On Guard!

A person I love and respect made a post recently about “cancel culture” referring to the most recent movement of many people to cancel Netflix due to the release of the French film, “Cuties.” In her video, she states she watched the film and although she hated it the entire time, she needed to watch it and encouraged others to watch it rather than “cancel culture” quit Netflix. I have to respectfully disagree. Remember the old song lyrics, “Oh be careful little eyes what you see?” I put this into that category.

Listen carefully – it is ok to guard your heart! (and eyes. and ears.) You can still have meaningful conversations with your children about the dangers of apps like TikTok and about the oversexulization of girls/children in the world WITHOUT watching “Cuties” first in the name of “research.” I have not watch an R rated move in I couldn’t tell you how many years. I felt my own convictions over movies long ago, and my husband and I decided years ago we just wouldn’t watch movies rated R. (There are exceptions to this on occasion for movies that are true stories but are rated R for graphic violence/blood shed like in The Passion of the Christ, etc.)

I’m sure that’s laughable to many of you. Maybe I’m the local town prude. Do I care? Not one bit. It is fine by me. I control what I view and listen to and I know myself enough to know what I can and cannot handle. Images and ideas – they stay in my mind for YEARS and so the things I choose to put into my mind, have to meet some pretty high standards before I just open the door. In fact, there have been times in my life when someone is sharing an inappropriate story or joke and I have flat out asked them to stop. If that feels uncomfortable to you to ask someone to change the subject, maybe you just excuse yourself from the situation instead. But do something! Don’t just sit idly by and allow input into your mind when you have control over what you see and hear.

I have never heard the song, “WAP” nor read the lyrics and I never will. I don’t need to traumatize my mind to remain “relevant.” Based on the chatter online and a few images I’ve seen of that particular “artist,” I can very much declare that that “art” is not something I will be introducing to my mind. And that is ok!

**Caveat here: I absolutely still address real, painful issues – I don’t simply hide under a rock when it comes to issues like human trafficking, abuse to children in the foster care system, poverty, abortion, etc. I pray for God to break my heart for what breaks His and those things break His heart. I research and learn about topics that even though are painful to learn about, are still necessary to share and teach my children about. We have many discussions about the Holocaust and slavery and all kinds of topics that are hard to process because of how sad and horrific it is. I simply am trying to convey here that I don’t willingly view certain images in the spirit of “gathering data.” You can understand something is inappropriate (i.e. WAP) without having to actually watch it with your eyes.

I tell my kids all the time: “It is ok to live a life other do not understand.” In fact, that’s literally the whole point of the Christian life anyway. The last place a Christian needs to be is fitting in. Maybe you won’t be as relevant at the water cooler? Great! If you’re following Jesus, you were called to look DIFFERENT. This world is NOT your home. Fitting in, relevance, trending – these things can not be your idol while you simultaneously call Jesus your Lord. He wants all of your heart. And soul. And mind. So, you have permission to guard those things!

Guard your mind. You can cancel Netflix if you want. In fact, throw your TV on the curb. If you’re not doing something to look different than the world, what are you even doing? Use this as an exercise to see what you’re willing to sacrifice for Christ – mainstream radio? Netflix? Social media? What is your idol? If you can’t let Him lead you in the small things, how will He ever be able to use you in the big things?

I’ll end with this. If we sit in America in our air conditioned homes and wonder what lot we’ve been given that if we cancel our favorite streaming subscription we may persecuted for being part of the cancel culture, then we are SADLY so far from the truth of the gospel that it’s frightening. Literally, this second, Christians are in chains for Christ. They’re being slaughtered for Him. And we aren’t sure if we can make such “sacrifices” as cutting back our TV time? God help us all.

“Above all else, guard your heart, for everything you do flows from it.” Provers 4:23

Visit Voice of the Martyrs to learn about how you can help Christians under persecution: https://www.persecution.com/response/

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.

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.