My should’ves

Featured by youcantstealmyjoy

As I journey through another holiday season, I’m starting to recognize things inside me for what they are. My first Thanksgiving without Titus made me feel like a foreigner. During days of celebration and time together with family, I would find myself drawing inward. This was not ever typical for me around family, but that year I was holding one less child in my arms and I never imagined I would be using subtraction when counting my little family.

This year I recognize it again. I draw inward and, I don’t know, I go quiet. I sit still. I am in the room, but not mentally present. I look like I’m just observing everyone but my mind has gone back a few years and is thinking. And I’m so absorbed in my thinking that I can’t hear when someone is talking to me in the present. I don’t hear the jokes. I don’t see the interactions and smiles and my husband usually winds up tapping my leg and asking if I’m okay.

“I’m fine,” I always respond. Because I am. I think so anyway.

This little inward reflection and absence in the present feels normal now and I think it’s quite typical for one who has lost. Just a few weeks ago at our family Thanksgiving celebration, I sunk into it periodically throughout our visit. Friday afternoon we set up a train and I had to excuse myself to go get dressed. I really did need to get dressed (yes I was still in pj’s in the afternoon), but I also needed to just drape myself across the bed and have a good cry. Because my 8-year-old son should be down there in the living room helping Grandpa set up the train so his younger cousins and brother can play with it. He should be getting an ornament with his latest favorite thing on it. He should’ve had the Santa hat on while we did an early Christmas, handing out gifts because that was his favorite. He should’ve, he should’ve, he should’ve.

What am I supposed to do with these “should’ves”?

Patience. Patience and pain. That is what I experience right now. Or, as one of my sweet friends eloquently puts it, living between grace and glory. Still living in these broken places, but with the promised guarantee of victory over all things broken and a love to hold us all the way through.

As I live greatly impacted in this shadow-land of brokenness, I catch glimpses of this Glory-Light. It’s a stark contrast, that Light and this shadow-land. There is something about it that is weaving through the darkness and making beautiful Light patterns. As the Light circles around and hits me, I realize it isn’t just Light. It has power behind it. And something else. When it strikes through me or when I reach out to touch it, it nourishes me. Not in the way food does, but in my soul. My broken soul.

Love. I think that’s Great Love. It feels like a superpower, because somehow this deep, dark abyss I experience, this broken shadow-land, is turned on it’s head and I see life springing out, I feel deep gratitude and redemption- and an overwhelming confirmation that all that is not okay will be gloriously okay.

Patience. Patience and pain. And superpower Light. I follow the Light and believe the Light because somehow He knows exactly what I need and so far, nothing else and no one else in this world – myself included – have quite figured that out, despite many attempts. But He does know what I need and I can feel it because I take that next step I didn’t know how to take on my own. I breathe that next breath I wasn’t sure would come because grief might’ve swallowed it up. I see that smile on my son’s face and have the courage to smile back and allow myself to live. I notice the slight breeze across my heart that is an awakening of the Spirit of Love in me that is fleshed out for my once-blind eyes to see and I know… I know I am not alone. I know this world is full of should’ves. But those should’ves haven’t passed us by. They are in fact “not yets”. I don’t count on my should’ves being fulfilled exactly as I expect or imagine them to be because my mind is far limited and my Jesus’s victory will bring more than I could ever know.

Fullness unexpected.

Redemption I was unaware of.

Victory over battles I didn’t have the comprehension to fight.

I see all through history, a big story-line of Great Love weaving redemption and grace throughout all our little broken story-lines and should’ves as the most epic rescue and love story of all time still to this day is unfolding. To be awakened to such a thing in this shadow-land is the greatest gift that could be given to my should’ves.

  • Ely and Grandpa playing with the Christmas train
  • Our sweet doodle “BoBo”
  • At the “Heroes in Plain Sight” Christmas party
  • Ely and his new dino blankey
  • Thanksgiving dinner prep

Merry Christmas, my friends. 

Thanks for listening, 
Bekah

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It’s time to let go!

Featured by youcantstealmyjoy

Many of you know we have been in transition over the last few months. This summer an unexpected opportunity to move back closer to family opened up. Truth be told, we weren’t looking for an opportunity to move or change jobs. We were content in Orange County. Ely had an incredible support system in every way, from school to church to his treatment site. Danny had been working hard over the last few years to build a strong program at Concordia and had an incredible coaching staff and team coming in to the new school year. I was searching my heart for where God was calling me, and I suppose that side of me still felt quite open ended leading up to this new adventure. But, all in all, we were settled. Invested. Building a life there and then this door opens… not a quiet, discreet door where we’d have to be searching for it otherwise we’d miss it, but one of those loud creaking doors that wake you in the middle of the night when they are opened. There before us was a door wide open for us to take a step through. Into what, exactly? Idaho, at first glance, but we weren’t really sure what that would look like. And this, my friends, is the faith walk we’ve been on over these past months.

The decision to move away from stability to a new unknown, albeit to a place we had once called home, was equivalent to moving from a boat that we knew was held together by strong, healthy boards and could survive a storm to a boat that looked old, worn, and leaky and trusting that boat could hold up under what was ahead. California was stability, Idaho was a leaky, old boat. I can’t tell you how many times Danny and I looked at each other like we were crazy to even consider such a plan. But something continued to draw us forward… perhaps it was the loudness of that creaky door opening. We couldn’t help but take notice.

We often walked in the evenings after Danny would get home from work. The late summer evenings are beautiful in Southern California. We were out walking, discussing again whether we take the adventure on a leaky, old boat or perhaps call that insane and stay put in certain stability. Something kept drawing me to that old boat telling me there was more to it than my little eyes, my perception, were seeing. On our walk, I was having a silent conversation with God that went about like this:

Me: “God, I know this whole thing is another way to strengthen my faith. I know that you will use us wherever we are, but I feel like I need to work so hard to figure out exactly what that perfect plan is. My heart tells me to trust that you will reveal it to me when you are ready and give me peace about it but my mind tells me to try harder to find where you are revealing such a plan so I don’t miss it. This is crazy. I feel crazy! Do you realize what has to come together in order to move back to family? It’s impossible… okay, maybe not impossible, but highly improbable. And yet, I desire it and feel SO CRAZY for entertaining this idea! But you are calling us there, aren’t you? Why can’t I let it go if you aren’t? Is this your will God? This is really hard to figure out and understand. I need you to tell me what to do!”

And when I finally finished with my monologue, God spoke to me through one of my love languages… Disney movies. Specifically Finding Nemo. Clear as day, the scene where Marlin and Dory are inside the whale and Marlin is hanging off the whale’s tongue for dear life pops into my mind. All I hear is Dory’s voice saying, “IT’S TIME TO LET GO!”

My head tilted back and laughter came rolling out of my throat which got a “weirdo” glance in my direction from my husband. A sense of relief flooded through me, like I just needed permission to stop trying to figure it all out. My job was to let go. To step out onto that leaky, old boat and know that I didn’t have to bring all the safety gear on board along with a step by step evacuation plan if all goes awry. And it was in that shift, I no longer saw a leaky, old boat. I saw stability. Not in programs or people, but in my Abba Father. His stability would go with us whether we stayed or made the jump to Idaho. I felt permission in that moment to see with new eyes. I had been blinded by worry and anxiety of details that needed to come together and ran into all the what-ifs. The leaky, old boat – if you will. I was terrified of sinking and the impact it would have on my little family. But what if, in the sinking, we find that we can actually breathe under water? What if my perspective of the leaky, old boat is all wrong and prevents me from an adventure to actually see the Kingdom of Heaven at work here and now? Knowing that all the “problems” I could imagine happening could never threaten my good, faithful, steadfast and victorious God suddenly cleared my blind eyes to see anew. What could I possibly fear when I put my eyes on Him? And how could I not run full throttle onto that leaky, old boat for an adventure by His side?

Herein is where I find myself- on this new adventure. I have watched God faithfully go before us. And daily I have to remind myself that I haven’t passed him by; no in fact, he still goes before. He hasn’t left me on that leaky, old boat to fend for myself and my family. And every day is an opportunity to let go of what I think I know and allow him to open my eyes to what He is doing. It’s a giant perspective shift and an acceptance that what I see before me isn’t the whole story and in fact, truth laid out in front of me might be quite different than my initial observation.

For all of us, each day is a day to let go. Perhaps in the process of letting go, all the worries and grievances that were clouding our vision with monstrous fear can clear out so we can see.

And I mean really see. And in turn – really live unabashed in adventurous Love.

Thanks for listening,

Bekah

It’s all in the roots, part 2

Featured by youcantstealmyjoy

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.”

Untitled design (3).png

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

PS. If you want to hear more of the story, I had the opportunity to speak at our home church in California. Click here to have a listen. I pray you feel Abba Father’s Great Love for you.

It’s all in the roots, part 1

Featured by youcantstealmyjoy

On October 17, 2015,  exactly 11 months before we would say ‘goodbye for now‘ to Titus, I wrote a journal entry that I haven’t yet shared on my blog, until today. This has become quite a story, one that I will share in parts because it’s a bit long. Welcome to the first chapter.

What preceded this particular journal entry were writings that both cried out to God knowing my own strength and ability would never get me through; that I desperately needed him. And there were entries thanking Him for giving me beauty to behold, joy to feel. This was an intense time in our lives. On this particular day on October 17, I was in awe at how devastating a life we’d been handed and simultaneously how full of joy we were. It didn’t match, but gratitude spilled out of me and so did these words…

Wanna know why I can’t be plucked from the garden of joy? When that hand of hate, jealousy, anger, bitterness or selfishness tries to pull me out, my roots cling tight, dive deep, wrap around the other roots growing deep. One tries to pull my flower out, but they really have to contend with a mass of roots that have intertwined below.

This web of deep strong roots is a result of God’s love. He is deep in us and when we face a storm on the surface- my leaves and petals taking a beating no flower could appear to endure- he holds tight to my roots, weaves them through the roots of other flowers. As the storm goes on, I don’t wilt. I don’t become uprooted. I firmly stand my ground in the soil of LIFE. And others around me too! God has weaved us together and we will stand strong, united and beautiful in the storm. We will add radiant colors in the gray skies, sweet smells as bitter rain comes down because our roots are

d

e

e

p.

It doesn’t matter what happens on the surface – deep is where our roots are pulling nutrients. HE is providing everything we need to stay up.

But… we do look beaten.

Save us, Lord!! You see our plight and you cling tight. I might feel this unimaginable storm, but you keep together the most important part of me – my soul. When I, a summer flower, bloom in the dead of frigid winter, people wonder, How?

My roots….

My roots are held deep in love and warmth, surviving and thriving in unthinkable conditions. You give life that doesn’t make sense. It appears impossible to live in such a way, a bloomed flower in dead winter. Only a good, redemptive God can give that kind of life. Thank you for deep roots in you, God. For clinging to me deep in my soul so I can survive. Thank you for winding my roots around such strong, wise roots of others. You have won and will continue to win in my heart. Nothing can hold you back. So please Lord, radiate strong from my being, through my broken stem and beaten leaves right to my new and beautiful bloom. Both simultaneously happening on one flower at the same time, demonstrating my broken stem as my weakness and a new bloom on a broken stem as proof that you take brokenness and make it SO beautiful. Thank you, Lord. I love you. Bloom beautiful in me despite my ugly broken stem.

And then I drew this picture next to my journal entry…. (disclaimer- I do not and have never claimed artistic talent. My art comes through my words, definitely not through drawing, but it’s part of the story so here we go… no judging! Ha!)

Journal drawing

This symbolism has stayed with me. As I have felt the faith community surround us, I picture our roots all held together. As I smile authentically, in a moment where perhaps fearful tears would make more sense, I picture my bloom. When I cry, curled in a ball on the floor unable to do one more thing that day, I picture my broken stem and beaten leaves. And then I remember my roots. And I get up and keep going.

“I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. And may you have the power to understand, as all God’s people should, how wide, how long, how high and how deep his love is. May you experience the love of Christ though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might as or think. Glory to him in the church and in Christ Jesus through all generations forever and ever. Amen.” Ephesians 3:16-21

To be continued…

Thanks for listening,

Bekah

Unlocking my heart

Featured by youcantstealmyjoy

I bent down to put the tracks away and melted into a puddle right then and there. I’d put these tracks away many a night but they were only ever out as a result of a meltdown or a half-hazard dump as Ely made his way through the toy bins and boxes, not slowing down to actually play with anything, his only goal to seemingly make a big giant mess.

But tonight was different.

I wasn’t putting away tracks that were sprawled all over my living room, thrown in anger or carelessness. They were pieced together in a uniform track with bridges on either side, an engine and two cars connected and resting at the bottom of one of the bridges. It was as if I had jumped back about 3 and ½ years in time and Titus had just laid there playing with them for 45 minutes, insisting I sit across from him and take my turn on half of the tracks each time the train came around to greet me, always with his “choo choo” as he passed it off.

I put each track away exactly as I have for years, still held in the same worn-down cardboard box they came in from Ikea and I feel a Holy Moment approach. I can’t quite define what it is, but somewhere deep within, my Abba Father is unlocking a piece of my mama heart. I can’t hold any of it in so tears flow, but not just because of my deep missing, but for the deep rejoicing too.

You see, tonight, Ely was the one who had insisted the train tracks get set up. And that I sit across from him and take my turn each time he rolled the train down the bridge and around to me. He passed them off to me each time with a soft “choo choo”. I’d kept these tracks out in the living room long after no one was interested in playing with them because they held such a sweet and tender memory of time spent with Titus. They have always frustrated the heck out of Ely so I stopped trying to put them together and drawing him in to play with them; as much for me as him because I got tired of dodging flying wooden tracks when he would scream and throw them. (It does not feel good getting pelted by wooden Ikea train tracks… just saying.)

And then suddenly he wanted to play. And play. And play. I was on guard because…. well, flying tracks! But none came hurling toward my head. The train would get derailed and I hurried to help him to avoid any eruption, but none came as he calmly tried his best to place them back on the track. We played, with soft “choo choos”, taking turns, saying “wheeee!” down each of the bridges and giggled when the trains derailed. Bed time came and I reluctantly paused to move on for the night.

As I cleaned up around the house and found myself on that floor in the midst of that Holy Moment I acknowledge the past several months have sent my heart into lock down. I know this already so it’s not a new revelation to me, but I didn’t anticipate a set of train tracks to be the tool to begin unlocking it again.

I don’t have to always stand waiting for the ball to drop, for the next emergency to happen, to record and observe all that is going wrong so I’m not caught off guard.

I can softly choo choo and giggle when things get derailed. I can breathe in those moments and allow my heart to feel them. He reminded me that right here is beauty. Right here He- my friend and companion- my God is here. And He just gifted me. I’ll take that kind of Mother’s Day gift any day and am so thankful I didn’t miss it this time.

Thanks for listening,

Bekah

Just breathe

Featured by youcantstealmyjoy

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

Remind me again, please

Featured by youcantstealmyjoy

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.

November 16, 2014. Kite flying. A memory forever written on my heart.

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?

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

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