Today, my oldest son, Hayden, is 15! Monumental, sure, but also natural, for most people. We all remember turning 15, right? Wanting nothing more than the latest fashion jeans of the season, a dinner out with friends at your favorite restaurant (sans your terribly embarrassing parents, obvi) and to have your name put on the roster of the local Driver’s Ed Academy. But that’s not what today holds for us, although it is still a celebration, no doubt.
Today feels a bit surreal. I’m walking into a time and space, a day I never thought would exist, if I’m completely honest. Hayden was born with a neural tube defect (spina bifida) and given an entire mound of odds stacked against him. I’ve learned more about God, His love, self sacrifice, and eternity in 15 years than I ever could have learned in a lifetime of “normal.” Although it’s been the hardest thing I’ve ever done, parenting Hayden has stretched me and molded me into such a better version of myself than I ever dreamed possible. The lessons and love God has shown me with this child as His instrument are more than I could ever begin to count.
I’m actively in the throes of writing a book about hope. Imagine, when by the world’s standards our situation looks hard, grim and hopeless, God has filled me with so much hope I can fill an entire book about it. There’s pain in the book too; but that’s what makes the hope so much sweeter. God has hope for you, friend. If you’re feeling hopeless and in despair today, please know that’s not all there is. God can use your pain for your good and His glory.
An excerpt from Chapter Six of “Hope in Him”:
He came into the world quietly, not a cry or sound, but he was breathing and present with us. He and I both had surgery on the same day – mine left me with a C section scar marking his safe arrival; his, a scar on his back to close the gaping hole he arrived with. When most babies are doing skin-to-skin bonding with their mothers minutes after birth, Hayden spent his first moments in the world lying alone on an O.R. table having his back sewn shut to stop the leaking of cerebrospinal fluid from the defect in his spine. Becoming first-time NICU parents felt like we had been thrown into the deep end of an ocean… during a hurricane… with no life vest… and sharks circling us.
I’ve come to learn that when you’re broken, God has more pieces to work with. Becoming a special needs parent broke me into a million tiny pieces. I treasure life in a way I never would have before this experience. I have a new, fresh perspective on life. And I have a daily opportunity to live out sacrificial love and die to self. I will never again look at situations, circumstances, or “stuff” the same way. As Christ-followers, our identity is in HIM – not in the things we own, the clothes we wear, the jobs we have, the vacations we take. None of this can define us. Christ is who defines us. If and when all of the things in your life disappear, will you allow Him to be your unchanging rock and your steady fortress?
Happy 15th Birthday, Hayden Patrick “HPVIP”! You are kind, thoughtful, sarcastic, witty, ornery, and the cause of most of my gray hair. You enjoy life to the fullest, you love people so well, and you have a major, horrible addiction to your phone, but we love you anyway. 😉 Thank you for the privilege of being your mom. For the lessons you’ve taught me and the entire world. I’m so proud of you, son!
Years ago I wrote a blog post addressing what I felt the role of the “church” should be in the pro-life/abortion space. The overall sentiment was if we’re wanting to be the hands and feet of Jesus we should show up for those who are in such turmoil and distress that they would choose an abortion during a crisis pregnancy. We shouldn’t be picketing outside of Planned Parenthood and condemning women who are having to go through tremendous pain, but rather we should be offering them comfort and prayers on their way into and out of the clinic. (Of course, this was under the pretense that the women in this circumstance were non-christians who don’t have knowledge of or a relationship with Jesus.)
In writing that blog post, I offended some people and then I let the enemy haunt me with that for way longer than I should have. It kept me from speaking up and saying anything because I wouldn’t want to offend anyone. But, to love my neighbor well, it may take offending someone with the Truth. The motive of sharing and bringing to light the truth of the Gospel is LOVE. And without love, we’re just clanging cymbals. (1 Cor. 13:1)
I am exhausted by Christians sitting quietly by and not saying anything about any of the controversial topics being shoved down our throats. Why aren’t we speaking up? Is it because we’re trying to be meek and quiet? (Lest we all forget that time Jesus flipped tables… but I digress.) We don’t want to offend someone? We’ve had abortions/same sex attractions/pornography addictions/racism/etc. in the church and so we let satan shame us into keeping our voices silent? We don’t want to lose friends? We would rather not step on the toes of the lost in an effort to make the gospel more “palatable”? This is just my first draft brainstorm list of what the heck we’re doing as a church. Certainly there’s loads more of why we’re doing what we’re [not] doing.
In a world that’s screaming that anything goes and everyone gets to take up space and whatever your truth is is right and acceptable, why don’t we Christians get to share our stories? Our ideas and our thoughts? The ACTUAL truth from Scripture in an effort to win lost souls to the kingdom before it’s too late? I don’t get it. So, in the spirit of sharing “our truth” and “taking up space,” here goes:
I believe life begins at conception. I believe God formed our inmost parts and wrote our days in His book before the world was even created. I believe all humans are made in the image of God and consequently are image bearers of God. I believe it is an affront to God as creator for a person to decide that God’s creation is not worthy of remaining alive. So, to summarize, I believe the Bible and I’m “pro birth.” (AND pro life, which I’ll get into shortly.) But I also believe the Bible says that we need to help the sojourner and the oppressed and the poor and the widow and the orphan. (see: all of the Old Testament law) Also, hungry people, thirsty people, strange people, sick people, naked people, people in jail. (Matt. 25:35-36) The church as a whole, sucks at this. There, I said it. We want to scream and shout how horrible a woman is for having an abortion, but we don’t want to help her if she chooses life. There is SO MUCH WORK to be done in this space. Obviously, I’m not going to solve those issues with one post in my little, tiny blog corner of the world wide interwebs. But I do have a story to tell. And so do you. Why don’t we start with just telling our stories?
Because I believe all the aforementioned things, my family and I realized we couldn’t be pro life and do nothing. So in 2018, we got licensed to become respite foster parents. (Foster parents who provide short term relief for foster families who need a break for various reasons.) Up to this point in 2018, I had only served the pro-life mission in a “minor” contribution by volunteering at a crisis pregnancy center when I was first married and had no kids yet. Fostering was a much bigger, harder commitment to serve in the pro life space. Through fostering, my husband and I ended up adopting our daughter in late 2019 and then adopting her twin baby brothers in late 2021. (Lots of opinions on that as well and not something I plan to tackle at this time and in this space.) Our experience with the “system” was eye opening for sure. Proximity tends to do that to us. It sheds light on places we maybe didn’t even pay attention to before. The system is all SO broken. The world is so dark and hard. But if each believer just does something, we can shed light on the dark world. I mean, OUR light. THE light. We’re supposed to be a light like a city on a hill. (Matt. 5:14) So why aren’t we shining? Do we need a new light bulb?? What’s the deal?!
Am I saying that every single Christian needs to foster and adopt? No. (Although I do believe that all Christians should be doing SOMETHING to help orphans and widows per the command in the Bible, but that could look like dropping off diapers or a meal to a foster family or a million other things that don’t necessarily mean foster or adoption. And it’s worth noting here, that there is LOTS of work to do to help support women in crisis pregnancy and to also provide birth control to prevent unwanted pregnancy, but that’s a debate for another day.) This is just MY pro-life story. I found a way to serve and go beyond yelling and screaming outside of a Planned Parenthood about pro-birth issues. Is this the only way? NO. God can use all of us in a million different ways and in a million different spaces to shine our light and to help save innocent lives in this politically charged space.
Now, what about Christians and people in the church who are pro-choice? This is where things start to get blurry. I am genuinely confused by how a professing Christian who has read the [entire] Bible could choose to promote and advocate for abortion. I’m not meaning that as judge-y and “holier than thou” as it sounds. I’m legitimately confused by this. We see in Psalm 139 that “my frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” If we believe that and we believe God is the creator and sustainer of life and that humans are image bearers of Christ, how are some of us proponents of ending the life of unborn image bearers? This is so confusing to me. Are these believers saying that women should have a choice about what happens to the mother’s body but not speaking up for the baby’s body also? Like, I just don’t get it. Is the mother’s life more valuable because she’s alive outside of a womb? And if it’s about “no uterus, no opinion” does this female baby (with a uterus) who is being aborted have a say in the matter or no? Shouldn’t we try and state her opinion on her behalf since she’s voiceless? And is it possible that we’ve made our stance and wanting to be “right,” into idolatry and placed it above worshiping God? There’s an old adage that I teach my kids that says, “Tell me what occupies your mind and I will tell you who your god is.” It goes along with the same idea that how you respond when something is taken away from will show you what place that thing/idea had in your life. I hope that we’re not putting ANYTHING above God in our lives.
I learned from a pastor once that we should expect unbelievers to behave like pagans. If someone doesn’t follow Christ, then of course they’re going to follow their own desires and not lay down their life daily and pick up their cross or honor God with their thoughts/words/actions. And I think we can all agree that the world is lost and broken and that satan [currently] rules over this earth. And Jesus said that the devil was a murderer from the beginning and that there is no truth in him. (John 8:44) Jesus also said, “but because I tell the truth, you do not believe Me…. He who is of God hears God’s words; therefore you do not hear, because you are not of God.” John 8: 45. We can’t expect women who don’t know God to make choices that reflect God’s character and commands. So the best advice I can offer to those of us who believe in the sanctity of life (in ALL stages and circumstances), is to trust God and believe He is who He says He is, let our light shine in darkness, change our proximity to difficult situations and get involved in practical ways, and freaking share the Gospel in order to save lost souls from an eternity separated from God.
So, in conclusion, I’ll go first and share the Gospel here: God LOVES you! No matter what sins you’ve committed He loves you and has made a way for you to be forgiven. God is holy and although He loves you, He is off limits to you unless you are holy and sinless. So He sent His Son, Jesus, to make a way for you to become holy and sinless. Jesus lived a perfect life, died on a cross and took OUR punishment for all of our past, present and future sins. Romans 10:9 tells us “that if you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved.” Upon that confession and repentance, you will receive the GIFT of the Holy Spirit and that’s when things really get lit 😉 The Spirit guides and directs you in the words you use, the choices you make, the causes you support. It is for freedom that Christ has SET US FREE! (Gal. 5:1)
We recently had a beautiful room renovation happen to our main bedroom. It was long overdue, to be honest. We’ve lived in our home for nine years and up until now, we had never done a single thing to our bedroom – no paint, no curtains, not much cleaning, I confess, and it was becoming the “catch all” room for any of the kids’ junk that didn’t have a home or paperwork that needed to be filed or toys that went to time out; our room was where everything came to die and collect dust and receive curses from me as I went to bed (and woke up) in a space that was for sure not life giving, but rather quite the opposite.
The circumstances of how the renovation took place were quite exciting and will be airing this summer on HGTV, actually! (I’ll write more about that experience later.) Going on this fun, albeit challenging, adventure was the only way for us to bite the bullet and get our house [read: bedroom] in order. So we went for it! We moved out for nearly three weeks with friends, handed the keys over to trusted professionals and then, when the time was right, we had the “Big Reveal” and we got to come HOME and see the beautiful space that had been prepared for us. And beautiful it was! – however, the reveal left me even more homesick.
I couldn’t help but see all these weeks of hard work and this massive team of professionals who worked so diligently on our home and think only of my home in heaven. It made me remember how right now, literally this minute, Jesus is preparing a place for us! We’re in the “move out” phase of the reno of life, if you will. We’ve been displaced earth side at this time, but our home (if you know Jesus as your Savior) is in HEAVEN. And as much fun as you can make it being “displaced” – staying with friends, eating out, making the best of the displacement – you should know and feel deep down in your soul that this world is NOT your home. We should be eagerly anticipating the Big Reveal! I, for one, cannot wait for THAT reveal day! I anticipate it and am so eager for it! I’m so homesick for heaven and to see Jesus and what it is He’s been working on for us this whole time!
The day of our bedroom reveal, when I experienced such great joy and happiness at the beauty and splendor of the transformation and pure amazement at how gifted the designer and her team were, I also had the pleasure of observing the pride and joy of their hard work. It was smiles all around that day! And I picture how proud and joyful Jesus will be to get to reveal to us our eternal home that He has prepared for us.
Jesus said, “In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also.” John 14 : 2-3
There’s an old southern gospel song whose lyrics say, “I’ve got a mansion, just over the hilltop. In that bright land where, we’ll never grow old. And some day yonder, we will never more wander, but walk on streets that are purest gold.” (https://youtu.be/YfZ3qyYnzJ0) I love southern gospel music. I grew up on it, in fact. And the thing I love about what most southern gospel music has to offer is that it’s usually directing your eyes to heaven, to the future coming of Jesus and to the hope that can be found in trusting that He will be back to rescue His church. (Acts 1:11) When I listen to songs like “Mansion Over the Hilltop”, “What a Beautiful Day (for the Lord to Come Again)”, “Going Up Yonder”, “I’ve Never Been This Homesick Before”…these songs all remind me that this world is not my home, I have a Savior eagerly awaiting “Reveal Day” that loves me and wants to show me the beauty and splendor of what He has created and that the home there, in heaven, will last for eternity. It will not faint or grow old and weary. It won’t collect dust or need a coat of touch up paint over time.
As beautiful and functional as my bedroom is now, and as much as I love it, it’s still just “stuff.” My treasure is not found in a room, or in a TV show, or in any thing that will be burned up and thrown into the fire. (2 Peter 3:10) I’m trying with all that I have to only store up for myself treasures that are in heaven, where moth and rust don’t destroy. (Matthew 6:19-21) Are you living that way, friend? Are your eyes on eternity? Or on the temporal? We’re running out of time FAST. Now is the time to set your eyes on Jesus. Maybe it’s just resetting your priorities. Maybe it’s a total revamp of where your treasure is. Or maybe you don’t know Jesus at all and I seem like some crazy lady (#hereforit ;)). Whether your final destination is in heaven in a mansion that Jesus is preparing for you, or if the opposite is true and eternal separation from God is where you’re headed, this world is temporal and not your home. This world is a tiny vapor, a mist in all of eternity, and a time for you to hear the Good News of a Savior who loved you, died for you in order to rescue you and is a killer designer and is literally creating a place for you in heaven if you would accept Him and His free gift of salvation.
These are some crazy times we’re living in, amiright?! If nothing else, can the world just agree that we’re all crazy and it’s not a contest? No matter where we each land on today’s [feisty] hot topics like masks v. naked faces, vax v. no vax, freedom to choose v. mandate everything – there’s many a topic we could choose from to get divisive about. Christians and non-believers alike are fired UP about any and all of the topics and which is right, who is dumb, how it should be… and it seems like no one in any of the camps is having stage fright speaking their mind and reminding you that if you don’t agree with their stance, you are literally THE worst.
I wonder, though, what would happen if we Christians were this passionate about reminding people that there’s actually an eternal life we should all be worrying about more than this current one we find ourselves in. The Bible tells us like it is – this life is but a vapor. It is a mist, that appears and then is gone. And once it vanishes, it’s on to the actual life that this quick, dress rehearsal one was preparing us for. “…What is your life? For you are a mist that appears for a little time and then vanishes.” James 4:14
Insert spoiler alert here – we are all terminal. We will all die. Every single person you meet on this earth will spend eternity somewhere. Either in heaven or in hell. Why aren’t we screaming it from the rooftops?! Why isn’t that on the newsfeed blowing up your phone? Because the enemy is real and his tactic is to steal, kill and destroy… #oldnews. He’s stealing your peace and killing your hope and destroying your relationships. And we’re just standing around letting him. Well, I, for one, am done.
If you are a Christian and you believe the Bible, we are instructed (repeatedly) not to fear. Should we walk around and lick doorknobs and be reckless? No. But we should be so focused on making disciples and sharing the Good News (aka the GOSPEL) that clickbait headlines about all the horrible ways we’re going to either die or inadvertently murder everyone we know and love would be irrelevant to us. We are supposed to be living on mission! If we truly love our neighbors, wouldn’t we be sharing Jesus and letting our lost friends know there’s a way to ETERNAL LIFE through Jesus Christ rather than making an idol out of this vapor mist life?!
The situation is this – God is holy. We are not holy. We are all sinners condemned to die. Even if you’re a “good person” and your “family is Christian” and you “go to church” and you “are kind to people #beakindhuman”. The Bible says there is no one good, no not one – “And Jesus said to him, ‘Why do you call me good? No one is good except God alone.’” Luke 18:19
But God, in His infinite love and provision, sent His son Jesus to pay for our sins by dying on a cross. Your sins will all be paid for – either by you in hell, or by what Jesus did on the cross. He offers up a free gift to anyone willing to admit they are a sinner and repent and come to Him. Jesus overcame death – after He died on the cross, He came back to life three days later and conquered death, making a way for those of us who accept His gift to live eternally. And not only that, but to have the peace that only He provides as we live out our days on this earth with His Spirit indwelling us.. “Your eyes have seen my unformed substance; and in Your book were all written the days that were appointed for me, when as yet there was not one of them….” Psalm 139:16. God has numbered our days before we were even born and we can rest and trust Him. We can trust that the God who created the entire universe and numbered every person’s days before He created them, is trustworthy and true. Let’s all decide to focus on our mission here on this planet – to love God and love others, to go and make disciples and to share the Good News! .
Our family has six kids. S*I*X kids. That’s a lot of bodies and a lot of logistics of coordinating a lot of life. I thought a blog post would be a great way to share some of our practical, daily tips and tricks – it may help you, or it may just satisfy a nosy itch you have wondering how on earth families the size of mine are able to keep life rolling smoothly [or at all]. So, let’s begin…..
Feeding eight humans every single day, three times a day is a full time job it feels like! Now, to be fair, Hayden doesn’t eat food by mouth, so we’ll exclude him from this particular topic. [He uses a G tube and is on a continuous 24/7 drip of formula from a feeding pump. But, don’t feel sorry for him – he hates food and thinks it’s gross to eat, so he’s fine, yall!]
I start each week with a full meal plan. I sit down usually on Saturday or super early on Sunday morning before church and plan out the week’s meals. This includes dinners, lunches, breakfasts and snacks. It’s summer right now, so we’re all home all day long and we eat every single meal together. (During the school year, my kids bring their lunch to school except for one day per week when they’re allowed to purchase a school lunch.) Our family has some set traditions when it comes to food which include Taco Tuesday (religiously!) and Pizza Friday. Knowing these two meals are set each week, really helps get the ball rolling when it comes time to meal plan dinners for the week. Already having two days filled in is encouraging. We also like to save Thursday nights for “Leftover Night” usually, although, we’re finding less and less leftovers available from each night’s meal (#growingBOYS!) so we are in the process of learning to make more servings at the other weeknight dinners, or just adding in another quick, easy meal on Thursday nights. Historically, my Bible study group (D Group) meets on Thursday nights so it’s nice to know it’s just leftovers for everyone and I don’t have to stress while I’m getting out the door to Bible study.
For breakfasts, I try and plan at least one breakfast casserole for the week and then have other meal prepped high protein options ready for a quick grab during the busy weekday mornings. I like chicken sausage links and turkey bacon as good meat options and have a few hard boiled eggs meal prepped and ready for breakfast or snacks. During the summer, I try to stay as healthy as possible for lunch time meals. Luckily, my kids like salmon and other types of fish, so I try to cook some early in the week that we eat on for a few days throughout the week. In an effort to be overall a bit healthier, I try to get ingredients to make snack options from a “30 Healthy Snack Idea” list we got from a nutritionist at one of the clinics we go to. I keep the snack list posted on the refrigerator so that the ideas are always visible to the kids so when snack time hits (at 10am and 2pm) they have options and don’t have to rely on me to get creative for them.
Once I’ve established that week’s menu, I start an Instacart order on the app on my phone or via computer (depending on how crazy the environment is that I’m in at the time). I add all the ingredients I need for our nightly meals, lunches, breakfasts, snacks and random stuff we may need and put it into multiple Instacart orders if need be. I shop mainly from Aldi because you can’t beat the savings!!! Seriously! (I used to shop there in real life, but then I had four kids and I was no longer in a place to PHYSICALLY ENTER a store ha!) I also do an order from Costco usually bi-weekly for things like peanut butter, Skinny Pop, Topo Chicos, paper plates, etc. I’ll also have a monthly or so order from Sprouts for various supplements and probiotics that we take. Then, I set my order/s to be delivered that weekend – either that Saturday or on Sunday after church. [If you don’t know what Instacart is or haven’t ever tried it, you are for sure missing out!! A shopper will shop for you at a wide variety of stores in your area and with a minimum $35 order at a store, they will shop and bring your stuff to you typically within two hours or less. There is a fee for this [incredibly worth it] service and I opt to pay $100 for the year – much like Amazon Prime. To give it a try, use this link and get $10 off:https://inst.cr/t/MDJSN0wwQkli]
We cook all of our meals 95% of the time and if we do purchase food from a restaurant, it’s just take out and we eat at home. We don’t tend to take the herd to a restaurant as that’s not conducive to eating in this current stage of life we’re in with two one year olds and a teenager in a wheel chair who doesn’t even eat food. Which, honestly, I don’t mind eating at home because it’s healthier and cheaper than anything a restaurant could offer us.
I mentioned earlier that once I’ve created my weekly meal plan, I write it on a white board in our pantry/laundry room/”home base” station. I write it for my own knowledge, but I also do it so the kids can see what we’re eating on what days and they are aware of what to expect. It also cuts out unnecessary questions and nagging about “What’s for dinner?” and “I don’t like ________.” You don’t have to like everything; but you do know what the options will be for the evening meal. I would say overall, the kids really don’t complain and I try to make meals everyone enjoys, although every night might not be their Most Favorite Meal of All Time – and that’s ok. One thing we have done as well, was to create meals together and I let the kids name the creation. For example, one time I had some chicken breasts I cut in to strips and just baked with some salt and pepper and some Rancher seasoning from Wildtree. It tasted pretty good but wasn’t necessarily in the “Most Favorite Meal of All Time Hall of Fame” or anything. But that night, I asked the kids what we should call our creation and collectively they came up with, “Naked Chicken Deluxe, Yo!” And it stuck! It was a fun name and moved the lame baked chicken up a few notches on the recipe rotation totem pole. By including them in the process, they had a little skin in the game and now they love to help meal plan and request “Naked Chicken Deluxe, Yo!”
Keeping everyone’s schedules organized can sometimes feel like my second full time job! Each week’s success, for us, hinges on something we’ve done for years – a family meeting! We typically do these on Sunday afternoons and all the kids gather around with us and we look at every family member’s commitments for the week. Big commitments for us each week are things like Hayden’s doctor appointments, visits from CPS/CASA/Buckner for the foster kiddos, in office work meetings for Ryan, and sports practices (when in season) for the other kids. Getting everyone on the same page for the week helps EVERYONE, not just Ryan and me. Some of our kids are a little more high anxiety, so it helps them to know where everyone will be and what to expect in the upcoming week.
Any meetings or appointments for kids are written on our family’s calendar in our Family Hub Station. This way, it’s posted for everyone to see. (This even includes Hayden’s nurses who use that same laundry/pantry area to prepare Hayden’s meds and wash his medical equipment. I also keep posted in the “nurse’s station” of the laundry/pantry a hard copy of the nursing schedule which helps alleviate everyone relying on me to know and report the weekly schedule for nursing staff. If it’s posted, it’s a resource for everyone and it takes pressure off of me.) I try to keep the big, dry erase family calendar color coded as much as possible, but the most important thing is just getting the information down. This helps us all tremendously to not feel surprised by our day and to feel a little more sense of calm as we begin each morning.
A practical organization tip I learned years ago from another mom of multiple kids, was implementing something called a “Water Basket.” Rather than having a million cups all over the house, we each have one refillable water cup (I mean, we own more, but we each only use one at a time.) So whether that is a Tervis cup, a Gatorade squeeze bottle, a personalized sports cup, a sippy cup, etc., we each just use one at a time and keep them in our “Water Basket.” We have a Berkey water filter that is located on our dryer and we LOVE it! It filters out all kinds of nasty stuff from our water, and we each just refill our cup as needed, take our drink and ideally, place it back in the Water Basket to grab for the next drink. This helps out tons when the kids are asking, “Where’s my water??” I simply say, “Did you check the Water Basket?” This cute, brown wicker basket is our family’s landing zone for hydration.
Another way we keep order in what could be chaos is by having color coded bath towels for the kids. Each child has a set of three towels, but all three towels are the same color. Each child has THEIR colored towel and it’s their responsibility to use it and hang it up after their shower each night. (We don’t wash towels after each use – sorry if you think that’s gross, but we don’t. You can get a good couple of uses out of one towel if you hang it up to dry, which is what we ask of the kids.) Do they do this right every time? No… not always. BUT, when I go into the bathroom and see a yellow towel on the ground, I know exactly which kid is responsible for it.
Speaking of showering and getting eight people ready daily, we also have mason jars for each kid that has their toothbrush and preferred toothpaste in it as well as floss or floss sticks. This keeps their things organized and no one gets confused over whose is whose. (Hayden does have his own wheel chair accessible bathroom so his operation runs a bit differently….and since our remodel is now complete, we have a bathroom dedicated to the other five kids and guests, as well as mine and Ryan’s bathroom that no child is allowed in – we shared long enough! ha!!)
As part of our renovation, we wanted to find a way to incorporate a “mud room” of sorts. We have a one story, 2,200 square foot home that we were able to creatively turn in to a five bedroom, three bath home with loads of storage and a sink in the laundry room. We got really good at using every square inch of space we could find and that’s how we created our “mud room” wall in our entry way. This wall, has six cabinets, one for each child’s backpack and sports bag/equipment if they’re playing a sport that season. (More on sports in a minute.) The wall also has a bench and cubbies for shoes as well as hooks for jackets in winter and purses for myself and guests. I love this so much and its functionality has been a HUGE lifesaver for me. With the backpacks inside the cabinets, I don’t have to see clutter everywhere, but rather it is contained behind a cabinet door. Again, when the kids go looking for their shoes or jackets, I simply direct them to the shoe cubby or their cabinet and they are able to solve their own problem and locate their belongings.
A few years ago, Ryan and I made a decision on where we wanted to put our focus when it came to family. For us, building a strong family unit who knows, loves and serves the Lord together is THE most important thing. Defining what we wanted for our family helped us to determine what we did not want for our family. Family dinners together and quality time for talking and teaching are our priority. Knowing our end game goal, helped us to inform what our day to day life would look like. One of the parameters for our family, is that each child is welcome to play one sport per year. We spent many years playing all the sports and dragging babies and the disabled across all kinds of fields and to practices and games and we were 100% miserable. We don’t want our kids to miss out completely on sports just because we have a large, unique family dynamic, so we put healthy boundaries around recreational sports. And here I would offer a wise quote I love that says, “It’s ok to live a life others do not understand.” And it is ok. You do not have to look like every other family in your neighborhood or in your extended family or like your coworker’s family. In fact, I hope you don’t. I just want my family to look like Jesus and so for us, that means limiting the time we spend on practice fields and fighting on Saturday mornings to get to the ball field to sweat together in misery. But my family is not your family – so I honor and respect whatever it is you choose to spend your time on. (**Note on this: we do let our kids do music lessons and we are more open to activities that don’t require weekend commitments – think Taekwondo and dance lessons. We’re not total sticklers for no fun; it’s just we can’t afford to commit every weekend to a ball field, especially when weekend nurses for Hayden are hard to come by.)
In practical terms, to get all these humans showered and in bed on time, we have stick to a pretty scheduled and regimented bed time routine. **Disclaimer: I know Ryan and I are more type A than the average bear… and we’re fine with that. It works for us. Feel free to judge us. We do not care. We know who we are. ;)** We generally starts baths for the babies around 7:00pm and then it just progresses from there to the older kids. One thing we do to prevent arguments between two of the kids who consistently were arguing about who would shower first, is that we created a schedule for who showers first and posted it in the bathroom for all the world to see. (I did this also for these two as they’re roommates and would fight nightly about who should shut the door and turn off the light. are. you. kidding. me. right. now. So to put a stop to one more senseless fight, I posted a light/door schedule and taped it on the wall. THE END.) Now that the shower schedule is posted, everyone knows who should be where and when. While one person showers, the other person goes and takes their nightly vitamins and then they switch tasks.
If I haven’t lost you yet, I’m about to. This is the part where you’ll want to have me committed. Brace yourself. In an effort to be a good steward of each minute of the 24 hour day I’ve been given, and in order start my day off focused and ready to tackle whatever the day may bring, I work out at 5:30am! I wake up at 5am, throw on the workout clothes I laid out the night before and head to either Yoga or Pure Barre. (I’m in a weird overlapping time when I go to both and am trying to determine which activity I love the most.) This has been SO helpful to my mental health and overall attitude about the day. It gives me a chance to get up before the world, to pray out loud on the drive to the studio and give my day to the Lord, and then to accomplish something fully without being interrupted and to get to move my body before [all of] my family is even awake! I never used to be a morning person, but now that I am, I really enjoy it! My body and mental health are worth the investment. And, having to get up so early means I get to bed early as well. Which is better for me anyway! Confession: I used to watch Netflix and eat Skinny Pop and drink a glass of wine and go to bed way too late. But now, I only have wine on Friday nights or the weekend, and I get to bed at a decent hour every night (in fact, I put my phone to bed at 8:30pm and it goes into Do Not Disturb mode so that I set the tone for winding down.)
As part of our mission of creating a close, tight knit family, Ryan and I decided to start “family traditions.” These seem like minor things, but their OUR FAMILY’S things so they’re big things to us. Some of the simple things we do are traditions like Taco Tuesday and Pizza and Game Night Fridays. These are stable, routine things that we hope make our kids feel secure and connected to our family unit. We eat dinner every night anyway, why not pick one night and just make it a “tradition.” We try to have “movie night” on Saturday nights although we’re not very consistent in that one. Whatever tradition you create doesn’t have to be perfect – it’s ok if it’s not perfect or done with 100% consistency. Just being together and creating memories as a family is the goal here.
Another tradition we do that the kids LOVE is “Fancy Dinner.” We had all this wedding china sitting in drawers and in cabinets and for what? We rarely used it and it just sat collecting dust. So one day we decided to dust it off and let the kids use it as we had Fancy Dinner. They flipping LOVE IT! They feel fancy and honored that they get to use our china. We do this once a month and even if the meal is lame, it still feels fancy because of the plate – I mean talk about upsell!
Since so many social interactions in life are centered around food, we include Hayden in our family dinners each night even though he doesn’t eat food by mouth. We use the time each night, to check in with each other and each family member shares a “Sunshine” and “Cloud” from the day which is their high and low of the day. We also keep a devotional book on the Lazy Susan on the table and we are slowly reading through it together. We added, recently, a book called “What If” and it offers hypothetical situations and each person gets to answer with how they would respond. Obviously we don’t have to use these guided materials, but it’s nice to have some structure as we range from one year olds (clearly non verbal right now HA!) to a teenager and everywhere in between so having something to put us all on the same page is a nice tool to utilize. The main point of all of this is to just sit down with your family and BE TOGETHER. I grew up in a home where this was not a priority and not a routine and I remember each meal I had at a friend’s house where we did sit down together and talk and leisurely enjoy dinner and discussion and I treasured those times and conversations greatly. That is part of our hope in doing our nightly dinners – that our kids will be inspired to converse together, to think and discuss ideas and various topics and to just enjoy being together and that when they’re outside of our home or when they have their own families they will continue in these family traditions.
Now that I’ve given all of our family secrets away 😉 our final one is this. We ultimately just want our kids to know we love them and although we are structured in the way we run things for the sake of the family unit, we are so thankful to have this family we have been given to lead and grow. To us, there is freedom in structure. Which feels like how our heavenly Father leads and grows us as well. We are free in Him and the structure of His word. But this family, and God’s family, isn’t just about rules and religion; it’s about relationship. Our prayer is that in listening to our kids now and in opening the conversations up for topics that might difficult, they will always feel welcome to come to us for advice in the future when the topics are much heavier than who should shower first or whose turn it is to turn off the lights. 😉
“Above all, love each other deeply, because love covers a multitude of sins.” 1 Peter 4:8
Fourteen Easter seasons ago Ryan and I were processing the information that had just been handed down to us from a perinatologist in Austin, Texas informing us that our son had spina bifida. Finding out that something is wrong with your child is completely overwhelming. I’ve said before in that moment, there was really no going back to life before hearing that diagnosis. From the way I saw it, there were three different endings; all of them difficult.. If we chose to terminate, which was offered to us as a “treatment”, I’m not sure how you heal from that. If our baby ended up dying in utero or at birth, I’m not sure how you heal from that. Or, if we chose to educate ourselves on his diagnosis and then try and give him the best chance at life, I’m not sure how you heal from that. There is no handbook for this.
This [Holy] week, we are approaching Easter weekend, 14 years after receiving our original diagnosis and Hayden is currently inpatient in a pediatric ICU dealing with multiple acute diagnoses. (And this, coming off of a full week of all eight of our family members taking a turn with a brutal stomach bug.) We were already living on little to no sleep and then Hayden‘s stomach bug transitioned into respiratory issues, and pneumonia and a virus and also a UTI. He had been feeling pretty miserable for quite a few days and since we know when to fold ’em, we took him to the ER for admission into PICU late last week..
We’re writing our own handbook as each day and month and year passes by. I’m constantly being asked questions about Hayden‘s care or Hayden‘s needs. Every.single.month someone from Medicaid calls me and asks me what appointments Hayden has been to, if there have been changes in his care, if he has any new diagnoses. None of these are things that I chose nor would I pick to be doing. But, it is the reality of trying our best to give Hayden the best life possible. And I have to say, I’m pretty dang proud of the life he is living.
Not only has he taught me countless lessons about life and made me a braver, more confident caregiver and advocate, but he has put a spotlight on our family. And now that we’re in plain view to the world, we will to point the world to Jesus. I will never stop saying that I hope and pray when people look at our family and everything that we’re doing and the chaos of it all, that they only see our JOY and I want more than anything for them to know that the source of that joy is JESUS. What better time to remind the world than with Easter weekend approaching in a few days?
Fourteen years ago on Easter weekend, my world was falling apart. But around 2000 and so years ago on Passover weekend, Jesus‘ world was falling apart and yet also falling into place. It is because of Easter weekend that our family has the hope that we have. Because, you see on Easter weekend after He was murdered on mine and your behalf, Jesus was buried in a borrowed tomb, but only for three days. He was resurrected on the third day and overcame death! And in so doing, he has given my family, and your family, the chance to also overcome death. Because of the gift and good news of the gospel (i.e. Jesus died for our sins and rose again and now we have a free gift for the taking), we have hope in eternity. So, when I watch my son lay in his hospital bed feeling miserable or I see him struggle in his wheelchair because of his inability to walk, or when I see his Autism diagnosis get in the way of he and his peers interacting, I do feel grief for what is lost on this earth – but beyond that I have joy. Because I know that no matter what happens on this planet, because Hayden has accepted the free gift of salvation that Jesus offered to him, Hayden will have eternal life in heaven and will be restored one day. I know that with 1000% certainty. I just wish that everyone else would come to know that, too. Look at this child, look at our family and see that there is something bigger than yourself and this world, and that there is a source of life and hope and joy.
So coming into this Easter weekend, I am thankful. I am thankful for all the years I’ve had with Hayden, I am thankful for the platform to share Jesus. I am thankful that God can turn ashes into beauty. I am thankful that 14 Easters ago my world and I knew it was ending. Because when my world ended, my life was actually able to begin. I pray that our family will bless you and encourage you and have you seeking truth. For me, it took an earth shattering event to wake me up to how wonderful God‘s plan is. And if sharing our truth and our life with the world brings one more person into communion with God, then every single tear that I’ve cried over the span of 14 years was absolutely worth it.
The only thing that matters, is you knowing Jesus. Knowing His love for you and the sacrifice He made for you. There is no time like the present. I can tell you firsthand, life is short. Don’t put off another day coming to know the Lord. And not just so that you get to go to heaven. Yes, that’s great.I hope we get to be neighbors and hang out together for eternity. But please don’t just be after Jesus for His stuff. Be after Jesus for Jesus. He makes each day worth living and coming to know Him more and more each day has been the greatest gift of my life.
“If you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved.” Romans 10:9
My D Group (Discipleship Group aka Bible Study) is studying Revelation right now. It’s intense. This is by far the hardest study I’ve participated in and I’ve done many studies on Revelation and end time events before. This one is stretching me (and our whole group) in ways I wasn’t really prepared for. And thankfully, end time events is an “open handed” issue – meaning salvation doesn’t depend on nailing the order of these events or knowing if they’re literal or imagery. But it’s still hard. And sometimes I want to just quit because it’s hard. And honestly, I’m a lazy American who sometimes just wants to quit when things are difficult. But I’m not going to.
I’m about 8 weeks in to this study and I’ve delved deep in all kinds of wrath and judgment (all justified and totally due), but do you know what the saddest part has been to me? There’s one line in the passage we covered last week that states, “They did not repent of their deeds.” Rev. 16:11 God is pouring out His wrath which most people will say is so mean and terrible; but it’s actually God’s MERCY. He’s pouring out wrath in Revelation in order to BRING PEOPLE TO HIM. [Depending on interpretation,] this is the part of the world’s story where people left on earth (after the church is raptured out) who have not accepted Christ as their savior are being giving their last chances to recognize who the God of the universe is and to repent and turn to Him. But. They. Won’t. It’s unbelievable to me. They still choose to deny Him. They still choose their own pride and self.
It seems here in America, for sure, we’re so prideful and bratty and spoiled, that we no longer honor God who sits on a throne. HE sits on the throne. We worship HIM. We are not on a throne. We are not equal to God. This place (this planet, this universe, the heavenly realms, all of it) is HIS. We are HIS. Not the other way around. If Jesus is Lord of your life, He’s in the driver’s seat of your life. He’s not in the trunk. He’s not in the backseat. He’s not in the passenger seat. He’s either in the driver’s seat, or He’s not in the car at all. But it feels like oftentimes, we want to drive our car around with a mannequin up front behind the wheel while we are actually operating the car from the passenger seat “mailman style.” We want everyone around us (when it’s convenient, of course) to assume that’s Jesus leading us and driving our lives, meanwhile we won’t let go of the dang steering wheel!
Scripture commands us to DENY ourselves. We’re to take up our cross and follow HIM. He doesn’t follow us and our lead; we’re to follow HIM. When we assume we have the authority to assign gender pronouns; when we assume we have the authority to decide which lives are worth keeping alive and which aren’t; when we assume we have the authority to define marriage as anything we want, we are acting as gods and that is idolatry. The entire point of the Christian walk is that WE would decrease so HE would increase. That is dying to self. It’s denying what YOU want and only living for what HE wants. “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will find it.” Matthew 16:24-25 This idea absolutely goes against every thing that America and the current culture is feeding us. But it’s the only thing true. It’s the only thing that will last.
Pride is an incredible thing. I wonder if we understand that we are sinners. We are not good. There is no one good but the FATHER (God). Jesus even said, “Why do you call me good? No one is good except God alone.” Mark 10:18. It seems in this current day and age, everyone wants to assume they’re good, though. That they’re not *that* bad – I mean look at So And So, now they’re bad! But that’s not true – even Jesus declares that He’s not good, only God is good. Being “good” gets you nowhere fast.
Good won’t get you to heaven. And neither will religion. Only CHRIST alone, through FAITH alone gets you to heaven. And you don’t just get heaven – YOU GET CHRIST! Coming to faith in Jesus will not give you health and wealth; that is a LIE. Jesus tells a person interested in following Him in Matthew 8:20, “Foxes have dens and birds have nests, but the Son of Man has no place to lay his head.” Any earthly possessions we have are His anyway and to be used for His glory, not our own.
Some people will hate what I’m saying. Maybe they’ll hate me too for saying it. But that’s ok; Jesus gave me a heads up for when that happens. “If the world hates you, keep in mind that it hated me [Jesus} first. If you belonged to the world, it would love you as its own. As it is, you do not belong to the world, but I have chosen you out of the world. That is why the world hates you.” John 15:18-19 The only reason I say any of this is out of love for my fellow man and to follow Jesus’ last command to His followers before He left this earth. “Therefore go and make disciples of all nations… teaching them to obey everything I have commanded you.” Matthew 28:19 I usually try to beat around the bush and be as P. C. as possible when presenting the gospel, but if 2020 has taught us anything, it’s that life is short and you truly never know what’s around the corner.
I know that sometimes “Christianese” (this using Christian language that someone outside the church may not recognize) can be a bit of an issue sometimes. What even is the “gospel” and what do you mean when you say that, Johnna? Gospel means GOOD NEWS. Here’s the good news, guys! Jesus! He’s the good news! Here’s the low down:
—-Humans are sinners. We all sin. We live in a fallen world full of sin and heartache and brokenness, and because of that we are separated from God. “For all have sinned and fall short of the glory of God.” Romans 3:23 This is where the pride thing can become a hang up. We don’t want to admit that we’re a sinner… we’re “good people” remember? We’ve never murdered anyone or cheated on our spouse. We’re “good, duh!” But that’s not true – Scripture tells us we’ve all sinned. Can you admit that and accept that as truth about yourself?
—-Jesus is the Son of God sent to this earth to die on a cross to make recompense for mankind’s sin. Jesus Christ was the ultimate sacrificial lamb (fulfilling Old Testament Law, by the way) whose blood was shed to cover the sin of all mankind who would accept Him. “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God – not by works, so that no one can boast.” Ephesians 2:8-9 Not by WORKS. Just Jesus. This is why I say religion won’t save you. Church won’t save you. Your pastor won’t save you. Jesus saves you. Christ alone.
—-So then what? If you can admit you’re a sinner and that you need a savior, and you believe that savior is Jesus alone and you are willing to accept His free gift, then you commit your life to Christ and ask Him to become Lord of your life. This would be the first step of a lifetime of growing and learning and being sanctified and walking with Jesus. But the first step is always the most important one. Romans 10:9 says, “If you declare with your mouth, ‘Jesus is Lord,’ and believe in your heart that God raised him from the dead, you will be saved.” So this might look like a prayer that asks God for help and welcomes Jesus to become Lord of your life.
Depending on how familiar you are with scripture this may [theologically] be clear as mud – but it’s a lifelong process of studying Scripture and falling more and more in love with Jesus who loves you SO much. So, so much. When everything else fades away – your savings account, your friends, your health – Jesus will still be there and He will still be for you and with you.
If there is a question you have that I could answer or if I could pray for you or encourage you in any way, please reach out! That’s not just something I’m saying so I have a cute conclusion here, it’s a genuine offer. I am available to you whether you know me or not, and there’s nothing more important to me than helping you work toward eternity with Jesus and having a life here on earth worth living because of the hope that awaits us in heaven.
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
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.
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.