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Monday, May 13, 2013

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.

Wednesday, May 8, 2013

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)

Tuesday, May 7, 2013

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.