That Introvert Swagger…

I currently find myself with quite a rare gift upon me. I’m in my house with only Hayden. No nurse. No other kids. No spouse. Just Hayden. And he’s sleeping. As an introvert, the pulse of our family unit haunts me. Constant people, commotion, chaos. And no way around it. It’s just the collateral damage of this life.

If you are an introvert, let me see if I can make you squirm in your seat. You ready? It’s going to hurt. Because I am a homeschool mom (my choice, I know), I am always with my kids. But they’re MY kids and so if I end up in an argument with a three year old, that’s my business. However, because one of my kids is significantly special needs, he qualifies for nursing help 168 hours a week. That’s all the hours in a week, if you didn’t know. All of them. Every. Single. One of them. You hear me, introverts? ALL. All the ones when you want to walk around the house in your sweats and no bra. The ones when you and your husband get in a fight about which one of you said they would pick up some bread. The hours when your kids are off the chain and you’re not sure if you should have them or yourself committed. The hours when your phone rings and it’s your mom calling with a personal family matter to discuss. All of the hours that you treasure dearly and need to sit quietly in your own space to recharge. They’re gone. Life took those hours away from you and instead gave you a constant turn over of staff in your home whose sole purpose of coming to your home is to make a sustainable income. Your home – your sacred haven of respite and peace, where you recharge – is their “office.” It’s where they get their insurance benefits and rack up PTO. How do you balance this?

I want to be clear, although I’m an introvert, I don’t hate [all] people 😉 **little introvert humor for my friends who feel me** I enjoy being with people and I love having meaningful conversations with people. But I can only handle so much until I need a minute to refill my tank. And the refill station is what has been out of order in my home. I LOVE having our nursing help. I LOVE the work our home health therapists do for Hayden. I LOVE that there are people who love and care for my son and my family as much as I do. I really do. This is NOT a burn on them. This is a statement that there is a cost to having help and it’s one that until you’re living it 168 hours a week, you may not realize how expensive the cost is.

And so, as we are without a nurse on this particular day, the stars have aligned for me to have a [relatively….] quiet home (I still hear the hum of the ventilator through the baby monitor and the drone of the oxygen concentrator in the hallway). For this brief moment in time, I have the clarity of mind to revisit my oh-so-sporadic blog for a bit to share just a tidbit of my life with the world.

There’s no magical fix. There’s no earth shattering advice I have to offer. Just some perspective on what life is like on this side of the world. Moms like me love our children deeply. We would do anything for them to keep them safe and protected and healthy. And sometimes for us, that means just sucking it up and accepting that for this season, our homes are not 100% our own. We recognize that we live under a microscope. That perhaps although words aren’t spoken out loud, observations are made by visitors in our home who get a front row seat to some of our worst days. The days when your kids are misbehaving and fighting, the days when you feel like a loser of a mom, the days when you burn the dinner and stink up the house and are embarrassed, and the days you lock yourself in your room to cry on the floor in peace for just a quick minute before you rally and go back into battle.

Yet even in the chaos, I am completely convinced that this circumstance and this assignment has been given to me by the Almighty and in His infinite wisdom He has appointed to me this amazing responsibility and gift. There is a tension that it is ok to sit in for a bit; the tension of having a rough day but also trusting completely that God has orchestrated and put this scenario in place perfectly for His glory. And at the end of the day, I give Him the praise for this unique perspective and for this daily struggle because through it all, it draws me closer to Him and refines me to make me more like Jesus. And I’m just hardheaded enough that I’m sure He needed to pull out the big guns for someone as stubborn as me. 🙂

I read a quote today from Tony Evans in his new commentary, “The Tony Evans Bible Commentary.” In Genesis 32, Jacob wrestles with God, has his hip injured which results in a limp and is then renamed Israel. Tony said, “Jacob’s life would never be the same, because he was now limping because of his hip. This suggests that any man God blesses will possess a limp. God will create something in that person’s life that makes him despair of his own strength and lean on the Lord’s instead.” Amen and amen! God bless the limp that He gave me, for from it, I am blessed and know Him.

The Day the Linen Closet Died

So. Many. Boxes. Just dropped off in my living room and I was expected not only to know how to use the items inside, but also to find a spot big enough to store them in an organized fashion so all the many [many!] hands working in my home would know where to find the supplies they needed.

That’s how this thing works. You take a baby home on a ventilator and the housewarming gift you receive is the presence of a DME (Durable Medical Equipment) company and all of their “goodies” being offloaded to you. A welcome offering. A tease of what the next decade or more (if you’re lucky) will bring. Loads of supply shipments – chux pads, ventilator circuits, suction catheters, pulse oximeter probes.

And so begins the “overtaking of all the space” movement for families like mine. Our home is now a PICU Omnicell. The storage for beautiful guest towels and extra bedding is replaced with bins and tubs attacked by a label maker. Organization is key when there are staff members working in your home around the clock and they all have to access the closet – previously known as your beautiful linen closet – to do their job.

Labels read “Suction Canisters” “Gloves” “Oxygen Tubing” “Vent Filters” – This is your life now. Welcome to it.

I caught a glimpse of our linen closet last night. The door was open and the hall light was on. I just sat and stared at it for a long moment. I pondered out loud to Ryan, “I wonder what normal people have in their hall linen closets?”

We’ve lost our garage space, our hall closet space, our kitchen cabinets, our pantry. It’s all dedicated to storing and organizing all the equipment required to keep a human alive. We trip over bikes in our garage because we have no place for them, since the bike storage is taken over by catheters and sterile water. We keep an Instapot on top of our dryer because an entire kitchen cabinet is full to the max of meds, syringes and ports. We hide PT benches and equipment behind our couch so we appear “normal” when people come over.

It’s an odd feeling to contemplate what a normal house would look like, knowing that if you had a “normal house” it would be because your child wasn’t living in it with you.

In random moments like this – catching a glimpse of a linen closet in the light or seeing your neighbor’s tidy garage while you’re out on a walk – that you evaluate what your priorities are. Sure, I would love a Home & Gardens Home, but that wasn’t in the cards for me. Learning what you have to let go of helps you realize what you want to hold on to.

Our house isn’t perfect, but it’s full of sweet memories and little people and loads of {loud} fun. And honestly, I think I like that more than a house that looks like a Container Store show room.

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.

Out of Body Experience

A quick story. An experience unusual for me.

The setting: my house.

The characters: Mom, Grayson, Ethan, Foster Daughter.

Missing: Ryan and Hayden (who were inpatient overnight at a sleep study in the hospital.)

Once upon a time……….

A rare, cool summer evening, that’s not only tolerable to be outdoors, but pleasurable was gifted to us this evening. Late summer nights are my favorite. When the sun isn’t ready for the day to end just yet and it keeps hanging around just a little bit longer. Popsicles and bicycles, sidewalk chalk and neighborhood pickup basketball games. These sights and sounds of summer I treasure.

I had taken up residence in my lawn chair out front, watching the boys riding bikes up and down our quiet street, while little Miss and I played with bubbles and sidewalk chalk. No one was fighting, which is an extremely rare treat. 😉 Each of us, just enjoying each other’s company, wishing the night wouldn’t end. We migrated to the back yard and the kids jumped on the trampoline and climbed on the jungle gym while I sat on the back porch and just watched and listened to their laughter. We stayed out past our normal bath time because it just felt right and why not? – it’s summer. This moment here is what summer nights were made for. Late night fun outside, just riding bikes and jumping on trampolines, playing pretend with the neighbors and your siblings. Not a worry in the world. Not in my world anyway. I was free – for just a moment.

I was free from worry about what time the cath timer will alarm. I was free from dragging the suction machine around. I was free from the beeping reminding me to check the emptying oxygen tank in order to raise up saturation levels. I was free from being called inside at a certain time (regardless of the season or the amount of beauty the night held) to begin night treatments. I was free to sit on the back porch and just enjoy my children being children. I got to watch them having fun and enjoy life, which in turn was an enjoyment for my own life. I was free to do these things.

But I wasn’t free of the guilt of enjoying the freedom. Part of my heart wasn’t with us, even just for a night. The piece missing was having a legitimately fun evening inpatient because that’s what he enjoys – meeting new nurses, playing TV games on the hospital network, scanning his meds and his hospital bracelet with the handheld device. He doesn’t enjoy riding bikes, jumping on the trampoline, eating popsicles. I shouldn’t have felt guilty; he was having a magnificent summer evening with friends. But I can never forget. I’ll never forget I live two lives. I’ll never forget I have two families and even when I switch back and forth from each of my mom roles, I’m never free of the other one.

Moral of the story: If you have the freedom to watch your kids being kids without a timer telling you when you have to go empty their bladder, administer their med, perform their respiratory treatments, replace their oxygen tank, turn on their ventilator – please enjoy that time. Look up from your phone, be present with them and be thankful for that time and freedom. And try to put the guilt to rest, even if it’s just for one beautiful, cool summer evening on the porch.

Box of Fun!

Being a busy special needs mother with two other “typical” boys keeps my schedule very full! Unfortunately, with so much of my time being dedicated to Hayden’s doctor appointments, therapies, and taking care of his physical needs, Grayson and Ethan often bear the brunt of mom’s “busyness.” This month, rather than a Date Night In Box for Ryan and I, I decided to get a Kids Night In Box so that I could have some dedicated quality time together with the boys that was just fun time with mom. And best of all, I didn’t have to plan any of this super fun activity because the box comes with everything you need!

The theme of this month’s box is Reduce, Reuse, Recycle which was a big hit at our house! This year, we have started a family garden – it only has six plants in it, but it’s a start! (And we even have a compost pile!) To see how excited Ethan was when our first bell pepper bloomed in our garden was precious. And it also convinced me the boys were going to FLIP over this month’s box.

This box was really super fun and it came with a beautiful board book, “Don’t Throw That Away” that had tabs you pull back to see more words and pictures. The kids loved taking turns revealing answers to what could be made out of “trash” when we don’t throw it away, but repurpose it. The boys enjoyed making a “bubble wand”, as they were calling it, using materials provided in the box and we also got to paint together – and no one fought! **insert praise hands here** This entire box was fun, practical and educational, but not in a  stuffy, boring kind of way. The kids and I really enjoyed it and the time we intentionally took to spend together was priceless.

If you would like to try a Kids Night In Box or a Date Night In Box, you can click on the link below to order! These boxes are so beautifully and thoughtfully put together and we love getting our monthly subscription, but even more than that, we love knowing we will have dedicated time spent with one another each month.

Night In Boxes

Throw the Dang Seed!

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

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

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

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

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

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

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

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

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

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

johnna@johnnahensley.com

Like a Sore Thumb

It’s sports season again in our household – and you know what that means. Me and thousands of my closest friends will come out in droves to frequent the local public school gyms to watch our kids show of their skills they have honed in the hourly practice of the week. Honestly, it’s adorable to see little kids in matching uniforms trying their hardest to make a slam dunk – or just make a basket into the right team’s hoop.

Even though he hates it, we make Hayden come with us to at least a few sporting events per season to show support for his brothers. Heaven knows I have spent many years dragging his brothers to appointments they did not want to go to, so Hayden can do his brothers a solid and attend an event or two and show support. We are a family. That is what families do – they go to events they don’t care about and put on a smile and suck it up and deal… then their therapist thanks me later for the unending material. 😉

The part I hate the most, though, actually takes place well before I enter the building. It’s the PARKING LOT nightmare! Recently, there was a tournament going on for both of our younger boys and we had to split up the parenting duties. My husband had our two boys with him and I had Hayden with me. I had stayed back home to complete Hayden’s morning treatments and bowel management routine, missed the first games and then Hayden and I were planning to meet up with the rest of our family at the gym.

The two of us pulled into the parking lot in our handicap plated, beaten up, wheel chair deploying van looking for that “golden ticket” of a handicap spot with the lines painted on the right hand side of the parking spot for our ramp to deploy. I call this spot the “golden ticket” because without those lines in the correct spot, Momma has to back “the beast” in to a non-ideal spot to get the ramp to deploy with enough space, and no one wants to endure that fiasco of backing into a parking spot, let’s just all be honest.

This particular [insanely windy] day, there were NO handicap spots available at all! No “golden tickets,” no spots near the end of a row I could make do with, nothing, nada, zilch! So I had to park wayyyyyy back in the lot and deploy the ramp there and then push Hayden from back there. Obviously, the basketball game was over when we made it to the front door of the school. (Did you really expect this story to go any other way?? ha!)

But that experience got me thinking – wouldn’t it have been so much easier if the parking spot I needed was just like what everyone else was using? Just a plain Jane, run of the mill parking spot. No particulars necessary. No need to stand out like a sore thumb and have only a specific handful of spots that would work? But that’s not our lot… Hayden and I, we were destined to drive around and forced to be picky about where we landed. We have to have special license plates, even, granting us permission to park in the “special areas.” And I’ll tell you, for an introvert trying to fly [quietly] under the radar, parking lots just make me sweat. Profusely. (And I’ll save my anger issues for those citizens who take advantage of handicap parking spots for another post or, perhaps, for my tell all book….)

Here’s the deal, though. I was called to stand out. I was called to NOT match all the other cars in the parking lot. To not blend in so nicely. The parking lot was full of people just blending in and not sticking out. All the cars look the same, park the same, and fit between two beautiful and straight white lines. But not my car. You can spot my car from afar. Special license plates in a special area of every parking lot with crazy diagonal lines all over the place and signs posted that essentially read, “Look out world! Something different is headed your way!”

But you know what? If you’re following Jesus, He told you to stand out too. Me and you. We have got to be the salt and the light of this world. We cannot go through life just blending in with everyone else, flying under the radar. He did not call us to that. He did not tell us to do our best to blend in and find a place in this world that’s just perfectly easy and laid out, and then land there and never look back. What in our daily lives is making us look contrary from the entire world? Something about us needs to be screaming, “Look out world! Something different is headed your way!”

I am so thankful to be in a life and in a set of circumstances that FORCE me to stand out because it makes it so much easier. It almost feels like I was gifted the easier version of “Salt and Light 101.” If these difficult circumstances that I wake up to everyday make it easier for me to stand out in the world and to point others to Christ, then I welcome this scenario. And once I am out of my comfort zone, it is so much easier to look around and find even more ways to keep standing out in this world. I do not want to conform to the world. I want to look like the opposite of the world so that others might see me, struggling in the wind to unbuckle my son’s wheel chair from the van floor and rush into a basketball gym only to miss a game, and go, “What is the deal with this girl? Something is different here – Who is giving her this joy and resilience that not even a rough Saturday morning in the suburbs has the ability to dim her light?”

And I want that for you, friend. Because the joy isn’t in the perfect circumstances; the joy is in Jesus.

“You are the light of the world. A town built on a hill cannot be hidden.  Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 1In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.” – Matthew 5:14-16