where the head & heart meet


An untimely death always has the power to grip & paralyze people but eventually turn us all to conversation. It goes without saying that Robin Williams’ death was untimely. He was an American cinematic icon. I could go on, but if I need to list his accolades then you’ve been living under a rock.

Now that the conversation has gone to depression, it makes me ponder where we’ve been. When I say “we” I mean people like myself. Christians. The church. The hands & feet of Jesus.

Why has there been such a stigma associated with depression or anything remotely related to the brain or emotions? If a soul shows up in a wheelchair, we have no problem praying for our brother or sister in Christ. We embrace their challenges & accept them at face value…. but if they share that they’ve been battling a darker outlook on life… or worse? Well, then…. you just need to pray harder. The joy of the Lord will shine upon you IF you pray hard enough. IF you connect more. IF you read more.

That might be true. Might.

But what if we’re wrong? What if that theory doesn’t fit every single person? What if we’re losing our church body to the world because we’re afraid of what we don’t know?

I don’t think I’ve ever dealt with the magnitude of depression that Mr Williams did. I pray that I never do, but you know what else I do to combat this? I see a psychologist. It’s true. There. I said it.

THANK GOD for the “other Drs.”

I was diagnosed with depression & PTSD a couple of months ago. If you’re shocked, you cannot imagine how stunned I was. The Dr was not joking either. I only say that because I actually thought he was. I mean, PTSD is a term I’m vaguely familiar with. I live next to the largest air force base… in the center of air force, army, & navy bases…. military are all around, so sadly, the term was not new to me.

But…. I’ve never been to war. I’ve never even been to basic training. I’ve never even worn anything camouflaged. Ok, maybe a hat, but I’m super Southern. Oh, but apparently I have been traumatized. Certain events…certain traumatic events qualify you to be a part of this not-so-desirous group. And honestly…. it’s not nearly as noble & honorable as when one receives this diagnosis for a job still well-done out serving our country faithfully. You feel shamed, actually. Like, you don’t even deserve this title.

When I (very) briefly shared with our pastor a few of the things going on in my life, he was quick to send me directly to a psychologist whom they have on staff 2x/ month in our church. Ummm… embarrassing, you say? Yes. Exactly. When you realize your case is too big for your pastor….yes, definitely. Our pastor didn’t tell me what I had or had not done wrong, he didn’t suggest me to pray harder or more effectively, or to even just leave our church building… he knew he wasn’t equipped to handle this. He looked & me mercifully, humbly, prayed with me… but passed me on.

But what about the Holy Spirit, you say? Couldn’t He advise him in how to deal with me? Sure. In a third world country, or a small church without the resources, etc…. It can happen that way. But… we’ve been gifted with this amazingly talented man & he just so happens to have a few more letters after his name. And guess what?? He still totally relies on the Holy Spirit & His Word.

I’m a work in progress. I have great faith in THIS.  So, this really isn’t about me or where I am, but I’m wondering if we’ve been looking at it all wrong. Maybe not all of us. Some of us get it. But woe to the finger-pointers that don’t. It’s a dark day for the person rejected & kicked when they’re already down….way down.

So, we all know not to judge right? I mean, there’s a verse completely over-quoted… but really… maybe we should judge just a bit?? Not out of fear, but in love. Let’s judge our own limitations. Let’s take a hard look at what we do & do not know. Let’s NOT give advice when the Holy Spirit has not prompted us to. Let’s call in the elders, the educated, the wisdom-filled, truth sayers…. and let’s intervene in a non-conventional, life-changing way. Let’s meet them where they are. Accept them for who they are & where they are at this moment in their life. Let’s NOT set out a path for them. Let’s allow Christ & His lamp shine the path for them.

Let’s not be afraid  of what we don’t know. Let’s turn to others, Jesus loving others… who can fill in those gaps.

 

 

 

 

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Party of 1


Easy like Sunday morning. Always. Easy peasy, thank you Lionel. As I shove my kids into our truck with stomachs rumbling, wrinkled clothes, & probably teeth unbrushed…. I’m determined to plop down in an uncomfortable green chair & receive my blessing.

My favorite associate pastor is preaching. I confess. I only like the senior pastor. This guy is great, but if writing a blog during his preaching, teaching, story-telling is any indication of my actual feelings? Well, then…. I’m simply too southern & too saved to go there. I’ll certainly fill you in off the blog. ;)

So my mind wanders. I try to stop it but I can’t at this point. I gave him a solid hour. I’m thinking this is most assuredly a blessing in disguise. I mean, free therapy, right???

I’ve written about this before…. but when I was young… very young, around 8 or so, my God-fearing parentals decided to check out of organized religion & assemble at their own home Sunday mornings & Wednesday evenings. I don’t think I could quite grasp what was evolving at first but the reality sunk in & I was left with no words of explanation. I got it though. I missed our chaotic routine; similar to how it started with my own children this morning….. Crazy but ours. So, I had my folks keep bringing me to church. As regular as I could from age 8 ish to 17….. I went mostly alone. Sure, I had aunts, uncles, cousins, friends from there….. But I felt alone. My brother went off & on but left for college when I was in middle school. Perhaps because of his age he took the abandonment harder. He turned down a much different path than I would take. (Fast forward…. He’s well on track now). But…. There were painful words exchanged & well…. I learned early on to not go to him for anything spiritually related.
So, I sat alone. Every Sunday. Every Wednesday. Looking back, I wasn’t really alone. Sweet extended family, elders of the church, friends…. But my core…. My immediates…. They were MIA. The feeling I had so often is truly without words.

So…. Without words is where I find myself again this Sunday. Like a broken little girl. Seeking solace in songs, words, deeds. But…. I feel alone. Yes…. The 3 loves of my life are with their peers as they should, but my heart is halfway around the world…. & frankly even if he were in the pew, He might as well be halfway around the world.
I didn’t intend to repeat history. I purposefully, carefully, selectively selected my family’s leader. But I am now & have been for over 10 years, their leader.
Broken, worn out, stressed beyond belief …. Leader.
God, scoop me up & lead us. Fill in the gaps for me & my children…. & of course our true leader. He’s in there. You still have him. Direct our paths with lamps so bright that through our tears the glare will pierce our soul. Lead us gracefully & humbly to You.

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for better or much worse


It’s so easy to speculate why a couple doesn’t “make it” or last beyond a reasonable season. As with any trial Christians, especially are the first in line to give a list of reasons coupled with appropo Bible verses to “help” you.

Let me be the first to say that if you come to me in earnest with a troubled marriage…. I’ll definitely be the last to cast a stone. Scratch that. I won’t cast a stone. Marriage is hard, y’all. I am pretty certain I’ve said this before, but as heavy as this is….it warrants being noted nearly every day. Like every hour of every day.

I’m also pretty certain I had no clue what I meant when I repeated after our wedding Pastor & said, “…for better or for worse.” I kind of wish he had been more clear. I kind of wish anyone would have told me the harsh reality. I would have even accepted crazy Aunt Bobby Sue jumping up & out of the pew to forewarn! Like…. “Hey…. you just might have to endure roughly 2 year of having a deathly ill child with no clear diagnosis.” Or, “Hey… you might lose everything at some point including your home or car.” Or how about “Hey, you know those old habits you’re certain have fled far, far away? Yeah… they’ll rear their ugly head & make root for at least a decade.” There are other distinct warnings that I can think of… but just a couple would have suffice.

Or would it? Just as I’m typing a curly headed, vibrant sugar & spiced, little girl squeezed me entirely too hard (as I’ve been sipping on ginger ale & chewing pepto pills) & belted sing-songy in my ear, “You’re the best mommy ever.” Or like earlier when a way too grown-y (almost teen-like) little man said, “You really did a great job today.” Yeah…I suppose if they presented me with those kind of cautions alongside the “bad” ones… well… what would I do?

Probably just about what I’m doing now. Sit. type. Cry. Endure. Pray. Believe. Hope.

Not necessarily in that order. Or maybe… yes. In that order. Can I add “drink coffee with copious amounts of cream & chocolate”? Ok… whatever… you don’t have to mix it. A chocolate bar (preferably the terribly scrumptious bars my hubby brought back from his latest trip to Switzerland… because I feel oh-so-fancy just saying Swiss chocolate) & coffee will be perfect. Honestly… any kind of coffee. Thank you.

Back to what I’m so irritated about. Christians. Really I am. I can say this because I am one & I am one. As in… I am a Christian & am also quite judge-y. Truth. I judge. I justify. Then. I. Feel. Awful.

Because I really get it now. How must I look to someone else just barely peeking in from the outside in on my own situation? Are they thinking… “Please! She doesn’t have it that bad!” or “What’s her problem…. they have ______, __________, & ________.” You know?? Because that’s probably what I would have done at least a decade or so ago. Ok… whatever. So like a week ago. Shame on me.

We’ve all got a story to tell. We all have walked so many hours in our own shoes. There’s really NO way to walk in anothers’ shoes, no matter how hard we try to understand. We never will. No matter how good of a friend we are to them…. we’re not hard-wired exactly the same. We’ve not ever been in their shoes. Who are we to say to do this that way & that this way? Advice? Yes. That’s welcome. But the pointing of the fingers? The shaming? The gossiping behind the backs? At church?!?? Oh no, no, no. Sorry, sister. That doesn’t cut it. Not in the Kingdom where I’m planning on going.

There has to be a good healthy balance between staying completely silent bobbing our heads up & down with lips pursed tightly to ward off any negative contention & the ever- so-insightful gossip, shame, accusing, etc.

Where is that middle road? The one where we really care & use our grown-up words & Biblical discernment to admonish in a way that has a healing path?

Too cliche? Too 90’s? WWJD? Seriously. What would HE do? You won’t ever know if you’re too busy judging & talking. From what I know… the Father is the judge. Our Savior is our advocate… at the right hand of our Father interceding on our behalf. We’re called to be like Him.  I remember Him studying. Being busy about the Father’s business. Healing. Restoring. Calling sin out, but but leaving with hope & love.

Lord, please use me & ALL of my crazy trials & tribulations to Your glory. Help me to be a help. Not a hindrance in the kingdom, in a person’s belief of You, hope in You. Let them see Jesus in me. Let me be the hands & feet of Him who served. Who gave more than I ever could.

Help me be so concerned with the kingdom that my own trials fade. Help me immerse myself in You, drench my heart in Your love… that I whole-heartedly give myself & family to You. I must decrease….

 

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words escape me & flood my soul


It seems to happen more often. But in actuality, I just realize that I’ve been in this select group now for nearly a decade. So what seemed to be quite rare…. well, it’s just not.

This community “gets” me. I didn’t want them. They’re like a a nagging in-law you try to ignore but can’t because you’re connected. You’re connected deeper & more intimately than any of you ever realize. They’re the ones you want to strangle, scream at, point a finger to…

But on a day like this. You just want to hug them. ALL of them. You want to tell them that it’s ok. Rather… you think it’ll be ok. God will comfort you. Right? You will do that, right God? You’ll never leave or forsake us. Right, God? Please.. .Lord….. hear our prayers. We beg you to not allow our souls to feel as empty & as dark as the moments just before dawn. Let it it be dawn now. Let it be morning now! Please deliver my joy… NOW.

oh, Lord…..forgive me for my child-like rants. I’m secretly hoping this is what You meant when You said to become like a little child. You did mean kicking & screaming right? Because that’s how my own 3  act approximately 22 hours of every. single. day.

You’ve probably guessed it by now. Another life snatched from her earthly body too soon. Yes. Too soon. I get it…. it’s not too soon, technically. It’s all in His timing. So….why does Cystinosis come with a sentence. I really don’t know any patients that died living with cystinosis. Meaning, they never die from natural or other causes. It’s ALWAYS complications from Cystinosis. Their bodies wear out. Shut down. Cannot process any more.

I’m about there, too. My body is worn out from cystinosis & I’m not even the one living with it. But, oh I am. I live with it. Its relentless reminders; dr appts, meds, vomits, tummy aches, headaches, body aches, cleaning-the-floor constantly….mean-spirited UGLY reminders.

Sometimes. It just all needs to quit. There’s no vacation from cystinosis, from its truth, from its ruthless stories.

I had a flashback earlier of a time when a snake kept taunting me. I kid not. Every day when the morning sun began to warm the soil perfectly to his liking…. the wretched creature would slither its head out & try to get to that perfect pasture. If I happened to be darting out our front door he’d quickly cower back through the base of our home, into a crack in the bricks.

Some time went on with him playing this very sick game with me of popping his head out, catching a glimpse (or hearing) me, then slithering back in.

I had HAD it. I set a stake-out & studied him closely for at least 3 days. I figured out the exact times he liked to slink across the hot bricks & crunchy grass the best & plotted my attack. Sorry snake lovers…. if you’re here….you might want to skip & read ahead.

The evening before, I had the shovel placed perfectly within reach to his sunbathing site. And just like clockwork, as the sun was purposefully & faithfully warming up an area to the perfect temperature…. I crept closer. I deliberately waited until his entire body was out of the bricks & he was in a sun drenched coma.

Then like a scene out of a cheaply made horror film.. I scrambled like a crazed lunatic, grabbed my strategically placed old rusty shovel, screamed like a banchee, & began to strike the snake way more times than it actually took to kill him. I remember yelling at him & crying. I was so exhausted with his silly mindless game of mocking me with his carefree sun bathing. He didn’t care that I was alone with 3 babies… one being brand new to this world. He didn’t afford me the courtesy of waiting until my husband could return from a 3 month long out-of-state project… or even wait for my father to ride in on his horse & save the day. He didn’t care in the slightest that I was deathly afraid of snakes & used to be haunted by nightmares as a young girl.

Cystinosis is like that snake for me. It’s taunted me enough. I am ready to have a stake-out & viscously pounce on it. I am tired of what it’s stolen from me. I remember “normal” & I desperately want it back.

Meanwhile….. in reality…. my heart goes out for this young girl, her family, & friends. God please…. forgive my selfish ranting & comfort them like only You can….

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Inspiration, Separation, & Desperation to Distraction…


I know. Odd title. It fits though. It’s where I am. I may only be here a hot minute, but if my (ever-so-fading) memory serves me correctly {did you know that memory loss is a sign of depression? I digress.}…. I’ve already been here way more than a hot minute…so here I go. On a quest. For the best. I’m sorry, really I am. The 4 year old in me peeks her giddy head when I type….

It would take pages of wordy words to fill in the spaces between the last post & now… or better yet, a $19.99 upgrade & let’s just say I’m not good enough a writer to warrant all that nonsense. So, I’ll fill in some gaps & allow your imagination to sprinkle in every now & then to suffice your utter suspense. All of my faithful readers are nearly in agony waiting, right? Nail biting agony? Ok, who am I fooling…. but here I go again. And yet again, for my own therapy of sorts. Therapy is expensive, y’all. Thank the Lord NOFA. (that’s code from our church for No One Fights Alone). (Time to insert your own deduction).

Ok….I’ve been severely impaired by HONY. I mean like…. I stalk their site, Facebook page, etc. daily. Oh ok…. more like hourly. It’s a sick little obsession & I am just so impaired. I say impaired because I am literally stuck in my computer chair. Like I wheel in it like a person wheels a wheelchair. I am dependent upon the wheels to grab the coffee to catch the newest induction. The images aren’t so gripping (sorry Mr Photog) until you read those little blurbs on each person. I cry. Every. Time. Every. TIME. Holy tears, batman. Seriously, it could be an innocuous individual simply stating that they’re waiting on a bus to see grandma or whomever… I. Cry. I realize I have my own pent up…. frustrations. disappointments. emotions. But…. honestly, does it justify the buckets full of tears? Please don’t call the “special police” on me. I embellish. Seriously. It was barely one bucket.

So, it sinks in. I am moved. I’m told lately by a “special” person with many letters behind his name (again, insert imaginative description & you’re probably right) that this is a good thing. Emotions. More specifically, crying. I don’t like to cry. I feel weak. Vulnerable. Fat. I have no clue why fat goes in the blank there. But it’s my truth.

I’ve always been moved by art & honestly what more beautiful form of art is there than human life? The swaying trees mock our dances, the air mimics our breath, the clouds inspire our dreams, & the sunsets ignite our deepest thoughts. But it’s always life imitating life. We all have a story to tell. A beautiful, broken story.

But I come from a town called Niceville. Florida of all places. It’s said to be on the redneck riviera. Ouch. But it’s home. My beautiful home. My solace. My thorn. My little world. And so… I unveil… HONV. Humans of Niceville. Stay tuned, y’all. This will prove to be interesting. Promise.

Go ahead. I hear you anyway… Bless her heart… xoxo

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I’m wishing I hadn’t just eaten lunch. A late lunch, nevertheless. I could’ve gone straight toward dinner, but no…I just had to stuff my insides full of none other than, pasta at nearly 3 in the afternoon. I’m reminded of this all too well after I read the social media posts roll in one after the other, after the other….& all the while my stomach churning…practically begging the question, WHY?

Not just why did you eat so much so late…but why in general. Social media is a two-edged sword in my little world. It provides me a great wealth of resources for Joel’s rare disease, an outlet for my (incessant) rants, & so much more. But, in exchange for all the good I feel & comfort & knowledge I receive, in return I get…the truth. The awful, ugly two-edged truth.

Our little cystinosis community is so small. You can find us represented from nearly every country in the world, but still there are less than 500 of us. Supposedly, there are about 2000 cystinosis patients worldwide, but naturally now all of them feel the need (nor may have the resources) to partake in the social stratosphere. The ones that are “connected” are indeed, connected to us all. We read about their personal lives, the struggles with cystinosis, & the joys of life in general. We become attached.

Grief struck our little community to one of our sweetest members, from Germany. She was awesome. I never saw a photo where she wasn’t smiling. She had such an upbeat outlook & didn’t allow cystinosis to rob her of her joy. She answered our questions rather willingly & oh-so patiently. Almost like another mother, we would run to her for advice. She was one of the ultra rare living & fighting cystinosis. Not many make it to her age. So we should be grateful, right?

I suppose.

I’m grateful for her knowledge. But, I HATE saying…well, she lived far beyond what anyone would think 30 or 40 years ago. I’m sorry, but in my world 40 still isn’t old. My husband is 31 & I’m 35. It just isn’t that old to me, anymore. But, I get it… we can’t compare her to a “regular” person, right? I mean, she did have cystinosis.

I hate cystinosis.

I’m not completely deft. I am quite aware that we can die any minute from any number of things. In fact, that’s what gets me through many days. I know cystinosis doesn’t place an expiration date on my child nor anyone else….but…it all still hurts. So for now….I mourn with them. I plead for the Great Comforter to come in & do His mighty work like a fabulous east wind. To blow through our community & heal & restore. To mend our hearts so beautifully back together….

Prayers for Sibille & her family & friends. Wish I could’ve met her on this side. Praying we will on the next….

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I’m not popular


It hurts to admit, really….but I am keenly aware that I will not win Miss Popularity nor Miss Congeniality at this point. Don’t get me wrong… I get invited to loads of little parties & gatherings, etc. If there is a Bunco party in town or a 31 party or a birthday party….you can betcha I’m getting an invite. I kind of think they’re hoping I’ll snap a good photo, but that’s debatable. ;)

So, what’s my deal? Why don’t I partake? Why can’t I throw on my cutest (non-form fitting…ok, spanx doesn’t count…they’re totally necessary) garb & run out the door? I mean, 3 kids, 1 crazy dog, & an immensely insane life….I should be chomping at the bit! But, I’m not. I’m choosy. Ok, I like to call it selective. It sounds less like a Jiff commercial.

I don’t drink. There I said it. WHEW. I feel better & my secret is out. Yeah, it’s probably no secret because I’m rather vocal about it (when I’m given a platform). P.s…..did you know there are platforms all around? Crazy, right?? ;)

I hate alcohol. Like even a drop. Yes, I’m no idiot. Jesus’s first miracle was turning water into wine. (Footnote (or whatever, because clearly I’m interrupting my train of thought) Jesus, I love you….but you have SO much splainin’ to do when I see you past the pearly gates. WHY??????)) The truth is I’ve NEVER witnessed an on-fire, heaven bound, makin’ satan tremble, kind of person be able to drink “just a little” long-term, anyway. I just haven’t seen it. Maybe I live around a bunch of lushes, which I get can totally happen when it’s completely forbidden. And yes… I DO realize that I am totally generalizing. It’s my blog & I’m totally entitled. :)

Call it what you will, but I see NO good in it. Especially when  it’s conveniently mixed with “physician scripted” pharmaceuticals. That’s really no beuno. You’re altering your personality, escaping from the day’s stresses, forgetting your troubles…. Ahhhh……if only that were real. Maybe because I have an alarm on my phone that rings approx. 10 times (at various times) starting at 6:45 am up until midnight…. I can’t do it, so I’m not tempted. HAHAHAHA. Not tempted???? GIVE me a break!! Of course I am!! Everyone around me is doing it! Ok, not everyone, but most everyone my age is! I see their little Elf on the Shelf pics where the little elf named Buddy, or Daisy, or Annoying, or whatever….. & yeah…. wouldn’t you know it!! Planted his lazy butt right in the fridge…. NEXT to the white wine!! I see your photos post Bunco debauchery (I mean party, really I do) where you said it was a “fellowship-ing” kind of night whilst every pic is bogged down with red solo cups & blank deer-in-the-headlight stares for Instagram. Anyway, I get it….I do!! It’s relaxing & we “so deserve it.” It’s been a long week! Little Johnny had soccer, school, 3 tests, 3 hours of homework each night, I had to work a double 3 out of 5 days, had to cook dinner EVERY night…. and on & on the excuses flow….just like…..you guessed it. ;)

Guess what?????? I’ve had a rough NINE YEARS!!! I kid you NOT!!! NINE years????? Who even says that?? It looks hilarious & very sad even as I sit & stare at the screen. Those words are practically mocking me with the way they sound in my head. Yet…. I have never turned to alcohol or pills. Tempted yes. But… I try very hard (sometimes I throw a tantrum that would embarrass a 2 year old) but I really try to give it back to the Lord. I can’t deal with it, either. You & me…we’re not that different. I’ll just take my Jesus any day over a drink….or pill. Any. Day.

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