Even If

Monday's typically get a bad rep and simply because they're the abrupt end to the alluring weekend and the forceful head-first jolt into the daily grind of everyday life. The headaches, the hassles, the hurdles, the hotflashes, the hyperventilating, the hives, the hustle, the "hot-damn will I make it out of this alive," minute by minute, hour by hour, existences that some of us face every waking hour, because our circumstances are daunting. Today, I had a Monday. One major mother load Monday.

Right now we are by default a one car family because by aforementioned daunting circumstances. This week, I have six doctor's appointments. Two of those appointments will be doozies. Three of those appointments will require someone to accompany me. This morning I thought to myself, "no problem, this is just physical therapy...I got this one in the bag." As us blessed with EDS are, sleep does not come easy, when 5:30 am rolled around and I had not fallen asleep, my body was unable to metabolize any sleeping aid or anything for pain, you could say I was frustrated. When my alarm sounded at 8 am I was less than thrilled. I delayed until 9 am because I no longer care so much about my public appearance.

I got up, I showered, I conquered eating applesauce and I called Lyft to take me 2.5-3 miles to my appointment. When I arrived and my fare was close to ten dollars including tip I knew I would have to walk home because #budget. As I walked home, I first was okay. I was aware of where I was and didn't think I was too far from home. As my route continued and my "paintbrush" aka my broken, disheveled body began to subluxate at every major joint I began to get angry. I should mention I'm not familiar with the emotion of anger. It is only in this past year as I've watched people turn their backs and never return, witness my body betray me in ways I never thought possible, and come to turns that the dreams I had for my life will never be realized did I experience feelings of anger that quickly would turn to overwhelming sadness. As I walked, or trudged, quite honestly I have no idea what I look like from an outsider's perspective when I try and move, but I lamented. I cried and whispered hushed yells to the sky.

DO.YOU.SEE.ME? WHEN.WILL.THIS.BE.OVER? IS.IT.FUNNY? I.DONT'T.GET.IT? I.CAN'T.MAKE.THIS.BEAUTIFUL. I'M.HURTING. pleeeeaaaassssseeeeeee.                                   just tears......................and sobs. carry me. STOP.THE.BLEEDING. (streams of tears, gulps of air)

deep breath, deep breath.

Luckily, by the time Nate looked on his phone and could see that I was walking miles from our house and texted me to find out what was going on and I fessed up to my grand scheme to not ask for help and save money and he being the hero that he is drove during his lunch hour to pick me up and drive me home(....mind you I only had a quarter mile to go- thank you very much), my tears had dried up and he found me doing my usual odd Kato like thing, leaning in a weird way, trying to capture a photo of a flower with my phone but not get any bit of my body shadow in the frame at all. However, when we arrived back at our cottage and I collapsed on the couch, the well had not run completely dry. As we sat there and I had no words as to "what was wrong," because the answer to that seems to quite honestly be everything, all I could say through streams of steamy tears was that there were just too many mountains to climb. Nate stretched out his arm in front of him and agreed, "Yes, there are millions of Mt. Everests as far as the eye can see."

And it is now that I am reminded of the song, "Even If," by Mercy Me. It's easy to sing and laugh and be filled with joy when things are good. But what about when they are not? What then? When I'm held to the flame? What is it that I will say? I know that God has allowed me to endure so that I am able to encourage others when they are broken because I am oh so familiar with pain. And those mountains? I know I don't have to carry them. I can lay them down and ask him to move them. But, here is where the rubber meets the road. Not all mountains will be moved. Not all prayers will be answered "yes." So many in our past years have been answered, "No." So, today I'm on my knees and I'm asking God to help me sing it is well with my soul in the midst of the unmovable, in the hours of the answers we never wanted to hear, and even the prayers we never thought we'd have to pray. I know He sees me. I know He knows I hurt. But I know He also wants me to keep singing.

Even If


They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through…


The Anti-Ode: Letter To My Paint Brush

You’re Awful and I find it hard to utter any words of even affable appreciation. We’ve never seen eye to eye, I’ve had a history of hating you, and in most cases the best idea for such a toxic relationship would be to end it. Simple as that. Cut and Dry. But, walking away from you would mean quitting it all. Giving up on fighting, on pushing, on loving, on faith, on family, on surviving. It would mean tossing in the towel completely on hope, turning my back on sacred vows I made to the man I love, and letting your failures conquer my spirit.

As a society we OBSESS over you. Are you skinny enough, toned enough, flat enough, round enough, plump enough, tan enough, long enough, lean enough, will you ever be ENOUGH? You’re like this never ending homework assignment, a constant project that we are never ready to turn in. If we could just make one more tweak or one more tuck- when really you’re supposed to be our vessel, our instrument. With you we compose our opus, with you we traverse across our lives. You enable us to reach each destination, to encounter every individual, to witness the good with the bad, the miracles along with the mundane. You are our paintbrush and it is with you that we paint our masterpiece. Our life is this giant, beautiful blank canvas, and our BODY is not a project but a paintbrush.

And yet like I said, you’re awful. You’ve never worked. You’ve never painted one decent stroke. I don’t even know if you have one decent ass bristle. It is like I ran downstairs on Christmas morning with all the rest of mankind and under the Christmas tree, down on bended knee, Santa Claus presented every boy and girl with their custom paintbrush. In mahogany boxes, there lay, on a bed of the finest silk, the most beautiful paintbrushes. Made with natural bristles from the hair of a horse with a sterling silver ferrule collecting all the bristles together, and a hand carved handle formed from the finest wood, etched with each owner’s name in gold.

And then I saw mine- it was sitting in a red Solo cup in the corner of the room. The cup filled with a mixture of dried up Elmer’s Glue, cheap finger paint, glitter, scraps of construction paper, and my yellow plastic paintbrush with a slit down the middle. The synthetic bristles, made of polyester (not even nylon), were hard as a rock because the brush had been left to dry up with the remnants of that plastic cup. I tried to pull the brush from the cup, I had to yank it so forcefully that the plastic cup ripped and now a piece of plastic is stuck to the end of what remains of the bristles. Half are stick straight, the other half have dried with red paint in them and are sticking in every which direction- like the paintbrush either stuck its finger in an electrical outlet or got struck by lightening. However, gaging by the crack slicing through its plastic handle, I’ll go with the latter and say lightening had it’s hay day with my paintbrush.

My paintbrush bothers me. While others are painting strokes of genius, creating families, dipping their toes in the sand while jet-setting here and there, and quite simply maybe just doing the 9-5, my foul paintbrush struggles to take a shower. We are not painting a masterpiece. We are not even putting brush to canvas. Right now, no art is being made. While in theory, I like the idea that we make our bodies our paintbrush and our lives our masterpiece- my paintbrush has failed me, way too many times to count.

With everything in me, I want to quit you. I want to walk away and be done. You are painful. You are way too much work. Even when I force a smile or briefly open up to someone about how hard you make my life, I still downplay how hard you are to be trapped in. There is no one who understands how much I despise you more than me. As women we are told to praise our bodies. For our hips that allow us to carry babies. I’m barren. For our arms that cook and feed our families. I’m too weak to stand up that long without passing out. For our chests that give our children a soft place to be comforted. Wrong again.

Yet, here I am and here you are. We are still here, against all odds. Here is what I can say- You are merely my frame. I give you no credit for my heart and for my soul. I am stuck with you until Heaven and I pray that in the time between now and then, my eyes will see enough beauty, my hands will hold enough grace, my feet will stand on enough truth, and my ears would hear enough laughter to balance the tears. This is the anti-ode. The only accolade I can give you is that you’ve won many battles, but in my mind I think that’s a toss up between the one who’s fighting and the weapon that soldier chooses to bring into the war- and between me and you, I’m going to grab my heart and soul before I reach for my paintbrush any day.

Letters To Sunday-To Finding Them Again

This post, this blog, is four years in the making. I’ve hesitated. I’ve stalled. I’ve edited, re-wrote, deleted, stared at empty screens, scrawled out pages and pages in notebooks, abandoned notes in my cell phone, laid in bed at night for hours forming perfect sentences in my head that never find a permanent place in my memory or I fall asleep typing-my brain sprinting ahead of my ever disabled and disjointed body.

All of our lives we are infatuated with Fridays. I mean, as a kid, ABC launched a marketing campaign, "Thank Goodness It’s Friday" (TGIF). Of Course, The Cure’s song from the early 90’s reminds us that it’s “Friday I’m in Love.” Each week we anxiously wait for Friday to arrive, for the weekend to begin, and almost like our lives can resume- almost as if they’ve been on hold since Monday morning. However, there’s always been this thing about Sunday’s. They’re good but they’re also tainted. Bittersweet. Enjoy it...but know just around the corner Monday looms like a dark cloud. My siblings and I even started calling them the “Sunday Blues.”

But, I'm almost certain, we are not raised for a disdain towards Sundays. At least not Sunday mornings and afternoons because those normally include donuts or cinnamon rolls, Jesus, walks outside, and designated moments to get lost in the pages of another world (book nerd alert). It's a day that perfectly lends itself to a delightful and guilt free nap, perhaps a family meal, a ball game, the freedom to work on a creative endeavor or hobby, or even garden- gaining the satisfaction of working your hands into the ground- turning over soil and then eagerly and sometimes impatiently waiting to see what that afternoon might yield in the following weeks and months to come. If you’re lucky, it's conversations over bike rides and BBQ's, watching sports with your family, sitting down by the fire with tea or hot cocoa and one of your best friends (if they happen to even live within driving distance). Sundays could be your day of tradition, where you might always take a drive with your girls or your one and only. Never the same route crossed or perhaps journeys down old familiar roads. There are no rules, so you can stop on a dime, make a U-turn, spontaneously stick your head out the window to feel the fresh air, lick your salty lips, snap a thousand quick pics of the towering canopy of trees overhead or the sunset melting dramatically above.  Quite frankly, the drive might just be about a playlist that you need to share and the lyrics that you need to have someone else hear with you- through both the tears and the laughter. 

Sundays are full of possibility. Go to church and worship, stop at the farmers market, wear your cozies all day, if you have to choose a meal- then it most certainly should be brunch. Wear sweats and your tennies. Take a long shower, wash your hair, and THEN put on a baseball cap just because you haven't had a chance to wear one for awhile but not because your hair is dirty and you’re trying to hide it. Sit on some swings, lay in a hammock, build a fort, bury yourself beneath the covers- if only just to steal a few minutes with a flashlight, a magazine, and your daydreams. It’s Sunday. Not the end of the world. And for the record, I’m saying this to ME, even if you’re the one reading it, because I NEED to hear it.

Here’s the long and short of it, my world as I thought it would be, whatever we think that is, crumbled a long, long time ago. And It kept crumbling. The truth is, I’m sitting on top of ruins and not because I want to, but because I can’t get back up. Ten years ago. I had the word, “hope,” tattooed on my wrist because I believed with every fiber of my being that God was my hope. When I had that tattooed on my wrist, my story was already many worlds of messy and broken. Easily a trilogy could have been written, and like clock work, the day after that tattoo was placed, I was hospitalized for five days. Each day of that hospitalization, I would look down and remind myself of His presence. What I endured a decade ago feels like hopscotch in comparison to where I now lay and my tattoo? Well, it has faded substantially and unless you knew it was there, it’s hardly visible. My hope is not extinguished but my spirit is crushed and we will get to that. Another story, for another time.

Four years ago, Nate and I had just received the devastating news that I would never be able to have children, after trying since marriage to conceive. Later we would go on to find out that I was not a candidate for any fertility treatments (a very long and awfully devastating story). I would then go on to receive a hysterectomy that would leave my body permanently foreign to myself and eventually be diagnosed with a number of diseases that are incurable and have left me permanently disabled. However, four years ago with just the news of knowing I was barren we stood together in church on the evening of Good Friday while living in Washington and at the end of the service our Pastor got up and said in summary, “What’s great about Friday for us is that we know Sunday is coming. We can go through tonight and tomorrow and come Sunday morning we can rejoice and know that there is Victory and Death no more. However, what breaks my heart is that there are so many of us in this room that are living in a Friday world. Where you are depressed. Where things are constantly broken. Where you are broken and hopeless and filled with pain. Or you are living in a Saturday world. Where you are brooding, wondering what the future holds, or if it holds anything in store for you. Again, it just seems so desperate or hopeless. You are living in a world without Sundays.” Without looking at my husband, I knew this hit his heart like it had mine. Currently, we are living in a world without Sundays. I don’t know what God is doing in our story but I know God wants victory in our pain, in our brokenness, and in our defeat. I can tell you right now it hurts more than I thought possible and to see my husband’s pain through this will never be something I can bring to justice.

This is not my world as I thought it would be. In a moment of utter honesty, each week I feel like I’m living 7 days of insignificance. I didn’t expect to be on home healthcare, but this isn’t about benchmarks. It’s about the raw sanctity of life and really it’s never how we planned. If people are looking and they get a glimpse of my truth, oh well. Take a good hard look. It’s not anything like I imagined. And I’m guessing if we were in the lunch yard in elementary school you wouldn’t be trying to trade me a darn thing. But, here I am- I cry in the car when I’m driving alone, almost always in the shower, and sometimes when I catch my husband staring at a baby or playing with the kids at church.

It’s often that you might find me staring off somewhere or nowhere-out a window in the car, deeper into the colored wall of a room than may even exist, much farther and past where the clouds actually cover the sky, into the petals of a flower- never once the artistry lost on me, entranced by the lyrics and musicality of a song (unable to fully get “lost” in a song like so many people claim because each note and word evokes such emotion.) When asked what I’m thinking the easiest answer that comes to my lips is, “everything.” This is not my attempt to be vague or mysterious but to in fact be honest.

So without further ado this will be my valid attempt at everything. These will be letters of questions. Some rhetorical. Some that answers will never suffice. And some that aren’t supposed to, at least this side of Heaven. This will also be letters to heroes of mine-thanking them for their example, whether they will read the letters or know they exist-I suppose I will never know.  These acts of obedience will be letters to broken dreams, advice to a daughter or maybe a son I truly thought would one day exist, they will be laments, prayers that aren’t always beautifully arranged bouquets of words, acts of worship, and some days they will just be tears because I believe that being strong sometimes simply rests in the truth of letting us be weak so that we can be held. There will be tributes, lyrics, photographs, unsolicited advice, things that make my skin crawl, and break me. I can’t promise you’ll love it, you might hate it. What I can say, is my desire is for it to be real. I don’t know if every post will end full circle, conclude tied in a bow, and that there will be light at the end of every tunnel. But, I’m trying to blow back into the embers and to reignite the spark of hope. It may be almost faded from my wrist but God still writes to me in the sky, still speaks to me in scripture and song, I still brake on the side of the road and get out of my car for His beauty in flowers and nature, I find Him hiding in secret and yet ordinary places. So, this will be my ode to survival, to a Sunday kind of love. The only one I believe worth living for, even if I physically can’t get out of bed. My Letters to Sunday, as much as I love the weekends, I'm searching for Sunday.