They’re Just Forks

~ JohnnaCHensley ~ 7 Comments

Imagine you and a handful of friends are co-hosting a party; maybe a baby shower or a bachelor party. You and the other hosts are at the venue prior to the event starting and you’re setting up. You’ve got the food out on the tables and the cake table is just perfectly so, things are shaping up nicely. You just need to put out the forks and you should be good to go for the event to begin! Except, as you start to place the forks on the table, one of the other hosts has a different idea about how to display them. You want them stacked in a nice, orderly fashion – piles of five forks each, fanned out just right. The other host wants them tossed into a Mason jar with some cute ribbon tied around the jar. Another host thinks the forks should be wrapped inside napkins with raffia tied around them.

For whatever reason, this fork talk has gotten you all hot and bothered. You just can’t imagine why these other hosts won’t agree with your way to display the forks. And an argument ensues. Here you are, three grown adults, going to town with a “heated fellowship” over how to put some forks out on a table. Meanwhile, your voices are getting louder and louder. And the guests for the party are beginning to arrive…. they are literally outside the front door about to ring the doorbell when one of the guests says to the other in disbelief, “Do you hear that? Are people arguing and bickering?? I’m not sure I want to go inside if this is what there is to look forward to in there.”

Yet, you keep arguing. Except now, it’s not even about the forks. In the heat of the moment, you’ve moved on to how the decorations aren’t what you would have picked. Or there was a better cake flavor choice than the one being served. Things continue to escalate.  And more and more guests are standing outside not slightly interested in coming into this circus.

And before you know it, the guest of honor shows up expecting to be welcomed by family and friends. But instead, what the guest of honor finds upon arrival is a whole bunch of people standing outside the venue dreading even going inside. No one has spoken to these guests or invited them in, because there were “bigger things” going on – bigger arguments to settle among the hosts. There wasn’t time to address those on the outside of the door. Heck, you didn’t even look up to notice they were watching you. You were so wrapped up in being right or having your voice heard among the other hosts, that you never did your job. The job assignment was to welcome guests into the venue and to be kind and loving to them, serving them.

Now it’s too late, though. The guest of honor is here. And you weren’t ready. And neither were those on the outside of the door. Oh, you had the place decorated and you had all that you needed to get the thing done. But you couldn’t see past the forks. And instead, you ignored the people outside. You disregarded how the guest of honor would feel about your behavior. You got caught off guard but you knew all along this event was going to happen.

But that’s us isn’t it? Us in the church body – us Christians. We’ve been given a job assignment, but we’re so wrapped up in arguing among each other that we are embarrassing ourselves and no one wants to come in to the church body of believers. They’re watching from the outside seeing our ridiculous behavior and we literally have no clue. Because we just want to win an argument with other evangelicals. Meanwhile, there are people on the outside who need Jesus and do not know Him and it’s our JOB to “go and make disciples of all the nations” for Him (Matthew 28:19). HE is the Guest of Honor and He IS going to show up. The end of this age is coming. No one knows precisely when that will be, but Jesus said He will be coming back. The invitation has been sent out. The event will take place. Are you going to be caught off guard – in the middle of an argument with a fellow Christian over the most recent topic the world’s media suggested you argue about? Or are you going to be caught in the act of being kind and welcoming, showing God’s love to those on the other side of the door?

And when He does show up, are you going to recognize Him? Do you know Him, know Him? Are you spending time with Him daily? Talking to Him? Reading His Letters to you? Loving Him more than anything or anyone else? Waiting anxiously for the day He will see you face to face and call you by name? Because inside the venue or just outside the door, the time will come when you will have a conversation with the Guest of Honor. And how that scene plays out, is for you to decide. Will it be one of loving embrace and immeasurable happiness? Or one of sorrow and regret?

“See, I am coming soon, and my reward is with me, to repay all according to their deeds.” Revelation 22:12

 

I encourage you, please reach out to myself or a local church if you have questions about what it means to know Jesus personally. The thing Jesus wants most is you. He created you for a relationship with Him. 

This _____________ Life

~ JohnnaCHensley ~ 4 Comments

I find a little bit of solace in the fact that the life I lead, as hard as it is, is the only life I know. I will never know what it is like to have all healthy children. I will never know what it’s like to bring home your first born, two day old baby and marvel at becoming a family of three. I will never know what it is like to go to sleep at night and not keep one ear open listening for the pulse oximeter or ventilator alerting of a problem with my child. Yet, in a way I wonder, is it better like this? That this is the only way I will remember parenthood. It’s the only way I know.

It’s not an easy road. And it doesn’t mean that it’s not isolating, exhausting and draining. Sometimes I find myself in low valleys where it would be easy to wallow in my suffering, my loss. The loss of having only healthy children. The loss of bringing home a newborn baby rather than a seven month old from a NICU. The loss of going to sleep peacefully each night and being able to rest carefree all night. Those are all very real losses.

If you’ve read my posts before, you know I relate often to music. There is a Texas Country artist, Cody Johnson, who recently released a song called, “The Only One I Know (Cowboy Life).” The song portrays the difficulty a cowboy, working the rodeo circuit, feels as he is alone out on the road, ridden with failure and injury from working the rodeo. I can relate to this song. Not as a rodeo contestant, obviously, but as the mother of a special needs child, living this type of life that is uniquely isolating. In the chorus, Cody shares,

“Just some broken hearts and broken bones, and a hell of a whole lot of bein’ alone…… this cowboy life might kill me, but it’s the only one I know.”

That’s a completely accurate description to this life I lead. I’ve had plenty of broken hearts and my fair share of being alone. In the bridge of the song,

“Yeah it’ll kill me, before it ever lets me go.

It’ll kill me, but it’s the only life I know.

And I’d rather die than be caught crying, so I’m just smiling, wear my hat down low…”

For me, that is relatable. This life may kill me yet, but I don’t know any other life, or any other way. And my pride wants me to grin and bear it, hide the tears and wear my hat down low so no one knows the struggle.

But it turns out, though my heart may break at times, and though I may feel alone, I am not alone. And even when my pride wants me to hide my tears and my sorrow, my Father keeps track of them all and He is with me. “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalms 56:8

I recently realized why it is He’s recording my hurts in a book. It’s because eventually, when all is said and done and I see Him in Glory, on that day, all will be restored. He is keeping the record so He can set it right. I trust in that and I accept that whatever it is that we endure on this earth is for a greater purpose that we cannot fathom this side of heaven. No matter how miserable the sufferings are, there’s a greater good.

So I ask you, what would your song be? “The Only One I know – Single Mom Life”?, “Special Needs Life”?, “Dead End Job Life”? Whatever you are going through and whatever you are enduring that feels like it is just the only way you know, God wants to set it right for those who trust in Him. “He will remove all of their sorrows, and there will be no more death or sorrow or crying or pain. For the old world and its evils are gone forever.” Revelation 21: 4

 

Remarkably Loved

~ JohnnaCHensley ~ 2 Comments

I have a name that is hard to pronounce. And hard to spell. For the majority of my life, I have answered to anything: “Johanna”, “Jonah”, “Joanna”. I have been the person who most people forget, yet, ironically, I remember most people. Quietly, contemplatively, I am always people watching and remembering idle tidbits of information about someone. I am an introvert whose thoughts in my head exhaust me and I rarely share a mild portion of them in conversation with others around me.

In 2007, something changed. I became a mom. Of a special needs son. I was taught by medical staff how to be empowered. How to stand up for my child and be his voice. How to advocate for him and follow my gut instinct. All of a which I eagerly embraced. When it comes to my children, I know what my job is and I know have a valuable voice.

As a parent of a special needs child, though, I spend so much time and energy fighting for my son, that it is very easy to lose my own personal identity. I have to remind myself that I am more than just “Hayden’s Mom.” I am more than a walking computer data base of lab values, vent setting and med checklists. But then, who am I without this identity of being my son’s “Case Manager”?

Last week, I took my three boys on a walk around our neighborhood with the help of Hayden’s nurse. Hayden and his nurse were a few yards behind myself and the two younger boys. As I walked past a neighbor out in their front yard, he and I did the casual neighbor-wave-exchange move and I continued walking on. A few moments behind me, Hayden and his nurse walked by the same neighbor. Only this time, Hayden received the royal treatment, which is a wonderful thing. “How are you Hayden?! Good to see you! You’re looking great!” Then, as an afterthought, my neighbor gave a glance ahead of Hayden to where “Hayden’s Mom” was standing and then the light bulb clicked. My identifying mark is Hayden’s presence beside me. The neighbor and I then exchanged pleasantries and we all went on with our day. This scenario I described, happened twice during this one outing. It has happened countless times in numerous settings. It is a humbling experience. To know that your impression left on someone was not always strong enough to leave a mark. That you are the Robin to someone else who is Batman.

The enemy knows how to mess with me. He knows how to mess with you. You might not believe that, but it is true. The Bible tells us, “For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places.” – Ephesians 6:12. It is spiritual warfare. I began to allow the enemy to convince me that without Hayden I was completely unremarkable. I almost believed I had no value without this person that I invest my heart and soul into. Countless voices in my head telling me – “No one even knows how to say your name, let alone spell it.” “Your neighbors don’t even remember who you are unless Hayden is with you.” “There’s nothing you’re great at on your own. It’s only because of Hayden that you’re worth anything.”

Feeling worthy of love and yearning to be empty of shame has been a life long struggle of mine for a variety of a reasons. Because of this natural bend toward not feeling worthy of receiving love, it has always been hard for me to process the following information:

There is a Person who is straight up, head over heels in love with me. He adores me. He values everything I have to say. He is my biggest cheerleader. He knows how to pronounce my name. When He wrote my name in His book, He did not misspell it. He wants me to live with him for eternity. 

I have to remember daily whose I am. I am not Hayden’s. Hayden exists separate from me. I exist separate from Hayden. I exist separate from my husband and my kids and my laundry piles and my trips to the ball field. I have to first exist in my relationship with the Lord. This needs to be my daily reminder. It is a constant battle between my flesh and my heart. The enemy is so great at convincing us that our children are our number one priority. That we need to do everything for them so they will grow up to be amazing adults and make us proud. Or maybe we are convinced our spouse needs to be our entire focus; their happiness and serving them and honoring them. Or perhaps we are just certain that our career is where our value is found. Those are all wonderful things, children, spouses, careers. But our first priority is a real, interactive relationship with God. It is why we were created.

And that is why we are miserable running from here to there and back again while we check Pinterest at red lights to make sure we are hitting the mark with our children’s birthday party decor and making certain our Fitbit has synced so we can show the world we dominated the Workweek Hustle. Those things are just not where it is at, y’all. It never will be. Maybe those are all lovely things, but that is not what it is going to be about when all is said and done.

I am preaching to myself in this post; I have got to remember that He is jealous for me. He is jealous for all of this time I wake up and only invest in others and leave Him as an afterthought. In the bestseller, “Imagine Heaven,” John Burke, makes a great connection when he says, “As God reveals to the Old Testament prophets, when we forsake our Creator to go our own way against his will, and when we love other things more than God, it breaks his heart (an idol is anything we put first before God). All the warnings of punishment and judgment for sin and rebellion in the Old Testament remind us that our actions have cause-and-effect consequences. When we turn from our Creator, we hurt God, and we hurt each other – always – even if we don’t see it yet.”

So for whoever out there, like me, can easily feel unworthy and unnoticed, there is good news.

There is a Person who is straight up, head over heels in love with you. He adores you. He values everything you have to say. He is your biggest cheerleader. He knows your name. He wants to see your name in His book. He wants you to live with Him for eternity. 

What are you working for today?

~ JohnnaCHensley ~ 3 Comments

Over the last nine and a half years, I have met countless doctors, nurses, therapists, respiratory specialists, insurance representatives, child life specialists, durable medical equipment representatives. You name it, I have dealt with them. Hayden has received Occupational Therapy (OT), Speech Therapy (ST), and Physical Therapy (PT) since he was born. The vast majority of these therapy sessions I have sat in on. Hayden requires suctioning frequently, monitoring for his oxygen saturations, and in case of an emergency trach change, he needs someone present who is capable of changing the tracheostomy tube and keeping his airway secure. Due to these critical needs, Hayden always has to have a nurse with him, or a parent. And so that means, I have seen my fair share of therapy sessions.

Therapy has been crucial for Hayden and our family. I know he has the abilities he has today because of early intervention of therapy services. When he was a tiny baby, the therapists would just hold a shiny, noisy toy in front of him and he would perform the task at hand in order to see the toy. Then, as he got a little bit older, he would do the therapy work and then get to play with a toy he chose from the loot the therapist had. As he got even older and was verbal, many therapy sessions would start out with this statement being made by the therapist to Hayden: “What are you working for today?” Hayden would then declare what game he wanted to play when the real work was done, or what toy he would enjoy after he had earned it, by doing his work and doing his best for the therapist.

See, Hayden trusted the therapist. He believed her when she said, do your work here in this session, and at the end you will receive a reward for your work. And so he worked his tail off because he knew the good that was coming. Some days it was ugly. Some days he was distracted. Some days he did not feel like it. But he did the work he was told to do. And every time, the therapist delivered on the promise.

I cannot tell you have many times people have said to me, “I don’t know how you do it!” Well, me neither. The only thing I can imagine is my trust  in the hope of the future because of Christ. Honestly. I know that the reward at the end of this journey will make the work of this life worth it. And not because I deserve it at all. That is the paradox here. I do not deserve a reward. I don’t. I’m a sinner. I have made terrible choices. I have disappointed people I love. I have hurt people I care deeply for. But because of the salvation Christ offered to me and that I accepted, I know that my eternity will be in heaven.

And I know that reward is what I am working for today. Some days it is ugly. Some days I am distracted. Some days I do not feel like it. But with my hope in Him, I am doing the work and trusting completely that God has a beautiful, elaborate, glorious plan in all of this pain, heartache, and suffering. Because see, I trust Him. I believe Him when His Word says, “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

I know that one day, I will see Hayden’s new body standing tall, with no wires or tubing. I know that one day in eternity Ryan and I will look in each other’s face and not see bags under our eyes brought on by exhaustion, stress and worry. I know that one day, I will see my Maker and we will have eternity to talk about how He used this life, this situation, this suffering, for a grander purpose than I could have ever imagined. I know those things for a fact because I put my trust in Him. If that is something that does not make sense to you, but something you long for – a hope, a peace, a future – reach out to me, to a friend, to another Christian, to your local church. And if you already have that hope, make today count for someone else. Do the thing – even when it is hard and unfair and lonely. Remember what you are working for today. Remember Who you are working for.

Perspective Providers

~ JohnnaCHensley ~ 1 Comment

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I sit down right now in front of my computer as Hayden sleeps, uncomfortably, with a low grade fever. He has been on his vent all day for extra rest time as well as additional treatments as he battles what, most likely, is a virus. Something you and I would just deal with, take a Zyrtec and move on with life; for him, it means extra time on his ventilator, extra treatments and additional medications. And it can turn ugly real quick, in a worse case scenario.

Tomorrow morning, we are supposed to leave town to take him on a special axis hunt at a deer lease fully equipped to deal with wheel chairs and disabled persons. We have all been looking forward to this outing for weeks now. I am not sure there would ever be enough time for me to list to you all of the events our family has had to miss due to an unforeseen illness. Heck, on the way to Hayden’s third birthday party, we couldn’t decide if we should show up to the venue or just go to the ER as he was on the verge of an illness. We are no stranger to missing out on parties, weddings, reunions – if it is a type of event, we’ve missed one, I guarantee you, because he has been sick.

If I’m not careful, I can begin to feel enslaved to his diagnosis. I can quickly allow Chronic Lung Disease to own me. I can let Short Bowel Syndrome be the patriarch of our family. I can let Hydrocephalus boss us around. It is very, very easy for me to quickly become imprisoned by illness.

I was reading about this man named, Paul, and this letter he wrote to this church in Ephesus. He wrote it while he was locked up. Literally. Chained in a prison cell for preaching about Jesus. Here’s Paul, writing this letter to the Ephesians and it was so profound to me – after he asks for prayers from the Ephesians, that he would continue to preach boldly about Jesus (even though it landed him in prison…) – he tells the Ephesians he’s going to send this guy, Tychicus, to Ephesus to give them a more complete update on how Paul is doing and to “encourage them.” I had to stop for a minute in my tracks when I read that.

So wait. Paul is locked up in prison for sharing about Christ. He’s going to send his buddy, Tychicus, over to Ephesus to share all the details of what has been going and it will be an encouragement to them? Makes sense, right? “Hello people of Ephesus – just wanted to let you know that Paul is chained up in prison for doing what he’s been called to do, but it’s all good. Be encouraged!” Insanity, right?! Welcome to the Kingdom of God. It’s like opposite day, every day. Take everything you think and flip it upside down and then you’ve nailed it. Want to lead? Be a servant. Want to be first? Then make yourself last. Want to be free? Then be willing to be chained.

I read a commentary last night that said, “It would comfort them [the Ephesians] to learn that Paul was being well treated and was free to preach to those who visited him [in prison].” As a prisoner, Paul was still preaching. He was still doing the thing he was called to do. No, he didn’t have control over his circumstances, but he was just living his life and hoping to encourage the church at Ephesus with just doing his thing!

It hit me today that rather than succumb to being in “chains” to Hayden’s chronic illness, I would rather just keep my nose down, do the thing, and encourage someone, somewhere. This morning, when Hayden wasn’t feeling well, he and I decided to pray for swift healing for his body. And that if God intended us to go on this trip tomorrow, that we would. But if not, that we would be ok with that outcome.

Then, this afternoon, we met a potential nurse. During the meet and greet, we were explaining to her that typically Hayden isn’t laid up in bed on his ventilator, but rather he’s usually in his wheel chair talking smack to anyone he encounters. On his own, Hayden told this woman (whom he had known for all of five minutes), “I don’t feel good today. But we prayed about it.” I just had to take a moment right there. It froze me in my tracks. I was reminded of the passage in Ephesians. Here’s Hayden, in complete chains to this crappy body that has to endure ridiculous amounts of daily torture, and he’s basically telling this stranger, “but let me encourage you – we prayed about it.”

I want to be more like Paul. And Hayden. I want to not bury myself in bondage of chains I can willingly get locked up in, but rather I want to be thankful for the opportunities I do have. I want to look for ways to encourage others even when, in earthly standards, it seems like all is lost. I want to flip these earthly standards upside down and look through the lens of heavenly standards and see that when I have every right to wallow and mourn, I choose to look to Him and be thankful and encourage others.

Hat Down, Guitar Up

~ JohnnaCHensley ~ Leave a comment

The blessings of homeschooling Hayden continue to be revealed to me daily in the little things that I never could have even conceived as being a blessing. A huge blessing is the quality time he and I get to enjoy with one another, of course. Quality time was something I was definitely not getting enough of when he was enrolled in public school, so that seemed like a “gimme” when we made the switch to a homeschool environment. But an extra perk of having quality time, is when there are shared interests between a parent and a child.

For Hayden and me, that became a love for Texas Country music. I have loved music for as long as I can remember. My mom used to let me go to sleep with the radio on and I would always get in trouble for singing, rather than sleeping. (Not that I can even sing! ha!) I love language and stories and the way music can tell a story and transport you to a different time and place is a beautiful gift from the Lord, in my opinion. He created music for us to enjoy and I certainly do. On days when I took care of Hayden alone without a nurse, he and I would use that special time to listen to all kinds of music. And being a teacher, I know that you can turn anything into a lesson and that is what music became for us. The lyrics of any song became a history lesson, or a literature lesson as we talked about rhyming and poems, deeper meaning of words and what we thought the song writer was feeling in that moment and why he wrote those lyrics just so, and how that same message could apply to our lives. This really became a special thing just for Hayden and Mom.

During Hayden’s shower each morning, he would have me “turn up his jam” and we would just sing and rock out to music on shuffle on the Amazon app. I often would guide Hayden through dissecting the music for deeper meaning and making connections to his own life through the music. I treasured this time with Hayden. We had a few favorite artists we would stream; lots of Texas Country and Southern Gospel, but very quickly Hayden’s all time favorite became Aaron Watson.

Back in August, Ryan and I went down to Gruene Hall with my brother and his wife for a couples’ weekend. Ryan and I met Aaron after his show and snapped a quick picture together. Hayden was just memorized by this photo and all the video I took of the show [per Hayden’s adamant request ;)]. He decided he needed a chance to meet Aaron, too, since Mom and Dad already had. And since Hayden is who he is, he just knows what he wants and he goes after it with confidence and vigor. This goes along with the lesson we have always told Hayden and all our boys; if you want something, go do it and don’t give up. That is exactly what Hayden did. He did some research and checked Aaron’s tour schedule on his website. He realized Aaron was going to be doing a show in Denton which was about 30 minutes from our house. Hayden decided this would be the perfect place to attempt a meeting. Not completely knowing how you just reach out to a stranger to set up a meeting, we decided we would pray about it. I must confess that historically, praying about something is not what I have always done first. This is deeply routed back to our NICU days and is a longer post for another day. But this particular day, in this moment, it was on my heart to teach Hayden that when something seems impossible, our go to has to be prayer. And so we prayed about it asking God that if it were possible, we would love to meet Aaron Watson and if it was not going to work out at this time, that we would be ok and not too upset.

I emailed the Aaron Watson website to reach out for a mailing address. Hayden wanted to write a letter to Aaron to make this request. We got an email back from Aaron’s tour manager, Clint, with the appropriate mailing address. Of course, Hayden saw this as an even better opportunity to email Clint (#microwavegeneration haha!). Hayden composed the following email to Clint:

Dear, Mr. Clint 

I am Hayden Hensley and I am 9 years old. I am Aaron’s biggest fan and we prayed And hoped that tomorrow we could meet Aaron Watson during sound check we live near Denton I read online about tomorrow’s night show and we even called rocking rodeo I looked up the phone number I had my mom called. Can I meet Aaron tomorrow I will understand if I can’t I will keep trying.
My favorite songs are:
“Fish”, “the underdog” “real good time”
“Barbed wire halo”
“That’s gonna leave a mark”
“Long vacation” (mommy’s gonna be funeral song)
“If you’re not in love” inspired me to always remind mom to flush also put down the toilet seat.

Thank you for reading this. 

I was so impressed with Hayden’s letter! I loved how he took those last two songs and explained how he related to them. It’s exactly what we had been doing over the weeks prior to this talking about meaning of lyrics. Clint was so precious and relayed the message to Aaron. We were floored when Aaron invited us to come to the venue the next day! I’m not sure Hayden had ever been more excited about anything!! The entire drive there he was seriously losing.his.mind!!! It was probably a good thing this meeting happened as a whirl wind because I’m not sure I could have tolerated this much excitement for too much longer!

When we arrived at the venue, I texted Clint and told him we were outside. Clint met Hayden at the front door and gave him a GIGANTIC hug as if they were best friends for ages. Of course, if you’ve ever been blessed to receive a hug from Hayden, I’m not sure he knows another way to hug. Clint ushered us in and the band was finishing up their sound check. Aaron was out on his bus and Clint went to go get him while Hayden just looked around and soaked it all in. It was his first time in a honky tonk 😉 A quick few minutes later, Aaron came out and again, Hayden just drenched him in a HUGE, excited hug! It was so precious to see Hayden share love so freely and willingly.

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Hayden and Aaron just jumped right on in. Hayden began asking so many questions and wanting to know about every guitar, every process of making CDs, every digit of Aaron’s phone number. Now, I can’t speak for Aaron, but just in my humble “mom opinion”, it seemed like he was a bit enamored with my darling, hilarious, adorable Hayden 🙂 🙂

There are so many details to this story that are just precious to my heart. I could take the rest of your day going through each one, but my favorite one of all is how Aaron had never met Hayden before and had absolutely no forewarning about Hayden’s medical issues, but he took one look at this child and saw him for who he was. Never once during that hour of visiting with Hayden – yes, an HOUR of his time was spent sitting on the ground talking to Hayden and answering all of his endless questions, and even playing him a tune or two – never once, did Aaron skip a beat.

As we wrapped up our visit, Aaron invited Hayden and our family to come out to his house over the Christmas holidays for game night with his family. Hayden was so excited and we were all looking forward to this upcoming night of fun. The next few weeks went by with Hayden texted Aaron on occasion and our excitement building for Hayden to attend his first ever Aaron Watson concert in December at Choctaw Casino in Durant, OK. That may not seem like a big deal, but for Hayden, who for years had been ridden with sensory processing issues and could not tolerate dimmed lights, loud noises, or clapping, for him to be looking so forward to a “sensory overload” was promising to us. The day of the show came and Hayden stayed in the auditorium and enjoyed the show for an entire hour! He eventually asked to leave early just because he was starting to get tired. He loved the show and afterward he got to catch up with the band and Aaron briefly before hopping on the elevator to go to our hotel room. Hayden’s two favorite things – Aaron Watson and a hotel! He was in heaven!

Over the Christmas holidays, we did in fact make it to the Watson house to play games, eat pizza and cookies, and just hang out. We all had a great time. Our boys had so much fun with the Watson kiddos who are very well behaved, so adorable and some may say sassy 😉 Hayden has a “crush on Jolee Kate’s sassiness.” (I think he can relate to the sass!) img_2962And Aaron’s wife is such a sweet, godly woman. I left there that night feeling refreshed and very “normal.” I realize that’s ironic… I mean, my family had just spent an evening with Aaron Watson and his family in their home which is a completely random, bizarre thing that I had never envisioned happening just a few months prior. But the thing of it is, they had invited us over and welcomed us into their home and treated us like normal people. So often, we get overlooked by our peers. We don’t get invited to family game nights. We don’t go to dinner with other families. I don’t think it’s because we’re unloved, I think it’s just that often times, people don’t know what to do with our situation. It’s overwhelming and it’s a lot to deal with and so many times Ryan and I feel complete isolation when we see other families around us doing family activities and we miss the boat. But here was a family who welcomed us in, treated us just like friends and were not intimidated or overwhelmed by us. Just like Aaron and Hayden’s first meeting, the Watson family just took us at face value, loved on us and poured into us more than they really will ever know. And that was such a gift to our family.

Aaron has a new album coming out February 24 of this year called, “Vaquero” and the backdrop of the photo taken for the album cover is a beautiful piece of artwork that was painted in Coleman, Texas by a spunky girl named Cal Johnson. Ryan’s parents still live in Coleman and so each time we visit Coleman, Hayden likes to go to the “Vaquero Wall” and take a picture, just like Aaron did. This particular photo below is one Aaron shared on his Instagram page. Not very long after this photo was shared with the world, Hayden was invited by Cal, to be a part of a news story from a local station in Abilene, TX. Hayden was more than happy to be a part of the newstory as he sees himself as #HPtheVIP anyway 🙂 but it was such a special treat for Hayden and us – we are so proud of how brave and confident Hayden is. Kathleen Barkley, from KTAB in Abilene did such a great job on this story! The link for the newstory is here: KTAB. Hayden has done such awesome things in his few short years on this earth with many more mountains to move I’m sure!

 

Our family’s friendship with Aaron Watson and his family has been such a fun, surprising blessing. I don’t know a lot of “famous people” – I mean, besides #HPtheVIP, but it seems to me that Aaron is the most sincere, genuine person who really loves his family, fans and friends. We’re lucky to have met him and forged a friendship with him!

While all of that is so very exciting, the takeaway for me that I have been treasuring is the way God has used this entire experience to just love on me and my family. I love the joy that Aaron brings to Hayden, I love the people we have met and shared with since Hayden’s story aired on KTAB, I love the person Hayden has become. I can’t help but think that if it hadn’t have been for me homeschooling Hayden, this love of music we share wouldn’t have happened. And if I hadn’t have taken a leap of faith and answered His call to pursue a teaching certification three years ago out of the blue when it made NO sense, I probably wouldn’t have been ready and comfortable homeschooling Hayden. It’s like an offshoot of trusting God in all things and taking leaps of faith along the way of life resulted in a strand of blessings for us, but hopefully also for others, that I could never have imagined.

I can’t help but ponder how many people see Hayden and our family and are even the slightest bit changed, or perhaps intrigued, by what it is driving this thing. It’s Jesus, y’all. It just is. If there is something you feel He’s calling you to trust Him on, trust Him. Do it. He loves you. Let Him love on you. It’s not an easy road to walk, but we’ve got to do the thing He called for us to do. I often think, if Hayden had been healed before birth and never had an ailment in the world, I would never have known you. I wouldn’t be here blogging to you and I definitely wouldn’t be the person I am today. I wouldn’t share our story so openly and boldly. And even though this path is a rough one, He’s done so much more with me on this rocky path than He would’ve gotten out of me if I had been on the smooth sailing, care free path. So for the that, I believe with all my heart His plans are good.

Our family loves you and we thank you for letting us share our journey with you. And for goodness’ sake, if you go to Coleman and take your picture just like Hayden (and Aaron ;)), please take Hayden’s advice: Hat down, Guitar UP!

Pre-order “Vaquero” here and get five songs instantly.

Follow Aaron Watson on Instagram at aaronwatsonmusic or follow him on Facebook at www.facebook.com/aaronwatsonmusic.

 

 

The Sore Truth

~ JohnnaCHensley ~ 4 Comments

There are so many things that are unfair in this life. This evening we discovered what (at this point) we’re assuming is a pressure sore on Hayden’s back. He’s never had any pressure sores any where so this is a brand new experience for us. Something that’s not a new experience, though, is my brain going straight to the worst case scenario. It’s unfair that my brain has a learned habit of immediately running through “what if” scenarios. My son is nine. How is this fair?

In this particular situation, I have no idea how this process will go, as this is our first true pressure sore. Which that alone, I should consider a blessing because so many in our “circle” constantly deal with skin breakdown issues. Hayden doesn’t mind the sore at all. He can’t feel his back. Which there again, I can see through the lens of being a blessing. The same way it’s a blessing he can’t feel his feet and is able to get lab draws and IVs placed there and it is pain free to him. I guess it’s all in how you look at the world. At this moment, he’s clueless about his back. I had to show him the photos I kept taking to even explain what it was I was talking about. He was too busy running a feisty FaceBook Live event to even be bothered by slowing down to worry with his back.

And that right there is what is so frustrating. His mind and his spirit are just fine and fired up, but his poor body just struggles in so, so many areas. Nutrition. Bowel/bladder. Scoliosis. Dislocated hips. Paralyzed. Apnea. Etc. All of these physical ailments that aren’t WHO he is, they’re just things our bodies need to function. WHO he is is a happy, hilarious, joyful, loving, quirky nine year old. And most days, I am so wrapped up in his personality and his laughter that I can take for granted and overlook all of those other areas that we deal with. Most people see him and their initial reaction is to ask if he’ll ever walk. Walking is the least of my worries for him. But I get it. I was there, too, when I first found out about his spina bifida. The thought of my child not walking just destroyed me. But now, that’s not even on my radar. Because, as I mentioned earlier, the focus changed and now my radar is filled with pulse oximeters, stethoscopes, ventilators, and beginning tonight, marking the size of pressure sores and hoping to God they don’t become infected or break down even more.

Some days it truly feels like we’re just holding Humpty Dumpty together with a roll of duct tape and a prayer. But isn’t that the same for all of us? We’re all broken, hot messes. Except most of us aren’t broken on the outside. The gift of Hayden is, though his brokenness is in his body, his spirit is whole and he’s taught me infinite lessons of love. No matter how this thing shakes out this side of heaven, I know that one day, his redeemed body is going to be nearly as beautiful as the One who heals it.