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From Butterfly Skin To Baptized Saint

For all the (deserved) negative press it receives, one of the things I love about Social Media and Facebook in particular is how effective it can be at raising awareness about various people and issues.

Take, for instance, a video I saw just saw yesterday. Apparently, it's nothing "new" per se, but it's the very first time I have ever heard or seen anything about this person and this topic.

There are children who suffer from a rare skin disease called Epidermolysis Bullosa (EB), which is also commonly called "Butterfly Skin" since the disorder causes the skin to be as frail as butterfly wings -- it tears and blisters just by a soft touch!

This is a genetic disorder in which the layers of the skin don't anchor together properly, causing friction that leads to massive, painful blistering at the slightest scrape or bump. Apparently, the condition even spreads to the inside of the body so these kids have to be careful to watch what they eat too.


EB is caused by a defect in the genes that make Collagen, a connective tissue that allows skin layers to adhere to each other. It's a protein that makes loops that are like velcro that attach the upper layer to the lower layer and when that velcro is missing, the layers slide against each other and cause blisters.

About 20 in every 1 million babies born in the U.S. have EB, which comes in several forms and can range from mild to severe, experts say. That means between 25,000 and 50,000 people in the U.S., mostly children who are otherwise referred to as "Butterfly Children," are living with the condition. Left untreated, EB results in painful disfigurement and early death, typically before the age of 30.

Recently, I was introduced to the story of John Hudson Dilgen. John suffers from EB and his story has made national news for the last several years. Here's what he and his parents go through each and every day...




I was thinking about what it must be like for children like him and their families.

Personally, I don't know how families get through something like that without faith in God.

However, let's be honest here. There are just as many Christians as there are non-Christians who really have no idea about to respond to such pain and suffering in this world, especially when they experience it first-hand or simply see it in the daily lives of babies and young children.

Can you blame them? A majority of "Churchianity" (a.k.a. Mainstream Christianity/Pop Christianity) is so vanilla and watered-down that those who are tasked with teaching God's Word to God's people fail to do an effective job of teaching them what it has to say about the "hard things" like this in life.

I mean, what do you do? What do you say? Does anything ever really help? Those are the questions I'm willing to bet that most contemporary Christians have today when something like this comes up in conversation.

Sadly, far too many are taught that Christians are supposed to be "happy" and "strong" all the time and that they should "never, ever" complain about anything much less admit to any kind of "struggle" in their lives (even if it's a disease like EB that they can't control), because that would mean they'd be admitting publicly that they aren't "Living Their Best Life Now!" or that they're not able to access "The Victorious Christian Life" for some strange reason, and so they certainly aren't like everyone else. What a tragedy.

Just imagine the anxiety, the pendulum constantly swinging from hope to hopelessness, the fear, the frustration, the pain, the...the list goes on and on! Worse, there are far too many Christians who will do further damage and place even more of a burden upon these poor souls by telling these children and their parents that their affliction and suffering must be due to them being punished by God for some sin, must be due to some lack of repentance, must be due to a lack of faith, and/or must be because they simply aren't praying the right away.

Trust me, I know some so-called Christians who engage in this type of un-Christian behavior by expressing this type of un-Christian mentality.


John 9:2-3 (ESV) And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him.


How soon they forget that exchange and those words from Jesus' Himself!

Yes, sadly, even people back then believed that suffering of any kind resulted from a specific sin. The man's blindness would therefore be punishment for a particular sin of his parents or some sin he committed in the womb. Not so. God allows suffering and brings healing where and when He wills. In this case, Jesus doesn't merely restore the man's physical sight, but He delivers him from spiritual darkness too.

Now, I don't know if John and his parents are Christians, but I do know the truths I would try to comfort him and his loved ones with if I ever got the chance to.


 

Philippians 4:6 (ESV) do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

Revelation 21:4 (ESV) He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

"Dear Heavenly Father, I know You are the God who loves me, yet my life is a struggle. I am plagued with disease and pain, disability and incapacity. I cannot do for myself and am but a burden to others. I do not doubt that You care, for You sent me Jesus. You encourage me to ask and I shall receive. However, You never promised what I would receive. What I have received seems so far from what I would desire. Your Word says that if earthly fathers can give good gifts to their children, how much more will not the perfect Heavenly Father give good gifts to His children. Knowing these things does not make me trust them. Teach me, Lord, to believe Your Word. Remind me that my troubles are not from You. They are the work of Satan and the curse of sin. But I know that You know that curse of sin, for Jesus bore it on the cross for me and for all mankind, that I might have victory over it. Help me to grasp the meaning, the joy, and the inheritance of bliss that is mine in that cross. Let me see the grace of my Baptism, wherein I was made a member of God's family receiving forgiveness, life, and salvation. Help me to trust the promise of salvation and with it all your other promises, especially Your promise 'I will never leave you nor forsake you' (Hebrews 13:5). Let these things sustain me in my daily struggle, in Jesus' name. Amen." 
-- Lutheran Book of Prayer "Of One Suffering Chronic Illness Or Debilitation"


This is most certainly true.

Last month, John and his family received an amazing gift from their local community.

This month, I will pray that they receive an even more incredible free gift -- God's free gift of salvation -- if they haven't already. Why? So that they can find true hope and peace in the Word of God I just shared and find rest knowing what the future holds for them.

Jesus Christ knows what it means to suffer since He suffered upon the cross and bore the full penalty for our sins just so that He could win forgiveness and freedom from death for you and for me.


Isaiah 53 (ESV) Who has believed what he has heard from us? And to whom has the arm of the LORD been revealed? For he grew up before him like a young plant, and like a root out of dry ground; he had no form or majesty that we should look at him, and no beauty that we should desire him. He was despised and rejected by men, a man of sorrows and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. Surely he has borne our griefs and carried our sorrows; yet we esteemed him stricken, smitten by God, and afflicted. But he was pierced for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his wounds we are healed. All we like sheep have gone astray; we have turned—every one—to his own way; and the LORD has laid on him the iniquity of us all. He was oppressed, and he was afflicted, yet he opened not his mouth; like a lamb that is led to the slaughter, and like a sheep that before its shearers is silent, so he opened not his mouth. By oppression and judgment he was taken away; and as for his generation, who considered that he was cut off out of the land of the living, stricken for the transgression of my people? And they made his grave with the wicked and with a rich man in his death, although he had done no violence, and there was no deceit in his mouth. Yet it was the will of the LORD to crush him; he has put him to grief; when his soul makes an offering for guilt, he shall see his offspring; he shall prolong his days; the will of the LORD shall prosper in his hand. Out of the anguish of his soul he shall see and be satisfied; by his knowledge shall the righteous one, my servant, make many to be accounted righteous, and he shall bear their iniquities. Therefore I will divide him a portion with the many, and he shall divide the spoil with the strong, because he poured out his soul to death and was numbered with the transgressors; yet he bore the sin of many, and makes intercession for the transgressors.


Christ is our suffering servant King! May we all commit this passage to heart. Few places in Scripture describe God's surpassing mercy for you, for me, and for all mankind in so touching a manner.

As I listened to John's story and that of others who live with EB, it's hard as a Christian to not think of my suffering Lord and Savior. It's also tough not to prayerfully consider the butterfly symbolism present in this story and its connections to our cherished and shared faith too.


The Easter Butterfly 
There are many symbols around the Easter celebration from Easter eggs and hot cross buns to Easter lilies and Spring flowers, and even the Easter bunny. Some are very helpful in the celebration of the new life in our risen Lord Jesus, while others may be a little confusing (like a bunny hiding chicken eggs!). I think the symbol of the butterfly is one of the more helpful ones. Its whole life cycle is meant to symbolize the life, death and resurrection of Jesus. The first stage is that of a caterpillar which might represent Jesus’ earthly life as truly a man. The second phase is the cocoon stage, depicting Jesus’ death and burial in a tomb. The glorious third stage is that of the beautiful butterfly representing Jesus’ victorious resurrection from the dead. What a meaningful symbol of the life death and resurrection of the God-man, Jesus! With this in mind, consider the following butterfly parable: 
"As a butterfly soared overhead, one caterpillar said to the other, 'You'll never get me up in one of those things.' Yet for every caterpillar the time comes when the urge to eat and grow subsides and he instinctively begins to form a chrysalis around himself. The chrysalis hardens and you'd think for all the world that the caterpillar is dead. But one spring morning the life inside the chrysalis begins to writhe, the top cracks open, and a beautifully-formed butterfly emerges. For hours it will stand stretching and drying its wings, moving them slowly up and down, up and down. And then, before you know it, the butterfly glides aloft, effortlessly riding the currents of the air, alighting on flower after gorgeous flower, as if to show off its vivid colors to the bright blossoms." 
On Easter morning the disciples saw Jesus' grave clothes lying on the cold slab. Only the corpse was gone, much like an empty chrysalis deserted by a butterfly who has left to soar free. "He is risen as He said," an angel told the incredulous disciples. Later that day he appeared to the disciples, and then, over the course of the next few weeks, to as many as five hundred people at one time. Even "Doubting Thomas" didn't doubt for long that Jesus was really risen from the dead. Jesus' resurrection from the grave is God's proof to us that death is not the end. He conquered death and the devil, and paid the price of sin. The empty tomb and Jesus' Spirit within us testify that Easter morning is God's triumph over death. And ultimately, Jesus promised, God will raise from the dead all who believe in His Son. 
Why do Christians gather to celebrate Easter morning? To show off their fine clothes or give a ritual tip of the hat to religion? God forbid – but sadly for some this is true! Rather we gather to celebrate Jesus' victory over death itself. Since He is our Lord and our Savior with whom we are united through Holy Baptism, His victory is our victory! In celebrating His resurrection we celebrate our own assurance of ultimate triumph over death and the hope of eternal life! 
-- Pastor Dennis Krueger


"He is our Lord and our Savior with whom we are united through Holy Baptism."


Ephesians 4:4-6 (ESV) There is one body and one Spirit -- just as you were called to the one hope that belongs to your call -- one Lord, one faith, one baptism, one God and Father of all, who is over all and through all and in all.


Through Holy Baptism we are joined with Christ, become members of God's family, and are given a new birth and new life unto eternity in the presence of God!

In a Lutheran layman's terms, in a sense, we all have a desperate need to be redeemed and transformed from "Butterfly Skin" to Baptized Saints as the Lord saves us from our sinful flesh and dresses us in His white, unblemished robes of righteousness.

To see more about John Hudson, visit YouTube and search for "The Boy With Butterfly Skin" or visit The Jackson Gabriel Silver Foundation.



NOTE: Please understand that I'm not a called and ordained minister of God's Word and Sacraments. I'm a layman or just your average everyday Christian, Corporate Recruiter, Husband, Father, Friend who lives in the "City of Good Neighbors" here on the East Coast. As another Christian Blogger once wrote, "Please do not see this blog as me attempting to 'publicly teach' the faith, but view it as an informal Public Journal of sorts about my own experiences and journey, and if any of my notes here help you in any way at all, then I say, 'Praise the Lord!' but please do double check them against the Word of God and with your own Pastor." To be more specific, and relevant to the point I want to make with this disclaimer/note, please understand that I'm a relatively new convert to "Confessional Lutheranism" and one who recently escaped an American-Evangelical-Non-Denominational mindset a little more than 4 years ago now despite being a Christian my whole life. That being said, please contact me ASAP if you believe that any of my "old beliefs" seem to have crept their way back into any of the material you see published here, and especially if any of the content is inconsistent with the Bible, our Confessions, and Lutheran doctrine in general (in other words, if it's not consistent with God's Word, which our Confessions merely summarize and repeatedly point us back to over and over again) so that I can not only correct those errors immediately and not lead any of His little ones astray (James 3:1), but repent of my sin and learn the whole truth myself. With that in mind, please be aware that you might also discover that some of the earlier/older pieces I wrote for this blog back in 2013 definitely fall into that "Old Evangelical Adam" category (and they don't have a disclaimer like this) since I was a "Lutheran-In-Name-Only" at the time and was completely oblivious to the fact that a Christian "Book of Concord" even existed (Small/Large Catechism? What's that!?!). This knowledge of the Lutheran basics was completely foreign to me even though I was baptized, confirmed, and married in an LCMS church! So, there are some entries that are a little "out there" so-to-speak since the subject matter was also heavily influenced by those old beliefs of mine. I know that now and I'm still learning. Anyway, I decided to leave those published posts up on this website and in cyberspace only because they are not blasphemous/heretical, because I now have this disclaimer, and only to demonstrate the continuing work of Christ and the Holy Spirit in my life (Hebrews 12:2; Philippians 1:6). Most importantly, please know that any time I engage in commenting on and/or interpreting a specific portion of the holy Scriptures, it will always closely follow the verse-by-verse footnotes from my Lutheran Study Bible and/or include references to the Book of Concord unless otherwise noted. Typically, I will defer to what other Lutheran Pastors both past and present have already preached and taught about such passages since they are the called and ordained under-shepherds of our souls here on earth. Finally, I'm going to apologize ahead of time for the length of most entries (this disclaimer/note is a perfect example of what I mean! haha). I'm well aware that blogs should be short, sweet, and to the point, but I've never been one to follow the rules when it comes to writing. Besides, this website is more like a "Christian Dude's Diary" in the sense that everything I write about and share publicly isn't always what's "popular" or "#trending" at the time, but is instead all the things that I'm studying myself at the moment. For better or for worse, these posts tend to be much longer than most blog entries you'll find elsewhere only because I try to pack as much info as possible into a single piece so that I can refer to it again and again over time if I need to (and so that it can be a valuable resource for others -- if possible, a "One-Stop-Shop" of sorts). Thank you for stopping by and thank you in advance for your time, help, and understanding. Feel free to comment/email me at any time. Grace and peace to you and yours!

About JKR

Christian. Husband. Father. Friend.

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Thank you for visiting A Lutheran Layman! Please feel free to leave a comment or a question since we do not exercise censorship. We've seen a similar policy with other blogs and it's worth repeating: Please act as if you're a guest in my home, and we'll get along just fine. I think anyone would agree that the kind of back-and-forth that is characteristic of blogs/chat forums and social media is becoming tiresome for all of us. Still, we should confess, edify, and love (and contend and defend when needed). Bottom line? Search the Scriptures! Apply Acts 17:11 to anything and everything you find here and, if you do happen to disagree with something you find here (which is certainly ok), or think I'm "irresponsible" and "wrong" for writing it, then please refute my position by supporting yours with Scripture and/or the Confessions. I don't think that's an unreasonable request, especially for those who identify themselves as "Christians" here, right? Besides, Proverbs 27:17 tells us "Iron sharpens iron, and one man sharpens another" and 2 Timothy 3:16 says, "all Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness." If you have an opinion that's great, I welcome it, but try to support it using God's Word. I mean, if the goal here is to help us all arrive at the truth of God's Word (myself included), then it should be easy to follow through on this one simple request (I'm talking to all you "Anonymous" visitors out there). Grace and peace to you and yours!

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