the intersection of life and grace

I am eager for the day I can post here and say that Tim is all better… that there are no more unexplainable episodes of tremors, or seizures, or whatever we’re supposed to call them. Today is not that day, but I pray it comes soon.

Doctor after doctor is unable to give us any real answer about what is happening. They recognize it is happening, and some honestly say they don’t know what it is, and some can say what they know it isn’t. But none have been able to say “eureka” and help us choose a course of treatment that will help. Some have done harm with their guessing, or with their presumptions.

Last week we saw two new doctors. The first, a third neurologist, was thorough in his examination, listened well, watched the video we’d taken of the episodes (even inviting 2 colleagues to review it as well), and was remarkably kind and honest in saying he didn’t know what was going on.

The second, a rheumatologist, reviewed Tim’s file of test results, asked him some questions, and told us what we already knew about some specific autoimmune disorders – that Tim isn’t suffering from them. His bloodwork has never indicated that he had the ailments she mentioned, but when she observed his very natural disappointment at yet another “no solution” response, she lectured us about how glad we should be to have ruled out some very bad illnesses. Then, she turned to me and asked in total seriousness why I was withholding “the one treatment that could help my son.” I was dumbfounded, and she took my pause as the opportunity to go on, telling me that we’ve had a lot of tests, seen a lot of doctors, and that our only option was to conclude that Tim needs psychiatric treatment to resolve his tremors.

Nevermind that he’s been evaluated in person by a child psychiatrist, and his case has been reviewed by another via presentation by his primary doctor. Neither of their opinions matched the other doctors with out answers’ opinion. In fact, the pyschiatrists both said, it is far more rare for a psychogenic disorder to be present and last this long than it is for this to be a number of rare diseases or even some rare genetic disorders.

The visit with the rheumatologist was crushing for Tim. It made his primary doctor frustrated, and she is pursuing our taking him to Boston for evaluation. He’s now quite wary of further doctor visits, understandably so. But he wants to know the source of his suffering, he wants the pain to end. He wants to do what 17 year olds do – search for a college, be with his friends, have a full life like he had until a year ago.

We work hard not to give in to discouragement – though there is much about which to feel discouraged – and to keep in mind that God knows what’s going on in the most minute detail, and remember that he is in control. We do trust him completely, though we’re not ‘happy’ to be suffering in so many ways. His suffering is not light, walking with him in it is not easy for me or the rest of our family.

We continue to pray for Tim’s complete healing, for God’s direction as to his care and treatment. I pray that God will guard Tim’s heart, to keep pulling him closer, to give him eyes to see what God is doing.

This image is a snap shot of the ever-changing world in which teenagers live and move. IMO, there are some territories (like myspace) that are shrinking, while others (like facebook) are seeing some increase in population. And I think AIM should be bigger. I love the names on the compass points!

HT T19.

There are so many reasons for me to sigh deeply about the Episcopal Church, but the lastest reason is the report that former New Jersey Governor James McGreevey aspires to the priesthood and has entered the ordination discernment process in the Diocese of New York. It is being widely reported that he has applied to General Theological Seminary. One such report from the New York Times can be found here.

This is not about his being gay. This is about so many more unsettling things, including his on-going divorce proceedings following his very public declaration a year ago of extra-marital affairs and unethical behavior in the conduct of his duties as governor. Also, his having been received (the process of joining the Episcopal Church for those baptised and confirmed in another sacramental Christian tradition) only last week. Do we really need another “poster child” for how “progressive” and “accepting” we are? Really?

I also need to point out, the discernment process for ordination is not intended to be a publicity-oriented time. At the outset, it is deeply personal and introspective, and involves one’s own parish priest and leadership, and perhaps a small group of others providing spiritual direction. This is so unusual in so many ways.

I’m also sighing because I’m tired of having to explain to other Christians “what kind” of Episcopalian I am, or hoping to avoid mentioning my denomination. I’m weary of the Episcopal “schizophrenia” – how much longer can such different understandings of the church, of the calling of the Gospel, exist under the same roof?

It just makes me sad.

Update: I’m not alone! Stand Firm drew my attention to the following comment by Mark Krikorian, here:

The head of the Episcopal Church, Bishop Katharine Jefferts Schori, is complaining about Nigerian Anglican bishops coming to Virginia this weekend to formally install the head of the conservative breakaway denomination in this country. Here’s what she said: “Such action would violate the ancient customs of the church.”

I kid you not. The female head of a church with a practicing homosexual bishop planning to “marry” his lover, a church that could accept into seminary the adulterous homosexual governor of New Jersey, a church that embraces splitting open babies’ skulls and vacuuming their brains out, is complaining about violating ancient customs? Wow.

Exactly. Sigh.

I can not believe the relief Tim gets from steroids. Within 24 hours of beginning or ending a 6-day course of solumedrol his condition changes dramatically. Tuesday was one of the worst days he’s had for the spasms that cause his body to stiffen straight or curl up suddenly, then weaken and cause him to fall in what resembles a faint (though he never loses consciousness). Wednesday, with the steroids begun, was one of the better recent days. Still some of these spasms, but dramatically fewer, and the other symptoms (especially tremoring) were less as well. Sadly, the dose decreases daily – which is for his protection from the side effects long term steroids at high doses can cause – and the symptoms will typically begin to increase again soon.

Tonight we have a consult appointment with his primary doctor, who has been a God-send in her diligent search for consults and information to help. We also get to meet Penny and Calley in person for the first time (Calley suffers scarily similar symptoms to Tim’s, is about the same age, but has “only” been sick since February of this year). They are also consulting with Dr. B tonight. We’re going to be talking about a plan of consults and treatments. I know that Tim’s will include a new local neurologist on 5/9 and a rheumatomogist on 5/10 at Connecticut Children’s Medical Center in Hartford. We’ve also been exploring the possibility of the Mayo Clinic, but aren’t yet sure what will happen with that.

In other logistics, Tim finally (weeks later!) has tutors for all his school subjects. The tutor he’s had, Ms. J, has been great but not confident in helping him with calculus and physics (she’s a social studies teacher). The school district finally simply hired his own calculus and physics teachers. The next hurdle is discerning when and whether he can/should return to the classroom setting.

And today’s the day Tom catches up to me chronologically (sort of), so we’ll be squeezing in some sort of dinner and cake between Tim’s math tutor and the doctor’s visit. The kids already have gifts for him, and I haven’t gotten shopping yet. Hopefully this weekend… we’ll see how it goes (that’s my new answer for everything).

Keep praying for a breakthrough for Tim, for our family. Pray also that we’ll keep remembering that God’s grace is always suffcient, that even though these days are incredibly difficult, we aren’t lacking anything. It’s where life and grace really intersect, isn’t it?