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Thursday, July 28, 2011

Vacation with Abridged Family

Sometimes when a family member has severe challenges, bringing them everywhere the family goes becomes difficult, stressful, and even unpleasant. But in our case we also feel uneasy about leaving out our daughter, Roxie, too regularly. Not taking her to the roller rink or to the farmers market isn't really a big deal as I don't hesitate to leave Roxie with her CAP worker for a few hours at a time. But when we discussed going to Baldhead Island over the summer with a group of friends, the subject of how to make such a trip with Roxie along quickly came up. We weren't able to have a CAP worker come with us on this trip, which would have solved some of the issues related to the necessary constant supervision that Roxie requires. But also because of the nature of the trip, we knew Roxie would have trouble. The island is only accessible by boat, and Roxie really, really hates riding on boats because of the motor's sound. So the trip would begin with 45 minutes of screaming, crying, thrashing, and stress. Then there was the issue that golf carts are used to get around and that Roxie wouldn't understand how to stay safe so we'd have to try to hold her down on the ride and hope she didn't slip out of our hands. Also, as most beach houses, the living area is on the second floor, so we would need to watch Roxie carefully to be sure she didn't fall down the stairs. For optimal sleeping conditions, Roxie requires her own quiet room, but she probably would have had to sleep on the floor next to our bed and we would have prayed that she would sleep through the night with us in the room with her because dealing with her challenges with sleep deprivation is not fun. And the challenge of brining all of her supplies on a boat was something I hadn't even thought of until I was packing up for the trip, but would have been challenging and cumbersome. She has many necessary items on a daily basis that are readily available and would have to be brought along. But luckily we had decided the month before the trip to leave Roxie behind in Charlotte with my Mom and Dad for the week long vacation to Baldhead Island.

I feel like I am making excuses and still feel some guilt that we didn't bring Roxie along last week, but it did make the trip more relaxing for sure. And yes, we did have a blast. In addition to the reasons previously mentioned, part of the motivation to leave Roxie at home was likely that daily living with her is tiring and having her away from home and at the beach in particular is even more tiring. As a friend puts it, "A beach trip with kids isn't a vacation, it is a relocation." This is particularly true with Roxie and likely always will be true. As our other kids grow the have obtained some abilities to do some things for themselves and we can only hope this independence will continue to blossom. But with Roxie on vacation, it is like having a giant one or two year old who requires total care.

We missed her very much, but were able to enjoy some time as parents without the additional stress created by Roxie's disease. The trip also made me realize how lucky we are to have a set of grandparents with a beach house, where we typically go to the beach during the summer. Not because of all the money that saves us (although that is nice), but because the house is stocked with many of the special items Roxie requires (including an elevator) and because we have extra hands from grandparents.

Wednesday, July 13, 2011

Don't Be Jealous: We Saw the Wiggles Live

Tonight we took the entire family and Roxie's long time CAP worker to see the Wiggles (AKA Australia's top earning entertainers 4 years in a row). Some of you are wondering who in the world The Wiggles are and others are making the gag me with a spoon gesture. Our family's interest in the Wiggles began when we noticed about 4 years ago that Roxie was captivated by the Wiggles in a way we had never seen. Up to that point she was not very interested in watching TV or DVDs other than the occasional Baby Einstein DVD. But Roxie would enthusiastically sit and watch the Wiggles, while bouncing happily and chanting along to the music, often in perfect rhythm. To this day she loves watching Wiggles' videos and prefers The Wiggles to any other sort of movie or television program. Most likely the Wiggles' intoxicating draw for Roxie and millions of young children world-wide is the catchy music (I will most likely wake up singing Wiggles in the morning), the bright colors, and enthusiasm of the Wiggles themselves (yes they are 4 Australian men dressed in what looks somewhat like a colorful Star Trek outfit, acting silly, and singing children's songs with the help of a crazy pirate, a dancing dinosaur, and an octopus).

Tonight's show was at Time Warner Arena and we never know how Roxie will do in an auditorium type setting. Luckily she was happy for the first two thirds of the show, laughing, bouncing, and chanting along. But by the last third Roxie decided she had enough and started crying, kicking, and throwing her head. We don't know if she was having sensory overload or was tired or maybe a combination. Roxie's CAP worker took her out to the hallway, but she never was able to calm down enough to watch the rest of the show. I think Roxie had a good time before the meltdown and I am glad we all went. It was particularly neat to go to a show that all of our kids were excited to see. I know that this will not happen much longer as McRae and Markos get older. In fact today one of McRae's friend's told her that she thought that The Wiggles are for babies. I was proud of McRae for standing her ground as she responded to her friend that she likes The Wiggles and was excited to see them. I love that she does not yet crumble when confronted by peer pressure and I pray that she will always be that way. McRae and her brother had fun dancing and singing at the show. I think they will always be willing to do things that Roxie likes even as their interests change because the love her very much and are generally sweet kids.