Vapor Mist Life

These are some crazy times we’re living in, amiright?! If nothing else, can the world just agree that we’re all crazy and it’s not a contest? No matter where we each land on today’s [feisty] hot topics like masks v. naked faces, vax v. no vax, freedom to choose v. mandate everything – there’s many a topic we could choose from to get divisive about. Christians and non-believers alike are fired UP about any and all of the topics and which is right, who is dumb, how it should be… and it seems like no one in any of the camps is having stage fright speaking their mind and reminding you that if you don’t agree with their stance, you are literally THE worst. 

I wonder, though, what would happen if we Christians were this passionate about reminding people that there’s actually an eternal life we should all be worrying about more than this current one we find ourselves in. The Bible tells us like it is – this life is but a vapor. It is a mist, that appears and then is gone. And once it vanishes, it’s on to the actual life that this quick, dress rehearsal one was preparing us for. “…What is your life? For you are a mist that appears for a little time and then vanishes.” James 4:14

Insert spoiler alert here – we are all terminal. We will all die. Every single person you meet on this earth will spend eternity somewhere. Either in heaven or in hell. Why aren’t we screaming it from the rooftops?! Why isn’t that on the newsfeed blowing up your phone? Because the enemy is real and his tactic is to steal, kill and destroy… #oldnews. He’s stealing your peace and killing your hope and destroying your relationships. And we’re just standing around letting him. Well, I, for one, am done. 


If you are a Christian and you believe the Bible, we are instructed (repeatedly) not to fear. Should we walk around and lick doorknobs and be reckless? No. But we should be so focused on making disciples and sharing the Good News (aka the GOSPEL) that clickbait headlines about all the horrible ways we’re going to either die or inadvertently murder everyone we know and love would be irrelevant to us. We are supposed to be living on mission! If we truly love our neighbors, wouldn’t we be sharing Jesus and letting our lost friends know there’s a way to ETERNAL LIFE through Jesus Christ rather than making an idol out of this vapor mist life?!

The situation is this – God is holy. We are not holy. We are all sinners condemned to die. Even if you’re a “good person” and your “family is Christian” and you “go to church” and you “are kind to people #beakindhuman”. The Bible says there is no one good, no not one –  “And Jesus said to him, ‘Why do you call me good? No one is good except God alone.’” Luke 18:19 

But God, in His infinite love and provision, sent His son Jesus to pay for our sins by dying on a cross. Your sins will all be paid for – either by you in hell, or by what Jesus did on the cross. He offers up a free gift to anyone willing to admit they are a sinner and repent and come to Him. Jesus overcame death – after He died on the cross, He came back to life three days later and conquered death, making a way for those of us who accept His gift to live eternally. And not only that, but to have the peace that only He provides as we live out our days on this earth with His Spirit indwelling us.. “Your eyes have seen my unformed substance; and in Your book were all written the days that were appointed for me, when as yet there was not one of them….” Psalm 139:16. God has numbered our days before we were even born and we can rest and trust Him. We can trust that the God who created the entire universe and numbered every person’s days before He created them, is trustworthy and true. Let’s all decide to focus on our mission here on this planet – to love God and love others, to go and make disciples and to share the Good News! .

Easter Memories Old and New

Fourteen Easter seasons ago Ryan and I were processing the information that had just been handed down to us from a perinatologist in Austin, Texas informing us that our son had spina bifida. Finding out that something is wrong with your child is completely overwhelming. I’ve said before in that moment, there was really no going back to life before hearing that diagnosis. From the way I saw it, there were three different endings; all of them difficult.. If we chose to terminate, which was offered to us as a “treatment”, I’m not sure how you heal from that. If our baby ended up dying in utero or at birth, I’m not sure how you heal from that. Or, if we chose to educate ourselves on his diagnosis and then try and give him the best chance at life, I’m not sure how you heal from that. There is no handbook for this.

This [Holy] week, we are approaching Easter weekend, 14 years after receiving our original diagnosis and Hayden is currently inpatient in a pediatric ICU dealing with multiple acute diagnoses. (And this, coming off of a full week of all eight of our family members taking a turn with a brutal stomach bug.) We were already living on little to no sleep and then Hayden‘s stomach bug transitioned into respiratory issues, and pneumonia and a virus and also a UTI. He had been feeling pretty miserable for quite a few days and since we know when to fold ’em, we took him to the ER for admission into PICU late last week..

We’re writing our own handbook as each day and month and year passes by. I’m constantly being asked questions about Hayden‘s care or Hayden‘s needs. Every.single.month someone from Medicaid calls me and asks me what appointments Hayden has been to, if there have been changes in his care, if he has any new diagnoses. None of these are things that I chose nor would I pick to be doing. But, it is the reality of trying our best to give Hayden the best life possible. And I have to say, I’m pretty dang proud of the life he is living.

Not only has he taught me countless lessons about life and made me a braver, more confident caregiver and advocate, but he has put a spotlight on our family. And now that we’re in plain view to the world, we will to point the world to Jesus. I will never stop saying that I hope and pray when people look at our family and everything that we’re doing and the chaos of it all, that they only see our JOY and I want more than anything for them to know that the source of that joy is JESUS. What better time to remind the world than with Easter weekend approaching in a few days?

Fourteen years ago on Easter weekend, my world was falling apart. But around 2000 and so years ago on Passover weekend, Jesus‘ world was falling apart and yet also falling into place. It is because of Easter weekend that our family has the hope that we have. Because, you see on Easter weekend after He was murdered on mine and your behalf, Jesus was buried in a borrowed tomb, but only for three days. He was resurrected on the third day and overcame death! And in so doing, he has given my family, and your family, the chance to also overcome death. Because of the gift and good news of the gospel (i.e. Jesus died for our sins and rose again and now we have a free gift for the taking), we have hope in eternity. So, when I watch my son lay in his hospital bed feeling miserable or I see him struggle in his wheelchair because of his inability to walk, or when I see his Autism diagnosis get in the way of he and his peers interacting, I do feel grief for what is lost on this earth – but beyond that I have joy. Because I know that no matter what happens on this planet, because Hayden has accepted the free gift of salvation that Jesus offered to him, Hayden will have eternal life in heaven and will be restored one day. I know that with 1000% certainty. I just wish that everyone else would come to know that, too. Look at this child, look at our family and see that there is something bigger than yourself and this world, and that there is a source of life and hope and joy.

So coming into this Easter weekend, I am thankful. I am thankful for all the years I’ve had with Hayden, I am thankful for the platform to share Jesus. I am thankful that God can turn ashes into beauty. I am thankful that 14 Easters ago my world and I knew it was ending. Because when my world ended, my life was actually able to begin. I pray that our family will bless you and encourage you and have you seeking truth. For me, it took an earth shattering event to wake me up to how wonderful God‘s plan is. And if sharing our truth and our life with the world brings one more person into communion with God, then every single tear that I’ve cried over the span of 14 years was absolutely worth it.

The only thing that matters, is you knowing Jesus. Knowing His love for you and the sacrifice He made for you. There is no time like the present. I can tell you firsthand, life is short. Don’t put off another day coming to know the Lord. And not just so that you get to go to heaven. Yes, that’s great.I hope we get to be neighbors and hang out together for eternity. But please don’t just be after Jesus for His stuff. Be after Jesus for Jesus. He makes each day worth living and coming to know Him more and more each day has been the greatest gift of my life.

“If you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved.” Romans 10:9

Blunt Force Truth

My D Group (Discipleship Group aka Bible Study) is studying Revelation right now. It’s intense. This is by far the hardest study I’ve participated in and I’ve done many studies on Revelation and end time events before. This one is stretching me (and our whole group) in ways I wasn’t really prepared for. And thankfully, end time events is an “open handed” issue – meaning salvation doesn’t depend on nailing the order of these events or knowing if they’re literal or imagery. But it’s still hard. And sometimes I want to just quit because it’s hard. And honestly, I’m a lazy American who sometimes just wants to quit when things are difficult. But I’m not going to.

I’m about 8 weeks in to this study and I’ve delved deep in all kinds of wrath and judgment (all justified and totally due), but do you know what the saddest part has been to me? There’s one line in the passage we covered last week that states, “They did not repent of their deeds.” Rev. 16:11 God is pouring out His wrath which most people will say is so mean and terrible; but it’s actually God’s MERCY. He’s pouring out wrath in Revelation in order to BRING PEOPLE TO HIM. [Depending on interpretation,] this is the part of the world’s story where people left on earth (after the church is raptured out) who have not accepted Christ as their savior are being giving their last chances to recognize who the God of the universe is and to repent and turn to Him. But. They. Won’t. It’s unbelievable to me. They still choose to deny Him. They still choose their own pride and self.

It seems here in America, for sure, we’re so prideful and bratty and spoiled, that we no longer honor God who sits on a throne. HE sits on the throne. We worship HIM. We are not on a throne. We are not equal to God. This place (this planet, this universe, the heavenly realms, all of it) is HIS. We are HIS. Not the other way around. If Jesus is Lord of your life, He’s in the driver’s seat of your life. He’s not in the trunk. He’s not in the backseat. He’s not in the passenger seat. He’s either in the driver’s seat, or He’s not in the car at all. But it feels like oftentimes, we want to drive our car around with a mannequin up front behind the wheel while we are actually operating the car from the passenger seat “mailman style.” We want everyone around us (when it’s convenient, of course) to assume that’s Jesus leading us and driving our lives, meanwhile we won’t let go of the dang steering wheel!

Scripture commands us to DENY ourselves. We’re to take up our cross and follow HIM. He doesn’t follow us and our lead; we’re to follow HIM. When we assume we have the authority to assign gender pronouns; when we assume we have the authority to decide which lives are worth keeping alive and which aren’t; when we assume we have the authority to define marriage as anything we want, we are acting as gods and that is idolatry. The entire point of the Christian walk is that WE would decrease so HE would increase. That is dying to self. It’s denying what YOU want and only living for what HE wants. “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will find it.” Matthew 16:24-25 This idea absolutely goes against every thing that America and the current culture is feeding us. But it’s the only thing true. It’s the only thing that will last.

Pride is an incredible thing. I wonder if we understand that we are sinners. We are not good. There is no one good but the FATHER (God). Jesus even said, “Why do you call me good? No one is good except God alone.” Mark 10:18. It seems in this current day and age, everyone wants to assume they’re good, though. That they’re not *that* bad – I mean look at So And So, now they’re bad! But that’s not true – even Jesus declares that He’s not good, only God is good. Being “good” gets you nowhere fast.

Good won’t get you to heaven. And neither will religion. Only CHRIST alone, through FAITH alone gets you to heaven. And you don’t just get heaven – YOU GET CHRIST! Coming to faith in Jesus will not give you health and wealth; that is a LIE. Jesus tells a person interested in following Him in Matthew 8:20, “Foxes have dens and birds have nests, but the Son of Man has no place to lay his head.” Any earthly possessions we have are His anyway and to be used for His glory, not our own.

Some people will hate what I’m saying. Maybe they’ll hate me too for saying it. But that’s ok; Jesus gave me a heads up for when that happens. “If the world hates you, keep in mind that it hated me [Jesus} first. If you belonged to the world, it would love you as its own. As it is, you do not belong to the world, but I have chosen you out of the world. That is why the world hates you.” John 15:18-19 The only reason I say any of this is out of love for my fellow man and to follow Jesus’ last command to His followers before He left this earth. “Therefore go and make disciples of all nations… teaching them to obey everything I have commanded you.” Matthew 28:19 I usually try to beat around the bush and be as P. C. as possible when presenting the gospel, but if 2020 has taught us anything, it’s that life is short and you truly never know what’s around the corner.

I know that sometimes “Christianese” (this using Christian language that someone outside the church may not recognize) can be a bit of an issue sometimes. What even is the “gospel” and what do you mean when you say that, Johnna? Gospel means GOOD NEWS. Here’s the good news, guys! Jesus! He’s the good news! Here’s the low down:

—-Humans are sinners. We all sin. We live in a fallen world full of sin and heartache and brokenness, and because of that we are separated from God. “For all have sinned and fall short of the glory of God.” Romans 3:23 This is where the pride thing can become a hang up. We don’t want to admit that we’re a sinner… we’re “good people” remember? We’ve never murdered anyone or cheated on our spouse. We’re “good, duh!” But that’s not true – Scripture tells us we’ve all sinned. Can you admit that and accept that as truth about yourself?

—-Jesus is the Son of God sent to this earth to die on a cross to make recompense for mankind’s sin. Jesus Christ was the ultimate sacrificial lamb (fulfilling Old Testament Law, by the way) whose blood was shed to cover the sin of all mankind who would accept Him. “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God – not by works, so that no one can boast.” Ephesians 2:8-9 Not by WORKS. Just Jesus. This is why I say religion won’t save you. Church won’t save you. Your pastor won’t save you. Jesus saves you. Christ alone.

—-So then what? If you can admit you’re a sinner and that you need a savior, and you believe that savior is Jesus alone and you are willing to accept His free gift, then you commit your life to Christ and ask Him to become Lord of your life. This would be the first step of a lifetime of growing and learning and being sanctified and walking with Jesus. But the first step is always the most important one. Romans 10:9 says, “If you declare with your mouth, ‘Jesus is Lord,’ and believe in your heart that God raised him from the dead, you will be saved.” So this might look like a prayer that asks God for help and welcomes Jesus to become Lord of your life.

Depending on how familiar you are with scripture this may [theologically] be clear as mud – but it’s a lifelong process of studying Scripture and falling more and more in love with Jesus who loves you SO much. So, so much. When everything else fades away – your savings account, your friends, your health – Jesus will still be there and He will still be for you and with you.

If there is a question you have that I could answer or if I could pray for you or encourage you in any way, please reach out! That’s not just something I’m saying so I have a cute conclusion here, it’s a genuine offer. I am available to you whether you know me or not, and there’s nothing more important to me than helping you work toward eternity with Jesus and having a life here on earth worth living because of the hope that awaits us in heaven.

On Guard!

A person I love and respect made a post recently about “cancel culture” referring to the most recent movement of many people to cancel Netflix due to the release of the French film, “Cuties.” In her video, she states she watched the film and although she hated it the entire time, she needed to watch it and encouraged others to watch it rather than “cancel culture” quit Netflix. I have to respectfully disagree. Remember the old song lyrics, “Oh be careful little eyes what you see?” I put this into that category.

Listen carefully – it is ok to guard your heart! (and eyes. and ears.) You can still have meaningful conversations with your children about the dangers of apps like TikTok and about the oversexulization of girls/children in the world WITHOUT watching “Cuties” first in the name of “research.” I have not watch an R rated move in I couldn’t tell you how many years. I felt my own convictions over movies long ago, and my husband and I decided years ago we just wouldn’t watch movies rated R. (There are exceptions to this on occasion for movies that are true stories but are rated R for graphic violence/blood shed like in The Passion of the Christ, etc.)

I’m sure that’s laughable to many of you. Maybe I’m the local town prude. Do I care? Not one bit. It is fine by me. I control what I view and listen to and I know myself enough to know what I can and cannot handle. Images and ideas – they stay in my mind for YEARS and so the things I choose to put into my mind, have to meet some pretty high standards before I just open the door. In fact, there have been times in my life when someone is sharing an inappropriate story or joke and I have flat out asked them to stop. If that feels uncomfortable to you to ask someone to change the subject, maybe you just excuse yourself from the situation instead. But do something! Don’t just sit idly by and allow input into your mind when you have control over what you see and hear.

I have never heard the song, “WAP” nor read the lyrics and I never will. I don’t need to traumatize my mind to remain “relevant.” Based on the chatter online and a few images I’ve seen of that particular “artist,” I can very much declare that that “art” is not something I will be introducing to my mind. And that is ok!

**Caveat here: I absolutely still address real, painful issues – I don’t simply hide under a rock when it comes to issues like human trafficking, abuse to children in the foster care system, poverty, abortion, etc. I pray for God to break my heart for what breaks His and those things break His heart. I research and learn about topics that even though are painful to learn about, are still necessary to share and teach my children about. We have many discussions about the Holocaust and slavery and all kinds of topics that are hard to process because of how sad and horrific it is. I simply am trying to convey here that I don’t willingly view certain images in the spirit of “gathering data.” You can understand something is inappropriate (i.e. WAP) without having to actually watch it with your eyes.

I tell my kids all the time: “It is ok to live a life other do not understand.” In fact, that’s literally the whole point of the Christian life anyway. The last place a Christian needs to be is fitting in. Maybe you won’t be as relevant at the water cooler? Great! If you’re following Jesus, you were called to look DIFFERENT. This world is NOT your home. Fitting in, relevance, trending – these things can not be your idol while you simultaneously call Jesus your Lord. He wants all of your heart. And soul. And mind. So, you have permission to guard those things!

Guard your mind. You can cancel Netflix if you want. In fact, throw your TV on the curb. If you’re not doing something to look different than the world, what are you even doing? Use this as an exercise to see what you’re willing to sacrifice for Christ – mainstream radio? Netflix? Social media? What is your idol? If you can’t let Him lead you in the small things, how will He ever be able to use you in the big things?

I’ll end with this. If we sit in America in our air conditioned homes and wonder what lot we’ve been given that if we cancel our favorite streaming subscription we may persecuted for being part of the cancel culture, then we are SADLY so far from the truth of the gospel that it’s frightening. Literally, this second, Christians are in chains for Christ. They’re being slaughtered for Him. And we aren’t sure if we can make such “sacrifices” as cutting back our TV time? God help us all.

“Above all else, guard your heart, for everything you do flows from it.” Provers 4:23

Visit Voice of the Martyrs to learn about how you can help Christians under persecution: https://www.persecution.com/response/

Throw the Dang Seed!

I have to be honest. I’ve thought about this blog post for nearly two years. I started this draft on July 17, 2017. I wrote the title and then clicked “save” and couldn’t come back to finish the job. I’m not completely sure why I was hesitant. But the idea that I have thought about this post for 20 months, should speak to the fact that this topic is still relevant and deep in my heart.

You know the movie, “The Blind Side?” You know, when Sandra Bullock plays a feisty southern mama who is fired up when her high school son’s football coach isn’t running the ball the way he should during a game? Sandra Bullock calls the coach on his cell phone down on the field and directs him to, “RUN THE DANG BALL!” She was fed up with his trick plays and his conservative ways of coaching and she was ready to scream at him to take action and change the method of which he’d been trying to win the game.

There’s a story I’ve heard before about a farmer scattering some seeds. Usually when I hear this story spoken about, the person presenting the material goes through the different types of soil these seeds land on and the implications of the types of soil. There’s the hard soil – they hear the message but then lose it quickly, the rocky soil – they hear the message but have no roots and once a problem arises they just wilt away, the thorny soil – they hear the message and then worldly junk and desires interfere and no crop is actually produced, and finally the good soil – they hear the message and accept it and actually produce a huge harvest.

In July 2017, when once again I had heard this story from Mark 4 talked about, it was like a siren was going off in my head; but not about which kind of soil I should be. Obviously, we should all be aiming to be the good soil. We need to hear the message, accept it and then PRODUCE a huge harvest. And that got me thinking….

At some point, we have to stop being the consumer (the soil) and start being the producer (the FARMER). We live in a day and time and in a country where we want to be told which kind of soil we should be. To be reminded that we need to have perseverance and we need to not wither away when problems come and we need to not be focused on worldly “stuff” and aspirations. But, y’all, at some point, it’s time for us to THROW THE DANG SEED! We need to step up and be the farmer. We cannot make disciples if we keep playing the character of the soil in the story. We have to move out of the role of “consuming Christianity” and be the one who is throwing some seed onto the soil.

“The farmer I talked about is the one who brings God’s message to others.” – Jesus, Mark 4:14

Is that not what we’re all called to do as believers? Bring God’s message to others? To go and make disciples? Yet it seems that often we show up to church or we play a podcast or we read a self help book to learn more about OURSELVES and not OTHERS. We are trying to make sure we’re “good soil,” yet the thing that makes the soil good is that it’s producing a harvest.

I’m no professional, nor an expert on evangelizing the Gospel, but man alive, I believe you and me, we can be some extraordinary farmers! I think it takes us being sick and tired of just being the soil in the story. Let’s step into our role as the farmer. Stop “consuming” Christianity. Stop being served and start serving. Let’s believe that we can meet people where they are, get to know them and their struggles and then share all that Jesus has done for them and how much He loves them. Let’s bring the message of God to others.

And if you needed to hear it, the message is that God loves you (in fact, literally could not love you any more than He already does) and that when you were separated from Him because of your sin, He made a way through His son, Jesus (He literally could not give you any greater of a gift than He already has). And the solution to your separation from Him could not be any simpler than it is – it’s simply believing in Him and trusting in Jesus alone as your only way to heaven. I realize that’s a quick, two sentence explanation of Jesus, but I’m so excited to THROW THE DANG SEED that all I need is two sentences and a couple of parenthesis to get it out of my hand and onto some soil.

I love you so much, I want to throw seeds at you and smack you in the face with them. 😉 What a compliment! As always, I am available and willing to answer other questions or go deeper than this platform allows, so please reach out if you want to know more about Christ and how He sustains me daily in circumstances that could destroy me.

johnna@johnnahensley.com

‘Tis the Season

It May. Mayhem, if you ask me. So many school events, class parties, teacher appreciation events, baseball games, graduations. You name it; it’s happening. And all within a five day span it feels like. Next week, my youngest son graduates from Pre-K. Tonight, my middle son completed his second year of Royal Ambassadors (a Wednesday night missions program at our church). In a couple of weeks, Hayden’s former 5th grade public school classmates will be celebrating their final walk through their elementary school halls. Obviously, as a homeschooler now, Hayden won’t be participating in those activities with his 5th grade class. He didn’t participate tonight in the RA banquet at church. He doesn’t fit any certain mold. When Hayden entered the world, in fact, the mold was crushed and obliterated. He is his own person. And we are grateful. But also, we are sad.

It’s hard to sit and watch Hayden’s peers move on in life. We always knew, theoretically, that this would become our reality. And ever so slowly, it has unfolded. This season of the year is just a time when it is on the forefront, rapidly playing out before us. Even if Hayden had remained in public school, he would not find joy in the celebration taking place for his peers. If Hayden had continued in RAs at church this year, he couldn’t have endured the banquet and all of the clapping – in fact, he stayed in the lobby with his attendant and cried because he could hear the applause through the wall and it was upsetting to him.

Oftentimes, I feel like I’m a mom with two families. I have a family of a husband and two healthy [albeit, wild] boys. We go to baseball games and cheer on our boys, we drop off our boys to their Sunday school class and leave them, free as a bird, we even sometimes go on vacations just the four of us and have a carefree, restful time. I also have a family of a husband and a special needs son. We go to doctor appointments and Operating Rooms and we cheer on our boy, we drop our boy off to his attendant at Sunday school and then keep our phones close by just in case the oxygen tank needs to be exchanged or his trach comes out, we sometimes go on trips to hotels with our boy so that he can work behind the front desk and make hotel key cards to add to his obsessive collection. Yet everyday, simultaneously, I am both moms.

The sting of watching my life as a mom not look the way I had always pictured it, doesn’t ever go away. Some days are easier than others and the grief is so faint and so small in my heart that I nearly forget it’s there. And other days, it’s so big and painful I’m not sure how I will get through it. And that is ok. Grief is a part of this journey. I’m in good company with my grief. In fact, Jesus Himself was a “man of sorrows and acquainted with grief.”  (Isaiah 53:3)

I’ve been working with my counselor over the last couple of years and I know myself better, I know how to handle stress and grief better. But mostly, I know my God better. This past decade of living life as “Hayden’s mom” has opened my eyes to so many incredible, priceless lessons. I’ve seen God’s hand work in unbelievable ways. I’ve been gifted this opportunity to walk alongside and just watch His amazing plan play out. However, most recently, over the last two years, my heart has been attuned to not just God’s plans, but God Himself. To really understand the love He has for me, to believe just how loved I am, and to accept how He sees me has been the highlight of my life’s journey. I heard a quote from Bob Goff once that said, “Jesus is nuts about you! Your picture is in His wallet.” What a great illustration! The creator of the entire universe is really, really crazy about you.

See, when Jesus came to this earth to walk as a man, He experienced the same things we do. Grief, betrayal, sadness, exhaustion, hunger, thirst. And He overcame it all through His death and resurrection. And now, I have complete hope in Jesus. I know exactly what my future will look like. I know what restoration will come. And I know what true love feels like. And when you’re loved like crazy by your Creator, you are free indeed; free from the bondage of grief.

“So if the Son sets you free, you will be free indeed.” John 8:36

Shoe Fall, Don’t Bother Me

The weight of always waiting for the other shoe to fall is exhausting. Waiting for the “what if” to happen and always being on edge knowing it IS coming…. an ER trip, an ambulance ride, a hospitalization that could possibly be the final curtain call on your child’s life. These are things “normal people” don’t have to contend with. For my family, we are always in fight or flight mode, whether we want to be or not. I literally carry an ambubag around with me waiting for the moment I have to use it in an attempt to save my son’s life [again]. For families like mine, this is just a typical, run of the mill day of the week. Nothing to see here…

I mourn the loss of enjoying my kids’ childhood. I miss it dearly. I see parents around me who are actually just enjoying their children. They’re taking them to ball games or amusement parks, staying up late watching movies, going to a skate park or a concert. Just enjoying life alongside their children.

My child is work. I’m working nursing shifts. My son’s existence requires 24/7 care. An actual nurse works here in my house and makes a full living and receives insurance benefits because my son exists. I don’t say that to complain; I say that to emphasize that keeping this particular human being alive is work. It’s a J-O-B. Well, more of a volunteer gig for me, but still.

The unfortunate thing of it all is, my other two kids feel the consequence. I can’t fully enjoy their childhoods either. I’m so preoccupied with wondering if I’ve given all of Hayden’s meds, if it’s time to cath him or time for a feed, time for his breathing treatments, time to administer the bowel program, remembering which phone calls I need to make for the day for refills, appointments, dealings with insurance companies.

Everyone has their own problems. I completely understand that. And though mine are so much more intense, I do recognize that no one’s life is perfect and no family is perfect and pleasant and fun all the time. But I would venture to say, for the typical family, the opportunity to have fun easily is more feasible. Our family does have fun, but it is work to master it all. Yet we do it. Because we want to enjoy life, no matter what it looks like. Life is a gift and we try and treasure each day we’ve been gifted and use it to the most of our ability.

“Many are they who say of me, ‘There is no help for him in God.’ But You, O Lord, are a shield for me, my glory and the One who lifts up my head. I cried to the Lord with my voice, and He heard me from His holy hill.” Psalm 3:2-4

Would You Like the Leather Package?

When buying a brand new car, you are offered so many customized choices and selections. Leather package, sun roof package, navigation package. You name it, you can have it. Just how you would like it to be. It’s the [first] world we live in now. You want something, just order it up.

Four months in to my son’s seven month NICU stay, we had been living at the Ronald McDonald House in Houston, Texas and had decided it was time to relocate, officially, to Houston to be near the top notch Texas Children’s Hospital. We listed for sale our home in College Station, with a beautiful and perfectly prepared nursery, mind you, and rented a one bedroom apartment in Houston, of which we used ice chests for a table, lawn chairs for seating, and a lovely air mattress to complete our master suite. At night, we would fall asleep to the hum of a deep freezer in our bedroom that was full to the brim with breast milk, or “liquid gold” that was being stored for Hayden. During Hayden’s seven months in NICU, we had spent four months in Ronald McDonald House and three months in the apartment; a total of seven months of life in disarray. We soon came to realize, when life throws you curve balls, you begin to reevaluate your priorities. The make shift arrangements in our apartment were a welcomed change from the community living set up we had experienced for so many months at Ronald McDonald House. Because of our circumstances, we were able to appreciate all the more, our own space and our own air mattress and our own kitchen “ice chest table.” Our priorities had shifted. The experience of Hayden’s birth and subsequent NICU stay was the beginning of our refinement as a couple, as a family, and followers of Jesus. We were in a position to really allow our hearts to be molded to what Christ has called us to. To leave everything behind and to seek after Him. “When Jesus heard that, he said, ‘Then there’s only one thing left to do: Sell everything you own and give it away to the poor. You will have riches in heaven. Then come, follow me.’” Luke 18:22

In early 2008, just a few weeks before Hayden’s long awaited discharge from his lengthy NICU stay, we realized we would need to get a larger vehicle able to accommodate Hayden’s custom specialty stroller, oxygen tanks, ventilator, feeding pump, pulse ox monitor and other life sustaining equipment. We had just sold our home in College Station and we took the money we had made on it and gave it to a friend to take the money to a car auction. We gave a couple of recommendations on the space we needed and what our preference would be for a make and model of vehicle, but ultimately we said we would just take what we could get with the cash we had and be happy. And so, that is how we obtained our SUV that became our main vehicle to drive Hayden and his equipment to and from doctor visits. I remember the day we were sitting in our apartment and the car arrived. My father in law had flown to Austin to pick up the car from the gentleman who had purchased it on our behalf at the auction and drive it back to Houston. We walked out to the parking lot to see what we had just purchased. What kind of people just buy a car and don’t even care what it looks like? That would be us. I didn’t pick the package that I wanted. I didn’t pick the color I wanted. I didn’t pick the fanciest upgrades. Heck, I didn’t even see it until it was already ours. And you know what – it didn’t matter. It was just a car. It was a tool. It served a purpose; but it did not define me. If our identity is in Christ, the things we own, the clothes we wear, the jobs we have, the vacations we take – none of this defines us.

I’ve come to realize you have to be so deeply in love with Jesus that if all of these things in your life disappear and if all the people in your life fall away, that He will be your rock and your steady fortress. Like the old hymn says, “Though none go with me, I still will follow.” This life is not solely about your pleasure. In fact, it’s the opposite. If you’re following after Jesus, then HE will be your joy. But.you.will.have.troubles! “In this world you will have trouble. But take heart! I have overcome the world.” John 16:33 It is not a surprise. It’s not a trick move. Jesus is very upfront about it. But oh my gosh, people, He is so worth the “hassle.” *sarcasm added* I promise you!! The Bible never once says “follow your heart.” Nothing about a Christian life is about your ultimate happiness and just doing what feels good and pursuing your own selfish desires. The Bible is about following Jesus and doing His will, no matter the circumstances.

As I write this, my son is 20 days post op from a major surgery and has currently been readmitted to the PICU due to complications. He went through an eight hour surgery only 20 days ago. After his initial discharge from the hospital, when all the noise stopped, the visitors slowed down and I found myself living in another Ronald McDonald House, this time in Ohio, taking care of Hayden on my own, I began to feel isolated. It was easy to lose sight of where my foundation was. Those first few days after discharge when life was crazy busy doing my nursing duties for Hayden and being so focused on flushing his tubes, giving his feeds, doing his treatments, and everything else on the list 24/7, I was leaving a door wide open for the enemy to mess with me. To draw my focus to my circumstances, my temporary situation rather than my eyes staying fixed on God and finding my rest in Jesus. It is a constant, day to day journey to be on with the Lord. It’s not a “say a prayer, obtain salvation and then do what you want.” Salvation isn’t a safety net. It’s an action – to WALK with the Lord.

Are you walking with Him? Do you hear the Spirit inside you guiding you and directing you? Are you seeking Him? Or are you distracted? Do you think your happiness is all that matters? There’s a quote I heard once about marriage, but I think could apply to most areas of life. “Marriage isn’t about making you happy, it’s about making you holy.” I completely agree with that statement from a marital standpoint, but also feel we could apply it to so many areas. For example in my own life, “Parenthood isn’t about making you happy, it’s about making you holy.” As cute and adorable as Hayden is, our situation is hard and I’m not always happy about all the intense work I have to do. But if I change my perspective and consider that my circumstance is one that is making me holy, then I welcome it. Even though it is hard. Would you trust Him enough to know that He loves you and He wants to make you HOLY and more like Him. He loves you so much. God created you, and then He sent His own son to rectify our faults so that through Him we could be reconciled, and then He even gave us the Holy Spirit to literally exist inside of us and be our own personal counselor. If you know Him, draw closer to Him every moment of every day. If you don’t know Him, please come to trust Him. I promise you, He is worth it.

No Refunds or Exchanges

You know how some stores have strict and sometimes even nonexistent refund policies? “All Sales Final” posted in the window means, if you plan to shop, you better love what you get and be prepared to stick with it, because there are no take backs.

That’s parenthood, isn’t it? You have a kid and all of a sudden you’re in a situation where, “You get what you get, and you don’t throw a fit.” My special needs son is now ten. And he is my first born. So up until Hayden entered my life a decade ago, I didn’t know anything about even being a parent, let alone a parent to a special needs child.

Now this post isn’t a pity party. (I do have pity parties on rare occasions and the guest list is quite small, reserved seating only for those closest to the madness. In fact, my first pity party was held in the Postpartum unit at St. Luke’s Hospital in Houston in 2007. My mother in law and I were the only attendees and we held the pity party in the hallway while walking the unit, post surgery, trying to prevent blood clots and building up my strength. We took a moment right near the “healthy babies” in the nursery window to bawl our eyes out, right along with the babies, as we thought of how much we wished Hayden was with us instead of in an ICU in the hospital next door.)

I write a lot about how I had no comparison to what “normal” should be when Hayden was born. I count that a blessing. I didn’t know any differently and I just did what needed to be done. However, due to my own blissful ignorance, I have had moments of enlightenment mixed with grief. I remember back when Hayden was about two and half or three, I was by myself visiting a friend who had a child just a few months older than Hayden. This friend and I were seated on her couch and she asked her three year old, “Bring Mommy the phone.” And he did it. Like, he heard her. He processed the request. He used his legs and went over and retrieved the item she needed. And he brought it to her. Just like that! In that moment, I just froze and stared in amazed bewilderment. Is this what kids can do?? Is this what Hayden would do if he could? She didn’t even have to lay out the steps one by one. She didn’t have to give him two choices of which item she needed. She didn’t have to put him on a scooter board, prone, and make sure he was secured so he could pull himself to the item. This was the most amazing thing I had ever seen a kid do!

There was another time, I was out of town for a conference and I stayed the night with some friends of ours who had two kids, probably around the ages of 5 and 1. They had cooked a lovely dinner and the five of us sat down to eat. We each sat in our spot, the kids fed themselves and no one’s oxygen monitor indicated a desaturation, no one needed suctioning; we just sat there and ate. And afterward the kids took a bath and went to sleep. Then there was free time. I do not exaggerate when I say I literally, felt like I was in a resort. No one needed an hour’s worth of treatments before bed, no one needed to have their meds drawn up, there was no troubleshooting of ventilators and concentrators, and after the kids were asleep no one had to prepare tomorrow’s blenderized foods and draw up food bags. It was incredible. And I do not say that to discount parenting typical children who are 5 and 1! That is hard work, too! I have other kids who are typical and I know there are challenges with every child. It’s just that my observations of this family revealed what “normal” would look like.

Even now, as my son is ten and his peers are staying home alone for small amounts of time, my mind is just BLOWN. How is this happening?! Every day that passes, more shots of grief strike at random times when I least expect them. A scroll through my Facebook feed recently revealed nearly the whole 5th grade class went to a sleep away camp together for three days. As all the proud mommas posted pictures of their child’s send off to camp, inside I ached as a knife twisted my heart. I know my son won’t be able to do everything like everyone else his age. (Heck, at this point he homeschools anyway so this particular trip wasn’t even an option for him as he’s not enrolled in that school anymore – but it’s just the principle of the whole matter.) And then my inner voice starts to get frustrated that other moms get to post their pictures while I sit and ponder, “Do they even know how I feel? How hard this is for me? How lucky they are?” It’s like this selfish indignation that occasionally rears its ugly head.

You know, as many “cons” that I could list and dwell on, if I allowed myself to do so, there are more “pros” than I could probably ever count. Yes, I have had to deal with changing diapers and cleaning up poop for a solid decade and counting. I’ve watched my son miss out on events and experiences. I’ve had to neglect my other two typical sons and watch them struggle as they yearn for my attention. I mourn often of what our “normal” family would have looked like and how different things would have been. However, the people we have met on this journey – other special needs moms, Special Ed teachers, precious doctors and nurses, celebrities like Pat Sajak and Vanna White and John Cena, – the experiences we have had as a family like participating in a Make a Wish trip, watching Hayden develop and grow in his own skin and becoming a self proclaimed “VIP”, and developing friendships with people we never would have met like Aaron Watson, Cal Johnson, Kathleen Barkley, our town’s mayor and so many more, are all things I would never want to have missed out on. Mostly, the biggest “pro” to top the list is that we have a true perspective of LIFE. We have a fresh opportunity every single day to live out sacrificial love. I will never look at situations, circumstances, or “stuff” the same way. And that is because I was given Hayden, to be mine.

There’s a Southern Gospel song that I absolutely love whose lyrics speak truth to me. “I Wouldn’t Take Nothin’ for My Journey Now” says,

“I’ve had a lot of heartache and I met a lot of grief and woe
But when I would stumble then I would humble down
And there I’d say, I wouldn’t take nothin’ for my journey now”

This journey isn’t something I would have picked for myself, but it is undoubtedly one I would never trade. The lessons and experiences from this life are priceless, but ultimately, the reason I would never trade it, is because I have grown closer to Jesus BECAUSE of my circumstances. And for that I am so, so grateful to be in this place that is difficult, exhausting, and unfair. It’s in this place that I am humbled to look UP to Him and praise His name for His sovereign plan and for the gift of salvation that He offers to us all. Because of what He has done for us, by dying on the cross, we can all have hope of eternity with Him.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won’t last very long. Yet they produce for us an immeasurably great glory that will last FOREVER! So we don’t look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever.” 2 Corinthians 4:16-18

It’s impossible for me to read those words and not tear up. God is so gracious to have given us Jesus to make a way for us to have hope. And so during my circumstances, that I wasn’t wise enough to even know I needed, I look to Him and am eager for an eternity with Him. I trust Him completely and I know that none of this world is about me – it is about HIM and spreading God’s glory throughout all of the world. I am incredibly honored and blessed that we get to do just that in the even tiniest way, by using our situation to continue to give glory to God.

If you don’t have that relationship with Jesus, or if you have questions about how to develop such a relationship and feel secure in your eternity, as always, please reach out to me or a local church. My contact information can be found under the “About” tab on this blog.

I’ll sum up with this line from a friend of Hayden’s, Aaron Watson. “No it won’t all go the way that it should, but I know the heart of life is good.”

What Are You Even Saying?

In this world and in this life I live, I find my hope in Christ alone. People who are close to me have heard me talk about being #RaptureReady. In my circle of Christian friends I’ve heard people use the phrase “Come quickly, Jesus,” after insane world events or other disasters. I long for the day Jesus will come quickly and put an end to all of this madness and evil and sin. However, I started to wonder if there are people out there who don’t know why Christians make statements like this.

I can’t speak on behalf of all Christians everywhere or about all the different theologies and beliefs out there; I can only speak to my own walk with the Lord. I know this world is not my home. My home is in heaven because I am a follower of Christ and have a personal relationship with Him, one He initiated with me and that I accepted from Him through faith. And through that same faith, I trust completely that this world is not all there is for me. One day, this lifetime here will be a far off distant, foggy dream. “Yet what we suffer now is nothing compared to the glory he will give us later.” Romans 8:18

The Bible tells us that this earth will end one day; this earth will be destroyed and a new heaven and a new earth will be created – (“Then the heavens will pass away with a terrible noise, and everything in them will disappear in fire, and the earth and everything on it will be exposed to judgment.” 2 Peter 3:10, “Heaven and earth will disappear, but my words will remain forever.” Luke 21:33, “Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared. And the sea was also gone.” Revelation 21:1, and many other verses…)

To get down to the basics of it, one day the earth will end. But before this earth ends, we will have signs to look for to know that time is winding down. And as we see the time winding down, from the signs described to us in the Bible, the church looks for Christ’s return to take His believers home. “You should look forward to that day and hurry it along – the day when God will set the heavens on fire and the elements will melt away in the flames. But in keeping with his promise we are looking forward to a new heaven and a new earth, where righteousness dwells.”  2 Peter 3:12-13

The reason we can look forward to that, is because as believers we know we will spend eternity in heaven with the Lord. And for that reason alone, I am able to get up every morning and do the work that has been assigned to me during my time here. “Since everything around us is going to melt away, what holy, godly lives you should be living!” 2 Peter 3:11

It is not easy and there is suffering. Jesus said that and was very upfront about it – that following Him meant there would be suffering and pain, but that we should rejoice in the suffering because it is for the Kingdom’s cause. We should embrace suffering. That’s not a very popular concept in this day and age. We want comfort and ease and success and “stuff”. But it’s all going to burn one day. The only thing you can take with you is the work you did for the Lord. “And even we Christians although we have the Holy Spirit within us as a  foretaste of future glory, also groan to be released from pain and suffering. We, too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us.” Romans 8:23

See, there’s not going to just be a new heaven and a new earth. There will a new body. Which is why I know without a shadow of a doubt that my son will one day never need his wheel chair again. It’s a temporary accessory that will one day burn up with this earth. But my son’s spirit and soul and brand new body will live for eternity with Christ because of the tremendous gift Christ offered to us. To all of us. For free – you just have to accept it. This earth has an expiration date, and if you can’t tell that time here is getting shorter and shorter, I’m not sure what else will wake you up. I know we’re supposed to be politically correct and let everyone do their own thing, but I love you too much to not tell you about Christ and how much He flipping loves you and wants you to be with Him in eternity! “The Lord isn’t really being slow about his promise to return, as some people think. No, he is being patient for your sake. He does not want anyone to perish, so he is giving more time for everyone to repent.” 2 Peter 3:9

If you’re not a believer, hop onto BibleGateway.com and read some of the Word or send me an email with your address and I will send you a Bible. If you want to repent of your sins and walk with the Lord (please note, I did not say be perfect – but walk with Him and have Him guide you), then pray to Him and just call out to Him. If you want a person to talk to or ask questions to, I now make myself available to you. This post is different from my usual post, but it’s just down to the heart of it. I could beat around the bush, but at the end of the day, and of the world, I just want you to know that God loves you, sent His son Jesus to take the punishment for your sins and He can redeem you if you just ask Him.