Sketches of My First Born Son

 

Dear Prayer Warriors, 

A friend reminded me that the grief never ends because we loved our child so deeply. I would like to add that my mind does a better job catching the memories that paint my son in the brightest of lights even though I clearly remember time outs and disobedience. Below is a collection of bright memories and treasures, I hope it encourages you, what a kid! 

Simon Emmanuel Currat

I often sat in silence with my Bible and a cup of coffee early in the morning. I’d smile to myself when I heard little bare feet climbing up our carpeted stairs, soon a mop top blond headed boy would peer around the stairwell to catch my gaze. Simon didn’t use words in the morning so it never felt like he was interrupting me, he knew I would be good for a morning hug. Simon greeted me this way then favored a side so I could keep on reading while he quietly stood between me and the Bible. My hand rested tenderly on his shoulder or on his head. Then after some time he wandered over to the couch to look through his Bible while I stayed in mine. Or maybe he’d pick up a pen and paper to write or draw some stuff down.  Mornings were about getting close to God, separately but at the same time. Breakfast came later. We always were the first two up. I’ll confess sometimes I wanted him to catch me in my Bible because I hoped he would imitate me.

 

Simon learned to read by the time he was 6. This came in handy because he reasoned so soundly, so inquisitively. The director of our Classical Conversations Chapter (homeschool co-op) randomly gifted him a two-inch-tall plastic owl with fine detail. She looked him in the eye and told him “I think you are wise.” As she placed the gift in his hand. Simon had cautiousness more than rambunctiousness, questions more than demands, and love over fears. We went to the library almost weekly for him. His selections made me want to be his friend. Probably the coolest book Simon ever brought home was a DIY paper airplane book with dozens of different kinds to build. We used up a ton of paper that week. Lindsey or I read every night to him and Renee because they shared a room. We got through many faith-based books, chapter books, and anything else that captured their imagination. His favorite no doubt was the Lion, the Witch, and the Wardrobe. We read the book twice, saw the play, watched the movie and had the book on CD for long trips. Every night one of us cuddled him to sleep. Once it was “lights out” I often sang a song of faith and prayed over them.   

 

Simon’s Ideation

I don’t think I ever needed to remind him that he was a leader and that Renee was looking to him for an example. Simon was generously kind to her unless he was working on something that required his careful attention. I do recall the many “stop it Renee.” She often proved to be too much for his patience during mid focus. It was just him and Anna for his first 3 years; from this he developed a curiosity that would keep him busy rather than bored. He didn’t cling to mom and dad like most kids his age. Once we moved to the Springs, Simon claimed the forgotten and neglected backyard as his lab. This yard came complete with a couple extra-large red ant hills, weeds in place of grass and glorious dirt. I wouldn’t be surprised if Simon genuinely thought he discovered irrigation and channeling water. I say this because he was so excited to lay down extra gutter, PVC pipes and connect them to a good old fashioned ditch he just dug.  He intentionally buried treasure. He had the mind of an inventor envisioning something and then passionately grasping at their surroundings to seek how the vision can become a reality. His Hot Wheel track creations taught him all day long about gravity, potential and kinetic energy.

 

I never tried teaching Simon French. But I did teach him to cook. Wrapped up in the kitchen was some of our best bonding. Like most kids, Simon grasped the dump and mix with overnight success. He also peeled a chunk of skin off with a peeler, I think that is a rite of passage. It’s his ideas I miss terribly. He knew that Anna had needs that insurance didn’t cover. So he decided that once a month or so, we would turn our house and our front yard into Best Café. That was the name for one of his grandest ideas. We would set tables in the grass as if it were a patio, 2-tops, 4-tops and a big family table. The same goes in our Living Room. I never saw it but I bet somewhere in the lost art he drafted up a map of where all the tables could go. Unapologetically he assigned me to all the cooking. And happily volunteered to get everyone’s order. The neighbors could come; he also listed church people and family members to feed. “come and eat at Best Café and leave a donation for Anna.”  We stopped short of developing a business plan. 

 

Another excellent idea that Lindsey suspects we might see on the New Earth is a water slide from the top of Pikes Peak to downtown Colorado Springs. This was another venture Simon carefully cooked up with Anna’s massage therapist. During Anna’s sessions, Simon would sit nearby and plausibly imagine a waterslide over 30 miles long. Then this middle-aged man with two grown boys was a professional at imagining the hypotheticals about the project. They would laugh and converse at what could be, they had such sincere fun dreaming this slide up together, I was almost jealous of how he made my son’s dreaming take flight. It was wonderful to listen to.

 

 

Simon sought out friendship. His best examples of friendship came from being around Anna, because he gave so much of himself. Simon always wanted to take care of Anna. He brought her toys, wanted to push her around. He could correctly dose the medicine, pour the formula and stop and start the feeding pump. We always let Anna sleep in during breakfast since she didn’t eat with us, but one day Simon decided we needed to take our breakfast into her room, listen to music and eat our breakfast there. I happily called it the “breakfast club”. By the end of the first meeting he made a Breakfast Club sign and so we had multiple gatherings mostly in Anna’s room. Once we took the Breakfast Club on the road to our front porch. It was a four-member club with Renee, Anna, Simon and me. Other than Anna, I recall a boy he had several playdates with for about 6 months and wrote a letter to once he moved away. Simon loved generously, at the homeschool Co-op he seemed much more hesitant to make friends choosing to be close to Anna instead. It didn’t help that most of the boys were older than him.  

 

Simon's Faith

Imagining, engineering, and family aside, Simon loved the homeless so much that he wanted to do something. He asked me why this existed, and I shared with him all the reasons I knew that might land someone homeless. He always expected more of a black and white answer. His little heart couldn’t understand. It made me remember that I don’t understand, yet accept it, I choose to dismiss it too often. Not so with Simon! We biked by the many homeless encampments along the river and he was deep in thought. I know God cares for the poor but Simon challenged me to see the love that I have has grown cold toward the homeless. Simon demonstrated a sense of action. Somehow I knew that driving by the panhandlers and ignoring them wasn’t going to fly anymore in Simon’s eyes. Jesus loves them and that was the bottom line for Simon. He decided to make homeless bags with nourishing food. Knowing that was a “band-aid” I decided to type up a list of places in the city that provide shelter, food, places to find employment and addiction help. We put that in each bag along with a gospel tract. Simon became a radar for spotting the homeless and so we dropped off our bags and prayed with them. In this world we will always have the homeless, but we learn to trust that God is using our “two fish and five loaves” to multiply and change lives. This life Simon lived, he lived to the glory of God.

 

When we had time to drive up just me and him to see Grandma, or to take Anna to a doctor appointment in Denver we spoke richly about the fallen state of mankind, I reasoned with him about why sin breeds addictions and a life apart from God’s design and will. Most of these talks ended with prayer, how I passionately pleaded with God that Simon would learn by listening rather than by mistakes like the ones I made. I never sugarcoated this world for him. And helped and hoped that he would see the worth in following Jesus. I spoke to him as if it was time to make a choice to follow Jesus, to hear His voice. We often blasted Toby Mac’s The Elements album. I remember a specific ride home from Denver when he asked what the lyrics of the songs meant. Then, song after song I paraphrased each stanza. It was a Spirit filled exchange and I would try to stop after each song, but he would say “what about this one.” He was my disciple.

 

Simon prayed face down to a God he knew was in the room.  Have you ever tried to teach reverence toward God to a kid? It’s hard, but here he was teaching me. His prayers were a confessional wrestling match of feelings, he thought out the words not repeating often. He always included God’s abilities and solutions. Stating often “God you could do ____.” He trusted in God’s attributes. In our prized video collection of him, we have an 11-minute video of him reading the unabridged Exodus 32 passage of the golden calf just because in Sunday school that was the story they learned about. I thought maybe he would serve God all his life. Maybe becoming a pastor or a missionary. In reality Simon did serve God all his life, it was just a short, well lived, completed mission. Simon had outward notable markings of faith in Jesus and love of the Bible. He wrote two worship songs, he honored his parents, memorized all of Psalm 23 and most of psalm 139. 

Obviously I could go on…

 

Praise God for:

-How blessed my life was with him.

-Children teaching parents.

-The life and death of Simon Emmanuel Currat.

 

Please Pray for:

-Us this next week as we remember his life and love.

-God to heal our broken hearts.

-our faith to be greater than our sorrow.

-That Scripture and particularly Heaven would speak to our hearts

-spiritual protection for us from reliving the trauma, the sense memory of that day 

A Full Fatherhood

 Dear Prayer Warriors,

 

Father’s Day brought fun and blessings to us. As I live out the remaining few hours of the day, perhaps it’s good for me to inventory my call as a father this past year and reveal my kid’s inner workings. Tonight I’m up at Simon’s Camp solo to reseal the seams of the RV roof tomorrow. The vast expanse of land before me is darkening as I write, the clouds swerve and swirl like a van Gogh painting on a golden-bluish sky. I’m tired but asking for the Spirit to stoke the fire in my soul with words of the Spirit’s insight, Biblical truth and introspection.

 

Simon continues to be a glad and dearly missed part of my life. I lived every Father’s day of my childhood as if it was just another day. After Simon’s death, I considered dismissing the day. But I have a yearning to take my family out for brazen adventures, I live with conviction to keep God in the minds and hearts of my kids daily. It helps that I get these bear hugs and drawings and doughnuts on Father’s Day too. I know God is a joy giver because He gave me kids! I remain compelled to rejoice in being a father rather than be consumed from a lost son. It is my understanding that even if I just had Simon, I would still be a father. Does a father stop being a father when death takes their kid? I don’t think so, firstly because Simon lives. Secondly, being a father holds transformative power causing irreversible empathy and other centeredness. Even if I had no other kids, my life is marked by them, and I am better because of it.

 

Renee, 6, has increasingly filled our calendar as we committed to bring her to Ballet, Soccer, AWANA, as well as a weekly homeschool enrichment day.  She continues to have moments of considerable emotional distress, many connected to Simon but also a few regarding laziness, hungry, and tired situations. We always encourage her to use her words to share her feelings, Lindsey’s patience in these episodes is praise worthy. She persists in concern while I tend to wait until it “blows over”. Or I flippantly say “your feelings aren’t the boss of you Renee.” Her trusted, shredded blankie remains a key help in these situations. Renee and I enjoy neighborhood walks together and making dinner together. She is shyer than Simon was so we are not at a Best Café level of hospitality yet, perhaps someday. This is not to knock Renee, now that she is the age Simon was when he died, it's incredible to consider how smart Simon was and I didn’t think anything of it. He was reading and writing on his own, making music and planning days out. Renee resists long periods of concentrating and Simon was attracted to them. Although you give Renee a detailed craft, or a visual exercise and she will meditate over it and want it to be perfect. Another rite of passage that is occurring is a season of back talking. Teaching respect is a whole other lesson I wasn’t prepared to teach. Pray for us.

 

Victor 3, must be in theater training because at times he will mimic Renee remarkably including back talking. It is apparent because his episodes contain the same words or gestures only about really superficial things like when I turn off the TV or when it's time to brush my teeth. Again, Lindsey considers his feelings and patiently seeks to understand while I may say, “make good choices son, lets go!” And expect him to comply momentarily. Oh to be more like Lindsey! Victor cannot separate the serious from the silly nor hold God to a level of worship or holiness without help. He often jokes about Satan like he is some play figurine and completely fictional. I struggle to know what to say in those moments. We enjoy each other, laugh often

 

I have prayed for my children more this year. I confess sometimes it’s out of fear of what they may turn into based on behaviors I see. I need to lay this down because I’m not in control, nor do I know the future. I aim to be in awe at what God can do with a life surrendered to Him from an early age. Therefore, I have become more intentional to pray for the things that will most edify them in Christ. We sing and worship frequently. They love CD’s of kids singing worship songs. Devotion times as a family have been less intentional than in the past but more organic. At dinner every night we take turns saying our “highs”, “lows” and “thankfuls”.

 

 

 

This year has been the first time I have fathered with persistent physical pain. The constant distraction caused by this has made me rely on my bride and kids far more than years before. It’s a check to my pride and ding on my daddy armor. It is humbling and humiliating to pass up wrestling with the kids, or sitting down for a board game because of pain. I found myself stretching during prayer time with God during my devotions, is this normal? The legalist might even reprimand me. As I have sought the Lord for healing, there has been some progress. He has caused me to dwell on the idea of carrying your cross and how it applies to saying “no” to physical comfort. I try to thank Him sincerely for this pain as well as the great ability I still operate with. It makes me honor my daughter Anna who has bouts with pain and it is always so hard to investigate it.

 

Sweet Anna Pie still dominates our calendar with therapies and doctors. She remains in a season of remarkable health given her medical baggage. The challenges she faces are centered around normal kid stuff, Praise the Lord. She has excessive drooling from her K-9 teeth coming in, puberty is unfolding, and she is becoming too heavy to lift. She hasn’t outgrown enjoying the silly sounds her dad makes, and vestibular input, motion remains king of the things she enjoys. Dance parties with full on wheelchair moves remain as some of her favorite things. Her face will always light up when we start singing and her voice will utter praise sounds as we sing words of praise. We still get frustrated at not knowing what’s going on when she fusses. She remains an absolute joy to be around which makes her daily caregiving needs a blessing to execute. Lindsey continues to pour into Anna on a communication level by utilizing the eye gaze device. Sometimes it's jaw dropping what Anna can express.  

 

I also wanted to mention a quick word about how in this last year I have grown increasingly taken, swept off my feet by my bride. I have become increasingly vocal before the kids especially about how gracious God is to me for having Lindsey to cherish and uplift. I think it’s an understatement when the Bible declares “he that finds a wife finds a good thing.”  What a great thing to endure together the path of life God has asked us to walk. Lord willing, we will celebrate 15 years on July 17^th. Thank you for your many prayers for us, may you be satisfied in how the Lord is continuing to answer them!

 

Praise God for:

-Anna’s weight gain. She is nearing the 50th percentile. This has been such an undertaking by Lindsey for the last year! Anna is blessed by all these efforts.

-My work. Ever since my church service was cancelled, and the uncertainty of where to fellowship was at the forefront of my problems; I let my bosses in on this real frustration that I endured. After a few months of sharing my situation I asked if it was possible to have every Sunday off. After a month of deliberation and consulting with the district level about all of this, they granted my request and threw Monday in the deal too. I consider this such a battle fought by the Lord! Now I live with His favor.

 

Please Pray for:

-the visit to the Gastroenterologist Monday (6-16) to keep us progressing on her nutritional intake and bowel movements.

-A new eye gaze device and a new wheelchair. Both are about $30,000 each. Pray for expedited favor. Remember the last chair took about 8 months in appeals ending in independent mediation to cause the insurance to pay? May the Lord fight this battle for us too.

-Mercy and Healing from God for me. Increasing nutrition and self-control as well as good, consistent habits of exercise. That I would not be disqualified from caring for Anna physically.

-intentionality in parenting. Especially in giving a biblical lens for my kids to see the world through. In grasping informal times to behold spiritual truths and giving prompt worship and adoration of Jesus and His Lordship over us.  

-July 5th. as we remember and commemorate three years since Simon's graduation. We are planning a hymn sing at Simon's camp. Come if you can! 

The Godhead Breach

 Fellowship made from grief

There is a new album out by Toby Mac and it ministers to me. Not because of the catchy beats, joyful melodies, or "fresh" lyrics; it’s because he sings about abiding in Jesus. Honestly, it’s our commonality that makes me a fan, he’s got a son in heaven. When he sings about having a grief that will be with him till the day he dies and keeping things in the rearview, it preaches to me better than a Sunday sermon.

 

God has allowed me to identify with fathers who suffer similarly and walk in faith. They are responding with hope in God's Word and that is my aim. Here’s my circle co-father's greif, a father younger than I that I still have breakfast with, a pastor on the radio, Toby Mac, Tim Challies, a mentor, a homeless man, a special needs dad, and an elder from my old church. We are all walking wounded, maybe not bleeding anymore but changed. Those events, the loss, do not define us, Jesus Christ defines us. Therefore, my loss is not all consuming. If I didn’t have the Church, I would never have experienced this brotherhood, they are not blaming God, nor mad at Him (or at least they worked through those seasons). Now they are submissive in releasing their loss to the Lord. This unity compels me in worship!

 

 “Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Philippians 1:6

 

Their Jesus factor, the way they have walked longer than me in grief compounds this sense of “if they can do it, then I can do it.” Satan wants to tempt me by comparing the variables of their situation to mine, but I have rejected that and listen to their hearts of hope amid the loss.

 

Love

Now I humbly turn to the cross of Christ to talk about the love that will not let me go. Words are lacking because there is no comparison of the loss of my son to what God the Father grieved on the day Jesus was pierced for my transgressions. It sounds weird to think of God having to “live through” something since He is the author of life and Omnipresent through it all. But He didn’t create death. God did not deserve to ever experience death because He is disqualified, He is sinless. He didn’t invent it. In His justice He allowed it as a curse for sin. Jesus went through it… “He made Him who knew no sin to be sin in our behalf, so that we might become the righteousness of God in Him.” 2 Corinthians 5:12

 

 Jesus’ Biological Father “lived through” the loss of His Son… it may have been the quietest day in heaven. Were angels telling Him "sorry for your loss."?

 

From forever God knew it was coming, the one and only time that a relational breach in the Godhead happened was on Good Friday when Jesus chose to take on our sin and die. Being the God-man, Jesus prayed “If there is any other way take this cup (suffering the cross) from me.” Jesus continues “Yet not my will be done.” Jesus’s humanity didn’t want to die, that’s not hard to understand because we don’t want to die. However, God’s prophetic Word still needed fulfilling. Since Genesis 3, He promised an atonement for sin through a new, everlasting covenant. There is no other way to reconcile God’s perfect, good, justice with mankind's rebellion.

 

The Father knew He was going to see His Son die, and He endured Jesus's suffering and death on the cross. The Father relented in preserving His Son's life because Jesus took on the curse and became sin-saturated. The Father cut off the relationship with the Son. Death won on that day, but God was in control. This sacrifice of love was a ransom payment for sinners looking to God for mercy, grace, and repentance from their sin. Forgiveness from God was fully realized, actuated and finished on the cross. What was meant for evil God turned for good. As the Scriptures attest, time went on, death got swallowed up in victory by the resurrection of Jesus Christ. The non-God bi-product, the curse and consequence of sin was consumed by the resurrection. God gave His creation a way back to Him because God loves us. 

 

The triumph that comes with the power of sin being taken away is adoption by faith. God went from having His one and only, pre-existent Son to signing adoption papers for those who trust in His Word. The signed paternal line for all the sons of Abraham, is written in the blood of the Lamb. Jesus is the firstborn from the dead, bringing many sons and daughters to glory.   The love of God the Father cost Him His Son. Jesus the sinless became filled with sin for one day and it killed Him. What a Messiah.  

 

For today’s world maybe death is too visible and the Resurrection of Jesus too invisible? Maybe faith becomes visible when the suffering Christian suffers in such a way that says “God I trust you, because Jesus did when He prayed “thy will be done.” An unbelieving world will never have faith to look at death as temporary unless the blood of Jesus becomes their lens.

 

God suffered the loss of His Son. It makes me move on without my son Simon and eager to look for the good He’s growing from this.

[Chorus]
“I've been through it, yeah
The kinda pain that makes a man just lose it, yeah
A broken that goes way beyond the bruises and the scars
This old world can be so hard
Yeah, I've been through it
But somehow You've been with me through it all”
-Toby Mac

 

Hopefully this wasn't too wordy or circular in thought. I know there may be some imperfect theology here, I welcome correction as we search the Scriptures for ourselves. I tried to write and imagine with a holy fear of God. It blesses me to spend time writing and praying on this. It's like peering into the things of God, it's all about Jesus!

with love, Nic

Remembering How God Brought Life To Anna

Dear Prayer Warriors,

 

Anna’s 11^th birthday was about a month ago. It’s surprising how this day has turned into one of the most joyful days on the calendar because 11 years ago it was the opposite. This is a foreshadowing to remind me that one day my son's Simon’s death day won’t be a day of grief on the calendar because He is hidden in Christ, promised by God to arise one day! This year I wanted to tell the story of Anna a bit more. Back when I prayed my humblest prayers and saw God intervene in His way. 

 

King over the Flood

Anna’s traumatic birth, I know some of you have been with us these 11 years. Do you all remember how inadequate I felt being a first-time father and “surprise” a special needs dad? I will never forget looking at Anna’s motionless ultrasound screen and my bride’s weeping words “it’s not supposed to be this way.” Minutes later we were told that Anna has a better chance outside the womb than inside because they found a faint heartbeat. She was born in complete silence aside from my whispered prayers in my wife’s ear, and the methodically composed surgeon talk. Anna Elizabeth looked motionless and limp. She was given a super low Apgar score of 2 out of 10 because her heartbeat held and could be detected. Do you recall the enormous storm of unfolding diagnoses in the first month? I didn’t speak doctor, so the steep learning curve of medical terms, medicines, tests, and machinery was defeating. We wanted none of it. 

 

God gave me joy amid moments of calling people to tell them Anna was born 6 weeks early clinging onto life. I was a first-time dad and no amount of complication was going to take that away from me. Perhaps it was a shock mechanism, but God used it for good. This inner city hospital was for low-risk deliveries only, there was no neonatal unit. In the Lord’s providence, on a Sunday morning in snowy Chicago there was a neonatologist sent there from Children’s hospital answering a request to check on another baby born in stable condition but needing to be evaluated. She scrubbed in and intubated Anna. We received the best of care for Anna at a place where we should not have gotten it. 

 

I got a chance to see Anna as Lindsey was getting stitched up, she still wasn’t moving but was wired and tubed everywhere. I nestled my pinky into her itty-bitty palm and sang her hymn Wonderful Grace of Jesus. In response she squeezed my finger and opened her eyes for the first time as if to say “I know you!”. As she was taken away, Lindsey got her first look at Anna through a submarine circle on the transporter. I remember her reaching through it and telling Anna how much she loved her and was going to be with her soon.  

 

 

Baby Steps, Moment by Moment

Anna was taken from her mom for 3 days. My bride Lindsey was post cesarean in “stable” condition in a Chicago hospital with full shock and trauma, grasping to comprehend things like me. Baby Anna was taken away clinging to life in critical condition 30 minutes away in an Evanston hospital. “God, who should I stay with?” I remember asking. My mind kept on trying to figure out what I should do as I cried out to God. My mind said “Anna”, my heart said “Lindsey”. It was the Lord who reassured by thinking upon His Omnipresence, “God’s at both places, He will be where I cannot be.” This thought helped take baby step #1, it helped me stop trying to control things, but to trust things. I held Lindsey’s hand as her whole body trembled for hours, I answered several calls from doctors asking for permission to do things to Anna of which they attempted to explain only moments before. Our church served as a taxi service for me, I visited Anna only after Lindsey’s blessing and once she had company in my absence. By God’s grace, I was keenly aware that no matter how unnatural, difficult and heartbreaking this was for me; this experience was exponentially more difficult for my bride.

 

Weeks went by praying for Anna’s blood pressure, for swallowing, and praising God for her soft fontanelle that allowed us to put off brain surgery long enough for her to gain weight.  In truth the NICU was one step forward, two steps back for a long time. We continued to experience a downward spiral of “no” answers to the prayers we were requesting. Because of who God is, the agenda of miraculous healing was on my mind but God had another path for us to walk and abide on. I negotiated my prayer, “No brain damage God.” Then the MRI showed extensive brain damage. “Clear her ventricles Lord so the blood clots filter out.” That didn’t happen.  “Ok, well prevent the PVL from spreading in the white matter of her brain” New images showed several holes in her white matter still expanding. I further wanted to stop things: “God you made the brain with the ability to drain cerebrospinal fluid naturally, do it please.” God said no. I remember meditating on the term “have pity” and “begging” God for mercy. I remember asking “no more diagnosis of disability” because a couple of weeks went by; In the following years came Hypsarrhythmia, Epilepsy, and Polymicrogyria. 

 

My insistence on figuring out “how God is going to help” came to a head regarding Anna’s Hydrocephalus diagnosis. According to the doctors, Anna needed a shunt installed. This was where my pleading for mercy and the supernatural healing gave way to complete surrender to God. In the dead of winter, I went on a frosty, riverside walk in the snow. Just me and the Lord. I wrestled with God about the shunt surgery, a brain surgery at 6 weeks old. It’s a procedure that comes with a 70% infection rate and 90% chance of needing revisions (more brain surgeries) within the first year. I really did not want this. The miracle didn’t come with supernatural healing, it came from within my faith, on that walk, where I let Him know how scared I was. I laid down my prayer agenda for what He wanted to do. I waited quietly wanting to learn, surrendering the last bit of tug-of-war rope to Jesus. 

 

On that walk the Lord didn’t scold me, or assert “I got this.” But he did take me in my mind’s eye to a memory I made when I was 16 on a trash dump in Manila, Philippines. I remembered kids rummaging through the Smokey Mountain trash dump and those that joined us for church that day. The horrible smell, I remember asking God that day “help me never forget this.” Just like that, on my snowy walk in Evanston, the fear of the shunt surgery was superimposed with my memory of the poor in the Philippines and this thought came: try and see the shunt surgery as a provision not a Goliath because if Anna was born in a third world country, she would not have this option and would die. 

 

Jesus gave me a peace that surpassed all understanding just in time for my daughter’s brain surgery. Sure, I still was shaking and counted on prayer warriors, brothers and sisters in Christ in the waiting room with us. God brought life! No infection or revision! Perhaps it’s a mental miracle that was granted to me, what grace that no complications arose. 

 

In looking back on the 7 weeks in the hospital, those early prayers back when it was life or death for Anna. I requested prayers for “best case” outcome every time. It was humiliating to receive so many “no” answers in prayer. I spent so much time wanting to control the situation through prayer and writing because I was helpless as a father, unable to even hold Anna. But I had to do something. I based most of my prayer “agenda” on what the medical team was telling us. So much trauma, sadness, and disbelief informed my thinking back then. On occasion, God’s character made me dream and ask prayer for big things. It was such an impossible situation to endure and it seemed to keep going on and on. God carried us. Fernando Ortega’s Hymns of Worship CD ministered repeatedly to me like a gold mine to keep my thoughts fixed on Jesus.  This verse spoke hope to me daily and we posted it above Anna’s NICU bed. “He will tend his flock like a shepherd; he will gather the lambs in his arms; he will carry them in his bosom, and gently lead those that are with young.” Isaiah 40:11. Anna’s bed had several verses over her by the time we left. 

 

I never cried so hard and for so long in my entire life. I remember typing these updates in the carpeted hallways surrounding the waiting room to the Evanston North Shore NICU. In a ball on the floor with my tablet weeping, writing, polishing determined words of hoping in Jesus. The Lord met me as I conveyed each day’s events with a tender heart hoping that my faith would be an example to others for their trials, not just a dad begging for prayer.  I remember this theme so distinctly, “Lord if this isn’t a mistake to You, equip me!” 

 

The church gave us a collective hope and mercy for Anna’s life back when things were life or death. What support we received, in love, in prayer, meals and finance. Within the first few months Anna was a literal million-dollar baby. Now my baby steps of faith have become strides that God’s glory purposes as He gives Himself glory through Anna’s continued life. To this day, I am reminded by God’s Word that the grand miracle of total healing is assured in the Lord's blessed time and hands.  

 

Praise God for:

-the people that check in with me and want to catch up to this day. 

-Direction regarding Renee’s education. We have shaped a path to allow for continued homeschooling. Thank you for your encouragement.

-Direction received about a house church in light of not being able to attend our church weekly. Currently we go to our home church when we can. I have learned and read much about house or organic churches. We hope to start a small group centered around prayer and singing for the weekends I work with a communion meal. 

-Anna’s “eye-gaze” talker. We continue to have moments where she is clearly communicating through the device as well as moments that make us scratch our heads. Lindsey has now programmed well over a hundred pages for Anna to navigate with about 8 icons on each page that speak for her. Pray for continued wisdom for programming Anna's eye gaze. To expand Anna's vocabulary. She can now choose the colors of her outfits that she wants to wear, and how to do her hair. 

-We have Anna doing horseback therapy again every week. They even allow sibling rides for Renee and Victor, they get a slice of the farm life every Thursday afternoon. 

 

 

Please Pray for:

 

-weight gain, a feeding strategy. After years of complex prayers regarding her conditions. Of late, its simply eating and bowel movements that have become the most needed prayer requests. Anna has gained 7 pounds since December. We need to get her closer to 75 pounds (another 7 pounds) by mid-summer. The problem is we are at maximum intestinal feeding capabilities. Her intestines don’t flex like the stomach does, Anna’s stomach isn’t used to being stretched without food making its way up her esophagus as reflux and possible aspiration. Pray for healing and the ability to take food into her stomach more. For these home blended feeds that we give into her stomach, that they would stay down as her stomach expands. I’m ready to crush up Cheetos and mix it in some Dr. Pepper. Lindsey promised me that is not the way to see Anna gain weight. Alas. 

 

-a healing, or a resolution to Anna’s Urinary Track Infection (UTI). We are on her 6^th UTI this winter. We have been doing homeopathic daily supplements in between doses of antibiotics. It seems like we are coming to a gun fight with a knife. Anna’s Urologist has ordered a day long test up at Aurora Children’s to measure the draining of her blatter. He has introduced to us the idea that Anna might need a full-time catheter or "straight cathing". Now that is something I would not want as her caretaker. 

 

-Regular bowel movements. Cerebral Palsy scrambles the neurological messages from the brain to the muscles which is apparent in her legs and arms. This hyper or hypo tone extends to all her muscles (remember the eye surgery to fix the teeny muscles pulling her eyeballs in different directions). The muscles in her digestive track complicate her ability to push out a stool. Please pray for wisdom to know if a surgical procedure is needed to help make stools more regular.  

 

-the right day nurse 2-3 days a week for Anna. Our current agency doesn’t seem to be able to provide that so we are starting the process with other companies. 

 

I’m thankful for the mercy of fellow believers walking with us in selfless intercession for years.

 

Celebrating Faith, Celebrating Simon

 Dear Praying Friends,

 

All praise to Christ the author and finisher of my faith. As time has gone on without Simon, so has the bouts with mourning his loss. Thinking of my son is daily but the grief, shock, and the hole in my life are less sharp. I had a good cry this morning – “Happy birthday Son”. It's become routine that I will think of him and before it unravels into despair or wishing things were different, I surrender to the constructs of my faith. I have learned to rest on these faith pillars:

 

1 Thank God ceaselessly. God is the interventionist Alpha and Omega. He is sovereign. Therefore, I count it no mistake that Simon’s days were all perfectly purposed. God has lifted up my head again and again by graciously accepting my thankfulness for the gift of Simon. For me, finding joy in this trial (as we are urged to do according to the Bible) only came through thanks. I don’t give a stubborn thanks to God either, rather a tenderhearted one. On this side of heaven, without knowing the fullness of “why”, I don’t think God is ever asking me to conclude “thanks for taking Simon from me.” Yet like the waking of the dawn, there is evidence of goodness rising from this loss.

 

Another Divine example of grace is found in the hymn we selected to sing while in Lindsey’s womb. God led us to choose Thanks to God for my Redeemer. At the time we picked it because the doctors were telling us that we may have another special needs kid. So, this hymn gave us the resolve of courage, to praise God regardless of what Simon would be like when he arrived. We sang that song often in utero, at his birth, at some of his birthdays. Unbeknownst to us, God knew how vital and precious this hymn would be in keeping us in His fold amid this valley of death. I sing it every time I visit Simon’s grave. Renee and Victor request “Simon’s song” semi- frequently. If you are not familiar with it, it has three verses, no chorus, the word “thanks” is said 27 times, and the author makes it clear to thank God for both the good and bad in life. Thankfulness is so useful in sorrow; it is spiritual armor for that valley.

 

2 Look for the Good. Like a father who is genuinely proud of the things his son accomplishes in academics, athletics, and in holiness, so I am genuinely proud of the good things that have come from the loss of Simon. They include conversions, new friendships, a bigger heart for the homeless, greater empathy for those who lose loved ones, and countless moments led by the Holy Spirit indicating Christ with us! By faith God is the author of my life; He has given me responsibilities to steward like raising kids, spiritually leading my family, and now to walk worthy of Christ without Simon. Looking for the good in my loss means I am stewarding this trail in hope and faith.

 

The most good losing Simon did for me spiritually is that it challenged me to see the Scriptures as hope for the times to come. I went to seminary to grasp a biblical worldview and to apply Scriptures to my current life, life as I know it. Now however, I found myself digging for future things as told by God’s Word. I’ve found the hope of heaven is not pie in the sky. It challenged me to think if I really do believe all these wonderful promises as actual things to come for those in Christ Jesus. Honestly, there is a choice I made early on when I asked myself, “do I really believe in seeing him again?” I long to, I want to, but that sentimentalism won’t make it happen. What does make reunion possible is that Almighty God assures it in Scripture, and He does not lie.  

 

3 Remember Simon’s contribution to my family. I have often told my kids how God created the world and all things, and He realized it wasn’t complete or good until He created them. Last year, I read most of a book that argues that the best family models in the Bible are found in the Old Testament rather than the New. The author spends time comparing and contrasting a first century family and a modern family. The role of children becomes his greatest contrast. He states that our children have become devalued and have no identity. Like it's up to them to find it, rather than to base their identity on the family context. Feeling depended on is tremendous to a child. So I prayed asking what that means when a child is no longer with us. Does he remain vital to the story of the family and its unity? I have become passionate to know that my son still serves a purpose and plays a role in the lives of our other children. By God’s grace, this shows up every time we dream and wonder what Simon is doing in heaven. His heavenly status brings our minds to visit the goodness of proper reverence and worship and song.

  

I have a personal note about Simon’s continuing role as my son. Simon spent his life often seeking my approval and seeing if I was proud of him. I thank God that I can honestly say that he knew how delighted I was to be his father. What’s interesting is that the bible gives examples of moments when people in heaven receive glimpses into the ongoing affairs of the earth. By faith, I find that the tables have turned; now I am the one hoping that when Simon receives a peek from his heavenly disposition, that he would approve of my life here on earth and be proud of me. Yes I know that theologically that ultimately it doesn’t matter.  However, this change of role compels me to take the high road in trials because I taught him about faith. 

 

4 Keep singing and talking to God.

Thanks for walking with us. 

Nic, Lindsey, Anna, Simon, Renee, and Victor

Wisdom Needed

 Dear Those Who Pray for Us,

As many things compete for our time before the Lord in prayer, I humbly ask to include us. There are a few concerns I bring before you to inquire of the Lord’s help for us. I know that some of you reading don’t believe or pray, but by God’s grace perhaps this bit of honest examination and honest storytelling is the point of view that may help you reconsider who Jesus Christ is and take a closer examination.  

 

God’s Call for Homeschooling or Public School

Having Anna brought surprise after surprise. Lindsey always felt that being a public school teacher was her way to honor God. Surprise! Apparently not, Lindsey humbly accepted becoming Anna’s primary caregiver and became a certified nurse’s assistant. When Anna was 4 we put her in a special public school dedicated to special needs kids all the way until they were 21. Our experience there led Lindsey to pray and ask God if homeschooling was what He wanted for Anna and Simon. She felt God’s direction to keep them both home.

 

About two year later we joined Classical Conversations, a global homeschool curriculum with a co-op, it was just the right added support and things were going well during Simon’s Kindergarten year. I recall her eager focus to take the training wheels of kindergarten off and dive head first into first grade. Afterall, Simon loved learning and questioned so intelligently. By the time summer came, Lindsey had organized and ordered everything she needed. There was a cabinet filled with the great expectation of answering her call as a homeschool teacher. I couldn’t tell who was more excited for school to start Simon or Lindsey. I remember them together cracking open the books to preview what the new school year would bring. Simon died in July and that cabinet, much like Simon’s room, became a ghost town, a memory of things that once were so certain.

 

Renee is entering the first grade in September and we are at a loss of what to do. Does the homeschool life extend to Renee and Victor too? Lindsey anticipates Renee to need more tutoring and “hand holding” than Simon did, praise God.  Renee brings so much to the table and with the right guardrails she will flourish, as of now we are assessing what those are.  One of the harder issues is that she subconsciously demands Lindsey’s attention and will be physically clinging to mom especially when Lindsey is attending to Anna’s needs. Lindsey has helped me see this scene play out, it’s telling me that traditional homeschooling and caregiving have too much conflicting demand for us. The stress and exhaustion are too high on a daily basis. Let’s not forget our amped little Victor who brings another set of needs on top of this.

 

The two clearest paths we see is either to enroll Renee in public school, or make enough lifestyle changes to live off of one income allowing for homeschooling because the charting house would go to a daytime nurse to meet Anna’s needs (which is a provision our insurances would cover). Please pray for the Lord to give us a united conviction about what to do. That He would guide our steps, perhaps we haven’t considered everything.

“We don’t know what to do, but we look to You.” 2 Chronicles 20:12b

 

Embracing Family

When I think of people that usually show up on moving day, I think of family. When I think of those who show up at the hospital, I think of family. When I think of who helps pay for college tuition, I think of family. When I need direction in home improvement or auto needs, I think of my family. When I am short on cash, family. Need a hug, family. Encouragement, family.

 

This past weekend, I got the blessing of visiting the church that I found in the Yellow Pages the week I put my faith in Jesus. The one that gave me my first memory verse, that allowed me on their softball team (big mistake), the church where I once trimmed the bushes in the parking lot, helped in AWANA, served in the youth group. More significantly still, it’s the church where I got discipled. Where I got baptized. Where I got prayed for, married at, and loved on. 

 

One of its living stones got promoted and I was there to celebrate his life with them. It had been close to 6 years since my last fellowship with them. As I observed the aging souls in the room, I was reminded! Reminded of Ken and Kay who made a rail for my condo patio so Simon wouldn’t wander into the busy street we lived by. I saw Kyle who showed up at our address on moving day to help us move, I had never met him before that day. I saw Paul, my co adventurer who I went to Honduras with to build a church, preach in jail, dedicate babies, and baptize new believers with. I saw Harold and Imogene who demonstrated family love to us with a wonderful turkey dinner at their condo in mid-summer. They may hold the record for most greeting cards sent to us after we left. Matt was there, he eagerly discipled me. I’ll never forget when he slapped two books down before me and said “we can go deep with the Cost of Discipleship or we can go light with Wild at Heart.” Pastor Jack was a sight for sore eyes, instantly I was reminded that it was his hands that pulled me out of the waters of the indoor baptistry in his fly-fishing waders on.  I got a tap on the shoulder from Terri who encouraged me, and though I never spent much time with her, she reminded me of her widower father who at the time invited me to his house for a burger just me and him many years ago. Then I was reminded of the many who showed up when I had my first alcohol free party, it was a house warming party. I remembered those who showed up to Simon’s funeral. I remember the minivan that they bought, the master’s degree they helped fund, the wedding they hosted for me.

 

Sorry if I went a bit long, honestly I’m leaving out much, much more. The point I want to illustrate is this: Biblically the church is family. It is a notion I have hesitated to embrace and I want to repent from this attitude. Belonging to a super large church helped me resist the biblical mandate that fellow believers are to be loving and family to each other. The “nature of the beast” of a big church is that you are only as “family” as you want to be.  No doubt many at my big church considered me family, they would say it from the pulpit quite a bit. But did I consider them as part of my family? I want to write carefully here because I know full well that when I was at my most helpless, in the loss of Simon, they were called upon and stepped up as a family does. So much time and love were given to make sure we were not stuck in despair. So many prayers. It’s a time in my life that I am not far away from, and the debt of love I owe is noted! I am eagerly watching to see where this loving fellowship is going because they are looking to highlight this family characteristic this year by promoting small groups to front and center. We are continuing on when we can at our current church (a week from Sunday I should be able to go.) 

 

I share all this because this is where the Lord has parked my thoughts about starting a house church. A holistic, not rushed time with the family. Yes, it is a church often with a meal time, down time and unscripted family time. It's hard to think of family as inclusive rather than exclusive, pray for me. Perhaps that is how family is kept from being an idol, when we see it as inclusive as Jesus' sacrifice for forgiveness on the cross. I am pressing onward in the direction of joining/growing a house church by many affirmations. Firstly, by praying about it. I'm not sure if it's a sign but our family devotion times have been tremendous of late, well attended by the Holy Spirit! Those who know me well like my bride, mentors in the faith, and old seminary buddies all have encouraged me onward. Books like Letters to the Church and Reimagining Church have helped me have biblical convictions to motivate the cost of such a church. I see my Chicago years serving at the inner-city church in a new light as they were holistic to the max. Another notable occurrence is the Enemy attacking my thought life and would like to point out that “I am not a good enough Christian for the high demands of this kind of church. “You don’t want messy.” It has led me to inventory my spiritual gifts and training. It brings a smile to my face to remember that God is faithful in using the least likely. Pray for me, my “to do” list in this regard is to pray, seek humility, revise my understanding of “family” and do discipleship daily.

“Now that you have purified yourselves by obeying the truth so that you have sincere love for each other, love one another deeply, from the heart.” 1 Peter 1:22

  

The Grief of Anna

I praise God for Lindsey, she is the one with her “ear to the ground” picking up on the emotional need of my kids and leveraging resources accordingly. If you have been alongside us since Simon’s death, you will recall the acute difficulty of helping Renee grieve while we grieved as well. To a fault, I didn’t consider Anna and her sorrow because she cannot speak or write. Her presence throughout these years has been peaceful and gracious. By God’s grace, we have introduced her to her “talker” (the eye-gaze device). And 4 months ago we switched to a certified clinic specializing in this technology. Anna’s growth in letting us know how she feels and how we can better serve her is significant. Allow me to explain her talker a bit more, a two second eye-gaze equals a click of the mouse on a computer, once selected the eye gaze audibly announces her selection to us. Like a computer, you can click on an icon and then sub options appear. About two months ago, Lindsey added an icon that said “I miss Simon.” Anna kept selecting it. So Lindsey decided to make a whole page of sub icons beyond that one: “play one of Simon’s songs.” “I want to see pictures of Simon.” “tell me a memory of Simon.” “I want to go to the cemetery.” She gazes on them to express grief. The page can only be accessed from her home page if she gazes on three different sub icons, it takes a considerable amount of intentionality to get to Simon’s page and to click on those things. Yet Anna navigates to that page all the time. It humbled me and made me feel so oblivious to her sorrow in losing her best friend Simon. Other than mom, nobody spent more time with Simon than Anna.  

 

-Pray for Anna to grow in using her talker. We are switching Anna’s Physical Therapy from home to clinic, at the same place she did Horseback therapy because she used her talker to tell us she missed going there. We want to show Anna that we are listening to her. That is the key, that the listener would believe her. I struggle with this sometimes.

-Pray also for Anna for a high quality, in-home Occupational therapist.

-Also, Anna is currently on her third urinary tract infection, pray for healing so that we would find the cause and relieve her from this, we are not excited to add another daily medication.

-Lastly, please pray for Anna to gain weight. She was in the 12^th percentile two months ago, now she is in the 6^th. With puberty starting in another year or so, we were advised to load her up. It is difficult given her eating routines and the refluxing.

“LORD, be gracious to us! We wait for You. Be our strength every morning and our salvation in time of trouble.” Isaiah 33:2

Thanks for reading and praying,

Nic