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Tuesday, August 30, 2011

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.

Thursday, August 25, 2011

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~

Wednesday, August 24, 2011

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~

Tuesday, August 23, 2011

Filled with Hope and Fear, part two...

And so the drive began. Gwenn our eight year old made a fort in the way back of the conversion van we bought just for Teale. She is able to hide under her blanket, watching a movie on her personal DVD player and probably she is pretending her life isn't as crazy as it is. Gwenn takes all of Teale's behaviors in stride, Mark and I do our best to protect her and our son Beau. It is tough though, Teale can embarrass us all in public or when one of them has a friend over and she explodes. We are all deeply effected by Teale, we all have learned strategies to deal with her and try not to set her off. Beau isn't on this trip, varsity high school soccer try outs have us leaving him behind. This breaks my heart, as he and I are close and often he helps me laugh when I want to cry. Beau uses humor a lot in our life with Teale. He imitates Teale and if she is in the right mood, even she will laugh at his impersonations of her angry. The van is big and gives us the needed space we couldn't do without at times. This is one of those times I am thankful for the big red van. Often these days it sits in our driveway, Mark would like to sell it, I'm not so anxious to do that. Teale has taken over the front passenger seat, she sits there now, me in the back. I no longer sit next to my husband and have those long drive, intimate conversations. This is something I miss deeply, but as is life with Teale, I concede to her desires often, saving my energy for when there are bigger battles to fight. In the middle seat of the van I can help everyone. I am the gopher of the trip getting drinks for Mark ahead of me or Gwenn behind me. I work hard the whole drive to keep peace by listening to Teale and being alert to any rising issues. She is on her personal CD player, headphones in, listening to Justin Bieber as we begin the drive. The fit we just experienced still fresh in our minds, fear still wrecking me as we pull out of the driveway. I text friends, people who care and get my life. Texting my friends who have an explosive kid or ones who just love me. I am needing to feel connected to the outside and feel some of that love. The raging wipes me, I'm scared but try not to focus on that. Teale has been "off" all week, vomiting one day, not sleeping at all one night, raging often. We had a blood draw done last Sunday, fearful she was in a Lithium toxicity because of unusual vomiting. It wasn't like she was sick, no fever and no consistency to the illness. She woke up vomiting, wandering the house as she left vomit behind. She doesn't have much concept of where to vomit. She walked to get away from it, like she was trying to find comfort in another room. Me literally catching it in my hands. She was then fine again, wanting to eat and drink, I was wary, but she is tough to stop in such situations. So for hours she was fine, but her comfort was missing, she seemed to be trying to feel better by trying many places and activities to help her feel better. Out on her hammock swing, she did it again, covering herself and her coveted CD player in vomit. The blood draw the next morning showed elevated thyroid levels, warranting calls from both her psychiatrist and pediatrician on Sunday afternoon. A repeat blood draw with more testing would be done on Tuesday. This one would confirm the issue and another blood draw to gather more information for her newest doctor, an endocrinologist, would be done on Thursday. Life with Teale. Just when we think her medical issues are all figured out, not solved mind you, but at least managed, something new gets thrown our way. The Thursday blood draw was looking for more information as to why her thyroid is running high, but results are still not in. The thyroid running high may be causing this increased mania though, so we are anxious for the information and a plan. As the five and a half hour drive begins, I'm texting friends, Teale is listening to Justin, (or Yustin, is how her hearing impaired ears hear it) Gwenn is watching a movie in her fort and Mark is driving. Mark and I are  both tossing the fit around in our head, trying to make sense out of something we can't make sense out of. We talk, but are careful as to what we say, Teale is astute to our discussing what is going on with her. We know this trip is a huge chance, but it is what both girls cling to for months. This vacation often gets us through as the long winter takes over in Upstate NY. We will remember the fun we had, talking about the family, the tubing, water skiing, the music and the laughter, but as we drive, all I cling to is getting there safely... ~to be continued~

Monday, August 22, 2011

Filled with Hope & Fear

We had planned on leaving Thursday morning and spending the day at the ocean. Not telling Teale plans too early is normal in our life, as things change and flexible, she is not. The weather looked cool on the coast and her behavior had been escalating. So we delayed the trip by a day, deciding to leave Friday and skip the ocean day. She had seen the suitcase and taken me to it a day before, asking "You are not going to respite?" Her sentences are often worded backwards and she forms them the way she wants you to answer. No Teale I'm not going to respite, I'm just cleaning up some stuff, had been my answer, knowing telling her anything too soon could cause issues. Mark decided to tell Teale Friday morning, as the time was getting near, that we were heading on her favorite trip of the year. We were packing for Uncle Richie & Aunt Jackie's where all her cousins, aunts and uncles on Mark's side would gather for much fun. She was really excited and cooperating at first to get ready, but then it all went down hill. With much left to do, she insisted on starting the van we were packing and sitting in it to wait. Yes, she knows how to start cars, Mark taught her that one, God and Mark only know why! Anyway, we are packing the van from behind, exhaust smoke blowing into my face, I start to feel nauseous and my head hurt. Being a migraine sufferer, I knew I couldn't afford to go into a migraine. The last thing I want to feel is sick on an almost six hour car ride. I explain my reasons in "Teale language" and turn off the van. Teale immediately explodes, wanting the van on while she sits in it. Now mind you, it wasn't hot out, the air conditioning didn't need to be on while she sat there. She was listening to her personal CD player, which runs on batteries, so no need to have the van on for entertainment. But she is Teale and reasoning often doesn't work, so she explodes! She starts throwing things out of the van, kicking at the controls, yelling and going for me. Teale has NO FILTER in these situations, her anger goes off and she is out for blood. At this point taller and weighing more than me, the only thing I have is my wit. I often need to use my strength and my knowledge to get through these fits without being severely hurt. Now the packing has stopped and we are "waiting her out." Mark has taken her from the van and she is raging in the front yard. We tend to try and get her to a safe place where she can't throw things and we are safe to just guard her until the wave of anger stops. Sometimes we are forced to hold her to keep her safe, but this is tough for even my six foot four inch husband, much less for me. She is screaming about wanting this or that, the neighbors know Teale's explosions too well and leave us to deal with her, knowing she will eventually calm. Often, at this point, the reason that caused the blow up is no longer even on her mind. She is so focused on her anger, she has no idea why it started. Brain damage, mood disorders, bi polar, intermittent explosive disorder or because she is developmentally delayed, all these issues cause the unregulated behavior and it is anyone's guess when the rages will start. Packing is stalled and even though this is what she wants the most, we are no longer moving toward leaving for the trip. Frustrating beyond words, we are forced to stop and deal with her. A six hour drive ahead of us and a raging child, my fears are high. We have medications to help Teale in bad rages, but the side effects are often not worth it, so we use such meds sparingly. This though, would be a time to use them, having her calmer or even knocked out, so we can safely drive to MA, seemed like our only choice. Strangely she takes the medicine fairly easily, so now we wait for it to start to work. Teale's psychiatrist and us have a very close relationship. He has trusted our judgement much over the years and we have a lot of flexibility in our choices of medications he has prescribed. The problem is that contrary to what the outsider may think, there is no magic cure. We regulate Teale with the help of her medical team, the best we can, but it is never perfect. The medications we have to help calm her are strong and coming off of them can be worse than the rages. We chose to take this chance because being stuck in a van with Teale raging is a nightmare. All this, for two and a half days with family in a beautiful, fun setting in MA. Our hope is that once there, Teale will be better with the excitement and fun of family and activities. ~to be continued~

Tuesday, August 9, 2011

A Needed Break

I should be packing but writing is so much easier and I am such a procrastinator! We were lucky enough to get Teale into the local Rotary overnight camp this week. It is especially nice for us, as it is Mark and my 22 Wedding Anniversary on Friday. Teale is staying at Camp Haccamo for four nights, giving the rest of us a bit of a breather. Please don't get me wrong, I LOVE Teale, but her everyday care is sometimes daunting. Teale is oppositional defiant, among other disabilities and mental illnesses. She argues, much, she controls much, she wears us down, much. Getting her medicines in her, getting her dressed, getting her  bathed, hair and teeth brushed, all can be tough, daily. It is a rare occasion that any of these daily needs go easily and smoothly! Taking a break from the challenges helps us all, it is a renewal. It breaks bad cycles of arguing that we have fallen into, by having someone else care for her. She comes home more independent and more confident in her abilities to do things herself and "survive" without us. Camp also teaches us, her family, to trust and let go. Teale needs us, but we also need to know she will be ok if we are no longer here. My biggest fears are when Mark and I are no longer able to care for Teale. Whether that is because we are too old or dead, her not having Mark and I scares me more than words could ever say. She is such a huge part of me, of us. I trust Mark and I, but the rest of the world, that is tough to do with a kid like Teale. She is so vulnerable, she could so easy be taken advantage of and unspeakable things go through my head when she is not in my care. The problem is I HAVE TO TRUST, we can't do this 24/7. Mark and I need the breaks to regroup, to build energy and to forge through her many needs, once again. So as I procrastinate packing up Gwenn, Beau, Mark and I for a little trip alone as a four family, my mind constantly thinks about my Teale. I wonder if she is happy and safe? I wonder if she feels abandoned by us? We will steal a bit of time away, time without the glitches of life with Teale. We will enjoy and build memories we can reflect on when the tough times hit again. Tough times with Teale come in waves, they are not constant but they are always just around the corner. We are constantly on our guard, wondering when the next shoe will drop.  So today I will enjoy life without the challenges of being Teale's Mom. Today I will enjoy Beau, Gwenn and Mark just a little bit more. Thank you Rotary for this gift, you will probably never know how much it means to us! And when Teale comes back, I will again have the strength to continue caring for her, thanks to your generous giving of time and money.

Friday, August 5, 2011

Little Beau

I've been reminiscing a lot about Beau and his growing up. Next week he will turn sixteen, adding driving to his abilities, which seems almost unimaginable. Where did that sweet baby go, the one that never cried and was so easy to be the Mother of? How simply adorable he was, with his kind eyes watching the world around him, trusting in the adults who held him. Bringing him home from the hospital, after his brief stay at the NICU, was more joyous than I could have known. I was his Mother, I was his Mother, somehow that would take much time to sink in. Mark and I had cared for many babies and children over our six years together at that time. We had married in 1989 and ran in home day care together, giving birth to Beau on August 15, 1995, just three days after our sixth wedding anniversary. I would joke that "no one came for him" at the end of our long work day. I had cared for so many children, loving them, only to have them grow up, move away, lose track of us and sadly, even forget our intense bond. All day we would play and at the end of the day their parents would take them home, only to return the next morning. Often we spent more time with these kids than their parents did, so I felt blessed Mark and I would both raise our kids together in the daycare. The memories of the many children I loved are so deeply imbedded in my mind. Yet I know many of them have no memories of their time with us. So when Beau came into Mark and my life, it was almost as if I needed time to truly "get" this one was mine. He and I have a relationship that changes with each stage of his life. As a baby, I could sit for hours looking at his beautiful face, soaking up the love from him and giving mine. As a toddler, he was a handful, always on the go, I felt like I was the right Mom for him. My friends and family would often be overly worried about his climbing and activity. I encouraged his curiosity, loving his spunk. He was climbing trees, play houses, swing sets, anything he could, at a young age, seemingly loving the thrill and the height. I learned to turn the other cheek, letting him be who he was and trusting he could do it. There were times I'm sure my heart skipped a beat or two, but I didn't show it and he never got severely hurt. There was the time I was gardening with him near me in the sandbox, Mark was out, golfing I believe. When Mark came home he asked where Beau was, looking over, he was no longer in the sandbox. He was an independent two year old, probably he had gone to grab his pirates to play with in the sand. Hearing his voice from above us, we looked up and there he stood on our porch overhang. It is a low roof that covers our back porch, windows from both our dinning room and our kitchen go out onto it. At two years old, Beau thought it would be fun to go out the window onto it, while I was not watching. Mark and my heart stopped as we thought out getting to him without alarming him into going toward the edge. I knew I was in trouble with Mark, his son was on the roof while in my care! We have told that story many times, as it epitomizes Beau as a youngster. We got him to come through the window safely but he was mad about our concern. He would soon be on the roof again or up high in a tree. His need for heights seemed insatiable. The other story we often tell was while we were vacationing on Cape Cod. We had gone to a concert outside and there were these poles, like telephone poles, in various heights near each other, the shortest being at least eight feet high, the tallest, twelve feet. I was watching the band with Beau by my side, Mark must have been holding Teale. Beau couldn't see well enough, so he shimmied up the pole, standing at the top. At the time he was four years old and by then I was very used to his climbing. I barely took notice as he danced at the top. A woman near me, asked if that was my son, as I looked up at him ecstatic to be up high, I told her yes. She was appalled I was allowing him to be up there and felt it was her right to tell me how dangerous that was and that he should come down. Listening to her rage at me, all I could think was "thank God he got me as his Mother and not you." I trusted him and as he enjoyed his birds eye view of the concert, it made me smile to see him so happy. Beau was a handful as a young boy but Mark and I encourage kids to be themselves and to enjoy life. Because of this our children are free spirits. Often I joke that we are not good parents, but the reality is, I think we are the parents they each need us to be. Beau was my first, he was amazingly sweet and curious. His play was imaginative and active, he never just sat and colored or drew pictures, preferring physical play always. He would play pirates with swords. His "set ups" with his action figures, pirates and knight Play Mobile figures would entertain him for hours. One of his favorite activities was making "spider webs" throughout the house, winding balls of yarn all over and through things, pretending to be a spider or maybe it was "Spiderman." The intricate webs that we could not get through, he would then cut apart, leaving yarn everywhere. I often look back on Beau's younger days, thinking how innocent, carefree, fun and loving they were. Next week he will be sixteen and the world opens up to him in a whole other way. I miss my "little Beau" the one with the pirates in hand, climbing the highest tree he can find, but the young man he has become makes me proud.

Wednesday, August 3, 2011

Happy Anniversary ~part 3~

The nurses came daily and as the shots pumped ACTH into Teale's tiny body, one issue was solved. Her appetite was so huge, Teale finally started eating baby foods regularly. Her iron level in her blood rose and she was no longer anemic. The problem was, her appetite became insatiable and she developed a love for mashed potatoes. Not a healthy choice, but it was cheaper than baby food, easy and the only thing she would eat. She became demanding, turning away all other foods. She still didn't eat many textures, Teale was very sensory defensive from the start. Her sweet little body and face chunked up, the steroid was working on the infantile spasms, but the side effects were just awful. Teale was irritable constantly, never satisfied or comfortable, she hardly slept at all. She had been a fairly needy baby before the shots and oral medicine, but now she was really tough. Her therapists who saw her go from one baby to the next in a matter of weeks were deeply concerned. They worried about Mark and I, as Teale's demands were so incredibly wearing. The team suggested a visit to the developmental pediatrician, with them by our side to help support us. The appointment was scheduled and two of Teale's therapists came with me. The doctor had hardly walked in the room when he made the decision that Teale needed valium to help her. He was empathetic with barely a word from me, I was shot and he knew it. This was an amazing experience for me, a doctor showing me care and his acknowledging our road has been tough. The lack of sleep had made me fragile, I had been trying to keep up with Teale's demands of nursing constantly for comfort. I was her safety, but I was helpless in my ability to take her discomfort away. It was hard on me, Teale's future was so questionable, the infantile spasms were so mysterious. I know I waffled much in my relationship with God at that time, why Teale, why one more thing? I believe we continued the oral seizure medicine and the ACTH shots until sometime in late November. The valium had helped taken Teale's edge off, but she was still acting starved and needy 24/7. In her Christmas picture that year she had a huge face, Beau thought it was cute, I saw it as a constant reminder of all her intense issues. Just looking at her "blown up face" could bring me to tears. Those months were incredible, some of the worst in memory for Mark. I think I was just so caught up in Teale's needs, I have mostly forgotten the details. The infantile spasms were rechecked and they had stopped, giving us our baby back as we weaned her from the medicine. The threat of the seizures returning and of many other future problems didn't make this a time of complete celebration. But we had gotten through it and our hopes were high. She shed the weight and now her worst irritable times seemed easy. Funny how that fable "It Could Always Be Worse" weaves it's way into our life. I think I have learned that lesson many times over now. Just when I think I have hit "the worst" something else comes along. When people say "God only gives you what you can handle" I have wanted to scream, I just don't get that saying. What exactly does that mean, He trust me with lots of challenges and I should be proud of that? The other one that makes me crazy "God knew what he was doing giving Teale to Mark and you." Somehow I don't totally believe that is true. I guess in the long run I question God purposely handing people hardships. I think we got Teale because she was meant to be with us, but all the stuff that she has gone through, all the stuff we have gone through? I guess if I thought God was doing this to us, I would be angry. As I live this experience, trying to do what is right for my daughter and my family, I put a lot of trust in God helping me through it. I don't believe He is dumping it on me. So as Mark and I are about to celebrate our twenty second Wedding Anniversary, I remember our tenth with mixed emotions, knowing we have come far, but still worrying about what our future holds...

Happy Anniversary ~continued~

Our pediatrician was not pushing for us to come home ASAP, but those last couple of days were hard to enjoy completely and relax. He told us to watch Teale carefully and if we were concerned at all, take Teale to the local hospital on the Cape. Driving home had a dread to it, what would we find out about our daughter when we got there? The EGG was set up within the first few days home, but the urgency was not as great as I thought it would be, so my concern lessened also. The testing got done and we were told the doctors would read the results and get back to us. Meanwhile we ran our in home daycare and lived life. It would be at least a few days before we would hear from Neurology. A traveling Monet art exhibit was on display in a big city near us that I really wanted to see. It was an hour and a half drive each way, but I had been a Monet lover since my early teens. My teenage niece was also interested in going with me. I figured I would have to take Teale as she was still nursing at nine months almost exclusively and between the drive, the wait in line and seeing the exhibit, it would be a good part of the day. My niece, Jessica was 15 years old, not yet driving, but helpful on the long car ride, entertaining Teale and helping her if she needed something. Besides that, it would be fun to share this experience together and I appreciated the company in the car. We got the the museum and stood in a very long line, honestly well over an hour is my memory of it, maybe even a couple or a few hours? It was the type of line that you ended up talking to the strangers near you to pass the time. I shared some of Teale's birth story as we stood there. Teale in her hearing aids, a hand brace and an eye patch, she drew attention. She was still a tiny thing, looking more like a five month old as Jessica and I held her or pushed her along in her stroller. The five weeks premature had not caught up to her yet, even though the doctors thought eventually she would be average size for her age, at this point she wasn't even on the charts. We finally got through the line, paying a big fee to see my long time favorite artist's paintings. I was excited to be doing something not involving doctors and care of Teale's many needs. The exhibit was narrated by a tape recording as you walked through, so Jessica and I donned our head phones and started. We were not even five paintings in when I saw security guards hustling around, looking for something or someone. Then to my surprise they approached me. I removed my headset, scared it was because I had the baby and was going to be told to leave. They asked me a few questions, asking if I was Ellie. The stares from the people I had befriended in line surrounding me, wondering what I had done wrong. Then they asked me to come with them, that my husband needed me to call him. We didn't have a cell phone at this time, but I'm sure that is when I decided I needed one. It wasn't like Mark to be an overreactive type, there must be something seriously wrong for him to go through so much trouble to contact me. My thoughts turned to Beau, had something happened to my son? The guard lead me to a private phone and I called Mark. He answered, apologizing for having to alarm me like this. His words were not coming fast enough, as he tried to tell me his devastating news. I'm sure I was anxious, I'm sure I asked if Beau was ok? "Spit it out!" my voice rising. "The EGG results are in, it is seizures and they are happening every ten to fifteen seconds." he said. I held the phone looking at Teale, how could her brain be firing that often, I saw nothing, what was she feeling? "Her brain waves were chaotic and it could get worse without treatment. "The term is "infantile spasms" and it is serious, needing treatment ASAP!" he continued. "The doctors have asked us to admit Teale into our local hospital NOW." Mark said. My head spinning,  I needed to make the hour and a half drive home quickly. Picking myself up from the news would be tough, tears running down my face, I told my niece what Mark had told me. We handed our headphones over to the security guards and they assisted us through the beautiful exhibit I was supposed to be enjoying and out to our car. All the while I prayed for someone to protect us on the long drive home. I was going to need to pull myself together, resisting the urge to speed home or cry hard. As every core of me wanted to get home to the safety of Mark and the hospital, I put the van in drive, tears ran down my face, I was most thankful for Jessica's company. When we arrived home, Mark had packed and arranged care for Beau. He took over the driving to the hospital and I finally really cried, feeling overwhelmed by my fears. At the hospital we experienced a lot of "hurry up and wait." The doctors had been clear this type of seizure was tough to get under control and would need immediate treatment. Yet, we sat in that hospital room with nothing being done to stop her seizures. They had told us we would need to be taught how to give our baby the adrenocorticotropic hormone, (ACTH, for short) shots daily. I knew I wanted nothing to do with this and refused to learn, telling them insurance would have to pay for a nurse to come to our house. I knew my rights well and pushed hard for them. We were our daughter's safe people and would not inflict pain on her. Fighting hard, I won after two days in the hospital. Injections were given by the nurses there and a prescription was written. We would then be released, as we didn't need to stay at the hospital to learn the shots. A "visiting nurse" would come daily to give the shots to Teale, but we would also be starting an oral seizure medicine. Both the shots and the medicine had many side effects to watch for. Having a nurse see my daughter daily would give me some reassurance as they would help monitor her tolerance to the drugs. A lot of information was thrown at us, West Syndrome,  Lennox-Gastaut Syndrome and the likelihood of Teale being damaged permanently by this type of seizure. We were told mental retardation later in life was common. It would be another, wait and see situation. The medicines were not a cure, but hopefully we would get her seizures under control. Praying for Teale to be surrounded by the love of God, we left the hospital with heavy hearts. We filled the medicine at a 24/7 pharmacy, driving home in the dark on a late Sunday night after two days of hell. But little did we know the hell we would be enduring as the medicines wrecked our babies tiny body for the next few months. ~to be continued~

Monday, August 1, 2011

Happy Anniversary

August 12, 1999
It was going to be our tenth Wedding Anniversary and as was our tradition, we were taking a vacation. We had decided to get a house in Cape Cod, a splurge from our usual vacations of camping. But it was our tenth and it had been a rough year. Our second child, Teale had been born in December, premature and having a severe stroke at birth, the last nine months had been an emotional roller coaster. She had been diagnosed with cerebral palsy, we were told she was deaf in the high frequencies and blind in the right side of each eye. Her brain damage was extensive, but only Mark and I knew how extensive, as we chose not to share this with anyone. Our thoughts had been, if family and people who worked with her knew how little of her brain was not damaged, they would expect much less from her. So far our theory seemed to be working, as she far exceeded all her specialists expectations. We were learning sign language to communicate with her and her team of therapists came into our home daily. She already had a teacher of the deaf, a physical therapist, a speech therapist, an occupational therapist, a vision therapist and lastly an orientation and mobility therapist. Teale didn't use her right arm at all, so crawling was not going to be happening, but she scooted fast on her behind! She pulled herself forward with her left arm while in a sitting position, but because she was so fast and her vision was considered legally blind, she often "ran" straight into things. The orientation and mobility therapist had been brought in by our vision therapist to help us and Teale learn strategies, so Teale would not get hurt. We had found out that her iron was dangerously low just a few months ago and had had another specialist thrown into the pot of many specialist. Teale was now seeing a hematologist to try and figure out her issues with low iron in her blood and check for any other problems. We pretty much knew why she had low iron though, as she was refusing any baby food, preferring to nurse often. I was having a tough time keeping us with her demand. I was exhausted from the stresses of all the therapists coming into our home and the many, many doctor appointments. At that time in Teale's life we saw neurology, because she had had seizures at birth, but presently was not on any seizure medicines. She had many gastric issues because of the gastroschisis at birth, so we regularly saw a gastroenterologist. She had an orthopedist for her cerebral palsy in her hand and leg. She wore a hand brace to keep the muscle's stretched in her right hand. This brace drew much attention from strangers, once I was even asked if she was a bowler. Teale already wore hearing aids on her tiny bald head, seeing an audiologist for this. Her pediatrician saw her more than average to monitor everything carefully, but she had a special pediatrician also. A developmental pediatrician and a team of experts at the Kirsch Center in our local hospital would make sure Teale was getting all she needed and deserved. Teale's right eye was "lazy" and the left one was being patched to strengthen the right eye. Often Teale was a sight to see, a brace on her right arm, a patch on her right eye and huge hearing aids on her tiny ears. People would ask questions or just stare and make me wonder what they were thinking. From the beginning I was open about Teale's special needs, feeling much better talking about it all, as opposed to hiding. The "team" of people who helped us with our daughter was incredible. I couldn't believe a nine month old could have so many people in her life. We needed the break from the everyday chaos though and our Anniversary seemed like the perfect excuse. I found a house to rent in our local paper, we packed up our mini van with all but the kitchen sink and headed to the Cape for some much needed "four family" time. Our son was turning four years old on August 15th and we had decided to celebrate his Birthday before the trip. We had a huge party in our backyard, trying hard to make sure he never felt "lost in the shuffle" of everyday life with his "special needs" sister. I remember getting Teale's ears pierced, figuring between being very bald still at nine months and wearing huge hearing aids, it would be something pretty on her. My Mom had not let us get our ears pierced until we were thirteen, so maybe it was also me rebelling a bit, knowing she didn't get to control my daughter. I had her ears pierced just hours before Beau's Birthday party, all our family would be there and it seemed easier to just take the abuse all at once. My Mom would be sure to comment, but actually it is my Mother in law's comment I remember best after all these years. "She looks like a Jezebel!" she said. I remember being hurt at the time, now it just makes me smile, what a ridiculous statement. With Beau's Birthday party behind us, we were on our way to celebrate our family and our marriage. I was proud of all Mark and I had made it through, a tough pregnancy and very challenging year being the most notable. We had married relatively young and quickly, dating only nine months before our wedding. Many times I felt the pressure of people who thought we would never "make it." But we had and still with much love and respect for each other, we would celebrate ten years of marriage in our own quiet way, by regrouping as a family. The house at the Cape was perfect, clean, spacious, close to beaches, our time there was great fun, until it happened. Teale was sitting in her bouncy seat, I was probably trying to shove the baby food she hated so much into her mouth. We had her on iron drops, but ideally her eating iron was best. She would have no part of this though, turning her head and spitting it out, my daughter was nothing if not "strong willed!" That is when it happened, her head turned to her left quickly and then mechanically, slowly, with a bouncing rhythm, came back to center. She did this several times, alarming both Mark and I. We had run in home daycare for ten years together, we knew this was not a normal thing for a baby to do. So from Cape Cod we called our beloved pediatrician. Our suspicions were confirmed, it sounded to him like something neurological. He would set up an EGG with neurology for as soon as we were back. ~to be continued~