The Doc's, part seven

It became evident that going home was the best choice. Teale was calmer, still not sleeping much, but there was a lot of hope the Lithium was helping her. We had several meetings about what to look for in side effects, how to help Teale if she became enraged, which emergency medications we could use that wouldn't counteract with her other medications, etc. Much was thrown at us, but by this point in Teale's life, we were a good team, Mark and I. We had our own plans and we both knew what we wanted for Teale, we just wanted her to feel peace. To be the parents watching the behaviors of your mentally ill child is one thing, it's beyond tough, your heart hurts constantly that you can not help your child. The other side of the issue though, is the child. Mark and I could not imagine what Teale felt? The pain inside her, the anxious feeling, the anger, the confusion and the frustration, all in this little girl that should feel nothing but love and joy at this point in her life. Often with mentally ill children, it has been my experience that people are not comfortable being open about it. Mental illness is still taboo, it's not talked about openly, making it seem or at least feel like somehow it is the fault of the mentally ill or of their parents. In our case it's fairly clear Teale's brain damage is the cause of her mood disorders. She does not have two brain lobes working together and that loss creates a lot of problems with regulating moods. Somehow this probably gives me more strength to be upfront and honest about how difficult her behavior can be. After all her brain damage was not my fault. Our friends and families are very kind and caring when Teale in tough behavior cycles, they are supportive and loving toward us. I think there have been times though that they have thought, she is too much and we should give up care of her. I have even had those times when our life has been so out of control, I just could not imagine continuing the journey. It just wasn't an option though, in my heart I knew if we couldn't take care of Teale, who could? Our love was (and is) deep, we balance each other well, Mark and I. We know when to take a break and if we don't know for ourselves, the other one knows for us. I have asked, no told Mark to leave the house, to get away, to take some time alone. He plays the saxaphone and music helps him, so I send him away to release through music. He has done the same for me. Making me spend time with a girlfriend or just by myself doing something I love, like gardening. There have been cycles of Teale where she demands our attention constantly and after awhile you are so burnt out your nerves are just raw from trying to keep her happy and even tempered. Dr Tom says that we have all developed PTSD because in bad cycles, living with Teale is much like living in a war zone. We are on edge, always on our guard and trying to stay one step ahead of the game. She is unpredictable, she snaps suddenly a fiercely. We worry constantly about who would take care of Teale if anything ever were to happen to Mark and I, but that is a whole other blog. I know that some friends and family in the worst of times just could not see the light. I know they thought Mark and I were living in hell and Teale was the whole cause of it, so why not just give her up to a group home? Even in the most challenging times, Mark and I had hope and faith that things could and would get better. We knew Teale needed us, not in a martyr sense, but because we truly loved her and believed that inside all that confusion there was much good. I will not deny there have been dreams of running away from all this. I have had times when having to restrain her that I have had to keep my anger in check to not hurt her because my anger was there too. In times like that I pray, I ask God to help Teale calm, I ask for peace, for calm in me. I ask God to be with me and help me to not hurt His child. I tell myself over and over agin, "This is not Teale, this is not her fault." Teale is without filter when in a rage, she is out for blood and tries desperately to hurt me. There is no thought going on, she does not think how wrong it is to want to hit, kick, bite, scratch, etc. her Mom. Often I find her rages start and in the middle of it, she is unaware as to why she is raging. It's a primitive instinct that kicks in and she just fights with all her strength, not even always knowing what provoked it. The weeks working up to the hospitalization in the psych ward was filled with times like these, intense rages constantly. All we could do was to hold Teale until she calmed. It was the only way to keep her safe, our other kids safe, our selves safe and the home safe. It's not pretty, it's heartbreaking to have to restrain your own child until she can calm down, but there was not any other choice. So going home was filled with the same feelings again, would Teale be constantly explosive? We had to take the chance though, so we rallied Dr Tom and Dr Dave and told them we wanted to bring Teale home. They would be our medical and our mental support again and they knew we would be relying on the both of them heavily while we tried to get Teale stabilized. By this point in our relationships, we had their personal cell phone numbers and we kept in close contact. The two of them, Mark and I, were all Teale had. We were her team, we would either get through this and help our daughter or we would have to find a different medication and a different plan. I was confident though, that I remember. I felt strong again after the two weeks of Teale in the hospital. I had a better perspective and I had slept, something that seems so simple, until you have not had enough. We were going to do this, we were going to make Teale's life the best we could and we were going to show everyone that she was worth the fight. She is a person, she is our daughter and she needed us. I was proud to be with a man who was completely my partner in this life. I was proud of us for not letting the stress of it all come between us. We were strong separately, but together I felt people listened and trusted us even more. So we went to get Teale...  (to be continued)

The Docs, part six

I hated the psych ward. I hated everything about leaving my daughter there. The people were nice, the nurses understanding and caring but once again I was being forced to let go of control. Letting go is not easy for most Mom's. I may be wrong here, but letting go of your child who uses very little audible language seems much more difficult on the heart. I was leaving my child, who talks in cryptic puzzles that I am forced to figure out, in many stranger's care. Teale often exploded out of frustration because she was misunderstood. How would people who did not know her obscure sign language, mixed with gestures and speech that was missing so many sounds, expect to help my daughter become more mentally stable? Her inability to be understood was the factor that caused the most meltdowns. My hope had always been that as she got older and could be better understood, the meltdowns would decrease. I never blamed her for her frustration, I hurt for her. That she knew what she meant and I did not was more frustrating to me than it was to her, I just kept my feelings in check. I often felt a deep sadness that Teale may believe I just don't care when I'm not understanding her, but in truth her wellbeing haunted me all hours of every day. I knew the abstract was missing in her comprehension. I knew she just could not understand the meaning of "tomorrow" or the concept of us being "out of something." I prayed the day would come that I wouldn't shake with fear when she asked me for something I did not have immediately at my disposal. I wondered how the nurses and the doctors at the psych ward were dealing with this. Teale often would suddenly ask for a random stuffed animal or toy that she had not thought of in years, she would expect Mark and I to know what she wanted and find it ASAP. Thoughts like this tormented me while Teale was at the psychiatric ward, would they just drug her if she went ballistic? It all ate at me, yet I felt it was my only hope too. She was lost and the Lithium may bring her back to us, it may help her to be a better person. I was (and still am) always thinking things could be better. If we find the right medications, if we find the right therapies or the right doctors, maybe, just maybe, we will someday find the miracle we've been looking for. The Lithium was started, the days progressed. We fell into a routine of visiting Teale after our long day running our in home daycare. I believe the staff at the psychiatric ward was more than understanding with our family because Teale was not their typical child. They usually didn't allow much visitation from family, but Teale's unique special needs were also not what they were used to dealing with. We worked as a team, trying to help our daughter, but also giving Mark, myself, Beau and Gwenn a break from the extreme difficult behaviors that Teale had been displaying in the months prior to her hospitalization in the psych ward. We knew she would be coming home soon, that she would still take much energy and time and we were realistic that this was probably not going to be the miracle we hoped for. We knew we needed to build up our strength and get some sleep under our belts. Teale's sleep did not improve drastically at the hospital, it showed signs of improvement, but it was tedious how little she improved. Soon we were talking about discharge, even though she was barely sleeping more than a few hours a night. The thoughts were she might sleep better at home in a place she felt more safe and secure. The Lithium was building up in her blood and we were getting closer to a therapeutic level. The insurance would start to argue against Teale being hospitalized and it would be difficult to prove the need. The visits to the hospital were exhausting, emotional and draining. We would see other kids who didn't seem to have much parental support and that was difficult to watch. Kids would attach to Mark and I when we were there, talking our ears off, as if they had not had an adult listen to them in years. We were watched while we visited, it was subtle, but you felt the cameras and the stares of the staff. Were they looking to see if it was our fault? I understood, yet considering it was this very hospital that caused my daughters lifelong disabilities at birth, it made me angry to have them judge me. I know once people get to know Mark and I they realize our devotion and our love toward Teale, but to have to prove that to strangers is unsettling. Having Dr Dave and Dr Tom backing us with years of care always helps me. There have been many times we have been put in uncomfortable positions with Teale being explosive in public. Knowing Dr Dave and Dr Tom have our back helps me hold my head high. They would never let a one time incident turn into a CPS situation where our care of Teale is being questioned. That kind of relationship is priceless in our life, the trust and the care between the four of us for the better good of Teale has literally kept me sane. Teale does self injurious behavior, like biting her own arm, the bruises attract stares, it's uncomfortable for Mark and I, but it's a sad, real part of our life. So as we visited our own daughter at the hospital, I remember how at first the idea of strangers observing our parenting skills really bothered me. I remember feeling like it was unfair that these 22 year old nurses who hadn't lived half of what I had, got to pass judgement on me. It was part of the journey though and in the end, I hope we taught more than they did. (to be continued)

Catch Up

I feel like I'm constantly playing catch up. The house work that never ends. The list of errands I should accomplish. The things I wish to do for myself, for my family or for my friends that never seems to get done. Days go by and I plug through, but then I look back and wonder what I did? Some days this hurts, it kills my self esteem, it makes me feel like I'm not a worthy part of this world and I'm not contributing enough. It's tough being an at home Mom. I know many people think it's easy and they are jealous, so I'm careful and I know in many ways I am blessed to be here for my kids. But let's be honest; the dishes, the laundry, the vacuuming, the cleaning, the dusting, the bathrooms, the cooking, the organizing, the paperwork, etc, etc, is unfulfilling for my soul. I accomplish it one day and the next day it needs doing again. Some days I feel trapped by the same old jobs that no one really notices or cares that I have accomplished. And before you get yourself all in a huff, I realize that many of you not only have to do all the same stuff I do, but you also have to work an outside of the home job too! I get it, we all have our crosses to bear. I am just expressing that often I feel like no matter how hard I try, my job is never completed and therefore I never feel fulfilled by a sense of accomplishment.

So, with all that being said. I've decided life is not just about the accomplishments. I've decided to live in a way I think I kinda have been subconsciously living. But now I hope to bring that living to a whole new conscious level.

My goal for each day will be to look back and see if I touched anyones heart? That is what I want to be remembered for when I'm gone. I've never heard anyone say at a funeral "Wow, she sure kept a clean house. or Can you believe she got all her errands run?"

Believe me, I'm still going to keep trying to get the things done at home that make life run more smoothly for my family, but if there is a choice to be made between some mundane chore that can wait and a person I can touch the heart of, the choice will be simple.

I hope to touch many hearts in my lifetime....

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.