Schlumpy, much?

Featured by youcantstealmyjoy

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…

 

Memory bears gifted to us. Made out of Titus’s clothes.
Fun at Goofy’s Kitchen
My “joy-boy”
Look at me, mom and dad!
fun at hippotherapy!
always an adventure

 

Thanks for listening,

Bekah

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Roommates

Featured by youcantstealmyjoy

The first year of loss consumes me. Every experience held has a deep painful reminder that one certain joy-filled boy is physically absent. I am overly aware of the grief residing in me and the effect it has on nearly every interaction, every experience, every day I live through since we got the diagnosis, watched loss happen in front of our very helpless eyes, and ultimately said a painfully separating good-bye-for-now to Titus. Each important date, each “anniversary” feels like it is lurking around the corner ready to strike my heart in a deep, painful way. Yet another reminder of what we have lost. Life, for me, has become trying to understand how all these broken pieces now fit together.

It’s messy and painful and sometimes hard to find the way. Something will come  along and shatter part of me all over again and I realize the puzzle will never go back together whole. Rather, it will have juts and cuts, and holes and slashes. And the only whole I can cling to is the Holy Spirit in me. He is what fills – no, shines! – through the damage. God begins to weave back together a beautiful mosaic, but it is not without pain. It is also not without joy! The two reside together in their home in my heart and soul, learning to become roommates. They couldn’t be more opposite, more conflicting! The struggle is in finding a way to live balanced – not where I ignore them, but where I allow myself to feel both and see, with Jesus eyes, the redemption at hand here in us, in the world around us, and in the wholeness that has already happened in my son.

There used to be a time in my life where things just sort of always worked out. Everything from jobs, big moves, and friendships came together exactly as we needed. I remember back to when I was standing on my back deck in my home where  I grew up. I was 15. I was declaring my love for God. I told him my life was his. All His. I went on to tell him I wanted to shine bright for him. I still remember this moment so distinctly because He spoke in me. I remember the feeling… it was like a quiet booming that was ricocheting around inside me resonating not just in my ears but into my heart and deeper still, into my soul.

“See that star?” He said. I looked up. I saw it… the brightest star in the sky to my visible eye. “You will shine brighter than that star for me, daughter.” In that moment, in my 15 year old mind, I felt chosen for great things. Pain did not cross my mind, not once. And, looking back, I wonder if it ever crossed my mind what a huge commitment that was when it came to trust Him, even though __________ (fill in the blank).

Even though I would struggle with depression to the point of wanting to die in college.

Even though once I entered the real world and the real job force, the days got hard and I didn’t like doing the hard stuff.

Even though we would pick up and move from security and established comfort zones multiple times.

Even though family relations were sometimes difficult to manage.

Even though we would have babies who taught us what sleep deprivation was.

Even though our boys would be diagnosed with a rare and fatal disease.

Even though we would hand our oldest son back to Jesus at the age of 6.

Even though there would be no reprieve from the rare disease world as our youngest would battle the very same Batten battle his brother was just freed from.

Even though we now have to live in a world seen now through a film of grief, welcoming it as a new friend.

Even though… I will trust in you God and you have all of me.

You see, as I fast forward through my life, I see God using me, using us. The world sees His goodness in this dark time. This world is broken, but there is still hope for redemption. Not just future redemption but redemption right here, right now.

So, while I live in this new world of grief-lined perspective, joining hands with my grief is hope. As the sorrowful streams of grief rise up, around me hope says, “Here I am. Ride that wave, feel it… I won’t let go.”

When grief reminds me of what I’ve lost, hope reminds me of what I still have to gain.

When grief shreds my heart to a million pieces, hope takes those pieces and welds them together in a new and beautiful fashion.

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Fun with water out on the back patio
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Taken right by where Danny and I got engaged over 12 years ago! (The exact spot was under water!)
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Ely having so much fun at grandpa and grandma’s house!
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On our visit to the beautiful Red Bridge Farm in Washington!
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Ely celebrating his “graduation” from the clinical trial for the enzyme replacement therapy program at Nationwide Children’s Hospital in Columbus, Ohio. (He continues treatment at home now.)

Grief and hope, pain and joy. I grab on to both sides. Grief and Pain are the reality of this world… Hope and Joy are the reality of God.

Thanks for listening,

Bekah

It was you

Posted on by youcantstealmyjoy

Two years ago… It was two years ago we got a second devastating diagnosis and were told Ely was also going to have to fight the same disease his brother was fighting. I had sunk into a puddle of all kinds of mess that day trying to absorb what that news really meant and how we were supposed to survive. I remember Danny and I calling all the family all over again, delivering the news all over again. Texting friends to say our greatest fear was real… that BOTH our boys were affected. And then Grandpa Eddie got home from work (we were in Idaho on vacation visiting when we got the call) and offered Starbucks Frappuccinos.

Yes, please.

And we took a brave step forward, fraps in hand. And I learned the gift of living in the moment; truly absorbing what God was doing in and around us right then and right there, a place I called “This Now” land.

I can’t believe we are a solid two+ years into this Batten journey. Many have described our family as brave, courageous, joyful, inspiring, warriors. I don’t write this list to toot our horns because even as I have journeyed this crazy way, I can’t muster up the energy to embrace those descriptors as something I have managed to accomplish. As I pondered on the last two years and how far we’ve come since Titus’s diagnosis (April 7, 2015) and Ely’s (June 25, 2015) I am in awe at how far we’ve been carried.

I can’t imagine a more complete and all encompassing community as the one we’ve experienced these last couple years.

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It was you who created a service project centered around supporting our family and dropped off special gifts for the boys, gift cards, all kinds of yummies, and words of encouragement that helped us along for months and months on end.

It was you who chose to care for my boys, whether it was a couple hours or many many days, whether it was just that one time we really needed someone or a steady hand in our home.

It was you who prayed and prayed and prayed and prayed. And when there was nothing else you could do, you continued to pray.

It was you who uprooted your lives and moved here to be with us, to support us, to love us.

It was you who sent consistent messages of encouragement through facebook, texting, notes in the mail and phone calls.

It was you who made sure I got “mom time” through coffee dates, treating me to hair cuts and color, massages, facials, or allowing me quiet time to just go “be”.

It was you who helped Danny and  I continue to prioritize our marriage.

It was you who told me (not asked) that you were going to be paying for housekeeping so I didn’t have to think about how to find time and energy to deep clean my toilets.

It was you who went grocery shopping for our family and provided meal after meal after meal.

It was you who sent special deliveries, and dropped off flowers or sweet treats just to put a smile on our faces.

It was you who helped us celebrate our last Christmas with Titus really big, gave us Disneyland experiences as a family, gifted your time and talents to give us memories of our boys through photographs, blankets, and boat rides.

It was you who invited us over to just enjoy being together and allow us laughter and reprieve from the seriousness of our daily life; to gift us your friendship.

It was you who donated whether it was to help us purchase our van, make 13 round trip flights to Ohio, or manage the daily financial burden that a rare disease brings upon our family.

It was you who did lemonade stands, sold baked goods, held garage sales, auctions, played sports games dedicated to our boys, ran 5ks to support us, rode 1300 miles on your bike, hiked mountain peaks, all to join hands with us in this journey.

It was you who helped us through a refrigerator and washing machine crisis.

It was you who gave Titus and Ely gifts of laughter and joy as you engaged with them doing silly things like karate chops, raspberries, monkey noises, train whistles and dinosaur roars.

It was you who didn’t shy away from the pain of that last week with Titus, but poured into our home to say goodbye, to bring an entire “Titus parade” in yellow to our front door, to hold our son, to shed tears with us, to sing praises to our God with us that filled us with strength and hope, to pray around us, to remember with us.

It was hundreds of you who showed up to celebrate Titus in the most beautiful memorial service we could’ve hoped for. Jesus sure showed up there.

It was you who took us in as complete strangers to stay in your home every time we traveled to Ohio for treatment and let us use your vehicle. We didn’t stay strangers… no, now we are family.

It was you who didn’t have to befriend us, but each time we journeyed to Ohio we were greeted by your smiles, love and support in so many ways that filled us in a most exhausting time of our lives.

It was you who found yourself on this very same Batten journey and allowed us to feel our heartbreak together and find hope together.

It was you who created a safe place for us to be vulnerable, angry, joyful, inspired, confused, burdened.

It was you who advocated for us through the FDA approval process, who allowed Ely in to the trial, who fought long and hard to open a site locally.

It was you who care so wonderfully for my son at each infusion with a smile on your face and joy in your soul. You give hugs, a listening ear, and even soy lattes.

It was you who taught my boys in your classrooms, but you did more than teach. You loved and loved big. They felt that love and so did we. Always.

It was you.

I only stop here because I know this post is getting quite long. I think I made my point. You may wonder how joy keeps bubbling to the top, even as tears of pain spill over my eyes… Jesus has given us the most incredible gift in all of you.

Generosity at this level can feel heavy. But through this journey, we have changed. We’ve learned to say “yes, please” and “we need you”. As a result, our hearts have burst open to be filled with enough. Enough to do this journey courageously. My prayer is that it’s enough to spill out onto others who need the same thing we needed and continue to need; love, support, prayer, and hands locking hands saying “you are not alone”. Oh how I no longer live to check off a bucket list, but rather to pour my bucket out even as God is filling it so others experience the goodness of God and his love for each and every one of us.

To you, thank you. I’m forever grateful to journey this with you as I share the words on my heart through this blog. Our journey is no where near over and I continue to dream of what God will keep doing to redeem the pain and heartache of this life. I’m excited for what is to come even as we live in great uncertainty with Ely and the grief of saying good bye for now to Titus. Uncertainty and grief do not equal hopelessness, but rather I have hope and great anticipation for what is to come. Thanks for journeying with us.

Thanks for listening,

Bekah

 

My birthday boy

Posted on by youcantstealmyjoy

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

I am a mom

Posted on by youcantstealmyjoy

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

Posted on by youcantstealmyjoy

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.

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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

No time like the present

Posted on by youcantstealmyjoy

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