Catching up?

It seems like getting caught up is something I really, really want, and something I’ll never, ever, ever get. Ironic that Brad+ was preaching on surrendering our “to do” lists to God’s when Tim’s tremors took over every ounce of my attention.

A good many people are already aware that our son, Tim, has been suffering since June with an unexplained tremor of his right arm. So many people have been praying for his healing since that night the tremor began; so many have offered posts and cards and in-person offerings of encouragement. Please know that we believe in healing, and we know that Jesus Christ is the ultimate source of all healing.

After pursuing all the medical options – multiple doctors/specialists and diagnostic tests for any and everything that can cause a tremor – no difinitive cause was determined. Several trial treatments provided intolerable side effects, and Tim chose to “wait it out” for the doctor’s prediction that the tremor “would stop as suddenly as it started” to materialize. That day has yet to come.

Fast forward (and it really seemed to go quickly) to October 29, in the midst of that sermon I mentioned above. Tim came to sit by me to say that he was having uncomfortable muscle spasms in the middle of his back. He stayed by me, looking distressed, and within just a few minutes the spasms engulfed his body. He rocked forward and back, his arms and legs shook, his neck took control of his head’s movement. He was frightened, I was already praying and had my hand in his whispering to him that he wasn’t alone. He was conscious throughout. Soon others came to pray, and the agenda of that sermon, of that particular liturgy, was stopped to minister to Tim. God’s people prayed fervently, and continue to. We are so grateful.

In the weeks since, as the tremors continued to occur multiple times daily in varying degrees of intensity and duration, another flurry of doctor visits and tests. Thanks to the advocacy of our amazing pediatrician, Tim is being freed from some unnecessary anti-depressants and beginning a new course of treatment. After reviewing Tim’s complete history (13 of his 17 years in her care), our doctor surmises that he’s having an immunological/neurological reaction to a recent-past viral illness (or series of illnesses). This is exceedingly rare, and Tim’s would be an atypical presentation of the disorder known as Sydenham’s chorea. Which is why we’re not calling it “the” diagnosis just yet. The trial treatment will continue for a few weeks, and progress (or lack thereof) will determine the next steps.

In the meantime, what was “normal” life here – my personal and professional “to do’s” – is on hold as I focus entirely on my ministry as mom. Tim can’t be alone, he’s having trouble concentrating on much of anything, and he needs to be helped to adjust to life as it is now. There have been heart-breaking moments – the loss of the freedom he’d just gained with his driver’s license, resigning his job at the mall, suspending private music lessons he’d begun to intensely prepare for college auditions. I’ve had the painful privilege of grieving these with him, and hoping with him that they are temporary.

The Lord knows if we’ve found the right problem and treatment; we do not yet know those facts. The Lord knows already what our “new normal” life requires of each of the members of our family; we do not yet know those facts. Our friend Torre tells a story of walking a Liberian jungle path with a lamp. If the lamp was held high, it cast a lot of light and created many frightening shadows. If the lamp was held at one’s side, it cast enough light for the next step and warded off the overwhelming (and falsely frightening) shadows of what’s to come. Please pray with us as we take one moment, one step forward at a time, and that we keep the lamp at our side as we walk this path.

No Responses to “Catching up?”

  1. Anonymous
    November 23, 2006 at 10:29 am #

    Please know I am praying for you guys and Tim.

  2. Simpson Family
    February 16, 2007 at 3:48 pm #

    Hi. I’m Sharon Simpson, a pastor’s wife (evangelical church) living near Vancouver, BC. My 13 year old son, Matt, has Sydenham’s Chorea. I’m looking for someone with whom I can talk to learn more. Our neurologist, family doctor, cardiologist and psychiatrist seem at a roadblock..

    Are you interested in talking about it with me? I’ll send you the link to our family blog as well.

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