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...

Changes & Blessings, part 7

I decided to just explain to my high school acquaintance that Teale didn't have one of the dolls she so coveted. That we just couldn't afford them and so a gift from American Girl Doll, although a very sweet gesture, just didn't make sense. She wasn't giving up that easily, Michelle said her daughter and her really wanted to do this. Michelle's daughter, Meaghan, had received many gift cards from her Birthday and with their living so close to NYC they often visited the AG store. They wanted to send Teale a doll! My heart jumped at the thought, all I could imagine was Teale's excitement when she opened that package. I was overwhelmed by the generosity, touched by the kindness and quit frankly confused on how to handle this. It just seemed so greedy, so wrong to accept such a large gift from someone I barely knew. At the same time, my heart was filled, I just couldn't believe the kindness in the world. I thought about how I could share this story, how from sharing it, it would touch more lives. The social media had brought us together, we had a second chance at friendship. Michelle was known to be a sweetheart in high school, but I really never had hung with her. She dated a boy for most of high school and I believe that had much baring on who she hung out with. I actually left high school shortly after Christmas break my senior year. I had fulfilled most of my credits to graduate and was just sick of the everyday routine. My guidance counsellor set me up with the local community college to fulfill my final credit and I took that class at night. As luck would have it I also landed a live in Nanny job for that semester, so suddenly my high school career was done. I would still walk at my high school ceremony, graduating with my class, but I never returned to classes at my high school. I was just ready to move on and the opportunity I ended up in as a Nanny are still some of my favorite memories of my lifetime. The family and I really hit it off and I loved living with them. But my decision to leave high school early meant I missed out on the most fun semester of a persons high school career. I have very little regrets, but every once in a while I wonder what I missed. I only bring this up because I may have missed opportunities to become close to people like Michelle had I stayed in high school that last semester. Her reaching out to me and my daughter was a second chance for both of us, something Facebook really deserves a lot of credit for in my life. I have made many connections, found out many people who have children with special needs or not have followed my family, learning along the way. People often reach out to me privately about their families struggles too. The networking of special needs families tends to be tight anyway in a community but because I am so open about our life here and on Facebook, I have connected with many. People often reach out to us in good and bad times, but Michelle's offer was unique. Not because of the dollar amount attached to it, but because of the sincerity it was given in. Michelle knew she could not solve all the struggles Teale and my family went through, but she wanted to give some joy to all of us. I graciously accepted her offer and the package arrived later that week. Many strange "God whispers" happened that week before the package came though. One time I caught Teale on the computer looking at The American Girls websight, she had up a picture of the exact doll Michelle had picked to send Teale. My heart jumped with excitement! Teale said to me once again "Maybe for my Birthday?" as she gazed longingly at the doll on the computer screen. Michelle and I had started texting each other regularly, so I sent her a picture of Teale looking at the doll on the computer. Her response was "It was meant to be." Another day I took the girls to our local library, a regular easy field trip with the two of them. There is a place where a display is set up and changed regularly for the kids. Often it is tied into the seasons of the year or book characters. As luck would have it, it had recently been changed to American Girl dolls! Teale stood staring at the display behind glass, my heart beating a bit faster as I imagined the package on it's way. Again I sent a picture to Michelle, again her response was "Meant to be." Michelle also texting me regulary, sends me updates on where the doll is in the process of shipping. It is an exciting week, as we await the surprise package. I decide to not tell my family to make the packages arrival even more exciting. One day Gwenn comes to me saying there is a big box on the front porch...

Changes & Blessings, part 6

I go to sleep worried, this is my normal, but when it comes to seizures, nights are the most worrisome. I say a prayer, asking God to protect Teale and to wake me quickly if she does have a seizure. With exhaustion setting in after several nights of worry, I pray I wake if Teale needs me. My fears of my sleeping through a seizure are huge. Mark is unlikely to wake, he has never in the past until I have and then alerted him. It's a lot of pressure to live with every night, but I am a faith filled person, so I often look at life as "God's will." He will wake me if Teale needs me. The morning comes and Teale seems much better, maybe "they" were right, it was too high a Lamictal level in her bloodstream. I start to feel more relaxed, we are back to "our normal." Hopeful once again that Teale is safe, that her body will stop fighting itself, my fears are dropping with the passing of time. She continues to cherish the new American Girl catalogs, saying to me, "That was so nice of Leah!" my friend's daughter who gave up the catalogues for Teale. Teale owns some dolls similar to the American Girl dolls, but the cost of them prevents us from buying the "real" thing. Raising a child with multiply disabilities has many hidden costs people would not know or understand from the outside.  We have changed our lifestyle many times for Teale. Giving up things often we thought we would do as a family. We have also done things differently for her sake and the sake of peace. We even changed careers at a pivotal time in our lives. We sent Mark back to college and I quit working altogether to be home for our complicated family. Life with a child who is mentally ill is often about keeping harmony. If something costs more, but for the sake of the family it is worth it, we will do it. These are not extravagant things I am talking about. We do not live on credit. But little things all add up. Our taking two cars to our son's soccer games, in case one of us has to leave with Teale, is a good small example. Teale's need to drive to calm also equals wasted gas. Like I said it's the little things that add up. Anyway, the catalogues to Teale are like a constant wish list. She goes through them asking in Teale language "Maybe for my Birthday?" We always say "Maybe?" Pretty much knowing unless we suddenly come into unfound money, maybe is really a very far off hope. So when I get contacted by an old high school acquaintance asking if she could send Teale a gift from the American Girl store, I am thrown as to how to handle it. She had seen my post on Facebook requesting a catalogue and happened to be visiting the store with her daughter. She said it felt like God talking to her to contact me. We were not close in high school, but she had followed much of my journey on Facebook and through this blog. Teale doesn't own a doll and although the clothes can be purchased for a modest cost, the dolls can not and they are what Teale yearns for. I hesitate as to how to say a gracious no thank you. At some point on this journey with Teale, I had learned when people want to help, you are giving them a gift as well as yourself a gift by accepting. There were times I was too independent, trying to stay too strong in my pain to let others in. Then there was this epiphany. I'm not sure how or when it happened, but I finally realized we were going to need a village to raise this child. I was not gaining anything by being stubborn and strong. I realized maybe this was God's gift in this life. He could not prevent her brain injury and the suffering we all experienced, but He could give us the gift of love along the way.

Welcome Back

Although it has been months & I need to finish my story, I woke today thinking about writing. This I have not given much thought to in months. So, I thought I would explain...

I love the Spring & Summer months out on my porch early in the morning. This Spring came especially early for my area. I was able to sit outside enjoying my morning coffee, watching the birds come to my feeders and soaking in the warmth of the sun. The peace I feel early in the morning is very spiritual for me. It is the solitude that I enjoy. My porch is one of my favorite places and a place that brings me much closeness to my God. Being able to get extra weeks out there was very special this year. The time renews my soul before the days work begins. My life of giving care to others is draining and my porch is where I refill my soul. So my blog stood silent, until today when I finally woke missing writing as much as I had missed my porch over the long Winter months...Welcome back to my crazy, loving, God filled life. I missed you.