Mother's Day

It started out well. Alone on my porch, listening to the birds, a hot cup of coffee in hand. I love those times alone, the quiet, the birds and usually the cats nearby. Cheddar, our orange cat sat on my lap, considering the chill of the morning, he was a welcome guest. Teale staggered out first to find me. She knows my routine, if I'm not in bed, I'm on the porch. She asks about the day, trying to figure out what she has to do. I told her it was a Sunday, no school, Mother's Day. It was cold outside and she wasn't dressed for the chill. I had on my robe, a pair of warm boots and Mark's coat. I watched Teale shiver and told her to go look for her Dad, it was too cold outside for her. I told her, tell your Dad it's Mother's Day. Mother's Day, it's supposed to be a magical day where all children are angels and mental illness takes a vacation. As I sat there I thought back to the past Mother's Days. The bad came to mind faster than the good. I had to work to remember the good ones. The one when I was expecting our first child, the mystery of what I was carrying, came to mind first. Mark and I never found out the sex of our babies in utero. I had just started to show about Mother's Day. Church friends would notice and I felt special. Mark and I were expecting our first baby on our sixth Wedding Anniversary in August. The baby bump had popped and I proudly showed it off. Then there was the year we were expecting our second child. We had our son, Beau, tell his grandmother during the passing of the peace at church that he would be a big brother in January. Little did we know at that time the issues that would arise in this pregnancy. We had no clue how much that baby would change us. So as Teale went inside to wake her Dad, I sat there thinking about our life together and the amazing journey we have been on. The rough times have been many, but we have stayed true to each other, growing in depth of our love. Teale had changed the journey, made it more of a challenge, but we had been able to grow and learn, not lay down and die. Mark and I have adapted, we have changed, we had to. Mother's Day memories continue to fill my head and I pray today's will be peaceful. We've had many holidays where peace could not be found. Days we had divided and concurred, knowing it was the only way to salvage some of the day. This year would be like that, Teale would be edgy, her mental illness would not take a vacation so that I could bask in the glow of my family. She would argue, be ok, then be angry and unsettled more. She would bait us into making her angry and seemingly want to pick fights all day. We wouldn't even eat dinner in the same room or at the same time because Teale was controling us. Mark would leave many times with her to give the rest of us some peace, but when we all came back together in the house, her intensity came back too. Seven PM couldn't come fast enough, we could put her to bed, stopping her pain and ours. Something was off, her body was fighting her, her rages were uncomfortable for us, but I suspect more so for her. It's morning the day after Mother's Day. I went to bed early last night to escape my pain. Today is a new day and I'm hopeful Teale is rested and her mental illness is more at ease today. I live on hope, I have to.

Strength

Strength is made.
It comes from the need to be.
It isn't something we are born with.
Strength is made.
You may never know your full strength.
You may never need to.
Strength is made.
It comes from challenges.
It comes from fear.
Strength is made.
It comes from good.
It comes from love.
Strength is made.
It comes from hope.
It comes from trust.
Strength is made.
You may never know how strong you are.
You may never need to.
Strength is made.

The Doc's, part five

The day of the hospitalization I fought with Dr Tom on the phone. It was the most mad I had ever been. I SCREAMED at him! I swore at him and for the most part I don't swear. He took it, knowing I was hurting and needed to be mad at someone. I didn't want Teale to go to the psychiatric ward, I wanted him to fix her! He needed help in this. He needed people to observe her 24/7, so that they truly understood what she was going through. The day seizures were also God's way of making me let go. They were leverage the doctor's used as to why I HAD to do this. Her seizures are scary, they were bound to just get worse with this sleep deprivation. She could have one of her hour and a half seizures. She could have one the hospital couldn't stop or come out of one with more brain damage. Teale could even die from the seizures if we didn't get her sleep under control. This was the doctor's leverage and it was the argument that won. I had to help Teale and I had to help our family. I had to trust others to care for Teale, I just had to. Dr Tom and I still work together all these years later. He is one of my strongest supporters and advocates. We made it through my anger at him, but even today he still says he wasn't sure I would stick with him. I was so angry at him for not fixing Teale at home. Even today, Dr Tom can remember my anger vividly and talk to me about how he was scared we would never work through that. We did though, it took a long time for me to let it go, but Dr Tom was kind and patient and in the end I knew I had been wrong to blame him. I wasn't myself in those days of sleep deprivation, I was lost in my anger at the world and at God. Only Mark could bring me back. He was so caring and understanding. He prayed out loud every night as he held me tight. We would go to sleep knowing Teale was not going to wake us, but also worrying about her safety. Two weeks she stayed in the psychiatric ward. There was a routine we figured out to make it through that time. The psychiatric ward was our new norm. We would sit in a room with a big table, many doctors, a social worker, Mark and I, seated around it, staring at each other, asking questions and trying to trust. Many meetings were held to discuss options for care, a treatment plan was developed in those meetings. Dr Tom and Dr Dave were not there though. They were not part of this and that was tough. Lithium was suggested for Teale, it's an old school Bi Polar medication. Bi Polar was thought to be her issue, it's not a diagnosis handed out easily, especially to a child. It was difficult to hear that, it was a lifelong disease, a "forever sentence," if you will. The social worker handed us papers on Lithium and Bi Polar. The doctors explained their diagnosis and the reasoning on their choice of Lithium. Then there was the possible side effects. We were warned harshly of the dangers of dehydration on Lithium. If Teale were to become sick on this medication, if she were having diarrhea or vomiting, we would need to go to ER. Dehydration on Lithium could lead to death. It is not a medication commonly used on children. There are no studies on the long term side effects, it is risky, but what choice did we have? We could take her home and her seizures could kill her or we could try the Lithium and a stomach bug could kill her. Was life this complicated for other families? My heart hurt, I felt so conflicted. We took home the information on Lithium and talked to Dr Tom and Dr Dave. By morning we had decided there was no other option but to try it. It would be a slow increase, her blood draws would be even more frequent to monitor her levels in her blood stream. Lithium has a narrow "therapeutic" range, toxicity can also cause severe consequences, again death was being thrown at us. If Teale was on too high a dose for her body, she could become impaired or even die. Mark and I would need to pay careful attention to the symptoms of toxicity because if we missed the subtle ones at a low dose, it may be too difficult to get her blood level back down to a safe level. Her body had already shown us in the past it doesn't metabolize medications as expected. Her brain damage causes things to not necessarily work the same as "normal" people. Plus she was born with her intestine outside her body. The time her intestine spent in amniotic fluid caused damage and the intestine are in a random order inside Teale, not that perfect design God made in the rest of us. The doctor who did that surgery on Teale in the NICU had to just "push" her intestine and colon into Teale's stomach wall and close it back up. It would be impossible to make it into the design the rest of us have. So, in short, Teale does not absorb anything the same as you or I. Sometimes it takes a far greater amount of medication to help her, other times it is a far lesser amount. The Lithium would be started at a very conservative dose because of Teale's young age and her absorption challenges. I felt safer that the Lithium would be monitored in the hospital in those early days. If something went wrong, my Teale was with nursing staff 24/7. And so the long process of building up the Lithium in her bloodstream to a therapeutic level began. Again, Mark and I were full of fear and hope, that this could either hurt or help our daughter, there were no guarantees. Our faith would have to get us through....  (to be continued)

Blahs

Blahs, they have overcome me today. I thought blogging might help, but I've started several and then given up. I just feel flat, without any real emotion, no excitement, no desire to go do something or get something done. So here I sit, trying to figure it out. Sleep has been off. I feel tired after a restless night of dreams I can't remember, but I know they were upsetting to my soul. My head has a dull pain and my throat is scratchy, allergies? I've woken coughing hard the last couple nights, maybe that's it, but I don't think so. It's more like an ache for something I can't attain or even completely put my finger on. It's a loss I'm experiencing, the realization that my life isn't what I hoped and as I age, I'm running out of time. We were all going to be great when we were in our late teens and early twenties. Some or maybe many of you achieved that? Mark and I started out strong, life was good after we were married in 1989, but it took a turn in 1998 when we had our Teale. Teale changed everything. Even thinking about it, the changes we experienced after Teale's birth, makes my heart beat faster. My anxiety increases and I realize, this is it, this is the cause of my feelings today. Mark and I were changed, in many ways for the better, but the changes that hurt are tough to accept. We just couldn't get ahead after having Teale. We had very little support from family and there were many times we were drowning. Still we struggle, sometime's Teale's mental illness is the sole focus of all our energies. Mark and I thought that doing the right things in life was all that mattered. Our faith kept us going, we knew our God wouldn't let us down. If you work hard and be true to yourself, good will follow. But lately I've all but lost that faith, my God has been distant and I'm having trouble pulling him back into my heart. I feel like life has passed us by and it's just getting tougher. The future looks bleak and never ending, will we ever get ahead? Was our trust in our God helping us through it all just a foolish fantasy? Today I just feel blah.

The Doc's, part four

When Mark finally called, his words were few. He said it had been long, Teale was angry when "they"took her suitcase. "They" saw a lesser version of the Teale we had been experiencing. That had been one of the toughest things about this crisis. Doctors and her school had not seen what we had. The rages we were seeing, the anger, the frustration, the uncomfortable in her own skin, no one outside our little family had seen it. Describing our home life to the doctors and to her school professions was surreal, they would look at us with questioning eyes, like we were making it up, like we were exaggerating the truth or looking for attention. When Teale started having short seizures, day seizures at school, that's when I finally felt like they started to get it, like they started to believe us. Short seizures were Gods way of helping Mark and I be heard. Day seizures were concrete, they were evidence of what we were saying and they gave us leverage toward the need for more help. My sanity was being challenged too, I was fried, I hurt more than I could describe adequately to anyone. My Mark knew because I had taken the brunt of the long nights up with Teale. He's not as tolerant of sleep deprivation, he suffers more than me when sleep is taken from him. I can handle it, but even I had hit my limit, it had been too long and too severe. We had been going to bed as fast as we could after putting Teale down, knowing she would be up in just a couple or if we were lucky, a few short hours. She was too young and too unpredictable to be up alone. It was taking everything out of us, we were challenged to a point I thought I would never get to again. (Read my Blog, My Secret, to understand this  
http://wearegodsentertainment.blogspot.com/2013/02/my-secret.html ) I remember the moment well, I said to Mark, "I know I won't do it, but I'm as close to suicide as I've ever been. I feel like driving into a Mack truck with Teale in the car, to save you, Beau and Gwenn from living this." Mark understood, he had had similar feelings, he had just not voiced them. I was scared, the most scared I had ever been in my adult life. The sleep deprivation was truly making me crazy. My mind was fogged and the solutions to stop the pain seemed valid and logical at the time. So to hear Mark on the phone tell me she had raged at the hospital, not as severely as she had at home, but at least they were seeing a taste of what we were living, somehow that helped me. That is sad for me to write, my daughter was hurting, her body was suffering and we couldn't regulate her, we couldn't get her moods stable. Mark told me that the people at the hospital seemed caring, he knew I needed to hear that. He probably made it up, but I needed it, so I don't blame him. To this day I don't know what Mark really felt that night. He was dropping our six year old at the psychiatric ward, our six year old. Even today, with her now fourteen and pretty stable, much because of that hospitalization, I still have a tough time imagining our trusting them to care for her. I imagine Mark cried when he left her there, but got himself together before he called me and came home to my barrage of questions. I imagine it hurt his heart like no other time in his life and I bet he carries secrets of that night that he never shared with me. He's protective of me, he knows I am strong to a point but in this situation I was fragile. I needed Mark to be the strong one. Teale was admitted into the children's psychiatric ward and Mark came home. I'm sure he held me tightly as I cried myself to sleep, worrying if my daughter was safe, if she was scared, if she felt abandoned and if we had done the right thing.... (to be continued)

My Rock

I'm married to a man who loves me. His love is evident and I am his priority, that I should be sure of. But I can be insecure and needy, I can question his love for me. I have a saying when I'm struggling with this, "I need some Markie time." It's a true craving I feel when our connection has been weak. When we've been running the rat race and not spending quality time together. When my soul needs to reconnect with the soul I need the most to make me feel whole. I don't always see his love as clearly as I should when he is trying to balance work, family, his life and me. Jobs and the almighty dollar often rules people's lives. You need it to survive and it also helps us to live. Vacations, times out on the town, activities with loved ones are all memory builders that need money. Sure money can't buy love, but there is no denying it buys things to make life and love more fun. Mark and I have not made many decisions in life based on getting ahead and making more money. We have done what was right and we have done what would help our family the most. That may mean what brings the most peace and or stability to our challenging family. We have chosen what was the best moral path for us. We have chosen the mentally healthy path for all our family. When life gets to me, Mark is who I seek. He calms my frazzled soul. His presence gives me strength. His words are often wise. I know he always comes from a place of caring. Mark has no hidden agenda with me, he is my rock and he loves me unconditionally. I sometimes question if I am as good as he is? I am much more opinionated. If I strongly take a stand, Mark will always back me. This can be frustrating though. I have heard myself call him a martyr. He rarely pushes an opposing side to mine. I cannot get his own thoughts on a problem or a decision that needs to be made because his words are the same "whatever you want, I want." In many ways his indecision makes our life easier because we rarely disagree. In some ways it makes life harder for me. Much is on my shoulders, I carry a lot of the weight and if I take us down the wrong path, I own it. I struggle with making many decisions alone and often seek my friend's opinions. Those who are married to opinionated men are jealous of my easy going husband. Mark is sweet, kind, loving and thoughtful. Our friendship is strong and it has an incredible ease to it. My niece recently asked me if I knew from the start that Mark and I should be together forever? I did, I felt safe with Mark. I felt cared for and loved beyond anything I had ever felt. The immediate ease of our relationship was like we had been together forever. Our friends commented from the beginning on how natural and comfortable we seemed. I am not sure what I believe in when it comes to afterlife. I believe in a heaven, but I have also thought that Mark and I must have been together some time before this life? I think about past lives, our growing and learning from them. Maybe we acquire different skills from each life to take to the next? Maybe it is our failure at a skill in a past life that we try to learn in our present life? My dreams sometimes feel like windows into those lives I already lived. What are my lessons in this life? Did I need to learn compassion, letting go, trust? Mark says I think too much, he's probably right. Maybe I just need to live in the presence and have faith it's all in God's plan, just like Mark believes...

The Doc's, part three

The anger and sadness hurt so badly I felt like I was losing myself. I wanted to run, this was too much and I wanted to be done. Parenthood should not hurt this much. Other parents didn't experience this level of pain, did they? It would be years before I would connect with families who also understood this pain. I would never be happy for their pain, but the understanding made my life so much more tolerable. But this was not the day I had expected to have. It was October 21st, 2005, a Friday. That night a long time family friend's daughter was getting married. It was their only child and it was sure to be a beautiful wedding. I love a wedding, I love sitting through the vows while holding my husband's hand and thinking about our own special day many years ago. I love that our love is so strong and the meaning of the ceremony is so much more powerful to me as we age. I took it seriously as a young bride, but today, in our relationship, in our marriage, I feel even more blessed and even more in love than ever. We have lived much happiness and we have lived much pain. There is some truth that what doesn't kill you, strengthens you. We have grown together, learning from life and one another. We have loved each other with a strength that builds. Often when I say "I love you," Mark responds "I love you more," but it doesn't stop there because I believe "I love him more" to which he always replies "You obviously don't understand the meaning of infinity." Infinity, that is what makes our marriage, we are here for each other forever. When we said those vows many years ago, maybe we did not understand how committed we would be to each other? As I age, I see our marriage as not only solid in love, but also a firm commitment to each other and our God. Sure we have had hard times, moments when the grass looked a little greener on the other side. We worked through tough times because, let's face it, the grass still needs tending and mowing in the neighbors yard too. As I let go of the fact that we would not be spending the night celebrating a new marriage, we would instead spend it hospitalizing our daughter. I realized our marriage was even strong enough to get through this crisis. I packed Teale, struggling with what to send to a hospital where she would know no one. I filled her suitcase with favorites and hoped I wasn't forgetting something that she would want. I called our friends to let them know we probably would not make the wedding, leaving a small opening, just in case. My sister was disappointed and was in touch much of the night, just hoping I would pull myself together and come, even for a short time. I just couldn't though, my heart ached so much I felt like bursting. I had cried for so long my eyes were swollen and red. No make up could fix me, celebrating would be impossible. Who besides Mark could understand this pain I was feeling? I have faked joy through many tough times, but this time I just could not do it. I felt like I would be a downer at an event where no one should be. My Mom, my brother and a few close friends came to comfort me. All their words were few, their compassion and care was evident though and that meant more than words. Afterall, what could you say to a Mom in this much pain and uncertainty? My friends stayed with me while Mark went to Teale's school to get her and take her to ER. He would need to insist on a pediatric psychiatry admission. Dr Tom called ahead to the hospital. Dr Dave supported Dr Tom's advice, Mark and I needed relef, we were failing too. The unknown was killing me as I waited for a call from Mark. I had Gwenn and Beau and quite frankly I was a basket case. It was decided it was best for me to not go with Mark to the hospital, leaving my Teale would be just too heartbreaking. No matter how much I knew she and our family needed this help, I just couldn't do it. Thank God for Mark, he was strong, levelheaded and loving. I trusted he was doing the right thing and would not leave my daughter, our daughter, someplace unsafe. I had to trust or I might lose more than just sleep. Teale's seizures are never less than 45 minutes long and they have been close to two hours long. I could not be responsible for her having a big one that caused her more brain damage or even death, I had to trust the help was going to work. I had to trust Dr Tom, Dr Dave and Mark. I had to let go of my anger and pray for relief. It would be hours before Mark could call me and let me know how things were going. My friend stayed with me and let me cry and talk and sit in silence. Those hours were torturous, but in the end it was one of the best things we ever did for Teale. ~to be continued~