“Mother's Day is probably one of the most dreaded days for moms who have suffered the loss of a child. Even, if we have the blessing of other children, there is always that empty chair, that lump in our throat and an indescribable ache in our hearts for that one who is no longer here with us.” –Angie Green, Mothers Like Me

Mother’s day looms.

With each mention of the impending day to honor moms, it seems an involuntary, audible sigh, doused in a bit of dread, escapes my lips.  It’s  not that I don’t fully delight in being a mother for my two children and consider it the greatest blessing imaginable, or that I don’t want to be honored for my role as a mom—it’s just that the very gift of motherhood, in all its blessings, is simultaneously the source of my anguish.  It’s that deep, indescribable love as a mom unable to wrap itself around the very subject of my affections.  When I reach for my child, my embrace falls on mere shadows of the boy who holds my heart.

And so I feel the empty space of my son’s absence far more acutely on a day carved out to celebrate our love. 

Author: Christina

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In preparation for a recent short interview about Judson, I went back and was reading various parts of Eyes that See.  As I was revisiting my own feelings from the most intense and heartbreaking period of my life, I was simultaneously feeling the tensions of my heart in the here and now.

It became apparent to me just how much my feelings toward God fluctuate.  There are times I have felt so grounded in his love while other times my understanding of his care and compassion seem to elude me.  There are times I feel totally hurt and disappointed by him, while other times I am overwhelmed by his blessings and grace.

My feelings toward God fluctuate.

But my feelings in all my deepest relationships fluctuate.  My emotions toward Drake regularly change; I can go from deep gratitude, to anger, to frustration, to disappointment , to contentment, so on and so forth.  If I were to base our relationship solely on my unstable feelings, our marriage would never survive.  When the difficult feelings arise, I find it especially necessary to stay grounded in the truth of our relationship.  I remind myself of Drake’s character.  I reflect on how God brought us together and what he has done in and through our relationship.  I must consider his commitment and faithfulness to me.  I must bear in mind our love that has endured so much and the permanence of our marriage.  I need to focus on the constants that do not shift and change like my vacillating emotions.

I have to do the same in my relationship with God.  It is essential for me to stay grounded in the truth of our relationship as revealed in Scripture.  I must remind myself of God’s character.  I need to regularly reflect on all he has done in my life and in the hearts of others.  It is important for me to consider his commitment to his people along with the ways I have experienced his faithfulness in my own life.  I must bear in mind his enduring love and the permanence of hope stemming from his sacrifice for me.  I need to focus on the constants that do not shift and change like my vacillating emotions.

 My feelings toward God fluctuate.  But he does not.  He is unchanging and calls us to remember.  And in our remembering, our floating, drifting emotions, easily moved by the wind, become grounded.

Author: Christina

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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

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Oftentimes life finds us in a long, long season of waiting—waiting for God to move a heart, waiting for a circumstance to shift, waiting for a relationship to develop, so on and so forth.  Our longings can be for very good things, things that are pleasing to the heart of God, and yet they elude us.  Periodically we even have situations that lead us to believe the waiting is about to end, but instead, circumstances don’t pan out, leaving us with more painfully deferred hopes.

Although I am a firm believer that God is working in the waiting, preparing our hearts, shaping our souls, and developing qualities in us that can only come through delaying our desires, it can be very discouraging too.  When the waiting feels endless, we wonder whether we have missed the mark with our yearnings.  Should we give up these hopes altogether? 

Commonly, God does want to change our desires through painful waiting.  Other times, he is simply refining our hopes in the process.  But sometimes... after a long season of waiting, God graciously and abundantly chooses to give us that for which we’ve longed.  And the waiting ends!

Through the lives of a couple friends, I am recently reminded of the joy that can arise out of a long season of waiting—when God generously provides what had been, for a long while, withheld.

I have a friend who has spent much of her adult life asking God to provide a partner with whom she could share a life-long marriage relationship.  Over time she watched her dearest friends meet, marry, and start families.  Meanwhile, she had never even experienced a dating relationship.  Her heart broke in the waiting, wondering, and diminishing hopes.  But then, it happened.  She met an amazing man 10 months ago and now, after years of hoping and praying, they are engaged to be married.  The waiting has sweetly ended.

I have another friend, married for several years, who longed to start a family.  Three years ago, she was thrilled to discover she was pregnant.  Mid-pregnancy she lost the baby.  She got pregnant again.  And lost her second baby.  She got pregnant again.  And lost her third baby.  My friend began to wonder whether she would ever have the gift of holding a child of her own, swaddled in her embrace.  Her heart broke in the waiting, wondering, and diminishing hopes.  But then, it happened.  She got pregnant again and just two weeks ago met her precious baby boy, face-to-face.  The waiting has sweetly ended.

Because of their waiting, the joy has been richer and deeper, not only for them, but for those who have waited with them. 

Ultimately, all our hearts groan in waiting, a longing that is entrenched in a guttural desire for a life where there is no waiting—a life where the fulfillment of all our yearnings are met—a life that can only be found in the presence of God himself.  Until that time, we live in yearning.  God certainly does not always give us the desires of our heart, but I have recently been reminded that sometimes, he does.  And the waiting ends...

It is a glimpse into eternity where we will never wait again!

Author: Christina

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I received an unexpected phone call this morning from the city of Costa Mesa informing us that Judson’s sycamore sapling at Wilson Park had been vandalized.  For awhile we had been concerned about the tree because its growth seemed stunted; it didn’t appear to be developing as it should.  But the city official on the other line spoke of malicious destruction described as someone having karate chopped it several times.  It was so badly beat up that he couldn't even identify its species any longer.  So they cut it down, leaving a very small stump.

I felt punched in the gut.  I tried to tell myself it was just a tree in an effort to downplay all I was feeling. 

But it wasn’t just a tree…

This is the sapling planted in memory of my dearly loved and missed son.  This is the tree that was dedicated with family and friends in 2008 as a symbol of life, to grow healthy and strong and provide a place of rest and comfort for all who would sit in its shade.  This is the tree we decorated on November 7th each year as part of remembering Judson’s home-going.  This is the tree I’ve loved, cared for, and tended to.  And just like Judson, it lived a very short life. 

It felt agonizingly symbolic.

I went to the park today and lamented the death of the tree.   I sat and stared at the little clean-cut stump.  I played with the roly-polys making their home at the base.  And as I cleaned the memorial plaque that no longer marked anything, I felt even more acutely, the reality of death and decay in this world.   The groaning of my soul for heaven became a little more audible.

The city of Costa Mesa will be planting a new sycamore in honor of Judson.  Maybe this new tree can be symbolic of Judson’s new life—vibrant and full!

Author: Christina

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I was in my Starbucks “office” a few months back wearing my Jud Bud shirt when someone who followed our journey recognized me, introduced herself, and introduced me to her friend, Dana, who was pregnant at the time.  What I did not realize in that moment was how much my heart would grow to love the baby girl she was carrying in her womb.

Subsequently, I began to run into Dana regularly at my “office” and in time discovered that her unborn baby had Trisomy 18 with multiple heart defects.  Dana didn’t know whether or not she would have the gift of holding her baby alive, much less bringing her home.

Olivia Jane was born on January 25th at 5 lbs. 1 oz—alive!  And thus began Dana and her husband Jeremy’s journey of caring for a special messenger from God.

Over the last forty-seven days, I have been given the privilege of sharing in a bit of their journey with baby Olivia.  As Dana and I have regularly sat together in the coffee shop these last several weeks, intimately engaging the pain of having a child given a death sentence, patrons of Starbucks peek over her shoulder to soak in the beauty of her tiny baby.  Oohs and Aahs ensue.  Meanwhile, many people express common assumptive statements about Olivia’s life and development , completely unaware how those hopes for her will likely go unrealized, and how it triggers pain in her mom’s heart. 

Yet as Dana and Jeremy’s lives have been torn, all at once completely and unconditionally loving sweet Olivia while also fighting the inclination to protect themselves from the painful cost of doing so (Caring Bridge Journal 3/3/12), Drake and I have observed the beauty pouring forth from their sacrificial and risky love; deepening, stretching, sharpening, softening, and melting their hearts.  Despite the fact that Olivia’s body is rapidly fading from this life, their love for her and the grace emerging because of it will have permanence both now and for eternity.

They are weary, broken, and hurting, trying to live in the moment.  But instead of bitterness and resentment arising out of the impending death of their child, they are modeling gratitude over the gift of life, a sweet precious life indeed.  And in that one conscious choice, God’s redemptive work takes root. 

It is beautiful to observe.

You can follow Olivia’s journey here.

Author: Christina

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“Mama, do you remember the time I dropped all of my CD’s?”  Jessie asked as I was thumbing through the CDs in our car.  “I have a bunch!  The music is really beautiful and I have lots of stories.   I had to pick up SO many CDs.”

“I remember that.  You do have a ton, Sweetie!”  I affirmed.  “Do you know why you have so many CDs, Jess?” I asked, always embracing an opportunity to share with my girl about the many gifts in our life because of her brother.

“No, why?”

“Well, when your brother was sick and had gone blind, many people blessed us with a lot of music and different stories that he could listen to and enjoy even though he couldn’t see.  Pretty, thoughtful, huh?”

“Yeah.  We have a lot!”

“We do.” I confirmed. “And in many ways they are like a gift to you from your brother flowing out of the love we received from so many people.”

Outside of the soft music filling the car, there was silence.

A few minutes later, as if she had an epiphany, Jessie asserted, “I really wish there was a type of balloon where the top could open up.  I would put some of Judson’s favorite CDs in the balloon, close it up, and send them to heaven for him.  Then he could open up the balloon, take the CDs out and listen to them again… Oh! And maybe I’d put a toy in there too.”

“What a lovely idea, Jessie!  I wish there was a way to do that too,” I affirmed as my heart felt both full and empty all at once.

“Judson must have a ton of balloons up in heaven,” she pondered.  “I can’t wait to see all of them when I get to be there with him.”

My mind began to imagine Judson holding a huge bouquet of balloons.  And then I pictured him receiving a special flip-top balloon from Jess, opening it with great excitement and bursting with joy when he discovered the treasures sent from his sister.

Though these thoughts are imaginary, Jessie’s genuine love expressed through balloons is the extent of her relationship with her brother; this is her reality.  She doesn’t get to play with him. She doesn’t get to hug him.  She doesn’t get to go places with him.  She doesn’t get to (have to) share with him.  She doesn’t even get to bicker with him.  The list of her losses is endless.  And although Jessie’s very young experience of Jud’s love was short and limited, she yearns for more.

On one level it triggers tremendous grief for me, watching my ladybug live each day in longing for Jud, but on another level, I cannot help but rejoice at the depth of her love, prevailing over death, and her anticipation of their future relationship as siblings in heaven.

Every fiber in my being longs for it too!

Some of the many crafts Jessie makes for her brother.

Author: Christina

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I was sitting on the couch in my parents’ home Saturday evening, laptop at hand, outlining some ideas while the TV provided background noise to my musings.   Suddenly my attention was awakened to the screen when I heard the words, “Whitney Houston was found dead this afternoon…”

My focus shifted intently to the news of her passing being broadcast through the waves.

It’s not that I am a big Whitney Houston fan (I don’t even know if I can name more than a couple of her hit songs), but I was jarred from my thoughts because life’s great equalizer had just catapulted itself  into the living rooms of people all over the world—death.   

Whitney Houston had a life of iconic proportions; incredible talent, beauty, fame, fortune, and all the drama that came with it.  But in a moment it was all snuffed out.  Gone.  Her daughter is left without a mother and her absence will leave a hole in the hearts of the many who loved her.

But what especially struck me as I listened to broadcasters describe Whitney’s life was the fleeting nature of the values illustrated.  Beauty, fame, talent, fortune (or squandered fortune as the case may be) were the ways commentators ascribed worth to her life…but those things have absolutely no value to her in death.   None.

I don’t know Whitney’s heart or God’s work in her life, but I do know the only hope in death is a life lived out of the grace of God wherein the things he values become our values.  It’s the only legacy that truly crosses the barrier from life to death. 

Like Whitney, none of us know the day or hour when our last breath will escape our body, but in the meantime I pray for the grace to live a life that reaches into eternity.

Author: Christina

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It’s 2012!  And with a new year comes renewed hope and anticipation for the future.

We are especially delighted to have just signed the last major documents that will move Judson’s Legacy from a pending non-profit to official status as a 501(c)3 organization.   We expect we are just one or two months away from fully launching Judson’s Legacy!  This is a sobering and exciting notion!!!

It has been a long journey getting to this milestone, but we are grateful for all God has been doing to prepare our hearts, give us partners in our ministry, and provide necessary resources.

Our mission, through the sharing of Judson’s story, continues to be propelled by a longing to see God move and change hearts as we witness to his compassion, comfort, and hope through our own suffering and loss.  Meanwhile, we will now be making more of a concentrated effort to raise awareness of Krabbe and fund research for leukodystrophy diseases.

Judson has already been having a significant impact on the research community.  Dr. Patti Duffner, one of the premiere researchers of Krabbe, regularly shares Jud’s story in her presentations about the disease.  In an email to me she indicated, “I use Jud's video all the time and it has such incredible impact!  I call the later onset form of Krabbe...Judson's disease.  I wouldn’t be surprised if one day it is known as such.”  We are honored by her words and even more convinced of our calling to allow Jud’s life to shape future research.

In a nutshell, Judson’s Legacy exists to change lives for the Kingdom while supporting efforts to give Krabbe Kids a chance at life on earth.

If you would like to help us make a difference, you can join our mailing list for updates and announcements.  Simply click “Connect With Us” then “Subscribe” and fill in your name and email address.

And as an organization run completely by volunteers, we are pleased to have every donated dollar directly benefit the mission of the organization.  You can make a tax-exempt donation through Paypal by clicking the link below:

Thank you for allowing Judson’s story to touch your life and helping us touch the lives of others!

More to come…

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As much as this time of the year is filled with festivity and fun, the Christmas season can be a very difficult time for so many.  Even with the hope of the Savior, wishes of merriment and happiness can almost feel like salt poured into an open, raw wound; sometimes a heart is so completely broken that jolliness, even at Christmastime, is elusive.

When someone sent me a quick message during the season last year, instead of ending with a Merry Christmas, she signed off with Tidings of Comfort and Joy.

I marveled.  It was a perfect expression.

As she quoted the age old carol God Rest Ye Merry Gentleman, her words carried such appropriateness for all hearts during the season, even those who are hurting,   She had captured in that simple phrase all the blessings of the season with great sensitivity to possible pain.

This is the first Christmas since losing Judson that my heart has truly been able to embrace the merriness of the season, but seeing as our Jud Bud was born on Christmas Eve it will always carry loss and pain.  To be blessed with tidings of comfort and joy is a great gift.

So from Judson’s Legacy and the Levasheff family, we wish you...

Tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy

Author: Christina

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All the pleasures this life affords, especially in our wealthy, well-developed societies, can erroneously attach us to this world.  But pain is the great disconnector.  Suffering leaves us longing for more.  It reminds us that all is not as it should be.  It highlights the gaps in our lives, destined to remain unfulfilled here on earth.

God didn’t intend for us to be attached to this world.  We are foreigners passing through this land on our way home.  Yet, with all the amusement, indulgences, entertainment, and comforts that beckon for our attention and affection, it is easy to lose sight of the Kingdom and get all wrapped up in the here and now.

But pain sets our eyes on the hope of heaven.  Pain leaves us desperate for a place where there is no more death, mourning, crying or agony, where every tear is wiped away.  Pain refocuses our hearts on the eternal.

I am anxious for heaven.

I want to run on greener pastures
I want to dance on higher hills
I want to drink from sweeter waters
In the misty morning chill
My soul is getting restless
For the place where I belong
I can't wait to join the angels and sing my heaven song. 
(Phil Wickham: Heaven Song) 

I trust in God’s purpose for my life here on earth, but with each twinge of pain, I get more and more eager for heaven!

Author: Christina

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Over a year ago, I read this Postcard:

A natural response to reading this secret may be shock and disgust.  How could someone who has endured the heartache of losing a child possibly wish any such devastation on another? 

But if I look beyond the horror of this secret.  I see deep, deep pain.  I see a person so isolated by the anquish of their loss that they’re desperate for understanding—an understanding that might only come by experience.  I see someone who feels pain upon pain due to insensitivity.  I see someone who has felt unable to meet the unrealistic societal expectations for grief.  I see someone who has lost friendships and no longer fits in the same ways they used to.  I see someone whose whole life has been turned upside-down while feeling alone in the heartache.

I don’t think there is any part of this writer who actually wishes for someone to lose a child; I think this secret simply reflects a longing for understanding, for the space to feel the depths of heartache without judgment. 

I am, of course, reading between the lines, but I am intimately familiar with the feelings that stem from isolation, insensitivity, unrealistic expectations, and even judgment that can emerge out of the loss of a child.  There are times I have thought to myself, I just wish they understood!  It’s not that I would ever, ever want another soul to experience this heartache.  But it is hard to weather some of the social pains and pressures on top of an already broken heart.

But in reality, aren't we all desperate for people to understand us in our pain?  None of us want to feel alone, or judged when we hurt.  The validation that can arise when someone gets a glimpse of our heartache and "gets it" can bring sweet healing.

So this postcard reminds me to be an expression of grace and validation for all the brokenness around me, whether or not I have walked the same path!

Author: Christina

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It is such a gift when new memories of Judson, memories I haven’t recalled since losing my son, unexpectedly surface.

While Jessie and I were walking home from school the other day, she noted that one of the sprinkler heads in the grass along our path was sticking up out of the ground.

Suddenly, a sweet new memory arose out of the cobwebs of my mind…

When Judson was just learning to walk, we would frequently meander around our complex, exploring the area.   The sprinkler system was on a timer that regularly watered the landscape, and after each period of saturation the sprinkler heads, rather than retreating back into the ground, would stick straight up out of the lawn, beckoning to my little boy.

With great enthusiasm, Juddy would lift his little foot over each spray nozzle and with all the strength he could muster, stomp with glee as the sprayer fell victim to his power, collapsing into the ground.  Giggles of victory would follow as he energetically made his way to the next sprinkler.

A precious memory.

Precious, precious memories such as this are such treasured gifts on this journey.

Author: Christina

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We all love a good story.  We are especially drawn to stories of triumph because they can be particularly moving, inspiring, and full of hope.  A good, triumphant conclusion leaves us satisfied, while those without can be unfulfilling.   

As I had the opportunity to listen to various people share a bit of their story in a large-group setting this weekend, I was touched to tears as I heard one triumphant story after another.  I was moved, inspired, and filled with hope.  Each one shared out of a heart that had struggled, but had experienced, or was experiencing, triumph over the circumstances.

But as I searched my heart, I also realized that some of my tears were tears of mourning.  I was mourning my own story.

When Judson was sick, we were begging God to miraculously heal our son.  We were envisioning the triumphant story that would flow from his restoration here on earth.  We were pleading with God for a story that would move and inspire faith, a story full of hope.  It would have been a story where I could have stood up in that room this weekend, holding and hugging my son as a reflection of God’s power and victory in this world.

But that isn’t my story.  My story is not one of triumph.  Instead, God chose for us a story of loss.  He gave us a story where if I were stand up and share, all I have to hold before people is my broken heart.  My story is not one that causes people to spontaneously erupt in applause and celebrate—it is not inviting or appealing.  On the contrary, it is a story that triggers tears and sadness.  It’s a story that can even make people turn their face away, leave the room, or want to run the other direction.

Yet God is in both kinds of stories.

God is present in pain.  Period.  God is moving, inspiring, and full of hope in the pain, not simply after being set free from it.  The hope of our story lies in the suffering, not a triumphal emergence from it.

Of course we have other personal stories of triumph , which are such a tremendous gift, but God’s shaping story for our lives is simply about clinging to him as we navigate lifelong loss.  It’s not glamorous and doesn’t hold a lot of allure, but it’s also not a story in isolation.  There are so many stories of perseverance in pain when the triumph we all long for is elusive.  But God is at work and worthy of praise.

Now I would be remiss not to mention that there will absolutely be triumph to our story—the most triumphant climax imaginable—but it won’t occur in this lifetime.  Our triumph requires a life of patient endurance.  And part of my grief is to mourn the loss of earthly triumph.  But part of my healing is to recognize the hope of God’s sustaining grace, no matter how the story ends.

Author: Christina

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During the summer of 2010, Drake and I found ourselves as finalists to be contestants on the primetime gameshow Minute to Win It.  We had randomly been invited to an audition and became enthusiastic about the possibilities as we progressed through their full contestant vetting process over the following weeks.  And ultimately, we were invited to MTWI Boot Camp.

What many viewers may not realize when watching the show is that every contestant goes through an extensive, four-day, intense “boot camp” to learn all the possible games they might face as contestants on the show.  We spent 10-12 hour days learning over 86 potential MTWI games; we were trained on each game, given the opportunity to practice, and then tested on our ability to complete the challenge.  Furthermore, we met with story producers who were developing the background story for each contestant—which for Drake and me meant they were planning to share Judson’s story with the world.

To say we were invested at this stage would probably be an understatement.   I was not only grateful for the potential to provide for our family, but I was thrilled that God might be using a gameshow as a platform to raise awareness of Krabbe disease and share the life of our boy.  Though there was risk involved in dealing with the fickle entertainment industry (which I cryptically blogged about at the time), my heart was in it!

So after committing the time and energy to boot camp, we were asked to practice at home until we received a call in the following 2 weeks to appear on the show.

Our call never came.

I admit to being incredibly disappointed (Drake weathers these things much better than me).  Not simply because we weren’t given the opportunity after investing so much, but because I actually thought God was at work in the whole situation.  I thought he was leading us into this opportunity and I could not understand why it never materialized into anything.  I was confused, hurt, and even a bit disillusioned.

But one unexpected thing that happened through boot camp was that we got to know many of the other contestants, seeing as we spent four long days with them.  There was one brother/sister team, Aaron and Andi, with whom we especially connected.  Andi, in particular, took great interest in our story.  As a provider of electronic communication devices for patients affected by disability, she clearly had a heart for those who suffer and wanted to know more about Judson.

Aaron and Andi received the final call to be contestants on Minute to Win It and won $50,000!  Their episode just aired this summer.

After boot camp I had become friends with Andi on Facebook and we’ve touched base a little here and there since.  But yesterday, I received a beautiful card in the mail from Andi…along with a check.  It was a check for Judson’s Legacy.  When I opened the folded check to read the amount, my jaw literally dropped to the floor and a loud gasp escaped my lips.

I began to cry.  In fact, I wept as I tried to take it all in.

Not only had Andi just sent us an incredibly sizable donation that will serve as the seed money we have so desperately needed to fully launch Judson’s Legacy, but she also served as conduit of God’s love and a reminder of his faithfulness.

I had struggled so much after the Minute to Win It experience, trying to understand what God was doing, but Andi’s card suddenly made it all crystal clear.  It provided a HUGE peek into how God’s ways can be SO different than our ways, but he is ALWAYS at work, even if we don’t see the fruit of what he is doing for quite some time.

In fact, in many ways, this is the ultimate truth of our entire experience with Juddy along with our efforts with Judson’s Legacy.  God’s ways have been completely different than anything we would have ever chosen for our son, but we continue to trust that he is at work even if we often can’t see what he is doing.

Thank you, God, for your provision and may we be faithful to the call you have for our lives!

Author: Christina

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It is not uncommon for me to be asked how I have maintained faith in God after watching my son suffer and die.  I usualy respond in two ways...  First, I believe God has preserved my faith and it is only by his grace that I continue to trust.  Second, I have taken liberty to lament before God--to be completely honest about my hurt, my questions, my confusion, my disappointment, my complaints, and my anger over the path he has chosen for my life.  And interestingly, I have found it to be a springboard for real relationship with him.

I had the opportunity to teach from Psalm 13 this week and the model of lament offered through the heart of David where it is evident that "if we want to learn to never let go of God, we must learn to speak the language of lament” (Michael Card).  

32 Minutes

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Monday was a sacred day.  It wasn’t a holiday.  It wasn’t a birthday.  It wasn’t a day of festivity.  In fact, for most people it probably wasn’t a day of much consequence at all.  But for us, for our family, for those who knew and cared for our dear son, November 7^th is sacred.

Drake didn’t go to work.  Jessie didn’t go to school.  Family and loved ones gathered. 

Monday was a day to remember.

With reverence, each year we take the time to reflect on the dark but hallowed last days, hours, and minutes of Judson’s life.  Naturally we are reminded of the sacrosanct moment when the cloak of death enwrapped the precious body of our boy, while our hearts were forever torn in two.  The pain of those moments persists.

But where death sought to destroy Judson, and us, life prevails.

We remember how on an ordinary day, in a non-descript room on Wilson St., heaven and earth collided.  We were witnesses as eternity came near, near enough to expose the frailty and fragility of life, along with our powerlessness as mortal beings…but also near enough to illuminate the glory of a faithful little life...restored and whole.  We remember our beloved Judson and we remember with hope.

Furthermore, as we remember, we are reminded of all that has transpired since Judson’s death; it devastated but did not desolate us.   Our faith, trust, and even joy have been graciously preserved.  We live with new understanding, new motivation, and new purpose.  

It is important to remember.

Because although it is painful to recall those dim hours in our life, the sacredness of November 7^th softens the veil between now and eternity; it brings perspective to all of life—the past, the present, and the future.

We miss you so much, Judson!

Author:Christina

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“This is my life.”

I’ve found this phrase floating through my mind a great deal recently.  With every twinge of pain I’ve been hearing the words, This is my life.

Sadly, it is not a statement of enthusiasm.  But the words are good for me nonetheless.

Seeing as Judson died four years ago this Monday some may find this unhealthy or strange, but I think I am just now beginning to truly accept the sobering reality that this is my life, to begin to embrace it rather than object to it.

I have spent much of the last four years as an observer, seeing and feeling all the holes in my heart that have resulted from losing my Jud Bud; this is a natural part of grief.  But rather than simply remembering what my life was like before the upheaval of my world, I have continued in longing, longing for something other than what is now my reality.  My thoughts have been filled with an insatiable yearning for what was or what could have been, rather than an acceptance of what is. I have wanted to go back to that life, my previous life.  But my pining, however natural it may be, at some point must start to fade.

This is my life.  This is my life now.

This is the path I have been given.  This is the road I am on.  I don’t have the ability to alter the defining moments of my past.  I don’t have the power to bring back my son.  I don’t have the option to change all the personal and relational ramifications of my loss. 

This is my life.

And I need to not only recognize this life as my own, but say yes to it when my heart has been crying no for so long.  This does not mean that I cannot continue to grieve my boy, but as I accept this life, including all the pain, I trust I can grow in my ability to live well.  I might become more open to discover the unique gifts I have been given through this journey.   My eyes might see with more clarity from the perspective provided me.  I might even grow in my trust of God’s goodness for my life, this life.

Moreover, maybe one day I just might grow to actually love this life, my life, once again, to the point where the statement, This is my life, could, in fact, be met with great enthusiasm even when it is entangled with great pain.

This is my life.  I am slowly, very slowly, learning to embrace it.

Author: Christina

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A friend recently sent me a note about her neighbor who is dying of cancer and has been given only a few months to live.  And understandably, my friend was feeling ill-equipped, struggling to know how to best support her.

I expressed to her how I still feel feeble in my ability to walk through difficulties with people.

To journey with someone into heartache is to become deeply aware of my own powerlessness, of my inability to change circumstances when every ounce of my being wishes I could alter the situation.  I feel desperate to remove the pain, but I cannot.

Really engaging the heartache of another requires us to be reminded of our own helplessness, the messiness of life, and the reality that we are not in control.  It is a sacrifice.  But it is a sacrifice that can also open our hearts to see and receive the grace of God anew.  As we love, not necessarily by doing or saying the right things, but by actually caring enough to deeply feel the pain of another, our hearts can soften, becoming more pliable for God to move in our own lives.

Isn’t it amazing that by loving someone in their heartache we might find ourselves at the center of what God is doing, not only in them, but in us?

Author: Christina

It is amazing to me how many times I have been commissioned to speak on a specific passage of Scripture and find the verses cutting right to the core of my struggles.  Our Wednesday morning women's study at our church is currently probing the book of Psalms and last week I was slotted to teach Psalm 23:1-3.  But it happened to be a week of great strain for me, and I was left questioning those times when we wonder, God, where are the green pastures?  Where are the quiet waters?  Why do I feel like I am in need? 

Furthermore, the night before I was about to teach I found myself in a heap of tears over some unanticipated circumstances.  And of course, that brokenness spilled over into the morning: I showed up at church with swollen, red eyes and streaks of tears across my face, ironically about to teach on one of the most beloved and hope-filled passages in Scripture.

Though unsure how I would make it through the morning, God graciously spoke to my heart and his truth penetrated my questions.  I pray it may bring others hope too.

You can listen here:

25 minutes: The end gets cut off...

I concluded with this video:

...We know that David’s soul drifted into the lonely wilderness and the tumultuous jungle, that he found himself in the thickets of painful life, but we also know that in his faithfulness and trust, God lead him into the green pastures and beside the quiet waters.  Therein lies our hope.

When we first started down the path of incorporating Judson’s Legacy as a 501 (c)(3) non-profit organization, which was well over a year ago, I was enthusiastic about the potential but also hesitant and reserved about the idea, moving forward with reluctance; I felt out of my element, with very limited knowledge or expertise. This created a great deal of uncertainty for me.  Yet, we had multiple ways God seemed to be calling us to move forward in faithfulness—through people, through circumstances, and through unexpected resources.  And many of my concerns were slowly alleviated as we navigated through the process.

But what I did not anticipate was the tearing in my heart that would ensue.  This path has been far more emotionally difficult than I ever imagined and there have been multiple times I have just wanted to give up and lick my wounds.

My friend and member of the Judson’s Legacy Board, Cristina, so aptly described the process as trying to cut a straight line through a braid.  Our lives and hearts are so intricately intertwined with Judson’s Legacy, vulnerably braided together, but the legal ramifications of establishing a non-profit are causing us to cut a defined line between what is personal and what will be “assets” of the organization. And the process has been agonizing for me, where at times I’ve felt like I’m holding severed pieces of the braid, wondering how God can possibly use what has been cut.

When I first met with a non-profit consultant a year ago, he told me to expect a lot of bumps and bruises as we moved forward but to keep pushing through the pain because there will be great things to come.   Likewise, a couple months ago, I was on Twitter and saw a quote that basically stated, anything worth doing will be difficult and require sacrifice.  These are the words that keep ringing in my ears as I have excruciatingly felt the line being cut through the braid.

That said, we are now at the point where the cutting has been done on paper and now it must be done in practice.  So changes are coming…

Within the next week, my personal blog, “No Artificial Colors or Flavors” (including "Joys of Jessie") will be moving locations and no longer available on Judson’s website.  The URL for my blog will be redirected to the new site.  But I will also continue writing for Judson’s Legacy on a new blog entitled “Hope in Suffering.” 

 “Hope in Suffering” will contain many of my previous blogs and future posts will focus on my journey of grief, loss, and sorrow, my reflections as Judson’s mom, updates for the organization, and pertinent resources that will include guest posts. However, it will not include any writing where I feel the need to personally maintain copyright, or blogs that are unrelated to our journey of hope in suffering; those things will all be found on “No Artificial Colors or Flavors.”  Each time I write, I will need to make a determination as to whether the blog becomes an “asset” of the organization or whether to keep it as my own.  Hence, the line between the two blogs will be a little gray, so I hope you’ll plan to follow on both sites.

Let me just add, we welcome your prayers for Judson's Legacy, that all things be done out of hearts longing to serve and trust God as we faithfully share Judson's story.  Thank you for your support!

It was the dead of night and I was jarred awake by sudden screams from my Jessie-Girl.  I jumped out of bed, startled and concerned, and ran to my lady’s bedside.

“I love Juddy so much!” she cried, “But I don’t want to die.  I don’t want to die!   I want to live forever.”

The substance of her dream hit me like a punch in the gut.

I stroked her back without saying a word.

Her inconsolable cries continued as she writhed in bed, “I want to live a really long time.  I don’t want to die.  I don’t like death.”

“Oh Jessie…” I didn’t know what to say as I kissed her face over and over while trying to hold her.

My mind was racing.  These concerns are much too heavy for such a little heart, I thought to myself.  I don’t want her worrying about death at this age.  This burden is too great for her developing soul.

I felt powerless.  I felt so powerless as worries of death poured out of my little girl.  How do I relieve this load of fear that had clearly been growing alongside Jessie’s growing awareness over the loss of her brother? 

I also felt responsible.  I felt somehow responsible that the way we have handled Judson’s death has in some way triggered these fears.  Have we been too open with Jessie?  Should we have approached our loss differently?

But as my mind flooded with questions and concerns, I began to consider how natural these feelings are for all parents, no matter the substance of one’s journey.  We feel powerless when our children hurt.  We fear responsibility when we see their struggles connect back to our parenting.

But there is grace.  I felt like God was saying, You have done the best you can with what you have been given, Christina, and that is all I ask of you.  Grace.

I desperately need God’s grace as I endeavor to care for this precious little child entrusted to my care…and the greatest thing she needs is God’s grace too.

I began to whisper, “Even though we may walk through the valley of the shadow of death, we don’t need to fear any evil, Jessie.  For God is with us.  His rod and staff, they will comfort us (Psalm 23)… And all the days ordained for us were written in God’s book before one of them came to be (Psalm 139).  He has a plan for each of us, Jessie.” I took a deep sigh wanting the truth of my words to settle in my own heart.

I gave my ladybug more kisses and softly reminded her, “You are precious to me, Jessie-Girl, and you are precious to God.”

And it was as though God was simultaneously reminding me, You are precious to me, Christina.  And my grace is sufficient for you (2 Corinthians 12).

Both Jessie’s heart and mine began to calm.

Jen gave me permission to share her letter here, despite knowing that most of my readers may have differing viewpoints.  I hope Jen touches your heart too...

Dear Judson,

It has been almost five years since I first saw this street sign and thought of you, the little blonde-haired son of my friend. It’s such an unusual name – how random to find a street sign with the same name! I smiled when I saw it because I immediately thought of you, your brown eyes open wide with excitement about life, your sweet smile seemingly a permanent fixture on your sweet 2 year old face.

The first time I saw this street sign you were my friend’s little boy: sweet, gentle, smiling Judson. You were excited about your newborn sister Jessie and full of joy. You were remarkable in your kindness and intelligence for such a young boy.

The second time I drove by this sign it made me sad. It made my stomach turn. You were no longer just sweet little Jud, you were sick. Very sick. I felt acid in my throat thinking about the sickness that was raging in your tiny body. Your body was being seized by illness, darkness and paralysis.

I thought of you all weekend after I drove by that street sign. Others who knew you were praying. Praying nonstop that you would heal, mend, be well. There were fasting, prayer circles and so many other ways to call out to God to heal your body.

I don’t pray, Judson. I thought of you often, all the time in fact. I wished you would heal, I hoped for your body to recover. But I never prayed. Until that year.

You see, I drive by that sign each September on my way up the San Bernardino Mountains to a yoga retreat. The year you were sick, I stepped out of my comfort zone. I participated in a Reiki healing circle. I meditated. Our circle of people at the retreat all focused our energy into one healing force. I imagined beautiful, healing energies -- a ball of fantastic and amazing light -- surging forth, through the ground, through the place where my feet touched the Earth, racing through rock, stone, granite, sediment, to you. Racing like a pulse of magical healing power, erupting under the foundation of your home, racing up the stairs to your bedroom floor, coursing through your bed and your skin, into your tiny veins, pumped to your generous heart where it would pump the healing energy to your brain, to the lining of your skull that had deteriorated from the vile, unwelcome disease. I imagined the energy replenishing your cells, your body restoring itself to full health and vitality – miraculous! Healthy! Whole again! WELL!

I am not a deeply spiritual person Judson. But I tried. I tried to focus and ‘help’ you in the only way I could, when science and medicine and even other prayers had failed you.

Love and hope seemed to be the only things that were keeping you alive. I poured as much love and hope into my meditation as I could muster, hoping I would come home at the end of my retreat to happy, miraculous news.

But I didn’t. All the hope and love and prayer and meditation in the Universe (and there was a LOT of your behalf, young man!) could not fight the battle in your body.

You died two months later.

I miss you and I think of you often. I think of you when I look at my own blonde-haired little child. I think of how much you would love spending time on the playground with Sophie and how I wish I could have watched you grow. I think of you all the time, Jud. But especially in September when I pass your name on that street sign.

Because even though my meditation, my hope, my ‘prayer’ if you will, didn’t come to fruition, for those brief hours you lived in my mind, fully healed, walking again, joyous again, singing again, smiling again, whole again.

And you will always live on in my mind and in my heart – joyous, happy, smiling and whole.

Blonde, sweet, gentle, charming, Judson.

When Judson died, a couple different people blessed me with beautiful necklaces that have a photo of Jud, or a picture of Jud and Jess together.  Over time, one particular necklace became a part of me; I realized that I felt naked without it.  So unless absolutely necessary, I never remove it.

Jessie has grown up seeing me with this necklace around my neck.  I remember the day we were sitting in Starbucks and she asked me if she could have her own Judson necklace.  My heart melted, partly because of her desire to exhibit her love for her brother, but also because I knew she wanted to be like mommy.

I realized I had the perfect necklace for Jess.  It was one given to me that displayed a small color portrait of her brother, a photo that happened to be captured from a picture of Jud and Jess together.  Judson was grinning from ear-to-ear because he was patting his sister’s back and lovin’ on her.

Periodically Jessie asks to wear the necklace.  This last week, Jessie had been wearing it every day.  With school approaching, I became a little cautious about her wearing it on the first day, unsure of the dynamic it might create with her peers and teachers if they ask who it is.  So I inquired, “Are you thinking that you want to wear your Judson necklace on your first day of school, Jess?”

“Yes, mommy.  I love this necklace.”

“Okay,” I responded, a little reserved.

The night before her first day of kindergarten, as we were about to put Jess to bed, I looked down and noticed that the pendant was missing from her necklace.  Before saying anything, I moved the chain around with my fingers, hoping I was wrong.  My heart sank.

“Jessie,” I hesitated, “I think your Judson pendant is missing.”

My little lady erupted in tears.  “No, no, no,” she cried.  “I need it, mommy! I need my Judson necklace.  I miss him SO much and I need to wear it to school!  We’ve got to find it.”  She was inconsolable and my heart was gripped.  “I need it.  I need it.”

And I knew she meant it.  She needed it.

We scoured the house, but could not find the pendant.

I went upstairs to my jewelry box, looking for another Judson necklace.  I had one.  It was a black and white photo of Jud and Jessie together.  “Jessie, I have another Jud necklace.  In fact, it might be even better for you because it is the two of you together.  It is perfect.”

She was reluctant, at first, but completely satisfied once it was around her neck.  “Mommy, how old would Judson be?”

“He would be 6 ½, Jess.”

“What grade would he be?”

“He would be starting first grade.  You would be just one year apart in school,” I replied.

“I miss him so much.  I wish he was going to school with me.”

“Me too, Jessie Girl.  Me too,” realizing Jessie didn’t just need her necklace, she needed her brother.

There is a family of five that lives a stone’s throw away from us, a family we have never met, that had their world turned upside-down in a moment last week.

I came home on Wednesday to a couple police cars in our area.  I didn’t think much of it at the time, but I later discovered that a neighbor, the resident of a nearby home had been killed while riding his bicycle that day; he had been hit by a car.   

He was a husband.  He was a dad to three young children.  He was a brother, a colleague, a friend.

All I could think about was the hole—the hole left by this sudden and immediate loss.  A huge hole.  A huge hole for the people who loved this man.

Today, as Jessie and I were walking by their home, it was full.  It was full of people dressed in black, the people feeling the hole left by this man.  Many people who will feel that hole for the rest of their lives.

I didn’t know this man.  I don’t feel that same hole.  But I feel my own hole.  I feel my own hole every single day and my heart is deeply grieved to know that I have neighbors that now have a massive hole too.

And my heart aches to know there is nothing that can be done to make it better, to ease their heartache.  There are no buffers, there are no easy answers, the intense agony of a gaping hole is unavoidable…

But I also know the gift of having others care about you and your loss, even those who don’t know you.  I know the gift of being loved and how God can work through that love.

They may never see my tears, they may never know my prayers on their behalf, and it may even be awhile before we actually meet, but I care about this family and their loss.  I care so much!

And it makes me so incredibly thankful to all who care about me.  Thank you for being mindful of me and for giving me the space to still feel my hole.

We had the privilege of spending last week in upstate New York at the Krabbe Family Symposium sponsored by the Hunter’s Hope Foundation.  It is quite a blessing to be able to share life for several days with people who have walked a similar journey, people who know the searing pain of watching their son or daughter suffer, and many who have endured the loss of their beloved child.

We are moms and dads from all walks of life, with diverse backgrounds, who see the world from many different perspectives, but there is one beautiful thought that was so undeniably evident in the heart of each parent—that despite the intense heartache connected to loving a child with Krabbe disease, these children are the most amazing gift!

Each of these kids gives us a poignant, exquisite picture into the beauty of life and the gift of breath…

They stretch and grow the depths of our love.  They remind us what is truly important.  They feed our passions.  They reveal a grace that can only be found in weakness.  They render us powerless in a manner that builds our strength.  The souls of these children reach deep into the core of who we are and transform us.

In a world that might look into the face of one of these children with pity, we know without a doubt they are to be admired above all others.  Their frailty and brokenness, in fact, deems them worthy of greater honor, an honor that penetrates eternity wherein the blessedness of their souls will ultimately be revealed through the light of God’s Kingdom.

Tears flowed down my cheeks this week as I held the fragile frame of Trevor Aldrian, stroking his hair, brushing my hand against his soft skin, gazing into his penetrating eyes, and listening to his deep sighs.  It is as though the veil between heaven and earth was paper thin with each kiss of his forehead; I was holding an angel again—not a celestial being—but a special messenger of God.

What a gift we leukodystrophy parents have been given.  What an amazing gift!

Before leaving our former home, I was sitting at our kitchen table and happened to look out at Judson’s tree in the adjacent park and noticed someone standing nearby it, leash in hand, with a cute little dog beside him.  The park was otherwise vacant. 

I would often see people near Jud’s sapling, but this time was different; what caught my attention was the manner in which this middle-aged man was emphatically waving his arms through the air as if carrying on an intense conversation with someone.  But there was no one nearby -- only his dog and our little Juddy’s tree.

I watched with curiosity as this went on for about a minute.  Is he talking to his dog, I wondered?  But he was facing Jud’s sycamore and his dog was behind him.  Who is he talking to? 

He then turned and walked away into a house across the street from the park.  I was about to go back to my business when a few seconds later, he re-emerged from the house.  This time his dog was not with him.  He walked straight over to our little man’s tree and continued what seemed to be a very passionate dialogue…with the baby sycamore dedicated to our son.

It was incredibly odd and a bit jarring for me.

I'm sure there is a possibility this person may have had a mental illness, but wheter or not that was the case, it was striking to me that Jud’s tree somehow held influence with him, a stranger.  There was clearly something about the sycamore memorial that had significantly captured his attention and energy.

While watching this man, I became convinced that something unseen to me was profoundly affecting this guy--it left me with lot's of questions.

____
What do you make of this story?

I’m in a hospital waiting room.

Waiting.

I'm waiting for the arrival of a baby.  Waiting for new life to enter this world.  Waiting for a miracle.

I marvel at the fact that in just hours a new little person—a person with her own unmatched personality, her own distinct characteristics, her own precious features—will enter this world.  She will suddenly take her first breath, followed by another, then another…and so her life, apart from her mama’s womb, will begin.

Her parents will gaze upon the face of their only child for the first time and their hearts will fill with a love that they never knew existed until that moment…a love that will stretch them in ways they never imagined but inexplicably move them in ways they never thought possible.

All the anticipation.  All the excitement.  All the fear.  All the unknown.  So many emotions suddenly culminate and commence in that one first breath, that first breath of life.

Having my world rocked by death leaves me all the more in awe of life.

An absolute miracle.

Categories: general life

Dear Judson,

It’s your half-birthday.  It’s hard to believe you’ve been a part of our lives for six and a half years now and yet most of that time we’ve been worlds apart.  I often feel like I don’t even know you anymore, and the thought tears me up inside.  Yet, despite the obscurity that has arisen from the distance between us, my love does not wane, it does not diminish…it only grows.  You’re my son!  Just as it is with any parent, my love is not dependent on who you are or what you become…my love is ever-present simply because you are my boy—you are a part of me!

And I am constantly missing part of me.  I miss you like crazy, Jud Bud.  But your absence doesn’t keep us from celebrating you, from celebrating your beautiful life.

It was such a special gift to discover that the movie Cars 2 was being released on your half-birthday—it felt like a little whisper of love from God.  We gathered with family for dinner, had cake and cupcakes in your honor, sang “Happy Birthday” to you, had your sister and cousins blow out the candles, and then watched the film together.  Meanwhile, during the entire movie, I held a new Matchbox car in my hand in your honor, playing with the wheels, as I imagined you might have done, were you to be sitting there next to me.

Oh how I long for you to be sitting next to me.  Sometimes I can practically feel your presence as I imagine you beside me.  Other times it is as though your face is veiled, your voice is muffled, and I cannot feel you.

I want to feel you, Juddy.  I want to feel you again with my fingertips and run my hands through your hair.  I want to see your eyes look directly into mine with your smile that is like no other.  I know these longings will go unsatisfied for the rest of my life…

But not forever.

 I’m banking on forever.  I’ve put all my cards and all my stock into forever.  If I don’t have forever, then I have nothing.  Forever gives me hope.

And hope comes from God, the author of forever—the one who invites us, through his Son, into forever.

You have forever, Judson.  I take solace everyday in the fact that you have forever, without the worries and pains of this world, you have forever with the One you love.

And each day leads me closer to forever too.

Until then, my heart is filled with you!

All my love,
Mommy

This is just a hard time of year.  No matter how you slice it, I feel the aches and pains that began four years ago when we realized Judson was slipping through our fingers.  Each year I wonder whether the pain will dissipate, whether I will again feel the full ache of this season. 

Maybe someday.

But today marks four years since Judson’s trip to the doctor that changed the course of our lives forever and the sorrow is still incredibly deep.  My heart cannot help but feel what we felt as this journey began four years ago—the horror of watching our son suffer, all our desperation to hold on to him, all our cries to God, all our weariness, all our fears…fears of losing our beloved boy.  Fears that came true.

I miss Jud.  I miss him terribly.

Sometimes I wonder whether it should still feel like this, whether it should still be this painful.  But it is.  It is just so painful!

Yet, I am now four years closer to holding my perfectly whole son again.  I thank God for the hope!

Previous June 13th Posts:
2010
2009
2008

Categories: grief

“Tell me about the strawberry farm, mom,” I could hear his little voice ringing in my ears.  “Tell me about the tractor ride.”  Then I would start in with the story about our adventures at Tanaka farm.  But  just a few sentences into the story my sweet man would interrupt.  Enthusiastically piping in, Jud would continue the story, “And we ate carrots, and green beans, and then we picked STRAWBERRIES!” opening his eyes as wide as they would go to express his great pleasure.

“And you ate a ton of strawberries, didn’t you Bud, Bud?!”

“Yep, and they were sooooo, yummy!”

Judson, Jessie, and I had visited Tanaka farm on two separate occasions—once at Halloween and again in the spring for strawberry picking; though Jessie was just a baby snuggled in a sling, both of these visits were huge highlights for Judson.  He regularly wanted to replay the experience.

Remembering his trips to the farm filled Jud’s heart with joy…

Jessie and I revisited Tanaka farm this week.  Though we’ve driven by it hundreds of times since losing Judson, this was our first time returning to this special place my precious boy loved.

As I sat in the same tractor-pulled wagon, Jessie snuggled beside me, our previous trips began flooding my mind.  I could hear the enthusiasm filling Judson’s little voice.  I could see the delight on his face as he triumphantly picked each strawberry.  I could see the thrill in his eyes as he pretended to drive the tractor.  I could see his smile as he raced around, climbing hay bales.

No one around me was aware of all that was stirring in my heart.  I was feeling the searing pain of Jud’s absence while simultaneously recalling the sweetness of having my little blonde boy sitting beside me.

Remembering his trips to the farm filled my heart with sorrow…and joy…

It was an acute picture of the multiplicity of emotions triggered by my many thoughts and memories of Judson each and every day, most of which are never known to the people around me.

As Drake is currently away at a work-related conference, I find myself thinking back to the day when I asked him to come home from this same conference four years ago out of concern something was seriously wrong with Judson.  Drake left and returned home immediately without any idea our world was about to agonizingly change.

It has been four years since Krabbe disease entered and altered our lives forever, but time has only served to strengthen our resolve to share Judson's life.  God has been using Jud's story and he is affecting change—change in people, change in research, change in legislation, change in awareness, and more.

To that end, we have spent the last six months working with a lawyer (thank you O’Melveny & Meyers for your pro bono legal assistance) to hone, re-hone, and hone again our mission and purpose for Judson’s Legacy.

Judson’s Legacy will exist to share the life and story of Judson Levasheff in order to:

• * Demonstrate God’s compassion.
• * Encourage, challenge, and comfort people with the hope of Jesus Christ.
• * Raise awareness and fund research for leukodystrophies, especially Krabbe disease.  (A portion of our proceeds will go directly to the Hunter James Kelly Research Institute.)
• * Partner with organizations that minister to those who suffer.

This step of incorporation is intended to give direction and accountability to our ministry while also allowing people to come alongside us in support of our mission.  It will help to stremgthen our current efforts will also enabling us to expand.

As we take this next step, we have a number of start-up costs, which include making the award-winning documentary “Judson’s Eyes” available—if you feel inclined to begin partnering with our organization to help with some of our initial expenses you can use the following Paypal button to make a donation. Please be aware that since we do not yet have 501(c)3 status, donations are not yet tax deductible.

Any financial assistance, no matter the amount, is a HUGE gift as we know there are so many amazing organizations, large and small, that are worthy of support. 

Thank you for caring about our little family.  We are keenly aware that so many of you have undergirded us throughout this journey in a multiplicity of ways and have already been partners in our ministry.  Thank you for your love and support!  We would be blessed to have you continue lifting our family in prayer along with the ministry of Judson’s Legacy—especially that God would bless our efforts and provide the resources necessary to do what we believe he has called us to do.

So much love and gratitude,
Christina (on behalf of Drake too)

We have definitely felt much vulnerability by making Judson’s story public—we are periodically confronted with disheartening critique, strong opinions of opposition, or downright vulgarity.  It’s been toughening us up to endure more and more difficult remarks, a challenge that seems to be par for the course of allowing Judson’s life and story to be shared in a variety of contexts.

But I unexpectedly brushed up against some of the ugliness of humanity yesterday.

Throughout the morning, my phone kept beeping with notifications of new messages regarding Judson's story—evidently I was receiving a fresh onslaught of comments.  So I did some investigating to determine the source that was spawning such interest and discovered Jud’s video had been posted on a site that was generating thousands of views.   

I was encouraged that someone had been moved enough by Jud’s life to share his journey on a platform that had already produced over 30,000 views for the day.   So I poked around the webpage, curious about the site, and noted a link for comments; it indicated over 100 people had already written a response to Jud’s video.  Probing further, I clicked the link and began to read.

There were expressions of sadness and condolences, along with tears and tenderness toward Jud.

But sprinkled throughout the page were many absolutely brutal comments conveying disgust and hatred toward our precious boy and family.  Comments full of expletives and words of violence jumped off the page.  One included “… I hope his mom gets raped…”

I paused at the deprivation, aghast at such an evil thought being anonymously hurled into cyberspace at a woman—a woman who happened to be me.  I felt a lump in my throat as I continued reading.

People piped in, expressing how they were repulsed by some of the comments and standing behind Judson and our family, but then I read this, “I hope he died slowly, from excruciating pain...LOL...little filthy nasty ass-cracker!”

Tears began to pour down my cheeks as pain pulsated through my chest.  I was sickened by the darkness of humanity, the depth of evil in hearts, the sheer wretchedness that people felt comfortable expressing online.

Somehow we had become the random target for these bullets of verbal violence being fired into the air.  And although I could separate myself from the circumstance recognizing these words actually had little to do with Jud and our family, I was disgusted and broken. 

I felt the searing pain of evil as I sat in our big, comfy green chair and wept for humanity—sickened, appalled and horrified by the wretchedness in mans’ heart.  We clearly live in a harsh, broken, deteriorating world.

But I was simultaneously thanking God.  I was thanking God for sending his Son into this depravity to rescue us.  I was thanking God that he is alive and at work in this world.  And in that moment, I was especially thanking God that Judson is safe, that my boy will never again endure the evil of this world.  He is protected from the hostility of these comments.  Judson is free from sin and death.

In this acute experience of humanity’s ugliness, I found myself basking in the beautiful hope of God’s kingdom.  And in the midst of my own vulnerabilities, I felt an even greater sense of calling to share the story of our son who is now completely immune to this kind of evil but lived a life that speaks volumes of truth, grace, and hope into its ugliness.

Let your kingdom be on display through the life of our son, dear Lord.  Let your kingdom come.

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I just want to mention that for every horrible comment we receive, we also receive hundreds of gracious, loving, moving, and kind remarks about Judson and our family.  To view some of those precious comments you can visit Judson's Facebook page or this YouTube video.  Thank you to all who express your love and support!!  

I’ve been feeling the pains of this life deluge me these last several months.  And they seem to somehow be trying to simultaneously drown my memories of God’s provision and care.  How quickly I forget the manner in which God has shown his trustworthiness—the numerous ways he has been tangible with his love. 

Interestingly, throughout Scripture, especially in the Old Testament, we see story after story of the forgetfulness of God’s people.  The presence of trials, distress, and sorrow seem to sink their memory of God’s work in their lives.  Interestingly, we also see the Lord encouraging his people to establish memorials and monuments to help them remember—to help them recall his provision and care.

One instance, in particular, stands out to me.  God had just caused the water of the Jordan river to stand and rise up in one heap while the Israelites were able to cross the riverbed on firm, dry ground. With such an incredible display of God’s power and care for his people it is hard to imagine they could ever forget.  But God asked Joshua to lead his people to set up a monument of twelve stones; the monument was intended to remind them and future generations that “the hand of the Lord is mighty” (Joshua 4:24).  God wanted them to remember his faithfulness.  He knew that more trials, distress, and sorrow would befall his loved ones and he didn’t want them to forget his care.  So they built a visible, tangible reminder.

I am realizing more and more the importance of memorials, monuments, and tributes to God’s faithfulness.

We forget.  I forget.

Pain rises quickly in my life.  A small trigger of heartache seems to gain rapid momentum as it touches every other heartache, forcefully flooding my mind.  All of a sudden I am drowning in pain.  Meanwhile, my hope, my joy, my faith, and my purpose scramble to stay grounded.  I forget.  I forget what God has done.

I need memorials.  I need monuments.  I need to be surrounded with gracious reminders of God’s faithfulness in my life.  I need to recall that I serve a God who causes the waters to stand and rise up in one heap—I need to bear in mind that he will help me once again cross to dry ground.

So today, I build this monument of twelve stones.
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Do you have any "memorials" in your life that serve as reminders to God's faithfulness?

I have been regularly blessed with emails of encouragement, support and hope over the last years; one person who has consistently written is Christy, the wife of my brother’s college roommate, Steve.  At the end of February when I received an email from her with the subject “God Knows” I didn’t anticipate the heart-wrenching news it contained…  “I feel that I have stepped one step closer to what you feel.  Our youngest, a twin, has been diagnosed with leukemia.  I realize it's nothing like Krabbe disease but it gives me a glimpse into your world that I never could have had otherwise...”

My heart sank; I am regularly gripped by the many stories I hear of children facing horrible diseases, but this hit me especially hard—someone who has supported us through our journey with Judson suddenly fearing for the life of their own child.

Steve and Christy’s son, David, was diagnosed with Acute Lymphoblastic Leukemia, and although it is a highly treatable cancer, his case has been more severe than originally anticipated.  Their family is now riding the roller coaster of treatment and prognosis.  Meanwhile, their faith is being beautifully displayed in the midst of these difficult circumstances.

Christy recently emailed me with a heavy question that struck at the rawness of my experience…

Question:  I know you dealt with prayer in your book.  Do you believe that God predetermined everything that Judson would endure?

My heart felt the tremendous weight of her words...not simply because it cut to the core of my raw experience, but because it wasn’t an abstract question for her; she is now deeply wrestling with prayer and the sovereignty of God where the life of her own precious son now hinges upon God’s answer.

Drake and I are still, and probably will always be, wounded over God's answer to our prayers for Judson.  So my response admittedly stems more from my emotions rather than trying to theologically understand God’s decision to heal Judson in heaven rather than here on earth.  And to be frank, much of the time I feel like God gave us a scorpion when we asked for an egg (Luke 11).  But I trust his Word is true and therefore surrender daily to the fact that I don't see God's perspective on the difference between an egg and a scorpion.

We asked.  We asked because God called us to ask.  We begged, we pleaded, we were relentless and at times audacious in our request. 

Could our prayers have/did our prayers move the hand of God in Judson’s circumstance?  Oh man, this is a tough question for me!  In the broadest sense, my heart says "no”—that no matter how much we pleaded for our son’s life, this is the exact journey God had for Jud, much like he did for his own Son.  Yet, I also think there were circumstances in the process where God intervened in the smaller details of our situation because of our prayers.  So yes, I guess I believe God foreordained this journey for Judson, but not necessarily every aspect of Jud’s life. 

Christy similarly expressed, “I completely believe in the sovereignty of God but not that He has predetermined every minute detail of each life.  The men of God in the Bible believed they could change God's mind. They believed He would heal people.  They believed God would interact with them.  I feel like my brain cannot even make sense of all of this.  I suppose that's when God writes on the window of my car TRUST (referencing Eyes that See pages 179, 246, & 262)…  In the end, I always end up with knowing that God's ways are higher than mine.  Who can understand the mind of God?  His ways are always just.”  God knows.

Amen, Christy. 

In my heart of hearts, I do believe prayer can move the hand of God.  Since we don't know when, or how, or why, or where God will move, that may be why faithfulness simply entails asking.

And so I am asking.  I am asking for God to intervene in David’s body and heal him.  Will you join me in praying for the Helm family?  Please visit http://www.caringbridge.org/visit/DavidHelm to follow David’s journey.

Empty.

It’s not a word that generally conjures images of expectation and joy. 

Hungry.  Fruitless.  Depleted.  Hollow.  Unfilled.

Empty.

But …

The tomb was empty.

The tomb that held the Perfect Sacrifice was empty.

Empty.

Emptiness triggering the greatest reason for expectation and joy.

Empty.

And so, I want to be empty.

That I might be filled.

Satisfied.  Flourishing.  Complete.  Replete.  Full.

Empty.

My every breath is filled with hope for the day when God will wipe away every tear, and there will be no more death, or sorrow, or crying, the day when pain will be no more (Revelation 21:4).

But 2010, in particular, left me trying to find hope for this lifetime—my eyes were blurry from pain and my prayers of desperation felt as though they were bouncing around in a dark void, unheard—present hope was eluding me.  I begged God for new glimpses into his faithful provision, of his plan for our future, of his love and care.

When we got news that our home foreclosed and we were being forced to move, leading to very disconcerting issues with our landlord, it felt like the final blow to my already frail hope.  I admit to many episodes of shouting aloud in a vacant room, “Why do you despise us?  What have we done?  Why don’t you care?”  Feeling abandoned and forgotten by God, I found myself in another heap of questions, concerns, and aches.

What I did not know at the time was that the foreclosure was actually part of God’s answer to my pleading and would wind up providing a new glimpse into his faithful provision, his plan for our future, and his love.

We have been living in our new home now for over a month; it has felt like grace pouring down from heaven.  I could not even begin to list here the numerous gifts we are experiencing while living in our new pad.  And while many of them are things we specifically looked for in our search for a new place, there have also been several unexpected blessings.

We are living a block away from my Ventura childhood friend, Kelly—a candle-lighter in our wedding and a dear friend through many seasons of my life, including Jud’s illness, who also has a daughter just 3 months older than Jessie.  How cool is that?!  We moved onto a street with other small children who have already become welcome friends for our Jessie-Girl.  We have an expansive area surrounding our home where Jessie can safely play, ride, scoot, run and explore. And the list could go on…

But some of the blessings have actually been things we didn’t necessarily even desire, yet now see we needed.

Moving has given us a fresh start.  We have new energy.  We have been able to break some of our sorrowful rhythms that had inevitably become part of our daily lives.  Our souls are finding renewal in the haven that is now our home.

Interestingly, in hindsight, the circumstances that followed the signing of our new lease now seem to make it even more clear to me that God was involved in this move, though I couldn’t see it at the time.

What many do not know is that a few days after committing to live in this home by putting down a deposit, we were informed that our eviction was being canceled by Freddie Mac; the foreclosure was being reversed (for those who don’t know, this is absolutely unheard of!).  This meant we were no longer required to move.  However, seeing as we had already fully committed to a new place, a move was still imminent.  This left me incredibly frustrated, broken, and confused, especially because we would no longer receive any of the benefits offered to us as tenants in a foreclosure situation while also needing to continue to deal with our boorish landlord.

I was reeling inside.  Again shouting aloud in a vacant room, “Why do you despise us?  What have we done?  Why don’t you care, God?” 

As I now feel the showers of grace in our new abode, it seems to me that what felt like a cruel joke at the time was actually God’s intervention on behalf of our family—God’s provision and loving plan.  My sorrow had blinded me and led to distrust, but even so, God still graciously showed his faithfulness.

We needed to move.  I’m not sure I could have ever done it on my own.  God knew.  God interceded in the circumstances.  Maybe God even allowed the home to foreclose and then be reversed, just to uproot us.  Whatever the case, I have renewed hope.

Thank you, God.

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Where have you seen God's faithfulness even when you've lacked faith?

One of the things that always touched us about Judson is the manner in which he was consistently mindful of his sister.

The other day Drake, Jessie, and I were sitting outside a strip mall eating lunch when someone who was aware of our journey came over saying, “I was in the nearby restaurant and saw you sitting here and thought, That’s the Levasheff family!, so I wanted to come over and say hello.”

We proceeded to chat briefly.  Then just as she was leaving she said again, “It’s so nice to see the Levasheff family.”

Jessie immediately piped in, “Well, actually, this is not the full Levasheff family.  We are missing one person.  My brother, Jud, is not here.  He died.  So there are four people in the Levasheff family.”

The woman graciously replied, “I know sweetie.  I have his picture on my refrigerator and when I see his smile it inspires me.” 

Meanwhile, Drake and I melted at the way Jessie is always looking out for her brother, just as he used to do for her!  

It is proven that moving homes ranks high on stress charts—our move has been no exception.  I have found the process to be physically demanding, exhausting and taxing.

And though the bodily strains are readily apparent, especially as I was putting up some of our final decorations in the last stages of tangibly settling into our home, my deep sighs of physical relief gave way to vast emotional tensions surfacing within me.  It is as though they were perched in the corners of my heart like ravenous vultures waiting to devour once my defenses were down.

And suddenly I was assaulted by an array of feelings that left me crumpled on the floor wondering what struck me, trying to assess my wounds—so many thoughts, experiences and feelings I had pushed aside to plod through the strains of our transition. 

While a multiplicity of emotions are still swirling in my heart like a tornado, I am reminded once again that much of my emotional health requires taking the time and energy to deal directly with the numerous feelings frequently stirring inside me; ignoring them almost guarantees an enormous eruption.

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What are some healthy ways you deal with your emotional stress?

The last thing we moved from our old home.

We have moved.

Boxes are unpacked, we are slowly putting up decorations, and our new abode is, bit by bit, starting to feel like home.  The process of getting to this point has been rough, but the end result is good.  All the while I have been learning once again to hold everything in my heart all at once.

I love our old home!  I love that it sat on a park. I love that it was spacious and well planned for organization. I love that it was in easy walking distance of some great places. And most of all, I love that it holds precious and significant memories.  I love our old home!

And…

I love our new home!  I love that it is in an amazing area and feels like we just moved into a resort. I love that it is in a setting ripe for community connection. I love that it is around the block from a fabulous school for Jessie. I love the layout of our living space.  And most of all, I love that Jessie is already blossoming in this environment!

I love both homes…at the same time.  I have found it important to recognize that I do not have to deny my love for our former home to embrace our new home; I can value both simultaneously.

This may seem obvious to some, but I have found in life that my natural tendency has been to feel that two distinct things—emotions, ideas, objects and experiences—must be in conflict; that somehow they cannot coexist (i.e. experiencing joy and pain at the same time).  So to love my new home would have led me to compare and ultimately deny my love for my old home.

Moving toward maturity has necessitated learning to embrace contrasting things concurrently.

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Are there contrasting things in your life that you are learning to hold concurrently?