It’s all in the roots, part 2

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

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

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

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

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

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

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

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

My brokenness.

His redemption.

 

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

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

Thanks for listening,

Bekah

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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

Unlocking my heart

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

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

Schlumpy, much?

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

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

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

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

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

Joy is not a what. It is a “who”.

Who is my joy?

My joy is Jesus.

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

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

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

These are my hope and joy gifts…

 

 

Thanks for listening,

Bekah

My birthday boy

Happy Birthday, my sweet Titusaurus!

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

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

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

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

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

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

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

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

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

Happy Birthday, Titus.

Love,

Your momma

Hope on a broken bridge

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

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

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

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

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

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

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

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

Thanks for listening…

Bekah