I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis. Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."
Friday, March 27, 2015
I Surrender All . . . . . . . .
We recently sang the hymn "I Surrender All" during a worship service, and those words took on a deeper meaning for me than they have in the past---really resonated this time more than others, and maybe in a different way than usual. These past few months, as we have begun to look to the summer, I've come to the place where I've truly HAD to surrender all my tendencies to make plans and get all my "ducks in a row." And it seems like the more I felt that I was being successful in being flexible and trusting that "God's got this!" and that He'll work out all the details I can't control (as He's been faithful to do in the past), more and more variables continued to get dumped into the bucket of "stuff" in regards to making plans, organizing our calender, and keeping all of those spinning plates balanced and rotating.
This coming summer, Anna's last summer before she graduates from high school, she will have jaw reconstruction surgery (necessary because of the significant damage caused by arthritis). We've been talking about this for awhile (probably over 18 months), but now it's getting closer---like REALLY close. We don't yet have a date for surgery, but we have an appointment with the team of doctors from the Lancaster Cleft Palate Clinic to discuss Anna's orthodontic progress, her readiness for surgery, and hopefully get a specific date. We're hoping for June, after school is out. (The orthodontist and director of the clinic thinks that June is a good target time--but Anna also needs confirmation from the plastic surgeon who will be doing the surgery. His staff will schedule the surgery date.)
We were very glad to make that "team" appointment for the first full week of April, even though it meant adding one more appointment to the three already scheduled for Anna that month. And then I checked the mailbox in late February, finding a summons from the District Court in Harrisburg, advising me that I would required to be available for jury service for the entire month of April! Now that's a game-changer! Nothing like making an appointment to get a lot of answers to some really important questions, and then being told you probably will not be able to go! I just found out this evening, though, that my jury service has been deferred until July! (Thanks to a great letter from Anna's pediatric rheumatologist to the court.)
More details continue to be clarified, thankfully. We were thinking our insurance coverage may change (and we run on a fiscal year with that---July 1 - June 30)---and it is (we just found that out today), but in my view, it's a GOOD change---going back to a carrier which we've had before. I liked them, more than the company we are currently working with. But that will mean a lot of scrambling and making arrangements for coverage for Remicade infusions and post-op appointments. But at least we'll still have insurance, and from a reputable company.
There are still some things we just don't know, and we won't know until after the surgery. Like---will Anna be able to play the bassoon again? Definitely not for several weeks after surgery. And then it's probably going to take some hard work to get her mouth muscles back into shape to play. We'll just have to wait and see. God has blessed her with a talent there, but I have no clue what the future will hold with that. It's one area where we need to say, "I surrender! I just don't know! . . . " And continue to trust and to know that our future is in His hands, and we follow Jesus step by step to see where He leads us (bassoon or no bassoon).
Another unknown---I know (because the plastic surgeon told me this 18 months ago), that Anna will need to be off Methotrexate for awhile, as she heals from surgery. But what about the Remicade? (I'm sure they'll tell us next month.) And when she goes off the Methotrexate (if not also the Remicade) temporarily, will her uveitis flare? I just don't know.
For a person who likes to plan and get all puzzle pieces into place so I can see the big picture, all of these "unknowns" could be a little unsettling. But Jesus continues to provide us with peace in the unknowns. We've been doing a lot of "laying it down and letting it go" these past few months, and we're watching as the answers fall into place, one by one. I continue to LOVE the group Casting Crowns, and their song which talks about surrender (I've probably quoted this before!):
And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down, and let it go
Read more at http://www.songlyrics.com/casting-crowns/just-be-held-lyrics/#8dVSJqQLcT7IzIHX.99
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