Just breathe

Ely was down for his nap. Successfully. That’s an important detail. I paced the parameter of the house. Lap completed, I began again. It was aimless. I was looking for my friends, Motivation and Inspiration. Two rounds through the house convinced me they were out and about and I would not find them here. I tried my hand at a fiction read. I made it through three short chapters before I realized there was nothing in me to even give this.

My mind jumped to my options. TV, Facebook, Instagram… Hmm…. Nope.

The house was quiet. Without even thinking about it, I found myself moving to the couch and curling up with Titus and Ely’s favorite Boise State Snuggy. I wasn’t tired, but then again, what would I call it? I had no energy to do anything. The desire and zest for any kind of project was depleted out of me.

It’s been an emotional few weeks for me. I’m not sure the trigger exactly. We have passed Titus’s one-year mark of going to be with Jesus. Around this time last year we were navigating Columbus travels and the clinical trial world with Ely. I know I have lots of reasons to feel deep emotions, but I truly can’t put my finger on what is happening in my heart and soul right in this moment. I laid down, closed my eyes. I lay still. Completely still. Which is impressive for me (ask my husband whom I drive crazy with my constant fidgeting). My eyes opened and fell on the canvas Danny had made for me for my birthday. An incredible gift; a beautiful family picture of Danny, Ely and I after Titus passed away, and photo-shopped in was one of my favorite pictures of Titus just before he had turned 4 years old. He fit perfectly between Danny’s arms and was slightly faded out, showing how close, yet how far he is now.

family photo 2017

How this has become my life, I’m not really sure. It just happened. I wonder at my evolving as a mom. And I feel a bit of a failure right now, if I’m speaking truthfully.

Ely’s bedroom door creaked open at that moment and I hear a sweet “Hi” float down the hallway. I returned a sweet hello back, beckoning my son to come out to the living room. His feet pitter-patted down the tile floor and he slid between the couch and recliner to get to where I was still laying snuggled under the blanket. My little one, he understands the need for a good cuddle. Without hesitation, he spotted his place next to me and burrowed in. I brushed my fingers through his hair as we both quietly laid there just being, him in his world, me in mine.

I thought of how I used to plan monthly themes and lessons for my boys. One month was “Goodnight Moon.” Titus loved that book. His first year of preschool, they had a program where they could borrow a book over the weekend from the library. His first weekend after school started, he brought home Goodnight Moon. It gave us all a good chuckle. He obviously missed the point of bringing home a new reading adventure. We read from the school copy all weekend, sent it back on Monday, and continued reading it over and over again with our copy at home in the months and years that followed. I did my mommy duty and pinned all the good stuff to teach language and comprehension from Goodnight Moon. We had a yellow chart I hung with pictures from the stories. We played matching games, made a storyboard, and practiced our words.

Ely interrupted my remembering as he hopped down from his snuggle-spot and ran over to the stuffed animal basket to grab “snake”. You might like to know we also have “duck”, “doggie”, “neigh”, and “Dumbo”. But “Snake” is kinda special. You see, I’m terrified of snakes. I downright can hardly even look at them! My brother knows this about me and has plagued me with images, videos, even real snake skin to watch my fears flood out of me in tears, screams and quick sprints away from the scene of danger. I’d like to say he’s grown out of this and that he’s matured now that he’s in his 30’s.

He hasn’t.

But I have grown in tiny steps to conquer this fear. Perhaps to some of his credit (Thanks, Brad). But also to some of the credit of having boys.

It was Titus’s second trip to the zoo. We went into the store at the end, knowing we’d likely buy something for him. I was thinking something cute and furry. He had other ideas and went straight for the snakes hanging down the far wall of the store. I felt a shiver and chill go down my spine. No joke. I tried to detour him to the penguins, or perhaps a cute fluffy lion. But he had his eyes on a green and black snake with yellow eyes, his favorite color, of course. After an inner dialogue that I needed to be the adult and this was truly a stuffed, fake animal and was not going to suddenly come to life and eat my whole family in the middle of the night, I said ok. Titus sat behind me in the car and all the way home he threw the snake at my head pretending it was attacking me. Lovely. What a boy. But it made all three of us, Titus, Daddy and I, laugh.

Ely climbed back up next to me, snake around his neck, the remaining part stretched out down next to me and again I wonder at my growth as a mom. Today didn’t feel like growth. I felt stale, depressed. I cuddled that snake and that cute little boy of mine in close. One tear fell down out of the corner of my right eye and I wondered at how it escaped without company. Perhaps it was just enough to remind me that I could still feel. I was still here. And yeah, this life still hurt. Deeply.

So much missing. I should clean the bathrooms. But I can’t. Nothing will work, hardly even my mind which is normally going a million miles a minute. I breathe, Ely breathes. I feel him, hold him tight. I used to feel Titus next to me this way. Right up to the moment he took his last breath. How I miss him. My heart aches and yearns to see my two boys together again. I can’t wait to see the two of them play and adventure in a pain-free, joy-filled place.

These days here feel so permanent. Hard. Like swimming through mud, they can be dark and difficult to move through. And yet I keep remembering that this is all so temporary. Sometimes that helps. Other times it feels like the voice reminding me of this truth is Charlie brown’s teacher and I can’t understand a word.

There is a resolve in me though. And knowing my current state and condition, I know it’s not a resolve of mine, but of the One who is greater than all this pain and heartache. I’m held. Just as I am gifted the moment of holding Ely. I breathe. My Abba – my God Almighty who fights for me, breathes through that breath and gives me courage to take another. We repeat. I’m not conquering anything today. But I’m doing great soul work in just being.

This is hard. Breathe.

This is painful. Breathe.

I’m not alone. Big deep breath.

It’s okay if all I can do is lay here next to my son. And just breathe.

Thanks for listening,

Bekah

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Remind me again, please

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that won’t disappoint. 

He keeps his promises.

He will redeem.

These statements have been running through my mind a lot lately. This month has proven to be an emotional roller-coaster for me. I found myself scribbling these truths up on the giant decorative mirror in our dining room because I needed to be reminded… often. Truth needed to be spoken to my soul, over and over and over and over.

Today, my baby sister and her hubby celebrate 3 years of marriage. Flashing back 3 years ago, I had barely made it to the wedding flying in at midnight on Friday night with little Ely in tow. It was supposed to be the whole family on the trip, Titus given the honor of ring bearer and I, the matron of honor. But circumstances didn’t line up as such and we left Danny and Titus back home occupying a room on the neuroscience unit at our children’s hospital. Titus had been hospitalized, yet again, for uncontrollable seizures. He spent long days there as they quickly weaned him off one medication to put him on yet another in an attempt to gain control over these seizures. It was heartbreaking to leave them behind. Ely and his cousin, Colby, did a wonderful job standing in as the ring bearers in Sarah and Michael’s beautiful wedding and we flew home at 6 am Sunday morning to be reunited with the other half of our little family. I remember arriving home, knowing Titus had just gotten discharged. Danny had made an extra stop before heading home to buy kites. (This was one of those moments I constantly thank God for gifting to us and prompting Danny’s heart in this way.) We joined them out on the big grassy park right by our house and watched daddy fly a magnificent shark kite. Neither of them had ever seen a kite before. I will never forget the excitement, awe and pure delight exploding out of each of our boys and it was contagious. I felt it too.

We had just plowed through one more obstacle to help our little boy and we celebrated that, but deep down in our guts we were unsettled, feeling as though something was coming – that we weren’t in the clear. We’d learned by then to enjoy the moments, but not to let our guard down. That year, 2014, Titus was the same age Ely is now. We had no idea what was actually lying in wait in both our boys’ bodies.

My heart aches for what could’ve been had Titus received an early enough diagnosis to get in to the enzyme replacement trial that opened just shortly after that kite flying day. But we didn’t, he didn’t. We had no idea what we were facing. And I constantly have to come back to…

“This is temporary.”

“God will redeem!”

“He promises a hope that won’t disappoint.”

“This isn’t over,” I say to myself as I ponder that beautiful memory 3 years ago. Titus’s story has not ended and someday we’ll be together with Christ in glorious bodies – perfect without disease! That day will come. And in the meantime, redemption is here too.

God gives us joy in the midst of heart pain.

He gives us peace in the middle of turbulent waters.

He gives us strength under weighty grief.

He restores my soul when the circumstances of this world and my own destructive patterns shatter it.

He gives direction and a sense of purpose in a dark pit that feels impossible to move from.

These are all signs of his love, his involvement, his redemption. This is God. Here and now.

So, until the day all is fully redeemed and restored whole…

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that will not disappoint.

He keeps his promises.

He will redeem.

May truth hold our minds, hearts and souls captive in the midst of our heartbreaks, disappointments and sorrows.

Thanks for listening,

Bekah

Schlumpy, much?

I have been consumed lately with what my heart looks like. I am overly perceptive of how I react to things, mentally putting the information away into my file cabinet of “interesting” to go back through later. My reactions are wide and varied. My son fell off the bed a few weeks ago and hit his head straight on the tile floor. There was nothing I could’ve done in this particular incident to stop the fall except to prevent him from getting on the bed in the first place. (Which is now a rule… that gets broken repeatedly.) As I rushed to his side, surveyed the possible damage and held him close rocking him, I was alarmed at the reaction I was forced to shove down through deep breathing to maintain sanity. The anxiety, the sweating, the heart pounding, the hands shaking, the tears close to pouring over the rims of my eyelids… all of it came on in a matter of seconds without a choice. My brain was hijacked by the memories of previous traumatic experiences with my boys and their disease and the adrenaline fed the fear and high emotional reactions. It took a long time to calm back down and get back to a place where I didn’t feel so out of control.

Other times, it’s just little things that happen that make me reflect on what is truly going on deeper down inside me. I’ll be trying to have a conversation with someone and I simply just can’t. I can’t think of the right words, I can’t think of  a complete thought, I can’t process what they are saying. It’s awkward! And then there are the moments where I find myself defensive for absolutely no good reason. Still other moments, I actually feel a bit normal and able to function without having to think too hard about it, which believe it or not, throws me for a loop too.

On a daily basis, I seek to really live (meaning, I’m present) despite all the reminders around me of our pain and grief and missing. My emotions go from joy and creative passion to absolute dread and exhaustion. And in between is this numb sort of place where I do most of my living. I numbly work, I numbly exercise, I numbly take care of my family, I numbly interact… but wait, am I really living then? I call it “schlumpy”. Is that even a word? I guess it is now!

As I sit in my schlumpy-ness, I wonder at the state of my heart. Is it too hard? Is it becoming stone with thorns surrounding it? Is there beauty in there somewhere still waiting to be discovered or have I used all that up and am doomed to be ugly and broken for the rest of my life? What shape does my heart even hold? Like a broken nose that never grows back quite straight, I imagine my heart has been broken enough that it cannot look normal. Is it twisted and ugly or has it taken on a new refined, yet wild natural beauty? Maybe yes to both is the right answer. How can it not show the scars and the damage it has endured in this broken world? Yet there is a living being in that heart. It’s the Holy Spirit; God himself taking up residence in me. How He can find my heart to be a perfect home, I have no idea. But what I believe to be true is through the vines of the thorns that have grown around as a result of disappointment, hurt, selfishness, anger, loss, and pain, is a light. A pure, full spectrum color, dynamic light that beams around and through and inside out. It puts a spotlight on the brokenness, but not in the way I would expect it to. Prisms of color I have never seen before as a result of the light hitting cracks and awkward angles, bursts out. As those colors beam brightly, I see that growing amidst the thorns are actually beautiful roses. Without the light, I wouldn’t be able to see them, the darkness camouflaging them, trying to snip them off the vines with the scissors of nonexistence. But nonetheless, there they are. Growing. Beautiful. And I’m left to wonder what in the world to do with them. Am I uncomfortable with them being there? Those roses are a signal of life still at work. That death has not won and there is still life to be lived; missions to accomplish. Do I snip them off and say, forget it? Tending to these roses takes work… too much work. I would have to feed them, water them, provide them with sunshine and plenty of room to grow. It would require pruning and caring for new growth. And that is hard. Really hard. And right now, I’m schlumpy.

But I’m reminded, with a gentle prodding, that there will be a time to care for those roses, but there is also a time to sit back and allow the joy found in these beautiful buds to just be, simply because. Not because I did something to earn it, deserve it, or make it be, but simply because joy gets to exist in the presence of my God… the one who lives right inside of me. It’s one of his many characteristics, one of the deepest and most profound for me. Joy and schlumpy can actually exist together for a time, but then joy gets to win. Is it happiness? No. So what is joy in the mess of this heart of mine? What is it in the mess of this broken world and the complicated back and forth that is living in between broken reality and hope of redemption?

Joy is not a what. It is a “who”.

Who is my joy?

My joy is Jesus.

Jesus who loves beyond brokenness and faults, gives peace throughout this journey and redeems the in between and now, but also the future forever. Joy does not mean I carry a happy flag around. It means I look to Him for strength, for hope, for sustenance. It means his love reflects in and through me. And when life gets schlumpy and weary and I-just-can’t-do-this-anymore, I know my joy is not lost, because He is not lost. Jesus has never left my side and will always be there as my hope and joy no matter how dark this reality can get. Am I blind? Am I romanticizing this too much? How can Jesus really be enough when I feel the dark depths of depression and the wild ride of anxiety creep up on me?

I guess you’d have to know and believe the end of the story. The one where Jesus has conquered the very darkness that has settled in a dark cloud over our household… death.

Death… so separating, so lonely, leaving me to grieve the finality it is for all of us here on earth. Yet, only in this world is it final. Jesus has the final say. When he went to work and went to the cross and died for us, the very resurrection of his life showed the victory he holds over death and ALL things evil. His death and resurrection reflects across the brokenness of my heart with one big loud “I LOVE YOU” and “You are worth this sacrifice” and more, “You are worth this VICTORY”. Death, hate, pain, grief… all of it is redeemed – made right- through this great love story. All he asks is that we believe him! That we believe he really does love us. That he really has won. That this brokenness is redeemed and someday, we will never experience this pain again. For now God gifts us with hope and joy, also known as Jesus, in our shaded, fractured, damaged, despairing, gaping wounded hearts. Mission accepted… even in my schlumpy state, for my heart longs for all that you are, Jesus.

These are my hope and joy gifts…

 

 

Thanks for listening,

Bekah

I am a mom

What does mothers day hold for me exactly, as I live out bits of other moms’ greatest nightmares and fears? Honestly, mothers day for me has become a paradox. Confusing, too. The truth is that a part of me wants to pretend this day doesn’t happen and ignore everything in me that squeezes tight. The other part of me wants to climb to the tallest point and declare loudly my role as a mom. I am a mom!

I am a grieving mom.

I am a broken mom.

I am often a sleep deprived mom.

I am a grouchy mom.

I am a mom who battles against weight gain.

I am a mom who struggles to find balance.

I am a mom who snaps and yes, sometimes even yells. (I might even slam a door or two.)

I am a mom who grows impatient, feels insufficient and sometimes just wants to stay in bed.

I am a mom who has placed value in how well her kids are doing.

I am a mom who sometimes worries about what others are thinking as I parent in public. (And sometimes, I truly do not care.)

But… more importantly…

I am their mom. Titus and Ely’s.

 

 

I am a patient mom.

I am a caring mom.

I stretch myself to places I didn’t know I could go to be their mom.

I am an advocating mom.

I am a dedicated mom.

I am a mom who’s heart is torn apart and put back together in new ways as a result of being a mom… and it’s beautiful.

I labored for hours (and in Titus’s case – days) to be their mom, and that labor hasn’t stopped. It has just changed so I changed with it to be their mom.

I am the mom who kisses boo boos and apologizes when she gets angry.

I am a mom who searches for adventures for her boys to experience.

I am a mom who held her son through to his last breath and had the holy honor of ushering his spirit into the arms of Jesus.

I am a mom.

Moms,

We are patient, we are impatient. We are loving, we lash out in anger. We are teachers, advocates, coaches, therapists, fighters, and mediators for our children. We also are the first in line to show our kids how to screw up and treat others wrongly. And in turn, the first to show our children how apologies, forgiveness and grace operate in a broken world.

What a horrifying, painful, beautiful and fulfilling role to be placed in… mom.

It’s different for me this year, as Titus’s transition to Heaven as left a big hole in my role as mom. But as with everything in life these days, my heart approaches mothers day with grief and hope holding hands. My pain is held within God’s promise… a promise to redeem. 

To redeem not just my son’s disease, death and our separation as a result, but to redeem all the ugly parts of me, the places where I’ve failed as mom, wife, daughter and friend. And because of His promise, I enter my day knowing we experience redemption right here, right now. Otherwise, I wouldn’t be able to do this… write and tell our story. It’s a link in my redemption story.

So yes, I am a mom. So are many of you… maybe even in ways that don’t look “traditional”. You are still a mom. But even more importantly, you are a redeemed and loved daughter of our God –  a king who will one day make everything complete and right. In the meantime, He wraps us up in hope and joy filled blankets as we hold pain and grief, failure and loss in our hearts… because we are moms.

And you, my dear friend, are a beautiful mom.

Thanks for listening,

Bekah

Hope on a broken bridge

I sat there in his room, curled up in a ball as if that position might be my protector. Titus, my 6 year old son, no longer inhabited this room and the pain came full on in that moment. This. This is what I’d heard others refer to. The wave of grief thrashing so hard over you. If you give in to it, you drown in it and that’s painful. But to push it away is to stop living and become numb and unaware. I’m sorry, but I love my son too much to pretend it doesn’t hurt. And so I feel it. I’m engulfed and sorrow has drowned my heart. I’ve fallen off that bridge; the one that held comfort, security, and expectation. I look up from my place of desolate sorrow and see a faint outline far above me of that smooth, paved bridge. I can’t get to it, for I have fallen.

As I grieved, I allowed myself to gawk at what happened to us in a matter of a mere year and a half. I look at the pictures throughout my son’s room, all his different life stages, and I ask out loud, “What the heck just happened?” My mind quickly took me through our healthy delivery on that life changing day in late May, 6 years before. My baby boy who passed milestone after milestone at genius-paced speed. (I mean, come on… aren’t all our babies bits of genius?) I pictured how he always had a smile on his face, a twinkle in his eye. My toddler who learned to outwit me, copy me, woo me, anger me. The preschooler who greeted his daddy at the door every day after work, who loved to go to school and cared deeply for those around him. The kid who welcomed a baby brother into the world with love and enthusiasm and then two weeks later asked if his brother could go back into my belly. And then the nightmare memories. His first seizure. Then days with 100’s of seizures. His growing clumsiness. The desperation to search for answers so we could fix whatever was causing him all this pain.

And then, the diagnosis came and it wasn’t good. It was Batten Disease which is fatal and incurable. I could no longer hear him say mommy, for he couldn’t speak. He no longer ran to meet daddy at the door, for he couldn’t walk. He no longer enjoyed his favorite food, chocolate chip pancakes, for he couldn’t chew and swallow. He no longer laughed at his brother’s goofy antics, for he had gone blind. And then on September 17, 2016 it swallowed him whole in one final breath. This was not what I had planned or expected for my sweet, adventurous, joyful Titus.

As I dove deeper in my wailing and desperation to find solid ground, to stop this emotional free fall, desperate for ground zero because perhaps I’ll at least be able to stand, I cried out, “Lord, I cant. I just can’t. Please be here. Be in me. You’ve gotta take over because I literally just can’t.” I’m frozen.

It was subtle, but when I surrendered to the pain and surrendered to Him, a sort of kindling ignited inside. This pain can’t be for naught.  As I envision where I had fallen, I look around and see a treacherous bridge ahead. It climbs large mountains and falls into deep ravines and goes beyond what I could ever see and know in that moment. And I know then, I must walk this broken bridge. This brokenness, this is where I will now live. I look around and familiarize myself with sorrow and find myself washed up at the foot of the cross, seeing it at an angle I’ve never seen it at before. Seeing my Lord, Jesus, in a way I’ve never seen Him before. He was utterly broken and beaten and given in to complete brokenness so that in our brokenness He could become enough. The promise it held was glorious and balm to my wounded soul. My grief, our loss, my not enoughs, and what ifs and if onlys have brought me here. Am I foolish to still desire the uncracked, paved bridge far above me? I might be, for those walking above cannot see the beauty that lies deep in the crevices and dark cracks down here.

As I stand up in Titus’s room, I put one foot in front of the other and beg for strength to continue because, the truth is, I really do want to continue. I want to see God redeem the ugly to beauty. And in that moment, He gave me eyes to see out my back patio window, a potted plant with a broken stem… it was a near exact copy of a picture he had shown me in my mind that I had drawn in a journal entry over a year before. At the end of that broken stem was the most beautiful blooming yellow flower. Hope.

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Okay, Lord. If this dark, steep, split apart ravine is where I will find you, where I will see with new eyes beauty to behold, where I can be true to who I really am and what I really feel, then I will walk this treacherous, broken bridge.  But only because I know you are God. You are good. You are enough. AND you will redeem. So as I walk I lift my eyes to the hope you provide that feeds my soul. Hope that is found at the foot of the cross.

“Jesus said, But this is how God will rescue the whole world. My life will break and God’s broken world will mend. My heart will tear apart – and your hearts will heal. Just as the Passover lamb died, so now I will die instead of you. My blood will wash away all of your sins. And you’ll be clean on the inside – in your hearts.” -Sally Lloyd-Jones from the Jesus Storybook Bible

Thanks for listening…

Bekah

The escape plan

I was sitting at a red light so I quickly clicked on my notifications to see what I might be missing or need to know. Out of the corner of my eye I noticed the light turn green so I took my foot off the brake to slowly roll forward while I clicked my phone off and put it away. After all, I don’t text and drive, don’t ya know. Only when I’m at a red light. “Whoooop Whooop” rang in my ear, a quick blip of a siren. I looked in my rear-view mirror and realized to my dismay, it was intended for me. I sighed and my shoulders slumped as I pressed on the gas, turned through the light and pulled over noting the time. Yep, my son will be late to school today. And then began the pleasant conversation one has with a cop after being pulled over. You know, the one where he asks what business you had on your phone that you needed to do it while behind the wheel of a vehicle in drive. Ugh. Nothing important and it was just plain stupid. And I pulled away with an extra piece of paper when we were done. No tears spilled, although they were close, but my ego took a big hit. All day I’ve been contemplating this experience that started off this fine, sunny, beautiful Thursday. I dropped Ely off at school, jumped back in the car (feeling a bit grouchy about it all) and drove home. I pull up to a red light. I sit there for a moment. Geez, it’s quiet. Automatically my hand reaches for my phone! Like it seriously did it all by itself! I caught myself just before turning it on and threw it back in my bag. What the heck, Bekah?!

I had to drive that same exact trek 6 times today. Once to school and back for drop off. Then to school and back for pick up. Then to Ely’s occupational therapy and back (which is just down the road from his school). You’d better believe my phone stayed put inside my purse, but my mind went crazy. I made a couple phone calls on one of the trips (using hands free bluetooth of course!), the others I would turn on the radio. And I started to worry about my inability to sit in the quiet. The quiet can be a little bit scary for me. The undistracted can be an emotional abyss that looks dark and looming. So I look for an escape plan. One that takes me someplace artificial so I don’t have to deal in the real and vulnerable. And it’s become a bit obsessive. It doesn’t always look like Facebook, texts or phone calls. It could be a fictional book. Or food. Or TV. We all have our list.

In all my driving today, on my final trip home, it hit me. I’ve been looking for an escape plan through all this because my mind is pleading for a break. It’s begging to run from pain. My nervous system is operating at maximum sensitivity levels and it doesn’t take much to push me over the edge. This is my daily struggle. The one where I’ve become really good at pushing back the emotions because they might make me or someone else uncomfortable. Choosing the superficial and surface escape route is much easier. Oh how I grow tired of it. Even when I’m caught up in the act of distraction, my heart grows weary of it and yet I don’t stop. What might be on the other side if I do?

It’s the season of lent. The season where we pull back, we sacrifice, we take away, we re-evaluate, we pray more, we become aware of ourselves and our need for God. We stop turning to our own escape plans and turn our full attention and focus on THE escape plan. The one where God sent his son Jesus to this earth to sacrifice his life in order to save ours. That escape plan.

So what will I find on the other side of distraction and faulty escape plans?

I will find a God who heals. And, yes, while I believe God can heal physically, well, the truth is, that hasn’t been my personal experience. I’ve watched so much death happen. Even right here in my living room. But I have to be a person who is willing to remember! Remember how He has carried and continues to carry me through. To remember the fullness of life experienced right smack in the middle of the most broken of times. To allow the healing work he is doing in me to sink into my soul and be a healing balm to my wounds… ones that I will carry with me for the rest of my life.

My eyes tear up when I see another family with needs like our own. And that distraction tugs. The uncomfortable sensor goes off like a siren! But I want to say, so what? That reaction is God’s heart in me. Let it be.

I feel the jerk of my heart beating like it’s reminding me how very alive I am and how gone from this earth my son is. There is that sensor! Distract! Distract! But I want to say, so what? That is a momma’s heart, each heartbeat is a heart-bleed because I loved and still love big. But instead of clotting off that heart-bleed with distraction, I must let it run. For it is his blood that first ran to give us freedom in His love and grace. It is his broken body that made us whole. And it is my broken heart, bleeding all red and love that is finding healing.

My healing doesn’t look pretty. You should hear me in my therapy sessions when I start crying. I choke things out, sometimes my breath comes into my lungs super constricted and wheezy. But I am reminded that in Jesus’s most broken state, all things were made new and He was beautiful. He did not distract from His mission. A mission to rescue his most dearly beloved… you and me.

So…

I’m going to put down the phone, yes even at red lights. I’m going to get comfortable with silence. I’m going to cry when I feel like crying. I’m going to hug someone when I feel like they need it. I’m going to walk into brokenness knowing I’ll want to run. And I’ll run to Him.  And I know I’ll be able to do it because it is HIS strength in me, reminding me that all is not lost or broken. And in fact, redemption is here and it is for all. Because that was His ultimate escape plan for us. 

Thanks for listening…

Bekah

Why the why matters

In our frequent travels back and forth between Ohio and California, I’ve run across many new faces. Sometimes we wind up conversing, other times not so much. In the conversations that do start up, it’s pretty much guaranteed that our story will come out. “Where are you all headed?” “Oh, you have family out there?” And so I begin to explain. “Rare, fatal disease. Travel for experimental treatment. Yes, its genetic. Oldest son just died from it.” (You know, it goes something like that, but with a touch of “Bekah” as my husband refers to it.) I can usually see the struggle and quarrel in their minds as they search for what to say next. Those questions are supposed to lead to small talk and I just hijacked the conversation and laid it all bare. As people process what to say, I hear a variety of responses. And I have been so blessed in these conversations, even though the other person often feels inadequate in the words they respond with. Honestly, I’ve been through it and I don’t even have adequate words most of the time.

But one such response that I hear often is, “I just don’t understand why”. And I’ve wrestled with that. Because, well, I know the answer. But it’s a monstrosity to tackle and it’s messy. And there isn’t this easy way out. But really, maybe we’ve got the why question in the wrong context all together. So… I guess I’m going there this time. And, by the way, I’m not going to pretend I’ve got this all figured out or that I have the depth of theological training to declare myself an expert in this field. So I’m praying God will be speaking through my words as I share vulnerably what I’m learning deep in my soul as I journey through brokenness.

So, a long time ago- okay, in the beginning of this world, God created Adam and Eve. He gave them so many incredible gifts, one of them being free will. God loved them deeply and created them in His image. He wanted them, in turn, to love him deeply and he knew the only way that relationship could be returned authentically would be if Adam and Eve chose to love him back. (Who wants to have to force people to love them in return?) So, he did what any good and loving parent would do and he established boundaries that held Adam and Eve safe in his love. Well, Satan, who had once been in the presence of God, turned against him and infiltrated the beautiful garden where Adam and Eve lived. He used deception to lead them to believe they could be better, do better, achieve better than God was allowing them to be. All they needed to do was eat some fruit from the tree of good and evil and their eyes would be opened. And so they ate. And their eyes were opened and their hearts were shattered. For God had protected them from the evil Satan wished to penetrate into them and what they had been protected from now ruled in their hearts and minds. They felt things they’d never felt before… Shame, brokenness, incompleteness, fear. And so, yes, they could see good and evil like God could, but they lacked one distinct disadvantage… They weren’t God. And so began this complicated world where good and evil battle and brokenness and sickness and pain and sorrow run rampage. And death… Yes, death happens. This world wasn’t supposed to have death. It was created for life! For joy! For pleasure, adventure, for community, for good! Not death.

This. Is. The. Why.

And how can I just settle with that? Be okay with that? And move on? And, not to mention, still love that God? The one who allowed this? When sin entered, death followed in and became certain. It touched my Titus. It touches everyone.

Everyone except one.

But wait… It actually did touch him. And in the most broken of ways. The very thing Satan eagerly planted in our hearts intending for it to grow strangling vines around us to suffocate, to cause our eyes to lose sight of joy and become lifeless grey- moving through the motions without really living, to feel pain and hit after hit from the circumstances around us; this very thing- brokenness- that Satan meant for eternal harm to our souls is the very thing God uses to reach us deep inside and pull us out.

Our God is so good. He didn’t bring this brokenness into the world, but instead of turning away, he became broken to be in our broken to help us find our way back to him even as we are broken. What the devil intended for suffering, God used for healing. He used the cracks in our hearts to breath life into places that would otherwise be barricaded and unreachable to give us the fullest of healing.

And, yes, that one person I’m talking about who was untouchably touched by death is Jesus. The one whom death conquered. Who was broken apart. Whose very life was suffocated out of him. Did he have to go there? No… But, remember, God is love. God loves you. And if you lost your child in a terrible storm, you’d go right through that storm to get them back to safety. And so, God sent Jesus, his son, to earth to rescue us in the middle of our storms of brokenness. And when he came here he brought life and hope and joy and promise and redemption. And then he showed us the great lengths he would go to save us… Yes, to even die. And then, 3 days later, he showed us the even greater lengths he would go to save us. Yes, even conquer death which is brokenness in its very final and depleted state. Even there, he would rescue us. Brokenness, because of his grace, was made into the most powerful tool for heart transformation and for good. Brokenness flooded Jesus’s soul because he wanted us. He loves us. And he was willing to go there for me, for you, for my sweet Titus.

This is why. This is why sickness and death happened to my son. But this is also why I’m not afraid to go there… To broken places and to live broken.

Just some of the blessings in the broken

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Passing on joy to other kids at our children’s hospital
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Our family has been so blessed!
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Family trip to Disneyland… choosing joy after a devastating diagnosis
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ONU Volleyball supporting us!
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CUI basketball T4T&E game
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CUI track and field T4T&E meet

When we hurt, the deepest need we have is for someone to be there for us. When Titus took his last breath here and in turn got to run to the arms of Jesus, we were left on this side ripped to shreds. We called our friends, Steve and Cathi, to come be with our family. Steve and Cathi ran into our brokenness. They held us and sobbed with us. They recognized the pain and let their hearts break too. They weren’t afraid to be cut by the razors that had just mutilated our hearts and they willingly stood with us and felt it all. This was love. This was the spirit of our God with us – feeling our brokenness. And in that moment, we had good brokenness. The kind that gave abundance. Gave joy. A deep, love filled brokenness. Look at Jesus’s scars.  Reflect on the cross that was carried and died on for you. And the scars on his body remained even after death was conquered and he was raised back to life. Why? Because he wanted you to know there is a great gift in brokenness and that is him and his deep abiding love for you. For you.  That is really the why… Why I will run full on into my broken where I know I will indeed break free.

Thanks for listening…

Bekah