Admittedly, we haven't gotten to church as often as we'd like, or as we probably need to go. We're always so busy. Sunday's have been totally my fault. When I haven't been working, I've been too tired to move. Sunday's are the only day that I can't run errands (aside from grocery shopping), can't take a child to the doctor, can't make a bunch of phone calls that need to be made. All week we go, go, go, and by Sunday I crash. Thursday was our weeknight sermon, but now that's our Brownie night. We try to go when we don't meet, but it's far from a weekly occurance. Simultaneously, I have desperately been seeking a breakdown without much luck. It seemed as though I've become too strong to just fully break down. I've become so strong that I'm strong when I don't need to be. Not complaining... it's just funny. There's something about church.... Let me back up a bit.
So, we went to see "Tangled" in 3-D on Friday night for Emily's birthday. We had a wonderful time! All of us enjoyed the movie. My oldest declared it to be her new favorite movie. It was a nice, quality family night. We all laughed, and enjoyed each other. It was so nice to hear Emily laugh!!! She really let go in there in a way that I haven't heard in a while. Afterward we went toy shopping. Her grandparents had sent money in a box full of small bears for her birthday. :) She was so excited! The problem is, she has no idea what she wants. So, I'm standing there watching her wobble up and down the toy aisle trying to find something that she might want to take home. Usually such an easy task, but right now there's almost no joy. She found one small thing, but then she gave up. And I couldn't help but think about last year's birthday. She had a roller skating party. She was doing so well. One year later she can't really get into a store and back out without her chair. She also believes it's time for Raynaud's meds. She's worried that it will be like last winter.
I couldn't wait to get to church! It's always so uplifting for me. And she has always really enjoyed going, as well. The kids there have so many activities to keep busy! Video games, Lego's, a rock climbing wall. Of course, my son just wanted to stay home for once. He usually enjoys going, too, but not today. Em & I got ready and left right on time. When we got there we found a handicapped spot right away, and got to her class area fairly quickly. All was good... until it was time for me to go to my section. She cried and cried that she would miss me too much, just stay with her. I asked if she wanted to go with me, but she didn't want to do that either. I really felt that we NEEDED to stay. I really wanted her to have fun in her area, to have a meaningful lesson, but I knew that was not to be. So, we rolled outside and sat for a bit trying to figure out what to do. She was so excited to go today that it broke my heart to see her sobbing. It was a long, long time before she regained some control of herself. I wheeled her into the lobby, and we sat there through the music. (One of the reasons I love this church so much is for its music!) It's too loud in there for her during music worship, so we waited outside until it was quiet. One of the ladies that used to help out in her class on Thursday nights had passed us a few times. At one point she came over to us. She said "I feel like I'm being called to come talk to you. I don't know how I could help, but I feel like I need to do something." Now, I admit to tearing up often, but just a few seconds at a time. At this point, I could barely speak. 99.9% of the time I'm able to keep composed, but church has always had this ability to tear me open, leaving me exposed. I explained that she did know Emily, that she didn't look like herself. I showed her my favorite pic of Em, the one taken 3 months ago in school with the sassy look. We talked for a few minutes, and she gave me her name and number. I know that I should call her, especially since she was led to us. Why do I find it so hard to accept help?
We finally headed inside. I love the sermons! Today's sermon was on Kings 2, 2- the story of Naaman. The mixed discussions seemed to be tailor made for us. We discussed sickness, problems, how to act when we are offended. Some lessons for her, some lessons for me. On the way out. all of these people kept coming up to her to talk, to kiss her head. A few people came up to her to tell her that she is beautiful. I was so thankful that I started to tear up again. It's the little things. You have to look at the small blessings.
I ran into an old friend (twice today!) We talked a bit and he started to ask me how Kevin was doing. I mentioned that he was dreading the iodine-free diet that he'll need before he does the radiation for the questionable cells in his throat from the thyroid. Thought he knew about that. And that's when it hit me: In just the past seven months, my daughter has been diagnosed with 2 separate disabilities on top of the existing arthritis, Kevin has become unemployed, faced the possibility of cancer, become the human slug from the doctor making him stop his meds, recovered, and then told to stop the meds again, dealing with the financial problems that come from having a child with disabilities and the lost income. And we're sane! And most of us are fairly happy. I'm not sure how. Truly our story is absolutely ridiculous to anyone that hasn't kept up. I'm sure that if I told anyone they wouldn't believe me if they didn't know what was up. My mom summed it up perfectly- we're like a tragic comedy. If we could find a way to make Emily happy, to find some joy through all of her pain, or better yet... a cure. Then we could all be happy. We need to find some way for her to get her smile back. That's the hardest of all. I know it will happen. The question is when?
We went on a mission for Stride Rite shoes. Her doctor says they would help her. No luck today. That's ok. We went to a lot of different stores today. She was quiet all day, and she stayed in her chair all day. I always get so paranoid. Is she sick? Or maybe it's just an off day? Is it because of the decrease of the Prednisone? Probably it's simply that she was tired. She looked through a bunch of stores today and found two more things to buy. Movies are the only thing that sounded good to her. We wheeled up and down the toy aisles to no avail for a very long time. She used to always know what she wanted. I have absolutely no idea what to get her for Christmas. I know it will work out.
And it was 9 years ago right about this time that my water broke with her. Nine years ago that we were blessed with her. Happy Birthday, Punkin'. I wish you well.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Monday, December 6, 2010
Thank God for church
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