Dear Judson,
I have so much in my heart to say to you, Son-so much that you already know. That I love you tons and tons. That I’m so very proud of you. That I miss you.
You are written indelibly on my soul. Much of me will not endure beyond this life, but my love for you will.
With all of my heart,
Daddy
Tomorrow marks a year from the Sunday we dedicated Judson and Jessie at our church. We had planned the occasion weeks before the onset of Jud’s Krabbe, but the disease was well underway when we stood before the members of Grace that pivotal Sunday morning. Though we did not know what was happening in Judson’s body, we knew there was neurological damage.
Drake and I had only been at our church for less than a year (after moving to Costa Mesa); we were still trying to find our niche and knew only a handful of people. However, we had firmly decided this was the community in which we wanted to dedicate and raise our kids.
As we stood before the church body professing our commitment to honor the Lord in our parenting of Jud and Jessie, the community also committed to supporting us in our endeavors to faithfully raise our kids…
Yet, we had no idea that our gift of raising Jud would end less than five months later.
In those five subsequent months of suffering, and now in our tremendous grief, we have received more support than imaginable. Our church family took their commitment seriously, and we could not have walked this path without them. In the most wretched of circumstances, they helped us love and care for our boy to completion.
Whereas a year ago we did not know many of the faces at our church, we look around the room now and see true family-partners in our joy and suffering. We may have dedicated our kids last year, but the people of Grace have certainly shown their dedication to us.
We would trade anything to have our boy back, but as Jud’s story unfolded, one of our greatest gifts has been GFC. We are so grateful!
I vividly remember a phone conversation I had with my friend Tracy precisely one year ago. At the time, Drake and I had to wait a full weekend before we would be able to meet with the neurologist to discuss the results of Jud’s first MRI, but we also knew that our boy did not have a brain tumor.
Tracy asked me how I was doing with the waiting and all the uncertainty.
My response has haunted me ever since…
“I feel so helpless and powerless having to wait, and I greatly fear what this could mean for Jud long-term, but at least I will have my boy! I don’t think this is threatening his life. At least I will have my boy!”
I recall saying those words to her and thinking to myself, “What could be worse than cancer? If Jud doesn’t have a brain tumor, then surely his life is not in jeopardy! But what if I am wrong? Are there other diseases that can kill him? Not likely. At least I will have my boy!”
As I discussed my feelings with Tracy, I remember consciously trying to find the positive side in the midst of being petrified that Jud was going to be disabled for the rest of his life.
This is one of those moments when hindsight feels torturous.
I no longer have my boy. I thought I would still have my boy. I no longer have my boy!
Oh, how it hurts!
Singing used to flow easily and sometimes unconsciously from my lips whenever I was listening to a song that had familiar lyrics or even in a time of community worship. However, my journey over the last year has made me much more mindful of the words that glide off my tongue in song. I want each chorus sung out of a genuine understanding of the words, while truly expressing the convictions of my soul.
Old, familiar songs now stop me cold with the sentiments expressed therein.
And I ask myself…Do I really think this? Do I actually live out of this truth? Do these words resonate with the true longings of my heart? If I sincerely believe these words, what will it cost me?
One such song that used to regularly and mindlessly stream from my mouth is on a Margaret Becker album from 1999. I happened to randomly put this old CD in my car stereo the other day. As I listened to the lyrics of “All That’s Left,” I found myself marveling that I used to effortlessly sing the words to this song. Now they carry such significant weight and power.
I’m not so strong, not so brave
Tripping along this life unpaved
And losing myself all the way
Yeah this is tough, yet still a gift
To be held here in Your grip
And so I go now
Through Your changes
And I’ll break down
If that is what it takes
I’ll be weak if it shows Your strength
And I’ll be glad at the end of all the change
If You are all that’s left in me
If You are all that’s left in me
With Your grace
Make me less
Fill me with Your brokenness
‘til I raise these hands
To Your lovely face
Ah, these changes
In the chaos You’ve ordained
Changes ‘til I am fully claimed
Changes ‘til only You remain
This song talks about being stripped of EVERYTHING until all that remains in me is Jesus Christ. It depicts fellowship with the brokenness of our Lord and describes being weak so God can be made strong.
I used to sing these words??!!???
Did I think about them and what it might cost me?!!!??!
Now I do.
Since rediscovering this song in the last week, I have found it difficult to sing. But yesterday, I was moved to belt it out with greater reverence, greater intentionality, greater awe, and hopefully greater devotion than ever before.
Though music may no longer flow easily from my lips, when I do sing, it surges out of the depths of my soul.
Dear family and friends,
Today, June 13th, has been etched in our minds as the date our affliction over Judson’s journey with Krabbe began.
On that fateful Wednesday morning, we met with Judson’s pediatrician and the whirlwind picked up from there. I was told to take Judson immediately to the ophthalmologist, encouraged not to even stop for lunch, and that an emergency MRI was being ordered. At the time, the doctors were functioning under the assumption that Judson had a brain tumor; after the MRI (which occurred the following morning), Jud was going to be rushed to Los Angeles for brain surgery if any abnormal growth was visible.
Though they did not discover any tumors, they saw damage in the white matter of Judson’s brain…everything began to spiral downward from there.
I am realizing (as expressed in yesterday’s blog), that anniversaries are particularly hard because the memories from the difficult days flood my mind. They replay over and over. In turn, my new emotions of grief and sorrow are forced to mix with the emotions that were present on the day being remembered. It is a double whammy! And the challenging remembrances are also viewed through a lens of hindsight that gives a sobering reality to what had occurred previously.
This day last year was also the day we sent an email to a handful of family and friends informing them of our sudden concern for Jud. Something that stands out to us is the manner by which God used that small group of people to mobilize such incredible love, support, tangible assistance, and prayers for us. Beginning with those who received the first email, our story reached thousands of people, and we have had the amazing gift of knowing we have been upheld by SO many-family, friends, and strangers alike! It has enabled us to endure.
It is a sorrowful anniversary day, and we are baffled at what has occurred in the last year, but we also thank God for the way He has upheld our family since last June. We have much to be grateful for, including the sweet little man who graced our lives and left his beautiful mark on us and this world.
Even though we have been through the valley of the shadow of death this year, evil will not triumph, for the Lord has unceasingly been with us; His rod and His staff, may they continue to be a constant comfort. Amen. (Psalm 23:4)
Much love and gratitude,
Christina (on behalf of Drake too)
P.S. Our hearts are also with “Kenji” Harris (www.caringbridge.org/visit/lekendricharris) who is one of the small handful of children in the US with late-onset Krabbe. As I write this, he is fighting for his life! Please pray for his family too!
In our journey of grief and sorrow, we have regularly been “warned” that anniversaries can be far more difficult than the average day of loss. I have frequently wondered what makes these days more challenging, seeing as the loss itself remains unchanged. Why would these particular days be harder?
I am beginning to understand.
What has been happening as an anniversary approaches, is the memories from that day flood my mind. They replay over and over. In turn, my new emotions of grief and sorrow are forced to mix with the emotions that were present on the day being remembered. It is a double whammy! And I view the anniversary with a profoundly new understanding from the hindsight I now walk in each day.
Tomorrow, Friday, June 13th, is the anniversary of the date in time that marks, in our minds the start of Judson’s journey as a boy plagued by wretched disease. It begins the season of multiple disabling memories.
Oh God, grant us comfort!
A year ago today marks my first day of skyrocketing fear for Judson’s well-being (see Altered Forever).
Strangely, at the time, I did not fear for Judson’s life-that thought didn’t really even cross my mind; it was devastating enough just to imagine Jud might have a long-term disability.
Here is my journal entry from June 11, 2007, exactly one year ago:
Dear Father,
I am so concerned about Jud…he is almost to the point where he can hardly walk and there might be something wrong with his eyesight. I don’t want my mind to go crazy, but it is hard to keep from worrying about potentially chronic ailments. It breaks my heart to think of him dealing with a disability all his life. I can hardly bear it!!
Please, please, please God heal him. Please enable him to be even more physically adept after going through this, whatever it may be.
In the meantime, please grant me patience and wisdom. I ask You to show me how I can best meet Jud’s needs right now.
Jesus, will you also expand my faith and love for you during this time?
My recollection of this day brings an intense ache, particularly as I now know what was coming around the bend. I have some very specific memories, but the overarching feeling on June 11th last year was one of panic.
Panic is, in and of itself awful, but it is beyond excruciating when that which is feared turns out to be worse than you even imagined!
We recently popped a new music CD in the car for Jessie. It is a bunch of old-fashioned, poorly recorded, gospel music for kids…What can I say?!!!? It was really cheap and Jessie’s not too picky!
Our little “buggy” has a couple favorites on the album, but I found it curious that the song she keeps requesting over and over again is “Heaven is a Place for Kids:”