Category: Featured Posts

Lost In My Grief

Dear Jud…

I feel a little lost today. Lost in my grief.

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…

Love,
Mama

Tags death of a child, loss of a child

Featured Posts Heartache and Hope

Rewind

Dear Jud Bud…

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.

Every ounce of my love,
Mama

Tags death of a child, hope, leukodystrophy, loss of a child, rewind

Featured Posts Heartache and Hope

His Legacy in Her Movement

Post author By Christina Levasheff
Post date November 1, 2021
18 Comments on His Legacy in Her Movement

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.

And that gift still grows.

Tags dancer, Jessie Dances, legacy

Featured Posts Heartache and Hope

My Little Seed

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.

Tags death, death of a child, faith, faith in suffering, hope, loss of a child, seed

Balloon in the Yard

Judson Display Spanogle

On Christmas day we received a photo and a message from a woman in Indianapolis, Indiana who unbeknownst to us had received a balloon in her backyard with information about Judson and Judson’s Legacy. She then proceeded to visit our website and wrote, “Whoever did this made my day. I feel really lucky to have received this balloon and to learn about Judson.”

Balloon for Judson's Legacy — Balloon Found in Indianapolis Backyard

A few days later, we were blown away to discover that a family of Jud’s Buds in Indiana (whom we have never met) had carved out time on Christmas Eve to express their love and commitment to Judson and celebrate his 10^th birthday by each releasing 10 balloons (a total of 40) with information about Jud and his legacy. John, April, Tristian and Jaxon Spanogle shared their creative family project with us, touching us deeply with their support and kindness. We then got to share with them how their efforts had already reached at least one person in Indianapolis and likely more.

It is one thing for our organization and the people who have been personally affected by Krabbe leukodystrophy to passionately take up the cause, but it is especially moving to see such creative, compassionate, and powerful expressions of support and solidarity emerge in the hearts of people who take up the cause on their own accord.

We want to express a special thanks to the Spanogle family; we are pretty certain this is the best and most creative birthday gift Judson has received since he passed away!!

Enjoy this video put together by the family:

Tags Balloon, making a difference

Featured Posts Heartache and Hope

Lasts Forever

Lasts Forever

(A poem for my Juddy this Mother’s Day)

I never thought I’d have the gift
Of being called a mother,
Then one day you came to be
And changed me like no other.

I beamed with delight and cried with joy;
You were cherished from the start.
The moment that our eyes had met,
You swiftly stole my heart.

I imagined all you’d grow to be
And my spirit swelled with pride.
But many years you’d never live,
Upon my chest you died.

As your mama, I grew vulnerable
To a whole new host of pains.
But I wouldn’t change a moment
‘Cause your legacy remains.

Loving you has changed me
Like nothing else will ever;
I miss you with each breath I breathe,
Every moment shared, I treasure.

But I’ll hold you once again someday
And hear your voice say “Mommy,”
All my tears will then be quelled
By a joy-filled, vast tsunami.

My love for you, so rich and deep,
Death could never sever.
You’ll always be my precious child,
Being your mama lasts forever.

Tags loss of a child, Mother's Day

Featured Posts Heartache and Hope

No More Hiding

Where does one find safety and healing in their brokenness, hurt, doubts and struggles? God designed the Church to be that place—a place where our wounds are bound up in love, a place where light floods the darkness, where our haunting shadows are rendered impotent, no longer able to permeate and destroy our lives.

But it has become especially evident to me in recent weeks how much hiding occurs in our Christian communities. We hide our true feelings, we hide our pain, we hide our doubts, and we especially hide our sin. We fear that if our walls come down and the dark areas of our heart are exposed, they will be dismissed, misunderstood, or even worse, we will be completely rejected.

So our wounds become imprisoned; we feel as though we must keep our pain and strife concealed until we have experienced victory. Consequently, the hurting only express their hurt once it is overcome with hope. The grieving only express their grief once they have found joy. The doubting only express their doubts once they experience certainty. The struggling sinner only shares their sin once they are triumphant over it. The problem is that in our hiding, we become more susceptible to defeat. Hope, joy, certainty and triumph are unable to flourish in darkness—true victory can only be found when our brokenness is exposed to the Light.

For the Church to be a place of safety and healing we must become more comfortable seeing the darkness in others…when it is still dark. And we must also have the courage to share our own dark shadows. Only when we live in the light and our raw wounds are exposed, can God’s grace and love truly flood our hearts for healing to begin.

Let’s let the healing begin…

Author: Christina

Featured Posts Heartache and Hope

In the Middle

I’m living in the middle.

Time has gently moved me away
From the intensely jagged edges
Experienced at the beginning.

Time also sweetly moves me toward
The realization of glory
To be experienced at the end.

But I’m living in the middle.
Distant from the outer limits
Yet stretched by the longing of both extremes.
Not at the beginning.
Not at the end.
Just spinning
In the in-between.

Because time has harshly distanced me
From the concentrated love and strength
Experienced at the beginning.

And time unkindly prevents me
From the fulfillment of hope
To be experienced at the end.

I’m living in the middle.
Distant from the outer limits
Yet stretched by the longing of both extremes.
Not at the beginning.
Not at the end.
Just spinning
In the in-between.

I need to know love
In the middle.
I need to feel strength
In the middle
I need to have hope
In the middle…

Not just at the beginning.
Not just at the end.
But as I’m spinning
In the in-between.

Walking through the middle of this journey of loss requires more strength and endurance than I ever imagined. Please, God, come meet me in the middle and intervene in my in-between.

Author: Christina