Wednesday, May 8, 2013

It's Not About Church

I was raised in the Catholic Church and attended Catholic school until 8th grade. There were a lot of positive aspects about growing up Catholic and Catholic school life: the uniforms (not), the church carnivals, and the camaraderie. But... Shortly after high school, I came to the conclusion that religion was a bunch of BS. There had to be more to God than just going to church every Sunday. There had to be more than fasting during Lent, or saying the Rosary among other things. If that's all there was to it, then I wanted no part of it because it felt shallow. No, it felt hollow.

Unfortunately, I made the mistake of leaving without having anywhere else to go. So I wandered, spiritually, for a good 15-20 years. Buddhism sounded good; earth-based spirituality sounded good; agnosticism sounded good. Sort of. I never really took anything else that seriously. Oh I read a lot and talked to a lot of people, but nothing ever really appealed to me. I came to the conclusion that I didn't need religion. I was "spiritual, but not religious". Snicker.

When my oldest son was about a year old, we were getting ready to leave southern California and return to Seattle. At this time, I was beginning to long for the church community that I had as a kid. I wanted our family to go to church, including my husband (who was raised Lutheran) who swore that unless it was for a wedding or a funeral then he wouldn't go. I looked into a church for both of us, and found a Unitarian Universalist church in Seattle. It seemed like a good fit for both of us. (Sounds like shoe shopping, doesn't it?) It was also during this time, that my youngest son was born, and folks from this church came by to drop off meals and offer sympathy and condolences. In spite of this, it wasn't what I was looking for; something was missing.

In 2003, we came back to northern California and looked for a church. We didn't like the UU church, so we attended a United Church of Christ church. I liked the people, but we were the only family with small children. And still, something didn't feel quite right. In 2007, we decided to leave this church and begin shopping for a new one. It sounds crass, but really, that's what we were doing. We wanted a church with more families. When we heard that the "big" church had a special needs program, we decided to try it. It wasn't nearly as bad as we thought and we ended up liking it despite our preconceived notions.

It was May 2008. We had been attending this big box church for about nine months, when I began to feel unsettled. Was this the right church? I don't remember the exact date, but I think it was the 10th. It was late at night, and I was alone in the garage (that's where our computer was) and I was paying bills and balancing the checkbook. I was feeling overwhelmed and tired. I closed my eyes and had this dream - some might call it a vision, but that still sounds creepy to me. I was sitting on a fence and I'm positive that I heard God say, "Choose. You've gone your way all these years. It's time to choose: your way or Mine." I said, "I choose you, Lord. I choose Your way." In my dream I jumped off the fence and went running through the clouds toward God's voice. I know, it sounds corny and crazy, but that's what happened. When I opened my eyes, I began to cry and to confess my sins to God. I acknowledged that Jesus was the Messiah; that he died on the cross for my sins; that God raised him up on the third day. The peace that I felt was surreal. Where just an hour before I was anxious and overwhelmed, I was now at peace. I was baptized the following Sunday on May 18, 2008 at the same church, which I still attend.

My long-winded point in telling my story is this: I was looking for a church, not the reason for the church. I was looking for a community; I wasn't looking for Jesus. For a long time, I was one of those people who was able to attend church without really being a Christian. You have to have a relationship with Jesus, otherwise church is meaningless. Without Jesus, a church is another social club, or worse, a social obligation. I'm not saying that a church community isn't important, because it's the church that is the body of Christ. What I am saying is that going to church will not automatically mean you have a relationship with Jesus. Make sure you have that above all else.

I'm still not religious, BTW.

If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved. ~Romans 10:9

Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household, built on the foundation of the apostles and prophets, with Christ Jesus himself as the chief cornerstone. In him the whole building is joined together and rises to become a holy temple in the Lord. And in him you too are being built together to become a dwelling in which God lives by his Spirit. ~Ephesians 2:19-22

Thursday, May 2, 2013

Anti-Epileptic Meds: Damned if You Do, Damned if You Don't

After discussing the results of his abnormal EEG, the doctor recommended Keppra for my youngest son. I talked with a couple of parents whose children took Keppra and I visited various epilepsy boards. The common theme was: be aware of "kepprage", which is extreme irritability and anger while taking Keppra. So, I watched and waited. Maybe it was a self-fulfilling prophecy or maybe I saw what I wanted to see. (I'm trying not to swear anymore, so please forgive this next sentence.) But holy crap on a cracker...what happened to my sweet little boy? You can't tell me this is merely puberty. After 3 weeks of having him on this medication, I was done. I was done with the scratching, the yelling, the hitting, and the tears.

I called the neurologist's office with my concerns and asked for other options. The nurse recommended doses of vitamin B6 to combat the irritability. In the meantime, she would send a message to the doctor. Fine. I got some B6 and magnesium and put them in my son's nighttime pudding. The following morning, the nurse called again saying that the doctor had written a prescription for Trileptal. Both Trileptal and Keppra had to be taken simultaneously for two days after which we could discontinue Keppra. Hooray! Or so I thought.

The patient advisory leaflet for Trileptal contains warnings for the usual side effects such as: constipation, dizziness, fatigue, nausea, vomiting. Nice. It also contains warnings for: double vision, difficulty speaking, (I had to laugh because my son is blind and nonverbal. Bad form, I know.) difficulty concentrating, loss of coordination, difficulty walking, and low levels of sodium, which ironically can produce more seizures. Hmmm, you don't say. Yes, but what are the odds that he'll experience these side-effects? Well, I don't know. However, I do know that the odds are not as low as zero. When he was an infant, he was taking phenobarbital and Topamax. He was a zombie. It wasn't until he started the ketogenic diet and came off those meds that we started to see him make progress. Seriously. While on Keppra, he was angry and irritable. These meds are not to be toyed with.

I immediately realized that I was damned if I did and damned if I didn't. If I decided to continue medication, there would most likely be side effects. If I didn't do medication, there would most likely be more seizures. Either road can have serious consequences. This morning, my husband and I asked ourselves, "Is it worth it to medicate him if he only has a few seizures a year?" This is a question that is difficult to answer. You see, I had a co-worker who died during a seizure. It was only her second seizure. And she was taking medication. I think a better question would be, "If this happened to your son, can you live with the fact that you didn't try to prevent it with meds?" For me, the answer is, "I don't know." I'm not saying that to be flip. It's a no-win situation that requires careful thought and consideration.

For now, we're going forth with Trileptal. As with everything, it's in God's hands.

For I am the Lord your God who takes hold of your right hand and says to you, "Do not fear; I will help you." ~ Isaiah 41:13


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