It’s been so long since I’ve been able to compose a few thoughts and have time to sit at the computer and put them down. I’m sorry, I know there are many who surf by regularly and see nothing new. It’s not that I haven’t been at the computer, I have. It’s that lethal combination of preoccupation and distraction, with a healthy side of life pressing in on all sides.
Tim and I missed church again today, which makes me sad because it was “commissioning day” for Cathie as she gets ready to head out on her mission trip to Bolivia next Saturday (7/14). I did get her there while Tim was asleep, he had a very difficult night with a number of back-to-back, frightening, seizure-like episodes. From church, she’ll go to her friend Rebecca’s house until it’s time for a youth group pool party. So, she’ll have a great, and busy day.
On the other hand, Tim and I will be home… again. We sometimes get pretty severe cabin fever, more often that makes us silly rather than grumpy, but both are understandable with the circumstances. The plus side is, we get to watch a lot of baseball games together! So… what are the circumstances since the last post in May?
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!
Somewhere in the midst of all that – actually, pretty shortly after my last post – I resigned my position as the Director of Youth Ministries at Christ the King Center and the Diocese of Albany in order to be more available to Tim and my family as we help each other through these days. Chris Copeland, my predecessor and the director of Beaver Cross Camp, has been re-gifted with the youth ministries responsibilities.
So, for the first time in a LOT of years, I’m not engaged in direct youth ministry. It’s pretty darn strange, I have to tell you, to have changed ministry positions from Christ Church for 7 years, to CtK for 1, to full-time mom, all in just about 15 months. Head spinning… heart adjusting to “being on the vocational ministry bench” – so not a place I’m used to! However, it’s where I’m supposed to be, and I’ve been at peace about it 99.9999999~% of the time. It is hard to give up the new relationships I was forming, the new vision for programming, and the seeds planted… I know that isn’t all gone, that God will surely provide… I’m just missing being a part of what He’s doing in that section of the vineyard.
Oh, and please don’t tell me motherhood is youth ministry, anymore… it hurts more than it helps. While they surely overlap in some ways, but they are not the same thing and making them equal is patronizing and demeans the effort and education – not to mention the calling of God – involved in each distinct ministry.
Tom is preparing to run the Adirondack half-marathon in September, as a member of the Leukemia & Lymphoma Society’s Team in Training. Training for that, combined with his work and reserves duty keeps him pretty busy.
Sooo… there you go. Thanks for checking in here, thanks for praying with us for Tim’s healing, and for each of us as we go through these days. God provides, your prayers sustain and encourage us. We value you more than words can describe.