the intersection of life and grace

Today has been filled with a dozen or so phone calls to a doctor for me, several assorted medical folk for Tim, his school administrators, the school district, and numerous others in an attempt to get the ducks to line up and quack on cue.

The trouble is, lots of the ducks think they should be in charge of the line up schedule. Others think they should lead the quacking. While searching for an image to accompany this post, google helpfully pointed me to a Guide to Duck Alignment.

You really need to take a gander.

Ha! I quack myself up.

Had my lumbar puncture yesterday morning, now awaiting results, hoping that the results are helpful, and recovering. Spent yesterday and a chunk of today flat on my back, just like they advised to avoid the worst side effects.

This was the second time I’ve ever had this procedure, and it was the first time using the imaging technology  where they can see the positioning for the puncture on-screen.  It’s supposed to be much safer, which is good (and I could see the screen part of the time, which was cool), and I didn’t have to curl up in a tight ball, only lie on my stomach on an x-ray table.  I had an LP one other time, but I don’t recall the recovery from it (done without the fancy pictures by an ER doc) being as difficult as this time.  C’est la vie.  I’m not feeling awful, just sore and a teeny bit headachy.  Hoping that the coffee, advil and 20 oz of water I just downed will take care of that for today.

Tom took yesterday off, and was scheduled off today, so everything was pretty much taken care of between him being here and Cathie, Tim and Stacy pitching in.

In other news, we made it to an entire worship service on Sunday!  Tim did pretty well, and there was an opportunity for him to step in and handle sound duties (though the sound board wasn’t working entirely properly – it was very hot – possibly due to it’s age and possibly ‘helped’ by a lightning strike on the church which affected other electronics in the building).

My friends Larry and Jerusha are taking over leadership of The Breakfast Club outreach to neighborhood children.  They have a real love for the kids, and I hope that they will have enough help for what was and can continue as an effective way to reach into families in Hamilton Hill with the love of Jesus Christ.  I pray that the youth and adults of Christ Church will respond to revitalize this outreach entering it’s 9th ‘season’ of loving our neighbors.

I truly enjoy the Gifted for Leadership blog, and if you watch the “interesting reads” section in the right-side column of this blog you’ll frequently see that I’ve shared items from there. It’s wonderful and insightful material for all Christian leaders and the applicability of this intended “by women, for women” wisdom is unaffected by the gender of the Christian reader. It’s just good.

Yesterday, that blog posted a piece on the results of Denise George’s research purposed “To help today’s pastor better understand women in the congregation so the pastor can better minister to them.” Compiled and published as What Women Wish Pastors Knew, the research verifies several important points about the majority gender in the pews.

Quoting:

1. Women are tired. Almost every returned survey included words like “exhausted,” “stressed-out,” “too much to do,” and “worn out.” We’re trying to juggle too many jobs at once. Author John Eldredge writes in Wild at Heart: “Walk into most churches in America, have a look around, and ask yourself this question: ‘What is a Christian woman?’ Don’t listen to what is said, look at what you find there. There is no doubt about it. You’d have to admit, a Christian woman is tired.”

2. Women are hurting. I often received eight to ten pages of hand-written letters from women describing personal painful situations. They mentioned infertility, a child’s suicide, an unmarried pregnant teenaged daughter, “post-abortion syndrome,” a parent with Alzheimer’s Disease, and childhood sexual abuse. They described deep depression, thoughts of suicide, spouse abuse in their marriages, husbands with “dirty little secrets” and secret addictions, the pain of divorce or becoming a widow, intense loneliness, etc. They begged for biblically-based counseling—with another female—sponsored by the church. They also yearned for a church-supported network of women to “tend and befriend” them.

3. Women want to grow spiritually. The majority of women told me they craved church-sponsored Bible study. They complained about “spiritual fluff” in churches today, and yearned for “spiritual meat.” I discovered a deep hunger for theology among women today.

4. Women want to raise godly children. Moms admitted they were “swimming upstream” trying to rear up Christian children in today’s secular society. Many were single moms who needed practical help from the church. Married moms complained about “spiritually-inept” husbands who refused to take spiritual leadership in the home. They asked for the church’s help in teaching their husbands how to be spiritual leaders, good husbands, and loving fathers.

5. Women often feel like “second-class citizens” in church. I heard that expression a lot from singles, divorcees, widows, and also from the young and the elderly who felt they had no place in the church. Women want to use their God-given spiritual gifts to serve God and others through the church. Many, however, are not allowed to serve in what they called traditional “male-dominated positions.” (I found it interesting, however, that those women wanting other women in church leadership roles was equally balanced by those women who didn’t want other women in church leadership roles.)

Women also told me they wanted respect from male church leaders, to serve (in harmony) with men on church committees, to have their insights and opinions valued, to be empowered, equipped, and encouraged by the church to use their unique God-given gifts for God’s Kingdom, and many other things.

I don’t think that these results, however, are a cry for “women’s ministry.” I believe they are a cry for safe, healing community

• where individual brokenness is recognized and restoration really possible (and not forced under by shame, ignorance or judgement);
• where families are ministered to in whatever form they take and with whatever physical, emotional and spiritual need they bring (and not pushed aside if not the idyllic-but-non-existent “normal” Christian family);
• where people of all ages are led to discover and put to use their giftedness through solid, biblical teaching in a variety of formats creatively designed (not stereotypical or traditional programmatic roles for which they are unsuited);
• where saying yes to service is life-giving for everyone (not a life-sentence);
• and where anyone can see that people truly, obviously and willingly belong to one another in the Body of believers (and people don’t fall through the cracks when life’s circumstances press in).

I’m fairly certain men, women and children would want to be part of something like that. What do you think?

We returned from the consult in Rochester yesterday, a round trip of 461 miles, and took some time to rest, process what we learned, and begin some research to confirm the doctor’s conclusions and advice.

The two most helpful parts of the visit were 1. this doctor’s thoroughness and complete explanations 2. the fact that he gave us more than a label, he gave Tim a course of action which he strongly believes will help. This, combined with Tim’s statement to me that he believed this doctor and thought that he and the two others who have been his strongest medical advocates were doing a good job for him, is a major component to a good outcome, and potentially a full recovery.

This doctor, in comparison to the manner of treatment from the several previous physicians whose demeanor left Tim angry, frustrated, discouraged and hopeless, was a caring professional who clearly understood the situation and could express his conclusions in a way that gave me confidence. Initially, Tim was angry, but after I was able to explain how what the doctor said was not what he initially understood, his response has been more positive than he’s been in some time.

The nagging question of “why” these abnormal movements began — the one thing he really wants to know — may not ever be answered for Tim. We know that he has no clinical evidence (test results) that point to any underlying illness. We know that the year before they started included a painful and tough to treat infection, a serious allergic reaction to a medication for that infection, a series of more mundane infections, a vaccine for meningitis, and finally the diagnosis of essential tremor in his right arm. The arrival of the tremor, which the new doctor believes is a distinct issue, precipitated a summer of testing and medication trials with lots of unpleasant side effects, rounded out a period of considerable physical stress, which the new doctor explained to us can most certainly cause the kind of chemical/electrical “short circuit” that’s behind Tim’s symptoms.  That’s not even to mention all the academic complications of missing school/making up work for the better part of the winter-spring semester, and all the “normal stuff” a teenagers life holds (Tim had a new driver’s license and a new job at that time as well).

So, to aid his body in re-establishing that circuit and allow him to regain control of his muscles, we will search for a physical therapist to help Tim learn strategies to master these life-altering, abnormal movements. We will continue with the medications that have helped him thus far. We will help him to get back his social and academic life. We will continue to support and pray for our son, brother, friend, and provide whatever support he needs to live into his God-given potential.

Back on July 8, a prayer was answered, and an appointment with a highly recommended specialist was granted. To refresh:

Health-wise, Tim is about the same. His symptoms vary a bit, but over time are consistently present daily in some manner of abnormal movement. Of course, the frustration of not being able to find a doctor that will pursue this to a diagnosis continues. Four neurologists, a rheumatologist, two psychiatrists, a team of hospital pediatricians, and our determined pediatrician… plus an assortment of radiologists, and ER docs. The psychiatrists say, “this isn’t a conversion disorder, keep looking for a neurological origin” while the neurological (and rheumatological) folk we’ve seen thus far say “this isn’t neurological, it’s psychiatric.” Yeah, ok… that’s super-helpful. One of the neurologists honestly said “I don’t know, I’ve never seen anything like this before.” I wanted to hug him.

The psychiatrist has been very kind and supportive, and we’ll keep taking Tim to see him while we’re tilting at the diagnosis windmill. After that, we’ll see if it’s still worthwhile. He did suggest a particular child neurology specialist at Strong Memorial Hospital, whose receptionist refused to schedule Tim because he’s nearing his 18th birthday. When another respected doctor also suggested the same specialist, and I discovered that our pediatrician had already sent Tim’s test results and a summary letter to his office, I wrote a letter hoping to get past the ‘law’ and into the grace of the situation.

Yesterday’s mail brought a reply – an appointment for August 21 with the highly recommended specialist in Rochester! That is completely an answered prayer!

That appointment date is finally here, one we’ve been waiting for, one we’ve been trying not to pin to many hopes on, but one where we do hope to be heard and maybe even to get some answers.

Tim is doing fairly well as he adjusts to the latest tweak in his medication, but to have a name for what “it” is and to know what to do about it. He’s hoping to be able to do what seniors in high school do, and we want that for him as well. Our hope for him, since the moment we knew he existed, is that he know and honor God in his life and live into the purpose for which he was created. So, we continue to search for the path to health and healing as God opens doors.

A number of my online friends have been taking these tests and posting the results, so I thought I’d join in the fun.

These results are pretty much the same as any other time I’ve taken them. I’m usually very close on the feeling/thinking category and this time it just tipped to the thinking side. And yes, I really am an introvert! People exhaust me, but I love them. I think that’s partly why I enjoy online community so much, I’d never thought about that.

Music has never come up so high in the multiple intelligences test for me before, it’s generally visual/spatial in that spot. But as I looked anew on the descriptions for all the various areas, and I thought these reflected me fairly accurately.

Yes!  I giggled at first, but you know church people and their amazing ability to produce large quantities of their favorite recipes and yesterday was no exception.  About 80 people attended the day-long conference centered on Bishop Love’s emphasis on getting back to basics and studying the scriptures as a whole, followed by sampling quite a few tasty chili creations (and make-your-own sundaes).

I was invited to present a 2-hour session on tailoring Bible studies to youth, and the afternoon went very well.  I had a mix of clergy and laity, and even two teenagers, representing several congregations desiring to start youth Bible studies or incorporate them into existing Sunday school programming.  It was great fun spending time with these folks and giving them a way to craft low-tech, memorable and interactive studies for their youth.

My favorite part of the workshop was having the time to cover the foundational stuff of preparation, and to take time to practice doing it.  It was great that every one of them left our time together with a new Bible study outline they’d worked in groups to create, plus got to take a look at some prepared curriculum sources in print and on DVD, and knew what it took to tweak it to their own context.

I had a great time with them, and connecting with some of my former co-workers, some folks from my home church and around the Diocese of Albany I hadn’t seen in some time, and meet some new people who share my love and desire to connect young people with the Word.

Romeo Church, where my friend and business partner is a pastor, is doing something remarkable this week. The people of the church have gone to the fair. Why is it remarkable? They are doing something near and dear to my (and I’d strongly contend to Jesus’) heart – they are taking church to people! They have something to tell about and want to share life with their community.

Read about some of what they’re learning, it’s cool insight into the whys of getting out of the pew!

It’s muggy today and the ragweed is blooming, which means I’m uncomfortable. I’ll survive the semi-stuffy nose and the stickiness no problem, I just thought I’d share.

One of the joys of this part of the summer is baseball’s pennant race. Today marks the beginning of the final quarter of the season, and it looks like it will indeed be a race to the league championships in both the NL where my beloved Mets have led since May 16 with the Phillies and the Braves never very far behind, and the AL where Boston’s once commanding lead is being whittled away by the Yankees. It’s been fun to watch more games this year than I think I ever have been able to, and Tim and Cathie have really caught the baseball bug. It makes this sports-loving mom’s heart glad to hear them talk about baseball with knowledge, to discuss the merits of one pitcher over another, shout over a great play and critique managerial decisions with valid options.

We’re also sorting out family logistics for the next couple of weeks as we prepare for Tim and I to head to his long-awaited appointment with the neurologist in Rochester early next week. Cathie is positively gleeful that Tom’s mother is coming to stay with her while Tim and I are gone and Tom is here in town working. Along with being here for our girl, Nana will step into the “mom’s taxi” role, taking Cathie to her sophomore orientation and to swim team practices on Monday and Tuesday. I bet there will be at least one shopping trip fit in there too, because that is one thing that Nana and Cathie absolutely share a love for.

Another bit of fun (no sarcasm at all!) is coming up for me on Saturday as I’ve been invited to teach a 2-hour training seminar on leading Bible studies for youth to Sunday school teachers and youth leaders. I’m really enjoying the preparation for it, planning to spend the first part of the time going over tools for preparation and talking about lesson sources and the second part engaging in a couple of different ways to “do” interactive Bible study.

An update on my tingly hands? The several blood tests and the neural pathways studies were just fine and offered nothing that would help explain the inflammation around my cervical spine. Hmph. I now get to experience my second lumbar puncture so we can determine if there is some infection at work (the first was a couple of years ago for another mysterious illness… yes, I’m just that special). That is scheduled for 8/27 (it could have been sooner, but I need to be able to drive the +/- 5 hours to Rochester and back for Tim’s appointment).  So, staying tuned… still.

This turned out to be quite the random post!

Hurry up and wait has been a recurring theme for us for the past year or so, and I’ve begun to feel that ‘wait’ is a curse to us, as it causes a range of other stresses like pain, suffering, doubt, struggle, inconsistency, even separation and loneliness. Thus far, it has been difficult to identify a good thing brought about by this kind of waiting – not that there isn’t any good, it has just been elusive as yet.

Waiting is a built-in part of the medical system, and though I know we have quicker access to tests and specialists than those in places with socialized medicine in place, it takes so long to get an appointment that will last only a short time and may not produce any answers.  The time we’ve spent waiting to get normal back, the time we’ve spent waiting for specialists, for test results, for healing, for answered prayers,  have mostly produced more opportunities to wait.

Of all the difficulties, it is the separation and loneliness produced by the length of time we’ve been dealing with these various trials that are the hardest of all.   I know that there are people praying everywhere, it’s not that we are forgotten in that important sense.  It’s even hard to find the right words to express what has happened, but one thing I’m sure about is that God has not called us to separation and loneliness in the midst of our family’s suffering.