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Thursday, September 8, 2011

Filled with Hope and Fear, part eight...

The day progressed with moments of fun as more family arrived. Mark is the youngest of four and each of his siblings have two children each. We are the odd balls with three children, Mark and I always wanted to have four or maybe even five kids, Teale changed that plan. We often say she is like having  many children, her challenges keep us busier than our other two children by at least double. Her doctor appointments, tweaking of medications, advocating services both in the home and in education are all full time jobs. Then there is the actual hands on care she requires. She will never be fully independent and her future is often a source of discussion in our lives. It is our biggest fear as we age and wonder who will be there for Teale. These weekends with Teale's cousins give me hope that they will look out for her in the future, but who really knows where their lives will take them? This gathering is a tradition we have been doing for many years now, all Mark's family drives from the Rochester area to meet at his Aunt and Uncle's house. Then there is the additional people who join us, depending on the year, another sibling of Mark's Mom's and or their grown children. The gathering is a great place to see the extended family we often don't see throughout the year. Mark is close to his MA family, as children they vacationed together, camping across New England mostly, their bond is deep. His Uncle is remarried after the death of his first wife and a favored Aunt many years ago. His "new wife," has jumped in with both feet. She is a great addition to the family and seeing Mark's Uncle so happy is nice too. They built a beautiful home on a pond, clear like a lake and weed free, but smaller, it a gorgeous setting for a reunion. With boats, kayaks, fishing and swimming available, the kids and adults alike, all love going there. Mark's cousins live in MA also, both staying close to their Dad, with one of them building right next door. The property between the two families is fairly large and in the past Mark's siblings have set up camp on it. We have always gone the hotel route, having Teale makes camping very difficult. She often wakes in the night, sometimes even several times. In a tent she may be confused and stay awake, which in turn could wake the whole family. The hotel was easier for us and on top of it my girlfriend, who works for a hotel chain, always got us a great rate. Unfortunately this year my friend could not secure a discount in the area, so we decided to brave it and camp also. After all, Gwenn always felt like she missed out on that part of the weekend and Teale has matured in many ways. But with how tough things had been recently, my nerves were high. Years ago we camped in Virginia with Mark's sister's family and Teale didn't sleep. You may think I over exaggerate this, but seriously she slept so very little we were close to driving home after only two nights there. It had been a brutal drive to Virginia and we needed some time to recoup before the drive home. But Teale just could not settle in our pop up camper, so we  heavily considered just bailing on the trip. Somehow we couldn't do it, probably disappointing Beau was too tough for either of us. So we did the best we could, driving out of the campsite at all hours so no one could here her. I think it was because she was used to sleeping in her own room,  that sleeping together made her think we should all still be up. Teale was just over two at the time, Beau was five and a half and Gwenn was not even a thought. We ended up sticking it out, but it never got easy. Add in the fact that it was really cold and rainy, the sleepless nights and Mark's sister's family being affected by Teale's behavior, we could have been a whole Chevy Chase "vacation" movie. Mark and I have an acceptance factor about our life that many outside us either don't have or don't even get. That vacation I realized his sister probably would not have been a good Mother for Teale. She was intolerant of how her sleep was effected, compassion for what we and Teale felt wasn't there. Her need for sleep seemed even more than the average person, so our disrupting it caused much stress. She was exhausted because of our tough nights and we felt the pressure to fix it. So in MA as we set up the tent far away from her family, I pray to God this works out. The night falls and Teale is edgy, sometimes I wonder if being deaf makes night more confusing? She is legally blind also, the vision Teale does have, she uses incredibly well, but it is a huge loss, half of each eye. Getting inside her head is a method I constantly use in parenting her. The darkness must be confusing, especially in an unfamiliar setting. She can't see faces as well to speech read, voices are heard, but not clearly. Even in perfect situations her hearing is never perfect. She probably feels lost without people's visual cues. I also know the medication we gave her earlier is wearing off, causing anxiety. Besides all that exhaustion is setting in. She won't want to sleep with the gang all still up though, so we are playing it by ear, hoping we don't have a complete meltdown. Wine and beer are flowing, but I don't dare. The thought of dealing with Teale when I'm not sure how this will  play out makes me want to stay on top of my game. Gwenn is running with the older cousins, she is the youngest of all and much enjoyed. I feel like her care is not even my concern at this reunion. The cousins take over Gwenn for me, one kid off my plate is very helpful. Somehow I end up sitting with Mark's Aunt, alone, comfortably talking. I figure if Mark is having trouble someone will call me. Mark and I use our cell phones as lifelines at home, texting or calling each other to get help in emergencies or just to stay in touch. Here our cell's don't work, it is frustrating but we deal, usually. That night as I sat enjoying some one on one time, I heard Teale, but she sounded happy and even though my gut said go, I didn't. If our cells worked I would have texted Mark a quick "u ok?" I stupidly ignored my gut and sat chatting, convincing myself the kids were probably playing "The Game" and that was Teale squealing in delight. "The Game" has been played since Mark was young, tag in the dark with a blanket over the person who is it. Sounds safe hu? Teale doesn't really play, but she loves to watch the chaos when the cousins play. By the time I hear the shift in her voice and know those are not happy squeals, Mark has her in our van, with the door shut, both of them over the edge. A method we have used for years is switching who is dealing with her. Often it breaks the cycle, as she gets stuck on being mad at one of us. I saw poor Mark was fried and told him to go, I'll take over. It was INTENSE! She was shaking uncontrollably and screaming louder than I had ever heard before. She wasn't calming and I was forced to give her another dose of our emergency medication. This trip was feeling completely doomed, as I waited her out, she wasn't attacking me, but she was out of her mind crazy acting. I had never seen her like this, it caused me much alarm as I watched her behavior truly seem insane. It was like something out of a bad movie depicting a mentally unstable person. I struggled for descriptions of what I was watching, knowing if it came to us going to a hospital, they would ask. I feared for what the hell this was, a seizure coming on,  a medication reaction to the emergency medication and now I have given her more? I watched in horror, helpless, wondering what my daughter was feeling and what had brought this on. I was sad for Mark, guilty feeling that I hadn't come to his aid sooner and of course heartbroken for Teale. My heart was heavy as I waited for the medication to help her calm. Not having a clue what my next move would be to get her to the tent for the sleep she so desperately needed. I watched Mark slink off toward the tent after it was apparent I was ok. He looked so defeated, hopefully sleep would renew us all.

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