My birthday boy

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!)

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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

Roommates

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.

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Fun with water out on the back patio
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Taken right by where Danny and I got engaged over 12 years ago! (The exact spot was under water!)
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Ely having so much fun at grandpa and grandma’s house!
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On our visit to the beautiful Red Bridge Farm in Washington!
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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

I am a mom

What does mothers day hold for me exactly, as I live out bits of other moms’ greatest nightmares and fears? Honestly, mothers day for me has become a paradox. Confusing, too. The truth is that a part of me wants to pretend this day doesn’t happen and ignore everything in me that squeezes tight. The other part of me wants to climb to the tallest point and declare loudly my role as a mom. I am a mom!

I am a grieving mom.

I am a broken mom.

I am often a sleep deprived mom.

I am a grouchy mom.

I am a mom who battles against weight gain.

I am a mom who struggles to find balance.

I am a mom who snaps and yes, sometimes even yells. (I might even slam a door or two.)

I am a mom who grows impatient, feels insufficient and sometimes just wants to stay in bed.

I am a mom who has placed value in how well her kids are doing.

I am a mom who sometimes worries about what others are thinking as I parent in public. (And sometimes, I truly do not care.)

But… more importantly…

I am their mom. Titus and Ely’s.

 

 

I am a patient mom.

I am a caring mom.

I stretch myself to places I didn’t know I could go to be their mom.

I am an advocating mom.

I am a dedicated mom.

I am a mom who’s heart is torn apart and put back together in new ways as a result of being a mom… and it’s beautiful.

I labored for hours (and in Titus’s case – days) to be their mom, and that labor hasn’t stopped. It has just changed so I changed with it to be their mom.

I am the mom who kisses boo boos and apologizes when she gets angry.

I am a mom who searches for adventures for her boys to experience.

I am a mom who held her son through to his last breath and had the holy honor of ushering his spirit into the arms of Jesus.

I am a mom.

Moms,

We are patient, we are impatient. We are loving, we lash out in anger. We are teachers, advocates, coaches, therapists, fighters, and mediators for our children. We also are the first in line to show our kids how to screw up and treat others wrongly. And in turn, the first to show our children how apologies, forgiveness and grace operate in a broken world.

What a horrifying, painful, beautiful and fulfilling role to be placed in… mom.

It’s different for me this year, as Titus’s transition to Heaven as left a big hole in my role as mom. But as with everything in life these days, my heart approaches mothers day with grief and hope holding hands. My pain is held within God’s promise… a promise to redeem. 

To redeem not just my son’s disease, death and our separation as a result, but to redeem all the ugly parts of me, the places where I’ve failed as mom, wife, daughter and friend. And because of His promise, I enter my day knowing we experience redemption right here, right now. Otherwise, I wouldn’t be able to do this… write and tell our story. It’s a link in my redemption story.

So yes, I am a mom. So are many of you… maybe even in ways that don’t look “traditional”. You are still a mom. But even more importantly, you are a redeemed and loved daughter of our God –  a king who will one day make everything complete and right. In the meantime, He wraps us up in hope and joy filled blankets as we hold pain and grief, failure and loss in our hearts… because we are moms.

And you, my dear friend, are a beautiful mom.

Thanks for listening,

Bekah

No time like the present

I walked into my living room after laying Ely down for nap and it was a disaster. My couch was all torn apart, pillows on the floor, everything in every toy basket seemed to be emptied all over, bringing the risk factor of navigating my living room to somewhere between high danger and impending doom zones. Blankets were slimy, wet and smelly and a stench of “poop” hung in the air.

Normally, I huff, take a breath and begin the clean up process knowing that in an hour or two when the little guy gets up from his nap, this is going on repeat. I know, I know… I should ask my son to help with the clean-up. I mean, I do…. Sometimes. It’s just not his gift. Titus, my oldest, now he could clean! That kid would clean up after me! And if I put something in the wrong place, he’d correct it. It didn’t take much to convince him to clean up. Ely, well… his gifting is to destroy things in Guinness Book of World Record fashion. Don’t get me wrong. I still try to instill these housekeeping values in him and encourage him to help mommy “ea up” as he says it. But there are days that takes more energy than the actual clean-up process itself. So today, I walked into this catastrophe lone soldier style. I took a look around to survey the damage and assess how long this would take. Those “nap minutes” are precious to me.

In my pause to look, I felt something well up inside me. Was that really what I think it was? Yep, thankfulness. Maybe it was because just a few hours ago, I was reminded yet again how little we are really guaranteed in this life and how dependent I’ve become on the hope and grace of Christ to be my enough. A text had come through on my phone from my dear friend who has begun the end of life stage with her sweet 6-year-old son, navigating painful, horrible and precious moments. I was rocked back on my heels of emotions as I replayed that very stage I just walked through with my 6-year-old son Titus, just a short 6 months ago. The disease ripping her son from her arms and requiring a far too early goodbye wreaked havoc in my household as well and we are learning to live in this place of pain and missing, yet holding on to the hope of redemption, wholeness and the promise to see him again someday soon.

“How long, Lord?” I asked out loud staring at the mess. “How long do I get to clean this up day after day?” I miss so much the mess Titus used to make. Yes, he helped clean up so that made it nicer, but really…. The dinosaurs meeting up with the trains on our ottoman, the cars lined up neatly in a row all facing the same direction ready to play out whatever imaginary adventure he had prepared in his mind. Duplos… everywhere. The bowl of cereal there to snack on that wound up getting crushed into the rug more often than not (oh wait… that still happens). Those moments with Titus are now just a memory and gosh, I miss them. So, I stared at the couch cushions resting haphazardly on the floor, the blanket that had been sucked on leaving sopping wet corners to hang. The stuffed animals sprawled everywhere, the dinosaurs hiding beneath the blankets, waiting for me to step on one of their spikes, and the other odds and ends that seemed so random. I’m not sure they even had a purpose for being out except as collateral damage in the 3-year old’s wake.

I stood up on the aforementioned ottoman and snapped a couple pictures. Yes, I want to remember this. My 3-year-old, Ely, isn’t guaranteed a long life either. I mean, who is really, but most of us expect it. But Ely is plagued with the same fatal disease that took his big brother at the age of 6 years old. And I know I’m given a gift because I can’t afford to take my days for granted; to huff and puff about cleaning up toys and messes. I embrace it because it is my son’s presence. He’s living and breathing here in my life right now and I don’t want to miss that. I would never wish this pain on any other mama. Ever. But I do hope and pray that my story helps others see the gifts in their lives that are wrapped up as inconveniences, frustrations, and unexpected stops. I don’t want to give anyone a guilt trip. I want to provide an avenue for a perspective shift. I almost sit down among the mess and let it be. But I don’t. I clean it up and every breath breathed holds a prayer for both my boys, for my husband, for me, for my friend. Such fragility, this life and yet, so vibrant that I can feel His spirit moving in me allowing me to glimpse His kingdom in the midst of such mundane things. Joy carries my soul, hope lifts it, and grace allows me to embrace. May we all be stirred in such places as our living room, among stinky, slimy blankets and sharp weapons disguised as children’s toys.

Thanks for listening…

Bekah

The escape plan

I was sitting at a red light so I quickly clicked on my notifications to see what I might be missing or need to know. Out of the corner of my eye I noticed the light turn green so I took my foot off the brake to slowly roll forward while I clicked my phone off and put it away. After all, I don’t text and drive, don’t ya know. Only when I’m at a red light. “Whoooop Whooop” rang in my ear, a quick blip of a siren. I looked in my rear-view mirror and realized to my dismay, it was intended for me. I sighed and my shoulders slumped as I pressed on the gas, turned through the light and pulled over noting the time. Yep, my son will be late to school today. And then began the pleasant conversation one has with a cop after being pulled over. You know, the one where he asks what business you had on your phone that you needed to do it while behind the wheel of a vehicle in drive. Ugh. Nothing important and it was just plain stupid. And I pulled away with an extra piece of paper when we were done. No tears spilled, although they were close, but my ego took a big hit. All day I’ve been contemplating this experience that started off this fine, sunny, beautiful Thursday. I dropped Ely off at school, jumped back in the car (feeling a bit grouchy about it all) and drove home. I pull up to a red light. I sit there for a moment. Geez, it’s quiet. Automatically my hand reaches for my phone! Like it seriously did it all by itself! I caught myself just before turning it on and threw it back in my bag. What the heck, Bekah?!

I had to drive that same exact trek 6 times today. Once to school and back for drop off. Then to school and back for pick up. Then to Ely’s occupational therapy and back (which is just down the road from his school). You’d better believe my phone stayed put inside my purse, but my mind went crazy. I made a couple phone calls on one of the trips (using hands free bluetooth of course!), the others I would turn on the radio. And I started to worry about my inability to sit in the quiet. The quiet can be a little bit scary for me. The undistracted can be an emotional abyss that looks dark and looming. So I look for an escape plan. One that takes me someplace artificial so I don’t have to deal in the real and vulnerable. And it’s become a bit obsessive. It doesn’t always look like Facebook, texts or phone calls. It could be a fictional book. Or food. Or TV. We all have our list.

In all my driving today, on my final trip home, it hit me. I’ve been looking for an escape plan through all this because my mind is pleading for a break. It’s begging to run from pain. My nervous system is operating at maximum sensitivity levels and it doesn’t take much to push me over the edge. This is my daily struggle. The one where I’ve become really good at pushing back the emotions because they might make me or someone else uncomfortable. Choosing the superficial and surface escape route is much easier. Oh how I grow tired of it. Even when I’m caught up in the act of distraction, my heart grows weary of it and yet I don’t stop. What might be on the other side if I do?

It’s the season of lent. The season where we pull back, we sacrifice, we take away, we re-evaluate, we pray more, we become aware of ourselves and our need for God. We stop turning to our own escape plans and turn our full attention and focus on THE escape plan. The one where God sent his son Jesus to this earth to sacrifice his life in order to save ours. That escape plan.

So what will I find on the other side of distraction and faulty escape plans?

I will find a God who heals. And, yes, while I believe God can heal physically, well, the truth is, that hasn’t been my personal experience. I’ve watched so much death happen. Even right here in my living room. But I have to be a person who is willing to remember! Remember how He has carried and continues to carry me through. To remember the fullness of life experienced right smack in the middle of the most broken of times. To allow the healing work he is doing in me to sink into my soul and be a healing balm to my wounds… ones that I will carry with me for the rest of my life.

My eyes tear up when I see another family with needs like our own. And that distraction tugs. The uncomfortable sensor goes off like a siren! But I want to say, so what? That reaction is God’s heart in me. Let it be.

I feel the jerk of my heart beating like it’s reminding me how very alive I am and how gone from this earth my son is. There is that sensor! Distract! Distract! But I want to say, so what? That is a momma’s heart, each heartbeat is a heart-bleed because I loved and still love big. But instead of clotting off that heart-bleed with distraction, I must let it run. For it is his blood that first ran to give us freedom in His love and grace. It is his broken body that made us whole. And it is my broken heart, bleeding all red and love that is finding healing.

My healing doesn’t look pretty. You should hear me in my therapy sessions when I start crying. I choke things out, sometimes my breath comes into my lungs super constricted and wheezy. But I am reminded that in Jesus’s most broken state, all things were made new and He was beautiful. He did not distract from His mission. A mission to rescue his most dearly beloved… you and me.

So…

I’m going to put down the phone, yes even at red lights. I’m going to get comfortable with silence. I’m going to cry when I feel like crying. I’m going to hug someone when I feel like they need it. I’m going to walk into brokenness knowing I’ll want to run. And I’ll run to Him.  And I know I’ll be able to do it because it is HIS strength in me, reminding me that all is not lost or broken. And in fact, redemption is here and it is for all. Because that was His ultimate escape plan for us. 

Thanks for listening…

Bekah