Changes & Blessings, part 4

And I did, I listened most of the night, I woke several times and I slept very little. She made it through without a glitch. I thanked God and our doctors as she walked out of her room the next morning. The "emergency medication" has worked well. We give her a form of valium before she goes to sleep on nights that her seizure threshold is being espially challenged. We now know some of the signs of her being in danger and the valium prevents the seizures when Teale is most venerable. We joke that the other person who needs a valium on these scary nights is me. But of course I need to stay alert and on my game, so I will not even have a glass of wine to settle my nerves on such nights. Mark doesn't or at least never has awoken when Teale is in a seizure in the middle of the night. It has always been my Mother instinct that has suddenly been startled awake to hear the awful sounds. That is one of the many things that I think about when I have been away from home overnight. I always ask Mark to keep the monitor close & to turn the volume up. I have been away from home alone very few times, but the needed breaks are often a catch 22, as the stress of being away is there too. I worry much too much. The day after the seizure was Saturday and all went relatively well. Teale was a bit grumpy and moody, as is often the case the day after a night we have given the valium. She seems unsettled, tired but won't rest. We get through the day and night falls again. I am anxious to get to bed, fatigue from worry and lack of sleep is hitting me hard as the evening comes. We decide to give the valium again as the medication levels have not had enough time to increase. We know this means the next day Teale again will be crabby, moody, tired, but we also know a seizure can be life threatening for a child like Teale. I sleep a bit better, mostly out of exhaustion, my body does what it needs. The monitor still a bit louder than usual, but I am less worried about another seizure coming. Teale wakes early on Sunday, anxious to get out of the house, Mark and she often hit the local grocery store on the weekends together. Mark likes grocery shopping and for the most part so does Teale. He is not gone long when I get a disturbing text "She fell over on someone. We are now upstairs sitting and having breakfast." I call Mark for details and my heart sinks as he describes Teale's strange unsteady behavior. The description sounds neurological to me and I decide to call her pediatricians office. While I gather information and talk to the doctors another text comes in from Mark. Teale has vomited at the store, another neurological sign. Mark now believes Teale is in small multiply seizures and we are quickly directed to get to the emergency room at the hospital. I begin to work out what to do with my daughter Gwenn who is just nine years old. My Mother in law also lives with us and needs care too. A whole day away would mean she would not eat or drink anything on her own. Her ability to take care of herself has declined badly, so I get in touch with Mark's brother asking for help. I need to get to the hospital also. Mark should not have to be alone, ER with Teale is a tough place to be. Teale has vomited on her clothes, she has nothing to keep her occupied while they wait and her behavior in such situations can be extremely challenging. I have already asked for prayers on my Facebook page and friends offer to take Gwenn. Beau is out but I reach him saying I may need help. My kids and I have a deal, no matter where they are, if Teale is in trouble, they want to know. One time Teale had a seizure at church, we had to call an ambulance and Beau was in Sunday school at the time. He just knew in his heart the ambulance was for Teale and he was upset that Mark and I had not pulled him from Sunday school to let him know. So as I spoke calmly to Beau, hoping this was nothing, I knew his fear was probably high also. Uncertainty, it is our life, but in these times it is heightened. Soon after Mark gets to emergency, Teale vomits again, this time all over her treasured American Girl Doll catalogue. She goes into a rage, it is covered with vomit and Mark has to throw out the catalogue. The rage itself is not her normal kind of rage, causing Mark more alarm. Mark asks me to try and locate another catalogue, so  I throw the request on my Facebook page, knowing my dear friends will find me one if at all humanly possible. If there is one thing I have learned through the use of social media is how much people care about my family. It is an amazing thing and it reaches far and wide. I am often overwhelmed by the support and love we receive, both publicly and privately. I have had many relationships forged because I am so open and honest about our struggles. People may not be as willing or as able to share their challenges, but they have told me that they appreciate my sharing our life. It is not always pretty, there are things I have shared that others may find appalling. But it is almost like my calling in this life with Teale. I feel like her life, our lives with her, teach much. It was not very many years ago that you would not have seen a kid like Teale in the community. You would not have know the families pains, joys and challenges raising a child with multiple issues. So sharing our journey both in this blog and on Facebook has been somewhat therapeutic for me. It connects me to people like me and it teaches people who otherwise would not understand. The offers come in on my Facebook page and privately texted to my cell also, many are trying to find me an American Girl catalogue to take to Teale at the hospital. Moments like these that may not mean all that much in an everyday life, but I see the amazing love of those who want to help my daughter. ~to be continued

Something to think about...

Changes & Blessings, part 3

Mark gets home and I feel much relief. He is home not only for the night, but for the weekend and The Presidents Day Holiday on Monday. If we get through the next few days without a seizure, her medication level will have increased and hopefully with that, she will then again be seizure free. It has been almost two years since Teale's last seizure and even that was a fluke. It was a horrid mistake, I mostly blame on myself. I manage medications, I get the prescriptions filled, refilled and the weekly pill boxes supplied with what current medications Teale is on. When I filled Teale's weekly boxes that week, almost two years ago, there was only enough of her seizure medication to fill a few days. I filled the rest of the weeks medications anyway, figuring when I picked up the seizure medicine I would add it to the other pills in the box. I had done this same thing several times and it had always been ok. Well, there was not another refill on the seizure medication bottle that week, the doctor didn't get back to the pharmacists in a timely manor, life got me and I forgot. Also we had help for Teale in the house often back then, so between Mark, myself and the respite help, one of us gave Teale her her medications out of the boxes I had filled. The trust was that I had filled correctly, so double checking the handful of pills being dispensed was uncommon. Often it was a tough thing to get Teale to take the pills, so the focus was on her cooperation, not on what was being given. Somehow we all missed that the seizure medicine was not in the several pills we were dispensing to Teale. I woke in the middle of the night to Teale seizing and it hit me that I had never picked up the medication and filled it into the rest of the weekly pill boxes. She had missed at least two doses and maybe it was three. The guilt of that still haunts me. She had been seizure free awhile at that point and I blew it. It was horribly unresponsible of me, my daughter counts on me and depends on me and I caused that seizure. But that was almost two years ago and as a result I have changed how I fill medicine boxes and we double check what we are giving. I may fill without having a whole weeks supply still, but now I write it down on our weekly calendar when the particular prescription must be picked up by. Filling the weekly boxes is a big job, her medications are constantly in flux and it has had a certain fear to it since that mistake. There are medications we "play" with depending on how she is doing. We have full doctor permission to change some things on our own as needed. Then there are the ones that are a constant and must remain stable, given to her at approximately the same times daily to ensure the best consistent levels of the medication in her blood. Teale has blood draws often to check these levels, that is how we knew her seizure medication was slightly low when I talked to the doctor about the day seizure. Because of it being slightly low, we raised the medication by 50mg. A very slight increase if you consider she is on 500mg two times a day. But the hope was that it would be just enough to stop the seizures. I already added the increased dose to her boxes, knowing after a week on this dose we were to increase another 50mg. The evening went as usual that night, dinner, Teale's nightly car ride with her Dad, TV, take her medications, pj's, stories, etc. As we put the girls to bed I double checked the monitor in their room, praying it would wake me if God forbid she go into one of her grand mals in her sleep. The stress of a child seizing is huge for any parent who lives with a child diagnosed with Epilepsy. It is a horrid thing to watch your child in, for me I believe it is mostly the lack of control. I can not control seizures, I can not make them stop when they are happening and I hate that. I have to watch it played out, worked through, as it may be. Teale doesn't seize for seconds or minutes, she has seized an hour and a half. The shortest on record grand mal for Teale has been about thirty five minutes. Imagine watching your child seize for that long, not knowing when or if it will stop. If the emergency medications do not work at home within fifteen minutes, (every time so far, they have not) we call 911. It is wretched as we wait for the ambulance crew to come and take Teale. Always it has been the middle of the night, always I am startled awake by a sound that isn't quite right, running to her room to find her seizing. Vomiting and loss of continence accompany the seizure. The fear she will choke on her own vomit in her sleep, the fear I will not awake to hear my daughter in trouble. These are stresses I live with. This is one of those things that when someone says to me "everyone has problems" that I think about. Do you live with a constant fear of the loss of your child in their sleep? My sleep is sporadic, I sleep in fear often, I wake in fear too. Did I not wake in the night and she had a seizure and choked to death? These are real thoughts I have, this is how I feel. When Teale sleeps in, when she sleeps later than her usual, I listen to the monitor for her breathing. If I can not hear it, my heart jumps, panic may set in, I start to question if I slept too hard. I can't tell you how few times Teale has slept late in her life, but each time both Mark and I were scared to open her door. We were scared to wake her if she was just sleeping and we were scared at what else we may find too. Teale has cheated death many times, at birth and several times since. She is my miracle child, who I have put much effort into. I refuse to lose her to a seizure. As I go to bed that night, I know I will not sleep well. I know I will keep the monitor a little louder. I know I will wake often and reach for it to listen to the sweet sound of her breathing...~to be continued...

Changes & Blessings, part 2

Teale comes off the bus at 3:00pm and her first words are "I wet and the teacher is mad at me." Her "reading" people can be very off. I'm sure her teacher was concerned, not mad, but with profound hearing loss, she often misses much when reading people's feelings. She obsesses on the fact that she wet, she doesn't have accidents and I can see this confuses and upsets her. Teale can't understand that she had a seizure and that is why it happened. I realize I may never be able to explain this to her. As she takes her wet clothes out of her backpack to show me, I just try to tell her "it's ok, you didn't mean to, you couldn't help it," anything to help her. Times like this make me sad, she understands it was "wrong" but she just can't get that she had no control. Hopefully she will move on, but I know Teale and she is sure to bring it up again when her Dad gets home. We do her afternoon medicines and I remind her there will be no school all the next week, this will distract her. She squeals with delight, a wicked high pitch, very loud squeal and clapping like a toddler. I often feel like that it just what Teale has been stuck in developmentally for years, she is much like a big toddler. After school Teale often settles into snack, TV, computer or drawing. She obsesses on the same things, but slightly rotates them. The usuals are Justin Bieber, a movie of some sort, coloring or cutting up paper, she loves to go shopping of any kind and or she carries around a certain doll or stuffed animal. Right now it is the American Girl catalogue she has been stuck on. She asks where her  catalogue is because she left it at home during school. My mind immediately races, hoping I find it easily, so no meltdown occurs. This is one of the issues of a child like Teale, she gets obsessive about a "thing" and if you can't find where the "thing" is fast enough, you are in huge trouble! I can't begin to tell you how many nights we have been woken with her flipping out because the catalogue, doll, stuffed animal, whatever, has gone missing in her sleep! This is a constant fear we live in, a favorite "thing" getting lost or broken can create total havoc in our lives. As we find the catalogue on the couch easily, Teale settles down to look through it. Teale loves holidays and or the anticipation of the holidays more than any other person I know. She talks about her Birthday coming from the moment it ends, every year. Right now she is  stuck on what doll she wants, flipping the pages over and over again and asking me "For my Birthday?" I leave her looking and go to the kitchen, I have more phone calls to make. Mark wants to know how Teale is, the doctors are still talking about a plan for tonight, I need to get dinner ready and Gwenn walks in the door from school. Mark's Mom lives with us and I need to wake her from her nap and take care of her too. Our life is full, we are busy, but who isn't? Taking care of people is a major part of me, I've been doing it for many years. I was a nanny when I was young and then I opened an in home day care. Mark joined me in the daycare business shortly after we were married and we ran it for over fifteen years together. My children, but especially Teale, have taught me the most about care taking. Now with Mark's Mom living here, I have learned much about geriatric care too. Working with doctors has become a very important part of my life, I have learned to be strong in my beliefs for the needs of the person I am advocating for. I don't back down easily when I believe something, but have also learned to work with the team of doctors in my family's life. The nurse gives me the doctors advice and thoughts on the seizure Teale had that day and we discuss ideas for making it through the night again. I deal with many calls because there is much back and forth between the nurses relaying information and then getting back to me after talking to the doctor. I have somewhat gotten used to this, first I talk something over with the nurse, then she takes my information back to the doctor, then the nurse calls me back with ideas from the doctor. I may counter with my own thoughts and it may take another call or two. Today is has taken at least four calls back and forth. In the end we decide to increase her daily seizure medicine slightly and add a preventative medicine at night. Most likely just for this night, but we have used it before and may need it a couple of nights, to be safe. It is a form of valium and it helps Teale to not go into a seizure at night. Her seizure threshold is higher while she sleeps (her brain going into the sleep cycle is part of her Epilepsy) and especially when she is sick. Our seizure plan has been to give her a valium before bed, if she is sick. She has one common factor in her seizure disorder, sickness brings down her threshold considerably. So although she is not sick, with the brief day seizure, we will give her the valium tonight. I feel fairly confident in this plan and pray for the best. Mark will be home soon, at least now I have something to tell him.  Teale sits nearby me flipping through her American Girl catalogue and asking when her Dad will be home. It is all so surreal, she has no clue what is going on with her or how much I worry about her.   ~to be continued....

Changes & Blessings

Last Friday I received a call from Teale's school. The nurses voice said "Everything is fine, Teale had a brief seizure." My heart dropped, "What happened?" She went on to describe the seizure; brief, staring, eye movements and a total loss of continence. "She came out of it on her own and has been changed, she seems ok." "Do you want me to come for her?" I asked, half in shock. Teale had never had a seizure at her new school. Basically Teale doesn't have day seizures, period. Her seizures are nocturnal and extremely long, an hour is common.  So this was "different" and in the seizure world, different is scary. Changing seizures can be very alarming, it can mean many things. I know a couple families who lost love ones because the seizure disorder changed suddenly and the medical community could not help get the seizure under control. One of our friends in our church lost his daughter when she was just thirteen years old. This was before we were friends, but he has told me the story. Puberty can wreak havoc on on a child's body, changing seizures for the better or for the worst, as all those hormones course through the body. Fear rushed through me as I couldn't help but think of my friend's daughter and the extreme pain they must have experienced losing her. He often looks at me in church with the most compassion and a hug from him is not just a hug, it is a bond, he understands. Many people in times of crisis are very kind to us, but those who live or have lived this kind of a life, there is a connection like no other. Back to the story. I was glad when the nurse said that they were comfortable keeping Teale. I knew my afternoon was full and now I would be on the phone much to Teale's doctors discussing this latest change. My first call was to Mark, who didn't answer, so I left a message, trying to not sound alarmed, but knowing my heart was heavy. When Mark called me back, I broke the bad news. The February break would be starting the next day, which made things both good and bad. I would be able to keep an eye on Teale, but a big seizure may be coming. The nocturnal seizures cause Teale many issues. We have had weeks after one of her big seizures that she is "very off." She is exhausted from the experience for days and often also very violent. There is more understanding since even nine years ago when this all started in our life with Teale. Doctors now understand that the electronic brain waves get "scrambled" in a huge seizure and can take time to get back to normal. During the week that follows a seizure, Teale is often very tough. So all this goes through my head as I think about the school break coming and wonder what is around the corner for us. Mark and I share a saying, "She keeps life interesting." As I hang up with Mark, he says that to me. I contemplate this, interesting life, that is for sure. The next calls are to doctors. We have a phenomenal relationship with our pediatrician, so I text him. The next few hours I will spend working between the neurology office and the pediatrician office, trying to come up with a plan to make it through the night. We decide to increase Teale's seizure medicine very slightly, as her blood draw level a  week  earlier had been a bit low. I feel a tad of relief that this may be a reason she had the day seizure. The thing is, as is everything with Teale's seizure disorder, we will probably never really know why this happened to her. Her increased weight from the anti psychotic could be a cause for many reasons. Her weight has caused her sleep apnea to be worse, sleep deprivation causes seizures. Her increased weight naturally decreases her medication level, so does she need more as her weight increases? The teen age hormones changing her body could also be the cause. The doctor we had for many years in neurology had retired last spring, so we were working with a new doctor. I had loved our old neurologist, an older man straight from Italy. Years earlier we had taken Teale to John Hopkins Hospital. Her seizure disorder was very concerning and we were actually considering the operation that would remove the part of her brain that was seizing. Mark's cousin is a very promenade doctor who works at John Hopkins. He had helped us get Teale evaluated there. While we were there, the doctors had recommended the doctor in Rochester that we had for the last 9 or so years. He was compassionate and he understood that his "part" in Teale's medical care, was just that, part of the whole picture. He treated Mark and I with respect and as a vital part of her caring team. I was not getting the same vibes from the new neurologist Teale was put in the care of. The attitude was more of a "my specialty" is the most important and the only issue we should be concentrating on. Working with a doctor who didn't get the intricacies of my daughter would not work for me. Teale's seizure disorder is a part of Teale, not the whole of Teale. We live with her and her mood disorders are the most challenging part of her, something the new neurologist has yet to understand. The hard work of building a new relationship with a new neurologist added to my stress. "She sure keeps life interesting." ~to be continued....

Valentine's Day

I woke way too early this morning, hoping I could curl back into Mark's arms and fall back asleep, but my mind raced. I started thinking about what I need to do, what I want to do and what I wish to do today. It's Valentine's Day and my husband Mark took the day off to spend with me. Time is truly the gift I appreciate most in our busy life and today we will give that to each other. We have had twenty three Valentine's Days together, I remember some, but not all of them. We were engaged on Valentine's Day, so I remember our first Valentine's Day well. I remember memorable times we have spent together, like the inn not far from home that we stayed in for a Valentine's Day get away. I remember last year (& probably always will) because Mark surprised me with a trip to see my lifelong girlfriend in Texas. I never saw that one coming, so when I opened the sheet of paper with my plane reservation on it, I fell completely apart. You see, Mark is not great at holidays, I know he will agree and not be hurt by my sharing this truth. I could analyze this to death; his family didn't put any importance on holidays like my family did, he sees holidays as just another day, he's a guy? Who knows why, but Mark has "blown" many holidays in our twenty four years together. He has missed big ones and small ones alike. His planning is poor and often he is running out last minute to get a gift or a card. Sometimes he just "forgets" altogether and I have felt hurt by his "forgetting." That is probably why last years gift blew me away, he planned it out so well. He called my girlfriend, he arranged dates with her, he took days off of work to be home while I was away, he bought the ticket and knew he would be on his own with our challenging family while I was enjoying time with my friend. The amount of planning was impressive and the gift was thoughtful and caring. Mark had truly "gotten me" with that one and he knew it. When Mark went back to college in his early forties, he took a class on interpersonal relationships. He was assigned a paper to write about himself, something that he had needed to improve on and the action he had taken to improve this about himself. He came home from class and shared the assignment with me, saying that the only idea he had was how he often "failed" at holidays. The problem was, it was supposed to be something that you had already improved about yourself and he knew he had not. There were times Mark was thoughtful and planned for holidays, but it was very inconsistent. I think that is partially how "day dates" began, I was much less apt to be disappointed if time was given to me. We could plan a day trip, a breakfast or a lunch out, my expectations were less, because the time I was given was more. We all have things in our marriages, in our relationships we wish to change about the other person, but sometimes it is more important for us to switch our way of thinking. As our relationship has matured (as in aged!) we need less material things and appreciate the friendship even more. Maya Angelo once said, "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." What Mark has done over the years on holidays is mostly vague, memories of gifts are scattered in the confounds of my mind and throughout our home. What is more important is the way he makes me feel, day in and day out I feel loved. Happy Valentine's Day Mark, thank you for the love.

My Husband is Puerto Rican

Have you ever been in a situation where you suddenly find out the person you are with is not who you thought they were? A friend of mine while we were driving through the city, said "Lock your door, this is the Puerto Rican section." My response, "Did you know my husband is Puerto Rican?" She laughed, not just a little, but a lot. There are pictures of my husband on my blog, you can see why she thought I was kidding, but I wasn't. Mark is about 6'5" on a good day, he may be shrinking with age so his height seems to vary now! He is pale and a strawberry blond with green eyes that change color often between a greener green and a blueish green. His shoulders are broad, which is good because he carries much weight on them. His look may not be of a stereotypical Puerto Rican, but his heritage is. Mark's Grandfather came here as a young man to build a better life for himself. He was always thought to be about sixteen years old in the stories passed down, but recently the family has discovered he may have been even younger. Papa, as Mark's family called him, came with a group of boys and worked hard for themselves and their family back in Puerto Rico. Fast forward one hundred plus years, his family has thrived. Mark's Mom has four siblings, three of which have gone to college, pursuing higher education was important to Papa. The youngest sibling, who did not attend college formally,  is diagnosed with developmental disabilities that prevented him from pursuing higher education. He, Uncle Steve, lived with his Mother and Father, protected from the outside world in a small upstate town. Papa's wife, Mark's Grandmother, died when Uncle Steve was a young man. I believe he was only sixteen years of age. So Papa and Steve took care of each other until Papa's passing in the late 1980's. At which time Uncle Steve moved in with his big sister, Mark's Mom. At the time Mark was living at home and attending the local community college. So to keep Uncle Steve occupied, he tagged along with Mark to college most days. There he was included in classes or because he is a talented pianist, he'd would play piano in one of the rehearsal rooms. That is one of the many stories about Mark that made me fall for him. Here he was, attending a college, having fun as a young adult, but thought nothing of having Uncle Steve tag along. Now remember this was LONG before our daughter Teale was born with severe brain damage and developmental disabilities as a result. Mark has truly, always had a good heart and a sense of all people are deserving of respect. I still love the image of Mark in class, Uncle Steve by his side and the camaraderie that Uncle Steve and he shared. A man who had been protected, somewhat isolated from the big world, but Mark chose to welcome him into his life, exposing him to much. I love this about Mark, his pushing Uncle Steve to step outside his protected world, giving him an experience we often still talk about. It is like the good old days stories, when Uncle Steve went to college with his nephew. By the way, I met Mark and Uncle Steve during this time. Mark and I met on a local co-ed recreational softball league. Mark brought Uncle Steve to the games and he became part of our team. (to read more about our meeting   http://wearegodsentertainment.blogspot.com/2011/07/mark.html)  So, the long story short, Mark is one quarter Puerto Rican. Looking at him you probably would not guess it, but I have found myself in many interesting positions because of our looks. Many people seem to assume Mark and I are "just typical Caucasians." They have said things to us like I experienced in the car that day. I know Beau has won many bets when people doubt his Puerto Rican heritage. When Beau was in elementary school they had International Day. All the kids dress up in a costume of their heritage, Beau picked Puerto Rican. The kids marched in a parade behind the sign of where they were from. Beau, my blond haired, blue eyed son, marched with one other girl behind Puerto Rico. I was in the hallway watching the parade when he came by and could hear many people say "How is Beau Bradley Puerto Rican?" Many also asked me directly, but even then they questioned what I told them, that my husband is Puerto Rican. Yes, my husband really is Puerto Rican, so maybe our family is just one more example of  it's best to"Not judge a book by it's cover!"