she was young and I remember watching her bent over the toilet with a burning anger in my heart.  I wanted to turn into a renegade warrior, super mini-size and jump into her bloodstream and go into mortal combat with that bug that had laid such dreadful siege of her.  But I was powerless.  All I could do was watch the pain with pain.  Her life was not in danger.  And there were my boys, our mirror image twins slipping away from us as Bryce was rammed so full of blood his heart was falling apart and River was drying up, seemingly by the hour: trapped twin, seran wrapped in a fluidless sac and pinned with his lips against the wall, against the placenta to be precise.  Barely moving, but how could he?  Where did he have to go?  His tiny world was closing in on him and there was nothing I could do.  We held on.  We prayed.  You prayed.  We wept, shut down, spoke out, reached out, you name it, as we waited on the unknown of how they would react to the surgery we were filled with both a dread for the procedure and a passion to get through it.  TTTS is a rare condition that will forever leave a mark on us and our home.  These boys will be held high in incredible celebration when they are born.  They will be our Miracle babies.  Some of you have one or two of those.  I can now start to feel the intensity of the joy and gratitude you must have felt, might even feel today.  You can imagine how musical it was to hear Dr. Scott say that it now looked like a normal twin pregnancy in our ultrasound Monday.  Their fluid levels were about equal.  They are the same size.  They are growing neck and neck. 

It is all just starting to sink in.  At the time, some of the emotion was so intense, I did not have the capacity to process it and keep moving.  I could not fully feel it.  Both the desperation and the triumph when we first heard two heartbeats the day after – those emotions were simply muted at the time.  I am starting to further unpack the experience and process the full range of emotion we walked through.  Bits of it come to me with a different intensity and a new angle.  I will be taking inventory of our takeaways on this for months, maybe years to come.  But one thing that has struck me with some astonishment lately, something I was mulling on tonight, mulling with some sense of marvel is just what an amazing thing the true mystical church really is. 

I have met my fair share of church-burned ex-faithful.  I have haunted many a hall in AA and heard story after story of how and why one cannot call their higher power God.  Almost every one of us must have some rough patch we walked through, even the most faithful of saints, due to the hypocrisy of the carnal church.  Most every one of us has been burned, sometimes deeply wounded by a Christian who came in and made residence in our hearts, our homes, our business under the pretense of being a child of God, then, when backed into a corner, the knives came out swinging just like any other scoundrel.  And they cut.  Some have been cut by their spiritual leaders.  Some have had their overbearing parents drive them so far away from the faithful that reconciliation is not in their vocabulary.  And I have come to understand a profound difference between the mystical bride of Christ and the institution of the church. All of us “churched” folk that have healed from our scars have come to that point where we see a division.  But sometimes that line is blurred.  Sometimes the “political” church is all you can see.  Sometimes, even on the inside, the church seems every bit as sick as the world around it.  Every bit as ripped apart by self and sin.  We have affairs.  We divorce.  We are alcoholics, sex addicts, shopaholics sometimes to a similar degree as those on the outside.  I was a card punching member in good standing of a local church when I was drinking myself into oblivion almost every night and ripping my family apart with irrational anger.  I might have even been seen as a leader, at least a leader in the wings.  Communion made me uncomfortable, I even tried to avoid it.  To let it pass would be to invite questions.  Someone might come poking into my nasty closet.  To drink and eat was to deaden an already seared conscience even more.  Every time.  I cannot toss any stones at the hypocrites among us – I have ranked among the worst. 

So with that in mind, how is it that I find myself basking in all the blessings of the true, mystical church?  How is it that we have been forgiven and benefited with such grace that even those who have not met us before are coming to our house to help Nicole during the long slow days?  How is it, provided my past, that now in my present I know I do not live in 66 A.D. but I feel like I am living in the beginning of the book of acts?  This is a message I wanted some of you to know and understand.  Regardless how burned you have been, regardless how much burning you have done, the mystical body of Christ is alive and well and as in tact today as it was in the long lost days so many of us lament of the early brethren.  Is the church full of sick people?  Yes.  Is it full of ‘sinners’, yes.  Are some churches far more concerned with making people feel good and important than making God be glorified?  Yes.  Are some churches more concerned with presidential politics than with serving the broken, lost, and poor?  Yes.  Are there Fox news thumpers quick to condemn those that think differently in the church? Yes.  Is there dogma, abuse of authority?  Yes.   Is there divisiveness and rampant demoninationalism, church splitting over things as silly as a hymnal?  Yes.  There are those who line up on Sunday every bit as sick as I was when I was punching the church card.  Heaps, masses of those.  How many come to church with a hangover and blurred memory of what they did or who they were with the night before?  I don’t know.  But I was one of their lot for MANY years and I know I was not alone. 

I had no idea how hard it would be coming home with Nicole on bed rest, with our many kids and our one-year-old Eden.  I had no idea because from the time it became our apparent reality, I hadn’t the time to really think about it.  We were in survival mode.  Not planning mode.  And before we came home Crystal Middleton has launched an effort to get us quirky veggie lovers fed and folks had signed up to the end of April!  Before the first workday hit upon our return Danielle Wilke had created a spreadsheet of helpers for Nicole in the day, folks to help clean, laundry, my word, every day was covered for childcare and cleaning in the first week.  Sunday as I was walking the kids out to the car after worship, Jill came up to me and introduced herself as the one keeping Eden at my home on Tuesday.  She had not even met us in person and she signed up to help my wife and kids. Are you kidding me?  This stuff is not normal.  This  is not how normal self-seeking folks behave.  Sharon T., a woman so full of grace and wisdom that you can see it miles away will be picking my kids up one day from CCS and keeping them for two afternoons this week.  What a privilege to have such a godly woman in our home. Lucy Wykoff whose life and whose kids have been and will be a blessing to countless people for generations takes delight in keeping Eden, doing laundry, you name it.  I am talking giants of faith coming on side.  Mindy Haywood who has a house full of her own with health challenges to boot is coming to clean our house this week.  Danielle who has five kids in a house built for three is playing point guard.  Crystal, whose family is caught in a dreadful battle not of their own making cleaned our house while we were away and headed up the meal train.  A close friend brought by a large and unreasonably generous gift to help pay to have work completed on the master bed and bath.  Friends are planning in-home double dates with Nicole and I to giver her some sense of frivolity and normalcy as she lay there chained to the sofa or bed.  Geff and Jon, deacons both have already arranged to come paint our master bath. Andy, and Gene Smith who have also offered to come.  Jenand Derick Ball who called about the bath as we were leaving town. 

There is nothing exceptional about Nicole and I.  We are not the most giving, most inspiring, most accomplished, most loving, most faithful members of the community.  Our lives are somewhat quiet and somewhat constant.  We have not earned stature in our church or our community.  We are simply a part of it.  We neither stand out nor fade in.  We are part of the fabric and pleased to be woven in.  Yet the body of Christ has wrapped its arms around its own in a way that I think can only point back to those radical days so many of us pine for in the ACTS of old. 

I am wrong about a lot of things.  My opinions are about as useful to someone else as a used rag.  And I cannot say “you are wrong” and “you are right” for I am the judge of no man.  I cannot say this church is sick, this church carnal, this church political.  I can say what fruit I see.  I can see a tree with no fruit and notice the lack of fruit, but I do not know the tree.  But I have come to believe that the particular bit of the huge mystical body of Christ that we are a part of, Covenant Presbyterian Church is an unusually healthy place for sinners to find and feel redeemed because it is not a place about making us feel good, about creating high emotion or entertaining us.  My word, according to Nicole, the services can be profoundly starchy.  And yes, we have some of the frozen chosen of a traditional Presbyterian church.  But I see Christ in a hundred faces.  I see a place alive with His love.  I see people doing small but heroic things for others.  And I think, I think it is because above all, the liturgy, the hymns, the exegetical preaching, the formalities are all designed, all thought out not to attract and entertain, but to glorify God.  It is about making us right with God, not making us feel good about ourselves.  Being right with God brings a wholeness in ones self, but you don’t go into self to get to God.  You go beyond self to get there.  And I am not saying that contemporary worship, soul worship, a lack of liturgy, or any other formality cannot achieve some mystical health in the body.  Far from it!  I think it has FAR LESS to do with the instrumentation and the songs and far more to do with the heart and intent.  Are we submitting to a God-centered world, or are we creating a man-centered religion?  I am more than convinced that God can be just as glorified in African drums as he can in High English hymns.  But are we about dying to self to live as Christ or are we about conscripting the power and authority of God to make ourselves more what we want to be?  I think when Nietzsche had his madman claim that God is dead he was attacking a religion that had humankind at its heart.  He was saying that this religion of man for man has run its course.  Its days are numbered.  We have slain god by pulling back the emperor’s clothes. 

“Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.”  I think in seeing glory come through weakness, in defending the defenseless, in fighting for the life and dignity of those like orphans (think Jewish culture of old) and widows (again, think how Jewish culture of old esteemed the orphan and the widow – not very much) we are demonstrating the heart of Christ in us.  I think the best way to see the face of Christ is not by being barked at with some do this – do that, but to have a meal brought by on a Saturday night when the family is fighting, struggling for their defenseless – in our case, our unborn sons.  It is in those who come to pick up Eden while Nicole can’t, it is in those who fold laundry when they have a mountain of their own to fold.  And seeing the face of Jesus come like this into our home each day has burned a new and wonderful hole in my heart.  I am slow to learn.  Slower to purify.  It takes strong winds to move me.  But seeing the mystical body in action seems to be just as amazing as seeing your boys pull through TTTS (so far) okay.  Nicole and I don’t deserve this help and love.  But that’s just the point.  That’s just the point He is making to me as he is calling us on further to love those unloved, to help the helpless both inside and outside my home. 

Again, thank you for every word of encouragement, every prayer, every call or text or facebook post.  May we, those of us who have received amazing grace, never withhold it from those in need.  

On Grace and Gratitude

I want to give thanks.  This is a letter of thanks.  Not because we are out of the weeds with our boys in our arms, but because an amazing and wonderful thing has already occurred, many wonderful things. 

First off, we believe that had we not switched OB/GYNs after Nicole’s second tracheal dilation to Dr. Harnsberger, our boys may not be alive today.   TTTS is a killer.  River and Bryce had a 100% chance of mortality is what our nurse told us at the Fetal Care Center in Cincy.  The team, Dr. Lim, our surgeon specifically told us of cases that were diagnosed, jumped in the car to drive immediately from their hometown to Cincinnati Children’s, and by the time they got there and were rushed into laser surgery, both babies had already perished.  The advance on our boys was rapid, the assault on Bryce’s heart, the draining of River’s resource.  Dr. Harnsberger was watching us, whatching out for us like a hawk. He was performing all the ultrasounds himself, and we have being very careful and very precise.  He told us early on what we were open to as parents of monochorionic, identical twins, we had a 10-15% chance of being visited by this disease.  But Scott was aware, he was also aware that there were treatment options.  So the day I was in Knoxville and Nicole went for a routine checkup, that day he dropped everything and ran out to make calls ashen white and rushed her over to Dr. Lam’s for a second inspection by his more advanced machinery, he set something in motion that we do not believe would have been set in motion had we not moved to his care.  When Dr. Lim looked at the boys, he at first thought we were there, then he looked again and backed off.  We were on the brink, but not there yet.  The boys were 8Cm to 2.3Cm.  He sent her home but set an appointment for a week later.  Upon that visit less than one week on, we had advanced to what Dr. Lam thought was stage 2 TTTS which qualified for Laser surgery. 

We were called twice by the Fetal Care Center before that day was over. We were on the road the next day with a full day of tests set up for Friday.  That was a 12 hour day of testing and I have recounted that before.  In closed TTTS groups we had read so many heartbreaking stories.  Good one’s too.  And it seemed the most had both triumph and tragedy.  Many saw the death of one twin after laser, or, the demise of the donor after treatment, seemingly to keep his brother alive to birth.  These stories were painfully common.  We were looking for everything, every story of triumph that is.  But things were pins and needles. 

So here we are, River is in perfect health, with 3.6Cm fluid and a full or filling bladder having been pinned and shrink wrapped against the wall of the Uterus in .6Cm of fluid, on the brink of dehydration.  We were in the end diagnosed stage 3C, one tiny step from stage 4 which is common to point to permanent heart damage in one or two of the twins.  The pressure in Bryce’s heart was tremendous with thickening walls, and two leaking valves.  They referred to the damage as severe.  Even today Nicole takes blood pressure medicine for him that pummels her every six hours.  The pressure had been reduced, but one valve in the left chamber has severe leakage still.  This may or may not be attributable to the TTTS though leakage is common to stage three.  The Cardiologist and Fetal Care Surgeon both thought it may correct itself in time as his heart heals over the next 8 weeks from the TTTS.  That is one amazing thing about the womb, it is regenerative … damage done one the outside such as that would be damage lasting.  In the womb, things are plastic enough to repair.  However, the cardiologist believes the valve may be oddly shaped pointing to a congenital defect in his heart, but not one that is necessarily life threatening.  Even if the valve does not heal and seal with the heart, there is a better chance that it will not explode into a life threatening issue, and most likely will be something that will have to be monitored in him as he ages till he reaches an age when there are good options for fixing it.  But those fixes are not ideal, so as long as the heart tolerates it without turning toward demise, he will be normal.  Wow. 

So the thanks.  We are so deeply grateful to Dr. Scott Harnsberger who was watching for our boys like they were his own.

We are thankful for Tabitha, Scott's wife who not only lent her husband to us in times of crisis, but who advised, and counseled us behind the scenes and helped us prepare for what may lay ahead.

We are grateful for Dr. Lam and his connections to advanced fetal therapy in Cincinnati and Philly.

We are thankful to the astonishingly good team at the Fetal Care Center in Cincinnati, especially Dr. Lim and Dr. Polzin who performed the Selective Fetoscopic Laser Photocoagulation, Amnioreduction and Microseptostomy. 

We are thankful for the ENT team at Cincinnati who have decided against a Trach for Nicole and have decided they can perform a Tracheal Resection as a permanent fix without much risk to her vocal cords to treat her Idiopathic Subglotic Stenosis. 

We are thankful for each person that took time to pray for our boys.

We are thankful for those that took time to pray for us, hold us up as well, and send us great strength and encouragement through their prayers and words. 

We are so thankful to our home church, our brothers and sisters, who were in the feeling trenches with us during this period and kicked into action like the cavalry as darkness surrounded us. 

We are so moved by your letters, Emails, FB posts and notes and anyone who took time to make us feel like we were not alone.

We are thankful for TTTS support groups, for TTTS moms who reached out to us and advised and advocated on our behalf.

We are grateful to those that activated prayer from folks who did not even know us.  We know there are many but if you are tagged in this note, we at least aware of who you fought along side us and brought others to our cause before the throne. 

We are thankful to those that shared the picture of our boys here on Facebook asking others to pray on their behalf.  

We are thankful to our small group at church who had prepared a care package for Nicole that Crystal placed at her bedside and for the Guyton’s who did the same.

We are so thankful for Crystal Middleton, who brought her boys and cleaned and organized our bedroom while we were gone.  

We are thankful for our Sunday School class who burned up my phone with blessings and prayers in their Sunday School Hour.

We are thankful for the staff at CCS who kept loving watch over our little ones and prayed as a team for us and our boys. 

We are thankful for Danielle Wilke who volunteered to be a point guard with Nicole’s aid and for Crystal Middleton again who led the charge to have us fed.

We are so grateful for every family, mom, woman that has pledged to help provide cooked meals for us in this difficult time as Nicole is so confined. 

We are so grateful for great family, for Kelly who drove up to sit with me and then Nicole and I after surgery, for Peggers who kept the kids, for Martha, Lucy Wykoff, Martha Krabbendam, and Lynda Brown who all spent hours keeping Eden or taking Elise to gymnastics and had a hearty cooked meal for us with all our kids when we pulled into town along with a  celebratory cake.  And for Pappa Doug who has done so much around our house it can’t be listed. 

The list could go on, and on even.  But there are two even bigger points I want to make after I give the greatest thanks of all to our loving father who holds our boys and Nicole in amazingly loving hands.  Who has blessed us far more than we deserve.  Who has loved us when we scorned and loved only ourselves.  Who has taken the lashes of our rebellion in the past, and in forgiveness has paid us back with more love and more miracles than we can get our heads around.  

So here are the points.  One, we read of those who are not part of the loving spiritual body of Christ  (not the material church mind you) who are in a similar boat we found ourselves in and they are falling apart with little connection and no support.  As darkness set all around us, we felt and found a thousand points of light breaking through even in the uncertainty.  We discovered that it not only takes a village to raise a child but a village of love filled folks to save a child and save a family as they give themselves to saving their child as best they can.  For those who have not had the wagons pulled round in times of assault from the outside, I can honestly say my heart breaks for you that you may feel like you have to grab a proverbial gun and hold on paranoid for dear life.  We were able to let go and feel incredibly strong, not only because of the hands of the father who knew our boys before the fertilized egg split into two, but because those who had been moved by the creator’s unconditional love demonstrated the love of God in word and deed. 

Secondly, based upon where we stand today, and what we know, we are on the receiving end of a miracle.  Not one we had credits to buy.  Not one we earned.  But one that was given just because of grace.  We are not out of the woods, and there may be VERY difficult days ahead, but as Scott told Tab when he came home tonight – our chances just shot sky high that we will have our beloved Bryce and River one day smiling in our arms.   Grace cannot be earned.  It is not in limited supply.  It cannot be swapped like bills on the open exchange.  It is not scarce.  And any time a religious person treats it as something to be bartered for, bought, or earned, it looks rather ugly.  It’s beauty comes from the fact that it is not merited.  It’s impacting power comes from the fact that it cannot be earned.  It is given. Just given.  And it’s given to those who, like me and like my wonderful wife have done things which should have made us worm meat.  Our story is “colorful” as they say - Filled with more idiocy, stupidity, and spiritual rebellion than you could shake a stick at, but today, rather than having our wages, we have hope.  We have each other.  We have our beautiful kids.  We have our family, our life-long friends.  We have you and most importantly, we have God’s love living in us rather than the anger of old.  And today, we have our twin boys safe and sound in Momma’s tummy.