Why the why matters

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

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

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

This. Is. The. Why.

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

Everyone except one.

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

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

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

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

Just some of the blessings in the broken

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

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

Thanks for listening…

Bekah

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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

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