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