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Thursday, December 19, 2013

MIL

She moved in with us October of 2010. We thought she'd live in our home so we knew she was safe, but be fairly independent. I had been running back and forth to her home, just ten minutes from ours,  many times over the year before the move. In some ways this was to simplify our lives. Having us all under one roof would mean only one home to shop for and to clean. It would mean she was here when I needed to drive her to an appointment or check to see that she was taking her medicines and refills were not needed. That wasn't the case. Immediately after moving in, it became apparent Mark's Mom had been covering far more than we realized. Mark's strong, independent Mom was failing. Her memory was going and so were her abilities to do much for herself. Mark and I had been thinking about my getting another job outside the home. At that time I was helping a friend's family with their father who was in a steep decline of Alzheimer's, but we were considering my adding hours or finding something more regular. We had talked about how we thought his Mom would be able to read to Gwenn and help her with her schoolwork. My Mother in law or MIL as I often refer to her, had been a school teacher in our district. The thought of having an extra parent in the home to help Gwenn was somewhat appealing, after all, we often felt like Gwenn got the short end of the stick in our busy household. Teale took much of our time, Beau had a busy sports schedule and Gwenn was often left to her own devices. Gwenn was seven at the time. Having Mom here to leave her with if I was stuck in an appointment with Teale and Beau wasn't available, was handy. It turns out we weren't really prepared for the reality of it all though. Gwenn would be caring for her Nana far more than the way we had envisioned. The idea of my getting another job outside the home, quickly faded when it became clear that leaving my MIL on her own was both not safe and not healthy for her mentally or physically. If she was left for a few hours after a fifteen hour night in bed, she would just sleep more. Sleeping was her preferred activity and concerning to all of us in the family. We talked much about her Parkinson's and Parkinson's dementia with her team of doctors. I had been taking her to most of her doctor appointments the year or so before her moving in with Mark and I. We had seen the decline, but her living in our home really crystalized how bad her mental health was. Was she depressed, trying to escape through sleep? She and I had shared the inability to shake the Winter blahs every year. We both were diagnosed with seasonal affective disorder or SAD, as it is referred to. Rochester, NY is a gray place in winter, the sun barely ever peaking out from behind the clouds creates a feeling of wanting to hibernate in many people. I had always been grateful Mark understood the condition because of living with his Mom before living with me. Mark knew if I had stayed in the house for too many days in a row, he should get me out and he was good at paying attention to how I was doing during the long winter months. That role became mine with MIL, I would need to keep her active, provide fun activities and sometimes that would mean fighting her to get up and dressed and go out with me. She would always thank me afterwards for pushing her, but the reality of becoming the parent of a parent is harder than most realize. The mental fatigue taking care of MIL was often exhausting. She was the least nice to me in those early months, turning on the charm for Mark when he got home from work, my feelings were often hurt. After all, I was there for her, day in and day out, but she argued or was passive aggressive toward me by ignoring requests to stay hydrated or get out of bed or even reminders to use the bathroom. Mark was gentle and kind and grateful to me, he kept me going by his love and support. As the months moved on MIL's demeanor changed. It wasn't sudden, but ever so slowly as she felt better because she was getting more interaction, love and care, she slowly became kinder to me. Those early months were the toughest, to let off steam I'd call Mark or text him and his response was always the same, "I love you." It was all I needed to keep going. MIL and I fell into routines, going to St John's Home, a senior care facility, to do sing alongs, I would take my friend's father with me also. He was a charmer and loved cheering up the "old ladies." His Alzheimer's was progressing rapidly though and soon it became apparent I would no longer be able to care for him and my MIL. They got along well though, so there were times I would take them both out and his cheery disposition helped both MIL and I feel better. I have many fond memories of those times. As the time passed and spring arrived in Rochester, I remember how it occurred to me that MIL had barely gone outside in her later years when living alone. There had been no outside furniture and she had not cared for her yard or done any gardening. So in my care I decided to get her outside more. On chilly days, I would bundle her up and set her up with a book in the sun and there she would sit, watching the kids play and the neighborhood come to life. She'd fight me about going out, but once outside, she'd tell me how lovely it was. As spring turned to Summer the back porch became MIL's second home, a rocking chair, a book, a glass of iced tea, she'd watch the many birds that visited my feeders or the kids playing in the pool or on the trampoline. MIL would watch me garden and tell me how beautiful my yard was. I knew those times were special, she was at peace. Our time together was precious in the end. I know Mark appreciated my taking care of his Mom and I appreciated the healing I experienced in my relationship with her. Our journey to the warm relationship we had in the end was slow, but God works in mysterious ways and in His plan, there would be peace...

Monday, December 9, 2013

Happy 15th

The night you were born I had no clue,
What on earth I'd learn from you.
The days I'd worry,
The times I fret,
The many people that I met.
Today you turn that magical year,
15 you are, it's finally here.
It's been a journey,
It's been a ride,
I've held on tight and I've wished to hide.
Someday I might finally see
The answer to your life was me.


Thursday, November 21, 2013

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)

Wednesday, November 20, 2013

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)

Wednesday, September 25, 2013

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....

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.

Monday, April 29, 2013

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)

Wednesday, March 13, 2013

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...

Wednesday, March 6, 2013

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~

Saturday, February 23, 2013

The Doc's, part two

Then there is Dr Tom. Dr Tom and I have fought like a married couple. Mark and I have had stages with Teale that were wrecking us all, but one in particular put Dr Tom and I at odds. Dr Tom is Teale's psychiatrist, but quite frankly he might as well be the family psychiatrist. At one time or another he has helped with each of us. He doesn't bill for all our care, but he is a smart, caring man and he gets that we all live this, not just Teale. He knows Mark and I need to stay stable and healthy to live with our challenges. He knows Beau and Gwenn struggle with loses of normalcy too. He has seen us all demonstrate post traumatic stress syndrome in stages of Teale's mental illness when being on our guard constantly is our only defense. Dr Tom is empathetic and extremely intelligent. He knows the options for care out there and he understands the medications he prescribes with amazing insight. When Teale was about three years old the behaviors started escalating. I was pregnant with Gwenn and all of our world was crashing. Teale had become defiant and explosive, her sleep sporadic and her behavior exhausting, unpredictable and often violent. Luckily for me, I was on the search committee for a new minister at our church. The woman we had appointed as the chair of the committee was a counsellor and a personal friend of Dr Tom's. As God often does in my life, I was in the right place at the right time. I was sharing our struggles with my friend and the chair of the committee one night after our meeting ended. She listened with care and then said she would contact her friend Dr Tom for me. Within days I had our first appointment. I often wonder where we would be today had Dr Tom not come into our lives. He and Dr Dave work hand in hand to help Teale. They are a dynamic duo and when I am in trouble, as in, when Teale is in a rough patch, they are both there for us. Texting them is common in this relationship, they have both come to respect my opinion and know that I will not pull them in unless I am truly struggling. Dr Tom and I had had about three years under our belt when Teale's most intense mental break happened. She was in the first grade and stopped sleeping. I know most will find this hard to believe. Many will think I am over exaggerating the truth, but I kid you not, Teale went from sleeping 10 to 12 hours a night, to sleeping two or three hours a night. After she woke for the night, she was "ON." Mark and I were fried by a couple of weeks of this. We had a daycare to run everyday for ten plus kids and we had Beau and Gwenn too. The school was finding it tough to believe what we were telling them, after all Teale was fine at school, her usual full of energy self. Thank goodness Dr Tom and Dr Dave didn't doubt what we were saying. We tried every sleep aid safe to a 6 year old and many that were questionable too. She was taking adult prescriptions like Ambien, with little to no relief. Dr Tom prescribed and we kept hoping the cure was coming, but every night was the same. Teale would sleep the first hour to three after putting her to bed and then be up the rest of the night. I never felt like Dr Tom or Dr Dave doubted us, but after a month of such little sleep I was becoming doubtful of myself. My mental state was skewed. I was not sure what was real anymore and my very core ached for relief. The school finally started to see it too, Teale's behavior was escalating and she was having spells that looked like seizures. The day I told Mark "I know I won't do it, but I'm as close to suicide as a person can be." Dr Tom and I fought. We had been in touch with both doctors multiple times a day. The exhaustion was simply overwhelming. Our extended families were not there for us and our friends did not know how to help us. There was no relief in this nightmare. Mark and I against the world and quite frankly, the world was winning. Then Dr Tom and Dr Dave saw what needed to be done, the solution was to hospitalize my six year old, severely disabled child. We were to take her to emergency and have her admitted into the child psychiatry ward. Teale, who needed sign language for understanding, who wore a leg brace and a hand brace to help with her cerebral palsy. Teale, who had hearing aids that cost a fortune and unless you knew the signs, she would try to destroy in a rage. Teale had GI issues and her speech was not easily understood, her frustration escalated with misunderstanding. Teale hates being touched, so her personal hygiene was a challenge to work through. She took many medications and often those meds had to be administered in a forceful manner. To have strangers, who did not know and love her do this, scared me. These were just some of the thoughts going through me. Dr Tom was asking me to hand over my daughter to "the R wing" as it is commonly referred to. One Flew Over The Cuckoo's Nest went through my head, would Teale be restrained, would she be locked up into a padded room? What monster would suggest this as the solution to my 6 year old's sleep issues? But her seizures also scared me and that was the deciding factor. I knew of children who had gotten into seizures that could not be stopped and they had passed. Teale needed sleep or her seizures were sure to get worse. So while Dr Tom and I fought over this decision, Mark tried to calm me and help me see it was our only option. I was mad, no I was FURIOUS. God was letting me down and I could not understand why my daughter suffered so much. What God would allow this? Why us, what had we done so wrong?   ~to be continued~

Thursday, February 21, 2013

The Doc's

A doctor visit with Teale can be a challenge. She may not cooperate with the directions, she may explode at just the idea of walking into a doctors office. Simple tasks like taking her blood pressure, weight and height can take much negotiation. A doctor not giving Teale the time she needs to process what the doctor is asking her to do or a doctor touching her without fair warning, can take us to square one and the appointment may need to be abandoned and rescheduled. I go to appointments knowing we may not accomplish what we hope to. I have many, many memories of appointments gone bad. Teale and I  have been seeing doctors and much more than the average person, since before she was born. From that first ultrasound where the discovery was made that her stomach had not closed in utero, there have been many specialists in Teale's life. Doctors are people, there are good natured ones who click with Teale and there are ones that I wonder why they chose the profession they did. Luckily for Teale, we have two very special doctors in our life that have mostly managed Teale's care. Her pediatrician from birth was a great guy, he was bold, outspoken and caring beyond measure. His love of children was evident and his management of care extended to the whole family. He always made me feel like I was an important part of my children's team, even in the areas I had very little experience in. He valued parent's input and taught me advocacy from the start of my children's lives. So when he called me one day to tell me that he and his wife were moving out of state, my heart broke. I seriously wondered how I would ever replace Dr Matt? I even joked with Mark that maybe we should follow him to his new location. After getting over the heartache of his leaving us, we stuck with his recommendation and started working with his replacement. Dr Matt had told me he picked this young, smart, caring guy and he thought we would work well together. At first, I wasn't sure. I liked him well enough, but he was green and Dr Matt had been seasoned. My life was complicated medically for my daughter Teale. Dr Matt had been there through my pregnancy with Teale. He had been there at the horrific birth and knew the pain we had endured. He had watched Teale grow and seen the work we put into making her life all it could be. I just couldn't imagine someone new grasping what we had gone through in those first three years of Teale's life. But as life has a way of doing, it has all worked out. Dr Dave came into our life and his ways, although quite different from Dr Matt's, have grown on me. He is not nearly as in your face as Dr Matt was, he's gentle and kind. Dr Matt was rough and direct, but that is much how I am, so I appreciated his blunt honesty. Eleven years have passed, much like a blink of the eye and in those years Dr Dave has become my children's pediatrician and an intricate part of our team of medical support. We don't hang out together or have double dates with our spouses, but he is there for me, beyond a shadow of a doubt, much like family should be. I can text him when I'm worried and something is wrong with one of my kids and he will answer. We have built a trust and he knows I seldom overreact or pull him in unless I am truly concerned and rightfully so. He has stuck by us and given us hope in even the most hopeless times of our life. Dr Dave has managed all the doctors in Teale's life with professionalism and grace. He has calmed Mark and my fears, he has helped us find solace and he has prayed for our peace. Dr Dave has been more than just my children's pediatrician, he has been a dear friend. We work together well and our trust in each other is much like a marriage. We count on each other to put together the pieces my children's physical and emotional health. He is the type of person everyone looks up to, calm, caring, loyal, thoughtful and smart. I feel blessed to call him our children's pediatrician, not everyone finds someone who sticks by then in thick or thin, but Dr Dave has and for this alone, I am forever grateful.         ~to be continued~

Sunday, February 17, 2013

24 Valentines

This week was Valentine's Day and I celebrated my 24th one with the love of my life. At twenty one years old I started dating Mark. On our first Valentine's Day together he asked me to marry him. We had been dating less than two months, but as cliche as it sounds, when you know, you know. Celebrating that day means much to me, as it was the start of my life with a man I still find extrodoary. Mark is kind, patient, smart, loving, talented, giving, loyal and beyond a shadow of a doubt, my rock. He lifts me when I'm down, he makes me laugh and shares my same twisted sense of humor when things are tough. We are steady, even and consistent in our love and in our friendship. We barely ever argue or even quarrel. He is the person I choose to be with when given the option, I enjoy his company and have grown more fond of him as we age. We worked together for over fifteen years running our in home daycare. We raised many people's children and then also our own. I can honestly say I enjoyed working with him immensely and still miss those days. Mark is a hard worker and we share the same priorities in life. Our marriage has always come first. He and I need to be strong to care for our complicated family. I have often said to people that "we are selfish." We work hard at staying connected, at staying friends and enjoying life beyond our children. My God has always been first, but Mark is my close second. Our relationship is a covenant with God, we are in our marriage with Him. So as we age and things change in our life, my God and Mark are the only sure things I count on. My children are growing, our oldest son applied to five colleges just this past week. He will be moving on and living his own life. Of course I expect and hope our son will stay close and always be a part of our life. But children grow and the ultimate goal is to raise them well, so that they are contributing parts of society. So if we reach that goal and the children move out to start their own lives, what is left? I have seen the breakdown of many marriages. Couples who suddenly seemed to have nothing in common after the child raising years. Couples who slowly grew apart and just couldn't get the spark back. Couples who thought life would be easier or more fun with someone new. We have purposely worked hard to not become any of those couples. We have been creative in our dating each other, even when times were tough. Even if our middle daughter Teale was spiraling and could not be left in the care of others, we would find a way to steal precious time together, just the two of us. Many dates in bad times were at home, a nice dinner, our Wedding china, candlelight and music in our own dining room after the kids went to bed. Daydates, where we steal a date together while the kids were in school became the norm after we closed our in home daycare. Respite was used too, people who truly could handle and be trusted with Teale in our home or in the community. We also would date after hours, putting the kids to bed ourselves and then leaving them in care of someone who would call us if anyone woke. Our cell phones became a way to get some freedom and see a band that started late or just go sit someplace different and talk about anything but the kids. We built a good support and as Teale got older and "easier" our nieces also often helped us. We forced ourselves to use overnight respite. As strange as it has always been for me, Teale has gone to a local respite home here or there since she was about five years old. Our marriage hasn't been easy because we are just lucky, our marriage has taken  work and we made it a priority. So as we planned our Valentine's Day date, I looked back on how we have evolved. We were once a young, happy couple with the world to conquer ahead of us. We may not have conquered as much as we hoped to, but when I look at my life with Mark, I am proud of what we have been to each other and I just know "the best is yet to be...."

Tuesday, February 12, 2013

The Unseen Plan

I have watched as my Mother in law has become a shadow of her former self. I have heard her struggle with words, the thoughts just won't come. I have worried that this disease will someday take grasp of my husband, taking away the dream of our golden years together with grandchildren around us. I have seen her become fragile, childlike even. Her strong, independent, colder personality gone. This woman is warmer, kinder and more appreciative of my care as time ticks on. When I first met her I was hurt by her distance toward me. She didn't seem to want to connect. Mark was apologetic, I remember him calling her "a weird lady." Mark had a girlfriend before me that was very intelligent, in her masters program and obviously an independent woman. She was planning on pursuing a career before anything else. I  remember feeling like I was a disappointment to to Mark's Mom. Education was more important to her than it was to me. I had chosen to leave college to be a Nanny because that was where me heart was. My Mom was disappointed also that I left college, but knowing I was happy, she soon supported my dream of opening up an in home daycare. My Mom allowed me to run the daycare in her home, the sound of happy children filling what had been an empty house, once again. The children called her Grandma & for many of them she was. I worked long hours, but I loved my job, kids had always been who I wanted to be with. I love the way children are hopeful, full of life and promise. I loved caring for people's most precious gifts from God, knowing in my care they were safe and loved. It meant the world to me when friends or family would ask me to care for their children. In turn, I was also hurt when friends did not seek my care. I took it very personal, I knew I had chosen this career for just that purpose, to love and care for family and friend's children. I was helping to build self esteem, creativity and give children what every child deserves, a place that was fun, loving and kind. I wanted "my kids," the daycare kids, to enjoy their time with me. As the parents said goodbye, I wanted them to know that their children, although they would prefer being with a parent, were in good hands. I built relationships with families that to this day still exist. I have ex daycare children in their twenties and thirties who still connect with me. Watching them grow and become productive people in our society is a real kick. Some don't even remember their time with me, as they were too young to have memories of it, but their parents have kept me alive in their hearts. I worked with children because I knew that was where I belonged. Older people I did not feel I had a gift for. My grandparents were a different story, my Grandmother was one of my best friends. But as a younger person I found the end of life cycle very sad and hopeless. I could never imagine working with senior citizens. But here I am, my Mother in law is 85 years old and quit frankly declining. Her Parkinson's and dementia is taking it's toll on her aging body. She has been with my family for two and a half years. It is amazing to me that as a younger person I could have never imagined me as her caregiver but in many ways, it has come to me very naturally. Mostly because she is very childlike, she needs much care and encouragement. I have joked with her that I had always wanted a forth child, but I always dreamt my forth child would be a baby boy. I think the parallels of children and senior citizens are incredibly similar. I could not have seen this coming though, moving my mother in law in with us was truly a gift of heart. I knew my husband needed it, he needed her to be in my care because he knew I would go above and beyond for her. That was the biggest compliment of all, his trust in me to care for his aging Mom. When people ask me how we do it, how I do it, my answer is the same, because I love Mark and this is what he needed. He is loving and appreciative of my being here for his Mom. He knows she and I were never very close in the years we could have connected. The years Mark and I struggled, she barely reached out to help us. I never saw her try very hard to build relationships with any of our children. I remember feeling sad and disappointed at her lack of interest in especially Teale's life. But as time marches on, as she has become part of our immediate family, she has healed much of that pain I felt. Her connection with my beloved Teale is sweet and their abilities are very similar as Mom declines and Teale matures. There are even times Teale helps my Mother in law. The two of them can enjoy an American Girl Doll catalogue for over an hour, discussing the details of the dolls and what each of them likes. My heart has opened more to my Mother in law because hers has. No, she is no longer independent and strong. She no longer can  relieve some of our stress by helping us, that opportunity has passed. Really, we can no longer even have conversations to build our relationship. She is mostly stuck in silence but Gods plan has worked, we now have a love, that I will feel forever.

Monday, February 11, 2013

Stuff

Working through stuff is never easy. I've learned we are never really done working through the pains of our past. Some people are better at letting things go and moving on. Some hold onto anger and loss with both hands, holding it so close to their hearts they are rotting inside. For me personally it depends how much the stuff still effects me. I look at my daughter everyday and I still wonder "what if?" The trying to come to grips with what her life is and how it effects my life is quit frankly, a constant. Whether it is in a formal setting, like a counsellors office where I am sharing my deepest feelings or it is in my own head. I regularly debate ways to get through to Teale and help her more effectively. I am often occupied with how to improve her quality of life. I work through feelings in informal ways too. Talking with my husband or with friends, who can empathize and help me come up with solutions or rejoice in an accomplishment or a blessing. The loss of what Teale's life should have been is always in my face, therefore I am always working on it. The losses of my childhood have faded. I remember the good, more than the bad. I worked through that stuff so long ago, it barely ever haunts me now. I believe that is mostly because I have built a good support network and am surrounded by much love and caring. My own marriage is strong and fulfilling. I feel safe, loved and secure in my life with my husband. Sure, I go through times when I'm questioning if we are really as happy as I think, but I have found I go through those times when an outside factor has crept in and corrupted my sense of security. When friends and family members have divorced, I have become insecure and clingy. I know this about myself and Mark has learned to live with it too. I may ask him if he loves me, if he will always love me, if we are really going to "make it" several times in a day. He has learned to just reassure me and help me work through these times with love. The feelings pass faster with more hugs, than with criticism for my sudden strange fears. Mark knows my father's infidelity comes out when I hear of a couple whose marriage is in trouble. Especially if the marriage is ending in infidelity. I may even question Mark's loyalty to me in such a time. Even though, I know in my heart that Mark is faithful and good. He has learned, it's not about him, it's about what I have lived, therefore he is not hurt or angry. I believe that has been a lesson Mark and I have learned well. Often it is our own "stuff" that creeps into our marriage and causes us pain. Mark has never caused me to doubt him in our marriage and I think he would say the same about me. Stuff creeps into good because your memory of bad is so strong. I have had many more good experiences in my life with Teale, than I have had bad. Unfortunately the bad sour the good so intensely. I often can't recall the times someone was loving and compassionate toward us. Ironically, I can instantly recall the grocery store meltdown & the person who treated me like a bad parent. The people who were cruel come to mind faster than the people who stood by our sides with compassion, empathy and love. This frustrates me about myself. Why do I seem to have to work harder to remember the good stories. Maybe this is a skill I have yet to master, empathizing the good in my life. Stuff, stuff creeps into our hearts and hardens us if we let it. It makes us remember things we wish we had forgotten. That's why we don't want to work through our pain, working through it can make it hurt more before you finally release it. I have had my fair share of stuff to work through though and in the end I always find it is easier to feel it and release it, than to let it rot you from the inside...

Monday, February 4, 2013

The Lessons

Fishing with my Dad is one of my favorite memories. He never treated me like a girl, I was just me. His caring and teaching side would come out on those adventures. We sat side by side, quietly waiting for the big one to bite. He liked how I wasn't squeamish about hooking the worm or taking the fish off the hook. I liked the smell of his pipe and the way I felt sitting next to him, safe, loved and peaceful. The good times with him were the best. He was funny, caring and patient. My favorite fishing memory was when I went ice fishing with him. The fish seemed to bite at every drop of the line into that dark, cold hole. The memory of the fire he built me to keep me warm still clear. The thermos of hot chocolate just for me, hot chocolate never tasted as good. His friends were there too and they seemed to get a kick out of my Dad bringing me along. I was bundled up in a bulky snowsuit, extra mittens packed in case I got wet. He seemed prepared to make sure I was warm. We had a sleeping bag I could slip into also. I was his youngest, his forth girl out of five children. I looked much like him and was a tomboy in his presents. I think I always knew it had been a disappointment I was not a boy, but that was overcome easily as we became buddies. I also knew I was a big surprise, five years between me and my next sister. Dad was sweet to me, liking having another little one as my older siblings were becoming more independent and well, teen agers, with attitudes. He paraded me around like a prized possession at times. I felt special to him and loved. We both enjoyed nature and animals. He would often take me on hikes through the woods to just catch a glimpse of a deer or a pheasant. He taught me facts about birds I still retain today. He was an avid bird watcher and loved teaching me the names of the birds. We always had bird feeders and I still have one he made out of redwood 40 years ago. He hunted, something I had no desires for learning, but had I, being a girl would not had been an issue to my Dad. Somehow I knew my being a girl was never seen as an obstacle to him. He was not sexist and that made it easy to like being with him and learning the things my Dad knew. He taught me how to fix things, how to be independent and not need to rely on a man. He taught me strength and in the good times I knew his love for me was infinite. Those are the memories I hold onto. I dream of him healthy and whole, sitting by a stream waiting for the big one to bite. Someday I hope to sit next to him again...

My Dad

After my suicide attempt, life went on and I didn't think too much about it. I know I shared it with a few close friends, but I'm not sure when or how I told them. It was tough admitting. I felt weak,  embarrassed and scared that people would lose any respect they had for me. That was 28 years ago and much has happened since that time. As a teen I went to counseling, trying to work out my issues surrounding my dysfunctional family. As an adult I have gone to counseling much, checking in from time to time. Mark and I saw someone after finding out about Teale's gastroschisis in 1998, as there was a 30% chance she would not survive. But the two times I worked the hardest were long before I was pregnant with any of our children. As a young adult before meeting Mark and shortly after my Dad died in 1992. My Dad's death was a surprise and I struggled to accept the finality of it. I had all but lost contact with him in the years after meeting Mark in 1988. My husband never met my Dad. He had been in a very bad stage of his mental illness and quite frankly I was taking a break from his sickness and therefore also from him. He displayed classic bi polar symptoms. I'm not sure he was ever officially diagnosed, but now after being Teale's Mom and learning much about the illness, I can see the similarities. His second wife, the one he left my Mom for was much younger than he. She was always nice to me, but I still found her tough to like, after all she knew my Dad was married when the affair began. As fate would have it, soon after their marriage, she was diagnosed with brain cancer. The timeframe of these evens are unclear. As I remember she fought the cancer after surgery and it went into remission for sometime, but soon after came back with a vengeance. Linda went into a vegetative state and was placed into Monroe Community Hospital during one of my Dad's bad stages of bi polar. He could barely care for himself, much less his ailing wife. It was sad to know my Dad was failing and I had no control, but risking the good thing I had found with Mark was not something I was willing to do. I stepped away, thinking there was time to work things out with him. I stepped away knowing I could not solve his alcoholism brought on by his bi polar. Had I had the knowledge I do now, I may have had a mental health arrest done on him. His behavior was erratic, sometimes I would call him to check in or stop by and it would be pleasant, other times it was painful, hurtful and sad. I was well aware that he was just sick. I accepted it was not him, it was not his fault he had this awful disease but I also knew I had no control. I attended Alanon meeting from the time I was young. It is a philosophy of Alanon to accept that you have no control over your loved one who suffers with alcoholism. I had worked hard at letting the alcoholics in my life not destroy me. Mark and I started dating in December of 1988, by Valentine's Day 1989 we were engaged. We set our Wedding date for August 12, 1989 and I made the decision to not invite my Dad. I would have my sister's husband walk me down the aisle. My Dad could easily show up drunk and belligerent. I just didn't want my Wedding to be filled with drama. So in 1992 when he died from a heart attack (brought on by alcoholism) with a drink in his hand, in his favorite chair, by himself, I should not have been surprised. Funny thing is, I was, I was heartbroken inside. Outside I was strong, barely any emotions. The call came from a stranger to me, his neighbor found him dead and somehow knew how to reach me. I had to call my siblings. Being the youngest of the five, Dad had been in my life the least. I have good memories of him. I know he was a good man who loved us all very much, but his illnesses took him over. Telling my siblings and then subsequently dealing with his funeral and the loss I experienced was all pushed down, deep into my soul. It was tough to grieve the loss of a man I had not even invited to my own Wedding. I had guilt and regret and instead of feeling my pain, for the first time in my life I started eating for comfort. Mark and I had bought our first house in January 1991, but after my Dad died, my cooking seemed to turn to comfort. I started gaining weight and was not seeing the connection to the loss of my Dad. Suddenly one day I had an epiphany, I was stuffing my feelings. I told Mark what I thought was going on with me and that I wanted to seek counseling. Mark understood and supported my feelings, so I found a counsellor and started the heavy work of finally grieving the loss of my Dad.

Sunday, February 3, 2013

Sometimes

Sometimes the purpose is unclear
The time goes by and the dreams vanish
The love you want to share gets lost in everyday struggles
The people you want to see are not there
The words you wish you said, disappear
The things you thought you would accomplish, are unreachable
You age, wisdom is found, youth is gone
Regrets fill your head
Love fills your heart
You hope for second chances
You hope for dreams lost, to come true
You hope the pain of reality lessons
You hope burdens ease
You see suffering and want to help
Your purpose is unclear


My Secret

If you know me, you know I believe in God. I believe that He sent his Son for the purpose of saving our souls. I believe that there is a Heaven and all the love ones I have lost are there enjoying an intense love and peace. I believe in prayer and I pray often for many. I believe in destiny and in making your life better by believing in the powers of your own heart. But I'm not always good at these beliefs, I waffle at staying on track. I pray for others but forget myself. My relationship with God has been strong and it has been weak. I sometimes have trouble believing I am important to Him. I have struggled with why my daughter suffers and why God lets her. I have hated God, knowing it is ok for me to, but wondering if I will ever love Him again. God has been a constant in my life. Since I was very little I believed in a God helping me, watching over me, loving me. I think I grasped for Him because I suffered much. My childhood had many challenges, many heartbreaks. I hoped God would help me not live the same heartbreaks as an adult. I saw divorce through my parents, betrayal of love by my father when he left for another woman. I saw my sister suffer through a marriage that had alcoholism, addiction and abuse. Her husband beating her and her forgiveness and the cycle continuing over and over again. The drama of those days, of those months are still clear in my mind. I saw mental illness and depression, alcoholism, drug addiction, sadness, loneliness and despair. There were times life was too much and I felt alone and confused by the purpose of it all. I was desperate for love, wanting to feel cared for unconditionally, wanting to be seen, really seen but feeling like I was a burden and invisable. My family was overcome by problems when I was a teen. Being the youngest of five I watched three of my older siblings turn to drugs and alcohol to ease their eternal pain. My Mom turned to alcohol and although she was a good woman who had a huge heart for others, she seemed to be drowning and I often felt alone. The pain took hold of me one night and I decided my life was not worth it. I decided to end my suffering. I just wanted to die. I had friends who were like family, people who loved me I could have turned to, but the pain was deep and I was done. I truly wanted the pain to end, I wanted to go to God, even if it meant I would hurt many in the process. I barely talk about this, I doubt my son or my husband's family knows I went through this time. My daughters are too young to share this with. Of course Mark knows, Mark is my everything. Mark is the man I was dreaming of when I was suffering alone. He is what I hoped my life would be, loyalty, consistency, peacefulness and most of all unconditional love. As a teen I was lost, I couldn't find my purpose. No one seemed to see me, to care where I was, what I was doing and most of all how I was doing. I lived in a house of drama where bad behavior got attention and good behavior went unnoticed and unappreciated. Three of my siblings were in need of help constantly. My Mom seemed to suffer from loneliness after my Dad left. I felt like the forgotten one, the good one who was invisible in the family. I couldn't help my Mom, my Dad was a classic case of disappointment. He would make plans with me only to break them last minute or just not show. The dream of being part of a family who loved me seemed distant, unreachable. Lost in their own issues, I felt alone in my pain. After many days of contemplating it, I wrote a note saying goodbye and took a bottle of Tylenol and Nyquil. Falling asleep was peaceful and I did not expect to wake up, but I did. I was sick to my stomach and my Mom thought I had a bug. I didn't tell her the truth. Why I woke up I'm not sure, it should have been enough to kill me, yet it didn't. I have thought about that moment much, the desperation of just wanting to die, the feelings of hopelessness. I didn't talk about what I had done, but I think waking up changed me. Somehow God wanted me to live, there was a bigger purpose to my life that was unseen and God wanted me to live it. I have shared this with very few people. Many believe suicide is a selfish act. Many believe it is something only the weak do. I believe I am a strong woman and I have lived through much, but there are times I have debated suicide even as an adult. Even with the love of Mark I have thought about ending my life because the pain of Teale's mental illness has put me over. There have been times Mark and I have felt alone in this world. We have suffered through unbearable mental anguish. Teale has had stages of her bi polar and other mental illnesses where she has all but stopped sleeping, for months. Those times I have actually gone back to that night I took the pills and hoped to never wake up. Those are the times I wish our families were there for us. Times where the pain was so unbearable death seemed like the only answer. I once said to Mark "I know I won't do it, but I'm as close to suicide as I can get." The truth is I shouldn't be here, I should have died when I was seventeen. I took a bottle of Tylenol and a bottle of Nyquil, it should have been enough. I was given a second chance, I was given a chance to see what my life would become. I married the man of my dreams and he has been everything I hoped for, even after 24 years together we still love deeply. But I see the irony in my life too. My hope to pick a man who was not an abusive alcoholic, after seeing my sister go through Hell, happened. My hope to pick a loyal man after seeing my Mom hurt by my Dad happened. My hope to pick someone who didn't have addiction issues happened. My hope to marry a man I would love eternally and who would show me the same love, happened. But, and is there always a but in life? Teale happened. Teale has torn my heart out at times, she has been abusive to me, she has brought chaos to what should have been a peaceful life. There have been times I have actually thought about killing the two of us to give my sweet husband and other two children a chance at peace. I have been sleep deprived to the extent of this sounding like a rational idea. The fact that I can talk about that pain is a strength, not a weakness in my opinion. Because until you live the extreme pain both mentally and physically Mark and I have lived, you will never understand how desperate a person can be for peace. So yes, I believe in God, I believe He is with me and He saved me that night I wanted to die. I believe my life has changed some hearts and I believe I have a purpose. Although still unclear, I do believe I am worth getting to know and love because in the end I believe I am a person of value. After all, God wanted me to stay here and he gave me Mark to get through the tough times with.

Thursday, January 31, 2013

OBGYN, warning; this contains explicit content



At eleven years old Teale, who is scattered in her mental skills from about 2 years old to age appropriate, depending on the skill, got her first period. It was shocking and yet expected, the signs that it was coming were there. For some reason, God only knows, girls with cerebral palsy often develop faster than typical girls, so we had actually been on alert since she was about 8 years old. We had discussed it with her pediatrician many times and we had some plans on how we would deal with Teale all worked out. We had even seen an endocrinologist and our pediatrician had talked to an OBGYN. It was Summer when she started. Summer, the only time of year she can swim in her pool from The Dream Factory. Summer in Upstate NY is short, we are lucky to get warmth for swimming all of July and August and maybe a few weeks in June and or September. At 11 Teale would swim for hours and hours. It brought her joy and peace, it calmed her soul and also our souls, her family. There is a saying in our home, "when Teale is happy, all seems good in the world." Swimming makes much good! So on the day of her first period luck would have it that we had a graduation party to attend at a neighbor's house, who also had a pool. Sometimes I just shake my head at the things we have to get through. Teale LOVES a good party, she loves swimming and on that day we had hope for fun with neighbors and friends. It is not always easy to take Teale to parties, she can get overwhelmed or think a younger child is staring at her and have a meltdown. Often, Teale is correct, little kids do find her intriguing, but as she gets more and more upset about them looking at her, she becomes even more exciting to look at! It's a horrible catch 22 in our life! This party had promise though, Teale would swim, it was with many neighbors who knew and understood her struggles, kids her age would be around who cared about her, plus Mark and I would be able to enjoy the company of other adults! Our life is so often isolating and back then it was much more so, that a party with other adults was a rare treat. The days twist though put a huge cramp in things. How would we explain to Teale that she could not go swimming? How would we keep her from telling EVERYONE she was bleeding? She was not scared like we had feared, but her openness was somewhat mortifying to her older brother and we worried about her telling his friends also. That was just the beginning of our worries though. We had the worry of how would we deal with this every month without warning, where would Teale be when it happened to her and who would help her? Teale only uses one hand, so her ability to deal alone was impossible, she needed help. She was also talking about it constantly and the embarrassment that this could cause all of us in public was concerning. She hated the feeling of the pads and would rip them off, leaving them just about anywhere. She fought with us about going to the bathroom to check the pad or to replace the one we found hidden under the couch. We worried about clothes, furniture, bedding, the whole situation was a complete nightmare. I was constantly doing laundry and soaking clothes in sinks. I was quite frankly overwhelmed and mad at God, after all, why Teale? It was becoming more and more apparent as she grew that her life would not miraculously change. She would not suddenly be mature enough to be a wife and a mother. My concerns also included the possibility of her being taken advantage of. Her development was just down right terrifying. An 11 year old with the mental capacity of about a 5 year old in most situations. After just days of dealing with this, I knew we needed help. I plead to our pediatrician that this was putting me over the top and I wanted to get Teale on birth control ASAP to control the timing and the length of her cycles. Keeping her out of the pool was all but impossible, keeping my house and belongings safe was also. I felt like God was just messing with us because at the time I just couldn't take much more. Luckily our pediatrician listened to my desperation and we saw an OBGYN. Ironically at the same office I went to and had gone to for all my pregnancies and births. I don't blame my OBGYN office for Teale's botched birth, I blame triage at the hospital she was born at. So, I have continued to go to the same OBGYN and honestly, they treat me very well, maybe because they do have some guilt? Anyway, the appointment was set up and since I had no clue what to expect, I insisted Mark join us. For all I knew there would have to be a physical exam? Luckily that was not the case and still is not to this day. Apparently Teale will not need an exam until she is 21 years old. Well, long story short, Teale was put on BCP and we had many issues with breakthrough bleeding, so some months she bleed at least 14 days of the month. The laundry, the frustration lessened, but it was still very difficult. If you have ever been on BCP, this can happen until your body adjusts, but Teale's never adjusted, so the nightmare continued. Then the OBGYN finally decided to switch pills and after a few months Teale had nothing, no periods! We were thrilled, but concerned if this was healthy? Anxiously, I shared the news with her doctor, fearful she would say we had to find a different prescription. But she was as thrilled as I was and said it was fine! So for years now it has worked, but there are health risks with being on BCP for a long time. Teale has some issues with blood pressure and her weight is high and difficult to maintain with all the medications she is on. This is working, but the concern over how long can we stay status quote and not cause harm is there. This past week I attended her annual OBGYN appointment and I asked the question, can we have Teale sterilized? Heartbreaking, I stood there thinking that I sounded like a monster. I felt transported back to the 1950's when all special needs people were sterilized. I wondered what the doctor and what her "green" intern by her side thought of me. I ached deep inside my core, even though I knew Teale could not handle a pregnancy, a birth or take care of a baby, it hurt beyond my expectations. These are the things Mom's like me have to think about, these are the things that are so unfair about her life. She and I should not have to worry about the outside world, about her being taken advantage of and then our suffering the consequences of that. But quite frankly, I am a realist, I believe in addressing problems proactively, not reactively. I don't want to ever have to make the choice of Teale's life or an innocent baby. I have time, I will not jump on doing anything immediately. I need time to process my pain and this decision correctly. It may take me many years to figure this out. In the meantime, I now know my choices and can ask questions. I also can process my pain, my pain for Teale that she may never fully appreciate the joy of being a mother. My pain for myself that my daughter will never have the chance to hold her own bundle of joy, as I held her. Time is what I need, time to work through these feelings and make the right decision for all.

Wednesday, January 30, 2013

Pain

Pain. It creeps into my life at the strangest times. A doctor telling me Teale's weight is too high or a teacher sharing a progress report, which seems to show no progress at all. Things I think I'm "over" can surprise me and I find I am back at the birth, reliving it, aching deep inside my core. I often wonder when I will get at peace with this? When will it not hurt anymore? I recently realized the answer is never. I will never not wish things were different. I will never not wish the doctors had pulled her from me at the first sign of stress. I will never not be mad at myself for not advocating harder in that triage room for Teale's safety. Her life was changed by incompetence, by human error and mostly by pride, a resident trying so hard to prove herself correct, she forgot a baby's life was at stake. She is the one I think about the most in those dark moments when my heart aches so much I think it just might explode. I think about that young, full of knowledge, but not common sense resident who told me I was not in labor because their machines were not picking up my contractions. I wonder where she is now, I even dream about seeing her again and telling her the hell she caused my daughter and my family. I imagine her still practicing medicine, still living her dreams while ours were shattered. I wonder what she remembers. I wonder if she learned from our catastrophe or even thinks about us? When Teale was first born I was apologized to by a few doctors, but not by her. The morning after, with just me in the room, a confused, overwhelmed Mom, the triage doctor, who oversaw that resident, sat in a chair and told me how sorry he was. His face still clear in my memory as I stoically told him his words were not enough. I was medicated, I was in shock and had barely processed the events of the night before, but I knew it was bad. His apology confirmed it, it was human error. I wish that moment never happened because I believe that is possibly the single biggest burden I carry, confirmation. Confirmation that Teale could have been healthier, happier and lived a normal life had they gotten her out of me faster. But it's too late, the past is the past, I need to focus on today, I need to let it go and move forward. Many, many times I have thought those words. I have tried to get at peace by prayer, by talking, by writing, by therapy and even by medications. Friends and family will tell us what a great job we have done, what a Blessing Teale's life is. I have worked hard to let go and move forward. I am human, a am the Mom of a severely challenged child who is growing into a severely challenged adult. I am getting older with her and quite frankly, sometimes I am just worn. The worry for her future is astronomical. Who will love her and care for her like me, after I'm gone? I once heard a horrible saying that only a Mom like I can relate to "Parents of special needs children are the only group of parents that actually hope their children go before them." It's heartbreaking and a truth I have intense difficulty admitting. I fear I could lose her and I fear she will outlive me. I think about our future together. Will I be seventy years old and still trying to care for my sweet Teale? I'm sure this post will bring judgement from others who could never imagine saying and sharing what I have. I also hope it brings peace to someone who finally does not feel alone in their pain. Pain, it can be physical or emotional, with me it is unseen by most, but everyday I struggle to let it go...