A Paralyzing Gift

I’m not one of those people who always looks on the bright side of ev.er.y.thing. I try and make light as best I can, but I’m realizing that it’s ok to admit things suck sometimes. It’s ok to feel sad. It’s ok to just sit in yuck for a bit. My biggest pet peeve is when someone tries to “fix” everything for me when I’m having a rough moment. My favorite thing is when someone will just sit in the yuck with me for a minute; that’s really all I need.

However. There really are bright sides to situations that suck. There really are ways it could always be worse. And there is always something to be thankful for. For example…..

SUCKS: My son can’t feel the majority of his body – can’t walk, never will.

JACKPOT: My son can’t feel the pain that comes along with a 95 degree curve in his spine.

I get so wrapped up in the day to day of doctor appointments and medical conversations that often times I forget to stop and actually think what these diagnoses might feel like to a “typical” person. I remember one time, my middle son was maybe two or three years old at the time and was having a major allergy and respiratory issue. I took him to this pediatrician and he offered up a treatment plan and then he said, “If that doesn’t work, we may need to do some nebulized breathing treatments.” I was SHOCKED. How could my sweet, perfect little angel child need a nebulizer?! At this time, I was also doing nebulized treatments for Hayden 4-5 times a day. But that was just Hayden; it didn’t phase me. When the realization hit me of what it would be like for a typical child to have to sit still and wear a mask on his face multiple times a day, I was appalled at the idea.

The same is true here. Hayden has scoliosis and always has…. I’ll bet there was about 15 minutes of Hayden’s life that his body wasn’t out of whack somehow. And those would be the first 15 minutes – and even then, his legs never have stretched out straight, so when they measured his length as a newborn they had to bend the measuring tape to count a measly 16″ inches long. Hayden’s worn a thoracic lumbar sacral orthotic (TLSO) for about 10 years of his life. It usually corrects the curve decently. But about four months ago, his curve started to progress beyond what his TLSO and his seating could accommodate. In the span of four months, his spinal curve had progress from 62 degrees to 95 degrees.

When I first processed that information I ran it through the filter of myself….. here’s another risky surgery we have to debate about doing and then sign consent for. Here’s another long recovery process, more hospital stays, more nights away from home. But then I had this weird moment of clarity when I thought, “What would it look like for a ‘typical’ kid to have a 95 degree curve in their spine? Surely it can’t feel good.” And I realized the fact that he can’t feel the pain was a gift. How happy would Hayden be and how encouraging could he be to others if he was in a constant state of excruciating pain and on medication to treat his pain? At this moment, he can’t feel or move his body, but he’s literally the happiest person I know. I’m able to see the numbness, the absence of sensation as a blessing to him and to us.

It reminds me of Joseph from wayyyy back in an Old Testament story. Joseph had been through the ringer with some circumstances that he didn’t choose (same…) and just when he thought he had finally hit smooth sailing, he was framed and charged for a crime he didn’t commit and it landed him in jail. He sat in jail for two years, but the repercussions of that jail time and some dreams he interrupted for just the right people actually ended up helping an entire nation of people. (Plus, most of Genesis ends up being about Joseph and from about chapter 39 on through the end, you can see how God used Joseph and had actually gifted him multiple trials that were for a greater purpose than just Jospeh.)

So for today, I’m appreciative of the gift of Hayden’s numbness and a body that offers him respite from an amount of pain no child should have to bear. I’m choosing to trust that God’s plan for Hayden’s life, my life, and your life, friend, is for a greater purpose than just for ourselves.

The Old Ball and Chain…

At weddings. At restaurants. At church. At family reunions. At birthday parties. Name an event. Name a place. It’s there. The ball and chain is there. It never stops and it never goes away. When you just fell asleep. When you just sat down to a hot meal. When you just got into a good conversation with a friend. When your kid wants to cuddle with you. The ball and chain wins every.single.time. It owns you. You do what it says and you do it quickly. 

Pulse oximeter: a medical device that indirectly monitors the oxygen saturation of a patient’s blood and changes in blood volume in the skin

Translation: ball and chain

My son has been on constant pulse ox monitoring for 11 years, three months, and 17 days. 96, 832 hours the pulse ox has been monitoring him. (Give or take a shower or two.) That’s 96,832 hours my ears have been listening to see if my son needs me. I’ve been on call for some 96,000 hours. For all of this time, Hayden has had a pulse ox on his toe revealing to us what he needs. If he sats too low, he needs more oxygen. If he sats too high, he needs less oxygen. If his heart rate is too high, he may have fever or have distress somewhere in his body. If his heart rate is too low, he may be sleeping too hard and needs to be stimulated. There has been an occasion or two where the pulse ox saturation number read as a dotted line during emergency events while I was actively bagging him, breathing for him to try to keep him alive until the ambulance arrived. But more often, the pulse ox is just there as an appendage reminding us that Hayden is still alive, still breathing, heart still beating. 

The pulse ox and I have a love/hate relationship. Essentially, it loves to do its job and do it well; I hate it and cannot stand the sound of it beeping. Yet every time, I get up. I go to it when it calls me. It beckons, and I come running. It is a necessary evil. Its annoying beeps remind me that my son is alive and breathing and that his heart is beating, which is a blessing. I know many, many mommas who would give anything to hear their child’s pulse ox alarming just one more time. And so, I will adjust my posture from one of annoyance, to that of gratefulness that my son and all of his equipment is still here with me, for today. To those mommas out there who no longer have your child’s equipment beckoning you, I honor you. I see you. I respect you. I love you. You and your child are teaching me. 

Is there something in your own life that you need to change your posture about? What is it that needs a perspective shift? You can choose that change. Right now, this minute. You get to decide your mindset about it. Is there something in your life that is a constant irritant, but if you could just take a step back you could label it as a blessing rather than a hindrance? Do it. Embrace it now. Don’t let another day pass before you learn to relish the ball and chain. 

That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

2 Corinthians 12:10

‘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.

Hat Down, Guitar Up

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.

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The Sore Truth

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.