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

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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

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

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

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

A new set of eyes

It’s taken me a while to hunker down and write a new post. Life as we know it is changing, fast. Each time we adjust, change happens and we have to adjust again. We are living in a stark reality that there is a timeline on my son’s life… it isn’t assumed, it is a fact. And the fact is that it’s too short. Or at least that is how I’ve always thought, my brain never thinking there was another way to operate. We are supposed to live long, die old, getting to experience great things! Titus should be able play in his first soccer game, graduate, get married and be a dad! That is really living! Right?

This disease has stolen a lot from us in a short time. I find myself in tears over the “lasts” we’ve experienced that I didn’t even know were “lasts”. The last time I would hear my son proudly state that his name is “TITUS!”, the last time I would see him run to the park up ahead of me, the last time I would know for a fact that he saw me smile at him, the last time I would hear him say “love you”. As this change has happened, I’ve had to figure out how to relate to my son in a new way. His vision is almost gone. How do I help him still see? What does that even mean? He is going to go the rest of his days blind, so does that mean he has to miss out on the beauty this life offers?

And then I read this out of One Thousand Gifts, by Ann Voskamp. “The only place we need see before we die is this place of seeing God, here and now.”

My son doesn’t have to score a goal to fully live. He doesn’t have to live to be 92 with grandkids and great grandkids to fully live. My son doesn’t have to be able to see everything around him to fully live. My son is fully living here and now and I know this because I see his spirit. I see his joy. Joy does not have a physical prerequisite to be able to experience it. We do not have to physically see God to know he’s here and working… We see him through our spirit.

This aha moment had given me new eyes too. No longer do I walk blindly through the day doing my momma thing only to have my eyes opened by some majestic landscape or some huge miraculous happening. My eyes are always open. And so are Titus’s. We breathe in the daily beauty, the smiles, cuddles, hugs, encouraging words from others, the times we play fetch with Sunny, the times when we go outside on a walk, when we simply lay still, and through all of that and more, I find reasons to be thankful. And out of thankfulness for all God has done and continues to do, I find joy.

We aren’t operating in bucket list mode anymore. I don’t think to myself, “someday when we can do this again, we’ll really be living”. That is a dark path for me to walk right now. No, instead I choose to see life through the eyes of joy in the here and now. Through the eyes of thankfulness in the here and now. We don’t ever completely grasp what God has done and is doing until we learn how to live in this way. How to see through new eyes.

So today, I saw my son’s spirit as he pursed his lips and spit, egging me on to do a giant raspberry on his tummy. And I will see his spirit in the way he calms as I hold him. And in the way he pounds his arms up and down to feel his world and how he still laughs at his brother because he just knows what Ely is doing. And when my son can no longer show any of this through his physical body, I will still pick him up and dance with him, I will still sing to him, pray with him, hold him. I know that he will still see God even through the limitations set out for him. Today, I choose thankfulness and joy, here and now and for that I see through new eyes.

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Taken yesterday on his bike, love the glimpse through his eyes to his soul

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Thankful for this goofball, always giving us a reason to laugh

Thanks for listening…

Bekah