Storyofjudson.com - Blog http://www.storyofjudson.com Tue, 20 Jul 2010 00:01:49 CST Tue, 20 Jul 2010 00:01:49 CST http://www.osmek.com/ Storyofjudson.com - Blog Hiatus Tue, 20 Jul 2010 00:01:49 CST http://www.storyofjudson.com

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Dear Readers…


Many of you have engaged my blog now for over three years, others of you have stumbled upon my journey more recently…whether long-time readers or new, and whether known to me or not, your desire to engage the depths of my heart has been a true gift. 


But now I must confess, somewhere along this path I feel as though I lost my grip on what originally compelled me to write—what was once simply my raw, honest thoughts made public, at times became an effort to please my readers and was periodically driven by pressure to keep people engaged.  I began to care too much about what others think when I write.


I am acutely aware of my need to get back to the raw, honest journaling that originally brought life to my soul.  And the best way I know how to do that is to remove those temptations to “please” and get back to simple, private writing for personal growth and expression. 


For quite some time I have been contemplating a blog-writing sabbatical, but recent circumstances have confirmed to me that now is the time to take a break.


So I am planning an indefinite blogging hiatus; I don’t know if it will be weeks or months but I am going to take time to refocus my writing.  At some point I expect I will begin blogging again, though I know not the form or function, but for now I am putting things on hold.


Though I am confident I am making the right decision, it carries great weight for me and I am saddened by the possibility of losing connection to you, my readers, but more than anything I pray I might be able to see God move and work anew, hoping to have a renewed sense of purpose when I return.  


During my blogging pause, I will make a more conscious effort to update people on any significant happenings in our lives through Levasheff Updates and I will continue to share our Joys of Jessie.


If you want to be informed when I resume my personal blog, you can request email notifications by clicking “Connect with Us” on the left-side toolbar and then clicking “Subscribe.”


Most of all, I want to underscore how valuable your support as a reader has been to me, and in many ways has upheld me on this incredibly difficult path I’ve been walking.  As I ask God to speak deeply to my heart during this time, my prayer is that he will do the same for each of you.


With much love and gratitude,
Christina

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Inside Out Mon, 19 Jul 2010 23:58:12 CST http://www.storyofjudson.com This song has really been speaking to my heart.








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Risk Thu, 15 Jul 2010 22:58:00 CST http://www.storyofjudson.com

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Last Wednesday Drake and I were offered an opportunity with great, but uncertain potential—we felt strongly inclined to pursue it, yet it has led us down a road of risk.  We have risked a huge amount of time (10-12 hours for several days**), energy, and resources, all of which we have had a limited supply, along with an emotional investment that can’t be overstated.


And now we’re waiting.  We’re waiting to see if our risk leads to great reward or enormous disappointment.


We all know that without taking risks in life, there is little to be gained.  But right now I am sitting with the very real possibility of disappointment…and I am not handling that prospect very well.


In one sense I look at the intense disappointment of God choosing not to heal Judson and every other disappointment pales in comparison.  But on the other hand, every subsequent disappointment after experiencing the death of my boy feels like it compounds my pain exponentially.


And so, here I sit—struggling in the waiting for fear that there is disappointment and discouragement on the other side.



Do not fear, for I am with you;
Do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.   
–Isaiah 41:10



 


**It is for this reason that I was unable to post my Thankful Thursday last week or do any other blog writing.  My Thankful Thursday this week would simply relfect my gratitude for this opportunity (despite my fears about the result).

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Soothed by the Commonality Thu, 01 Jul 2010 16:46:00 CST http://www.storyofjudson.com

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While visiting the memorial park where Jud is buried, a mother (whom I met before) was kneeling by her 31-year-old son’s gravesite.  She was wailing and howling as she rocked herself back and forth, holding an object close to her chest.  To keep from disturbing her, I remained in my car.  But my window was down and her raw, heart-wrenching cries reverberated through my vehicle, tearing at my heart.


Yet, as I watched and listened to this sacred, private moment, tears flowing down my cheek, I found myself oddly comforted by the familiarity of her sounds.


I realized it was the first time I have ever heard, in person, the passionate cries of a broken mother coming from a voice other than my own.  These were the same sounds that periodically fill the closet of our home, my place of refuge for my most intense emoting.  And it was as though the brokenness of my heart was finding expression and solidarity in her guttural, visceral lament.


As I silently partook in her grief, my soul was strangely soothed by the commonality of our experience.


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Eyes that See & Judson's Legacy Update 



  • TONIGHT (7/1 at 6 pm PST) and TOMORROW (7/2 at 3 pm PST) you can catch a live internet stream of my full-hour interview with Egypt McKee on Life Unplugged TV. 
    Click here to watch at those times!


 

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Thankful Thursday Week #26 Thu, 01 Jul 2010 16:45:00 CST http://www.storyofjudson.com



1.  A timely tax return.


2.  A new windshield for our car.


3.  Fun at Pump it Up.



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4.  Clean teeth from the dentist.


5.  Sweet conversation and coffee with my friend, Kathleen.


6.  Restful time in Ventura with Jessie and my parents.



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7.  The sale of Drake’s car for the amount we had hoped.


8.  The recent investment and commitment of family and friends who believe in Judson’s Legacy.

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A Windshield Tue, 29 Jun 2010 22:14:35 CST http://www.storyofjudson.com

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I am fascinated by my own longings to memorialize everything that is somehow connected to our journey with Judson.


Almost two years ago, after we left a wedding, Drake and I discovered that the windshield on our car had somehow been cracked from top to bottom while we were inside the church celebrating the newly married couple.  But we hadn’t had the means to replace it until this week (thanks to a generous gift from loved ones). 


Yet strangely, when the time came to remove the old windshield, I wanted to keep it.  I wanted to memorialize it.  I wanted to preserve it…


This windshield was significant in my journey of faith during Judson’s suffering—it reminded me of my little man and God’s faithfulness during his suffering; it is the windshield that displayed the word “trust” scrawled into the steam (see below) and I had never washed the word away.


But as I talked about my struggle with family, they kindly noted, “This seems like one thing where you just need to let go!”


And they are right.  But letting go is so hard.  When we have already had to let go of SO much, the little things become far more significant.  Ultimately, I’m just desperate to hold Jud, to keep him close...but I can’t.  So instead, I’ve discovered that I hold tightly to anything that might somehow help me feel like he is near—even a car windshield.



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In the Sand Tue, 29 Jun 2010 22:06:00 CST http://www.storyofjudson.com

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After writing and posting about the Butterfly Circus, I checked my email and discovered a sweet gift from my friend, Rebekah.


For Judson's half birthday she had his name memorialized in the sand of an Australian beach through the ogranization To Write Their Names In the Sand, that is dedicated to honoring children who have lost their lives.  What Rebekah did not expect was that the woman also included a picture of a beautiful butterfly drawn into the sand with Judson's name above.  It is a creative, special, and sweet gift, again beautifully signifiying my hope represented in the butterfly.



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Butterfly Circus Sat, 26 Jun 2010 00:51:00 CST http://www.storyofjudson.com

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“Splendid, isn’t it?  The way they move…full of strength, color, and grace.  They’re astounding…” –The Film Butterfly Circus



Anyone who has followed my journey for a period of time knows that since losing Judson, the butterfly has become a sacred symbol of hope in my life.  Each intimate and unexpected encounter I’ve experienced with a floating silhouette gracefully paints the picture of magnificent new life, particularly Judson’s new life.


But what I had yet to recognize, until this weekend, is how the butterfly can also radiantly represent the regeneration of my own soul through suffering.



“If you could only see the beauty that can come from ashes…The greater the struggle, the more glorious the triumph.”—The Film Butterfly Circus



Never did I imagine when attending the film festival premiering Judson’s Eyes that I would end up viewing one of the most powerful, compelling, and beautiful films I have ever seen, poignantly speaking hope directly into the depths of my own struggle—symbolized with the butterfly.


And it felt as though the story of the Butterfly Circus seemed to brilliantly illustrate the beauty from ashes displayed in Judson’s Eyes




I consider it a gift that I can share the movie here.
I hope all who watch this 20 minute film will also be powerfully moved. 
Furthermore, Nick Vujicic, the actor who plays Will has an incredible ministry called Life Without Limbs
If you’re not familiar with Nick, I encourage you to read more…you just might be forever changed!


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This week at our local butterfly house.


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Your Point of View Thu, 24 Jun 2010 18:30:00 CST http://www.storyofjudson.com

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Dear Judson,


I so often wonder whether you see me now, whether you see how you remain part of our daily lives and conversation, whether you see all the amazing ways you continue to touch people’s hearts, or the little things we do to honor you. 


Today was especially one of those days.  I was shopping, blending, mixing, and baking, all for the purpose of celebrating the blessing of your life in honor of your half birthday…and I was left to wonder what you see, what you hear, what you now know.


Did you see me looking for just the right toy that I thought you might like?  Did you see me blending the bananas and sifting the whole wheat flour, wanting to give you a healthy treat just as I always did before?  Did you see me choosing the absolutely best cupcake from the batch to meticulously frost with extra icing for you? Did you hear Jessie ask if she could wear her "Jud Bud" shirt?  Did you see me cooking one of your favorite meals?  Did you see me set a place for you at the table?  Did you hear Jessie ask to eat the cupcakes outside so that you could hear us?   Did you see my tears—do you see my tears now?


How transparent is the veil between us from your point of view, Juddy?


Because sometimes I feel like I can practically reach out and touch you, feel you, smell you, and hear you.  But most of the time, I feel as though you are a thousand miles away and the curtain between us is especially think, dense, and opaque.


Are you near, Judson?  Do you actually watch over us, as so many say?  Are you peering into our lives and feeling our love?  Do you hear the words I speak and write to you?


Our relationship is full of mysteries to me, but I pray my undying, ever-growing love for you is never a mystery.


Today, I especially celebrate you and the 5 ½ years you have been a fundamental part of my life!  Happy Half Birthday, my little man!  I miss you SO much!!!!!


With My Whole Heart,
Mommy



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Thankful Thursday Week #25 Thu, 24 Jun 2010 18:20:00 CST http://www.storyofjudson.com



Since the documentary has been on my mind all week, this Thankful Thursday reflects my gratitude for all the things surrounding the documentary.


1.   I am still in awe that Sun and Angela Kim read our story in a magazine (winter of 2008/2009) and through the prompting of the Spirit of God felt lead to initiate a documentary about Judson.  Wow!


2.  I could not express enough gratitude to Peter Chung, the filmmaker who gave his whole heart and soul to this project!  What an honor it is to have such a talented director share our story!!


3.  Talent 1 Media is an incredible organization that has been so supportive of our family and it was a gift to have Judson’s Eyes premiere at this film festival.


4.  We had so many friends and family come out for the event and even some unexpected guests that blew us away by their presence.  I am so grateful for the many loving and supportive people in our lives!


5.  It is an amazing blessing to have heard some of the stories of how the documentary and Judson affected people’s hearts who were present on Saturday.  I am so grateful and amazed by the ways God continues to work through the life of our son!


 6.  And the greatest gift to me was that after premiering the movie at 3 pm on Saturday, the festival administrators felt compelled to show the documentary again at 9 pm to a very full theatre!  They did not do this with any other film or project but it was clear God was stirring their hearts to share Jud’s story with more people.


Thank you, Lord, for giving us the amazing gift of seeing the manner in which you can take something that is so awful and use it to bring life.  Amen!



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Glorious and Beautiful Thu, 24 Jun 2010 16:37:00 CST http://www.storyofjudson.com

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I have stared at a blank page every night this week, wanting to express our experience with the documentary, but words have been inadequate to describe all that has been stirred in my soul.  The experience on Saturday has been a constant on my mind and attached to a multiplicity of emotions that have been ever-flowing since.


When Peter, the Director of the film, first set foot in our home about a year and a half ago to interview us about the potential project, I had no idea how much this unknown, Korean man with long hair (he has since cut his hair) would become a dear part of our family and beloved brother.


Everything we have done to date in sharing Judson’s story, including the book, have been our own thoughts, feelings, and experience, not necessarily filtered through the lens of another.  So to hand our story over to someone who began as a “stranger” felt incredibly risky—the sharing of our journey would suddenly be subject to the interpretation of another.  Hence, when we first started this project, I could never have imagined how much we would grow to trust Peter and have complete confidence in the outcome.


Peter dove into our lives, into our joys and into our deep pain.  He chose to immerse himself in our experiences, often sitting on the other side of the camera with hot tears pouring down his cheeks.  He felt it all with us, not detached, but as a loving friend wanting to engage the depths of our souls.  And it was as though he was holding our precious Judson with utmost care, compassion, and tenderness.


Furthermore, Peter bathed the project in prayer, spoke of his filmmaking as an act of worship, and wanted only to use his talents to honor God.  Thus, the process of making the film became unquestionably glorious to God and beautiful to us.


In turn, the film was glorious and beautiful!


It was surreal to sit in a Los Angeles theatre and see our story play-out on the big screen before us.  Judson’s Eyes was so incredibly well-done and we were overwhelmed by the honor of being subjects of Peter’s work.  But more than anything, I was in awe of what God is doing to bring redemption through our pain.


I am challenged once again to humbly submit to all God may want to do with our lives and story!


For various reasons, I expect it will be several months before we are able to make the film available on Judson’s website but I certainly look forward to sharing it in the future…



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Help Thu, 17 Jun 2010 21:26:00 CST http://www.storyofjudson.com

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I found myself on my knees this afternoon, calling out, “I need help, Lord.  I need help,” over and over again as my eyes swelled with tears.  The heaviness of life suddenly felt like it was going to crush me, leaving me struggling to find my next breath.


“Please help me, Lord!”  I exclaimed in the solitude of my bedroom.


On the floor in a heap, I noticed my phone on my nightstand and suddenly felt inclined to read Charles Spurgeon’s Morning by Morning (an application on my android):



July 17…

"Help, Lord."—Psalm 12:1.

David mourned…and therefore lifted up his heart in supplication.
He evidently felt his own weakness, or he would not have cried for help…
The Psalmist runs straight-forward to his God, with a well-considered prayer;
he knows what he is seeking, and where to seek it…

"Help, Lord," will suit us living and dying, suffering or laboring, rejoicing or sorrowing.

In Him our help is found…


 The answer to the prayer is certain if it be sincerely offered through Jesus…
His sure promise stands, "Fear not, I WILL HELP THEE."

“I need help, Lord.  I need help!”

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Thankful Thursday Week #24 Thu, 17 Jun 2010 19:38:00 CST http://www.storyofjudson.com



1.  The opportunity we have been given to attend the Krabbe symposium in July this year.  It will be Drake’s first time attending and I look forward to experiencing it together as a family.


2.  A fun family trip to Disneyland and the gift of having Drake with us.



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3.  Health insurance.


4.  Watching Drake as a dad and the way he loves BOTH his kids so well!



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5.  Auntie Rachel and her love for Jessie-Girl.  She took Jess on a date this week and spoiled her with accessories for her hair and more.


6.  The way Jessie touches my heart by wanting to release every balloon she receives to her brother.



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7.  The fun of a spontaneous ski ball tournament as Drake and I were walking by Chuck E. Cheese.


8.  Having lunch with my little girl at the local nature center and putting our toes in the waterfall.



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9.  Seeing the beauty of metamorphosis in action…



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Cling To What Is Good Sun, 13 Jun 2010 19:41:00 CST http://www.storyofjudson.com

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The day of Jud's emergency MRI.



Today, June 13th, marks three years since I took Judson to our local medical center with concerns for his health; the words from the doctor still ring in my ears, “This is likely very serious.  We need to do an emergency MRI.”


And from that moment our lives were to be horrifically changed forever…because of Krabbe disease.


I hate Krabbe disease.  I hate it with every ounce of my being.  I hate what it did to my little boy.  I hate what it does to other children.*  I hate how it slowly sucks every bit of bodily life out of a child while all who love them are tormented as they must powerlessly watch.   And I hate how it leads to a bottomless well of pain.


As I see it, Krabbe disease is right out of the pit of hell; it is so evil, wretched, heinous, wicked, and dreadful.   It intimately reminds me that the enemy prowls around like a roaring lion seeking to devour and destroy (1 Peter 5:8) and he would delight in seeing Krabbe disease demolish families, faith, and hope.


But in actuality, experiencing the evil of Krabbe disease has caused me to hold more tightly to the One who is good, to the God who loves and cares for me.  Although it has been three years since that horribly fateful day, and my life has since been lived in a sea of pain, I am reminded that this suffering is but for a little while (though it doesn't usually feel like it) and some day, the God of all grace will call me into eternal glory, just as he did my Judson, and the Lord himself will restore me (1 Peter 5:10).  But until that glorious moment, I am resolved to hate what is evil and cling to what is good .


Thus, I hate Krabbe disease, but I cling to God!



WARNING: THIS VIDEO IS HEART-WRENCHING








This is some unseen, uncut, raw footage of Jud, just 10 days before he died (keep in mind he was running in our park just 6 months prior).  It is incredibly difficult to watch but it shows the heinousness of Krabbe.  You can observe how Judson’s mind is intact as he responds to my voice, but he is unable to see, speak or move.  Note: He cries at the end when I ask him if he wants a drink -- he was losing his swallowing reflex, making it difficult to eat and drink.



Do you hate Krabbe disease too? Please help us raise awareness of this wretched disease!





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Eyes that See & Judson's Legacy Update 



  • This Saturday, June 19th, at 3 pm is the premiere of "Judson's Eyes," a 15-minute documentary about our little boy, directed by Peter Chung.  The Talent One Media Film Festival at the Japanese American Cultural & Community Center in Los Angeles is open to everyone with a suggested donation of $10 that will benefit efforts to end human trafficking.  If you live in the area, please consider joining us for this cool event!

  • We are extending an Eyes that See opportunity to just my faithful blog readers.  For the next 2 weeks you can purchase a personalized signed copy on Judson's website for just $12 ($3 s/h USA).  On the PayPal page, click "Add Special Instructions to Merchant."  Type BLOGREADER and give instructions as to whom you'd like the book to be personalized.  We are grateful for your support as a reader of my blog! 

  • Did you know Eyes that See is available internationally?  You can find the book at Amazon UK or Infibeam.


*This post is dedicated to all the families I know who have lost children and grandchildren to Krabbe disease.  This evening I think especially of Melissa Boice who lost her beautiful son, Kenji, to late-onset Krabbe disease on June 13, 2008 -- two years ago today.

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Ever So Gradually Sat, 12 Jun 2010 10:41:00 CST http://www.storyofjudson.com

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Sunday, June 6



Whenever Jessie gets an injury or wound, I often state, “Isn’t it amazing how God made our bodies to heal?  And I bet you’ll heal really quickly, Jess.”


In fact, last Saturday she fell and scraped her face pretty badly…yet, today, less than a week later, her abrasions are practically gone.


I cannot help but marvel at how rapidly our bodies heal (most of the time).


But every time I say those words to Jessie, they cut at my heart like a sharp razor--for I am all too familiar with the heartache of caring for a body that doesn’t heal.


And ironically that heartache will never fully mend this side of heaven.


The body heals quickly but the soul heals ever so gradually.



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Friday, June 11


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Thankful Thursday Reflection Fri, 11 Jun 2010 00:24:38 CST http://www.storyofjudson.com




Somehow, most of the expressions of gratitude in our world seem more at home at a tea party than in the tumble and turmoil of life.  You see, gratitude is a lot more than Hallmark cards, jonquils and pretty notebooks.  Gratitude is a lifestyle.  –adapted from Choosing Gratitude by Nancy Leigh DeMoss



This is my 23rd week of engaging the discipline of gratitude on my blog with Thankful Thursdays, and while there have been many weeks where my heart has been infused with perspective after thinking through all the gifts that have been present in my days, truthfully, there have been other times when it has felt more like a rote, lifeless exercise.


But is this not the nature of disciplining ourselves?  Sometimes we richly experience the fruit of our efforts, while others times we must simply bear down and do what we believe is best even if it feels hollow.


Yet, I want gratitude to permeate my very existence, where it goes well beyond a list of blessings, but in the passionate pursuit, transforms my sorrows and pains with grace.  My heart must undergo much renovation to experience such, but I continue to pray that this simple act of Thankful Thursdays can be a tool to help gratitude pervade my life.


So as I reflect today, I am overwhelmingly thankful for God's patient, tranforming grace!

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A Person Mon, 07 Jun 2010 20:23:32 CST http://www.storyofjudson.com

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“Mom?”


“Yes, Jessie?” 


“I wish Paisley were a person,” my ladybug declares, musing at the breakfast counter.


“Oh, that’s interesting.  Why, Buggy B?”


“Well, I wish we had more people around,” she answered.


“You want more people around?” I questioned with curiosity.


“See, if Paisley were a person,” her hands moving dramatically as if to help explain and emphasize her assertion, “there would be another kid around.”


My heart drops, knowing where this is going.


“I wish we had another kid around that I could play with.”


“I wish we did too, Jessie.   I’m so sorry we don’t,” feeling the ache of all Jessie has lost because of Krabbe disease—her only brother and the all too high risk for her to have more siblings (biological).

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The Deception Thu, 03 Jun 2010 19:31:00 CST http://www.storyofjudson.com

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I am a proud person—and I’m not proud of it.


I am realizing more and more just how overly protective I am of my own dignity and highly concerned about external perceptions; I don’t weather a bruised psyche very well.


A few nights ago, I woke out of a fitful sleep, sweaty, my heart racing and my mind plagued.  I was stirred awake by my inability to let go of a humbling circumstance that was disproportionately affecting me.  In fact, lately I have experienced what I would describe as a multiplicity of circumstances that have tweaked at my ego and poked at my pride.


Truth is, I fall hard with the temptation to be, or appear to be, relevant, competent, put-together, healthy, valid, and the like; when these perceptions are directly or indirectly threatened, I crumble.  My pride gets in the way of being submitted in faithfulness to an audience of simply One.


I was awakened to this reality in my own life when someone close to me recently declared, “God is clearly chipping away at your pride.”  In hearing her words, I was immediately conscious of the fact that God does not need to chip away at anything if it is not a problem.


My pride is a problem…and I don't want to be deceived by pride.


Because pride is deception.  It is to deceive myself that I somehow hold worth outside of God’s breath on me.  It is to wrongly elevate myself when only God is to be exalted.  Actually, pride leaves little room for God at all, but a humble heart continually and honestly recognizes that everything points to the praise of God alone.



When pride comes, then comes disgrace, but with humility comes wisdom. –Proverbs 11:2



Oh dear God, hear my confession.  Break down my stubborn pride and allow your grace to flood my heart.

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Thankful Thursday Week #22 Thu, 03 Jun 2010 17:31:00 CST http://www.storyofjudson.com



This Thankful Thursday is dedicated solely to our dear friends Eric and Laura Baesel.


Some couples never in their lifetime have friends that would go to the ends of the earth for them, love them through every up and down, and sacrifice through thick and thin.  But the Baesels have been just those kinds of friends in our life.


We have known them for almost twenty years now – we attended college together, were involved in each other’s weddings (’94 and ’96), attended the same church for years, and had our first children, Judson and Keira, within 11 weeks of each other.  We have also weathered the trials of life with one another: layoffs and joblessness, ministry challenges, financial struggles, infertility, miscarriages, and even death.  Eric and Laura are core to a multitude of our memories that include laughter, honesty, awe, frustration, surprise, disappointment, awkwardness, hope, sorrow, and joy. 


Interestingly, the Baesels moved to Texas in 2001 and many of these experiences have been over the miles or through periodic visits; our friendship has uncommonly withstood the distance.  We have discovered that the Baesels are woven into the very fabric of our lives even when we are no longer able to share day-to-day life together.


Eric and Laura, along with their three kids (Keira—Judson’s best buddy, Connor, and Carter), have been in town this week.  And although the last time we saw them was a year ago, it feels as though it were yesterday.  We have enjoyed a couple visits to the beach, a trip to Disneyland, two plays, and sweet conversation over meals. 


As I was driving home after spending time with them this morning, I was overcome with tears of gratitude.  Life has taken some pretty heinous turns for us, but Eric and Laura are still by our side.  I kept recalling the phone call I made to them on the day Judson died...


“We’ll be on a plane tomorrow,” they responded.  And they were.  That says it all.


Thank you, God, for the Baesels!



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2003 with Eric and Laura

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This week with the Baesels

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Judson and Keira

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Keira and Jessie

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Carter, Keira, Jessie, and Connor


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Blurry Lines Mon, 31 May 2010 02:18:00 CST http://www.storyofjudson.com

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Dear Judson…


I am concerned.


Our intent in sharing your life has always been for God’s story of hope and redemption to be told through your beautiful spirit and that your legacy be honored.  But I am becoming concerned that people are easily forgetting that you are a person, a dear boy, our beloved son. 


You are not a commodity to be used for gain.  You are not a platform to be used as a springboard for someone’s soapbox.  You are not a means to an end.  You are not a tool to manipulate emotions.  You are not just a nice concept.


You are a boy.


You are my boy and I feel so incredibly protective of you.


I have listened to the publishing industry talk about the “bottom line” with your manuscript, intent on monetary gain.  I have seen people show your videos for cause-related events without ever actually acknowledging you.  I have read rude comments posted to your videos on YouTube.  I have seen your book underneath a pile of junk at someone’s house.  I have even seen someone set their mug on your face as it graces the cover of your book.   


What have we done that the sacredness of your life has become a coaster for somebody’s coffee?  What have we done that the beauty of your character has been relegated to simply being a mechanism for organizational gain?  What have we unintentionally done?


I cringe.  My heart sinks at the thought.  And although I trust that most people who come in contact with your life handle your story with appropriate respect…I know there are others who have not.  It hurts.  I recognize that no one loves you the way I love you.  They do not know you the way I know you.  They do not respect you the way I respect you.  So they cannot possibly care for you the way I care for you.  But…


This causes the lines to get blurry.


I am so sorry, Jud Bud.  I am so sorry for any and every way you have been even remotely disregarded or disrespected in this process.  It makes me want to rescue you all over again, sometimes yearning to retrieve every piece of you that is out there, pulling you close to me so I can safeguard your life and story.  I desperately want to do right by you and see you appropriately honored here on earth but I am broken that there have been times others have not.


But I thank God you are being rightly honored in heaven—I bank on it every single day, certain our Father had a special place of respect prepared just for you, his little champ.  I cannot wait to see you in glory.  I often envision you running up to me with a shimmering crown slipping down over your eyes because it is two sizes too big, but filled with magnificent jewels.  All the while you are saying, “Mommy, mommy, look what God gave me!” as you beam from ear to ear.


Judson, we want to continue to be faithful to walk through whatever doors God might choose to open for your story, but we also want to be careful, prudent, cautious.  We pray for wisdom as we continue to seek to be good stewards of your little life!


I love you all the way to the moon and back, Buddy Boo!


With every fiber of my being missing you,
Mommy

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Sparkly Pendant Fri, 28 May 2010 00:40:00 CST http://www.storyofjudson.com

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For multiple reasons and no particular reason at all, I was having a very rough morning today.  Despite my sadness and tear-stained eyes, Jessie and I went on our usual jaunt to Starbucks.   Shortly after our arrival, Jessie, being very gifted at socializing with adults, struck up a conversation with two nearby women who had sparkly gems scattered about their table and seemed to be busy discussing their rhinestone business .


As Jess chatted with them, admiring their “bling,” I watched some videos of Judson on my phone, also keeping an eye on her.


I noticed one of the women went out to her car for a moment.  When she returned, she opened a package and proceeded to place a rhinestone necklace on Jessie Girl.  My little lady beamed, bounding over to me in pure bliss.  Upon seeing the sparkly pendant that graced her neck, tears of gratitude sprung from my eyes—it was a butterfly—“a sweet reflection of marvelous rebirth, like the little boy with my affection no longer bound by earth,” (Floating Silhouette - May 14, 2009).


This special gift for her was beautiful and sacred encouragement to me!

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Thankful Thursday Week #21 Fri, 28 May 2010 00:29:00 CST http://www.storyofjudson.com



1)      Swinging in sync while chatting with Jessie at “airplane” park.  It was a moment I wanted to tuck into my heart to remember forever.


2)      The relationship Jessie is developing with Paisley kitty.



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3)      My friend Cristina’s blog post about a recent conversation with her son, Caleb.


4)      Jessie and I had such a fabulous time at Disneyland this week.  We are continually grateful to Sarah J. who gifted us with annual Disney passes!



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5)      The incredibly generous gift we received this week, directly addressing one of our greatest tangible needs.


6)      The Drive 4 Hope golf tournament was a tremendous gift this week on multiple levels: the honor of speaking at the event, the opportunity for Jessie to develop further relationships with Isabella and Kaitlyn who have both lost siblings to Krabbe disease, the chance to develop deeper friendship with Kathleen & Rod Scott—the amazingly gracious and giving people who hosted the tournament and dinner in honor of their daughter Jacque, my friends Linda and Anne who drove more than two hours to attend the event in support of Judson and our family, the article about the event that appeared in the Ventura County Star newspaper, and the chance to spend extended  time with my parents who live near the tournament venue.  What a blessings on multiple levels!



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The Drive Fore Hope

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Jessie with Isabella who lost her sister Jacque and Kaitlyn who lost her brother Jackson.


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Thankful Thursday Week #20 Fri, 21 May 2010 10:47:00 CST http://www.storyofjudson.com



1)      The book Choosing Gratitude given to me by my friend Kelly.


2)      My Bible Study Small Group and our time together this year.



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3)      Sharing a meal with new friends from church at a Grace Home Dinner.


4)      The flowers that someone left at Judson’s gravesite again.



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5)      Several good cleansing cries this week.


6)      Baby animals and the fun of kids playing with little chicks.



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7)      Chatting with someone at a party who introduced herself as a reader of my blog.


8)      The manner in which Paisley is determined to win Drake’s affections.



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 10)   My time filming Life Unplugged TV.



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A Thud Wed, 19 May 2010 09:25:00 CST http://www.storyofjudson.com

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While sitting on our couch yesterday afternoon playing with Paisley kitty, Jessie went upstairs to grab the green spray bottle in case we needed to discipline our sweet putty tat (a great deterrent for unruly cat behavior).  After grabbing the squirter, Jess started bounding down the stairs.  Suddenly, I was startled by a huge thud and then many subsequent bumps.  I looked up to see my little girl tumbling, like a cartwheel gone awry, all the way down our hardwood stairs. 


My heart instantaneously began racing, and before she had even started to cry, I bolted over there and scooped my lady into my arms.  Secure in my embrace, Jessie’s spicket of tears burst.


“Are you okay, Sweetie?  Where does it hurt?” I asked, while feeling deeply my own heartache knowing she was in pain.


“My noggin,” she sobbed, placing her hand on the back of her head, “And my back, and my foot.”  She moved her hand to her big, now red, toe.


“Oh, I am so sorry, Sweet Bug!  I’m so sorry you fell down the stairs,” I consoled, rubbing her head and checking her back to assess the degree of injury.


It didn’t take long for her sobbing to turn to a whimper as she snuggled into the comfort of my arms while I showered her with soft kisses.  Meanwhile my heart was still pounding erratically in my chest.


“I love you,” I whispered in her ear.  “I love you so much!”  Yet, I was entirely aware of how incapable these words were of fully expressing how deeply my heart is tied to her and how affected I am by her pain.


Before I knew it, Jessie had popped up out of my arms, wiped the tears from her eyes, and was jumpin’ and playin’ in the living room as if nothing had ever happened.  But, as I watched her bound over the ottoman, the bruise on her back visible to me, I was still reeling from the fall, triggering the realization that I was likely hurting more from the experience than she was; her pain was essentially more painful for me.


Which caused me to consider…


Could it actually be that God has felt and does feel my pain even more acutely than I do?  Does his love for me run so deeply that when he sees me struggling or hurting, his heart breaks more than my own?  Are words even incapable of fully expressing how deeply his heart is tied to mine and how affected he is by my pain? 


In certain ways it is hard to imagine.  Though I may believe it in truth, sometimes I don’t feel it experientially—truthfully, sometimes God feels callous and distant in my sorrows and his love eludes me.  But as a perfect Father, a parent who cares more deeply and fully than I can even fathom, it seems impossible not to conclude that God’s love must be demonstratively greater than any parent’s compassion for their hurting child.


I know what I felt watching Judson suffer…God feels that kind of love for me?!

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I Made A Deal Sun, 16 May 2010 18:53:00 CST http://www.storyofjudson.com

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So much of my blog is about the frictions in life: the struggles, brokenness, pain, and wrestling that occur within.  This is where I feel most called to write.  However, it does not and cannot express the whole of me and my experiences; often the fun, the joys, the triumphs don't necessarily find their way here, likely giving a skewed perspective to those who only know me through my blog. 


So today, I am simply posting about silliness and fun.


I mentioned in a Thankful Thursday that my friends Sarah, Laura, Krista, and I randomly ended up accepting an invitation to be in the audience for the ridiculous game show "Let's Make a Deal."  What I could not reveal at the time was that I was actually chosen from the audience to participate in the show.   My time wheelin' and dealin' with Wayne Brady can be found in the fifth segment about 24 minutes into the show and you can also look for my friends in the audience.  Here is a link to the episode:



CBS "Let's Make a Deal" May 14, 2010



If you watch it, I'd love to know whether you think I made a good deal or not?  You can post a comment here.


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Eyes that See & Judson's Legacy Update 



  • I will be in the Loma Linda Broadcasting studio all day tomorrow, Monday, May 17th, filming two episodes sharing Judson's story on Life Unplugged TV, a satellite talk show for young adults.  I will keep you posted as to when the episodes will air and would covet your prayers for God to work mightily in and through that time!

  • Judson's video will be shown and I will be the keynote speaker at the Drive Fore Hope in Camarillo, CA this Friday, May 22nd, benefiting the Hunter's Hope Foundation.  Tickets for golfing, the dinner & presentation, or both are still available if you live in the southern CA area and would like to support this life-saving cause!

  • The documentary of Jud's life is in post-production and will actually be complete in June.  The first viewing of the film, titled Judson's Eyes, will be at the Talent One Media Film Festival.  All are welcome to come see the film and support this cause-oriented event.

  • Eyes that See was listed in the What to Read section of the nationally acclaimed OC Family magazine and we have many other exciting things happening with the book down the pike.  We will continue to keep you posted!! 


Thanks for caring!

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Waiting Fri, 14 May 2010 22:55:30 CST http://www.storyofjudson.com

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So much of life entails waiting.  Waiting in traffic.  Waiting for food at a restaurant.  Waiting in line at an amusement park.  Waiting to use a public restroom (okay, men may not have this problem).  Waiting for ordered items to arrive in the mail.  Waiting for a friend at a coffee shop.  Waiting to earn the money to buy a special item.  So much of life entails waiting.


Yet, strangely we live in a “now” culture of instant gratification.  We have credit cards, microwaves, Tivo, fastpass, instant messages, and the like.   We have become accustomed to immediacy.   If a desire or experience is met with delay we may forgo it entirely, choosing an alternative that does not require waiting.


Of course, there is nothing inherently wrong with many of the advances that have enabled us to engage life with instantaneousness, but this mentality may be threatening our souls by spilling over into our journey of becoming, our process of growth.  Are we inclined to supplant the necessary learning that occurs through the waiting?


It is in the waiting where character is developed.  It is in the waiting where we recognize we are not self-sufficient.  It is in the waiting that God can do a deep work in our hearts.


Having just finished a year-long study in Genesis, something that stood out to me throughout the book is how much waiting was involved for the people of God—waiting for the Lord to move, intervene, or fulfill his promises.  According to our human time frames, rarely did God act quickly.  It seems waiting was an essential part of his plan, divinely used to shape his people.


It is estimated that Noah waited over a 100 years from the time God told him to build the ark until the floods rose.  Abraham and Sarah waited 25 years before conceiving their promised son, Isaac.  Joseph waited 22 years in faithfulness for God to fulfill his plans for Israel through him.  And there are numerous other circumstances in Genesis (and throughout Scripture) where the Lord worked through the waiting.


Sometimes God’s people tried to circumvent the process of waiting by executing their own plan apart from him.  Other times they waited faithfully in the pit of difficult circumstances for God’s intervention.  Either way, it is clear to me that God was at work in the waiting.


Truth be told, I don’t like waiting.  I am a product of our “now” culture.  Patience is a virtue that easily eludes me and I have discovered that waiting often hurts.  I struggle to wait.


For quite awhile Drake and I have been waiting on God for certain circumstances in our life to change…they still have yet to change.  This long season of waiting has entailed a lot of pain (coupled with our brokenness over Judson) and I have been wrestling with God over feelings of abandonment, wondering if he hears our cries, wondering if he cares that we are struggling. 


I imagine Joseph may have felt similarly when he was in the pit, when he was in jail, and when he was forgotten by people.  But he waited.  He waited faithfully for 22 years, serving the Lord despite his circumstances!  Joseph waited well.


I have not learned the art of waiting well.  Instead, I desperately long for our circumstances to change so as to eliminate anymore waiting and the struggle that comes with it.  Yet, God is calling us to be faithful in the waiting, to trust and rely on him in the waiting, to find our sufficiency in him alone. Rather than try to circumvent the waiting, I need to submit to the work God wants to do in my heart through it—however long it may be. 


 



The blessedness of waiting is lost on those who cannot wait, and the fulfillment of promise is never theirs. They want quick answers to the deepest questions of life and miss the value of those times of anxious waiting, seeking with patient uncertainties until the answers come. They lose the moment when the answers are revealed in dazzling clarity.  --Dietrich Bonhoeffer


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Thankful Thursday Week #19 Thu, 13 May 2010 16:18:05 CST http://www.storyofjudson.com



This week I thought I’d switch to a Thankful Thursday quick list:


1)      A day of solitude on Friday: the beauty of nature, quiet, rest, and time to reflect. 



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2)      Hanging out with my parents and Howie in Ventura.


3)      Judson’s flourishing tree.


4)      Paisley kitty.  She is proving to be a perfect pet for Jessie and loves to just hang out with our little girl.



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7)      Our time at the park with Ella, Abie, and Aunt Danielle.


8)      A sweet Mother’s day note from my mother-in-law, Lori.


5)      Mrs. Toberty who gave Jessie a special gift of gardening supplies, along with Jessie’s buddy, Isaac, with whom she could enjoy it.



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9)      Coupons – they allow us to enjoy things we might not otherwise have the chance to enjoy.


6)      Auntie Sarah and Uncle Dean who love Jessie so sweetly!



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10)   My friend Deidre who cut and glazed my hair this week…free of charge.


11)   Jessie, Jessie, Jessie…she and Drake could be on this list EVERY week but this week I was particularly grateful for her tenderness toward others!



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My Mama Sun, 09 May 2010 22:22:00 CST http://www.storyofjudson.com

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One of the most heart-wrenching aspects of Judson’s suffering was the powerlessness I felt to remove his pain, my inability to do anything that would alleviate the debilitations that were sweeping rapidly through his body.  I just had to hold him and hurt with him.


This tore at the very core of my innate responsibility as his mother—the responsibility to protect, defend, guard, and shield my precious child from danger.  But I could not protect Jud; my powerlessness in his suffering shredded my heart.


As I watch Jessie grow, I become more and more aware of the pains in life that may touch her—the unmet longings, the hurt feelings, the broken relationships, the disappointments, and so on.  Just the thought of seeing her affected by genuine pain overwhelms my heart with sadness; I want so much to protect her little spirit, her precious innocence, her tender heart from the aches of this broken world.


But I also realize that much of my role as a mother becomes less about being able to protect Jessie and more about teaching my girl how to weather the stings of life with grace and truth.  I must slowly let go, meanwhile guiding her into maturity, allowing her to develop strength and character through her pain.  Though my innate responsibility to shield Jessie from danger will never change, I will become less and less able to protect her; instead, my role will shift to holding her and hurting with her in her pain.


This is one of the greatest gifts my mom has given me.


My mama has had her heart absolutely shredded through not only watching her grandson suffer and die, but feeling the powerlessness of watching her daughter endure severe suffering too.  I know that even in my adulthood she longs to protect me from pain, and although that is impossible, what she has done incredibly well, is to hold me and hurt with me.


I cannot imagine this life journey without my mom.   So today, Mother’s/Women’s Day, I take special time to honor the woman who has helped to give me the strength to persevere.



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Sandy Shore Fri, 07 May 2010 17:52:41 CST http://www.storyofjudson.com

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My Dear Jud Bud,


I’m sitting on the beach where I used to play as a child.  It is beautiful.  I recall those days when I had not a care in the world…running, laughing, and playing, a time in life when my only concern was the chaffing sand in my bathing suit. 


You and I played on this beach together too.  You squished the sand between your toes, climbed on the rocks, wrote in the sand with a stick, all the while hesitating to let the tiny waves lap onto your feet.  It was November 2, 2006; we never fathomed we were just a year from your death.


But now, today marks 2 ½ years since losing you…


Here I lay, prone on the same beach, watching the tears drip off my face, saturating the sand below.  Who would have imagined in my childhood days on this shore that almost thirty years later I would be the woman sobbing on the seaside as other children play nearby, heartbroken over the turns that life has taken, heartbroken over losing you.


My heart is filled with inexpressible longing for you, Judson, and great anguish over how unfamiliar you now feel.  I don’t know whether you are still almost three years old, or aging in heaven, or already a mature soul, but I am acutely aware that who you are, fully alive in heaven, is different from who you were.  And although you are now perfect in every way, who you were is all I know.


I so desperately want to know you now.  Every day I wish I could reach beyond the veil that separates us and peer into your world.  Maybe I could catch a glimpse of you splashing and laughing on a sandy shore, truly free from every encumbrance of this earthly life, your smile glistening off the water as you splash and play.  But instead I am relegated to longings that cannot be fulfilled by my imagination.


Oh how I miss you, Juddy!  And with each passing day, my longings for you grow.


Until that day when you and I are reunited on that glorious shore, I hope you are able to peer beyond the veil and see my deep love for you and the impact, by God’s grace, that your sweet spirit is having on people’s lives.


I continue to stand in awe that I have been given the gift to be your mama.


I love you with all my heart,
Mommy



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The Race Marked Out Fri, 07 May 2010 01:19:00 CST http://www.storyofjudson.com

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God’s Word is powerful, and it is especially profound when a specific passage is brought to your attention that directly speaks to your heart and current circumstances authoritatively.


On Monday, after writing Weight of a Piano, I was acutely feeling the heaviness of my pain.  Weary.  That afternoon I was sitting in a meeting where the following passage of Scripture was read aloud…



Run with perseverance the race marked out for you.
Fix your eyes on Jesus, the author and perfecter of your faith…
so that you will not grow weary and lose heart
Therefore, strengthen your feeble arms and weak knees.



As the words of Hebrews 12 filled the room, tears pooled in my eyes.  The truth deeply penetrated my pain, offering comfort, encouragement and hope—which was, in its application, validating the very principle contained therein.


Carrying this “piano” is the raced that has been marked out for me, it is my marathon… I am simply called to persevere, to keep at it, even though at times it may feel as though I cannot go another inch.  And when “my knees are buckling under the weight,” being mindful of my Father and his love for me can, indeed, fortify my faith and strengthen my weary heart.


Oh God, I continue to cry out for eyes that see you in my pain.

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Thankful Thursday Week #18 Thu, 06 May 2010 19:06:00 CST http://www.storyofjudson.com



1.  My friends Kelly and Sarah stand out as my greatest gift this week.  We shared dinner on Monday and the bulk of our time turned out to be the two of them listening to me, crying with me, and hoping with me.  Meanwhile, we were also able to go to Disneyland the next day, laughing and playing together with the kiddos.  I am infinitely grateful for their deep love and friendship, especially the manner in which they are willing to endure the loss of Judson with me while experiencing the joys of life together too. 



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2.  This week reminded me that the Lord still has many people supporting us and upholding our family in prayer on this journey of brokenness.  I am filled with gratitude for all the people who encouraged me with their words this week and for the tears that have been shed on our behalf; every word and tear is dear to us in a way people probably cannot even imagine!


3.  One of the blessings of teaching for the Women’s Bible Study at our church is that I get to be part of an awesome team of women, all of whom are one or two stages ahead of me in this life, enabling me to glean from their experience, hearts, and understanding.  Our team met together this week and I am so grateful to be able to share in ministry with them!


4.  I marvel at Drake.  He has weathered so much and yet he humbly and honorably continues in faithfulness and trust.  I am always thankful for my man!

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Weight of a Piano Mon, 03 May 2010 10:59:00 CST http://www.storyofjudson.com

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I woke up this morning and whimpered to Drake, “I’m just not doing well,” a phrase that often escapes my lips.


“I get it.  I know,” he sensitively replied as he usually does.


“But I’ve been saying that for almost three years now,” I sighed.


“I know.  I get it,” he reaffirmed.



Very few now know
the tears still inside me.


Is it even safe to let others in?


People think it’s mostly past.
They think I’m mostly better.
They want me to be better.


I think, I hope, and I pray
that things will be better too.


But the pain floods me.


Things aren’t all better.
My Judson is gone.


How much longer, God?
How long does this last?


--adapted from Finding Hope by Kenneth Haugk



My heart just hurts.  I remain so broken.


I am infinitely weary of my pain, fatigued and drained over constantly carrying the weight of an unalterable ache, compounded with many other aches. Living with the death of my boy is like moving and maneuvering through life with a piano on my back.  I have now become accustomed to its presence, functioning under its weight, but it is arduous and grueling nonetheless.  It’s not that it inhibits laughter or joy, and certainly there are times I am less conscious of its permanence, but the intense load continues to be incredibly cumbersome and restrictive.   And sometimes it feels as though my knees are buckling under the weight of this pain; I still fear it will smash me.


My heart just hurts.   I remain so broken.



Hear my cry, O God
I am feeble and nearly crushed;
I groan in anguish of heart.


I'm on my last legs; I've had it—


I lay flat on my face
feeling sorry for myself morning to night.
Forgive me.


All my longings lie open before you, O Lord;
My sighing is not hidden from you.
I want to be faithful.


But my pain is ever with me.


Don't let it crush me, God;
Please, help me;
I want to again experience
burgeoning hope for this life,
not just the next!


Come, dear Lord, come.


--adapted from Psalm 38, NIV and The Message


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Longing for Acceptance Fri, 30 Apr 2010 01:29:16 CST http://www.storyofjudson.com

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Recent conversations with friends who have very different philosophies and worldviews from me, have reminded me how, at the core of most human experience is this longing to be accepted, to be received for who we are, to be embraced in all our grit and glory.


And yet, dissimilarities in perspective can easily be so divisive, hindering relationship as we navigate the conflicting issues.   However, when we find acceptance and love from someone whose beliefs are on the opposite spectrum from us, it is striking and profound.


I have actually become most convinced of this through my friend, Jen, who is an atheist; she does not believe in God or heaven, and is far from embracing a Christian worldview. Yet, her love for me since I met her a couple years ago has been uncommon and weighty.


Though she vehemently disagrees with many of the tenets of life I hold to be true, she has proven to be an incredibly faithful friend.  She may not embrace my beliefs but she certainly embraces me—seeing into my pain, recognizing what is important to me, and supporting me in every way she possibly can.  In fact, even though my ideas regularly fly in the face of her worldview, she has remained a devoted reader of my blog and loyal supporter of Judson’s book, simply because she knows it means something to me.   


This type of acceptance is genuine love.


In fact, I would venture to say Jen has recently been one of the greatest models of Christ’s love in my life, though she herself does not believe in Jesus.


I have seen so many circumstances where significant diversity of viewpoint leads to hurt and rejection.  But, conversely, where there is sincere acceptance and love, it is incredibly powerful and transforming.


I pray for the strength of character to regularly exhibit this kind of love.

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Thankful Thursday Week #17 Thu, 29 Apr 2010 18:24:52 CST http://www.storyofjudson.com



1.  I never imagined adopting a little kitty who would wind up being such a blessing from the moment she set foot in our home.  Adorable new life moved in on Tuesday and it was as though my recent frustrations and disappointments seemed to suddenly fade away and my level of stress decreased a notch.  Our new little kitty proved to be a touch of grace beyond what I anticipated when adopting her.  Hence, we are leaning toward the name Paisley Grace (thank you to ALL who have given input for her name here and on Facebook--it has been VERY helpful!).  We are very grateful for our kitty...she is PURRecious (a shout-out to Jody for her name idea)!



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2.  I was thinking this week about the numerous people who have given freely of their time and resources to support our family and be a part of sharing Judson’s story.  What an incredible gift!  Some of the top on our list are Clark Studios who designed Judson’s entire website, Hope for Healing Hearts who offered free grief counseling for Drake and me, Robeck Design that has been volunteering as a publicist for Eyes that See, our friends Matt and Eric who have been working diligently on video promos for the book, and the list could go on and on.  I continue to be overwhelmed with gratitude for the generosity of these and others!


3.  We had the privilege of meeting the Dresher family from Wisconsin; Amy, the mom, has been following our story since Judson’s season of suffering.  She read about Jud on a message board around the time he was diagnosed with Krabbe disease and has wholeheartedly journeyed alongside us ever since.  We had a great time with them and it is an awesome blessing to meet some of the faces of people who poured out their hearts to God on our behalf! 



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4.  One of the special things about being a regular at our local Starbucks is that I have really gotten to know the employees and other frequent visitors.  We were honored this last weekend to have been invited by Kari, one of our Starbucks baristas, to attend her performance in the play Real Women Have Curves at the Long Beach Playhouse.  I am thankful for the fun evening Drake and I had together but more than that, I am grateful to be developing relationships with people who would probably otherwise be outside my community circle.


5.  Yesterday was my last day, this academic year, teaching for the women’s Bible study at our church.  It reminded me just how grateful I am for our church family and the opportunity I am regularly given to share the Word of God along with my heart, passions, and the hope that sustains me.


6.  Jessie relishes every opportunity to spend time with other kiddos.  This week it was a joy to see Jessie engage and play with Amelia, Auntie Sarah’s niece.  I love seeing her tenderness and care for children that are younger than her and I am thankful for the heart God seems to be developing in our little lady!!



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Needs A Name Wed, 28 Apr 2010 00:38:48 CST http://www.storyofjudson.com

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Jessie exclaimed in the car today, “I can’t believe this is the day that we are actually bringing our kitty home!”


Sure enough.


We adopted a little lady kitten tonight that has already stolen our hearts.  Beyond her incredibly sweet face, she has quickly taken to being with our family –nuzzling, purring, kneading her paws, and content to simply chill beside us.


Drake may be feeling a little jealous as all night I’ve been saying, “I’ve fallen in love.  I love her so much!” 


Even now as I have been typing this, she plunked herself in my lap, cuddled up, and has fallen asleep.  Does it get any more adorable than that?!



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But our precious kitten still needs a name…


So we thought that some of our cyber-friends might be willing to help us out.  We would gladly accept suggestions…simply click here to leave your ideas and read those of others.



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Multiplicity of Ways Thu, 22 Apr 2010 18:46:00 CST http://www.storyofjudson.com

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Never make a principle out of your experience; let God be as original with other people as He is with you.  -- Oswald Chambers



Much of the beauty and mystery of God is that he moves and speaks to and through people in such diverse ways.  What he uses to touch one person, or reproach another, or transform someone else varies dramatically with each individual.


And yet, how easy it is to assume that the manner in which God is working in my heart somehow translates into a general standard for how God impacts lives.  Should I not expect that his movement in hearts would be as distinct as the uniqueness of each person he has created?


I am challenged today to embrace the multiplicity of ways God can touch lives even if they don’t connect to my own experience or speak to my heart.


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Eyes that See Update



  • Eyes that See sold out of distribution within 2 days after being released, a first time for our publisher!  AWESOME!  The book is currently being restocked and is expected to be available again sometime next week.  Thank you for your patience!  Keep in mind it is always available for immediate purchase at STORYofJUDSON.com/Eyes-that-See

  • For local OC residents, there will be an Eyes that See book signing at Vanguard University next Tuesday, April 27th from 10:30 am - 12:30 pm.

  • Did you know that Eyes that See is also available in Kindle edition on Amazon?

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Thankful Thursday Week #16 Thu, 22 Apr 2010 17:19:32 CST http://www.storyofjudson.com



1.  The Lord seems to be providing some wonderful resources and possibly opening new and exciting doors to share Judson’s story.  I am thankful that when my level of energy is low, God seems to provide other people to carry us in this journey through prayer, support, and even tangibly working on our behalf.


2.  My family pooled their resources to buy me a new camera for my birthday and it arrived this week.  I am so incredibly grateful for their generosity and my new favorite toy.


3.  I have such gratitude for my friends who have continued to walk alongside me even in my on-going sorrow, my discouragement, my frustrations, and my brokenness.  This kind of love is transforming for my soul!


4.  I am thankful to my parents who have given Jessie the opportunity to take ballet/tap lessons through the city of Costa Mesa.  She had her first class this week and has been practicing first position ever since.  What a blessing it is to see our little dancer grow and develop.



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Play Therapy Mon, 19 Apr 2010 00:29:36 CST http://www.storyofjudson.com

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It’s becoming clear to me why “play therapy” can be such a powerful tool for understanding the mind and emotions of a young child.


Many times I have sheepishly noticed how the manner in which Jessie “parents” her dolls gives pretty rich insight into our parenting methods; sometimes I look on with great pride, while other times, quite frankly, there is a twinge of horror as I see her mirroring my behavior.  Certainly there are occasions when her version is skewed, but oftentimes she seems to be accurately expressing much of her own experience.


The other day I was especially interested when Jessie was playing with her Fancy Nancy doll, describing with detail, Nancy’s siblings.  Then she stopped abruptly, noting matter-of-factly to me, “Fancy Nancy’s brothers and sisters died.”


“Oh, really.  That must be…”


“They died of Krabbe disease,” she interrupted.


Recognizing a potential opportunity for Jessie to express some of her own feelings over the death of her brother I responded, “How does that make Nancy feel?”


“She feels lonely,” Jessie solemnly replied.


With the word lonely I felt like my heart was torn in two.


It is devastating to know that at just 3 ½ years old my daughter is already experiencing one of the most grievous human emotions over the lost companionship of her brother.


Yesterday we were sitting at the breakfast table together when, without warning, Jessie divulged, “I want Judson to come back.  I’ve been waiting for Jud to come back!”


It is one thing to deal with my own grief, but it is quite another to experience the harsh reality of watching Jessie gain greater understanding of all she has lost too.


Jessie grieves.


It hurts me to see her grieve.

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Circle of Influence Thu, 15 Apr 2010 23:53:00 CST http://www.storyofjudson.com

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A young, 11-year-old girl, Sarah White, contacted me a little while ago and informed me that she had discovered Judson on YouTube and was so moved by him that she wrote a paper about Jud for school.  She shared about our boy and Krabbe disease with her classmates which led some of her peers to engage Judson’s story online and become Facebook fans of Jud too.


I was really struck by the manner in which a young lady her age so beautifully used her circle of influence to make a difference, raising awareness of Krabbe disease, and touching our hearts as well.


So often as adults, I sense that the concept of “go big or go home” can actually hinder us from putting out the effort in smaller ways that can still have an impact.  I am reminded of the story by Loren Eisley of the beach covered in starfish…



One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean. 


Approaching the boy, he asked, “What are you doing?”


The youth replied, “Throwing starfish back into the ocean. 
The surf is up and the tide is going out.  If I don’t throw them back, they’ll die.”


“Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? 
You can’t make a difference!”


After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf.  Then, smiling at the man, he said…
“I made a difference for that one.”



Sarah has emphasized to me that our efforts to make a difference need not change the world, but simply by being faithful to use our passions, resources, and areas of influence, we can have an impact, even if only for a handful of starfish.



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Here is Sarah’s paper, published with permission:


Judson is a typical little boy.  He loves to play with his cars and trucks. His mother and father are Christina and Drake Levasheff.  Judson is so smart and happy.   Judson always had a smile on his face.  Although I have never met Judson or his family, his story inspires me.   Judson is diagnosed with Krabbe disease when he is 2 years old. Although Judson does not know what is coming ahead he will be strong.


After one month with Krabbe, Judson begins to lose all control of his limbs.  Even though Christina and Drake are hurting ever so badly they always have a smile for Judson.

Judson had a little sister.  Her name is Jessie.  As Jessie grows and Judson’s disease progresses Jessie will talk and Judson will try to repeat her but the disease is stopping him from talking.  He is also going blind and losing all the control of him limbs.

Judson is now 3 months into his fight, and is still very strong.  Christian and Drake are still smiling through everything for their little ball of joy!  As I was watching one of Judson’s videos I saw Judson say something that will make even the toughest person smile, Judson was playing with his mother and must have heard something when he said “Who’s there? Come in!”  Again I have never met Judson’s family but his story inspires me to be a better person everyday and never to take life and the people you love for granted because you might not be there tomorrow.

As Judson’s fight is growing, Judson becomes weaker each day.  Now Judson had gone mute, has lost his sight, and has lost most control of his limbs. I would have never thought that I would care this much about someone that I have never met.

Judson is 5 months into Krabbe and has lost everything.  As I was watching another one of Judson’s videos I saw a little red casket.  I knew that in that casket was a smart, strong, and no longer in suffering Judson Levasheff.  I now know that God has a special place in His heart for all of us and he took Judson out of suffering and pain.

Judson was loved by so many people and was taken out of this world at a very young age.  But we all know that God took him because He doesn’t want to see any of His children suffer. We all know that Judson will live in everyone’s heart for eternity.

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Thankful Thursday Week #15 Thu, 15 Apr 2010 19:13:00 CST http://www.storyofjudson.com



This week has proved to be one of numerous blessings, coming on the heels of a week that had been especially difficult.


1.  I was thankful for the opportunity to be ridiculous and silly with some of my friends last Friday, getting dressed up in costumes and being audience participants for the show “Let’s Make a Deal.”  And after the craziness of the event we enjoyed dinner on Olvera St. and some rich conversation.  It was a great girls’ day out, made possible by my folks who watched Jessie-Girl for me.  If interested, the show will air May 14 on CBS…you’re certain to catch us on camera!



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2.  So this week included my birthday…and as stated in Birthday Wish, the greatest gift was to have Judson’s book finally released.  The timing was notably a big blessing!


3.  With regard to the book, Ingram, the distributor (largest in the world) of Eyes that See, has a general number of books they stock in their warehouse for a first-time, unknown author (that’s me) that they expect will meet the initial sales for the first weeks of distribution until they can ascertain the demand for the book.  Well, we were blown away this morning to discover that Amazon has already sold out of stock in less than 72 hours.  We are incredibly blessed by the initial response and grateful to all who are sharing Judson’s story with others! 


4.  My family honored me with a birthday gathering on Saturday night for dessert at Claim Jumper.  I am thankful for Drake who organized the event and even put together a “Christina Quiz.”  It is a gift to be known and loved by family and to have their support through thick and thin!



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5.  I have been particularly blessed by my friend Jen K. this week.  From gifts, to thoughtful notes, to email messages, to kindness toward Jessie, and the list could go on and on…it is as though she is this incredible cheerleader standing beside me, rooting for me and encouraging me in meaningful, gracious, and loving ways.  I am tremendously blessed by her friendship!


6.  Thanks to the thoughtfulness of our friends, the Goodmans, Drake and I enjoyed a date in Laguna Beach on Sunday night – dinner at BJ’s and a performance at the Laguna Playhouse.  It was a definitely a treat!  And we are grateful to Danielle and Marty for watching Jess.



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7.  Tuesday is usually taco night with the Bobars, but this week, Sarah’s family invited us out to a nice, special meal.  It is a gift to feel like we have been grafted into the Hegenbart family and we are so touched by their love and support!


8.  We are thankful to all who have been posting book reviews at Amazon and Barnes & Noble for Eyes that See.  These reviews can make such a significant impact in readership and it means the world to us!!


9.  Lastly, because my parents were visiting for a few days, we were also blessed to get some time with them and Howie.  I continue to be so grateful that my parents have adopted him and that he has been able to stay in the family.



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