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

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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