My grief has reached adulthood. 18 years old. I don’t know how we got here, but just like child-rearing, the days have been long and the years have been short. 18 years without my boy!
Watching videos of my Jud Bud today, I was struck by how familiar those moments feel while simultaneously experiencing them as incredibly foreign. I can recall my lived emotions in each documented moment, encountering them all over again, but now with the perspective of loss. Yet, my life with Jud also feels concurrently foreign—strange, unknown, distant—so alien to my life now. It’s remote. It’s a life never fully explored. It stunted. It’s not accessible. It’s obscure.
I feel the intimacy of the familiarity of my life with Jud along with the vastness of its foreignness all at once. It wrecks me.
Instead of raising my boy into adulthood, I’ve raised my grief into adulthood.
Yet as I watched his videos, I also kept imagining all of this brokenness fully redeemed, where hindsight will deem it light and momentary, where all that’s been lost is fully restored. I imagine myself bowed before the King of kings as Jud comes running to me. And whether he’s 18 years old, 36 years old, or still just about to turn 3, oh what joy it will be!
My heart had no concept of the depths of parental love until you entered my life 20 years ago. The day of your birth changed me forever. And the day of your death changed me forever once again.
I remember sitting by your gravesite on your third birthday, the first without you, wondering how I was going to survive each day and especially finding it hard to fathom your 20th or 30th birthday. But here we are. Today marks 20 years since you were born. Happy Birthday, my sweet boy!
There is much joy to recall from that special day, but something that stands out to me right now is when I laid you on the bed in front of me, after they had measured, weighed, and cleaned you, and it was my first real chance to look at you, to gaze upon your face…and your eyes were wide open…wide, wide open. It was so uncommon for a newborn. You weren’t crying. It’s as if you were just soaking it all in.
And by God’s grace your wide open eyes translated to a wide open mind, heart, and voice. I was given this uncommon window into your young soul, your beautiful, beautiful soul. And I soaked it all in. I didn’t even know I’d need to soak it in, but my delight as your mother was so great that I could not help but just drink you in, every little part of you. And little did I know I’d have to draw from that well of your short life for the rest of my life.
But I’m still continually drawing from that well, Juddy. My eyes are wide open to you all the time. All. The. Time. You sit in my mind beneath the surface of every breath; I remember our moments together, I imagine what your life might have been were you here, I imagine your life now, and I imagine how your perspective in eternity might inform my current moments. Your life has completely shaped and reshaped how my eyes are open to the world around me.
I often think about how your eyes are wide open now—in the most figuratively complete way. You know the depths of what I do not yet understand. You know how the tapestry of this knotted mess fits together to create a beautiful story of God’s redemption and love. You know what it means for all your suffering and pain to have been light and momentary. You have seen the face of Jesus and know what it’s like to be in his presence and held by him. Your eyes have been fully opened.
And so I imagine our reunion, the next time I see you, and your eyes are wide, wide open with radiant joy. It is the perfect, complete picture of the moment I first gazed upon your face 20 years ago.
We’ve reached sixteen years. Sixteen. Years. Sixteen years of grief over the loss of my Jud Bud. S-I-X-TEEN.
My grief is now old enough to get a driver’s license. It’s aged enough to have gone through puberty. And it’s mature enough to be exercising more independence. My grief is sixteen years old.
But my boy never got to be sixteen. Or 13. Or 10. Or even five. He never got his driver’s license. Never went through puberty. And never got to seek independence.
Interestingly, my grief is actually like a teenager in my life. I know it well. I’ve lived with it for many years; but it can throw me off guard too. It keeps growing and changing, but the general gist of it’s character has been revealed. It grips my heart in every way. But it has a mind of its own—I can’t control it, even though I unwittingly still try. It is, after all, sixteen years old.
Sixteen.
Sixteen is a lot of years to grieve. To miss. To long. To wonder. To ache. To yearn. To have a pain that still shapes most of my thoughts, my breaths, my life, but is unseen by others much of the time. The pain of losing my child is still very much alive at 16 years. And will be at 20 years. And 30 years. And even 40 years, should I survive that long.
But we all know pain. To miss. To long. To wonder. To ache. To yearn. These are experiences of the human condition that impact every heart. We all want something more. Something sure. That which is whole. Real. Pure. Beautiful. Good. Right. True. And free of pain.
Jud has that.
Jud has that and he’s had that for these sixteen years…a life with the One who came near to suffer with us and ultimately for us. The One who is sure. Whole. Real. Pure. Beautiful. Good. Right. True. …and Jud has that for eternity.
Someday, after these sixteen years have multiplied, I will have that too.
It’s hard to believe you’d be turning eighteen today. I’m finding this especially jarring and hard to swallow. Maybe it’s for the same reason any parent might experience…it means letting go of your childhood.
But your childhood already became intangible to me—after 3 years you were frozen as a preschooler. I’ve been left to only imagine all the life you might have lived as a growing boy in our home. So in reality, I’ve already had to let go of your childhood…completely. Yet, even so, there are still these marked layers that are another step in the process of grief.
And this milestone of your 18th birthday feels like a significant step in my journey as a grieving mom…my grief has aged. Instead of watching you age and grow and become, I realize it’s my grief that’s been aging and growing and becoming. It’s as though my grief has become a full-fledged adult now: more mature, confident, learned, and independent. It requires different things of me, but it’s very much a part of me.
And you’re very much a part of me, Juddy. My every breath has been shaped by you. And although I don’t know whether you’re a full-fledged adult in heaven or still the little boy that I let go of 15 years ago, I do know that you’re living a fully-realized, whole life in the glory of our Savior. And the character and substance of who you are—bright, articulate, funny, handsome, sweet, and Spirit-filled—is mature and complete, lacking nothing. And that is worth celebrating!
I miss you so much, Jud Bud! So very much! And I celebrate that blessed Christmas Eve when you came into my life 18 years ago!
It’s raining. Raining so hard that I think we won’t be able to decorate your grave for the first time in 14 years. This makes me sad. And it leaves me a little lost. It’s the simple way we’ve come to celebrate you on your birthday and now it may not be an option.
And that represents the core of my struggle. I don’t really know how to honor you anymore. I’m lost in my grief.
At 17 you’d be a man child. I don’t know how to honor the 17-year old Jud. I don’t know you at 17. And every part of me wishes I could experience you as a young man.
But it feels simultaneously strange to honor you as an almost 3-year old boy too. Too much time has passed for that to feel fitting either. But the almost 3-year old Jud is all I know.
I’m lost. I’m lost in my grief.
But here’s what I do know…it doesn’t matter how much time passes, my love for you does not wane; my love perseveres with depth. But I’m lost in my grief because I don’t know how to meaningfully express my love. Even the smallest gestures that have become part of our rhythms aren’t always feasible, feel insufficient, or don’t seem fitting any longer. My love for you has very few places to land and even those I’ve had are diminishing over time. Today, all I really have is this meager letter to tell you how much you fully have my heart. You’re my boy. You’ll always be my boy. You’re the boy who changed my world forever. I love you so much, Juddy!
And though I’m lost in my grief, I take such solace in knowing you’re not lost. You are found. You are fully found and wholly loved in the arms of our Savior. And your love is completely realized. Even your love for me, your mama, is whole. While I still face the insufficiencies of a broken world…you don’t.
I am so thankful you were born, my sweet Jud Bud. Happy 17th Birthday! It is a privilege be your mom and I love you so much! And I love Jesus, this God who came near and entered our pain, and who holds you now. In him is my hope. Just a few more weary days, my beloved boy…
14 years without you. I miss you so much! You and your sister are my greatest joys and my longing for you never wanes.
The other day I was at a dinner party where someone was asked the question, “If you could return to any year of your life and relive it, what year would you choose?”
Though I wasn’t personally being asked the question, I had an answer that came to mind immediately.
It’s just a small window to which I’d return. It’s not even a full year. There is a sliver of my life that was the highlight, Juddy. I didn’t know it at the time. But I know now that this tiny stint was a climax in my life and a season for which I long.
I’d push rewind to the day Jessie was born, and I’d delightfully relive every moment until you began to stumble. It was my nine months of heaven where I got to live with both my kids in a life unadulterated by Krabbe disease and death.
It’s not that these months were easy, by any means… I was transitioning to being a mom of two kiddos. I was exhausted with all that comes with having an infant and a toddler, your sister and you being just 19 months apart. I was really struggling with breast feeding your sister. We were strapped financially. And I was longing for friends after having just moved to a new area.
But those were my months to which I’d rewind and relive over and over and over again. Just ordinary days. But oh what a delight — having you and your sister together and our family whole! Those memories feel complete.
Once Krabbe Leukodystrophy entered the picture, everything changed. And since losing you, every breath has felt incomplete. Every family dinner, Every vacation. Every holiday. Every family picture. Every momentous occasion. Every. Thing. Incomplete.
I miss you so much, Judson!
Which begs the question of a fast forward button… my answer, again, comes to mind immediately.
This time it’s a massive window to which I’d fast forward. It’s infinite. The bulk of my existence, will, in fact, be the climax.
I’d push the fast forward button to eternity with Jesus — the time when your dad, Jessie, and I will all be reunited with you by our loving and gracious Father. I’ll experience every moment with sheer joy and delight. It will be true heaven, where your dad and I get to live with our Savior and both our kids in a life unadulterated by Krabbe disease and death.
Complete. Whole. Fully Alive.
But there is no rewind button. And there is no fast forward button. There is only this moment…
And I want to live this moment well — not only in light of my past with you, my precious son, but especially in light of my future to come, with God’s precious Son.
Just a few more weary days, my beloved boy. Just a few more weary days.
It was a warm August day in 2007. My mom, Drake and I were gathered around Jud as he laid in bed listening to an audio book. Suddenly, Jessie came toddling toward me and we all erupted in praise for our new walker.
Surprised by our exuberance, Judson asked, “Is Jessie walking?!” There was confusion in his voice but also a sense of pride for his sister.
At the time, Jud was was around 31 months old and approximately 2 months into the onset of Krabbe Leukodystrophy. Fully blind and no longer able to walk on his own, Jud was hearing us cheer on his little sister for some of her first steps.
Something profound happened in that moment. It was as though our Jud Bud became starkly aware of his own increasing deficits while simultaneously celebrating with us the victories of his little sister’s movement.
I think Jud is still celebrating with us the victories of his little sister’s movement.
For all that he lost—becoming fully paralyzed, unable to even hold up his head—Jessie has distinctly gained. Whereas Jud was rapidly deprived of the ability to move his body, Jessie has gained greater and greater ability to move her body; she is enraptured by the joy of movement.
And we are enraptured by the joy of watching her move.
Jessie dances. It’s as though it was implanted in her. From the moment her brother died, she has been inclined toward dance. She dances to express herself. She dances to feel. She dances to heal. She dances for delight. She dances to entertain. She dances to create. She dances for beauty. Jessie dances.
And it’s become apparent that Jessie’s dancing is part of Judson’s legacy.
Nov. 7th is a sacred day for our family; it’s the day our precious boy breathed his last. So when we discovered Jessie had a dance concert scheduled on Nov. 7th, I had a pit in my stomach. It felt almost sacrilegious on such a hallowed day. But then I realized…it was poetically fitting — his legacy in her movement.
Gifts. God has given us many gifts through our pain. Jessie’s movement is one such gift. I experience it as an incredibly redemptive gift — wherefore we horrifically watched our Juddy lose every ability to move, we get to regularly delight in watching Jessie, as a dancer, continue to gain new abilities in movement.
The day after Jud died, all I could see was darkness. But Jessie-Girl was on our bed, oblivious to our loss at 14 months old, and jumping up and down in delight. Though mired in grief and sorrow, I couldn’t help but smile at the gift of watching her move.
MY LITTLE SEED
Enveloped in the dust,
A tiny little seed,
Sown in love.
Physical, earthly origins shaped with purpose.
Plain. Natural. Weak.
Broken and Deficient.
Dishonored by mortality.
Lifelessly Perishable.
Dead.
Buried.
…but Christ.
A secret mystery revealed.
Bursting from the dust,
A great and magnificent tree,
Reaping in love.
Spiritual, heavenly completion shaped by glory.
Exceptional. Supernatural. Powerful.
Perfect and Whole.
Honored by immortality.
Vibrantly Imperishable.
Alive
Resurrected.
The seed must die to find true life.
“Where, O death, is your victory?
Where, O death, is your sting?”
When the Seed Dies art by Christina Levasheff
Inspired by 1 Corinthians 15:42-58 and John 12:24.
Written beside the gravesite of my Jud Bud, 13 years after his passing.
