The Kiss

As I have told in past post, Teale is very sensory defensive. She hates being touched, except on her own terms and this would mean in a rough and tumble way, never is she cuddly! Recently there has been "improvement" in this. I have been asking to kiss her on the forehead, as we tuck her in at night, randomly during the day and also as a kind of payment for something she wants me to do for her. She can do many things for herself, but sometimes she gets stuck and needs to control us by demanding we do something for her. Quite frankly it is often not worth the fight if she asks me for something, even if she can do it herself. I always say, "Teale you can do that." and sometimes she will, but other times you can tell it will be a battle if pushed. So that is how it began, I started asking her for some physical "payment" before doing what she wanted. I tried high fives, hugs, her kissing me on the cheek and probably more. But since forehead kisses have been on and off part of her bedtime routine for years, she agreed to that. It has gotten better and better as she gets more comfortable with the idea. For me it is a gift as I have never had this with her, a show of physical affection. The funny part is, she ALWAYS wipes away my kiss! I have worked on that part for years, whenever she allowed me to kiss her goodnight. I ask her to concentrate and NOT wipe away my kiss. She agrees and you can see her deep thought, you can even see her try to keep her hand down, but inevitably, she wipes my kiss away. The other night I asked her if I could give her a kiss and she told me with a twinkle in her eye "No, kiss your boyfriend." Guess I should explain that one, my husband of 22 years is my boyfriend. Teale started referring to Mark, as my boyfriend about a year ago. So, anyway, I looked at Mark, who is over a foot taller than me and asked him to bend over so I could kiss him the forehead, just to be funny. She got the joke and laughed, but then quickly, she wiped his forehead for him!

Medicine Trials

If you have a child with special needs, you probably understand the title of this blog, if not, let me explain. Medicine trials have been common in Teale's life, her whole life. Whether it was trying to control her constipation issues, her mood disorders, her seizures or one of the other many issues she is plagued by, medicine trials are often brutal on her and us. When you put a child with severe brain damage on a new medication, it is a trial. It is a trial because the body and brain chemistry is different in all people. How I react to a medication may be completely different than how you react. One example is that many people use Benedryl for an easy sleep aid, Benedryl wires me. I will lie awake with my brain unable to shut down if I take Benedryl close to bedtime. Teale's complication of brain damage changes how her body will react even more so. There are no statistics on how someone with her brain will react to the many medications out there. The studies that the FDA does are on typical non brain damaged people. Teale's most difficult medication trials have been surrounding her mood disorders. Medications that are supposed to help her feel more calm inside, have made her manic on more than one occasion. Ones that are supposed to help her sleep or have not listed insomnia as a side effect, have caused insomnia many times. There are multiply side effects listed with her most potent medications, but after a while, you basically ignore them because she never has the "typical" reaction anyway. Medication trials with Teale have not been done without much thought, discussion and research on Mark and my part. Over the years we have accepted that maybe this is the best Teale is going to be. Mark and I have accepted our crazy life in more ways than most probably realize. It is what it is and we do the best we can. Often, when thinking about doing a new medication trial, we look at how Teale is doing presently. Is she happy, is she sleeping well, is she basically manageable during awake times? If the answers are mostly yes, we probably won't try a new medication because too many times we have learned "it could always be worse." With every discussion we have with her doctors there is typically a new medication suggested, "that might be worth a try." Often I walk away from those appointments saying "let me talk it over with Mark and do some research." Sometimes I actually get the script filled, only to have it sit in our cupboard waiting for us to either conjure up the courage or be so desperate, that we give it to Teale. I have been jilted by these trials countless times. I have less confidence in her doctors than I did when I started on this journey. Not that they have let me down, just that I have learned that they too are just guessing when it comes to Teale's care. I have much more confidence in my abilities and gut instincts than I did when I first brought her home from the NICU. I have lost a certain innocence I used to have, when I thought doctors knew much more than I. I used to have faith her issues could be fixed by them, by medications and by interventions. I now look at Teale and know we have come far, but that we may never solve it all. This doesn't mean I have given up on her progression, or stopped hoping and researching help for her.  It is more of an acceptance that the roller coaster we ride with Teale may never smooth out completely. It is an acceptance that not everything can be solved or fixed. It is an acceptance that we and her doctors are human and have limitations. It is an acceptance that only God really knows the plan and the journey we are on, so with that I put my faith in His hands.

Filled with Hope and Fear, part nine...

Teale managed to calm and I talked her through the next steps we were going to take. Somehow I got her to Mark's cousins house to go to the bathroom before returning to the tent. At the tent I found Mark out cold, exhaustion had kicked in. Days filled with emotion and physical confrontations are the hardest of all. Everyday with Teale has conflict, it is her nature to try to control. But it is the days of raging often that really defeats us. I dressed Teale and was able to get her into bed fairly easily, explaining that I needed to go to the house to get myself ready. It was risky leaving her not yet asleep, she may rage again, which would set me back at the beginning of all I had gotten through. But I needed sleep badly also and a bathroom to remove my contacts. As I unzipped the tent I held my breath and prayed, hard! Teale was so exhausted from all her rages and the medications, I think she was thankful for her "bed" and had fallen asleep quickly. I came back to the tent, still wired with adrenaline. I read myself out with a flashlight and Marks strong arm around me, a simple gesture that gives me so much comfort. I always know he is there for me, both day and night he makes me feel loved and protected. I can feel his body relax as he pulls me close and I too finally drift off while saying my nightly prayer, "Thank you God for this man." Sleep renews and I am used to nights I just need to go to bed because the day must end. I will wake very early at home to be alone, have some time of peace just to myself. If I wake early here though my movement could wake Mark or Teale, so I will probably have to wait for them come morning. Gwenn slept in the house with her cousins, luckily Teale was too tired to notice or argue that one. When I did wake, it was not because it was morning though. Teale made a horrid noise, waking Mark and I with a start, it was like a gasping. She has sleep apnea, but we can not master the machine to help it as she won't keep the mask on.  This gasping was different, scary sounding, was a seizure coming? Her Epilepsy always happens in the night, only when her brain waves are in the sleep cycle do her seizures hit. I rolled out of Marks arm and was awake immediately, my adrenaline running again, watching her I was terrified. It was probably only a minute or two of gasping, but it felt like forever. Her seizures are never less than 45 minutes and we have never not had to ambulance her into the hospital for additional help. We have two medications, but after administering both of them, Teale is at risk for breathing distress. She settles, the gasping passes and I lay back down, trying to relax again. It must only be about 1:00 AM and I need much more sleep to get through tomorrow. Soon the light is coming through the tent and I realize we made it to morning without any more incidences. As I lay there awake listening to the breathing of both my sweet husband and daughter I feel refreshed and again hopeful that today will be better.

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!"