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 presence. 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.

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.

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.

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...

Changes & Blessings, part 8

I scooped up the box from the front porch & put it in an inconspicuous place in our garage. We would wait until a good moment to open it. A moment with the family all nearby, a moment when Teale was in a good place to accept the gift in all the love it was meant. It would be a couple evenings later before the evening was free of clutter. I called everyone together, explaining to Beau and Gwenn they will want to see Teale's reaction to this gift. I gave them a little background information and then we helped Teale to open the giant box. As she dove into the pink packing peanuts I video taped her reaction. My new iPhone in hand, I taped as she giggled her way through the packaging peanuts. I knew I wanted to capture the moments not only for myself, but mostly for Michelle and Meaghan. I planned on posting it to my Facebook page to share the story, to share the love, to show the generosity of Michelle and her family. I knew Michelle was not looking for praise from others in her generosity, I knew it was sincere and could be kept silent. But my heart told me by sharing we would touch others, by sharing the whole amazing story, someone, somewhere would also "pass it forward" and change a persons life in some way. The opening of the doll was entertaining and also touching. There were moments of joy and moments of confusion. The tape captures some of Teale's struggles and much of her humor and joy too.  When you see her OCD behavior shine through because the packaging peanuts are all over and the mess is too much for her. Her laughter as her Dad doesn't understand how to remove the hairnet from the doll. At one point Teale asks if my friend died, in such a joyous moment it is such a strange question. I have often wondered about that question, was it just because like she couldn't grasp why someone did this for her? I believe she has a depth of spirituality we do not understand and although the question is shocking to us, my bet is that there is a deeper meaning to it that we don't understand. Maybe Teale sees angels who help her and bring her joy and she thinks the angels brought the doll? Anyway, the video says far more than my words could ever say. My favorite moment was when she leans back in complete disbelief and joy as she discovers the doll. Teale shows happiness like no one else I have ever known. The doll has bonded us with a family who I am proud to know. It taught us and many others that giving is indeed far better than receiving....Now, go pay it forward...

P.S. The video would not upload at this time. I will work on it and hope to share it soon...