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

Chasing Thankfulness

Lord, my brain is mush. I don’t know if it’s a coping skill or if it’s simply just the way it is in grief. I’m kinda numb. I’m here to chase thankfulness because I want to feel something. And, in gratitude, I find hope and joy.

It’s weird… It’s not hitting me that this Thanksgiving is any different than the last one. We had Titus last time though. And the fact is, this time we are missing our party of 4. We are checking in as -1 and I don’t really know how I’m supposed to react to that. I’m not worried about what others want or need to see from me… but I’m not sure what I’m supposed to feel to help my heart grieve… or process… or move forward.

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That moment when you have to sit and wait for the dreaded to happen… you stay and hold each other close.

It’s been more than two months since I’ve seen and held my boy. He left us. He actually had the strength and courage to leave us and face death. He held on as long as he could and I’ll always cherish those last days and moments. My heart held so much anguish, love, admiration for him in that final week. And now, my little boy is gone and perhaps what hurts the most is the admitting that here wasn’t the best place for him. That there – with you, Lord – is the best place. I know that. And it aches in my tightened constricted throat. In the quiet tears and nose gone runny. In the muscles flexing in my abdomen to keep the sobs to a minimum… Oh, I don’t know why I hold those back.

I cannot kiss the top of his head to show my love. I cannot sing silly songs and twirl him in an uncoordinated dance. I can’t even seem to dream about him… at all.

But what I can do… what I can summon the constricted throat and hot teary eyes to see and proclaim is thankfulness. One little piece of “Thank you” at a time.

Thank you for our neighbors who surprised us with flowers and cookies.

Thank you for time with friends who give us joy and provide a safe place to just “be”.

Thank you for sweet fruit from our tangerine tree.

Thank you for amazing smiles in the pictures Titus left behind that still ignite a smile in my soul.

Thank you for a husband who has chosen to love me through the ugly parts.

Thank you for the subtle lean of love I receive often from Ely.

Thank you for giving us such an incredible support system who, in this Thanksgiving season, we get to surprise a few with our tradition of Thankful Baskets.

Thank you for football, parades, and chocolate chip pancakes to enjoy with those close to my heart.

Thank you for a man who loves to cook holiday meals!

Thank for an opportunity to treat Ely in hopes his course of Batten will be halted.

Thank you for all our new Ohioan friends who surround us with love and support.

Thank you for redemption.

Thank you for love, compassion, grace.

Thank you for filling our empty buckets so we can pour them out again.

Thank you for power to live through brokenness with the Holy Spirit.

Thank you for holding my son.

Thank you for the way a yellow rose or sunflower gives me a gentle reminder that you love us and are with us through it all. That even when broken- to pour even more out and we will be full. That when we are on our last thread of our broken stem, we still know without a doubt that you are good, Lord.

And you are enough. 

And when that day comes that my stem fully breaks, and this earthly body is done, I will be with you, restored to beauty that reflects your glory… no more brokenness in sight. Just like Titus. Thank you for that promise, Lord. The very essence that is the fullest weakness and defeat in death actually becomes the vessel that fills us to the most completeness. Thank you for that kind of love.

We can rejoice, too, when we run into problems and trials; for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5

And here, as I chase thankfulness, I learn to just be. That right now, in this moment, this is ok. To be numb, to feel hurt, to give and be given to… it’s really living. All of it. And so I sit in it and I move in it and I rub my eyes clearer to see in it. This life… it is all a sign of your love. And I feel my soul showered free. Free from expectation. Free from idealism. Free from the need to hide. Here I am Lord… you get all of me. Not just the accolades, the accomplishments, but you get the anger, the cursing of this life that leaves my lips, the spewed words that come out in hate. All of me is all of you and because of that, I know that no matter what, I am enough because you are enough. And for that, I am most thankful.

Thanks for listening,

Bekah

The lost factor

 

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My beloved Titus,

I hope you are well. I miss you. And thats not a light-hearted sentiment… thats a soul-stirring, gut wrenching “miss”. Nothing feels like its in place now. You have gone away and now a big piece of me has too. I’m making it through the days, but many with tears just beneath the surface. So much of me is feeling incomplete, uneasy, always alert… like I’m in search of something thats missing because of the nagging feeling that I’ve lost something. Or someone. And I have… I lost you.

I know, I know… not entirely. Your memory, your joy, your eternal life… those things are not lost. They are alive and well. I’ve had glimpses of you through others. One person shared she had a vision of you playing with a lion, skipping across rocks in a river. You were having so much fun! You made your way back to your home where a feast was waiting for you and Jesus was your dinner guest. Hearing this from someone else made me so emotional. I took peace in it but it was also weird. And so unnatural to not be a part of your life now. To not know what you are up to. To not get the daily report from your teacher or brief paragraph of the day from your nurse. To not be by your side every moment, close enough to take care of every need as it comes up. To not be able to take in your laughter, your smiles, your bundle of energy. That was all so much a part of me, Titus. And its all still so ingrained in me, but you are inaccessible. This incompleteness in me makes me incredibly aware of my brokenness and as a result, so aware of the brokenness around me. It’s heavy. There is too much hate in this world, too much death, too much pain and sickness. And none of it is okay in my heart. All of it needs to be reconciled, but it feels too deep. Lets just be as honest as it gets… I am lost. I feel like a soldier returning home from war attempting to make sense of civilian life under a new me. So I stand here wondering whats next then?  If I, if we, must live in this pit of brokenness, what is next for me, for your dad, for your brother in that pit?

Titus, you made me smile so much. I still look at your photos all over our home and see old videos of you and I laugh and smile, feeling so much pride and joy! You are my son! And then it hits me that I can’t turn around and see you standing or sitting behind me. And honestly son, that still takes me aback. Because I truly can’t believe that soul of yours, that crazy ball of energy, was snuffed out of life here on this Earth. It doesn’t seem possible.  I left the house this morning because it was too quiet. Inside me the jagged edges of my heart were screaming for attention. I found myself beside a quiet bubbling stream, having a cup of coffee and writing this letter to you. It’s not very eloquent, but it’s all that is screaming inside coming out. It’s my honest search for the re-building I hope and pray God will do in me as I stand lost and broken, knowing and trusting that in this pain lies His power and love and grace.

I’ll end with this… a glimpse into the amazing memorial service held for you, son, just a few short weeks ago. These are the words God gave me to share in your service. I love you, son… And I’m so proud to be your mama.

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My baby has been gone for nearly six weeks now. I still hurt so bad. I miss him and have never felt so unable to fix and heal. My arms were meant to hold him, comfort him, love him and now they are empty. And the ache is worse than anything I’ve ever felt. I don’t understand why. There is so much conflict in my soul.

The relief that Titus doesn’t have to battle anymore.

The agony to not be able to hold him again.

The joy when I picture his huge smile and hear his infectious laugh up in heaven.

The gaping wound in my heart that will be open for the rest of my time here on earth.

The anger that my child had to even fight such a battle in the first place and had to face death at 6 years old.

The gratitude I have and pride I feel to have been his mom all of these 6 years.

“Dance with Jesus, my sweet boy…” those were my last words to him before they took him away.
I’m jealous. I would’ve loved to be right there with him, to see him transform whole again. To watch his ushering into eternity. When I think about Titus departing this world and starting life in Heaven, I don’t imagine my son waking up in front of a pearly gate with chubby baby angels flitting around. For some reason, I always imagine a huge train, operated by a Tyrannosaurus Rex engineer, pulling up beside him. The train is full, my gramps, my grandma, perhaps other kids who fought a similar fight, all on board to welcome Titus. And as the train stops in front of Titus, the train conductor steps out. His eyes, his voice, everything about this man is familiar to my son because he has been with Titus through his valiant fight here on earth. And before the words “all aboard!” can slip past Jesus’s lips, Titus runs (yes, runs!) headlong into Jesus’s arms. Jesus even perhaps cries happy tears as he sees my son restored to wholeness again- exactly as he was meant to be. Titus’s face mirrors Jesus’s own joy, his smile taking over his face, eyes sparkling alive and blue with a patch of brown on the left side. And just before he flings himself into Jesus’s arms, Titus does a celebratory somersault, effortlessly rolls back up to his feet and jumps into the arms of Jesus. Titus and Jesus jump onto the train where big Titus-sized hugs are given out to the community of love surrounding him. The t-rex takes them on a wild train ride, one that might resemble Roger Rabbit’s ride in Toon Town and Titus’s reaction being similar to what it was in that ride, clapping, stomping his feet and cheering at the top of his lungs with a vibrant smile on his face.

I have learned so much through my son. A few years ago, I decided to start writing a letter to my boys. I thought I’d add on to it as the years went by and when they graduated, they would have a letter of Gods story at work through them. I thought these letters would be for my boys… little did I know that through the letters I wrote to Titus, God would remind me of his redemption of all things broken.

In one letter, long before Batten entered our lives, I told Titus, “life hasn’t been easy for you. But even through your struggles you demonstrate pure joy! I keep using that word to describe you because I can’t explain my little Titus any other way. You are joyful! Titus, I want you to remember this… the joy you demonstrate daily to us, is God in you. We don’t have this joy out of nothingness. It comes from God and he is so good to give us this gift through the good and the bad.”

My next entry came after Titus started having seizures. We did not know what we were dealing with yet but we knew his road was difficult. I shared, “I want you to know, son, that even in the midst of your trials, you don’t have to wait until you feel better or things are all going normal to shine or succeed. You’ve already proven to us that perseverance is totally worth it and we can’t stop living life just because different issues come up. God is using your story to teach others about strength in HIM and to open my eyes to the brokenness around us.”

The final entry I wrote to him followed our move from Illinois to California. It was a huge transition getting all things medical, work, school, etc… re-established. But once again, God was so faithful and I needed Titus to know how much he was loved. “Titus, you are SEEN by God! He loves you. You have never been lost on him. We are nearing our 1 year anniversary of your first seizure and I am in awe of the way we have been carried through this time by God. God has created you to be amazing Titus and he will always be faithful to carry you through.” I was in awe then at the tribe that rose up around us and I continue to be in awe.

The countless ways we’ve been loved by God through all of you and thousands of others…. It’s so humbling because… well, really, who are we to receive such unconditional love? And it makes me wonder, why? Why are so many people joining us in this story? One of such pain and heartbreak?
God has shown me that Titus’s story is about so much more than a little boy fighting a Batten disease battle. It’s about all of you, too. Being invited into Titus’s story invites us into something so much bigger than ourselves. It’s being invited into brokenness. And, oddly, everyone craves that. Because that’s where we can be real. When we are willing to recognize that we are ALL broken, walls are torn down and the real work begins. This is the common ground on which all of humanity can meet. Brokenness under the shadow of Gods gracious wing can be life-changing, transformational. Healing.

Healed…. That’s what my little boy is today. And so, as his mom, I’m not going to get stuck on the why question, but rather I’m going to ask “what next?” God gave me the gift of being mom to an amazing little boy and he will be a part of our lives as much in the future as he was in our past.

Thank you, Lord, for this gift. Let us run toward this heartache and pain opening it up for you to breathe into as we watch you redeem. Turn mourning into dancing, ugly into beauty, and allow us to carry on the legacy Titus left behind of strength, perseverance, love and joy only found in you.”

Thanks for listening,

Bekah

Ride for Ely

Thank you, everyone, for an overwhelming response of love and support for our family. We were blown away by so many aspects of the Ride for Ely journey.

First, Rockey deciding to bike over 1,000 miles just to support Ely… wow. (And then he ACTUALLY DID IT!)

Second, the amount of money raised from people we know, people we have some loose connections to through mutual friends and then from complete strangers. God showed up in His compassionate, loving way through all of you. He confirmed through your actions that He truly means it when He says He will not leave us alone on this journey.

Third, we loved seeing the pictures, videos, and warm welcomes throughout Rockey’s journey.

Finally, the timing of it all is just jaw-dropping. We knew we had a big shot at getting Ely an experimental treatment that could possibly save his life. But the obstacles in the way were going to take us down fast. Just the amount of flying alone was going to rack up the $$ signs. And emotionally, to lose Titus in the midst of all this while being handed hope for Ely… it all seemed just too much to bare. But we watched God work through all of you as each obstacle was taken out. Flights? No problem. A place to stay in Ohio? No problem. Warm hugs when the pain gets too hard or the love is bubbling out? No problem. Prayer partners along the journey? No problem! And as Rockey biked into Darby, MT finishing the Ride For Ely, we were in Columbus, OH where Ely was just coming out of recovery from the surgery he needed to start the treatment. What a God-thing all of this and all of you are to us.

We feel the weight of the generosity… its heavy. We do not take lightly what has been done for our family. Time and time again throughout this Batten journey, you all confirmed with us that you were indeed still there even if life got foggy and we couldn’t even see our hands in front of our faces. You all have been exactly the kind of community Jesus always intended for us all to be. And to be the recipients of such love, such generosity… it is a heavy, heavy blessing. To receive and not be able give back equal value (in man’s eyes), we’ve had to learn the lesson of accepting those gifts even when we did nothing to earn them. And what comes along with that is a deep gratitude, thankfulness. And a very hands on lesson about what Jesus has done for all of us. He gave everything, right down to giving up his life for us even though we did nothing to earn that kind of love, advocacy, and deep relationship with him.

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And so, we find ourselves in a place where our hands are open and ready to receive, ready to give. We have been forever changed. We will whisper this truth and love in dark places and will shout it from rooftops. We take a step forward into this new chapter, our hearts broken and shattered but love shining through the destruction and mutilation, creating beauty and strength among the broken. We look to each side and see all of you, also fellow comrades of broken hearts. We all grasp hands because this becomes strength and we take that step together. This strength and love is tangible, palpable. The Holy Spirit is among, and in and intertwined throughout us. The power to transform and change is ours through the Holy Spirit. This is the journey we are on. This is what the Ride for Ely was all about. Thank you. Just… thank you.

To continue to follow our story (and we’d be honored and humbled if you did) find us on facebook @team4titusandely.

We also invite anyone who’d like to attend to join us for Titus’s life celebration on October 28th @ 7 pm at Mariners church MV in Mission Viejo, CA.
With all our love and gratitude,
Danny, Bekah, Titus and Ely

Yep. There it is. Grace.

 

Gut wrenching cries wracked my body. I couldn’t hold it in. “You are dreaming,” I told myself. But it didn’t matter because when I woke up, the dream transferred to a very real reality. A reality that told me this dream, or rather, nightmare, was in my future. The one that looked like a life without Titus. I wanted to stop the deep emotion and sorrowful cries, it really hurt to feel so big. But I couldn’t. It had taken over. Danny leaned over me, calling my name over and over. I felt his arms come around me, holding me, telling me it was ok. This is how I began my day today. A day that holds an anniversary I’d rather forget or pretend doesn’t exist, but with everything in me, I can’t forget. I tried to spend the better part of my morning as if all was normal, but tears were near the surface at all times because truth is, I remember. I remember the anxiety I felt the night before this day last year knowing we’d be marching in to the doctor’s office the next morning to hear the results they had discovered. And I remember the shock, grief, and loss that struck us immediately when we heard the word Batten for the first time on April 7th, 2015 at 11:45 in the morning.

Oh… what a year. My calendar year has been changed. No longer does my year start over in January. No, my year becomes complete on April 7th. On the first day we heard the word Batten. All year, I’ve looked back each day and remembered “a year ago today, Titus (fill in the blank)”. So many milestones gained and then lost. This has been the year of loss. The year Batten took over. Soon my “a year ago” comparisons won’t look so drastically different from the present, the now. It breaks my heart. I marvel at the way it is already April 7! How has this nightmare continued for so long? I should’ve woken up a long time ago to find my boys wrestling in the front room. To hear them singing in joyous chorus together. But that cannot be our life. Oh, how have I survived?

The other night I listened to Danny play a video of Titus. His little voice and dinosaur roar pierced my soul. I smiled on the outside, choosing to remember with fondness. On the inside, my soul was bleeding through the pierced hole, crying with pain. What a gift, this video, but what agony and… will I always have to feel that?

I mean really, guys, how have I survived? And more, thrived?

Is it because I’ve turned into a super hero able to rise above all emotions and circumstances- plowing through each day as necessarily as I must? I think we all know this answer… um, No.

Is it because I must have just been made for this sorta thing? This story, these circumstances? The ones that so many use to deem me “mother of all things they themselves could never survive”? I just naturally fit the role? Yeah…. No.

Is it because I must be in denial and stuffing away my feelings and emotions, refusing to face the truth? Yep, you guessed it… No.

I can explain my survival through one word.

GRACE.

Period.

That my superior God looks down at inferior me and chooses me- gives FAVOR to me!

That He allows my heart to open, not close. My eyes to see, not burn. Love to be experienced and felt, not shut out.

That He gifts me laughter, perspective, joy! Not bitterness!

That He holds me in the dark rather than hide from me.

That He allows me to see gifts all around.

In the twinkle of my son’s eye- there it is! A gift!

In the giggle that begins deep in the throat and explodes out, face lifting to the sky (because that’s the proper way to fully laugh with abandon)- there it is! A gift!

In the warm hug that holds me even after I’ve spoken bitter words, tried to drive it away. There it is. A gift.

In the teachers, nurses, and therapists who embrace my boys with love and one-of-a-kind care, giving it all they’ve got. A gift!

In the many Team 4 Titus & Ely events that have popped up over the year. The stories of people changed, loving BIG, allowing God to work through the boys and through others’ generosity. There is is! A gift!

In the calming, centered peace given at my kitchen counter as I sip on a cup of tea and talk to my God. There it is. A gift.

In the encouraging words on cards, scrawled out beautifully, giving us glimpses of authentic love. Yes, a gift.

In the community of love and pledged journeying together – a commitment to do life with us… No matter the cost. There it is. A gift!

In the tender snuggles and endless giggles. Yep, a gift.

The way I can fall apart mentally and still rise brave. A gift.

Yep. There it is. Grace.

It is all a gift of GRACE!

In no way did I, Bekah, do anything majestic or astonishing or particularly breathtaking to deserve acts of such unbelievable grace.

Who does that? Who extends grace like that? We selfish and limited mortals? Do we, on our own, create that kind of power? Of freedom? Of Love?

We could never… not on our own. We are only conveyors of God’s grace.  God’s grace centers me, grounds me. And I don’t want to miss it, this gift of grace. I could fool myself into believing the reason I have His favor is because of how much good I must do. That I’ve earned it. But let me tell you, I can’t even begin to live under that pressure. There is no amount of good deeds I could have done to earn what my God has given me in love, grace, mercy, wisdom, perspective. There is no ability for me to make enough good choices and to be nice, kind or giving enough to change the situation we live in. I cannot redeem this junk, this disease. I can’t. I can’t. But my God can. My God lives in an economy of grace!(Thank you Pastor Steve!) He works in an economy that looks like this: You owe, Bekah. It’s your heartbreak, Bekah. It’s your problem, Bekah. But… I’ll pay. I’ll redeem. I’ll hold you. I’ll stand beside you in the raging current. I’ll listen to you whether you praise my name or curse at me. I’ll be there to celebrate with you. I’ll be there to mourn with you. I’ll pay, Bekah. I’ll pay. 

For those who might think faith is just a part of my life and that perhaps it falls under the extra curricular or extra credit category, let me challenge you for a moment. It’s not just a piece of my life. It’s not a check mark on my to do list. It’s not a back-burner consideration. It’s everything. His grace is what gives me the ability to smile. It’s what keeps me in check when I say something against my fellow human. It’s what causes me to feel, deeply. It’s what gives me strength to keep getting up each day. It’s what gives me bravery and courage to encounter whatever is dealt out. It’s what brings me back to

love

thankfulness

joy.

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Experiencing a wonderful Egg Hunt for kiddos with special needs and their families! A gift!

This gift of grace is for me. And, it’s for you. And, on this difficult anniversary, where I cling to hope and redemption of all this pain, I pray you also feel the love of a good, good Father who loves you and me. I end with the face of my sweet firstborn and the blessing, or life verse, I pray over him every night.

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Titus, may the Lord bless you and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. -Numbers 6:24-26

Thanks for listening,

Bekah

Truth.

Hi Friends. It’s been quite the couple of months. Our Christmas celebration was absolutely incredible, but I had to recover. To be completely honest, it’s been hard as new things have begun to pop up in my mind of plans we will need to consider for Titus in the future. And, as much as I’d love to say I’m always kind and loving, my selfishness and defensiveness have gotten the best of me because it hurts to let my guard down when it means I might not ever get it back up. Ever get to that moment where your brain just goes on overload and then quits working all together? Pretty sure I’ve been there emotionally and spiritually. And then yesterday morning, God met me, like He does… as I sit to listen knowing full well my ears are plugged and I doubt I’ll hear a thing. And instead of speaking to me through my ears, He speaks straight to my heart. So I needed to share…

I know truth. It’s in my head and usually in my heart, but how steadfast is it? Does truth flee as soon as my anger flares? My physical needs aren’t met? My fears come alive?

I’m led to Matthew chapter 3- the temptation of Jesus. He was alone, hungry- like 40 days and 40 nights fasting kind of hungry, just in the beginning of His ministry, and along comes Satan tempting him in vulnerable places. I’ve read this passage of scripture so many times. I am always in awe of Jesus and His ability to say just the right thing back. This time though, God allowed me to see something new. Truth. The steadfastness of Jesus’ replies- He zoned in on the lies so fast and answered back with resounding truth.

I have so many days of being worn down. Might be the result of a sleepless night, too many doctors appointments in a week, not eating right, arguments with my husband. Or sometimes all I can say is that I’m spiritually exhausted. I’m run down. Satan has been beating me down little by little and there are days when the truth minimizes and my selfishness maximizes. Truth becomes the unfocused background in my picture of life and rather than turning my lens to see truth clearest, I focus on self. On my needs that aren’t being met. And then I start getting angry. About life, about the disease, about all that has come upon our family. But rather than turn to God to be filled with truth, with hope, with peace, I turn to my bitterness to be filled with depression, anger, and joy sucked away. The way I go about my day begins to feel lifeless. All I can muster the energy to do is watch the clock tick by. My God given gifts are frozen in time, something locked away that I can’t fathom accessing… too much energy, way too much. My boys get a shell of me. Going through the motions- detached because, well honestly, right now, to truly attach and feel takes more energy than I have and it’s too hard. What has become of this joyful spirit in me? Where are you now, God? WHERE ARE YOU NOW? I’ve yelled this so many times.

Always,

Always,

Always, my heart is wrapped in a quiet presence. I break. I’ve been standing “strong” for so long, but really that version of me is a hardened empty shell that symbolizes strength in the world’s eyes, but not in My God’s. My God is okay with emotion. My brokenness welcomes Him, it does not deny Him.

And his response to me?

“What do I ask you to put on each day, daughter?” Of course. I turn quickly to a scripture that has impacted my life over and over again. Ephesians 6:10-18. The first part of that scripture? “Put on the belt of truth…” I whisper. I feel the gentle reminder that I have forgotten to put mine on.

Truth: I am loved. Still. Always. Even in my ugly selfishness. Even in my drowning depression. Even when my smile doesn’t meet my eyes. Even when I check out of life and check onto Facebook. Even when I say hurtful things to my husband simply out of my own insecurity. I am loved! I let that take root in me. When I remind myself that I am loved in those moments, lies cannot weave around my heart.

Truth: He is faithful! I can look back in my life, even to yesterday, and tell you how He provided exactly what I needed to get through. How He continues to do as He said and has given me new perspective, a heart that feels deeply for others hurting, a love for my family that goes beyond love we are capable of on our own. He amplifies all that is good! I see my son do a silly dance in my own eyes and yes, it’s funny and sweet and I love it. But when I see through His love in me, my joy in that moment is bigger, more satisfying. And yes, there are usually tears (and I’m far too guilty of holding them back more times than not… I wonder where we’d be if we allowed ourselves to fully feel). But they are from amplified emotions because I see God in it all. He reminds me that He is here. He never left. He is good. He is redemptive. These are all promises that He faithfully keeps.

Truth: This world is not all there is! We fight a very real physical battle against Batten Disease in our life. It’s easy to focus on the disease, the constant care, the fact that my boys are not getting better. When I forget the truth that we are here temporarily, I get so caught up in the fear of death, of loss, convincing myself that if I’m not fighting for my child to survive in this world, I’m not surviving either. But what we experience here on this earth is not a temporary spiritual experience. It is a temporary physical experience because there is more! So much more for my Titus! For me! For you! And that is truth! Our reward for fighting the spiritual battle here is not death… It’s the crown of life! Life with no pain, no sickness, no depression, no anxiety. No Satan- you cannot have your way with me here. My son- he will gain when he leaves this world. That fear you are using to grip my heart even now, in this moment as I write, telling me I won’t survive his loss, I won’t have anything left, I’ll be an empty shell… well, you’ve tried that already. And, as tears begin to fall again, I’m telling you to back off and get out, in Jesus’ name! He has continued to prove that what you think ought to break me down has in fact done the opposite.

“Dear brothers and sisters, when trouble comes your way, consider it an opportunity for great joy. For you know when your faith is tested, your endurance has a chance to grow. So let it grow for when your endurance is fully developed, you will be perfect and complete, needing nothing.” James 1:2-4

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My little bundle of joy in the face of many hardships

Truth: I am not living these hard days to survive in this world. What reward is there in that? There will always be hardships. Always be struggles. I live in this world to discover more about my Father, His love and to love others as a result. And life we will gain! All of us!

When there is absence of truth in my life, I’m at the mercy of whatever my circumstances and emotions feed me. There is no strong foundation to filter them through. I am up, I am down. I have no control- no, in fact- they control me. No more. Hold on to truth! I am loved! He is faithful! There is more than this broken world! So, today, let my belt of truth glisten strong! Let my experiences today be seen through the truth of love, faithfulness, victory! I pray truth for your life as well, friends.

Thanks for listening…

Bekah

Fear Overwhelming

I sat upright in bed, springing forward with fearful power, my body drenched in sweat, and in my semi-conscious and confused state I had to take a moment to decipher what was in fact reality and what wasn’t.

Reality: My husband and both boys are tucked safely in their beds.

Reality: All is well. Time to go back to sleep.

I had, yet again, a nightmare about losing track of my boys when they were around a large body of water. And my nightmare always ended with me desperately trying to save one or both of my boys as they succumbed to the deep waters they had shown no fear to and it swallowed them whole.

And I repeated the nightmare. Night after night after night. We had just moved to California. Living near pools and the beach were a new thing to me. Playing in the water with my two young boys was a new thing to me.

Truth was, in the day, our playtime in the water was some of the best family fun! But there was always a fear eating away at me. Don’t let go! Don’t take your eyes off them. They could die under your watch and you are here to protect them!

The nightmares slowed down as winter came, the air cooled just enough to make trips to the water not as appetizing and we moved on to other activities. But for months that nightmare haunted my sleep, taunting me that I couldn’t protect  my kids enough, that no matter how alert to them I would be in my dream it was strangled out by a nightmare as my sons were drawn to dangerous waters and swallowed up again. Over and over.

Danny noticed. I was restless and tired during the day. I continually asked myself, why this intense fear of losing my boys and not being able to protect them? Even with my eyes full on them. In these nightmares, my voice never worked, my legs always moved too slow. I couldn’t save them. All was out of my grasp, my control. And it devastated me night after night, week after week.

Fast forward a few months to April 7, the day were were hit with a new reality. Our son had a disease that we couldn’t control and it would take his life somewhere between 6 and 12  years of age.

Fast forward another few months to June 25. Our youngest was delivered the exact same diagnosis.

Reality: My boys both have a genetic neuro-degenerative disease that cannot be cured or, at this point, stopped.

Reality: I cannot save my boys and they are dying.

Nightmare brought to life. Fear that disables. Depression that overcomes. Security uncovered as an illusion.

This disease has ravaged through Titus’s body. Quicker than we could’ve seen it coming. How did I miss it… the last time I’d hear him roar or see him tackle his brother? How do I live courageously, still the mama, the protector? But with no control?

Fear seizes. Fear cripples. Fear blinds. I can’t be here. Fear kills.

It kills beautiful moments. It kills the ability to see those moments in harsh reality. It kills moments of closeness in relationships. I can’t be here, fear. Take my place setting away. I’m leaving. 

I can’t sit in a complacent tolerance of auto piloting to fear.Yes, it’s the easy response. But it’s the cowardly response. And it’s not of God. I heard a new-to-me song a few months ago. On a day when the symptoms of the disease were coming out strong in Titus. A result of the degeneration happening as a result of bad genes that we can’t fix. Here’s the words to the chorus:

When you don’t move the mountains I’m needing you to move

When you don’t part the waters I wish I could walk through

When you don’t give the answers as I cry out to you

I will trust, I will trust, I will trust in You!

-Lauren Daigle

Today I will protect my boys by knowing full well who my strength lies in… who my trust lies in. And I will not return to fear today. I will look to Him, the one who knows exactly where this is all headed and promises goodness. And I will walk this path with Him no matter how brutal this world feels. Because today love and joy get to win. And we find beauty, not fear, in Him.

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Living in the beautiful moments no matter the circumstances
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Some of our beautiful moments where fear will not rule!

Thanks for listening…

Bekah