It was you

Two years ago… It was two years ago we got a second devastating diagnosis and were told Ely was also going to have to fight the same disease his brother was fighting. I had sunk into a puddle of all kinds of mess that day trying to absorb what that news really meant and how we were supposed to survive. I remember Danny and I calling all the family all over again, delivering the news all over again. Texting friends to say our greatest fear was real… that BOTH our boys were affected. And then Grandpa Eddie got home from work (we were in Idaho on vacation visiting when we got the call) and offered Starbucks Frappuccinos.

Yes, please.

And we took a brave step forward, fraps in hand. And I learned the gift of living in the moment; truly absorbing what God was doing in and around us right then and right there, a place I called “This Now” land.

I can’t believe we are a solid two+ years into this Batten journey. Many have described our family as brave, courageous, joyful, inspiring, warriors. I don’t write this list to toot our horns because even as I have journeyed this crazy way, I can’t muster up the energy to embrace those descriptors as something I have managed to accomplish. As I pondered on the last two years and how far we’ve come since Titus’s diagnosis (April 7, 2015) and Ely’s (June 25, 2015) I am in awe at how far we’ve been carried.

I can’t imagine a more complete and all encompassing community as the one we’ve experienced these last couple years.

It was you who created a service project centered around supporting our family and dropped off special gifts for the boys, gift cards, all kinds of yummies, and words of encouragement that helped us along for months and months on end.

It was you who chose to care for my boys, whether it was a couple hours or many many days, whether it was just that one time we really needed someone or a steady hand in our home.

It was you who prayed and prayed and prayed and prayed. And when there was nothing else you could do, you continued to pray.

It was you who uprooted your lives and moved here to be with us, to support us, to love us.

It was you who sent consistent messages of encouragement through facebook, texting, notes in the mail and phone calls.

It was you who made sure I got “mom time” through coffee dates, treating me to hair cuts and color, massages, facials, or allowing me quiet time to just go “be”.

It was you who helped Danny and  I continue to prioritize our marriage.

It was you who told me (not asked) that you were going to be paying for housekeeping so I didn’t have to think about how to find time and energy to deep clean my toilets.

It was you who went grocery shopping for our family and provided meal after meal after meal.

It was you who sent special deliveries, and dropped off flowers or sweet treats just to put a smile on our faces.

It was you who helped us celebrate our last Christmas with Titus really big, gave us Disneyland experiences as a family, gifted your time and talents to give us memories of our boys through photographs, blankets, and boat rides.

It was you who invited us over to just enjoy being together and allow us laughter and reprieve from the seriousness of our daily life; to gift us your friendship.

It was you who donated whether it was to help us purchase our van, make 13 round trip flights to Ohio, or manage the daily financial burden that a rare disease brings upon our family.

It was you who did lemonade stands, sold baked goods, held garage sales, auctions, played sports games dedicated to our boys, ran 5ks to support us, rode 1300 miles on your bike, hiked mountain peaks, all to join hands with us in this journey.

It was you who helped us through a refrigerator and washing machine crisis.

It was you who gave Titus and Ely gifts of laughter and joy as you engaged with them doing silly things like karate chops, raspberries, monkey noises, train whistles and dinosaur roars.

It was you who didn’t shy away from the pain of that last week with Titus, but poured into our home to say goodbye, to bring an entire “Titus parade” in yellow to our front door, to hold our son, to shed tears with us, to sing praises to our God with us that filled us with strength and hope, to pray around us, to remember with us.

It was hundreds of you who showed up to celebrate Titus in the most beautiful memorial service we could’ve hoped for. Jesus sure showed up there.

It was you who took us in as complete strangers to stay in your home every time we traveled to Ohio for treatment and let us use your vehicle. We didn’t stay strangers… no, now we are family.

It was you who didn’t have to befriend us, but each time we journeyed to Ohio we were greeted by your smiles, love and support in so many ways that filled us in a most exhausting time of our lives.

It was you who found yourself on this very same Batten journey and allowed us to feel our heartbreak together and find hope together.

It was you who created a safe place for us to be vulnerable, angry, joyful, inspired, confused, burdened.

It was you who advocated for us through the FDA approval process, who allowed Ely in to the trial, who fought long and hard to open a site locally.

It was you who care so wonderfully for my son at each infusion with a smile on your face and joy in your soul. You give hugs, a listening ear, and even soy lattes.

It was you who taught my boys in your classrooms, but you did more than teach. You loved and loved big. They felt that love and so did we. Always.

It was you.

I only stop here because I know this post is getting quite long. I think I made my point. You may wonder how joy keeps bubbling to the top, even as tears of pain spill over my eyes… Jesus has given us the most incredible gift in all of you.

Generosity at this level can feel heavy. But through this journey, we have changed. We’ve learned to say “yes, please” and “we need you”. As a result, our hearts have burst open to be filled with enough. Enough to do this journey courageously. My prayer is that it’s enough to spill out onto others who need the same thing we needed and continue to need; love, support, prayer, and hands locking hands saying “you are not alone”. Oh how I no longer live to check off a bucket list, but rather to pour my bucket out even as God is filling it so others experience the goodness of God and his love for each and every one of us.

To you, thank you. I’m forever grateful to journey this with you as I share the words on my heart through this blog. Our journey is no where near over and I continue to dream of what God will keep doing to redeem the pain and heartache of this life. I’m excited for what is to come even as we live in great uncertainty with Ely and the grief of saying good bye for now to Titus. Uncertainty and grief do not equal hopelessness, but rather I have hope and great anticipation for what is to come. Thanks for journeying with us.

Thanks for listening,

Bekah

 

Advertisements

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

choc
Passing on joy to other kids at our children’s hospital
christmas-thankyou
Our family has been so blessed!
dlandt4t
Family trip to Disneyland… choosing joy after a devastating diagnosis
onut4t
ONU Volleyball supporting us!
t4t
CUI basketball T4T&E game
t4t2
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

Ride for Ely

Thank you, everyone, for an overwhelming response of love and support for our family. We were blown away by so many aspects of the Ride for Ely journey.

First, Rockey deciding to bike over 1,000 miles just to support Ely… wow. (And then he ACTUALLY DID IT!)

Second, the amount of money raised from people we know, people we have some loose connections to through mutual friends and then from complete strangers. God showed up in His compassionate, loving way through all of you. He confirmed through your actions that He truly means it when He says He will not leave us alone on this journey.

Third, we loved seeing the pictures, videos, and warm welcomes throughout Rockey’s journey.

Finally, the timing of it all is just jaw-dropping. We knew we had a big shot at getting Ely an experimental treatment that could possibly save his life. But the obstacles in the way were going to take us down fast. Just the amount of flying alone was going to rack up the $$ signs. And emotionally, to lose Titus in the midst of all this while being handed hope for Ely… it all seemed just too much to bare. But we watched God work through all of you as each obstacle was taken out. Flights? No problem. A place to stay in Ohio? No problem. Warm hugs when the pain gets too hard or the love is bubbling out? No problem. Prayer partners along the journey? No problem! And as Rockey biked into Darby, MT finishing the Ride For Ely, we were in Columbus, OH where Ely was just coming out of recovery from the surgery he needed to start the treatment. What a God-thing all of this and all of you are to us.

We feel the weight of the generosity… its heavy. We do not take lightly what has been done for our family. Time and time again throughout this Batten journey, you all confirmed with us that you were indeed still there even if life got foggy and we couldn’t even see our hands in front of our faces. You all have been exactly the kind of community Jesus always intended for us all to be. And to be the recipients of such love, such generosity… it is a heavy, heavy blessing. To receive and not be able give back equal value (in man’s eyes), we’ve had to learn the lesson of accepting those gifts even when we did nothing to earn them. And what comes along with that is a deep gratitude, thankfulness. And a very hands on lesson about what Jesus has done for all of us. He gave everything, right down to giving up his life for us even though we did nothing to earn that kind of love, advocacy, and deep relationship with him.

received_10157494576415641

And so, we find ourselves in a place where our hands are open and ready to receive, ready to give. We have been forever changed. We will whisper this truth and love in dark places and will shout it from rooftops. We take a step forward into this new chapter, our hearts broken and shattered but love shining through the destruction and mutilation, creating beauty and strength among the broken. We look to each side and see all of you, also fellow comrades of broken hearts. We all grasp hands because this becomes strength and we take that step together. This strength and love is tangible, palpable. The Holy Spirit is among, and in and intertwined throughout us. The power to transform and change is ours through the Holy Spirit. This is the journey we are on. This is what the Ride for Ely was all about. Thank you. Just… thank you.

To continue to follow our story (and we’d be honored and humbled if you did) find us on facebook @team4titusandely.

We also invite anyone who’d like to attend to join us for Titus’s life celebration on October 28th @ 7 pm at Mariners church MV in Mission Viejo, CA.
With all our love and gratitude,
Danny, Bekah, Titus and Ely

Community or bust

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

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

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

But…

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

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

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

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

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

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

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

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

20150419_103541
On the train at Disneyland! Yellow for Titus! He had a great time!
20150419_101853
Murphy side of the family!
20150425_080930
My boys… I have no words, just love!
Titus in his new stroller that was given to us by a generous family who also gets the daily grind of this life.
Titus in his new stroller that was given to us by a generous family who also gets the daily grind of this life.

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

Thanks for listening…

Bekah