We All Lose It Sometimes

The other night I was completely frustrated with Teale not cooperating. As Mark took over, I flipped Teale "the bird." Yes, it was horribly wrong and immature of me. But, somehow it made me feel better and no real harm was done. Teale may understand sign language better than me, but this "gesture" she didn't get. Ironically a day later, Mark was in the same boat, Teale was pushing his buttons badly. So as I took over, he used my method of frustration release and flipped her off! Teale continued to be angry at Mark as I helped her get into PJ's. Mark tried to decompress nearby on the computer but he could hear her still talking about being mad at him. Then suddenly she "flipped off" Mark and said "Stop doing that to me!" I tried to resist the laughter brewing in me, but I am embarrassed to admit, I found it hilarious! The mood was suddenly broken by all three of us laughing. Maybe we were both wrong for doing something so immature toward our disabled child but we don't claim to be saints & sometimes we all lose it!

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.

Filled with Hope and Fear, part seven...

We walked through the door to the welcoming voices of Mark's Uncles and Aunts. They are pretty aware of Teale's sensory issues and don't push to touch or hug her. A reminder is usually appropriate as they see her very little, a couple times a year at most. She is a child who hates being touched, unless on "her" terms. She even reacts in anger sometimes to the slightest rub of her arm or pat of her back. I am constantly conscious of this and often need to warn people of her strong feelings about this. I have a dear old friend who likes to "push it."She will touch Teale constantly when we are together. Teale somehow usually takes it from her, never blowing up anyway, but it creates tension. I worry she will melt down because of something so simple as respecting her need for space, which could in turn ruin my time at the friends. There was a time in Teale's life we thought we would be able to "break her" of this by giving her a lot of sensory input. Now I just kinda except it, as part of who she is. I can't say I am completely fine with it, who doesn't love giving their kid a huge hug or want to hold them when they are hurt or sick? I push it too sometimes, but I know how much to push usually and if a meltdown occurs, well I have to deal with it. She will "take" bear hugs, sneak attack hugs, squeezes between Mark and I will sometimes make her laugh that we got her. I ask for kisses almost daily and occasionally she'll allow me to kiss her forehead without too much drama, always wiping my kiss away. So as I walk into new settings, into places where people may hug to greet each other I am constantly aware of Teale's needs. As we finish our greetings, she finds a high chair to sit on at a counter and I realize she is tearing and the color has gone out of her face. Teale never cries. In her twelve years of life I probably could count the number of times she has had actual tears from pain. Those few times have been with major injuries, like the two times she broke her leg, we knew it was serious because of her tears. Otherwise she often shows pain with anger. As I look at her, her color is so off, she is actually grey,  causing me much alarm. I ask her what's wrong and pointing across her stomach to her upper right causes more concern. Is it her liver, her gallbladder, her appendix? Her color scares me and I start to worry about her throwing up as she looks incredibly clammy too. We just went through a stage of her being sick and vomiting a week ago. She does not know to vomit in something. My mind races, both Mark and I try to convince her to go outside with us. She seems to be in genuine pain as the tears roll down her face, not even ten minutes out of a hellish 6 hour car ride and all I can visualize is a trip to emergency. I think about the hours we would spend and the lack of understanding we would face. Ironically her GI specialist is in Boston, but that is about an hour away. We finally convince her to go outside with us. She lays down on the hammock swing and I text her pediatrician. In no time my phone beeps that I have a voicemail, cell reception here is bad and his call went straight to voicemail. He is worried and thinks we need to talk, probably see someone ASAP, grey is not a color doctors want to hear. I look at her again to make sure I am not over exaggerating her color and realize she looks dead, I even say it out loud to Mark. (she has no reaction at the time, but later when she is better she repeats my comment, asking me "What happened, you thought I was dead?") Her chest is rising and falling with each breath, but her color is so bad and her eyes are glazed over, almost rolling back. I realize a seizure may be coming. I yell for Mark and tell him I am going to call our pediatrician back, I need to walk to the van, about twenty yards from Teale, where I found my cell worked. I'm also going to grab her diastat, the emergency seizure medication, just in case. As I walk off, another car of relatives arrive, I explain quickly what's going on, hopeful Teale may come back with their arrival. This could just be car sickness I keep telling myself. The doctor I end up talking to confirms that thought, but again says grey is alarming and we would want her seen. I am kinda an expert at this stuff though, as I have dealt with much medically over the years with Teale. I push, asking if we could wait it out just a bit longer, see if her color comes back? I hear Teale now in the background and share that her voice sounds happy, like the cousins have her laughing. I think we are going to be ok I tell the doctor, emphasizing we will go in ASAP if we are see anything else. Her color had been grey about a half hour, but as I walk toward everyone, I hear Teale's laughter. She is up and has a pink to her complexion again. The many mysteries of Teale. We may never know what that incident was, but looking at her smile, I am thankful she seems to be ok and that she in my life.

Filled with Hope and Fear, part six...

We are finally in the home stretch, we will be to Mark's Aunt and Uncle's soon and then what? Will it work or be a disaster, making me wish I had just stayed home with Teale? Surely the cousins will be a  source of entertainment and a good distraction! I love how they have embraced Teale as they have aged. There were years it didn't seem like they "got her" or would ever understand Teale's disabilities and how they effect her in so many different ways. There were times that the hurt cut right through me. Somehow I always expected more from family. After all they were there from pregnancy on, they were given the most candid information of anyone, they were blood relatives. Mark and I don't hold back much, well he may, but I am very open about our life. I was once told by a family member, "I can't think about your pain, what you guys go through, because it hurts too much." Well, that hurt, sticking your head in the sand doesn't make our life easier, but it does make you unaccountable. It takes the pressure off you to help. There used to be comparisons of Teale to her cousin who is a similar age. There were expectations that Teale would develop at the same pace when they were both very young. As the gap got bigger, as Teale's personality developed, the understanding got better. Still, there are times I feel like family would rather not have to deal with Teale. She is the epitome of when she is good, she is very, very good, but when she is bad, she is horrid. When Teale is ruining "their time" together, I feel self conscious, like I should be able to control it. When she is exploding at Christmas because the excitement is just too much. When she wants to hear the same song played by Mark's musical family over and over again. When she asks the same questions, tells the same statement and when she interrupts constantly, I know her behaviors wear on them. They wear on me too, but I have very little choice but to deal. Sometimes with others though I feel the pressure to fix it, to get her to stop whatever it is. If it goes into a huge meltdown, I feel the pressure to get her out of sight. I sometimes feel like people just don't want to have to deal with my kid and the reality of what our life really is. Because our life isn't always pretty and even I want to run sometimes. When others see what the tough times are like, I often remember what our church family minister said once "They are only seeing a snippet of what you live daily." This somehow centers me, takes away the frustration I feel to fix what basically I can't fix. Family is human, they feel what they feel, it is not good or bad. Just because you are family doesn't mean you embrace Teale, that has taken me years to realize. We all struggle with how Teale's behavior effects us, I do, Mark does too. My perceptions have changed, I no longer hold family more accountable or feel more hurt by their inability to understand what we go through. I just see them as people. My life has taught me, some "get it" and some don't. Some people want to support you and some want to pretend your struggles are not that bad or not their concern. I think no mater what, Mark and I often present well, like we are holding it together. Even in the most wretched times, only a few will really know our pain. In some ways this may be hurting us. We are not as strong as you may think, we hurt often, it is a deep hurt that never truly goes away. We worry constantly about her future, but thankfully we have each other to lean on and God. Teale has taught much more to our friends and family than probably many realize or acknowledge. Just by being Teale, by being Teale's family or a friend of ours, you will learn about being faithful, devoted and loyal. As she ages, I see relationships change. I see family and friends who I think will be there for her and the ones who probably won't. As her cousins grow, they give her gifts of laughter, love and joy. What they get from her is hard to put into words, but it is amazing none the less. She will always need them looking out for her. As they start their own more traditional lives, I hope Teale will always be part of them. So maybe we won't be the best company in Massachusetts this time. Maybe the explosions will be frequent and intense, but we are part of this family. We are loved and more and more as Teale ages, I believe we are accepted, as is. As we pull into the driveway, I try hard to focus on that. The door opens and I step out of the van, keeping in mind a phase I often use, "It is what it is!"

Filled with Hope and Fear, part five...

The questions that we can't answer start.I hold my breath as Mark answers them, knowing one "wrong" answer will throw her into another rage. The stress is exhausting, so to take my mind off it I text friends. Listening to the questions being bombarded at Mark all the whole. Sometimes they are sweet innocent questions, she is deaf, her world is often not clear to her. Other times it feels like a game she is playing and we can't win. Every answer we give is wrong and she won't give us even the slightest hint what she wants us to say. One day we were coming home from a soccer game, all five of us in the big red van. Teale had the front seat next to Mark and was listening to her personal CD player. She had on headphones and she has her own case of CD's, ranging from her cousins singing to Justin Bieber. As she listened she turned to Mark, asking who is he singing to? Not knowing who she was listening to, Mark took a chance and answered "you." It was the wrong answer, "NO" "NO, he not singing to me!" she screams, the switches have been quick and intense. Teale starts slamming her CD player, Mark asks questions so he can answer her "correctly" but she is already gone and now we are all in danger. She threatens us, angry, anything in the van near her may get thrown. Mark scrambles to figure out a plan, a place to hopefully regroup. She is hitting him and pinching his arm, I step in, so he can drive. Scenes like this are common in our life, now she is angry at Beau for "looking at her" he is trying to protect himself from having something chucked at him. Gwenn is in the way back, so she scoots behind a seat. Beau jumps back there also, my biggest fear is she will hurt one of my kids, severely. Her aim is amazing, she could throw something at our heads with exact precision. She doesn't have the thought process to realize you can not undue an injury like that. Ironic, I have fears of her causing brain injury to one of us, when her brain injury would be the cause. Well, this time, on the way home from soccer took some work to get through and a stop at McDonalds for frozen strawberry-lemonades. We got home safely, but not unscarred mentally. We all react differently to those incidences. I feel fried by them, especially if they have been coming often. Usually though, once we are safe, we all use humor, imitating the situation and laughing at the ludicrousness of it all. "NO!" "NO, he not singing to me!" Ugh, it really does feel like we are living as entertainment for someone watching us. So as Mark tiptoes through her questions on our way to MA, I look at the highway we are on with no area to pull over. The high rock walls where they cut through the hills to make this highway make it impossible to pull off to the side. She melts down here and what will we do? We are close to our destination, about an hour or so to go. I pray that the edginess she is starting to show calms and we get there, but I know getting there doesn't solve it all. There are fears about "there" also. About effecting the family's time, about Mark getting to enjoy his family and Gwenn too. Will Teale sleep ok in the tent we plan on putting up on the property or will we cause no one to get any sleep? My head spins with concerns and questions. I wonder why I came? Maybe I should have stayed home with Teale and let Gwenn and Mark enjoy this weekend alone? But Teale LOVES this weekend, she loves her cousins and the boat rides. She loves the music that the family will play around the campfire, she just loves the time at Uncle Richie and Aunt Jackie's. Teale has so little joy outside of home. She has no true friends that she hangs with. She hardly ever plays with others, adults are generally her best friends. The cousins get her, they are the closest thing to friends she has, along with us. This is why we came, this is a memory she will cling to and cherish all year long.

Filled with Hope and Fear, part four...

So we drove as far and as fast as we could to get some miles behind us as Teale slept. I texted friends, sharing my anguish about the last few days. Life with Teale is much like a roller coaster ride, there are highs and lows, this had been an intense low. There are times when the rages are few and far between. Then there are times when the rages are often and intense. We were in that cycle, often and intense, the raging was breaking our spirit. Both Mark and I were worn and ever so sad. We were hopeful this would pass quickly. The changes are so frequent with Teale that we know it may only be days of hell, but then again there have been cycles that have lasted months. It is almost like you get used to the bad cycles and stop realizing how bad they are, you just survive as best you can. But then when she finally comes out of a bad cycle, you reflect back and realize that it was incredibly challenging. I seem to never really go completely under, it never brings me so far down that I give up hope. That feeling of hope is always right around the corner for me. I hope the doctors will come up with a better medication to control her mood disorders. I hope she will grow in understanding and therefore her moods will stabilize as she matures. I hope I will learn better parenting strategies to help my daughter. I hope the better placement we were able to secure this past year for her in a warm school will help her feel more accepted and loved by the world. The list goes on and on, I am always hoping for an improved life for Teale. The discovery this past week of her thyroid running high has Mark and I concerned about what medical intervention we will be facing. Will we be adding thyroid disorder to her long list of medical issues. Both Mark and I have hypothyroid disorder, taking synthroid is "easy" enough, but it is a constant balancing act. The beginning was rough, many blood draws, different doses and waiting out the levels to see if the new dose was the right one. We monitor our levels frequently, blood draws every six months at least, to make sure we are on the right dose. Your thyroid being off can cause a multitude of other health issues. As we add thyroid problems to Teale's medical list, I am hopeful we will solve the frequent rages once we have her thyroid stabilized. The fear comes in when I let myself think about how long this will take. Mark and I are all too familiar with being patient when it comes to building up medications in the blood. Medications that need time to get to a level that is appropriate have been added many times to Teale's "list." There are the medications that we monitor often, making sure they are in a good "therapeutic range." Luckily, Teale does blood draws like a champ, no fear, no fighting it, she holds her arm out and stays still. To me this is a gift from God, watching her cooperate with this task many typical people find difficult gives me great satisfaction! We will solve this thyroid issue, we will get our Teale back, but as she wakes in the van on our way to MA, I am reminded that it won't be easy until then. She immediately "starts in" angry and intense, her CD player is "not right." Switching to her personal DVD player only makes things worse. She is unsettled and everything is making her mad. She can't wait for it to load the DVD without freaking out. She is hitting the player, angry and unstable, she has broken many electronics over the years. Her understanding of consequences to such actions is lacking. We try hard to teach this to her. Once she literally ripped a DVD player in half, we used that as a lesson for months. You broke your DVD player, we would remind her, so you no longer have one. It seems simple, right? Well it wasn't, sometimes the rages would take over her and she would need to be controlled by physically holding her until it passed. We would use that example of the DVD as she tried to break other cherished items. I found myself saying often, "if you break that you will not have one, just like you DVD player." We even saved the player, so we could show it to her over and over again. Once we thought the lesson was finally learned, she was given a new DVD player by Santa, with the hope she understood. So as her intensity rises in the van and she starts treating the DVD player roughly, we bring up the old one she broke. Mark and I are probably two of the most stupid or hopeful people you may ever meet. We so believe Teale can learn these lessons, we take a chance at teaching her always. This may not be the right time or place, we are all so vulnerable in the van, if she rages. She may not be in the right mindset, considering all that has been going on physically with her. She is just coming off a strong sedation, she is loopy, fatigue makes her even more unreasonable, but what choice do we have? We are on the road to MA and she loves her DVD player, but she is about to destroy it or maybe even throw it through a window. Her CD player was only purchased a few weeks ago, after an older one stopped working properly. Most likely because she is so rough on them. We are not wealthy people, these are the things about having a special kid that outsiders probably wouldn't get. The cost of replacing items that help Teale most of the time, but cause frustration much of the time! Somehow, we get through this wave. Somehow nothing goes through the windshield. Somehow we continue the journey toward MA and the people who love us. ~to be continued~

Filled with Hope and Fear, part three...

So if you have ever been in a car with an upset child, any upset child, you know the stress it causes. A screaming kid who wants out of their car seat, a baby who just wants to be held, a toddler who hates being strapped in, it is all the same, horrid. Teale has been in rages that have broken the windshield at least two times, she has broken controls, cracked car radios, torn off pieces of consoles. Mind you, she has never done this in another persons car, basically never rages with anyone like she does with Mark or I. Her understanding of abstract things, like how far away MA is, just isn't possible. She seems to get it partially, but not well enough to sit back and enjoy the ride. There have been many abandoned car trips, times that we have had to pull over and "wait it out." Times we have had to turn around and get home, where it is safe. We have switched drivers so Mark could hold her until we are somewhere safe. If one of us is alone when one of these rages hits in a car, the outcome is often disastrous. Mark was bitten once, bleeding, driving and literally holding Teale off on a long bridge where there wasn't anywhere to pull off. An older woman pulled up next to him, thinking he was hurting Teale, she mouthed to him, showing her cell, that she was calling the police on him. I can understand how it looked to a stranger, Teale looked like the innocent child, maybe being abused or kidnapped, but how wrong that woman was. The police came to our house, Teale's psychiatrist was able to intervene and we were cleared, but it was terrifying. I was in a similar position once, but luckily I was close to home at the time. I got home, but I was badly shaken, hurt and had a broken windshield. Times like those are tough to "let go" when you are on a long car ride. Stories about Teale's fits in the car are endless, we have experienced more than our fair share. There are many things we have tried, but basically the only thing that works is waiting out her rages. This seems easy enough, but an hour on the side of a busy highway with a raging child out of the car is terrifying, frustrating and exhausting. Often our life is completely out of our control, yes, I realize everyone's is. I realize none of us has control over our children in many situations. I also recognize Mark and I have risen above our lack of control because our love is so deep and our faith is strong. I also have times when I want to run away, times I wish Teale was never born, times I wish I could die. I never really dwell on those thoughts, there really is no use. I believe recognizing feelings, saying the unspeakable out loud helps keep us sane though. There have been times Mark or I have told each other we hate Teale, we know we still love her and the feeling will pass, but we are are human and worn. I believe that acceptance helps both Mark and I in bad times.  He is good at reading my need for a break and I would hope he would say the same about my reading him. We step in for each other when we are feeling too angry to be dealing well to help calm her. We can feel rage and a desire to hurt her but knowing we would deeply regret such an act keeps us both able to step away when these feelings take hold. I pray my way through her rages, telling myself this is not her or her fault. I ask God to keep me strong and to not do anything I would regret. I remind myself constantly that she is Gods child and He would not want me to hurt her. If you have ever had a child with no filter come after you, you understand the strength it takes to not let your protective instincts kick in and hurt the child back. Somehow over the countless rages I have experienced with Teale, I have reacted in a way I was ashamed of only a few times. Don't get me wrong though, I have wanted to way more times. I have been threatened by her strength and wit, I have bleed, bruised and even lost vision for short periods of time. We have what her psychiatrist would call post traumatic stress, as we live in unpredictable stress often. We never know when a rage will strike. I flinch in her reach, as she physically goes after me often, even her kind touches are rough and hard. The cycles of Teale are generally predictable, often a bad cycle comes in both fall and in spring, very classic for a bi polar person. Often her best time is summer, making me often dream of moving south. Fall and spring cycles are when the behavior can be the most brutal, but they pass and then we have good cycles of relative calm. Right now we are in a bad cycle, hopefully caused by high thyroid function that was recently diagnosed and is not yet solved. If we solve this latest medical issue, my hope is we will get the calmer Teale back. Traveling during a bad cycle was either incredibly brave or just plain dumb! The good times generally outweigh the bad, that is how we keep going. The running joke in my house is that "we are Gods entertainment." He is watching us and knows when we are at our wits end, bringing "Teale" back to us in the nick of time. He knows just how much we can take and then the cycle switches. I don't really believe God acts like this. Somehow joking about our life, humor in horrid situations is what Mark and I cling to. We often laugh when it is all said and done, reflecting on our pain with humor makes it so much more bearable.  We hurt for Teale, we work to make her moods more even and hope she gets better as the years pass. There are gains and losses every year. Her being bigger than me at this point was a huge loss this past year. But she has also gained much in abstract thinking, understanding things that in the past would have thrown her into fits. Much like a large toddler, she wants what she wants. Our biggest worry and reason Teale will probably never leave our care is that anyone else would hurt her if faced with what we face daily. So we continue driving toward the vacation she so loves, filled with hope and fear.  She sleeps sporadically, as the emergency medication we gave her to calm down knocks her out. The fatigue she feels can cause worse behavior, she may come off the medicine hard and rage again. For now I enjoy the calm as she sleeps, talking with Mark and trying hard to stay positive. We discuss the experiences of what we have been going through, laughing as we relive what sometimes feels unbelievable. ~to be continued~