Chasing Thankfulness

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

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

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

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

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

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

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

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

Thank you for sweet fruit from our tangerine tree.

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

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

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

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

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

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

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

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

Thank you for redemption.

Thank you for love, compassion, grace.

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

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

Thank you for holding my son.

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

And you are enough. 

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

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

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

Thanks for listening,

Bekah

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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

Truth.

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

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

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

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

Always,

Always,

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

And his response to me?

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

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

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

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

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

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My little bundle of joy in the face of many hardships

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

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

Thanks for listening…

Bekah

Fear Overwhelming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-Lauren Daigle

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

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

Thanks for listening…

Bekah

My desperate prayer

Many reach out to me with encouragement, affirmations. They mean a lot, but perhaps they mean too much to me. It’s easy to start thinking I’m responsible for the good happening around me. And that’s dangerous. People who need to be seen become invisible by my elevated shadow. I start making decisions out of my own knowledge and forget to seek God’s wisdom. The truth is, God is in all of this. He is working. And often, I get in the way.

True vulnerability here… I’m quick to grow annoyed by those closest to me, I have a biting sarcasm, I can do a good door slam, and demonstrate a lot more grace to those I don’t know than those who closely surround me on a daily basis. Yes, I am a thick headed knuckle brain. We’ve all heard that stat about 50% of marriages ending in divorce. Well that percentage jumps up to between 80-90% for families with kids with special needs. I would do you all a disservice if I write in vulnerable truth and honesty on this blog but refuse to address how this effects my marriage. This morning I sit with my Lord after multiple nights of little to no sleep (although last night was a good one! ), one too many arguments with my husband, and weariness on my soul that is caked on like a bitter, thick oil. No matter how hard I scrape away at it, there is still a film left that I can’t get rid of on my own. My heart cries out to my daddy, my Abba, my Lord:

Protect me! Protect me from my pride, ignorance, my fear. I want to be filled with You – so much that we are one in soul. When You stir, I feel You. When You say move, I do so with abandon of any reserve I may have. Speak through me, but don’t let my fleshy self-centeredness get in the way, thinking I’m “all that”. I need You – to my core. We all do! I cannot survive without You! Protect my husband and I’s hearts from anger, anxiety and fear. Take away rage and sarcasm. Give us strength we need each day to deal with the stresses of life – these stresses that are way too much for us to handle on our own. Give us wise council. Give us love. Cut through the hard and angry. Please, Lord, change us! You are powerful in this story –  don’t let us defile it by uncontrollable anger and falling into deep brokeness being swallowed up and blinded by it, saying hurtful things, but rather in our brokeness, bring victory! Bring love! Bring goodness! Undeniable, heart jolting, can’t-help-but-feel-it-and-smile kind of goodness! Give us fresh breath even in a stale room. Help us filter through pain and confusion and see Your glory and goodness. Allow us to undeniably feel what it means to be full of Your Spirit. Unstoppable momentum! Thank you for Your patience. We are not quick studies, we humans. We are stubborn, lazy, complacent. Rise up in Danny and I. Don’t leave us here. Take us to new heights of love and loyalty. Change our hearts. We are broken before you, working hard to make all look ok. We are not ok. We are not grace-filled. We are not first responders of love. Lord, I ache in repentance. Know my heart. Know my limits. And take me beyond those limits making it clear there is no other way to get there except through You, and knowing You are available to ALL!  Today, when Satan pounds hard on our hearts and brings weariness that wants to unleash into anger and bitterness, break out Spirit of God! Be so strong that anger fizzles out. That sarcasm can’t make it past my tongue. That love gets to win today. Tear down these walls.  After all, we know You make beautiful things out of us!”

And to my husband, as we just passed 10 years of marriage together, I love you. We are a team, journeying through what was truly the unimaginable to us just a few short months ago. I know you feel the heavy weight of the burden your family has to carry. And you feel the responsibility to stay strong, keep it together. This year, I pray for God to give you a safe place to fall apart and be built back up in love. For your strength to be sourced from a never ending source of hope and thankfulness. That you will see your value in this story, the need we have for you, my husband, and daddy to our boys. I pray you will be “seen” by me and others, but most importantly, seen by our Creator. I pray you will feel His unconditional love and that it would be enough. Hun, I pray for true, undeniable, bubbling over the top joy for you.

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My amazing Hubby taking on one of his greatest fears to gift me a day of adventure for our 10 year anniversary!
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Absolutely enjoying my time flying free through the air!
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The first time we’ve gotten away together for an extended amount of time. We had so much fun!
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And this is why we must take care of each other in love and grace… because of these two precious boys!

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

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