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Tuesday, May 31, 2011

The Pool

I should be walking, but considering I am going to be gardening all day in the heat, I decided to blog instead.
Memorial Day weekend is always jam packed. On Saturday we cleaned up the patio and did other various jobs. Sunday started out well, we didn't get to church again, but we did work on opening the pool. The day before Teale, our special needs daughter, had sat inside all day watching TV and youtube videos, while Mark and I worked outside. It had been a beautiful day, but we couldn't entice her to come outside, so we were determined to get her pool opened. She was given the pool a few years ago by The Dream Factory, an organization that fulfills dreams for critically and chronically ill children.  http://www.dreamfactoryincroc.org/, http://www.dreamfactoryinc.org/.  The organization is great and is always looking for volunteers and for dreams to fill.
Anyway, as I said, Mark and I were determined to get Teale out of the house, so opening her pool was the priority. We started working early and got a lot of it done without too much of a hitch. Mark is coaching Beau's baseball team, so at about 11 AM he needed to work on getting ready for that. Normally we wouldn't take on such a huge endeavor, coaching that is, because our life is just too unpredictable and there are too many times I need Mark to help me. Teale's meltdowns can overpower me and I have the bruises to prove it. Sometimes the only way to get her back is to hold her until she calms and or to medicate her, but that can take two people. Because of this, we try to stay out of situations that we don't have flexibility in, coaching a team doesn't have flexibility. The kids count on you and you must be there when you are scheduled. Calling a whole team or two teams and saying, "Hey sorry guys, but my daughter isn't in a good place right now and my wife can't be alone with her." just isn't possible. Mark used to coach Beau's teams a lot, but between the possibility of Teale having a bad day or a bad moment and the fact that it makes it doubly difficult for me to go to games and watch Beau, well, you get it. The problem was, no one was coming forward to volunteer and without a coach, the kids couldn't play. I agreed to this, hoping it would all work out. But admittedly, I was nervous and skeptical and so far, rightfully so. The first two games I missed because Teale was in a bad place, this one I was hoping to get to. I had help set up to be with me and Teale was excited, so off we went. Walking toward the game she was edgy, she was trying to process it and I knew the fact that she couldn't bug her Dad was a huge factor in her edgy behavior.  She LOVES her Daddy and to not be the center of his attention was going to be very difficult for Teale. As we walked past the other parents to find a secluded place in the shade she let out a couple of her now famous screams. They are ear piercing and LOUD! I got her to an area where the rest of the spectators were somewhat out of sight and decided that  not engaging with her was going to be my best option, hopefully she would calm. Mark and Beau both looked over, I could see their nerves rising as she was still shouting at me. Others looked also and that self conscious part of me worried about what they were thinking. Luckily Teale was able to calm herself, intermittent explosive disorder is an interesting thing to live with. One moment fine, the next "exploding!" At this point I was already trying to think out my escape at the end of the game. Teale would want to talk to her Dad, Mark would need time with the team. I also knew the gathering of parents talking and kids running around might throw her again. Then there was the walking back past the staring spectators, she was sure to think they were all looking at her if we walked by early. So I talked it out with the girl I had working with me and we left early, walking all the way around the outfield to avoid the crowd. Back home safe and sound I thanked God. My days are often filled with over thinking situations and over thinking how to answer Teale's bombarding questions. She has taught me that I need to try to stay one step ahead of her always, but it is not always that easy. The pool kinda got opened on Sunday and my polar bears went swimming. Teale did somersaults in the pool over and over again. She loves the sensory feeling of spinning. She can hold her breath and do five in a row, all with only her left hand and her feet working to help her. The pool settles her, it gives her peace and freedom. I will be forever grateful for the Rochester Dream Factory for this amazing gift.

Saturday, May 28, 2011

Alone

Today Gwenn ran from house to house enjoying her freedom and her neighborhood friends. She's now at another sleepover, her third in just a week. Beau had many plans with his friends and has been scarce much of the day. Soon I expect he will be walking in, maybe still with a friend or two. I can hear the neighbors outside laughing with their friends as my windows let in the cool evening air. Mark is at a gig and my MIL is getting ready for bed, so here I sit, alone.  I have just put Teale to bed and I ache from head to toe. We worked hard today, Mark and I had much we wanted done, like Mt Washmore to conquer and the back porch to clear. I snuck in a hike for exercise, as I work to get more fit. The list was endless; open the pool, till the garden, clean out the garage, etc. So, as Mark and I tried to whittle our way through much work, my kids were on their own. I remember those care free days well, when I was a kid and my parents worked on the same things. Mostly it was best to stay out of their hair or you'd be put to work. We would run around the neighborhood and come home when the six o'clock whistle blew at the fire house. That was our cue that dinner would be served soon. We didn't carry cell phones or have watches, we just listened for the whistle. All day we played kick ball and whiffle ball and tag. We explored the end of the creek where frogs and snakes could be found. We would hit up different Mom's for popsicles, lemonade and cookies. For me, that was childhood, running with friends, looking for adventures. We bought the house I grew up in in 1997 and watching my own kids in the same neighborhood often has a deja vu about it. I know all the hidden secrets of the neighborhood and have seen my kids find them also. What feels the most familiar is the comfort they have hanging with different friends who live nearby. We know the neighbors well and we all look out for each other's kids. What doesn't feel familiar is my middle daughter Teale, she is often alone. Her understanding of give and take in relationships is poor, therefor she has very few children who will tolerate her and none that I could call a true friend. She was good today, meaning she was fairly content and not explosive, she didn't ride Mark and I with her agenda, so we were able to work. It was a good day for Teale I said to Mark when he called from his gig. But then it hit me and tears welled up in my eyes, it wasn't really a good day. Teale sat alone much, occupying herself with her fantasy friend, Justin Bieber. She watched his movie and youtube videos over and over again. She interacted with Mark and I here and there, as we are truly her best friends. She played video games alone and ate and colored alone. The doorbell would ring and it would be for Beau or Gwenn. Teale seemed to take this all in stride, as she watched her sister and brother with their endless stream of friends. I on the other hand have a broken heart thinking about how alone she is. I dream about Teale finding a true friend. I dream about another child who is alone and wishes for someone to laugh with and their laughter filling my house. I dream about Teale running through the neighborhood, playing as I did and her siblings do. I dream about Teale having what the rest of us take for granted. May my dreams come true...

Wednesday, May 25, 2011

Hilarity!

Teale is cracking up, Mark is giving directions and my 83 year old Mother in law is "just doing it." Doing what you ask, why shooting baskets of course! She's trying underhand, but it is going basically straight, forward! Her youngest son, Mark & I took her in this past October. We try to keep her engaged and we have encountered some pretty funny things in the last seven months. She has played board games with us, my personal favorite being "Pop the Pig." If you haven't played it, you should, but with my mother in law (MIL, for short) and Teale it makes the game especially fun! The 3D pig sits on the table and you feed him these little hamburgers that have different numbers on them. Depending on the number on your hamburger you push the pigs head down that many times. When you push his head, it clicks and air builds up in his tummy, bigger and bigger with every push. You take turns not knowing when the pig will finally pop! His arms go up, his belt pops open & in my house both my MIL & Teale SCREAM! It is really ridiculous to watch and honestly I'm not sure who is funnier, my MIL or Teale? There are times the two of them are the most similar people in the house. Teale has severe brain damage, often repeats herself & perseverates on certain subjects. Sometimes she laughs uncontrollably, when it's not that funny. Sometimes Teale is obsessive, compulsive and sometimes she is oppositional defiant. Well, my MIL shows signs of all these things too. She will laugh hardily when most adults would just giggle, argue over simple things like staying hydrated and worry way too much about missing the news or being late to something. Sometimes it feels like the beginning of life and the end of life are similar. Teale is developmentally delayed and needs much care even though she is twelve and a half. My MIL has Parkinson's and her memory is going. Some days Teale says the same thing over and over again and on those same days, my MIL may get stuck on a thought also. Sometimes it just feels surreal, like this can't be my life! I worry about Mark having the same issues as an old man and I'll probably still have Teale in my care too. We joke that I will be taking care of the two of them, both of them repeating stories. Oh well, you never know, maybe I will get lucky and Mark will have to care for me!

Monday, May 23, 2011

The Senior Ball

This past weekend my 15 year old son went to the senior Ball at his school. He is "only" a sophomore, but is dating a senior. The whole experience has been strange for me. First of all, when did my baby go from being a little boy to this handsome young man I now live with? It all happens so quickly, I know this is cliche, but seriously! I stood there tying his tie for him, reaching up, way up, to adjust it around his neck and that's when the tears welled up in my eyes. Wow, he is handsome and it all just hit me. He laughed at me, saying his Dad had told him I was going to cry. Who wouldn't I thought, look at you! My memories of the overly active toddler, the caring big brother as we added sisters to his life and more recently the hilarious and sometimes moody teen, all flooded my mind. I tried not to think about the fact that soon he would be moving on and making his own way in the world. I tried to suppress my sadness and feelings of loss as I took pictures of a young man I couldn't be more proud of. Honestly, he helps keep me sane in my sometimes insane world. He makes me laugh much. He puts things in different perspective than Mark & I. He teaches me much about the world today. I often tell him I don't know what I'll do when he goes away to college or to live on his own. In many ways Beau is my rock, right along with Mark. Recently he told me "Not all parents are as cool as you Mom." I thought he was being sarcastic, but he said he wasn't. A mother son bond is so different from a mother daughter bond. Beau and I have a certain easiness in our relationship that I just love. He is a good human being, compassionate, caring, decent and accepting of all. He will add much to society when he gets out there, but he has already added much to my life. I love you Beau.

Thursday, May 19, 2011

ESPN

There have been many times I have felt a nudge to do something and when I do, I often discover the reason why.  My good friends know this about me, that if something comes together just so, I often say "It was a God thing." The night Teale had her first seizure is an example of that, I felt a nudge and as Mark said at the time, I saved her life. What we would have found in the morning, had I just rolled over and gone to sleep would have changed us all forever. I don't believe I would have Teale in my life today. Saying I saved her life is extreme to me, maybe because the nudge, the voice, was so strong telling me to go to her. I am a believer in God's whispers, in trying to listen for what he says to me. That night the "voice" was yelling, He saved her. There have been way too many times that following what I hear has proven beneficial. Last Summer I was at a wedding and met a very sweet young woman, we bonded quickly. Weeks after the wedding, her Mom called me. It turned out her daughter had shared our story with her of the school we wanted for our daughter. She then realized she had a friend who was on the board for that school and made a few phone calls to try and help us. Our journey had been long to get our daughter in, we had used many avenues also, but we were thankful for one more. Well, I considered that situation a God thing. Why had I bonded with this twenty something year old and told her our story. Why had she told her Mother? Why had her Mom cared enough about my daughter to reach out? Our paths crossed and it gave us one more person in our corner that may have helped us just enough.  Teale was accepted this past April to the school of our dreams. Other God things are more subtle. Everyone has those moments that they know who is calling them without looking at caller ID. Then there are the times you call someone just because they were on your mind only to discover they had something going on and your call was perfect timing. I believe some people tune into those feelings better than others or maybe they just act on their gut more often. My family jokes that I have ESPN, no that wasn't a typo, they don't call it ESP, they kiddingly call it ESPN. I believe Teale is often tuned into things far out of normal understanding. She recently asked me about my friends husband who is struggling with ALS. Teale would have no way of knowing about this situation and yet her compassion came through. She was worried about my friend's husband, I in turn texted my friend and told her. I knew that she would understand and she did, texting me back "she's tuned in baby!" Following a gut instinct can be tricky, my gut has told me my Mother in law has an infection or something isn't right with her a few times. Sure there are physical signs also, but it was more my feeling about her not being right that got us into the Dr. Although it is tough to verbalize to the Dr. why I want her tested, I have been correct often enough at this point that she now trusts me too. My gut told me to get Teale's leg rechecked by her Dr. when ER said it wasn't broken. It was broken. My gut has helped with Teale's care so often, that both her pediatrician and her psychiatrist "go with it" when I suggest something. It is often tough to find people who get this. Often people find it strange, but I bet if you search your memory, somewhere, at some time, you have heard a whisper. Just listen, you may be amazed at what you hear.

Tuesday, May 17, 2011

Seizures

As I sit at the kitchen table filling pill boxes my Mother in law marvels at the amount of medicine. Sometimes it does blow me away, the amount of medicines my daughter Teale is on. Twelve years old and she takes usually around 12 pills when she gets up & 12 pills right before bed. The numbers vary depending on what we are trying to stabilize; her moods, her sleep or her gastric issues. She is not always easy about this handful of medicines we hold out for her to take two times a day. There are times we argue, we threaten, we bribe & then there are the times I have thrown the water at her because she wasn't cooperating! It's embarrassing to admit, but if she is in a bad cycle of not cooperating about taking them, it wears me. There is no option about taking the medicines, her system needs them or things would be worse. Her seizures are horribly long when she has them. The shortest are 45 minutes and the longest are an hour and a half, with the first one being over two hours. There is nothing worse for me than watching my child seize & having no control. We ambulance her into the hospital if we are over 20 minutes, but there really is no "if," when Teale's body seizes, it is always big. The current medication for her seizures has been a miracle, she hasn't had one in almost 2 years! We are blessed to have found the right medication, but getting it in, well that can be a struggle. Sometimes we just want to say "Forget it, I don't want to fight about it, fine, don't take them!" But obviously that is not an option. Seizures are not her only issues, but it is probably the one that scares me the most. Her seizures are always nocturnal, meaning she has them in her sleep. Sleeping for Mark & I can be tough, as the fear of her having one while we are out cold is always there. They are generally brought on by sickness, her seizure threshold drops drastically when she has an infection or a fever. The first grand mal was by far the scariest, Teale was four years old. I had just nursed out baby Gwenn who was about five months old. She was laying in my arms in our bed & I heard something. Our next door neighbors were brand new & their dogs were barking, so I couldn't get a handle on what I heard. The fact that I was comfortable with my sweet baby made me even less likely to move quickly to check on the noise. Finally I gave Gwenn to Mark, feeling a very strong nudge to go see what the noise was. What I found was Teale in a grand mal with vomit all over her. I screamed for Mark, we quickly called the ambulance & I ran to my neighbors house in my bathrobe to get help. We needed someone to take care of Gwenn & Beau so we could both go to the hospital. Mark was calm, I was a basket case, her color was off, she was foaming at the mouth, we knew she may have aspirated vomit and the seizure wasn't stopping. The ambulance took forever as I paced outside in my bathrobe watching them go toward the circle at the end of our street instead of heading toward us. My neighbor's husband ran like I have never seen a man run to get them to come to my house. Mark continued to stay calm, as terrible thoughts went through my head & I sobbed. I was sure we were going to lose her or she would be more brain damaged if they got her out of it. Mark prayed over her & told me to get dressed so I could ride in the ambulance. I stood in my room naked, sobbing & apparently was holding my underwear upside down when my dear friend & neighbor walked into my room to help me. She took the underwear & held it for me to step into, a forever bonding moment that we laughed about for years. Mark had told her to go help me & for good reason, I was a mess. I took off in the ambulance with Teale, wondering if this would be my last moments to be with her? Mark was following in our car. When we got to the hospital she was whisked away and medicines were administered to get the seizure to stop, but it would not stop. We called our minister, terrified to be alone. She came and prayed with us as we anxiously waited. When the seizure was finally under control, tests were taken to see if there was more brain damage caused by the two plus hours of seizing. Amazingly her MIR looked similar to her previous ones, so we were hopeful. X-rays were taken to see if she aspirated vomit, which she had, so she was treated for that. We were finally given a room & it was decided Mark would stay, as I was still nursing Gwenn, who had never been away from me. My sister had come to my house, taken Gwenn & Beau off my neighbor's hands & driven back to her house. Before she left my house she locked it up like Fort Knoxs. Little did she know in Mark's haste he had grabbed keys that didn't have a house key. It was 3AM when I got back to my house & discovered I couldn't get in. I was emotionally & physically drained & just wanted my bed. Waking a neighbor again seemed unfathomable, so I did the only thing I could. I got a ladder out of the garage & put it up to our low roof & broke in through a window. Gwenn was asleep in her car seat, Beau had stayed at my sisters house. Often I think about that move, stupid beyond words, what if something had happened to me, my baby was in a car & no one would know. But as I said, I was desperate for my bed. Morning came, although I don't remember sleeping, I called the hospital & Mark said Teale was still sleeping. The medications and the seizure had knocked our daughter badly. She had vomited many times after I left, but was finally at peace. All tests were looking positive and the doctors thought she would come out of it unscaved. Amazingly, they were correct, that evening we brought home our daughter with her boundless energy. The neighbors all greeted us in the driveway with tears in their eyes. Teale the fighter had won another round!!!

Saturday, May 14, 2011

Quiet

Wow, it is so strange to sit in the quiet, enjoying a cup of coffee. My home is almost always a bundle of energy. I am often called upon to be "on." Teale wakes with the same energy she has throughout the day, it is always in high gear. It is like her body doesn't know how to relax and her mind doesn't ever rest . Teale bombards us with questions from the moment she wakes up. She is trying to figure out the world she lives in and her role in it. The first question is usually "No school today?" That is how she words her sentence, it is a question, but in her head it is also a statement, she hopes your answer will be no. Some mornings saying, "Yes Teale, there is school today." Throws her into a rage, yelling "No school today!" at you, hoping her anger changes the response. We walk carefully with every answer we give her to every question she asks. One day recently Mark was still half asleep when Teale was throwing question after question at him and he answered sleepily with a "yes." I looked at him shocked and said, "Do you realize what you just agreed to?" He thought she had said something different, but now there was no turning back. Mark had agreed to taking Teale for a ride in the car so she could listen to her CD's. It was very early & he was barely awake. Such is our life, listen carefully, even when you are still trying to process the morning or get something done or just be in yourself. All parents do it, answer a kid without really listening, but in our house that is very dangerous. You may agree to buying her a cell phone or that it IS her Birthday tomorrow, when her Birthday is  six months away. That is why mornings like this are so precious, it is quiet, I won't have to be on as soon as Teale opens her eyes. She is not here because she went to overnight respite, a program the state runs to give families like ours a break from the everyday care of a special, high maintenance kid. It gives us energy to continue caring for her, it gives our other children a chance to have us again. We all get a little down time from the questions and the rages that can happen because she doesn't like our answers. Today I will do what I please in my house, I will not be controlled by Teale's needs or wants. To some this may sound strange, but to those who live similarly, I know you understand. This time alone as a family of four instead of five is not all happy. It comes with a price, there is a slight fear that we have giving Teale up to the care of others. There is the guilt that we need this. There is the uncertainty that she is safe. It is not perfect. As I sit here with my home silent and a cup of coffee, at least for now, I can feel that I am trying to do what is best for myself and our family. Peace everyone...

Thursday, May 12, 2011

Just Curious...

What are your beliefs when it comes to spiritual guidance? My poll is to the right. Often my views are just what I believe, not what someone has "taught" me. An example of that, I do not believe in a Hell, period. You can feel free to debate me on that, but I will not argue my belief, it is, what it is. We all have some sort of feelings about a God or lack there of. I am just curious where you fit into this debate, because, after all "We are God's Entertainment!"

Wednesday, May 11, 2011

Gwenn and Growing Up too Fast

Yesterday I had a doctor appointment for Gwenn concerning her frequent head aches. She had a bout in March and now another round. We had thought it was allergies or dehydration. Those factors still may be part of the puzzle. Gwenn is only 8 years old and she lives with stress everyday. Her older sister, Teale is unpredictable, loving Gwenn one moment and then suddenly hating her. We try to protect Gwenn from Teale's rages, but sometimes she gets caught in the crossfire of all of it. Sometimes Gwenn is the target of Teale's anger and sometimes we (Mark & I) are not as vigilant at protecting her as at other times. Gwenn's head aches seem to be migraines and almost constant. I believe her tolerance for pain is very high and she has just "gotten used" to the pain being constantly there. It is especially sad for me to hear that the head aches may be migraines, because I am a migraine sufferer and understand the horrific pain. Thankfully Gwenn's don't seem to be hitting my level of pain and she is not vomiting with them, although at times, she is nauseous. As we talked in the doctor's office yesterday, I sensed where the pediatrician was going with the cause of Gwenn's head aches. He sent Gwenn for a quick eye check with the nurse. While she was gone he asked me "How much of this do you think is caused by the stress of living with Teale?" My heart felt sick, Teale, it always comes back to Teale and how she affects us all. I thought carefully about my answer before opening my mouth, a skill I don't tend to be good at! I felt defensive, like Mark and I are not protecting Gwenn enough. I felt angry, Gwenn is hurting and blaming it on Teale seemed unfair. I started having migraines very young also, I believe I was 9 or 10 years old. I thought about that factor as I summed up what I wanted to say to our dear pediatrician. Maybe my defensiveness was because I often feel like we do a good job at looking out for all our kids individual needs and he was attacking how I balanced this. So much went through my head as I sat there, my blood boiled and I wanted to say something sarcastic like "you try living this life." I finally answered with a simple "I don't know" tears in my eyes, feeling like a failure. Gwenn has been forced to grow up faster than Beau ever was. She takes care of herself differently than Beau ever did. She is more independent and very head strong. I often joke that she will be moving out soon to get her own apartment. Is she like this because of her sister's constant need for attention? Is it nature or nurture? Most days I feel like Mark and I work hard at making sure she gets time with us individually. Most days I think she feels loved and protected from the stresses of living with her explosive sister. Most days I feel good about how Mark and I run our family. Yesterday I felt like I had failed Gwenn. She is hurting physically because of emotional stress and I missed the cues. Today I will be there for her more.

Sunday, May 8, 2011

Happy Mothers Day

Today may you feel loved, appreciated and celebrated as the woman and Mother you are. That is if you are a Mother. It is a job like no other and quite frankly not what I expected it to be. I had a very idealistic view of what life as a Mother would be. I thought I had lots of "training and experience" when I made the jump from wife to Mother. Mark and I had been married for over five years when we decided it was time for us to become parents. We had worked side by side as daycare owners and operators, caring for many children in our first five years of marriage. We had enjoyed our time together, traveling, going out on the town often as Mark was also in a rock and roll "bar band" in our early days of marriage. We were a happy couple, enjoying life and building a strong foundation to welcome a child into. As I said before, I was "green" back then, thinking love was all you needed to raise a happy family. I felt blessed that I had married a man who was strong in his beliefs, loving and caring toward all. He had showed compassion and care in our daycare and I was excited to see him as a father. Beau was due on our sixth Wedding Anniversary and was born three days later. (his birth is a past post in this blog) Life was as expected for the most part after Beau was born. He was an amazingly sweet baby. Loving him was more than I ever expected and Mark was a fantastic Dad. We relished in those days around our sweet son. He was about one when we decided we wanted to have another baby, a sibling for Beau. We thought it would be nice to have kids close together, after all we cared for ten kids a day, mostly preschoolers. We quickly got pregnant with our second child and that child was due on Mark's birthday, July 12, 1997. Beau would be just under two years old and it seemed perfect, but it would not be. I lost that baby early in my pregnancy and really struggled with that loss. It took us about 5 months to get pregnant again, which seemed like forever at the time. This baby would be due in January 12, 1999. Teale was born December 9, 1998 and life has never been the same since. Her birth was traumatic and her issues are significant because of it. I can't deny I often wonder what life would have been like had I not lost that baby in between Beau's birth and Teale's pregnancy. Someday I will write about Teale's birth, but not today. Teale's birth caused her severe brain injury, but at the time, I could have no understanding what that would actually mean. I used to think love was all a child needed to be happy, sounds silly now that I have lived as a mother to Teale for over twelve years. I used to think the most important thing was the love of the couple, if a husband and wife were happy in their marriage, the children would be happy. I admit, I was naive, I knew nothing about how brain injury could and would change my life and my family. I didn't know children could be violent, I truly thought love conquered all. I was always proud of the man I married and of the peacefulness in my life. I had been raised in a broken family and had seen three of my four siblings divorce, so being married to a man who I still loved and respected deeply was all I needed to have happy children, right? Well, obviously I have learned that love does not conquer all and a happy marriage does not equal happy children. I have learned that I am not in control of my life solely. I have learned much more than I ever wanted to about mental illness and the toll it not only takes on the person with the disease but also on the family who loves that person. So as you celebrate this Mothers Day, please say a prayer for all the Moms out there who found out being a Mother is not quite what they expected it would be. Be kind to yourselves for any disappointments you have experienced being a Mom. Enjoy the day and realize that although life never seems to follow the script you hoped it would, there is always good surrounding us. Happy Mothers Day!

Thursday, May 5, 2011

Where is God in all this?

When I'm in a good place I feel God. When I'm in a bad place, I feel God. Some days it is stronger, some days it is less. I know in one of my most difficult times, I felt God's presence the most. Teale was in the NICU after her very difficult birth for two months. During that time God was surrounding us. I felt his love constantly and have never quite gotten that same intensity back since or before. Mark would often, if not every night say a prayer out loud for our tiny baby right before he & I tried to drift off to sleep. Sleep was tough, leaving your child in the care of others is a huge lesson in letting go of control. I would toss and turn, get up to pump, so I could keep my milk supply going and I read veraciously. It's amazing the amount of books I read during that pregnancy and while Teale was in NICU. Sometimes I can't remember if I already read a book until I'm deep into it. I read to escape, the pain was so great, the uncertainty about her future so scary. I turned to God a lot to get through, I prayed often, I just talked to Him like he was my best friend. At some point after Teale came home I remember feeling like there were spirits in her room at night looking after her. As she aged I would hear her giggle by herself in her bedroom. I had such peace, knowing she was loved, not only by me but by God. I am still very strong in my faith. I'm not the type to push my beliefs on others, I am just quietly spiritual in my own way. But what I have found is that many of my good friends who have children with special needs are not. Many of my friends really struggle with "why would a loving God do this to a child?" I can't deny there are times I am right there with them. I also know there are times all I'm looking for is that amazing closeness I felt when God lived with me constantly. I often miss the quiet prayers by my strong, sweet husband as I fall asleep in his arms. I say one to myself nightly and my guess is he does too. Somehow I want to get back that feeling that God is truly part of our family, I know I can, I just have to work at it. So as you go through anything bad, remember to look for the good. It's easy if you keep your eyes and your heart wide open.

Monday, May 2, 2011

Hope

A terrible weekend of tip toeing around our daughters emotions, leaves us both worn and stressed out. Today is a new day though, so we will put on our happy faces and move on. But it will be tough to pretend. Mark had insomnia over work stress and was at his office all night. He left our bed around 1AM and I felt the lack of his presence and woke also, never really falling back asleep either. I kept thinking he must be on the computer, something he will do if sleep is eluding him. When I finally went to look, he was gone. For a split second I actually thought, "he has left us, the stress was just too much and he is gone." I can't deny I too have thought about leaving, I've dreamt about running away to California and not looking back. There have been times that I have even worried about one of us taking our own lives. To someone on the outside, I'm sure you will be appalled at this. I am being honest though. That is how much days that turn into weeks or even into months of living with a daughter with severe mental illness can knock a person down. There is a "normal tough" in our lives, something of a "standard tough" and then there are the times it is ramped up and "super tough!" The combination of sleep deprivation and terrible behavior over a long period of time will make life overwhelming. Those times may only be days or they may become weeks or even months. When the "super tough" times are never ending there is a desperation that occurs inside of us. Right now I am ok, the morning went well and I have hope again. I find if I have hopeful moments, I survive the rest. When the behavior is relentless, I start to dream about life far away. I have joked with Mark that if he ever finds me gone, just let me go, move on and don't look back. He and I laugh about such things, as crying often serves no purpose in the most difficult times. It is the oneness we feel and the laughter over the ridiculous that really gets us through. When we joke about leaving, Mark and I know we will never do it. We love our family much too much. I do find though, to voice your most horrid thoughts without judgement and with understanding is really all any of us needs.