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

He Love Me, He Loves Me Not

Not everyone has wild adventures worthy of a cable television reality show. But that does not mean life is not an adventure. There are days my homeschool classroom is worthy of a Discovery Channel camera crew filming a documentary about mothers who eat their young. Life is the adventure you choose to make it into. That is what makes it exciting. Every single day, we get to decide what music will be played when the credits on this show called “life” roll by. Will it be a slow, sad song? Or an upbeat, happy one? 

I used to believe that because I was not able to pick all of the circumstances life handed to me, then they were second rate circumstances. (Because, certainly, I could do a better job than God assigning circumstances to myself and those around me.) But now I realize, I do get a choice; I get to decide how to respond to the life I have. I get to decide if I would like to embrace a chaotic life – filled to the brim with doctor appointments, healthcare workers in my home, and enough boxes of medical supplies that we could build a fort large enough to house an entire elementary school – or if I want to stall out and wallow in the life I ended up with. 

I am no green thumb, but I love to get fresh flowers. The best is when my husband and sons bring me flowers out of the clear blue sky. Now, I know the flowers will wither and die. That is the end game for a beautiful bouquet of flowers every time. However, I still love to receive them. I cut the stems, just so, under running water, add the plant food that is rubber banded to them stem, and fill a beautiful vase with beauty, knowing full well, these won’t last forever so I better treasure them while I have them. When I am given flowers, I just love them and care for them and enjoy them. I don’t analyze each flower and mourn prematurely for the day in the future when they will wilt and I’ll have to toss them out. Rather, I smell their fragrance, stare at their colors, and even use them as a visual during that day’s homeschool science lesson. 

The point is this, whether or not I had been able to select every circumstance of my life, or if I had been able to find the best of all the flowers available and put together the “Queen of Botany” bouquet, unless I choose to embrace it, it will vanish before I have had time to enjoy it. Every day is actually a gift that we have been given. God has chosen each of us and placed us in this moment, in this space for a reason. But He’s also gifted us the choice to decide what we do with our circumstances. Are you going to embrace life? Put the plant food in the vase and fill it up and enjoy? Or are you going to leave the flowers laying on the counter and refuse them water out of protest that they weren’t the exact shade of aubergine that you typically prefer? 

‘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

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.

 

 

This _____________ Life

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

 

What are you working for today?

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

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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

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

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.