Friday, July 03, 2009
Thursday afternoon was a very long one! Anna had an appointment with the ophthalmologist, and I knew when we made the appointment (four weeks ago)that they were squeezing her into an already full and tight schedule. The appointment was for 4:20 p.m. This week was our church's Vacation Bible School, and Anna was the "craft coordinator (she's only 11, but she's mature for her age, my friend (the VBS coordinator) asked if Anna would do this, and Anna didn't hesitate to say "YES!," and took this responsibility VERY seriously. So Anna needed to be at the church at 6:00 p.m. to be in position as the "craft lady." Although I knew the afternoon would be busy, I thought, "No problem! I'm sure they'll be finished with us by 5:00 p.m., and that gives us plenty of time to get home (20 miles away, on the other side of a capitol city).
Well, we were still in the waiting room after 5:00 p.m., chatting with a friendly mom with an adorable 2-year-old boy. Anna said, "Mom, I'm a little worried." So I called my son (who was hosting an "open house" of sorts in the backyard for his (self-imposed) summer project of building an outdoor roller coaster. I explained the situation and asked him to talk to my husband when he arrived home from work, to ask if he could cover for Anna at Vacation Bible School until we could get her there.
We finally got into the exam room by 5:20, went through the preliminaries with the assistant (and I mentioned to her that Anna was supposed to be back in our hometown by 6:00 p.m., because she had some responsibilities, although I also mentioned that I'm sure the doctor and office staff really wanted to be done and get home to their families, as well). She tested Anna's vision, and then we waited for the doctor. Anna was trying to read a book, but after a few minutes, she said, "Mom, I can't read!" She was upset and worried as the time kept ticking away, knowing that she really wanted to leave and get back home--and knowing that it was going to take at least 1/2 hour, and rush hour/holiday traffic was just starting. She was crying, so I handed her a tissue and wondered if tear-filled, puffy eyes make much difference for an eye exam. I called home again, and by this time my husband was home. He assured us that he would go to the church and get things started, and I told him we would be there as soon as possible (even though Anna would miss a chance at eating supper---I told her I could drop her off, go through a drive-thru fast food place, and bring some supper to the church).
When the doctor came in, he apologized profusely and said that we would make this quick, especially if there was no inflammation. Well, when he turned the lights out and looked into Anna's eyes, he slowed down and was taking a long, careful time examining her eyes. At that point, I figured that it probably wasn't good. Then I knew for sure it wasn't good when he decided to see if he could connect with the pediatric rheumatologist (via phone) at the medical center. At least that call/page went through fairly quickly. Since we have an appointment with the pediatric rheumatologist on Tuesday, we'll discuss options, for what the ophthalmologist describes as "unacceptable" inflammation in the left eye, after increasing the Cyclosporine four weeks ago. The ophthalmologist asked if we had ever tried or discussed options like Remicade or Humira, so I know that those options may be "on the table" eventually.
As the two doctors were talking on the phone, we suddenly heard a noise in the building. I was thinking maybe it was the air conditioner or something, but the eye doctor looked at me, pointed to the ceiling and said, "Rain!" At the time, I was thinking about the appointment, thinking that Anna needed to be back home in about 20 minutes, knowing it would take us longer than that, knowing that traffic would be bad, and now it was pouring down rain (I hate to drive in torrential downpours, and for safety reasons, I always go more slowly in such conditions.) I was thinking, "This is NOT a good afternoon!."
Well, the doctor provided us with garbage bags to protect our heads and our books (it was sunny when we drove over and entered the building, so we didn't even think to bring umbrellas), and he let us out the back door, which was closer to the parking lot. At least we were traveling west . . . the storm was traveling east, and there was a little break in the action by the time we headed out of Hershey. We took the turnpike, avoiding some of the congestion and able to travel at 65 mph. I was able to get Anna to the church by 6:20 (as she exited the van, she kissed my cheek and said, "Thanks, Mom!") She had been on the phone with her dad as we traveled, telling him where to find certain materials and whom to check with for certain information.
I would say that "All's well that ends well," except that it hasn't all ended yet. VBS has ended, and Anna did a fine job with coordinating the crafts, and she held herself together fairly well for a worried 11-year-old in the middle of a crisis of responsibility vs. circumstances beyond our control. I need to take Anna for a blood test on Monday, and then we have a LONG morning on Tuesday (dentist appointment at 7:30 a.m. for Anna, then the appointment at Hershey Med. with a discussion about what to do regarding unacceptable inflammation, then a drive down the road--about an hour--for private bassoon lessons for Anna).
So this long tale is mainly about the stressful afternoon. Many of you who know me well may know that I have a whole lot of thoughts about these circumstances and where we go from here. Anna is on a fairly high dose of Methotrexate already (thanks to Jill, I was able to get some at Rite Aid this week), and I already see subtle side effects of the Cyclosporine since we increased it four weeks ago (not bad, per se, but little things like more distinguishable hair above her lip, etc.). My gut reaction is to wish to be a little childish and stomp my foot and say, "But I don't LIKE any of the options." (I don't like the idea of increasing anything, and I don't like the options of the biologics.) I can't do that either, since I'm an adult, and I know something will need to be done, whether we like it or not.
So in many ways, I think it's probably good that we had something (the VBS issue) to distract us from the eye issues, and I'm glad that I have a few days to adjust to the fact that we need to change something. I took a long walk around our little town while Anna was at VBS on Thursday. That helped. I know that Anna belongs to Jesus before she belongs to us. I know that nothing surprises Him, and that I can trust her to Him. I'm glad that it's okay for us to mentally and emotionally struggle with issues such as these before we get to the point of acceptance. And I'm glad for an Anchor for the soul, that keeps me sane and grounded when life gets a little uncertain.