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Monday, September 26, 2011

Filled with Hope and Fear, part ten...

The day went by fairly uneventfully. I know we jumped through hoops to keep Teale even and calm. There was at least one rage, maybe more, but somehow we made it through without the emergency medications that had been so tough on her the day before. The help of the cousins was much appreciated as they entertained Teale parts of the day. She took some time just chilling out in front of her personal DVD player also, her Justin Beiber movie calming her. When evening came and the traditional campfire was to start, her anxiety really came out. When I put myself in Teale's shoes, I find darkness scary and confusing. As a child with profound hearing loss, she relies on people's faces, their visual cues to help her feel connected. I saw a difference brewing in her as darkness fell. She was edgy, unsettled and easily angry. Since the campfire is all about the family playing music, Mark is very involved. He tends to take over as the frontman, helping to keep the music flowing and giving everyone who wants to perform a chance. This leaves me in charge of Teale, of course if help is needed he will come to my aid, but I always try to give him this time to just enjoy. Teale is dangerous in the dark, her visual losses are much tougher for her to manage as darkness takes over. She trips over the chairs, the roots, the rocks, etc. as I try to guild her through. I worry about her taking a bad fall and even about a minor one, as this can cause embarrassment to her and then she will rage. The group sits in a tight horseshoe around the campfire, the pond glistening behind it. It is a lovely scene and the music is much fun. All of Mark's family is musically gifted, they each play an instrument and all of them sing. They also enjoy the audience. Each of them loves performing for each other and the guests that are also invited by Mark's Aunt and Uncle. Teale is always stuck on a favorite song, for years it was The YMCA. Mark's family would perform it for her, but she would want it repeated over and over again, as once was never enough. One year they performed The YMCA several times, but each time with a different twist. It was played in different genres; as a reggae, a samba and a polka. By switching the genre, it was more fun to the musicians, hilarious to the group and seemed to satisfy Teale too. I remember thinking how ingenious it was! This year Teale is stuck on Justin Bieber and most notably "Baby." So it was played, but with much warning to her that it would be played one time only. Luckily as she matures she can accept conditions better, some of the time at least. She also had many other songs that we knew would satisfy her. But at some point it was not working, so I got her away from the campfire to calm inside. It wasn't easy and I was pretty frustrated, sometimes it is tough to always live around Teale's needs. Sure, every parent lives around their children's needs to some extent, I do recognize this. I also recognize Teale controls much of my life and usually I deal with this pretty well, but occasionally it really gets to me. This was one of those times, here I was isolated from the rest of the family, missing performances, stuck inside with Teale both edgy and her blasting Justin Bieber music, painful. My husband is a saxophone player and fantastic singer. The bands he plays in these days are for private functions, so I rarely get opportunities to hear him perform anymore. I was mad I was stuck with Teale, I was mad she was taking away something I wanted. Mark's Mom used to sing in bands, so usually her children and grandchildren can talk her into performing one or two songs. As she ages, I often wonder how many more opportunities to hear her sing I have left. That night she and Mark sang together while I was with Teale. That hurt, I was saddened by not seeing them sing together and still it stings. Like I said, we live life around Teale's needs. That night, I gave Mark the gift of being with his family without Teale taking away from his enjoyment. This is how we live, giving each other times to enjoy things that with Teale are very difficult, if not impossible. We are partners in our marriage as parenting proves to be much tougher than we ever expected. We support each other and know when the other is fried and can't deal. We give each other breaks and we share the hardships. Teale has challenged us, but she has also brought Mark and I closer. I am proud of how well we support each other and how the stress seldom comes between us. We recognize each others anger and frustration in tough cycles with Teale as not being about each other. This can be tough, when the feelings surface in an unproductive way, like snapping at each other over something completely unrelated. It happens, I would challenge any couple who lives with our stress to not misdirect anger from time to time. But we have worked very hard at remaining good friends and we truly enjoy each others company. We take breaks from the chaos of our life in creative ways that keep the two of us connected. The weekend in MA was stressful, but to have not gone would have been heartbreaking on many more levels. Eventually I talk Teale into going back out to the campfire and we enjoy the music. I enjoy hearing her laughing with cousins as they hold their breath  to make their cheeks bulge and then "pop" each other's faces. When the music ends, Teale goes with Mark and I off to our tent. Gwenn again sleeps with the cousins inside the house. As I curl up next to Mark, I try not to worry about the next day. The predicted rain is concerning, as we will need to pack up the van for the drive home. We have left more years than not in turmoil, Teale being tough, maybe because of our going home. Mark and I being "done" and anxious to just get home. Packing the van early will be the key, so that if things go down hill we are ready to roll. I go over all we will need to do to stay on task in the morning, praying the drive home will go  smoothly.

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