Wednesday, July 25, 2012

Jaycee meets a Favorite

When Jaycee was a baby, I went to a local Down syndrome conference and picked up information about a company called 'signing time' featuring Rachel. I had never heard of this company before. It sold videos aimed at teaching sign language to children. I got my first signing time dvd and then another and then another. Before long, we had a library of them. At first, I got these videos to develop Jaycee's language through sign. As her signing vocabulary grew, I depended on these videos more and more to learn new signs to teach her. I told her preschool about them and they began using the dvds in the classroom too.

 Last year, the signing time lady held a concert a few hours from our house. I wanted to go but Jaycee had several health issues going on. When I found out she was coming back this year, I was excited. A second chance!

I have a friend who also has a child with special needs. They too love signing time. "Hey do you want to drive 4.5 hours one way to go to a signing time concert?" I asked her. She said yes and away we went with our kids on Saturday. 

It was a little surreal being at the concert with Jaycee. She started signing before age 2 and we depended on sign language until she was 5. Now at age 6, sign is still a big part of our lives. There I was sitting in an auditorium filled with other signing kids. On stage was the one and only Rachel whose dvds and songs have impacted Jaycee's life so much. Jaycee was dancing on my lap with a huge smile signing along to the songs she loves.  Jaycee loved it. The music wasn't too loud so it didn't scare her. The lights were on for the signing, so there was no darkness to scare Jaycee. It was the perfect concert for her. 

As we scrolled through the pictures on the camera that night with her daddy, Jaycee signed "signing time" and got very excited!

I love having days like this. When I take my daughter to a fun event and everything goes well, it's great. There's no tantrums, confusion, or episodes of her running away, which is a miracle! It was just a normal day of everything going right. She's happy. I'm happy. We have a beautiful memory of this special day.

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Sunday, July 22, 2012

The miracle of VBS

If you read my last entry, you know that I was pumping myself up to be Jaycee's helper at VBS last week. All I can say is: What a difference a year makes! Jaycee didn't scream and cry and carry on. She adjusted to all the decorations and transitioning well. She tried to roam off a few times, get on stage, and do some random, unexplained acts. Overall, it was much, much better. It was one of those times when God taught me to take a risk with her and trust Him. It was amazing. I'm glad I took her back and didn't talk myself out of it.  The audience got a good show at the vacation bible school program Friday night with Jaycee trying to slap me while on stage and refusing to leave the stage. She wasn't done performing apparently!  Sometimes, you just have to laugh!

The touching part of Bible school for me was seeing Jaycee with a few of the kids in our group. In general, most kids tolerate Jaycee, a few are mean to her, and a few rare ones seek her out and befriend her. There were a few girls in our group that lead Jaycee around the church. They asked her to sit by them at snack. Jaycee didn't understand. She just sat in an empty chair. The girls moved tables to be with her. They asked me questions about her to see what her interests were. They carried her around and gave her horsey rides. Kids like that who work so hard to be a friend to Jaycee truly reflect God's heart. They pay attention to someone that is often ignored or ridiculed. That was a wonderful thing for me to witness as her mother. I am blessed to be in a church where Jaycee is accepted by so many kids. VBS was good for Jaycee and I in many ways! Can't wait for next year!
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Friday, July 13, 2012

Giving Myself A Pep Talk

I have decided that I will be very open and honest with you about the thoughts churning in my head today and in the next few days. Next week is our church's vacation bible school. Jaycee attended last year and I helped out in another group. I believe my exact words on the last day last year were "I am NOT doing this with Jaycee again!" 

Times passed and memories of that event dulled a little. When they announced that it was VBS time again, of course I signed Jaycee and myself up right away. It would be hard but I had a few weeks to prepare myself. Yes, I know how ridiculous it sounds to be all worked up over a church event. Yes, I know God doesn't want me stressing about VBS.  The day is drawing near and I find myself in a mixed state of excitement and dread.  If you don't have a special purposed child, you might think that I am being neurotic.  Sometimes I even think that but I know I have a reason for thinking the thoughts that I do.

Jaycee doesn't like change. She knows routines and knows how things should look. She knows when she goes to church, she'll head to class. During VBS, her church routine is different. The church looks different too. I try to prepare her as we drove to VBS last year. "Jaycee, we are going to church school. We are not going to class. You will be doing something different but it will be fun."  I say it over and over again and using sign to reinforce it. She imitates me signing. I don't know if she's comprehending it or not.

Inside the church, the elaborate decorations captivated the other children at VBS. It confused Jaycee. She could not enjoy the beauty of the decorations because they weren't suppose to be there. During the large group meeting, the other kids were excited. They sometimes were loud. Some of the leaders encouraged the kids to shout. The other kids loved it. Jaycee covered her ears, cried, and even soiled her pants. She ran out of the church trying to get away from the noise a few times. She can't speak but obviously she was upset. Parts of it were simply not fun for her. I questioned if this was a good idea. Should I bring her if she's miserable and confused? Is this going to make her hate church? Is this doing more harm than good? Maybe she needs to learn how to function in these situations. Maybe she needs to know that sometimes routines/things change and she needs to know how to adapt. I hung in there, determined to follow through after making some adjustments for the parts that were just too much for her. On the 5th and final day, she smiled a few times. She did some of the motions of the songs. She was just getting the hang of it when it was basically over. Last year was rough but we made it. Although, she did not want to go in the sanctuary at church for several weeks afterwards. She threw herself down and started to cry whenever we stepped in the sanctuary. It eventually stopped.

So here I am a few days before VBS starts giving myself a pep talk. This year will be better. She's a year older. Things will be fine. I can do this. She can do this. It will be fine. God, give me ideas on how to make this go smoother!

Tune in next week to see how it went....
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Friday, July 6, 2012

ME, ME, ME, ME, ME, you

Things happen in your life that changes your perspective. My perspective changed enormously when Jaycee was born. Having a child with a permanent disability and health problem after health problem changes how you look at life. Here's one example:

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda (John 5) many times. The story is about a man who has an infirmity for 38 years. He spent his time at this pool of water because "an angel went down at a certain time into the pool and stirred up the water, then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had." He told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him.  Jesus tells the man to get his bed and walk. He man did it and was healed.  What I mainly got from this story is that the man suffered a long time and his healing came in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. Obviously, the other people felt they needed the healing more. There were some pretty sick people there who were "blind, lame, paralyzed." To step in first, you got your healing. But, that also meant that other people (maybe worse off) did not and would have to wait.

So what did that story mean for my life? It's very easy for me (& probably other people too) to become very self-absorbed in the middle of a health crisis. When Jaycee had a health issue arise when she was a baby or toddler, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but not at the same intensity. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

This story reminds me and challenges me. No matter how "bad" things are going. No matter what craziness is going on in my life. I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.
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