It’s all in the roots

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

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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

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

Why the why matters

In our frequent travels back and forth between Ohio and California, I’ve run across many new faces. Sometimes we wind up conversing, other times not so much. In the conversations that do start up, it’s pretty much guaranteed that our story will come out. “Where are you all headed?” “Oh, you have family out there?” And so I begin to explain. “Rare, fatal disease. Travel for experimental treatment. Yes, its genetic. Oldest son just died from it.” (You know, it goes something like that, but with a touch of “Bekah” as my husband refers to it.) I can usually see the struggle and quarrel in their minds as they search for what to say next. Those questions are supposed to lead to small talk and I just hijacked the conversation and laid it all bare. As people process what to say, I hear a variety of responses. And I have been so blessed in these conversations, even though the other person often feels inadequate in the words they respond with. Honestly, I’ve been through it and I don’t even have adequate words most of the time.

But one such response that I hear often is, “I just don’t understand why”. And I’ve wrestled with that. Because, well, I know the answer. But it’s a monstrosity to tackle and it’s messy. And there isn’t this easy way out. But really, maybe we’ve got the why question in the wrong context all together. So… I guess I’m going there this time. And, by the way, I’m not going to pretend I’ve got this all figured out or that I have the depth of theological training to declare myself an expert in this field. So I’m praying God will be speaking through my words as I share vulnerably what I’m learning deep in my soul as I journey through brokenness.

So, a long time ago- okay, in the beginning of this world, God created Adam and Eve. He gave them so many incredible gifts, one of them being free will. God loved them deeply and created them in His image. He wanted them, in turn, to love him deeply and he knew the only way that relationship could be returned authentically would be if Adam and Eve chose to love him back. (Who wants to have to force people to love them in return?) So, he did what any good and loving parent would do and he established boundaries that held Adam and Eve safe in his love. Well, Satan, who had once been in the presence of God, turned against him and infiltrated the beautiful garden where Adam and Eve lived. He used deception to lead them to believe they could be better, do better, achieve better than God was allowing them to be. All they needed to do was eat some fruit from the tree of good and evil and their eyes would be opened. And so they ate. And their eyes were opened and their hearts were shattered. For God had protected them from the evil Satan wished to penetrate into them and what they had been protected from now ruled in their hearts and minds. They felt things they’d never felt before… Shame, brokenness, incompleteness, fear. And so, yes, they could see good and evil like God could, but they lacked one distinct disadvantage… They weren’t God. And so began this complicated world where good and evil battle and brokenness and sickness and pain and sorrow run rampage. And death… Yes, death happens. This world wasn’t supposed to have death. It was created for life! For joy! For pleasure, adventure, for community, for good! Not death.

This. Is. The. Why.

And how can I just settle with that? Be okay with that? And move on? And, not to mention, still love that God? The one who allowed this? When sin entered, death followed in and became certain. It touched my Titus. It touches everyone.

Everyone except one.

But wait… It actually did touch him. And in the most broken of ways. The very thing Satan eagerly planted in our hearts intending for it to grow strangling vines around us to suffocate, to cause our eyes to lose sight of joy and become lifeless grey- moving through the motions without really living, to feel pain and hit after hit from the circumstances around us; this very thing- brokenness- that Satan meant for eternal harm to our souls is the very thing God uses to reach us deep inside and pull us out.

Our God is so good. He didn’t bring this brokenness into the world, but instead of turning away, he became broken to be in our broken to help us find our way back to him even as we are broken. What the devil intended for suffering, God used for healing. He used the cracks in our hearts to breath life into places that would otherwise be barricaded and unreachable to give us the fullest of healing.

And, yes, that one person I’m talking about who was untouchably touched by death is Jesus. The one whom death conquered. Who was broken apart. Whose very life was suffocated out of him. Did he have to go there? No… But, remember, God is love. God loves you. And if you lost your child in a terrible storm, you’d go right through that storm to get them back to safety. And so, God sent Jesus, his son, to earth to rescue us in the middle of our storms of brokenness. And when he came here he brought life and hope and joy and promise and redemption. And then he showed us the great lengths he would go to save us… Yes, to even die. And then, 3 days later, he showed us the even greater lengths he would go to save us. Yes, even conquer death which is brokenness in its very final and depleted state. Even there, he would rescue us. Brokenness, because of his grace, was made into the most powerful tool for heart transformation and for good. Brokenness flooded Jesus’s soul because he wanted us. He loves us. And he was willing to go there for me, for you, for my sweet Titus.

This is why. This is why sickness and death happened to my son. But this is also why I’m not afraid to go there… To broken places and to live broken.

Just some of the blessings in the broken

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Passing on joy to other kids at our children’s hospital
christmas-thankyou
Our family has been so blessed!
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Family trip to Disneyland… choosing joy after a devastating diagnosis
onut4t
ONU Volleyball supporting us!
t4t
CUI basketball T4T&E game
t4t2
CUI track and field T4T&E meet

When we hurt, the deepest need we have is for someone to be there for us. When Titus took his last breath here and in turn got to run to the arms of Jesus, we were left on this side ripped to shreds. We called our friends, Steve and Cathi, to come be with our family. Steve and Cathi ran into our brokenness. They held us and sobbed with us. They recognized the pain and let their hearts break too. They weren’t afraid to be cut by the razors that had just mutilated our hearts and they willingly stood with us and felt it all. This was love. This was the spirit of our God with us – feeling our brokenness. And in that moment, we had good brokenness. The kind that gave abundance. Gave joy. A deep, love filled brokenness. Look at Jesus’s scars.  Reflect on the cross that was carried and died on for you. And the scars on his body remained even after death was conquered and he was raised back to life. Why? Because he wanted you to know there is a great gift in brokenness and that is him and his deep abiding love for you. For you.  That is really the why… Why I will run full on into my broken where I know I will indeed break free.

Thanks for listening…

Bekah

Glorious impossible

As we navigate the confusing messiness of grief during the holiday season, I found myself looking back through my journal at this time last year… Christmas 2015. As we were gearing up for the Christmas season, I remember Danny and I saying to each other that we both felt it was going to be Titus’s last Christmas. Of course, I questioned my gut instinct and wondered if I was just being dramatic. After all, many kids with CLN2 live to 8, 9, even 12. Titus was only 5. That year I was so very aware and eager to make everything perfect. The complicated thing about holdays and family is that things rarely go “perfect”. But it became a Christmas to always remember. I want to take you back to December 24th and my journal entry that day. I was going to post it last year, but there are times I just freeze and cannot share my heart. But today, I can and will.

December 24, 2015 journal entry:

Each time Christmas comes around I hope I go through it slow enough to have what I call, Christmas moments. Some years I feel successful at this, other years I’m drowning in the schedule. This year has been crazy and I’m tempted to create these moments just so I don’t feel guilty about missing Christmas. However, one such moment snuck up on me last Sunday and it is not one I could’ve planned or scheduled. (And aren’t those the most real, anyway?) It was a moment I needed to allow into my heart to sink in and flood my soul. It caught me off guard. I was sitting in church and our worship leader begins playing a song I’d never heard before. The words told of the birth of Jesus. I let myself  seriously consider exactly how this all played out.

A virgin got pregnant and still remained a virgin. Wow!

Jesus, our Lord, came in such a humble and vulnerable state as a baby boy and his first bed was a manger. Wow!

Mary raised “God with us” and didn’t screw him up! Wow!

Jesus walked on water, healed incurable diseases, loved EVERYONE. Wow!

He took on the most brutal death, a very final deed to release the foothold evil had on this world to unleash even greater powers- Grace and hope and love! Wow! It’s all such a glorious impossible!

And as I listened to this song being played, tears flowed down over my cheeks. At first I was embarrassed. I cry way to easily at things sometimes. And then I felt Him nudge me. “Sit in this.” He echoed in my heart. “I am meeting you here. I am flooding your heart with enough… with glorious impossible.”

There is a lot of impossible going on in our lives right now. Simultaneously, there are a bunch of Christmas moments too. Many volunteered to make these moments happen this Christmas for our family in a BIG way. One church in Illinois purchased plane tickets for family members who couldn’t afford to get here so they could get here! Another generous donor from Illinois sent enough funds for us to make accomodations for our entire family! And a wonderful, new friend helped us land incredibly close accomodations to us (ya know, like 4 doors down). Our California church family stepped in the gap in a big way and provided food for all of us while everyone was here celebrating. A family whom I’d never met beforehand came by to love on our family through the gift of 2 Disneyland tickets. Just a few days later our church family surprised us, yet again, with annual passes to Disney, allowing us to use the 2 extra tickets to treat Gramma Cindy and Grandpa Eddie to an experience with the boys there. Our boys’ rehab team decided to put together a “southern california christmas” to remember and treated our whole family to a duffy boat tour of the harbor, all lit up beautifully, and with delicious food to boot.

The desire in my heart to have everyone here for Christmas had looked quite bleak and, well, impossible! Nothing is as life changing as what happened in Bethlehem all those thousands of years ago, but this year we truly have experienced the glorious impossible through the generosity and love of so many others!

But still the heaviest thing on my heart is the disease my boys fight against on a daily basis. The insane amount of pressure, guilt, and fear that can take over in a finger snap without warning… and I have to talk it back into its little corner. The timeline on a drug that looks to be truly helpful to our boys but is unavailable at this time as it begins the long journey through FDA approval. It’s an impossible situation. Desperately impossible. For me. And in that moment, sitting in that chair in the sanctuary on that gifted-to-me Sunday, I was reminded – No, not desperate impossible… Glorious impossible. 

-End journal entry

Here I am, again facing the holidays with a whole bunch of desperate impossible. At least, that’s what many would think, and often how I feel. The 17th of this month marked 3 months since the last time I held my oldest baby, my 6 year old. That miracle Christmas I journaled about really was his last Christmas. I consider it a gift that God gave us the hunch. And as I watched death swallow him up on this earth in one final breath the night of September 17th at 10:52 pm, I felt the glorious impossible that was the confident hope that our Lord already conquered death and Titus could now fully live the way He was always intended to.

We also find ourselves now 7 treatments in to that treatment I referred to in my journal entry last year. It is still moving through FDA approval, but Ely was graciously granted access to an early access program. The Ride for Ely campaign made it possible to accept the offer for his spot and not have the travel expenses swallow us whole. Glorious impossible.

Now we take on a new chapter. The one where we balance grief, pain, hope, reality… it’s not easy. We have seen first hand in our story and so many others that life doesn’t always end easy. We don’t always land on our feet, but rather curled up in a ball crying out, again, that we simply can’t do this. It’s all a desperate impossible.

And don’t we all have those? Those desperate impossibles? We are a broken people. But my prayer is that as you experience Christmas this year, it won’t be just about the tradition, the food, the family get togethers, the drama, but rather all about the hope and grace this glorious impossible has to offer you this Christmas.

See the Virgin is delivered
In a cold and crowded stall
Mirror of the Father’s glory
Lies beside her in the straw

He is Mercy’s incarnation
Marvel at this miracle!
For the Virgin gently holds
The Glorious Impossible

Love has come to walk on water
Turn the water into wine
Touch the leper, bless the children
Love both human and divine

Praise the wisdom of the Father
Who has spoken through His Son
Speaking still, He calls us to
The Glorious Impossible

Hallelujah
Hallelujah
Hallelujah
Glorious Impossible

He was bruised for our transgressions
And He bears eternal scars
He was raised for our salvation
And His righteousness is ours

Praise, oh praise Him, praise the glory
Of this lavish grace so full
Lift your souls now and receive the
Glorious Impossible!

-Glorious Impossible lyrics

 

Merry Christmas and thanks for listening…

Bekah

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