A Not So Fun 4th and Tough Week for Faith

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The other day Faith and I were standing in line at the pharmacy, and someone asked her, "How was your 4th of July?" She responded quite honestly, "Terrible!"  Yes, it was definitely not a very fun 4th. In fact, this whole week has been one challenge after another. The only thing we really did for the 4th was go to Art in the Park in Mandan, which was last Friday. Faith found a new tie-dye t-shirt, and I enjoyed a yummy root beer float.  Art in the Park in Mandan on the 3rd I had actually gone with the goal of getting an Indian taco, but it was so humid, I didn't feel like eating anything hot. Because it was so warm, we only stayed for an hour before heading back to Bismarck. That night, I noticed that Faith seemed uncomfortable in her chair, almost like she was having pain. She told me she needed to get out and lie down. I thought maybe being out in the high humidity had been too much for her or that she was having muscle spasms. After she lay down for a bit...

Church Cheers

Admittedly, it has been tough to find the right church that works for our family. We have tried several in the Bismarck-Mandan area with each of them having their own pros and cons. And a pro for one person in our family can be a con for another. Take the praise and worship time, for instance. The louder and more exciting the better, for me anyways, but not for Faith.

With her CP, Faith has something called a "startle reflex." It's something newborns have but they grow out of it. When a newborn baby is startled their whole body reacts with arms flailing and legs going because they can't control those movements yet. For Faith, she has never been able to control those movements. It used to be that when she startled many times in a short period she would get very upset and would start to cry.

Another issue she has is if she is somewhere loud and dark with the noise varying at different levels, she is very tense the whole time and her muscles just can't relax. Places like movie theaters are an example. And as we found out, charismatic church services are another example. One minute the pastor may be very quiet but then suddenly becomes very loud - this will cause Faith to startle. She'll be tense the whole time because she doesn't know when she will be surprised again.

Finding a church where Faith can relax and not be so tense has been a bit challenging, especially for me who really likes those very charismatic church services. Rob on the other hand can pretty much go to any church and be okay with it, as long as he is free to take part in communion and gets something out of the message.

At some churches we would try to sit in various spots - like the back row, sitting way back in the corner, sitting outside in the lobby area or sitting in the coffee shop. While sitting in these certain areas may have helped alleviate some of Faith's startles, it felt to us that we weren't really a part of the service or the fellowship.

After years of searching, we have found a church for the three of us. Rob's friend from work invited us to their Saturday evening service at a church called Shepherd of the Valley. The evening service is less traditional, the music more contemporary and Faith really seems to enjoy being there. We can sit way up front and not have to worry about Faith getting nervous or tense.

Another thing we discovered is that some friends of ours from the CP support group go there as well. Faith really gets a kick out of their 21-year-old son, who is in a wheelchair too.  

This past Saturday was interesting, and I sort of held my breath when the pastor announced what we were going to doing. He had a message on confession and forgiveness. He explained that there are four promises of forgiveness - for each promise, his wife had thought of a cheer for all of us to yell. 

One side of the room would yell the first line of the cheer and the other side would yell the second line. I did not know how Faith was going to react. Rob and I both looked at her and I quickly explained to her there was going to be a lot of yelling.


 The pastor read the first promise of forgiveness: I promise I will think good thoughts about you and do good for you.

Then we yelled out the cheer: THINK GOOD THOUGHTS! DO GOOD THINGS!

Faith tensed up a little but she didn't startle. Instead, she began to laugh.

Promise: I promise I will not bring up this situation to use against you.

Cheer: DIGGING UP DIRT...IS NOT GOOD WORK!

Faith continues to laugh.

Promise: I promise I will not talk to others about what you did.

Cheer: G-O-S-S-I-P...GOSSIP IS MISERY!

More laughter.

Promise: I will be friends with you again.

Cheer: FRIENDS RESTORED...IN THE LORD!

After the last cheer, we had to try to get Faith to stop laughing and continue to listen to the pastor. After we visited for a little while, Faith said on the way home, "I had so much fun at church!"

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