Oh the anticipation…

I’m sitting here wide awake at 2:30 am. Frustrating… because sleep has been evading my son for a while now and just when he finds it, I lose it. I’ve been on the verge of panic mode, that’s why I can’t sleep in these wee hours of the morning. Usually I can shove the fears out of my mind and replace them with truths, but right now they haunt me. And I realize I need to take them on. To allow each one a platform so I might be able to deal with them individually, to deliver a sentence that lasts instead of turning around finding one or more of them have retrieved a ‘get out of jail’ card and are wreaking havoc on my life.

The truth is, I’m afraid.

I’m afraid I don’t have what it takes to do this. What happens if this is true? If I most certainly crumble and there is nothing left of me but an empty shell? What if, despite all my efforts to evade depression and grief, sorrow and heartache take over and they are all I’ll ever feel again?

What if… What if the only thing I will have left is you, God? All else is gone. My whole identity of who I am in this life, my dreams, my everythings.

What if? Because there are days it feels entirely possible.

I keep mulling that around in my mind. I’m terrified by it, to be honest. That road feels too painful. I cry… that classic ugly cry. I beg for Him to change things. I can’t do this… I can’t give Him everything and allow Him to take away if that’s what He chooses. I can’t. How would I live in such an empty shell of life? No breath, no sustenance, no control.

But wait…
There is still YOU, God.

And in that moment, all I will be able to see is You. Nothing else to filter you through, nothing to hold as leverage, nothing to put blame on or put my faith in. It is only you.

And because I believe You love me and have great plans for this pain my family endures, I know in my heart I wouldn’t just be surviving. I’d be thriving. A flood lamp beaming deep into my soul, through every part of me, only You. Your goodness, your love, your peace, your “fully enough”.

I find myself reminded once again how small I am. When I start to grasp this concept, I start to live and breathe in the very fullness of Him. If I try to live in the means of my physical body, my control, I will surely suffocate and succumb to despair, depression. But if I can live within the means of His Spirit, working in mine, my very lungs expand when all around me says they should be constricting. I’m pulling new breath in places I shouldn’t be breathing at all.

It occurs to me that this might sound heartless. How can I so easily write off all that fills my life now and accept that even if all is taken, I could still be full?

It’s not an easy write off at all. My heart has been filled with so much love – because of my boys, my husband, my family and friends. And that love source comes from God. He is love. He doesn’t just have love… He IS love!

I have two choices, the way I see it. First choice, I could choose to grasp tightly to my worries, my fear and need for control, which in turn is really putting two hands around my throat and squeezing tight…

Or…

I can accept this incredible gift of love God has poured on me. And when the day comes in my life when all that’s left is Him, I still have love. I have not lost. And I know the same promise of love is extended to my sweet boys, my husband. I could never provide that kind of everlasting, thirst quenching, joyful kind of love to them out of my own means. It is of Him. And so I find myself waiting in anticipation

Anticipation is a funny thing. It can be exciting or it can be anxiety kingdom! We just recently planned a trip to go see some dear friends. Originally I was going to make it a surprise, but my anticipation of the trip was so big, I couldn’t hold it in. I had to share. In turn, I gave them the gift of anticipation. We anticipate things all the time! I just learned about a term called anticipatory grief. It’s a term attempting to define a complicated combination of emotions. For those of us caring for terminally ill loved ones, we grieve daily at what has been lost while simultaneously trying to leave room for living in the moment, enjoying the now, taking in whatever we can before all is gone. And we do that all while we wait for the end to come. It can become quite the merry go round. I need something, someone rooting me… A firm foundation in the midst of the crazy cycle. I need anticipation of what God will do.

He doesn’t expect us to live these lives, full of hard, with no promise of redemption. No! Rather, he uses all things for good, redeems it all! What anticipation I have of what God is going to do through our story, through our sufferings.

So I come back round to my fear – the one of losing all. And I’m reminded that we won’t lose at all… In fact, we will gain! The day Titus leaves this physical world, he will be in the arms of Jesus! I imagine Jesus meeting him with a big, black, shiny train engine and letting him drive it and pull the horn. I can see my son, able to run, dance, talk, shout with joy! I love to imagine my Gramps and my sweet Grandma Naomi there to greet him, perhaps getting in on the train ride themselves. What anticipation I have for what God will do.

I imagine embarking on a journey to fight Batten disease and, along with many other amazing families, joining the fight to find a treatment or cure. Could God use us in this way? Oh the anticipation I have for what God will do.

I imagine lives who feel dark and lost stumbling upon our story and seeing truth shine through and love broken free. Perhaps they would see just how loved and treasured they too are by our God. Oh the anticipation of what God will do.

Let me tell you, I wouldn’t have written our story this way. But I’m here to say again, “Yes, Lord. I will go…” Wherever there is. Thank you for this gift of being Titus and Ely’s mommy. As fear rises and my perceived control slips away, my throat constricts and tears run hot, may I be reminded that I will always have You and I can wait in great anticipation for the wonderful, good things you will do.

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Thanks for listening…
Bekah

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How dare I “joy”

These days have been hard. They stretch me to new limits, expanding my soul and eyes to new things- mostly painful things. Its always weird for me to answer the question, “how is Titus is doing?” Or when I need to make a “well check” visit for him. You know, “Um… well, he’s good?? I guess (awkward silence).” I mean, really, what do you say to that? “Well, he’s dying, but you know… We’re good!”

Last night, I dazed off until my husband interrupted and asked what I was thinking. I told him he didn’t want to know… it wasn’t very uplifting. When he pushed for the answer, I declared I wanted our normal life back, the one where two rambunctious boys drove me absolutely crazy, ran me ragged from sun up to sun down. But it’s gone… I can’t get back there.

I live in two worlds right now. The one where I’m grasping for any thread of control over this situation- just one ounce of human promise that I can step in and save my sons from this monstrous beast that is Batten Disease. This world where control is necessary for survival is easily understood by me and by others around me. Of course I feel this way!

But the second world I live in is this obscure world of joy. Joy… it’s a word Satan is trying to convince me to believe means giving up the fight or to define an apparent front I’m putting on to make people think I’m ok. I don’t use this word lightly. What does this even mean to have joy in the midst of this heartbreaking place, where we’ve been cheated of all we thought we should experience, receive?

My husband actually said these words to me the other day… “You seem happy. I like that.” My heart swelled and my mind reeled all at once! How dare I be happy! How dare I “joy”! I should be consumed with anger, sorrow, fear… surely those emotions will get us somewhere. I mean, doesn’t anger become a call to action? But here’s the thing. Happy is only a part of joy. I’ve found that Joy is being fully present in a moment, fully feeling the pain we are in and still finding the courage to claim thankfulness. Finding the ugly-beautiful. Fully feeling pain lends itself to fully feeling joy. I do feel anger, sadness, fear, but I also feel joy!

What God has given me rises above circumstances. My joy is purely based on the beauty of who God is, not the ugliness that has come upon our family. My joy is based on a God who is GOOD, LOVING. Who feels this pain with me. Who is in control with our best interests in his heart. This doesn’t change. It won’t change if a cure is found to save our boys. It won’t change if this disease takes them away from us.

So now I know, I can have joy even in this. And when I see lives changed, of people learning of deep, secure, safe love in Christ because of our story, I have joy. It’s a major perspective shift and… how dare I say what I’m about to say… Should I? Okay, well here it goes…

What if, just what if, this disease that we see as ugly through our wordly eyes would take on another look if we put on our Jesus eyes? Think about it. We see the path Jesus took to the cross, being crucified- an intense, horrific, painful death- we call that path good! GOOD! Really?? How could we ever call that good? Because we know the end of the story. We know that it had to happen that way for sin and death to be conquered. To loosen the grip of death it had around us and when Jesus came back from the dead, proving he could overcome all, yes, even death, and make all things good, yes, even crucifixion, then why can’t our situation be seen as good?

Because I know the end of the story here too. I don’t know exactly how it will play out, but I know Titus and Ely’s story will reach people who would otherwise not hear about God’s deep, intense love for them. I know Titus is being loved even now in ways I can’t imagine as his spirit remains, but his body fades. God is with him. I know that someday, Titus and Ely will be wrapped in the arms of the one who loves them most… Jesus… in heaven. They will no longer be bound to this world in horrible ways, but will be free! And, can I ask one more question? Could we ever grasp this understanding of His depth of love and goodness if our days were always sunshine and smiles?

So… yes, how dare I “joy”. How dare I find new breath in this situation.

“Awakening to joy awakens to pain…” Ann Voskamp
Having joy in this life does not numb me to the pain of it. I can’t tell you how many times I’ve cried… like hard ugly cries. How many times I’ve pleaded with God to change the storyline… Still do. How many times I’ve felt such deep pain when a timehop picture (curse that app!) pops up or a video is watched and I see the Titus I know is still inside. I believe Jesus felt every ounce of pain on that cross, as much as anyone else who was ever put to death in that dreadful way. And pain, yes, I feel it. To the core. And almost more so because I’ve opened myself up to fully feel – to seek the joy – the God moments and good in our situation. This keeps me going. It keeps me from numbing over, from checking out to protect my heart. Because I seek to feel joy wholeheartedly, it means I also feel pain wholeheartedly. I feel helplessness, lack of control, emptiness… And that’s ok.

I leave you with one more quote from a book I’ve been journeying through by Ann Voskamp. This is in reference as to whether our dark pain could actually be the genesis of new life… “Yes. And emptiness itself can birth the fullness of grace because in the emptiness we have the opportunity to turn to God, the only begetter of grace, and find all the fullness of joy.”

Here’s to new, full, joyful life…

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Thanks for listening…

Bekah

Dear Bekah

You are going to hear that your child has an awful disease. I want you to know something…

Your world, as you know it, will come crashing down around you. It will shatter and you will be left broken in pieces. You’ll look around you at the mess and wonder at the puny strength this supposedly strong woman of God has. Everything you once dreamed of will be gone, everything you worried about in raising your child, no longer relevant or concerning.

You will begin a new kind of life, one in which you are living out every parent’s worst nightmare. As people hear your story, especially other parents, they will cry… A lot. They will break for you. They can’t imagine receiving the kind of news you’ve received.

And neither would you… Until you did.

Every moment will be painful. You’ll feel those hot tears blazing down on you in every circumstance. You’ll cry when your child laughs, when he cries, when he sleeps.

And it will feel like you’ll never feel another kind of emotion again… Pain, only pain, forever.

And then something happens.

Ever so subtly and slowly, your world begins to rebuild. Your life as a Jesus follower no longer looks pristine and perfect. As it is rebuilt, it is built with shattered glass, divots, cuts in all angles. It’s as if you are a great cathedral being rebuilt using colors of all kinds. Dark, light, bright, muted. This cathedral is crooked, jagged, all with the most ugly beautiful you’ve ever seen. The dimensions are dynamic and breathtaking as light rips through the shattered glass leaving an unworldly beauty that only ONE can give.

It is so subtle, it might be a few days before you notice it, but the heaviness in your heart, the hot tears in your eyes, they aren’t holding you hostage like they did before. You take a step forward in acceptance, albeit a bitter and sorrowful one, and you find yourself stepping into a moment… Whatever moment you are in right then.

You notice things you’ve never noticed before and you start to feel something… Joy.

At first, you’re relieved! You thought that would never come back. But then you feel guilt. How can I feel joy right now? How can I accept this? How can I ever be happy again with a loss so great?

I don’t know… You just feel it.

God rebuilds you into a beautiful, deep, courageous, joyful, fully surrendered person. One who lives more authentically, more vulnerably, more present, more fully, more openly, more loving, more thankful, more joyful.

Dear Bekah… When your world comes crashing down there is ONE there to rebuild it. And you will be able to show others that Jesus can do that for them in the midst of their brokenness too.

You have become a shattered beauty.

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Thanks for listening,

Bekah

This… this, now

I can see it all… the way his eyes light up all blue and the widows peak defines his face so distinctly. How he stands fearlessly in the water, splashing, jutting his bottom jaw out just slightly. Throwing water over him in a shimmery, watery arc, glistening in the sun. The way he accidentally splashes water right into his face, tries his best to wipe it off and then goes back for more. Thats my Ely! Adventurous, fearless, mischevious, curious, joyful.

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I watched his grandma, grandpa, aunt, and daddy look on with love, being sure to cheer for him on command, and Ely will command! They took pictures, video, anything to capture the moment… to make sure we didn’t miss it, wouldn’t forget it.

Nothing spirals you into living in the moment quite like the type of news our family has had to hear. And today we had to hear it again. Our baby, our Ely, is also affected by this monster we call Batten disease. He will follow in the same path as his brother. As I spoke to our genetic counselor today in our 2 minute phone call, my first word was a devastated, “no…”, and next, “what now?”

Both of them, Lord? BOTH OF THEM, LORD?

I’m thrown into a spiral of deep sorrow, collapsing on the sidewalk in front of my inlaws house, sobbing. My sister in law was immediately by my side, only down to visit us for one full day… this just happened to be the day. I called my husband to break the news. He rushed back to the house and we began to relive what we just did 2 and 1/2 short months ago with our oldest. Our worst nightmare. And I still have that question. What now?

What now?

Oh the amount of loss we are experiencing in a single moment is too much, crippling in the cruelest ways, tearing all control from our fingertips.

What now?

The tears don’t stop… happy moments, sad moments, they all tweak at the heart the same now.

What now?

The lies running through my mind telling me I must not have what it takes to parent a teenage boy. The pain I feel when I see other children achieve what my children never will.

What now?

The only answer resounding in my heart is this moment now. Right now. This… this now.

This… where my son grabs his bottle and curls up next to me.

This… where he demonstrates his hard headedness and throws a fit complete with hitting, screaming and throwing himself to the ground, and usually engaging in this behavior in a moment that ensures a larger audience than just my eyes.

This… where he growls “daaadddaaa” every time daddy comes home from work.

This… when he snuggles his head into my neck as we dance around the room singing our bedtime song.

This… when he grabs his shoes off the rack, showing us he’s ready for an adventure, any adventure.

This… his love for people and the way he can engage with each individual with a twinkle in his eye.

This is where I live. I’ve been living in “this-land” for a while now. And what is being defined in a clearer way all the time as I occupy this state of mind is thankfulness. Not the polite, “thank you so much” kind of thankfulness, but an unfiltered, emotional sort of thankfulness that is full of pain and full of joy. And yes, those two things can happen in one’s heart simultaneously. I feel this thankfulness to my core. Each moment I am in, I get to keep. I’m not so sure about the next one. So, here now, for this now, thank you Lord.

Getting my kisses!
Getting my kisses!
Playing hard... he knows no other way
Playing hard… he knows no other way
One of my favorite moments of my boys laughing together
One of my favorite moments of my boys laughing together

These moments are precious, friends. The small moments… they are the ones that become really big moments. Don’t miss them. Don’t let them slip by.

Thanks for listening…

Bekah

Community or bust

It’s quiet in my house. As always, my thoughts are running a million miles a minute. I’m thinking about Titus, always Titus, and the rest of my family. About the hope I dare to have for a future for Ely while in my mind I’m terrified of the results we could find once he is tested. I’m thinking about the thousands who are supporting us. I’m thinking about the things I am learning about God that are just at the tip of my reach, like I know what it is I’m learning, yet it is still so profound and mysterious. And then my mind begins to shape this conversation… with Satan. It goes something like this:

ME: “You think you’ve got this don’t you. You think you’ve got me down. I’ll tell you what… it’s been a valiant effort. And I’m broken, that’s for sure. I’m scared. I’m angry. But that doesn’t equal out to being yours. Because I’ll tell you what, Satan… you have to understand. I’m just the front lines in this story with a HUGE army behind me. When I go down, I will be pulled from that carnage and I will be carried away from it. I will be cared for. I will be loved on. You have to take down my neighbor who stands by us and supports us in the daily grind. You have to take down the friends who have felt loss and difficult parenting themselves and have chosen to support us and each other. You have to take down the thousands who are praying for strength and peace and joy and healing. You have to take down those who have chosen to support us through cards, money and hugs. You have to take down the first grade class who made cards to encourage our son. You have to take down a family who loves each other and stands by each other through the thick and the thin. You have to take down moms (yeah, those are the worst ones) who intercede on our behalf with a heart full of mommy love. And you wonder why I’m so strong… why I don’t just fall. Because God has used my community to reinforce what I already know; that He loves us and we are not alone. And I will do the very same for anyone else who finds themselves battling on the frontlines in their story. Satan, you need to know… you can’t steal my joy.”

God has made something abundantly clear to me. We aren’t doing this alone. I would fully understand if someone heard my story and excused themselves to exit our lives. It’s difficult. It’s sad. It doesn’t have a happy earthly ending. But people aren’t doing that. They are joining us. We are getting cards daily reminding us that there are others praying for us, hurting with us, encouraging us. Life has been overwhelming, but as people have offered to go grocery shopping, make us meals, watch the boys, and just sit and listen when I need to cry or talk through things, it all has felt impossibly manageable. It’s so weird… I have this unexplained joy in our daily moments. I mean, really, what business do I have being joyful?

But…

If you could’ve opened a window up into my world this past week, you would’ve found myself and the boys driving home from a VBS meeting singing, “I love balloons, I love, I love balloons…” (If you know the tune to that song, I’m sorry… it is now stuck in your head.) My boys were laughing and giggling and I was acting like a crazy mom and it was joyful. 

You would’ve seen our boys give each other the best (and apparently the funniest, by the way they were laughing) hugs and kisses at bedtime.

You would’ve found a boy excited to go to school and teachers who hugged him and welcomed him back and told me his smile and laugh brightens their day.

You would’ve seen us walking Titus’s dog, Sunny, and breathing in the fresh air while helping Titus keep his strength and letting Ely run his energy out.

These are the moments I cling to. Because we have other moments. Moments of panic when Titus starts seizing. Moments of fits because he can’t communicate like he used to and no one understands. Moments of tube cleanings and diaper changes on both my boys. Moments of no sleep at night and pain that I can’t ease. Moments of guilt as I try to continue to parent both my children while one requires the majority of my time. Moments of failure as I give up things I never thought God would ask me to give up because I simply can’t do it all.

Let me be abundantly clear. I couldn’t see above the muck we are in if it weren’t for you. Yes, you. You all are my community. Every card, every hug, every financial gift, material gift, every gift of time, every cup of coffee, every listening ear, every text and phone call, every facebook “like” and comment, and every single prayer is carrying us through.

I’ve gotta say this, being so buried under the ugly imperfections this world dishes out to us has in turn, made even more clear the beauty of God. The contrast is starkly drastic. I didn’t notice it before like I do now. When I’m comfortable, I’m not looking for it. But now I LIVE for it. I NEED it. I need his goodness, his beauty in the ugly when there is no other way to survive.

His beauty is seen in all of you as God weaves our stories together and uses us to build each other up. God has wired us to need each other and to support each other. I have not once felt alone in this journey. I have not once felt abandoned.

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On the train at Disneyland! Yellow for Titus! He had a great time!
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Murphy side of the family!
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My boys… I have no words, just love!
Titus in his new stroller that was given to us by a generous family who also gets the daily grind of this life.
Titus in his new stroller that was given to us by a generous family who also gets the daily grind of this life.

Don’t miss out on the incredible community God desires for you. We all need it.

Thanks for listening…

Bekah

From the broken

As I read a bedtime story to my son tonight, I couldn’t keep back the tears. “Mama, what if I a were a slimy smelly sea creature with seaweed hanging from my body?” asks the boy in the book. And his mama assures him she would love him for exactly who he was, slimy, smelly seaweed and all. “I love you, my wonderful child,” she says.

A couple months ago I was thinking about love. How do we use love to help those around us truly fly, to be a part of God’s story the way He intends? As I was spending time just listening, God spoke this into my heart. “Love is… NOT holding someone to the impossible (and quite fake) standard of perfection that the world holds them to, while simultaneously championing them to be the very best version of themselves. In this you give that individual a chance to live authentically in who I (God) have created them to be.” I’ll be honest, at first I thought he was directing this to my heart because of how I needed to respond differently to my husband. And truthfully, I did need to hear it for that purpose but over the last few weeks and frankly, the last few days, this has taken on a whole new meaning for me and I believe God gave this to me so I could hold on to it now when I’ve felt the most broken than I’ve ever felt before.

A year ago I remember thinking I would surely break… snap at any moment. Danny and I were living in high alert mode as our son Titus had begun having seizures and wasn’t responding well to medication. Our youngest, Ely began having what the medical world called “ALTE’s”, apparent life threatening episodes. Ely would have such a forceful spit up that it would clog his nose and throat leaving him unable to breath or clear out on his own. Danny and I, countless times, suctioned him out, adrenaline pumping, working as fast as we could to save him from aspiration and ultimately, our worst fear… him dying.

Leading up to this most recent week, as we’ve faced health challenge after heath challenge, there was always something we could do to help our children. Ely had a 2 and 1/2 hour stomach surgery and has not had another dangerous episode again since. He was failure to thrive and had a feeding tube put in. He’s now gaining and actually finding himself the on the growth chart. We’ve faithfully given Titus every medication the drs prescribed to successfully control his asthma and allergies and have diligently searched for answers to his seizures and what we could do, radical or traditional, to help him. We sought out every therapy and assessment we were told or felt he needed and diligently got him on an IEP, all with promises that this was just a difficult season and we would see improvement with time.

Our search for answers ended this week, Tuesday at 11:45 am to be exact. And we are left with the ability to do only one thing… Love. Titus was diagnosed with a rare genetic disease called late infantile NCL. It is progressive and fatal with no cure. This disease will take our sweet boy away before he can experience being a teenager.
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There isn’t anything we can do to reverse the bad genes, to heal him. Appointment after appointment this week confirmed the diagnosis. And I’m left feeling desperate, helpless, sad… so so sad. And I find myself saying to Titus over and over again, “I love you.”

And God has been speaking to me in my deep brokenness of an even deeper love. A love that enables Titus to be all that he was meant to be despite the obvious imperfections we see in this world. And I want to champion that. I want to love my son like that.

This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it.

But… out of the broken comes love. An authentic, new eye-opening kind of love.

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His big smile lights up a room…

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The three most precious gifts God has given me…

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Our silly clown who adores his big brother…

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Gramma loving on these two…

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Making silly faces at each other and sharing laughter that comes from deep within…

Oh how I love and am loved.

Thanks for listening… And keep praying.

Bekah