Unlocking my heart

Featured by youcantstealmyjoy

I bent down to put the tracks away and melted into a puddle right then and there. I’d put these tracks away many a night but they were only ever out as a result of a meltdown or a half-hazard dump as Ely made his way through the toy bins and boxes, not slowing down to actually play with anything, his only goal to seemingly make a big giant mess.

But tonight was different.

I wasn’t putting away tracks that were sprawled all over my living room, thrown in anger or carelessness. They were pieced together in a uniform track with bridges on either side, an engine and two cars connected and resting at the bottom of one of the bridges. It was as if I had jumped back about 3 and ½ years in time and Titus had just laid there playing with them for 45 minutes, insisting I sit across from him and take my turn on half of the tracks each time the train came around to greet me, always with his “choo choo” as he passed it off.

I put each track away exactly as I have for years, still held in the same worn-down cardboard box they came in from Ikea and I feel a Holy Moment approach. I can’t quite define what it is, but somewhere deep within, my Abba Father is unlocking a piece of my mama heart. I can’t hold any of it in so tears flow, but not just because of my deep missing, but for the deep rejoicing too.

You see, tonight, Ely was the one who had insisted the train tracks get set up. And that I sit across from him and take my turn each time he rolled the train down the bridge and around to me. He passed them off to me each time with a soft “choo choo”. I’d kept these tracks out in the living room long after no one was interested in playing with them because they held such a sweet and tender memory of time spent with Titus. They have always frustrated the heck out of Ely so I stopped trying to put them together and drawing him in to play with them; as much for me as him because I got tired of dodging flying wooden tracks when he would scream and throw them. (It does not feel good getting pelted by wooden Ikea train tracks… just saying.)

And then suddenly he wanted to play. And play. And play. I was on guard because…. well, flying tracks! But none came hurling toward my head. The train would get derailed and I hurried to help him to avoid any eruption, but none came as he calmly tried his best to place them back on the track. We played, with soft “choo choos”, taking turns, saying “wheeee!” down each of the bridges and giggled when the trains derailed. Bed time came and I reluctantly paused to move on for the night.

As I cleaned up around the house and found myself on that floor in the midst of that Holy Moment I acknowledge the past several months have sent my heart into lock down. I know this already so it’s not a new revelation to me, but I didn’t anticipate a set of train tracks to be the tool to begin unlocking it again.

I don’t have to always stand waiting for the ball to drop, for the next emergency to happen, to record and observe all that is going wrong so I’m not caught off guard.

I can softly choo choo and giggle when things get derailed. I can breathe in those moments and allow my heart to feel them. He reminded me that right here is beauty. Right here He- my friend and companion- my God is here. And He just gifted me. I’ll take that kind of Mother’s Day gift any day and am so thankful I didn’t miss it this time.

Thanks for listening,

Bekah

Advertisements

Just breathe

Featured by youcantstealmyjoy

Ely was down for his nap. Successfully. That’s an important detail. I paced the parameter of the house. Lap completed, I began again. It was aimless. I was looking for my friends, Motivation and Inspiration. Two rounds through the house convinced me they were out and about and I would not find them here. I tried my hand at a fiction read. I made it through three short chapters before I realized there was nothing in me to even give this.

My mind jumped to my options. TV, Facebook, Instagram… Hmm…. Nope.

The house was quiet. Without even thinking about it, I found myself moving to the couch and curling up with Titus and Ely’s favorite Boise State Snuggy. I wasn’t tired, but then again, what would I call it? I had no energy to do anything. The desire and zest for any kind of project was depleted out of me.

It’s been an emotional few weeks for me. I’m not sure the trigger exactly. We have passed Titus’s one-year mark of going to be with Jesus. Around this time last year we were navigating Columbus travels and the clinical trial world with Ely. I know I have lots of reasons to feel deep emotions, but I truly can’t put my finger on what is happening in my heart and soul right in this moment. I laid down, closed my eyes. I lay still. Completely still. Which is impressive for me (ask my husband whom I drive crazy with my constant fidgeting). My eyes opened and fell on the canvas Danny had made for me for my birthday. An incredible gift; a beautiful family picture of Danny, Ely and I after Titus passed away, and photo-shopped in was one of my favorite pictures of Titus just before he had turned 4 years old. He fit perfectly between Danny’s arms and was slightly faded out, showing how close, yet how far he is now.

family photo 2017

How this has become my life, I’m not really sure. It just happened. I wonder at my evolving as a mom. And I feel a bit of a failure right now, if I’m speaking truthfully.

Ely’s bedroom door creaked open at that moment and I hear a sweet “Hi” float down the hallway. I returned a sweet hello back, beckoning my son to come out to the living room. His feet pitter-patted down the tile floor and he slid between the couch and recliner to get to where I was still laying snuggled under the blanket. My little one, he understands the need for a good cuddle. Without hesitation, he spotted his place next to me and burrowed in. I brushed my fingers through his hair as we both quietly laid there just being, him in his world, me in mine.

I thought of how I used to plan monthly themes and lessons for my boys. One month was “Goodnight Moon.” Titus loved that book. His first year of preschool, they had a program where they could borrow a book over the weekend from the library. His first weekend after school started, he brought home Goodnight Moon. It gave us all a good chuckle. He obviously missed the point of bringing home a new reading adventure. We read from the school copy all weekend, sent it back on Monday, and continued reading it over and over again with our copy at home in the months and years that followed. I did my mommy duty and pinned all the good stuff to teach language and comprehension from Goodnight Moon. We had a yellow chart I hung with pictures from the stories. We played matching games, made a storyboard, and practiced our words.

Ely interrupted my remembering as he hopped down from his snuggle-spot and ran over to the stuffed animal basket to grab “snake”. You might like to know we also have “duck”, “doggie”, “neigh”, and “Dumbo”. But “Snake” is kinda special. You see, I’m terrified of snakes. I downright can hardly even look at them! My brother knows this about me and has plagued me with images, videos, even real snake skin to watch my fears flood out of me in tears, screams and quick sprints away from the scene of danger. I’d like to say he’s grown out of this and that he’s matured now that he’s in his 30’s.

He hasn’t.

But I have grown in tiny steps to conquer this fear. Perhaps to some of his credit (Thanks, Brad). But also to some of the credit of having boys.

It was Titus’s second trip to the zoo. We went into the store at the end, knowing we’d likely buy something for him. I was thinking something cute and furry. He had other ideas and went straight for the snakes hanging down the far wall of the store. I felt a shiver and chill go down my spine. No joke. I tried to detour him to the penguins, or perhaps a cute fluffy lion. But he had his eyes on a green and black snake with yellow eyes, his favorite color, of course. After an inner dialogue that I needed to be the adult and this was truly a stuffed, fake animal and was not going to suddenly come to life and eat my whole family in the middle of the night, I said ok. Titus sat behind me in the car and all the way home he threw the snake at my head pretending it was attacking me. Lovely. What a boy. But it made all three of us, Titus, Daddy and I, laugh.

Ely climbed back up next to me, snake around his neck, the remaining part stretched out down next to me and again I wonder at my growth as a mom. Today didn’t feel like growth. I felt stale, depressed. I cuddled that snake and that cute little boy of mine in close. One tear fell down out of the corner of my right eye and I wondered at how it escaped without company. Perhaps it was just enough to remind me that I could still feel. I was still here. And yeah, this life still hurt. Deeply.

So much missing. I should clean the bathrooms. But I can’t. Nothing will work, hardly even my mind which is normally going a million miles a minute. I breathe, Ely breathes. I feel him, hold him tight. I used to feel Titus next to me this way. Right up to the moment he took his last breath. How I miss him. My heart aches and yearns to see my two boys together again. I can’t wait to see the two of them play and adventure in a pain-free, joy-filled place.

These days here feel so permanent. Hard. Like swimming through mud, they can be dark and difficult to move through. And yet I keep remembering that this is all so temporary. Sometimes that helps. Other times it feels like the voice reminding me of this truth is Charlie brown’s teacher and I can’t understand a word.

There is a resolve in me though. And knowing my current state and condition, I know it’s not a resolve of mine, but of the One who is greater than all this pain and heartache. I’m held. Just as I am gifted the moment of holding Ely. I breathe. My Abba – my God Almighty who fights for me, breathes through that breath and gives me courage to take another. We repeat. I’m not conquering anything today. But I’m doing great soul work in just being.

This is hard. Breathe.

This is painful. Breathe.

I’m not alone. Big deep breath.

It’s okay if all I can do is lay here next to my son. And just breathe.

Thanks for listening,

Bekah

Remind me again, please

Featured by youcantstealmyjoy

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that won’t disappoint. 

He keeps his promises.

He will redeem.

These statements have been running through my mind a lot lately. This month has proven to be an emotional roller-coaster for me. I found myself scribbling these truths up on the giant decorative mirror in our dining room because I needed to be reminded… often. Truth needed to be spoken to my soul, over and over and over and over.

Today, my baby sister and her hubby celebrate 3 years of marriage. Flashing back 3 years ago, I had barely made it to the wedding flying in at midnight on Friday night with little Ely in tow. It was supposed to be the whole family on the trip, Titus given the honor of ring bearer and I, the matron of honor. But circumstances didn’t line up as such and we left Danny and Titus back home occupying a room on the neuroscience unit at our children’s hospital. Titus had been hospitalized, yet again, for uncontrollable seizures. He spent long days there as they quickly weaned him off one medication to put him on yet another in an attempt to gain control over these seizures. It was heartbreaking to leave them behind. Ely and his cousin, Colby, did a wonderful job standing in as the ring bearers in Sarah and Michael’s beautiful wedding and we flew home at 6 am Sunday morning to be reunited with the other half of our little family. I remember arriving home, knowing Titus had just gotten discharged. Danny had made an extra stop before heading home to buy kites. (This was one of those moments I constantly thank God for gifting to us and prompting Danny’s heart in this way.) We joined them out on the big grassy park right by our house and watched daddy fly a magnificent shark kite. Neither of them had ever seen a kite before. I will never forget the excitement, awe and pure delight exploding out of each of our boys and it was contagious. I felt it too.

November 16, 2014. Kite flying. A memory forever written on my heart.

We had just plowed through one more obstacle to help our little boy and we celebrated that, but deep down in our guts we were unsettled, feeling as though something was coming – that we weren’t in the clear. We’d learned by then to enjoy the moments, but not to let our guard down. That year, 2014, Titus was the same age Ely is now. We had no idea what was actually lying in wait in both our boys’ bodies.

My heart aches for what could’ve been had Titus received an early enough diagnosis to get in to the enzyme replacement trial that opened just shortly after that kite flying day. But we didn’t, he didn’t. We had no idea what we were facing. And I constantly have to come back to…

“This is temporary.”

“God will redeem!”

“He promises a hope that won’t disappoint.”

“This isn’t over,” I say to myself as I ponder that beautiful memory 3 years ago. Titus’s story has not ended and someday we’ll be together with Christ in glorious bodies – perfect without disease! That day will come. And in the meantime, redemption is here too.

God gives us joy in the midst of heart pain.

He gives us peace in the middle of turbulent waters.

He gives us strength under weighty grief.

He restores my soul when the circumstances of this world and my own destructive patterns shatter it.

He gives direction and a sense of purpose in a dark pit that feels impossible to move from.

These are all signs of his love, his involvement, his redemption. This is God. Here and now.

So, until the day all is fully redeemed and restored whole…

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that will not disappoint.

He keeps his promises.

He will redeem.

May truth hold our minds, hearts and souls captive in the midst of our heartbreaks, disappointments and sorrows.

Thanks for listening,

Bekah

Schlumpy, much?

Featured by youcantstealmyjoy

I have been consumed lately with what my heart looks like. I am overly perceptive of how I react to things, mentally putting the information away into my file cabinet of “interesting” to go back through later. My reactions are wide and varied. My son fell off the bed a few weeks ago and hit his head straight on the tile floor. There was nothing I could’ve done in this particular incident to stop the fall except to prevent him from getting on the bed in the first place. (Which is now a rule… that gets broken repeatedly.) As I rushed to his side, surveyed the possible damage and held him close rocking him, I was alarmed at the reaction I was forced to shove down through deep breathing to maintain sanity. The anxiety, the sweating, the heart pounding, the hands shaking, the tears close to pouring over the rims of my eyelids… all of it came on in a matter of seconds without a choice. My brain was hijacked by the memories of previous traumatic experiences with my boys and their disease and the adrenaline fed the fear and high emotional reactions. It took a long time to calm back down and get back to a place where I didn’t feel so out of control.

Other times, it’s just little things that happen that make me reflect on what is truly going on deeper down inside me. I’ll be trying to have a conversation with someone and I simply just can’t. I can’t think of the right words, I can’t think of  a complete thought, I can’t process what they are saying. It’s awkward! And then there are the moments where I find myself defensive for absolutely no good reason. Still other moments, I actually feel a bit normal and able to function without having to think too hard about it, which believe it or not, throws me for a loop too.

On a daily basis, I seek to really live (meaning, I’m present) despite all the reminders around me of our pain and grief and missing. My emotions go from joy and creative passion to absolute dread and exhaustion. And in between is this numb sort of place where I do most of my living. I numbly work, I numbly exercise, I numbly take care of my family, I numbly interact… but wait, am I really living then? I call it “schlumpy”. Is that even a word? I guess it is now!

As I sit in my schlumpy-ness, I wonder at the state of my heart. Is it too hard? Is it becoming stone with thorns surrounding it? Is there beauty in there somewhere still waiting to be discovered or have I used all that up and am doomed to be ugly and broken for the rest of my life? What shape does my heart even hold? Like a broken nose that never grows back quite straight, I imagine my heart has been broken enough that it cannot look normal. Is it twisted and ugly or has it taken on a new refined, yet wild natural beauty? Maybe yes to both is the right answer. How can it not show the scars and the damage it has endured in this broken world? Yet there is a living being in that heart. It’s the Holy Spirit; God himself taking up residence in me. How He can find my heart to be a perfect home, I have no idea. But what I believe to be true is through the vines of the thorns that have grown around as a result of disappointment, hurt, selfishness, anger, loss, and pain, is a light. A pure, full spectrum color, dynamic light that beams around and through and inside out. It puts a spotlight on the brokenness, but not in the way I would expect it to. Prisms of color I have never seen before as a result of the light hitting cracks and awkward angles, bursts out. As those colors beam brightly, I see that growing amidst the thorns are actually beautiful roses. Without the light, I wouldn’t be able to see them, the darkness camouflaging them, trying to snip them off the vines with the scissors of nonexistence. But nonetheless, there they are. Growing. Beautiful. And I’m left to wonder what in the world to do with them. Am I uncomfortable with them being there? Those roses are a signal of life still at work. That death has not won and there is still life to be lived; missions to accomplish. Do I snip them off and say, forget it? Tending to these roses takes work… too much work. I would have to feed them, water them, provide them with sunshine and plenty of room to grow. It would require pruning and caring for new growth. And that is hard. Really hard. And right now, I’m schlumpy.

But I’m reminded, with a gentle prodding, that there will be a time to care for those roses, but there is also a time to sit back and allow the joy found in these beautiful buds to just be, simply because. Not because I did something to earn it, deserve it, or make it be, but simply because joy gets to exist in the presence of my God… the one who lives right inside of me. It’s one of his many characteristics, one of the deepest and most profound for me. Joy and schlumpy can actually exist together for a time, but then joy gets to win. Is it happiness? No. So what is joy in the mess of this heart of mine? What is it in the mess of this broken world and the complicated back and forth that is living in between broken reality and hope of redemption?

Joy is not a what. It is a “who”.

Who is my joy?

My joy is Jesus.

Jesus who loves beyond brokenness and faults, gives peace throughout this journey and redeems the in between and now, but also the future forever. Joy does not mean I carry a happy flag around. It means I look to Him for strength, for hope, for sustenance. It means his love reflects in and through me. And when life gets schlumpy and weary and I-just-can’t-do-this-anymore, I know my joy is not lost, because He is not lost. Jesus has never left my side and will always be there as my hope and joy no matter how dark this reality can get. Am I blind? Am I romanticizing this too much? How can Jesus really be enough when I feel the dark depths of depression and the wild ride of anxiety creep up on me?

I guess you’d have to know and believe the end of the story. The one where Jesus has conquered the very darkness that has settled in a dark cloud over our household… death.

Death… so separating, so lonely, leaving me to grieve the finality it is for all of us here on earth. Yet, only in this world is it final. Jesus has the final say. When he went to work and went to the cross and died for us, the very resurrection of his life showed the victory he holds over death and ALL things evil. His death and resurrection reflects across the brokenness of my heart with one big loud “I LOVE YOU” and “You are worth this sacrifice” and more, “You are worth this VICTORY”. Death, hate, pain, grief… all of it is redeemed – made right- through this great love story. All he asks is that we believe him! That we believe he really does love us. That he really has won. That this brokenness is redeemed and someday, we will never experience this pain again. For now God gifts us with hope and joy, also known as Jesus, in our shaded, fractured, damaged, despairing, gaping wounded hearts. Mission accepted… even in my schlumpy state, for my heart longs for all that you are, Jesus.

These are my hope and joy gifts…

 

Memory bears gifted to us. Made out of Titus’s clothes.
Fun at Goofy’s Kitchen
My “joy-boy”
Look at me, mom and dad!
fun at hippotherapy!
always an adventure

 

Thanks for listening,

Bekah

Roommates

Featured by youcantstealmyjoy

The first year of loss consumes me. Every experience held has a deep painful reminder that one certain joy-filled boy is physically absent. I am overly aware of the grief residing in me and the effect it has on nearly every interaction, every experience, every day I live through since we got the diagnosis, watched loss happen in front of our very helpless eyes, and ultimately said a painfully separating good-bye-for-now to Titus. Each important date, each “anniversary” feels like it is lurking around the corner ready to strike my heart in a deep, painful way. Yet another reminder of what we have lost. Life, for me, has become trying to understand how all these broken pieces now fit together.

It’s messy and painful and sometimes hard to find the way. Something will come  along and shatter part of me all over again and I realize the puzzle will never go back together whole. Rather, it will have juts and cuts, and holes and slashes. And the only whole I can cling to is the Holy Spirit in me. He is what fills – no, shines! – through the damage. God begins to weave back together a beautiful mosaic, but it is not without pain. It is also not without joy! The two reside together in their home in my heart and soul, learning to become roommates. They couldn’t be more opposite, more conflicting! The struggle is in finding a way to live balanced – not where I ignore them, but where I allow myself to feel both and see, with Jesus eyes, the redemption at hand here in us, in the world around us, and in the wholeness that has already happened in my son.

There used to be a time in my life where things just sort of always worked out. Everything from jobs, big moves, and friendships came together exactly as we needed. I remember back to when I was standing on my back deck in my home where  I grew up. I was 15. I was declaring my love for God. I told him my life was his. All His. I went on to tell him I wanted to shine bright for him. I still remember this moment so distinctly because He spoke in me. I remember the feeling… it was like a quiet booming that was ricocheting around inside me resonating not just in my ears but into my heart and deeper still, into my soul.

“See that star?” He said. I looked up. I saw it… the brightest star in the sky to my visible eye. “You will shine brighter than that star for me, daughter.” In that moment, in my 15 year old mind, I felt chosen for great things. Pain did not cross my mind, not once. And, looking back, I wonder if it ever crossed my mind what a huge commitment that was when it came to trust Him, even though __________ (fill in the blank).

Even though I would struggle with depression to the point of wanting to die in college.

Even though once I entered the real world and the real job force, the days got hard and I didn’t like doing the hard stuff.

Even though we would pick up and move from security and established comfort zones multiple times.

Even though family relations were sometimes difficult to manage.

Even though we would have babies who taught us what sleep deprivation was.

Even though our boys would be diagnosed with a rare and fatal disease.

Even though we would hand our oldest son back to Jesus at the age of 6.

Even though there would be no reprieve from the rare disease world as our youngest would battle the very same Batten battle his brother was just freed from.

Even though we now have to live in a world seen now through a film of grief, welcoming it as a new friend.

Even though… I will trust in you God and you have all of me.

You see, as I fast forward through my life, I see God using me, using us. The world sees His goodness in this dark time. This world is broken, but there is still hope for redemption. Not just future redemption but redemption right here, right now.

So, while I live in this new world of grief-lined perspective, joining hands with my grief is hope. As the sorrowful streams of grief rise up, around me hope says, “Here I am. Ride that wave, feel it… I won’t let go.”

When grief reminds me of what I’ve lost, hope reminds me of what I still have to gain.

When grief shreds my heart to a million pieces, hope takes those pieces and welds them together in a new and beautiful fashion.

20170625_161524(0)
Fun with water out on the back patio
moments_9c0d56f7-cf9f-41e4-a086-1e7cedb4b752_orig_res
Taken right by where Danny and I got engaged over 12 years ago! (The exact spot was under water!)
20170620_183100
Ely having so much fun at grandpa and grandma’s house!
20170611_175513
On our visit to the beautiful Red Bridge Farm in Washington!
received_10158926341540641
Ely celebrating his “graduation” from the clinical trial for the enzyme replacement therapy program at Nationwide Children’s Hospital in Columbus, Ohio. (He continues treatment at home now.)

Grief and hope, pain and joy. I grab on to both sides. Grief and Pain are the reality of this world… Hope and Joy are the reality of God.

Thanks for listening,

Bekah

It was you

Posted on by youcantstealmyjoy

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.

Duffy boat fun

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

 

My birthday boy

Posted on by youcantstealmyjoy

Happy Birthday, my sweet Titusaurus!

My mind was swirling last night. So many memories playing like a roll of film from your first birthday to today. Titus, my heart… it aches. I remember you and I smile and even laugh, but then I cry. It’s complicated, this grieving and joy partnership.

I remember your first birthday so well. We had two celebrations that year. One just before your actual birthday so we could celebrate with the family in town visiting and the other was just you, me and your daddy. I slaved over these legit rubber ducky cupcakes. Man, they turned out awesome. (By my standards anyway… Ok, let’s just be real. That was actually the best “cake” I pulled off your entire life. It was downhill from there!)

P1010042.JPG

With a candle in the cupcake and all, your eyes lit up as you watched the rubber ducky cupcake in my hand sway closer and closer to your tray as we sang. You reached out for the cupcake and it promptly crumbled in your hands. Confused at first, you looked troubled at your hands, at the cupcake, at me. And then you started to cry. We are pretty sure you thought your favorite toy was broken. There was no going back from there. You refused to try the cake and I had to clean you up and get you down. Sorry buddy! (It was pretty hilarious, actually.) And then on your actual birthday, I decided you MUST try your birthday cake or it just wouldn’t really be your birthday. I took a few crumbs, yes crumbs, and set them onto the front of your tongue to just give you taste, sure that you’d be back for more as soon as you figured out chocolate was REALLY good! (It’s in your genes to love chocolate after all.) And in true Titus fashion, you delivered the unexpected. As you started to move it around in your mouth, you began to choke. Not because you couldn’t handle the few crumbs in your mouth, but because the texture of the cake really threw you off. I watched you smack your mouth trying to process the texture and then it happened. All my slaving in the kitchen making those homemade rubber ducky cupcakes was rewarded with a tray of vomit. Awesome. But you got those crumbs out, so you were good! Oh Titus, those are just the kind of memories that keep me laughing for years to come.

Your second birthday you discovered the joy of singing birthday cards. You had family surrounding you on this birthday too, everyone taking in your joy and wonder of the Mickey Mouse Hot Dog song coming out of a piece of paper. We laughed and laughed and laughed and you thought that was pretty cool too. And did you want any of your cake? Nope.

Your third and fourth birthdays were low key, but fun. We had friends over, played, and finally, FINALLY, you tried one of your birthday cupcakes. And you found that you do actually like chocolate cake. Whew! (Your silly brother still isn’t convinced.) I look back on those simple birthdays; I was never great at planning a big party. Most of the time, any plans that were executed were last minute. It was a good thing we had friends who were willing to fly by the seat of their pants and jump on those last minute invitations. I always had Pinterest-level intentions for your birthdays, but let’s face it… that is just not my gift. But fun was always had. For your 4th birthday, you got your first bike! You could’ve cared less about the actually biking activity, but you loved sitting on that bike and pushing the button making your Thomas the Train bike “choo choo”. I still remember standing out on the driveway that year as we surprised you with that bike. I can’t believe we only had two more birthdays with you after that.

Your fifth birthday was complicated. It was following your diagnosis of Batten disease. You had lost so many abilities you once had. But that morning you woke up so happy and energetic. You loved birthdays and found joy in calling your friends and family to sing happy birthday to them over the phone on their special days. I told you it was your birthday and you lit up. You couldn’t see much anymore, nor could you walk or speak words. But you felt the love. And once again, in true Titus fashion, you were one crazy, wild boy that day. You somersaulted, you flipped around in our arms screeching and laughing and begged for us to blow raspberries on you. You kept us smiling that day even though my momma heart ached that as you got one day older, that was one day closer to when I would no longer hold you in my arms. And that hurt.

Birthday number 6 held the same emotions. We had watched your body decline so much. Your birthday always falls on or near memorial day weekend and that day our church was holding a big picnic at the park. We knew it was going to be hard to take you out for too long, but wanted to give you two things you absolutely loved: being outside and being around people. When we arrived, there was an adorable cake decorated just for you buddy. Dinosaur and all. We laid out on the grass for a good part of the afternoon and enjoyed the company, the fresh air and the snuggles with you. You were so content and looked so peaceful. It was nothing extravagant, but it was good.

Today, I struggle. I think of how this birthday would’ve been if we still had you here. I know you’d never be able to celebrate your life here like you are in Heaven. And for that, I’m relieved and thankful and filled with hope that you are fully healed. But my mind wonders at what it would’ve been like to have had you without Batten Disease stealing you away. To have celebrated your 7th birthday as a typical 7 year old. I wonder at what your interests would’ve been, what you would’ve requested for your favorite meal, who your friends could’ve been. And I really, really hurt over not being able to wake you up singing a goofy version of happy birthday and kissing your cheeks and tickling you. So many emotions run through me in a single space of time; anger, joy, sadness, confusion, hope, and lots and lots of love. We started the day with the movie Land Before Time. I needed some dinosaur noises in the background. I’m drinking tea out of my Lion King mug remembering how much you loved that movie even after losing your ability to communicate. You’d laugh so hard when you heard the opening note of Circle of Life.

You find a way to be on my mind all the time. And I miss you, all the time. I know, without a doubt, your adventures are great in Heaven. And each day that passes is one day closer to getting to feel one of your big giant-sized hugs once again.

Happy Birthday, Titus.

Love,

Your momma