I don’t have much to say today. Based on this post’s time stamp, you can deduce how sleep…just isn’t easy on September 18. Perhaps rightfully so.
That said, I want to set a friendly reminder to all who believe and profess the name of Jesus to stay intentional in making room for Him. As recent Mercy devos have reminded me, there’s a sweetness in meeting Christ in the incarnation, delighting in His Immanuel presence, and declaring His Hosanna. All day, every day, He’s in the business of being with us, His arm never too short to save and settle what we’re meant to cast upon Him.
For me and the fam, we will be visiting a couple places today to remember Juju in a way that allows lamentation to become celebration. For those wrestling with grief, we must understand both realities have their place and must be entered into with expectancy. When we lament in the Biblical sense, we’re not only emptying ourselves before God in vulnerability but surrendering to His Lordship in confidence.
Applied to the road, think of lamentation as the slow-down before the yield. To drive defensively in this situation, one must prepare the car’s direction by first adjusting the speed necessary for it to align to the proper course. In many ways, this is how we should view the heart when we’re asking God for help, relief, even salvation. When in doubt, slow down, anticipate the yield, and invite God into your space.
Once your inner man is at the right speed, sound out your gratitude and heartache in praise knowing there will be glory after this. To me, this is the beauty of lamentation given it’s almost always the first or second leg in our immediate journey to refreshment and release. Although it’s never a straight line, you can count on it as a bee-line to the Father’s heart of love.
In due time, some media will emerge as snapshots on the wall of a day done well; however, if you’re reading this, you now know the framework, the ‘why’ if you will. Wherever you’re at, whatever you’re going through, understand lamentation is more than the expression of sorrow meets honesty, but a key way we say ‘yes’ to God as we make room for Him. Be encouraged to go and do likewise.
It’s another sultry evening in west Nash as I type this. I don’t speak on my behalf when I say I’m glad recent storms have finally subsided.
For most of you reading this, you know how much I love storms. When I’m in one, I’m one step closer to awe – one step closer to life making more sense. After all, the winds within are never far away.
Of course, you wouldn’t know it given the script of 2023’s first half, a stretch in which the theme of forced rest amidst evolving pursuits have re-emerged. While the in-house volume has emphatically increased, in several areas of life, Lys and I have been forced to mute the noise to maintain heading.
And so it is, I pen this post during the last normal weekend for the foreseeable future. Houston, start down the countdown. We’re less than six days away from the final small Fry making her arrival.
While much attention this year has been given to the Juby Journey book, occasionally, it helps to zoom out to 20,000 feet and refresh a different page. Personally, I find the practice not just helpful but vital – a necessity during such disorienting days.
This dichotomy, man. It’s unlike anything I’ve ever felt and likely will ever feel again.
On one hand, the grief of losing Juby last September has finally started to subside. Slowly but surely, Lys and I are getting there though as I’ve said before: You can’t ever quantity a journey through grief and its cycles. You can only paint a picture through watercolor language. Even then, you’re talking about a mere speck on a 10′ x 10′ canvas of emotions. We’re moving in the right direction – an oasis there, a ray of sun there. Maybe someday, we’ll be out of the woods for good.
On the other, you have the anticipation of Aili, a golden surprise in what has been the smoothest pregnancy by a wide margin. Such a sweet kiss from the Lord as part of a redemptive narrative unfolding. Who would have guessed it based on what happened two years ago around this time?
Still, when you lose a child, you’re never the same again. And you certainly feel the rift when joyous occasions are on the horizon. As Lys and I shared in our Vandy grief support group in April, when you go through something like what we did last year, an organic strengthening occurs when perseverance is compelled to a life on the lines, when hope is forced to the end of its rope. Eventually, there are moments when the despondency softens and you realize you’ve made strides in becoming the person you’ve always wanted to be.
But there is a cost, one tracing back to that same hope ironically enough. While endurance may have fortified your faith, your capacity to positively anticipate is broken, at least bent. And it’s here where the bizarre paradox starts to unveil. Yes, you’re grateful for the forging through fire. Still, you can’t help but wonder why so many shades of happiness are gone. Perhaps they’ve melded into scars and the only possible way to sense them is through the prelude of thanksgiving?
Whatever the case, while eager enthusiasm is much harder to come by, our desire to look up and receive fresh perspective remains at ease. Take it from the battle-tested: All those sermons about intentionality in referencing God, I’m telling you…they aren’t Sunday morning fluff. At some point, you grow up and realize there is no other way to find those morsels of encouragement. Sometimes, all you can do is pray. And that’s okay.
As for Lys and I, we’re doing what we’ve been doing for so long now – one day at a time, one hour at a time, keeping hearts transparent and lifelines secure. To be honest, I feel a tad guilty – I probably should be more excited about Aili’s arrival on Friday. The last time one of our own came into the world, there was so much chaos and hostility. Forgive me, Lord, I’m just a weak man walking on the sea. I believe in You and yet reserve my joy to seeing the evidence of health without compromise, your breath in her lungs as we pour out our praise. At this point, I don’t contend for normality but vibrancy in abundance. Hence, why Aili is the name we’re going with. In dark depths, when shadows are at their most opaque, there’s a bright, shining light in our midst reminding us He’s there looking out for us.
As for life itself, the internal knots will eventually unwind and streams once abandoned will be returned to. God knows what we’ve had to release in the short term and why. Certainly, where the help has and hasn’t occurred this year has been telling. Like a weather vane turning in slow motion, the signs aren’t lost on me. Glory to God, He speaks through and to voids, even ones unauthorized, to reach us with what only He can provide.
Yet, despite the mysteries and unknowns, what I can say is this: While the heart is weak and willing, as far as it be with us, we will relish the ride. Even as we pass through the turnstile of significant dates, August 21 and September 18, most notably, you can bet the joy set before Him, along with the cost, will be counted. Even though we feel trapped in a parallel universe, far removed from our intended plotline, our trust will remain anchored, our times in His hands.
Jubilee’s goodbye letter as shared during 1:10:00-1:17:23 of today’s Celebration of Life live stream: https://youtu.be/xUD-NkRrzvk
Dear Jubilee,
For almost two weeks, I’ve been trying to find the words. There’s so much I want to say but don’t know how. So, I’ll start with the obvious.
I love you. Not more than you know, but as you now know.
Indeed, in this moment, I write to you within the ultimate paradox. Having fought with you for 13 months along with your mom and two of the world’s best NICU medical teams, I was desperate to see you experience fullness, not just of health but of life, love, and whatever joy you could possibly know within your fragile state. Now, look at you, all smitten and sassy, safe in the Father’s arms aware of that fullness in ways I can’t possibly understand. The world’s greatest former micro preemie fighter…at peace with her Creator. His breath is in your lungs as you pour out your praise.
No question, you challenged and changed many hearts from the ones entrusted to your care to ones who barely knew you. From your primaries to prayer partners across the globe, you reminded us how special each day truly is, and how much the present is a gift you can never take for granted. Packed within a year of forced rest, you compelled us to take baby steps into unchartered belief, to ride the waves far out of our depth.
Yet, through it all, we fell in love with His might and light in your fight. Christ in you, Christ in us, we learned how to be content at the end of our rope. how to fall and press into Jesus at the same time, not to mention the technical terms, the bells, and whistles of a brave, new world.
Often, there was much to take in, much beyond our ability to process. And so, we prayed. Every day. Without ceasing…that the same Spirit behind your smile, that fueled your tenacity would be known across the hall, down the aisle, from the parking lot and front desk to each emergency, operating, and visitation room. Every day. A chance to stiff-arm the ‘why’ and embrace the strive-less rhythms of grace. Every day. An opportunity.to gaze into your eyes to find God looking back at us through them.
In a way, you inspired joy in persevering through chaos and crisis. You taught us how being still in weakness is, in fact, strength. And you reminded us how surrender must also rise with hope, how to embrace those mini-Gethsemane moments throughout each day: Not my will but yours be done.
To your mother and I, your sister and brothers, we marvel at the vessel God designed you to be, the way you took in unity, prayer, and love and churned out life upon life on the other side. Granted, your days were numbered less than what we would have hoped. Still, we know in this grand mystery, there is purpose, hope, and freedom within the appointed number of days God called to your earthly tenure.
And so, I stand here with a new appreciation of the question I must ask. For it is not, ‘Why did God let you die’, but rather ‘Why did God let you live?’
Past day 1 when you had no business surviving traumatic labor at 25 weeks. Past day 80, when both your lungs collapsed. Past days 290-340 during which you coded over 15 times.
Why did God let you live?
While your family and I will have many years to discern the answers, for now, I want you to know it is well in my soul God called you to reflect childlike faith, wonder, and helplessness for 393 precious days and it is well in my heart God anointed you to inspire NICU personnel and families towards the loving arms of Jesus, to help them consider what is it that kept you going, kept fighting, and kept defying the darkest of diagnoses.
As for ending this letter, having embarked on this joyful journey like no other, I ask one more question, one I’ll be sharing with many who know and will know your story. And that is, based on the legacy of your life, ‘How is it we must never be the same again?’ To quote your great grandmother whose husband you now know, “you were a diamond loaned to us from God’s ‘stash’, a pure, bright, beautiful solitaire to show us how beautiful heaven must be.” Of course, with your former limitations and restrictions on earth, a celestial, prismatic perspective may seem farfetched. But to me and your family and friends sitting in this room today, the metaphor hits home. Like a unified tribe, we’re all witnesses to how you reflected eternity through epic resilience. From a micro-preemie plagued by chronic lung disease and pulmonary hypertension to one born again into paradise, we celebrate not only your victory and triumph over sickness and death but relish the truth that for thousands of people, your face is now a thumbnail capturing the kind of Romans 5 endurance they want to run the rest of their life with.
Creds to the Master. Tell Him we’re forever grateful for the Year of Jubilee, for having the chance to love and support you as your immediate and extended family. True, there was a lot of pain amidst the patience and perseverance during your short life. But as C.S. Lewis once said, while God whispers to us in our pleasures and speaks in our consciences, He shouts in our pain. For it is pain that insists on being attended to as His megaphone to rouse a deaf world. So, as we say goodbye in this setting, as a community who loves you, we declare the voice you now have via the Almighty as one that will heal the brokenhearted, proclaim liberty to the captives, and announce favor and grace to those who mourn. The joy of the Lord as your strength, help prepare the way for the risen Lord.
After all, the season’s changing and God is rebuilding everything. So, we will listen with humble hearts, with gladness and gratitude, to the people shouting, ‘This is Jubilee’.
…soaking in security metaphors relative to God’s sovereignty.
No question, this journey is wearing me out. Five days to one month to one year. Like the text on Evy’s new ‘Sleeping Beauty’ t-shirt, ‘I can’t even’…
From driving to work without a modicum of ‘I can’t do this today’ to imaging life a year from now, the writing on the wall is a tattoo on the heart: I can’t because I shouldn’t…but I can because He will just as He always has.
For Lys and I, we’ve been overwhelmed by basic math in recent days wondering why Juby has coded seven times in five weeks not to mention a pair of baggings the past five days alone. We wish we had the answers though we’re learning the freedom of anticipating them in our day-to-day interactions. After all, if our faith is to mature, there must be a catalyst, often a challenging one, compelling our perseverance to discover God in a fresh way.
Perhaps this is why we’re often confused and discouraged but also confident and encouraged at the same time. As for any NICU family leaning into God, not relinquishing their hope, there almost has to be an uncomfortable friction between the emotional and spiritual where in between, perpetual paradoxes are broken down.
For instance, when I hold Juby’s hand, I’m reminded as she clings to my finger, so too must my hope, my trust, my devotion also cling to Jesus. Just like Caeden, Evy, and Milo at her age, she squeezes whatever she can get her hands on and doesn’t let go until I pry it loose. Sometimes, I forget how desperate she must feel, wishing the lines running across her body were gone yet oblivious to the fact this isn’t how a first-year body was meant to function.
Obviously, I know where she’s at and what she’s enduring is short-term within the grand scheme. By God’s strength, she will eventually auto-correct through these setbacks be it six months or six years.
Still, I suppose if there’s a head scratch for me, it comes back to what must I do apart from believing God is who He says He is. As this adventure has taught me, God is glorified in our suffering as we hold fast the confession of our hope without wavering and boast of it firmly until the end (Hebrews 10:23; Hebrews 4:14). However, as I’m also finding, this doesn’t exactly simplify the pathway to touching His robe. In my case, while embracing stillness has been a perk to the load-bearing, I’ve also noted it can keep me idle when God is calling me to motion.
It’s like I’m content to contend…to put one foot in front of the other…but struggle to believe I can get to Jesus in my weakness. And so, on my dark days, I stay where I’m at anchoring in worship and His Word though ashamed I didn’t try harder to make that contact. On brighter days, I sense that slow motion surrender though in the wrestling still wonder, ‘Jesus, can you slow down a little? I know you’re up to something amazing but we just need more of you right now.’
Again, I don’t say this to draw empathy. Rather I say this because I’m desperate…not only to see Juby healed while operating free of fear to whatever intimacy is required…but also to know how the Father responds when any part of us, well, codes! Be it a physical code, a sin/stronghold code, a generational and/or word curse code. Who knows…for most of us, it’s probably a combination of things.
As always, time will eventually stir my pen to capture findings to my curiosities, among them why only one ‘how long’ reference in Psalms actually ties to sorrow.
For now, I bid this post and you, my friends, a fond adieu. This man needs rest and a charge to His best.
Tomorrow, we live to see another day. I will pre-rejoice and be glad in it.
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