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

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

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 anchor

Yesterday I was in my living room planning a service for my six year old, Titus, who’s life ended here on this earth on Sept. 17th, but began forever in eternity with Jesus. Today, I’m sitting ocean side on a crisp cool morning. My husband is still asleep in the room behind me, Ely at home with family, so Danny and I could get away to celebrate our 11th anniversary. I think back to that day 11 years ago… had we known then what we were in for, I can’t say for certainty those two young twenty-somethings would’ve gone through with it. Quite possibly, both of us would’ve bolted. We would’ve heard all the hard and terrible we’d have to endure and I’m sure we would’ve determined that it just wasn’t meant to be… that God would never hold such brokenness in his plan for us. And, therefore, we must run and find another destiny. A happy destiny.

But there was no such crystal ball, no angel announcing the news through visions in our sleep. So, we followed what our hearts knew and we knew we loved each other. And when I look back, I don’t see a big, giant mistake. I see LOVE. It’s messy, sometimes muddled, sometimes bright and brilliant, but it’s always there. It’s not a flitting rush of love, it’s a deep anchor of love. It’s an anchor that has stood deep and strong under currents of job changes, big moves, having babies, raising young children, losing one of those precious children, and traveling across the country twice a month to attempt saving the other. It’s stood deep under currents of arguments, selfishness, pet peeves, expectations, broken relationships, healed relationships, old friendships, new friendships.

And where did this anchor come from? When we declared our love to each other on that day 11 years ago, our vow was to love each other NO MATTER WHAT. Through it all. And we really meant it too, but the thing about words is that they can lose their potency over time. So we didn’t just vow this to each other. We came to the altar of our Lord and requested His guidance, His strength, His perseverance, His joy, His wisdom, His love to be in us. For always, no matter what.

 

I’m watching the ocean waters roll and crash in over and over and over again. It feels calming, but in a way, it reminds me of our life. Wave after wave crashing over us with little time to stop and catch our breath before the next one rolls in. But I still can’t see the waves as all bad. There are gifts in them. As they wash over, we come up grateful for the next breath we get to draw. We re-set our perspective and notice things differently. We look from side to side and see others enduring the ride of the wave too. All the sand and gunk that built up on us while sitting in still or retreating waters is washed off as another wave crashes over. It becomes a wake up call, a refresher, an agent of focus on what is really important. There are so many gifts. And as these waves hit us, I’m thankful for the biggest gift of all. His steady anchor of love that holds us together through it all.

God’s anchor will not move and He will always hold on to us. I hope you’ve found His strong anchor too.

Happy Anniversary to my love, the one who clings tightly to the same anchor I do.

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Thanks for listening,

Bekah