Would You Like the Leather Package?

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

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

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

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

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

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

No Refunds or Exchanges

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Remarkably Loved

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?

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.

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.

Home Is Where Our School Is

You know that nudge? You know, that really, really quiet inner voice in your spirit that ever so gently nudges you along? You have to get real still and real quiet to hear it. Lots of times life keeps us all so busy and occupied that we forget to get real still and real quiet to do much listening. Personally for me, there were many months of 2016 that I spent with my “listening ears” turned OFF instead of ON.

For those who know me, you know I am as stubborn and strong willed as they come. Yielding that kind of spirit to the Lord is something He and I work on daily. I felt God had been putting homeschooling on my heart for the better part of a year. It was something I often thought and wondered about. My gut told me it would be a wonderful fit for Hayden. My strong willed spirit said we had a plan in place, hours of ARD meetings behind us, a plan we had made and by all means we were going to stick to. I could’ve written a list of cons vs. pros and come up with a 100:1 reasons why public school was where Hayden was going to remain. But, somewhere, deep in the back of our minds, Ryan and I always knew there would eventually come a day when Hayden would “age out” per se, of public school.

In 2016, I entered a difficult time in my life. I was feeling down, discouraged, lost, abandoned. I think everyone endures different seasons in life. But this one was the roughest I had ever been exposed to. Now, I have never been one to have panic or anxiety attacks. Even with everything we have going on in our “normal” life, and people always telling me about the stress I’m under *eye roll emoji* ;), I never really felt stressed out – just “my normal.” Until 2016. That’s when I began waking up in the middle of the night from a dead sleep to be tortured by my own body. This got my attention.

I knew I needed to address some things going on in my life and get to the bottom of the cause. I met with a new doctor to review things from a medical standpoint, but I also began meeting with a wonderful Christian counselor who I have now grown to adore. It was during my work with her that I had a realization that possibly I was so strong willed and hard headed that the reason I felt so oppressed was of my own doing. It’s like if you were holding onto a rope so, so tightly that your hand has no more blood flow and the rope you will not let go off is actually what’s dragging you down deeper. The minute you let go and let God take over and trust Him, He pulls you out and the weight that was dragging you down can be replaced by freedom. There were so many things in my life that I was trying to control and worry over that the rope had me and it was dragging me down with fierce power lower and lower. As He promised, God never left me; He was just waiting on my old hard head to let go of the rope so He could carry me. I’m now reminding myself often that I don’t have to be in bondage to any thing, any worry, any person. I am free. And who the Son sets free, oh is free indeed!

This whole thing circles back around to homeschool because there was a day my counselor and I were discussing all the things that stress me out. We rated each individual item on a 1-10 scale and they were all mostly 12s. 😉 And as an exercise she asked me, “Picture yourself homeschooling Hayden. What’s the stress level doing that?” I didn’t skip a beat. It was a 0, no question. Five days later I withdrew him from public school. And would you believe, that right this minute, I can’t even tell you what all the 12s were on that list that day. The minute I heeded the call the homeschool Hayden, I had this incredible, overwhelming sense of peace and calm.

And you know what, I think Hayden did too. We began homeschooling in October, and I would say within just a couple of weeks, he was a completely different child. And I was a different person, too. The weight lifted off, joy was restored. Now, please don’t misunderstand me and hear that I’m never stressed and always organized! Ha! It’s still a hot mess over here and some days are just a wash and we try again the next day. I just think when you’re doing the thing He called you to do, the peace you find in that is so wonderful and reassuring that it makes those everyday stresses more bearable.

We loved his public school team and his teachers, therapists, principals, and they all bestowed their blessings upon us and wished us well. We still keep in touch with them and visit campus on occasion. Grayson still attends that school as a Kindergartner.

Hayden and I both adore homeschool. I treasure my time with him. His health has improved as he is more well rested and gets to sleep past 5:40am each day. He has energy in the evenings and has more play dates as a non-student than he did when he was attending school. The things Hayden endures daily to maintain a baseline of good health is vast and he was doing sets of treatments, catheterizing, g tube feedings all at school plus trying his hardest to get work completed like his other 4th grade peers. Now that we’re at home, he just thrives. I don’t even know how to put it into words. His sense of humor is back. He’s got energy. He has so much interest in learning about topics that he thinks of himself and he asks critical thinking questions – none of which ever happened when he was in public school. And it’s not because it wasn’t there, he was so exhausted and quite honestly, I think he felt an enormous amount of stress from the work load and trying to please everyone and do his best. Bless his soul.

None of us know how much time on this earth we’ll get to enjoy with our loved ones. For our family, this thought is always on the forefront of our minds. We want Hayden to have the best quality of life for as long as possible. And I would say Hayden’s quality of life has improved ten fold since October. Heck, so has his confidence level! I love the honesty, the humor, the love this sweet child offers the world. We may not be taking the STAAR test in this house, but that’s not what life is about anyway. It’s about living your best life, loving people and showing God’s love to others and if those are the only lessons Hayden takes away from his entire homeschool experience, then I have done my job as his mother.

Cheers!

As 2016 comes to a close and I reflect on all it brought myself and our family, my gut reaction is to scream “good riddance!” This year was one of loss and heartache, struggle and fear. But it was also a year of hope and relationship. This was a year that through leaps of faith and leaning on God, our family unit grew closer and our relationships deepened, both with each other and with God. There are many areas of my life that I will continue to strive to improve upon in 2017. And I think I will have 2016 to thank for that. For without the difficult times, truly enjoying the good times life brings us and embracing life fully, in both beautiful and in difficult times, would be near impossible. For me, I press on and look forward to being vulnerable and letting God work out the details of this life. I aim to let go of my desire to manage what it is that He is doing in us and through us.DSC03500.jpg

From our family to yours, we wish you a Merry Christmas and a Happy New Year! Blessings and love.

Looking at the Bright Side is Causing Me to Go Blind

I am not a self proclaimed pessimist. I feel more like a sincere realist who just leans toward the reality of how hard life is. For the sake of your feelings, though, I do my best to comfort you. I don’t want you to worry. So when I share with a friend or acquaintance something difficult our family is enduring, I like to tie it up with a cute little bow like, “It’ll work out” or “It just is what it is” or “What can you do?” and then *insert cheesy smile here*. That’s just my M.O.

 

However, lately, it’s exhausting. I don’t think God meant for us to walk around polishing up crappy situations and faking like it’s ok. Sometimes, life is hard. Sometimes, circumstances suck. Sometimes, it’s just not fair. And it’s ok to say that. That’s what makes it life. I guess experiencing the bad and the good in life is what makes it beautiful. But that doesn’t make it any easier to endure. I believe the hope I have in Jesus is the only thing for me that makes it remotely bearable. Dare I say, Jesus can relate? I think He knows what it’s like to be in a circumstance that sucks. And I think He knows about something in life being unfair. He gets that living on this earth is hard. That’s what makes Him relatable. He already did this. For us! And thank God He provided us a way out and a hope and a future.

 

Our family’s Struggle Du Jour is related to Texas and the changes it is making to its Medicaid program. I realize that this sort of stuff is a snooze fest to people who aren’t directly affected. A decade ago that would’ve been me. I would have felt bad for someone dealing with it, of course, but then I would’ve gone on with my life and never thought twice about it. I don’t get that “privilege” any more. I am right smack in the middle of it. I find myself again in a battle I didn’t choose to fight. And it’s really, really easy to want to just wallow in it and get down in the dumps. But surely that’s not what God wants for me. I think that’s what the enemy wants. (But he already lost the battle so he’s pissy anyway.)

 

Traditional Texas Medicaid is transitioning to a Managed Care Organization which, in a brief synopsis, means the state is privatizing health care coverage to a for-profit company (for us – our choices in our county are Children’s or Amerigroup). My son has TWENTY FIVE doctors, medical equipment companies, pharmacies, nursing agencies, and respite agencies. I am “blessed” with the joy of calling each one of them and asking them which MCO they’ll be accepting. Then I get to use math, or maybe it’s statistics?, and take an average of which MCO – either Children’s or Amerigroup –  has the majority of our specialists and then pick that plan. The rest of the doctors we need? I guess I’ll just have to choose new ones. (Great continuity of care, right!?) There are 5,000 sweet, precious children in Texas on a medical waiver, MDCP, just like Hayden who are doing the same thing. And we’re fighting like crazy and doing all we can to fight this change and feeling completely ignored by the state of Texas. At times like this, looking on the bright side of life is the last thing I’m interested in doing.

 

For me, I could easily lose myself in the fear of the possibility of having Hayden’s nursing hours taken away. The first thing that will happen when this switch is forced on us is a new assessment by the MCO and in that, the effort would be to “cut costs” – I mean, this is a for-profit company we’re talking about. I just can’t imagine their goal is offering us all of the coverage we’re used to using over the last nine years. The unfortunate thing is, we only have one nurse at this time working with Hayden. We are approved for 24/7 coverage. But we have one nurse, due to staffing issues and low recruitment by our staffing agency. That means every single night of the week, Ryan and I take care of Hayden while he’s on his ventilator. We administer his bowel program every morning at 5:40am. Every single night. Every single morning. And one day a week, during the day, I care for him and our other kids alone. And two days a week, during the weekend, Ryan and I take care of the kids as a team. Hayden needs a one on one nurse with him 24/7. A doctor said so. But there’s just no staff at this time, and so as parents, we step up and take care of our child, just like you would do, too. My biggest fear, though, is that the new MCO will come into our home and say, “Well, you’ve been fine since July without 24/7 nursing help so, you’re good without all these ‘unnecessary hours’. *DENIED*”

 

I know I’m not supposed to have a spirit of fear. God told me that in 2 Timothy 1:7 when He said, “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” I just want to be very honest in this moment, and maybe I’m the only one who will say it out loud, but do you know how HARD that is?? Maybe it’s just me. No? It is hard to trust God and just “know there’s a plan.” That is a very difficult path to walk. I’m not sure I have any answer for that except to just call out to the Lord. I have no other tips or advice. No special meditation mantra or some self-help book that will give you the strategies you need to “conquer fear and be brave!” Sometimes, the only the thing left to do is to hit your knees and cry. Literally. He is your Father. Your Dad. He’s so sad for you when you’re sad. He hurts when you hurt. He knows your heart is pounding in your chest and you’re feeling anxious. He understands. The good news is, He can see you on the other side of this valley. He can see you on the mountain top. And the thing is, He’s the One who can give you the boost to hoist you up the side of the mountain as you claw your way out of the valley. It may be that I spend the rest of my time on this earth in a valley. Truly. I may always have struggles and never feel I’ve reach my “mountaintop” of peace and freedom. But, beloved, if your trust is in Jesus, I assure you, He will take you to the mountaintop. And it will be for eternity. And these trials of this world will just make the view from the top of the mountain so much sweeter because you’ll appreciate the heck out of it!

 

So, if you’re tired of looking on the bright side that this life has to offer, I am with you. Thank God there’s a calm after this storm. Lauren Daigle has a song with lyrics that say, “When You don’t part the waters I wish I could walk through, When You don’t give the answers as I cry out to you, I will trust, I will trust, I will trust in you.” I’ve been through some waters I did NOT want to walk through and for the life of me I couldn’t figure out WHY God would want me to walk through such nasty, muddy, gross waters! But all we can do is trust in Him. And try to be honest with each other when we’re hurting and when life is hard. We can’t win ’em all. But we can love on each other when we’re in the valley.

 

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(If you want more information on the fragile children being affected by this Medicaid change and for ways YOU can help, visit protecttxfragilekids.org or follow @fragilechildTX on Twitter.)