“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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I am a reader of PostSecret.  If you are unaware of PostSecret it is an ongoing community art project where people mail their anonymous secrets on one side of a homemade postcard with the potential of being shared publicly on the PostSecret blog and elsewhere.  (Note: If you choose to visit the PostSecret blog, please be aware that some postcards contain R-rated content and they are not censored.)

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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