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

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.

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It’s all in the roots, part 1

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

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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

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

Roommates

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

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