It’s all in the roots, part 2

There is a story I must finish telling, although, I laugh as I write that because the story is far from over. A couple months ago I shared with you all the vision God gave me of a blooming flower back in October of 2015. (Missed it? Click here to read it.) This wasn’t just any blooming flower though. This flower had a stem broken near off, holes beaten through the leaves. An obvious worn and tattered life had broken it down. One would expect this particular flower to wither and die, but the most miraculous thing was happening on the end of the dangling stem. The flower was blooming bright, full and yellow singing to the world of its glory… no, rather of God’s glory. And that glory-proclaiming was deeply rooted in the system of that flower under the ground, weaving it’s roots through others’ and holding it down in a place of nourishment, stability amidst chaos, hope in the shadow of death and redemption in the here and now and to come. There was beauty happening in the midst of the ugly and this bloom demanded others passing by to stop captivated by it’s impossible strength. This… this was the picture God gave me for the life we were journeying.

As I held on to this very clear vision, I found life in it. I knew we were blooming when it didn’t make sense and I felt a sense of joy through our days with Titus. We dove deep into learning to love big and live intentionally in each and every moment. We built and nurtured relationships because that was most important to us. Our community = our roots.

In November of 2016, just 2 short months after Titus went to adventure with Jesus and an entire year since God has inspired me with that vision, Ely came home with a pot of dirt from church. Of course, it spilled on the way home in the car and, of course, I had the worst attitude about it, huffing and scooping the dirt up, throwing it into the pot vowing to toss it when I got inside. Danny, our plant whisperer, told me to set it out on the patio and he was going to see if anything would grow. I set it out there, dusted my hands off and moved on.

Nothing happened those first couple weeks. It appeared Danny was watering dirt. Just dirt. Then one day this tiny little green bud popped out. Danny was so proud (he really can make just about anything grow). We watched this flower grow and grow until it opened up into this gorgeous flower. It’s color? Yellow. What a sweet treasure as we thought of our yellow-loving boy Titus every time we looked at it. It bloomed proud and perfect. Until one day Danny was out chopping wood for an upcoming camping trip. A splinter flung off to one side and chopped that bloom right off. We were so sad. We really grieved this poor flower’s sudden death. The beauty on our patio diminished on that day.

Fast forward to another passing Sunday, my sister and I inside having coffee and conversation, Danny and our brother-in-law Michael outside working on patio projects. We hear a knock on the back door and see Michael’s hand waving us over as he’s holding up a flower pot, face in the window. At first, confused I looked at him trying to figure out what he’s holding, but as I got closer, I felt God wrap me up in a giant bear hug as he whispered, “you are still beautiful because you are my child.” In Michael’s hand was that poor flower who met the death of splintered wood, but it looked different. It’s stem was broken so much it was dangling, and the leaves were a bit beaten up, but hanging at an angle just like the flower in my vision, was this incredible yellow bloom. It spoke through it’s beauty to my heart saying, “You can’t steal my joy.”

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I was in awe at this gift. For God to have reached down in such a way to plant such deep symbolism in my mind in 2015 and then actually create such a scene in my back patio in 2016… Wow!

I thought of all we’d journeyed through in that time. A brand-new, heartbreaking diagnosis for both our boys. The steep learning curve of learning to advocate. The fight to give my child freedom as Batten disease stripped it away. The firm grasp we held to living in the moment and adventuring as a family no matter what the conditions were. And then the “lasts” with Titus. The last time we’d celebrate Halloween, Thanksgiving, Christmas, Easter, his birthday with him. The last time we’d hear him laugh or see him smile. The last time we’d take him to school. The last time we’d watch him take a breath… a breath that was a last here on Earth, but was a launching pad to Jesus. Then planning a memorial service and celebrating Titus. And then our firsts. Our first chance at fighting against this disease and taking Ely to Ohio for surgery and infusions. All this, and so much more took place between these two events- my vision in 2015 and God’s creative outpouring of glory on my back patio in 2016.

And all this time, I’ve been so very aware of two things.

My brokenness.

His redemption.

 

And really, aren’t we all broken? When you look at this flower, you know what your broken stem and beaten leaves are. We all have them. But at the end of that broken stem is a redemptive bloom. One that reflects the unchanging beauty of Christ that is in ALL of us. Perhaps, when we look at the bloom, our stems and leaves become (dare I say it?) inconsequential? Not because they don’t hurt anymore… oh they do! But because we can see beyond it and know that hope is always worth holding on to because redemption is coming – and in fact – is already happening here and now.

Oh friend, may you see your bloom. May you know deep in your soul just how much Jesus loves you. I mean, really, really loves you. And, my friend? Hold on. Hold on to those hope filled roots, God’s strength and victory always before you, beside you, under you, and all around you.

Thanks for listening,

Bekah

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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.

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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

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

My birthday boy

Happy Birthday, my sweet Titusaurus!

My mind was swirling last night. So many memories playing like a roll of film from your first birthday to today. Titus, my heart… it aches. I remember you and I smile and even laugh, but then I cry. It’s complicated, this grieving and joy partnership.

I remember your first birthday so well. We had two celebrations that year. One just before your actual birthday so we could celebrate with the family in town visiting and the other was just you, me and your daddy. I slaved over these legit rubber ducky cupcakes. Man, they turned out awesome. (By my standards anyway… Ok, let’s just be real. That was actually the best “cake” I pulled off your entire life. It was downhill from there!)

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With a candle in the cupcake and all, your eyes lit up as you watched the rubber ducky cupcake in my hand sway closer and closer to your tray as we sang. You reached out for the cupcake and it promptly crumbled in your hands. Confused at first, you looked troubled at your hands, at the cupcake, at me. And then you started to cry. We are pretty sure you thought your favorite toy was broken. There was no going back from there. You refused to try the cake and I had to clean you up and get you down. Sorry buddy! (It was pretty hilarious, actually.) And then on your actual birthday, I decided you MUST try your birthday cake or it just wouldn’t really be your birthday. I took a few crumbs, yes crumbs, and set them onto the front of your tongue to just give you taste, sure that you’d be back for more as soon as you figured out chocolate was REALLY good! (It’s in your genes to love chocolate after all.) And in true Titus fashion, you delivered the unexpected. As you started to move it around in your mouth, you began to choke. Not because you couldn’t handle the few crumbs in your mouth, but because the texture of the cake really threw you off. I watched you smack your mouth trying to process the texture and then it happened. All my slaving in the kitchen making those homemade rubber ducky cupcakes was rewarded with a tray of vomit. Awesome. But you got those crumbs out, so you were good! Oh Titus, those are just the kind of memories that keep me laughing for years to come.

Your second birthday you discovered the joy of singing birthday cards. You had family surrounding you on this birthday too, everyone taking in your joy and wonder of the Mickey Mouse Hot Dog song coming out of a piece of paper. We laughed and laughed and laughed and you thought that was pretty cool too. And did you want any of your cake? Nope.

Your third and fourth birthdays were low key, but fun. We had friends over, played, and finally, FINALLY, you tried one of your birthday cupcakes. And you found that you do actually like chocolate cake. Whew! (Your silly brother still isn’t convinced.) I look back on those simple birthdays; I was never great at planning a big party. Most of the time, any plans that were executed were last minute. It was a good thing we had friends who were willing to fly by the seat of their pants and jump on those last minute invitations. I always had Pinterest-level intentions for your birthdays, but let’s face it… that is just not my gift. But fun was always had. For your 4th birthday, you got your first bike! You could’ve cared less about the actually biking activity, but you loved sitting on that bike and pushing the button making your Thomas the Train bike “choo choo”. I still remember standing out on the driveway that year as we surprised you with that bike. I can’t believe we only had two more birthdays with you after that.

Your fifth birthday was complicated. It was following your diagnosis of Batten disease. You had lost so many abilities you once had. But that morning you woke up so happy and energetic. You loved birthdays and found joy in calling your friends and family to sing happy birthday to them over the phone on their special days. I told you it was your birthday and you lit up. You couldn’t see much anymore, nor could you walk or speak words. But you felt the love. And once again, in true Titus fashion, you were one crazy, wild boy that day. You somersaulted, you flipped around in our arms screeching and laughing and begged for us to blow raspberries on you. You kept us smiling that day even though my momma heart ached that as you got one day older, that was one day closer to when I would no longer hold you in my arms. And that hurt.

Birthday number 6 held the same emotions. We had watched your body decline so much. Your birthday always falls on or near memorial day weekend and that day our church was holding a big picnic at the park. We knew it was going to be hard to take you out for too long, but wanted to give you two things you absolutely loved: being outside and being around people. When we arrived, there was an adorable cake decorated just for you buddy. Dinosaur and all. We laid out on the grass for a good part of the afternoon and enjoyed the company, the fresh air and the snuggles with you. You were so content and looked so peaceful. It was nothing extravagant, but it was good.

Today, I struggle. I think of how this birthday would’ve been if we still had you here. I know you’d never be able to celebrate your life here like you are in Heaven. And for that, I’m relieved and thankful and filled with hope that you are fully healed. But my mind wonders at what it would’ve been like to have had you without Batten Disease stealing you away. To have celebrated your 7th birthday as a typical 7 year old. I wonder at what your interests would’ve been, what you would’ve requested for your favorite meal, who your friends could’ve been. And I really, really hurt over not being able to wake you up singing a goofy version of happy birthday and kissing your cheeks and tickling you. So many emotions run through me in a single space of time; anger, joy, sadness, confusion, hope, and lots and lots of love. We started the day with the movie Land Before Time. I needed some dinosaur noises in the background. I’m drinking tea out of my Lion King mug remembering how much you loved that movie even after losing your ability to communicate. You’d laugh so hard when you heard the opening note of Circle of Life.

You find a way to be on my mind all the time. And I miss you, all the time. I know, without a doubt, your adventures are great in Heaven. And each day that passes is one day closer to getting to feel one of your big giant-sized hugs once again.

Happy Birthday, Titus.

Love,

Your momma

No time like the present

I walked into my living room after laying Ely down for nap and it was a disaster. My couch was all torn apart, pillows on the floor, everything in every toy basket seemed to be emptied all over, bringing the risk factor of navigating my living room to somewhere between high danger and impending doom zones. Blankets were slimy, wet and smelly and a stench of “poop” hung in the air.

Normally, I huff, take a breath and begin the clean up process knowing that in an hour or two when the little guy gets up from his nap, this is going on repeat. I know, I know… I should ask my son to help with the clean-up. I mean, I do…. Sometimes. It’s just not his gift. Titus, my oldest, now he could clean! That kid would clean up after me! And if I put something in the wrong place, he’d correct it. It didn’t take much to convince him to clean up. Ely, well… his gifting is to destroy things in Guinness Book of World Record fashion. Don’t get me wrong. I still try to instill these housekeeping values in him and encourage him to help mommy “ea up” as he says it. But there are days that takes more energy than the actual clean-up process itself. So today, I walked into this catastrophe lone soldier style. I took a look around to survey the damage and assess how long this would take. Those “nap minutes” are precious to me.

In my pause to look, I felt something well up inside me. Was that really what I think it was? Yep, thankfulness. Maybe it was because just a few hours ago, I was reminded yet again how little we are really guaranteed in this life and how dependent I’ve become on the hope and grace of Christ to be my enough. A text had come through on my phone from my dear friend who has begun the end of life stage with her sweet 6-year-old son, navigating painful, horrible and precious moments. I was rocked back on my heels of emotions as I replayed that very stage I just walked through with my 6-year-old son Titus, just a short 6 months ago. The disease ripping her son from her arms and requiring a far too early goodbye wreaked havoc in my household as well and we are learning to live in this place of pain and missing, yet holding on to the hope of redemption, wholeness and the promise to see him again someday soon.

“How long, Lord?” I asked out loud staring at the mess. “How long do I get to clean this up day after day?” I miss so much the mess Titus used to make. Yes, he helped clean up so that made it nicer, but really…. The dinosaurs meeting up with the trains on our ottoman, the cars lined up neatly in a row all facing the same direction ready to play out whatever imaginary adventure he had prepared in his mind. Duplos… everywhere. The bowl of cereal there to snack on that wound up getting crushed into the rug more often than not (oh wait… that still happens). Those moments with Titus are now just a memory and gosh, I miss them. So, I stared at the couch cushions resting haphazardly on the floor, the blanket that had been sucked on leaving sopping wet corners to hang. The stuffed animals sprawled everywhere, the dinosaurs hiding beneath the blankets, waiting for me to step on one of their spikes, and the other odds and ends that seemed so random. I’m not sure they even had a purpose for being out except as collateral damage in the 3-year old’s wake.

I stood up on the aforementioned ottoman and snapped a couple pictures. Yes, I want to remember this. My 3-year-old, Ely, isn’t guaranteed a long life either. I mean, who is really, but most of us expect it. But Ely is plagued with the same fatal disease that took his big brother at the age of 6 years old. And I know I’m given a gift because I can’t afford to take my days for granted; to huff and puff about cleaning up toys and messes. I embrace it because it is my son’s presence. He’s living and breathing here in my life right now and I don’t want to miss that. I would never wish this pain on any other mama. Ever. But I do hope and pray that my story helps others see the gifts in their lives that are wrapped up as inconveniences, frustrations, and unexpected stops. I don’t want to give anyone a guilt trip. I want to provide an avenue for a perspective shift. I almost sit down among the mess and let it be. But I don’t. I clean it up and every breath breathed holds a prayer for both my boys, for my husband, for me, for my friend. Such fragility, this life and yet, so vibrant that I can feel His spirit moving in me allowing me to glimpse His kingdom in the midst of such mundane things. Joy carries my soul, hope lifts it, and grace allows me to embrace. May we all be stirred in such places as our living room, among stinky, slimy blankets and sharp weapons disguised as children’s toys.

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