Thursday, July 28, 2011
As soon as I walked into the classroom, my heart sank. The kids desks were all together in rows in the middle of the room, but Teale's was off to the right alone. It was pushed against the wall on the right and both adults were blocking Teale on her left from the rest of the classroom. My eyes welled up, they had my daughter segregated from her peers. Did they really think this was ok? There were four adults in this room on a regular bases and Teale had many therapists who came in to work with her. How could something so blatantly wrong slip through the cracks with so many adults who were supposed to be looking out for my daughter? I waffled between exploding and crying, but forced myself to stay strong. As soon as her one on one aid and special education teacher were out of my way, I had Teale stand up and shoved her desk to the end of the row of desks. I was not quiet about it or very subtle, I was angry and let them know my daughter was not to be separated like she was an oddity. Even as I write this, my heartbeat picks up again, as it did that day. I didn't yell or even say much, my actions were my voice and they were strong! How long had my daughter been separated like this, what did the kids, who were supposed to be learning compassion and acceptance think of this? How could this have happened, were all the adults working with Teale really that dumb and thoughtless? This set the tone for me and Teale, I'm sure, felt my anger. I was hot and would be out for blood as soon as my volunteering was over. For now though, I was trying to hold it all together for Teale's sake. The tie dying of classroom team shirts was about to start, which seemed ironic to me, as the point was to build camaraderie among the classroom. The shirts would be worn on certain days as a symbol of unity. I was asked to go outside with the first group of kids and to my surprise, that did not include Teale. I knew this was a bad move on their part. My leaving would upset Teale, but I struggled with not wanting to ask for special treatment for my special daughter, so I went, hoping they would be able to keep her together. Soon after I was outside, someone came for me, Teale had fallen apart, thinking I had left her. I went in and tried to calm her, but it was too late, the damage had been done and getting her back was not happening. After much trying to calm her, jumping through hoops and many accusing stares from all around me, I knew it was a lost cause. I picked up my eighty pound daughter and walked down two flights of stairs out the front door of the school, her in a rage, as I passed the parents helping the kids tie dye. Not one parent turned, all avoiding eye contact, as I struggled with a child, much too large for me to carry and her raging at me. She was angry, but by then, even she didn't know why. I was just a target as she hit me, kicked, pulled out my hair and tried to bite. I somehow got out in front of the school and then talked her into going to the van with me, all the while being stared at by many people. The tears had not come yet, I knew they would, not hers, but mine. I somehow called Mark at his job, ironically he was an one on one aid for a boy who sometimes raged also. Mark was back in college at night, as we had decided our working in home daycare together was not working for Teale anymore. We had done in home day care for about fifteen years together, really enjoying it, but the chaos was too much for Teale. We were working on our next career moves. The teacher Mark worked with had been Teale's summer teacher, so he knew her well. Mark was right in our own school district, only minutes away from Teale's school. As soon as I heard his voice I broke and he was quickly excused to come help me. I got Teale to the car before Mark got to me, she was calming at the thought of going home with me and her Daddy coming, but I was a mess. My nice little volunteering in Teale's classroom had brought up many feelings. I had realized I didn't know enough about how she was being treated. I realized I couldn't trust those I thought I could. I realized Mark and I were truly the only two people who cared and understood our daughter and her needs. It was a turning point for me and after the tears, my anger surfaced! I was grieving much, grief for Teale comes in waves, this brought out a grief that was going to change me. I had discovered that Teale's hook for her backpack and coat was also isolated away from the other kids. The teachers had their reasons for all this, but I was not going to let them off the hook easily. I was going to talk to supervisors, the principal or whoever it took until I was heard. I would consult our social worker to help me take out some of the emotion I felt, so I would not appear as the blubbering Mom. I walked a fine line in advocation for Teale, somehow strong Mom's are just thought of as bitches and I worked hard to not get that word attached to my name. That night I needed a break from the pain I was feeling. Usually, I would vote to stay home with the kids as opposed to grocery shopping, but this night I needed some time alone. I was sad, no heartbroken and full of venom, walking our grocery store alone seemed like a good escape. No one would know the pain I was in and I would just pretend to be just like any other Mom, grocery shopping. As I hit the check out a woman approached me, good lord, I knew her face, what was her name? "Jill" she said, "I heard you had a rough day." This was the Mom I thought didn't care about me at the skating party. She could have easily walked by, but she didn't, she purposely stopped and showed care. It didn't take much, I blurted out the whole story, crying along the way and looking at this woman I never thought cared about me, as she cried just as hard as me. We stood outside in the parking lot as my ice cream melted and we bonded. Jill became one of my strongest supporters and closest friends, right there in that parking lot. To this day we often have "dates" at the same grocery store, sharing food and a drink together for hours, as we laugh and cry about our lives. Jill has been there for me in more ways than I could ever name. She was the gift God gave me on that dreadful day, a gift I am often not sure I deserve but am so thankful for!
I met her in kindergarten when her typical daughter was recommended by Teale's signing skills coach as one of the kids who seemed to care about Teale. We were inviting a handful of kids to Teale's Birthday party at a roller skating rink. We had asked Mary, Teale's one on one aid and signing skill coach for names of kids who she saw as good matches in the typical classroom. Our thoughts had been that Teale was an excellent ice skater (making her an even stronger roller skater) and showing her "typical" skills was good for the kids to see and for Teale to show. Teale wore a leg brace on her right leg as it was weakened by cerebral palsy, but she was a fighter who tried to keep up with typical kids in all physical ways. I won't deny that first meeting with Jill was odd. Jill is quiet and thoughtful, but in that situation she just appeared distant and not easy to approach. Her daughter has a severe peanut allergy, so she had to stay for the party, monitoring her daughter. You would think I would have learned to not judge a book by its cover, after all I was Mark's wife and Teale's Mom. The first time I met Mark, a very handsome, tall man, I thought he was full of himself, turns out he is just painfully shy. Teale, my daughter who has several disabilities, I am always fighting for people to see as just a person, not one with a disability. So, I'm embarrassed to admit at this first meeting with Jill, I judged her, thinking she really didn't get or care to get my life. I probably even thought she was one of those Pittsford Mom's, caught up in her own life of privilege. Years would pass before we would meet again and I would learn the truth. It was third grade, Teale's past years in a special education program at a typical elementary school had gone well, but the program ended after second grade. Inclusion was new in this school, Teale was pushed into typical classrooms as much as possible, but also had a home base special education classroom to learn skills not taught in typical classrooms. It was also a safety net, if she was having a tough time, the people in this classroom were trained to help her and provide outlets for her special needs. In third grade, there was not any special education program in place at her school, so we were forging our way through, making it up as went, so to speak. Mark and my feelings about staying at that elementary school were simple, Teale was comfortable and the kids had known her since kindergarten. Ripping her from the only elementary school she had known and having a whole new set of kids learn Teale seemed cruel. What happened in third grade though, turned out to be more cruel than changing schools might have been. It was challenging, the curriculum was far above Teale's abilities. She also lost the one person who had known her since preschool. Her dear signing skills coach, Mary, was moving to Japan, leaving Teale with a new signing skills coach, who didn't share the same passion for our daughter's needs. It was a rough transition, the special education teacher assigned to Teale was not a good match in personality or teaching skills. The typical teacher didn't seem to know how to incorporate my daughter into the class in useful ways. Teale was spending much of her day alone with adults and no peer interactions in a small room down the hall from her typical peers. The drive and passion to do what was right for my daughter seemed to just plummet in third grade. She became "the special kid" in the specials, mostly only seeing peers in their "special classes." She began to shut down that year, talking very little, participation in classroom activities dropped drastically. She was often given a "journal" to color in when the other kids did academics that were far above her abilities. Basically, third grade felt like all they did was babysit my daughter, giving her busy work to pass the hours. Teale was suddenly aware she was very different and she regressed. It was heartbreaking as she stopped showing her skills in classes she had previously done well in, like physical education. Teale's papers she brought home were boring and redundant, she was coloring much at school and working on the same activities. She was embarrassed of the completed work that came home in her backpack. Often crumpling them up if Mark or I tried to look at them or comment. My daughter was slowly shutting down and I had no control. I had often stayed out of the classroom, choosing not to volunteer because Teale was different with me there. Sometimes it just threw her and she would act out in a way the kids were not used to seeing her do. But for some reason, I signed up to help with tie dying shirts in third grade. This would prove to be one of the toughest things I ever experienced as Teale's Mom and a huge turning point in how I would advocate from then on. ....to be continued....
Wednesday, July 27, 2011
A blue envelope came home in her back pack, opening it, I didn't know what to expect. Then I read the inside and it hit me, a Birthday party invitation addressed to Teale. Tears immediately welled up in my eyes and I quickly texted Mark the exciting news. Every year we have a Birthday party for Teale, every year goes by without invitations being reciprocated. Sure, in the beginning, when the gap was smaller there were a few parties, but over the last four years, I can't think of any. Taking a chance on getting to know Teale by typical families was one of my biggest frustrations in the integrated setting. Families are scared of "different." Kids had little in common with Teale by third grade and yet our school district fought to keep her integrated. What we lost those years I can not get back for Teale. I can not regain that precious time that she should have been a child, enjoying friendships. She was isolated in the public school system, third grade was the beginning of the end. Teale had started school as a two year old, getting on a bus that fall we were filled with hope for her future. The preschool was for children with special needs but it also had typical children enrolled. Mark and I saw this as Teale's path at the time, as she was being raised with typical people and would need social skills to live in society with everyone. Preschool was our first decision on how Teale would be educated. Somewhere along that road in the preschool years, we had to make a turn. For eight months Teale would go to a preschool with only children who were diagnosed with special needs. It was a tough place, with many behaviors and no typical children. We would not chose to keep her in that setting long and would be offered a program right in our home district for kindergarten. Mark and I jumped at the chance to have Teale be in an included setting. The program seemed ideal for our daughter and for what Mark and I hoped for her. Teale would have a home base classroom with all special needs children but she would also be included into typical classrooms as much as she could be successful. Kindergarten had many glitches and many meetings to work through this groundbreaking program, but all in all, it was promising. I always saw Teale as a teacher, living her challenges with grace and providing insight into her world. Children in classrooms with Teale took an interest in sign language and learned about the deaf. They saw her frustration and anger and understood things were not always easy for Teale. Teale taught them that although one of her arms didn't work the way it should, she was amazing at adapting to this loss. She worked through surgery on her leg to make her gait better and on her arm, to make it hang in a more natural way. Teale taught much, just by being a part of the school. First grade and second grade also went fairly well. There were many glitches along the way, but Mark and I advocated strongly and for the most part thought the program was successful in those early years from kindergarten through second grade. Third grade was the year it all began to fall apart, as kids began to notice the opposite sex, play sports competitively and read to learn, as opposed to learning to read. Teale's interests were still very childlike, she was not maturing like the typical kids. That was the year the few invitations to parties became none. As Teale enters "seventh grade" an invitation comes home in her backpack. It would take me too long to explain how we got here, (see the blog, http://wearegodsentertainment.blogspot.com/2011/04/school-of-holy-childhood.html) but finally Teale is in a school we fought hard to get her into. Finally, I can see her future opening up again and the possibilities as endless. Finally my daughter has been invited to a Birthday party, such a simple thing in the typical world, but for Teale it is a milestone I won't soon forget.
Saturday, July 23, 2011
She was to be born on Monday, January 13th, 2003. My husband and I had chosen not to find out the sex of our babies, as we both felt it was one of God's greatest mysteries. I had had difficult deliveries with my other children. Beau had been blue at birth and needed to be rushed to the neonatal intensive care unit (NICU) where he was treated and observed for about a week. At that time, leaving my new baby boy at the hospital seemed unbelievable. He had had a very normal gestation, my pregnancy had been uneventful, I only knew he was a big baby. I was induced three days after his due date because he was big and my body wasn't moving him out. The surprise was when he was "sunny side up" and he was "stuck." Finally, when he was born with the help of vacuum extraction, his APGARS were very low, as I recall only about a five. Anything below a seven in very worrisome and an indication of possible long term damage. Beau is fifteen now and doing very well. My second birth was even more traumatic, Teale's APGARS were 0 at birth and 0 at one minute. At five minutes APGARS were a 2 or maybe it was a 3, my memory has let that one go. Anyway, you can read both Beau and Teale's birth stories in my past blog posts. The point is, with my third child, I was scared, no TERRIFIED to have things go badly. I had had one blue baby and one seriously brought back from dead. I was determined to give birth in a more typical way this time. My desires were very high to be handed my baby immediately after birth. After much discussion with my OBGYN and her discussing my case with others, it was decided I would have a scheduled c-section about two weeks before my due date. One of the beliefs was that while in labor, my placenta breaks down, it stops working and my umbilical cord stops providing oxygen to my baby. To avoid this, the decision was that I would not go into labor with this pregnancy. My cesarian date seemed ironic, given my other two births, but it was early enough without being two early and my doctor was available to do the surgery. Going into that weekend before Gwenn's birth was nerve wracking, I hardly slept at all worrying about it. The pregnancy had been good though, very similar to Beau's, except I was now considered high risk and many more tests and ultrasounds were performed. I had a very tough time gaining weight, an issue I had had in both my past pregnancies. This time my metabolism was at it's highest, burning everything I ate so quickly I was instructed by my doctors to consume 1000 calories above my normal intake in high caloric protein drinks. Considering, when I am not pregnant I struggle with weight gain, this was a strange phenomenon. Total weight gain had been 16 pounds when I checked into the hospital early Monday morning for my surgery. My fears were so over the top at this point, I concentrated on not crying much of the time. Beau was eight years old, he had been very involved in this pregnancy and was extremely excited to meet his new sibling. He had gone to school for the morning, wanting desperately to keep his perfect attendance record. He was in third grade and had never missed even one day of school. The teacher Beau had this year had looped with his entire class from second grade, making this the second year with her. In the one and a half school years with her, I had come into his class most weeks for about fifteen minutes to teach his classmates sign language. Beau's sister Teale, was born deaf, most likely a side effect of high antibiotics she was given to keep infection away. Her stomach had been open at birth and needed surgery to put her intestine and colon back into her. High doses of antibiotics were used on her so that she would not contact infections while healing. The other theory about her hearing loss was that an infection I had two weeks before Teale's birth may have caused it, as I was put on high antibiotics at that time. Either way, Teale was deaf in the high frequencies, mild to moderate hearing loss in the low frequencies, sign language helped her to understand and be understood, so our family learned ASL. While teaching ALS to Beau's classroom, they watched my belly grow and their interest in what I would have was very high. So Beau went to school to be with his classmates who cared about all of us. The plan was that my sister and my Mother in law would pick Beau up from school after the baby was born and then bring him up to the hospital to meet his new sibling. Mark and I had decided we wanted Beau to be the first person to know if we had had a boy or a girl, so no one would be told until after Beau was with us. At the hospital, the nurses started lines on me and told me the doctor was ready to take me into surgery. This was the moment I dreaded most. Mark would not be allowed into the surgery room with me until after my spinal was done, as we said goodbye I could no longer contain my tears. I broke down, gripping Mark and expressing my extreme fear of this birth going wrong also. He, also fearful, reassured me calmly and lovingly, as the nurses wheeled me from him and through the surgery doors. The anesthesiologist was ready as soon as I got into the room. My OBGYN was there waiting and so was one of the three NICU nurses we had had taking care of Teale for the two months she was in the NICU. I had contacted the NICU nurses and asked them to be in delivery with us, in case this baby's birth also had issues. This nurse had been available that day and would be given the baby after birth to do the APGAR rating. I needed this reassurance from someone I knew well and was hoping for my first APGAR over seven. We had planned well but still, until Mark walked into that room and I heard, for the first time a crying baby in delivery, I would be on edge. Mark came in as I was laid back down on the bed and the surgery was started soon after. I had had a thing about wanting Mark to tell me if the baby was a boy or a girl, so we reiterated this to the room. It is so common for people to know the sex of their babies, that I wanted to make sure they understood that we did not know. She was taken out of me and the room was silent, not a sound as they allowed Mark to cut her cord. Mark then told me, with much surprise, it was a girl. The pregnancy had been so similar to Beau's we had all thought it was a boy, but a girl, how perfect. I knew Teale needed a sister and I knew I needed a girl who was typically developing to enjoy my many "girlish" passions. When she didn't cry though, my heart stopped, not again, was all I could think. The NICU nurses reassured me though, she was fine and her APGAR was a seven. It wasn't perfect, as she was so quiet, but amazingly sweet, looking around at her new world with a wonder that she still possesses. After they made sure she was fine, she was placed on me. This was the first time I was to actually see and touch one of my babies in the delivery room. The joy and relief I felt was overwhelming, but a shadow of fear took over me as I looked at her face, she was blotched with red patches. No one was saying what the patches were but being that I was very entrenched in the special education world, my fear was that they were what is sometimes called port wine stain. This stain on a face can be a sign of deeper neurological issues. Mark was most likely unaware of this possibility, so he was blissfully happy to be holding our sweet baby girl, who was "even too sweet to cry," as he put it. I was unable to ask about the red blotches on her face at that time and tried to asses the situation and why no one was mentioning it. It took me until we were in a room alone to finally tell Mark my fears. He asked a nurse, who reassured us that her blotches were just stork bites, a harmless birthmark that would fade with time. Finally, I could relax and wait for Beau to meet his new sister. I knew he might be disappointed she was a girl, his hope had been for a brother. I though, thought God's plan had been amazingly perfect, a girl, a sister to look out for Teale someday and a friend for me. How I looked forward to pulling out all of Teale's beautiful pink clothes! Beau got to the hospital and the nurse caring for me was in the hallway as he arrived. She was to bring him to us so we could tell him the news, but instead she said "Have you met your new sister yet?" It ruined our plan, as my sister, mother in law and Beau all heard at the same time we had had a girl. Beau walked into the room slightly disappointed, but once he saw her, it was love. He held her and tried to understand her name, Gwenn Gabriela, he said over and over. Naming her PenGwenn right then and there, on her first Birthday he would give her a giant penguin. Teale would come meet her sister after her school program in the late afternoon. I needed to rest and Teale was always a ball of energy, so knowing she didn't totally understand all this, she would come later, after I rested. Gwenn had been born, with hardly a hitch, not exactly the ideal birth, but it still fulfilled a loss I had felt for years. I held my sweet baby girl and dreamed about her future in a way I had never done with my other two births. Today Gwenn is still a quiet soul, often choosing to not talk or answer questions when spoken to. She is much like me in many ways, loving animals, art, cooking and gardening. She is equally similar to her Dad with a shyness he posses. She has perfect pitch and in my opinion, sings like an angel, musical talent Mark's family has had for generations. Gwenn is a little sister, but as she matures above Teale, she also becomes a big sister, often looking out for Teale. It has not been an easy journey having three children. People questioned our decision much, but Mark, God and I knew what we were doing when we added Gwenn to our family!
Monday, July 18, 2011
How I love waking each morning, early, before the rest of the family stirs. I love the silence of the house to gather my thoughts. I love the smell of my coffee brewing and that first delightful sip hitting my lips. Mornings are my most favorite time of the day. It is the beginning, new and fresh. I love the way yesterday may have been dreadful but today has the promise of wonderful. Sometimes I choose to blog while the rest of the family sleeps. Other times I read about your lives on Facebook. In the Summer, sitting in my favorite rocking chair on my porch brings much peace. I sit near my flower gardens, observing how they are progressing and watch my bird feeders. The sounds of the mornings outside are quiet, birds chirping and my cats asking for attention. I sit with a peacefulness I find difficult to get to during the busy days. My coffee in hard, slowly wakes me, while I think about how blessed I am. My home was my parents growing up, they have both died but their presents is here, everyday I feel them, in many ways. As I look out into my yard I see my Mom gardening, I see the plants she put in so many years ago. I feel her with me and I hope she knows how much I miss her. Many mornings I "talk" to her, praying in my head, I share my thoughts with her. The yard was her joy, she loved getting dirty planting and weeding. I can see her knees covered in mud and her nails long and filthy from pulling weeds. I picture her making the plans for the plants she carefully put in throughout the yard and now I tend and add to her plan, always wondering if she likes what I do. There is barely a moment she is not on my mind in the gardens. The summer before she died, she and I walked the yard together, talking about the gardens. We got to a clematis vine that had never, in thirty years bloomed. Every year it came up and every year she and then I, were disappointed that it didn't bloom. The spring my Mom died I wandered the garden, seeing again the plants she and I had talked about. A friend of mine had told me the story of her own Mom's death and a yellow rose, her Mother's favorite flower, blooming in her garden where there had never been a yellow rose before. She took it as a sign from her Mom that she was ok, wherever she was. I told my friend, if my Mom is going to give me a sign, it will be the clematis, it will finally bloom because she and I talked about it and she knows I will understand. Well, that summer it did bloom, it wasn't magnificent, actually the flowers were kinda pitiful, but it bloomed. When I saw the flowers I knew it was a sign from my Mom because it was also her favorite color, purple. The clematis has bloomed every year since my Mom's death and it seems to be getting stronger as the flowers are more abundant. I feel my parents in my house and in my yard everyday, but it is the mornings when I feel them the most. Recently I took down an old bird feeder my Dad had made, it has sat on the top of a pole, unfilled for many, many years. There was fungus growing on the roof and it was in need of much repair. I started sanding it and discovered why it had held up all these years as the redwood began to look new again. My parents loved nature, they loved birds, animals, plants and they instilled that love in me. Taking down my Father's birdhouse, I had hoped to bring back a small part of him. It didn't take much to clean up the beautiful bird house. My Father had had great skills in wood working and it showed in this bird house I was appreciating for the first time. After sanding it, I added a protective varnish and the redwood shinned through like it was new again, a beautiful color. After reinstalling it, high onto it's pole, I filled it and waited to see if the birds found it. I was standing it the kitchen with Mark looking out the window when I saw the first bird in my Dad's feeder. It was a cardinal, my Dad and Mom's favorite bird. It was a sign from my Dad that he is ok, helping me to see the small miracles of life. I love the mornings, the thoughts floating through my head, filling me with wonder. I love how I feel my parents, grandparents, aunts and uncles who have all passed. They are still with me, here in this house I was once a child in and now raise my own children in. The memories flood my head often of my childhood and how blessed I was. The thing is, I didn't know that as a child, running free and enjoying life. Now as a Mother, I wonder what my kids feel about their childhood's and hope someday they wake early in the quiet of the morning, knowing they were always loved. The mornings are a gift from God and every morning I feel blessed and hopeful for what lies ahead.
Saturday, July 16, 2011
We were on our way home from soccer, it wasn't the first time an incident like this had happened. Teale is 12 years old, there have been countless times, but as she ages I feel like people "get it" better and the incidences are less. Strangers who don't know the whole truth, find her to be "different, too loud, obnoxious, rude or just weird." Sometimes they stare, making her and our family uncomfortable, sometimes we see the whispers or they may be more obvious with their judgement and words." Then there are the times we have been directly confronted by people who think they know more than we do, they think she is a bratty or an ill behaved child and needs to be put in her place. They judge Mark and I, treating us like it is "our fault" and they could do better than we are. There have been times such incidences have brought me to tears, a small part of me may have believed it. I was not confident in my abilities and would take to heart the meanness I encountered in the world. It hurt, every word, every stare, every whisper, every glance and every time a person would turn away, avoiding eye contact with me. It was like a piece of me broke, every time. We aren't a family who has kept our daughter with special needs isolated from the outside world. We haven't hidden from the possibility of hurt, we are out there, living life almost the same as any one else, but with much risk. Every time I leave the safety of my home, I am on my guard. I wonder what will happen, if Teale be ok or if strangers will judge and hurt me. Our son, Beau plays many sports, Mark and I both enjoy seeing him play, but it is often with fear we go to his games. Sporting events are a common place for stressful incidents, there are always so many "new people" who need educating on our life. I have handled this in many different ways over the years, talking to parents of other team mates openly about our daughter or even writing letters to the whole team. Usually we end up winning people over, we work hard at being Teale's parents and I think people can see our love and commitment. The opposing teams are tougher to "win over though." They only see a small snippet of our lives, maybe they get it, maybe not. A few days ago Teale was extremely loud and happy at a game. A boy on the opposing team made a sliding "tackle" at the soccer ball, winning it for his team. Teale found his "falling" hilarious, over and over again she would laugh, shout, clap and talk about him "falling." The boys on the opposing team didn't understand, they just found her obnoxious and were talking about her on the field. My son, Beau, heard there hurtful words, "She's obnoxious, someone should shut her up!" There was more I'm sure, but Beau sometimes protects my feelings. After all I have been hurt so many times. Beau has heard my stories and seen me cry when a stranger, a friend or even a family member has gotten the best of me. He knows that sometimes I am forward and brave, sharing a small part of Teale's story, hoping to educate, even just a little. Then there are the times, I crumble, too worn from the every day struggle to educate one more person. This time Beau was feeling brave, he heard the boys talking about his sister, thinking that she was making fun of them, they were insulting her. We were in the car on the way home from the game when he shared his story. Hearing them making fun of his sister he took a stand, right there on the soccer field he educated at least two boys, telling them a snippet of her complicated story. "That's my sister, she has brain damage and I would appreciate you not making fun of her." Their faces were blank, often there is disbelief with such statements. I often find people think of brain damage as physically challenged more than Teale presents. People are more polite to the family who has a child in a wheelchair than they are to my family. We were lucky and won the battle to teach her to walk, she was two years old before she took her first steps but there is much irony in this. There have been times in her life she has needed a wheel chair and during those times there is a different tone from the public toward Teale and us. They "excuse" her behavior and her uniqueness with more grace, the understanding is there and the judgement of us is less. It's ironic to me that we worked so hard to make her be the best she could and yet, if she had never learned to walk, the hurtful comments from the public may have been less. There are many people in wheelchairs with far more "normal" lives than Teale will ever have. Teale has broken her good leg twice and has had surgery once on her leg affected by cerebral palsy, all three times a wheel chair was necessary. Those weeks of Teale in a wheelchair taught me about a different prejudice attitude in this world. The empathy was more from the public with our daughter using a wheelchair, even though the life for us was in some ways easier. With Teale being immobile she is less likely to get into trouble, we were in more control of what she was able to do. Teale in a wheelchair is like taking the skinny girl and putting her in the "fat suit" you see a shift in the way the world treats you. Teale's brain damage affected her severely mentally, physically not nearly as much. To the trained eye, her gait is off, her right arm and hand hangs differently and is much smaller. She never uses her right arm appropriately and it moves awkwardly. To a stranger not looking for such things, they may miss what we see as obvious. As I said before, the incidences are less as she grows. It is more apparent to many that she talks louder than what is socially appropriate, that her voice has a quality to it that is unusual because of her profound hearing loss and that she walks with what looks like a limp. I am open to the public's questions about my daughter, I will share her story in a heartbeat when in the right "place." What hurts me more is the wondering what others may be thinking, especially when she is melting down in public. When you stare at me with what looks like judgement, not compassion, I hurt, wishing you would offer me a lifeline. My skin is thicker as I live this unpredictable life, but I a human and want acceptance. So, as Beau told the boys on the soccer field, we would appreciate you not making fun of Teale, not because she understands your cruel words, but because we do and we love her, unconditionally.
P.S. One of the boys on the soccer field later apologized to Beau. I was touched by his bravery as much as I was by my son's.
P.S. One of the boys on the soccer field later apologized to Beau. I was touched by his bravery as much as I was by my son's.
Tuesday, July 12, 2011
He walked toward the field. My girlfriend and I had signed up for a new coed softball league through our town recreation department. We had been placed on a team formed by a graduate of the other high school in our town. Dan was introducing us to the guys he had conjured up to play on the team. I was a full time Nanny at the time, loving my life, but certainly interested in meeting a decent man to spend my free time with. This is "BoBo" Dan said. "BoBo?" I thought, he was a tall, strawberry blond, in excellent shape and very attractive. Soon my bubble would be busted though, I found out he was dating a girl he had been dating about three years. I had noticed other guys on the team, attractive, nice, hopefully they weren't all taken. Meeting a guy in a bar wasn't appealing to me, so my high school friend and I had decided to try this idea. So far, I was thinking it was a good one, as Dan introduced us to one guy after another. The team wanted to bond, to build camaraderie, so what else do young adults do together? They go to the local bar after games, an ironic twist to my plan. It was fun though, hanging out with all these new people and hearing their stories, it was the spring of 1988 and I was not yet 21 years old. How I got into the bar, I don't remember, but I do remember enjoying my time with all of them. They had all graduated from high school in 1983 and most had graduated from college also. I had not gone the college route, loving kids I had gotten into childcare even before high school graduation. After Christmas break in my senior year of high school I had asked my school counsellor what I could do to graduate early. I had had it with high school and had taken so many electives I figured it was probably possible for me to graduate after January testing was done. He confirmed my suspicion, saying I just had to pass health, but they would allow psychology 101 at the local community college to count as health. Somehow I then landed a sweet job as a live in Nanny in one of my favorite parts of our city. Living with the family and caring for a sweet baby. I also had much freedom, it was a great time in my life. I only planned on being in that position until I left for college in August though. It turned out college wasn't my thing, as much as I wanted it to be. I just couldn't stop thinking about wanting to work with kids again and the independence I had had when working. Much to everyones disappointment I left SUNY Geneseo after just one semester to work as a Nanny again. My Uncle had been a professor at Geneseo and my oldest sister had graduated from there, so I'm sure I broke some hearts, but I was following mine. The three families I Nannied for after leaving college had treated me well, we were all very close and I enjoyed my job. I had a couple different apartments and different roommates during those years, living the typical young free life. The softball team became a major part of my social life, as we began to go out often outside softball games. BoBo was still intriguing to me, a super nice guy, he brought his Uncle onto the team. Obviously his Uncle had some sort of disability, but Mark (his real name, I had stopped calling him BoBo, following what Uncle Steve called him) never said a word about it. He just treated his Uncle with kindness and respect. Uncle Steve was just part of the team, hanging with us all often. I loved that Mark didn't make excuses for bringing him, there was no "My Mom makes me." offered, which to me made Mark even more attractive. At some point Mark said to me, "My Mom's name is Ellie." I replied "I wonder if she is the Big Ellie I was named after?" Turns out Mark's family and mine had been good friends many years ago through both our oldest sisters and through Girl Scouting. They had since lost track of each other, but there had been a decent bond. His Mom and my Mom were friends when I was born and my Mom liked the name Ellie, short for Eleanor. I am the youngest of five and my siblings vetoed Eleanor but agreed to Ellen, with Ellie as a nickname. In school I was mostly Ellen, as that is what the teachers would read and I never corrected them, but after high school I started using Ellie exclusively, just as my family and close friends did. One night Mark "cried on my shoulder that he and his girlfriend had broken up." I'm sure I tried to contain my joy and be supportive, but by this time I knew I could fall for this guy hard! Shortly after that, since he was obviously too shy to make a move, I asked him for dinner at my apartment with another couple. That was December 17th, 1988 and since then we have barely been apart. We were engaged on Valentines Day 1989 and married on August 12, 1989. Mark's kindness to his Uncle turned out to be one of the best qualities I could have found in a husband and a father because in December 1998 we were blessed with our second child Teale, severely brain damaged from a stroke at birth. Mark had been a fantastic father to our older son Beau, (named after Mark in a unique way) but with Teale, he truly shines. Since then we had a third child, Gwenn. Being a parent with Mark is my greatest joy and my toughest challenge, but I wouldn't want to do it with anyone else. I give much credit to Uncle Steve for bringing us together, he brought out the best in Mark and I noticed! Today is Mark's 46th Birthday, hard to believe we have known each other since he was a mere 22 years old. I feel BLESSED every day to have "found" Mark! Happy Birthday Honey!
Monday, July 11, 2011
The call came from my oldest sister, it was the night before Easter. My brother had found our Mom on the floor with what appeared to be symptoms of a stroke. She was ambulanced into the hospital and there was no real news yet. I headed to the hospital as soon as I could, knowing my kids would wake early for the Easter baskets I had yet to finish. Why do I leave things to the last minute, now I will need to stop at a store and put them together after the hospital. My life is often unpredictable, Teale often throws curves into the plans and I am often juggling to make things work out. There was the night at the hotel in Hershey years ago. We were in the hotel pool and it was the night before Easter. I had not gotten the kids Easter basket stuff then either, but this time was because we were traveling. Beau still believed in the Easter bunny so I needed to be careful about what he saw. Anyway, as I got out of the pool to go shop for the stuff to fill their baskets, Teale got out also. The plan was that I was going to go shopping alone while the kids were happy in the pool with Mark. Teale slipped as she walked on the pool deck, I'm not sure if she was just going to jump back in or was coming to see me as I was leaving? I must have turned away because next thing I knew she was on the ground, her head bleeding. Teale has cerebral palsy from a stroke at birth, her right arm practically useless, she couldn't break her fall and hit the pool deck hard. Next thing I know Mark and Teale are being ambulanced to the nearest hospital while I stay with Beau and Gwenn. Easter baskets still need filling and now I am unsure how I will get that done. There was a certain "deja vu" to the night my sister called with the news of my Mom. Hadn't I almost messed up Easter before? Hadn't I learned anything from that? But seriously, who predicts this stuff, my Mom had a stroke? It seemed just crazy as I drove to the hospital to find out more. I was sure she would be ok, she was only 74 years old, her Mom, my favorite grandparent had died at 92 years old. When I got there, an option was being presented to us, a new procedure for stroke victims that had not gotten medical treatment within a certain amount of time. My Mom fit this, my brother had been living with her, but as luck would have it, my Mom had tree guys at her house the day of the stroke. It was loud and my brother had been helping the guys. He wasn't sure where my Mom was, thinking they were missing each other amongst the noise and many levels of my Mom's lake front home. She had apparently been looking through the picture window, watching the guys work on her huge oak tree when the stroke took her over and she fell, behind the couch, only her feet sticking out. My brother started getting worried about where she was and searched, but between the chainsaw noise and the fact Mom had fallen behind the couch, it took him a while to find her. The hospital was a half hour away, so she lost time there also and so this "new" procedure was our best hope. Strangely it had been featured on ER the TV show just a week or so earlier. The "corkscrew" would be threaded through an artery in her leg up to her brain to break the clot and remove it. The MERCI Retrieval System was relatively new at the hospital my Mom was at, the doctors saw this as a long shot, but our only hope, so we agreed to their doing it. We then waited, excruciating was the wait, so when three "white coats" came for us I was relieved, until they started talking. The device went in fine, they broke and grabbed the clots, there had been three, but, why is there always that "but?" When they started the retraction part of the procedure the device broke and a part of it was still in her brain. It had been a long shot, they didn't see the piece in her brain as causing more harm, it just didn't give her the optimum situation to possibly have a full recovery. Only time would tell what would happen next. We were able to see her and I think she looked at me before I went home for the night. I stopped at an all night store to buy fillers for the kids baskets and went home to Mark asleep. We had talked on the phone as I left the hospital, me telling him I was going to stop at a store, as there was nothing more to do, but wait and see. After filling baskets and hiding them I caught a couple of hours sleep, waking to excited kids early would be tough. We somehow made it through the basket excitement and got us all to church, where I asked for prayers for my Mom. After brunch with my sister and her family several of us went to see Mom at the hospital. She was so fragile looking, the doctors had more information about her stroke by then and ironically it appeared her stroke was very similar to the one my daughter had had at birth. My daughter had much brain damage from her stroke and her recovery had been much better than expected, but in an adult the recovery would be much more difficult. By Tuesday my sister who lived out of town was here, by Wednesday we were meeting with doctors to discuss options for Mom. It was more and more apparent we were losing Mom and this was not the life she would want. I am the youngest of five, the "surprise child," five years younger than my next sibling. I have three sisters and one brother, so it also was a disappointment when I wasn't a boy. I would consider my life pretty stable compared to much about my siblings though, as in all families there is much "stuff!" We have had many tough times in our relationships with each other, but when it came to what was best for Mom, we all agreed wholeheartedly, she would want to be let go. So everything would be removed and she would be put in hospice. On Friday when I went to see her in hospice she looked the best she had all week, her color was good and she finally looked at peace. I had Teale with me, as I figured she would not be "bothered" by what she saw. I gave Teale my phone to occupy her while I talked to nurses, my sister and my niece. Months later I would discover a video Teale, only seven and severely challenged took of my Mom on what would be my Mom's second to last day of life. Saturday morning we all met to discuss Mom, her settling of affairs, even her obituary. She was just rooms away, still alive, but this was the best time to meet and there was much to discuss among five head strong siblings. Mark was shocked at how bad my Mom looked only a night after I had raved about how at peace she looked when I had visited with Teale. The end was near, we just didn't realize how near. The signs are universal, the hospice nurses explain things well, talking about all the physical signs that occur when death is near. Mark and I need a break from all the sadness and take the kids swimming at the YMCA after leaving the hospice, but when we get out of the pool we had missed many calls. All my siblings trying to reach me, as the nurses said the end was near. We quickly arranged care for our kids, Mark insisting on missing his first gig with a band he used to play with and was scheduled to play with that night. I was grateful for his insight, I thought I could "do this" alone and had told him to go to the gig and come to the hospice after. If he had he would not have been there when my Mom passed. We were just there a few hours when she took what seemed to be her last breath, but much to my sister and my surprise, she started breathing again. Within the next hour though, she really took her last breath, leaving behind five "kids" and seven grandchildren. As she left us, Mark who had lost his Dad at the very young age of two, said to my Mom "Say hi to my Dad for me." Every time I even think about that moment, tears fill my eyes. She was gone, one week to the hour of when I first went to see her at the hospital, she was gone. Easter will never be the same for me, she must have had a sixth sense about what was to come. She had brought over Easter Baskets for my kids to my house just two days before Easter. Why she did that, I did not understand at the time, as she was to be at my house for brunch on Easter Sunday. She never made it to brunch, she left this world the same way my daughter came into the world. A severe stroke took her from me, leaving me to ponder the irony of losing the person who supported my daughter Teale and our life with her the most.
P.S. Every year I put together Easter Baskets with the help of donations from friends and family to give to people who might not otherwise receive an Easter Basket. My Mom's last action to me, caries on her memory.
P.S. Every year I put together Easter Baskets with the help of donations from friends and family to give to people who might not otherwise receive an Easter Basket. My Mom's last action to me, caries on her memory.
Sunday, July 10, 2011
The NICU was a tough place to be. I knew I did not have the guts needed to be a medical professional, so being forced into this situation challenged me. I wanted to hold the babies no one came to see, the one who trembled from drug withdrawal I wanted to take home. The "pods" as they were called, were small, you were practically on top of each other as you tried to live this very strange and personal life with your baby. One day there were screens placed around a baby who was right across from me in our pod, her family was behind the screens with her. I knew I couldn't ask, but I knew what was happening. That baby's future was even more uncertain than my Teale, maybe she was in pain or wasn't going to make it on her own. The machines were turned off and the moan of the Mother I heard that day still haunts me. I sat there with Teale in my arms and wept for the family, but especially for the Mother. I prayed for them and selfishly, for me, I didn't know how I would survive such a loss. As the screens were removed and the family walked by, I avoided eye contact, too fearful I would break down into blubbering tears, something they did not need. Teale must have been about a month old when this incident happened, as by then I was holding her. I remember Mark wasn't there and I needed out of the NICU after the family left and the baby's space was suddenly clear. I put Teale back in her crib and went to the ladies room to cry and pull myself back together. I called Mark, I needed to hear his voice and then I went back to the sink I scrubbed at countless times so I could go hold Teale. It was so strange to me that everyone and everything around me just carried on, a Mom had just lost her baby. The other time I witnessed such a thing, it happened in my friend's pod. You may remember my HS friend had had a son with gastroschisis just weeks before I had Teale. Although we were in different pods, we hung together much and were able to touch base with each other often. The schedule Mark and I ran in the NICU barely varied during the weekdays. We had been able to get help for our in home daycare daily so that I could be at the hospital with Teale. Mark was running our daycare with the friends and family who stepped up to help us. Many of our daycare families pulled their kids, relying on their own families, to give us breaks also. I often got rides to and from the hospital, spending from morning until dinnertime with Teale. Dinner was spent at home with Mark and Beau. After dinner we would do something fun with Beau and then do his his bedtime routine together. Beau loved being read to, I was reading chapter books to him, he loved curling up on the couch to find out more about Narnia or to solve another Tree House mystery. After putting him to bed, someone would stay at our house while Beau slept. Then both Mark and I went back to the NICU to be with Teale until about midnight. Weekends varied more, we may have gone up separately or all gone, so Beau could see his sister. There were times people came to the NICU and then took Beau home with them. He had many play dates and really had to grow up fast during that time. He had been very attached to Mark and I, having been raised by both of us solely. Suddenly going from being with Mark and I constantly to being with many different people was somewhat good for Beau, as he became more confident with this independence. Although I worried he resented Teale, he never showed any signs of that, just care and concern for his baby sister. One night, after putting Beau to bed, Mark and I walked into the NICU past our friend's pod and could tell they were distraught. We stopped to talk in hushed tones, a baby in their pod was about to be let go. I am unable to really say how much these losses affected me, often those two families come into my thoughts. I wonder how they are today, if they have other children, if they ever "recovered." Other happier memories include New Years eve "partying" with our friends in the family lounge. They snuck in champagne and we toasted in paper cups the coming of 1999. Many other memories go through my head, good ones and bad ones as there were so many in the two months Teale spent there. It was a place of great miracles and huge losses. We were loved and cared for by many more people than I ever imagined cared about us. I learned about God's presence and I trusted Him to be with Teale when I was not there. Mark and I made music tapes that were left playing softly for Teale when we left at night, trusting she was comforted by them. One day I was sitting holding Teale and a doctor came to me. She callously told me "Teale has failed three hearing tests, we believe she is deaf." My heart sank, did she really just tell me my daughter is deaf the same way you would tell a person "she has a cold?" Mark is a musician, he would be devastated and now I had to tell him. I sat their in shock, not sure what my next move should be. I had just gotten to the NICU when this bomb was dropped on me. I had just settled with Teale in my arms, not an easy task with all the tubes and wires attached to her. I wanted to go to a phone and call Mark, but was that fair to him, to tell him over the phone? After sitting there for what felt like forever, I asked the nurse for help in putting Teale back and went to call Mark. I don't remember how I broke the news to him, I only knew it was one of the most difficult things I ever did. The nurses were positive with us, reassuring us that Teale seemed to respond to our music tapes. We held onto that hope until the more extensive hearing test would be administered after Teale's release from the NICU. It was one more devastating blow, but I was numb and becoming more and more hardened to what the medical community told me. I had God, faith, hope and much love, I would continue to believe miracles could happen. With Mark by my side, we would get through this and Teale would be the best she could, whatever that turned out to be.
Friday, July 8, 2011
Thursday, July 7, 2011
The next day was filled with learning things I wish I never had to learn. Teale would be seen by many professionals who would all evaluate her and analyze her birth. Mark and I would be asked many questions and often I felt like the blame was being placed on me. I experienced so many emotions as I got to know my new daughter but the one that stood out above the rest was uncertainty. We were repeatedly told, the brain in an infant can compensate for losses much better than in an adult. The MRI's were gruesome, brain damage had occurred as a result of a stroke. Her main cerebral artery at the top of her brain had burst. There was no blood flow to most of her left lobe and large chunks of her right lobe also. The doctors could not predict what this meant for her future, but it obviously didn't sound promising. One day I went to visit Teale in the NICU and she was attached to many new wires on her head. It was scary to see her like this, so small and fragile, one more test being done. An Electroencephalogram (EEG) test, to measure brain electrical activity was being administered. There was fear she was experiencing seizures. Being uneducated in much of this, all I knew was worry as a Mother. After this test was done, we would get the results, but I could watch the monitor and guess at what it meant. I would do that with all the monitors, watch the lights, the screens and listen as alarms went off to alert my NICU nurse team. To them this was just a job, the machines helped them do it more efficiently, to me it was a mystery I was trying to solve. What did this or that mean? Why did the one beep make them move quickly, while others seemed like there was no urgency? When the EEG was removed from Teale's head we were told there would be a meeting to discuss results. We had no idea that this would be the first of many meetings to discuss Teale that awaited us in the future. This meeting in particular would be the most life changing ever. They took us into a conference room where several professionals sat around a big round table. Introductions were made, there were neurologists, social workers, NICU administrators and doctors. I don't remember exact words, but we were told something to the effect of "Teale's EEG results show seizures, but more disturbing the EEG shows no differences between awake and asleep, experiences are not registering, in essence she has flat brain waves." I grasped Mark's hand harder and tried to compose myself. What did this mean? Were they saying her brain was dead? As we tried to process this, the social worker, who was all of 22 years old looked me in the eyes and asked "What are you feeling right now?" I wanted to scream "What the HELL do you think I'm feeling?" I wanted to reach across the table and strangle her! I waited for Mark to protect me, but Mark is much more thoughtful than I am and his response was not fast enough. I told her I wanted to be alone with my husband, that I wanted out of this room and all the people staring at me, waiting to see me break." Mark then spoke up and said the same thing with much more kindness and he asked to be alone with me. Before they gave us that request, getting up to leave the room, a doctor said to us "Any experiences you can give her, any stimulation she receives, will make a difference. Giving her as much as you can, can make her be much more than we see." They quietly left us alone. We cried and tried to figure out what this exactly meant. We would talk to our NICU nurses who we trusted. I'm not sure when we made this next decision, but I believe it was in this room while alone that we made one of the most thoughtful decisions ever. Mark and I decided to tell no one what we had just heard. We would not share the extent of her brain damage, yes, we would admit to some, but the extent would be kept between us. Our thoughts were the more people knew, the less they would expect from Teale. We wanted anyone working with her to think she had all the potential in the world. We were not going to settle for her not walking or talking, we were going to get her back, no mater what it took.
Tuesday, July 5, 2011
I believe my Mom went home shortly after we left Teale in the NICU with the nurses. It had been a rough night and I had had major surgery. Mark wanted to get me into my bed and he also hoped to get a few hours of sleep. We ran in home daycare together back then, ten children counted on us daily. Our "kids" would be showing up in the morning, unaware of what our night had been. Mark needed to get home before the families started coming to our house so he could explain. Beau had no idea he had a new baby sister, nor did much of our family or friends know the hell we had just been through. The night had been so strange and unbelievable, we had not bothered many with calls, as early in the evening we had been unsure what would happen. Then by the time she was born, it was late and what would we say? Mark had the difficult task of spreading the word of our daughter's birth. I was too physically spent to talk to many people and my thoughts were too full of fear. I imagined words of uncertainty coming from my lips. "We had a daughter, but she was completely unresponsive at birth and we don't know if she will make it. If she does pull through this, we don't know how severe her brain damage is or what she'll be capable of." Awful, unfathomable, the night still just felt like a dream or the worst nightmare ever. The morning came and Mark went home, his leaving me there alone was like he was leaving me with a pack of wolves. I felt betrayed by many, the resident in triage who had treated me so poorly, the medical community who had told me she would be ok, all the people who had told me stories of their friends or friend's friends who had had gastroschisis but were doing well in life. But mostly I felt betrayed by God, why did He allow this to happen? Mark and I did everything in our power to handle this pregnancy with grace. We prayed for our baby's safety often, we went to the numerous doctors, we attended counseling together to be prepared and build our relationship stronger in this time of stress. We went to church weekly and were involved deeply in our faith community. I believed, we were decent people, living our life honestly and caring about others. We loved each other more than most couples I knew, enjoying our covenant with God in a marriage of faith. We truly enjoying working side by side daily, caring for other people's children and raising our active son. This would become the time in my life I would struggle in my faith the most, the time I would be the most angry at God. In contrast it would also be the time I felt the most surrounded by God's love and the most connected to the universe as people showed us much love and care in our time of pain. In my pregnancy, I had trusted it was going to be ok. I had believed that God had given us this baby for a reason and we were doing everything possible to make sure she would be healthy. She would "just" need major surgery after birth. Basically after the recovery of her gastroschisis repair, she would be like any other baby and grow up to be like any other kid and then adult. I know Mark and I prayed as we fell asleep together the night of Teale's birth. I know hospital policy was that Mark could not be in bed with me, but the nurses turned the other cheek, knowing our baby may not make it. I needed Marks arms around me, much like a child scared from a nightmare, I needed him close. When Mark left, I do not remember. If we went to see Teale together before his going or if he went alone to the NICU is all trapped somewhere in my mind. Those details are lost to time or the heavy medicines I was on. Memories come in waves of those first hours and days, but one stands out above the rest. While I was alone in my room after Mark had gone home, the doctor who had been overseeing the resident came in. The resident had been horrid to me, treating me like a hypochondriac the night before. She acted like I was over exaggerating my labor and she had wanted to send me home. The realization that had she sent me home, I could have lost Teale and possibly Mark would have also lost me, had already occurred to the both of us. When the doctor came in, he asked if he could sit down, although I felt strong enough to talk, I would have preferred Mark was there. I was angry at the doctor, but more so, at the resident he was overseeing. The doctor offered an apology for what went on, for how triage was handled, for the results it all had on my daughter. He would never really know how his and the resident's bad judgement would impact my daughter and all of us in the long run. Somewhere out there, both of these doctors are living their lives freely, while Teale struggles everyday.
Saturday, July 2, 2011
The waiting was excruciating. I'm sure I was quite loopy as I over respond to anesthesia. This was my first surgery ever and the medicines really knocked me. I hated the feeling but struggled to get words out, thoughts were so foggy that I couldn't even verbalize that I thought I was over medicated. Mark thought I was just in shock, trying to deal with all the emotions we were both feeling. It would take my falling asleep in mid sentence while talking to our pediatrician a couple days after her birth for Mark to finally understand I was over medicated. I share this because the first two days of Teale's life were and still are somewhat blank to me. I know what I was told, I have some memories, but all in all, the drugs I was being given for pain also gave me amnesia. Whether this was the intentions of the hospital and doctors or not, I do not know. I have thought it may have been a purposeful move, as the grief over how the birth had gone may have taken over me and the fear I was going to go into a deep postpartum depression was high. As we waited for the news that the gastroschisis repair surgery was complete, I dosed in and out, dreaming about my baby. Mark and my Mom talked in the room and I quietly listened, too tired and distraught to have conversations. The nurses were in and out, checking on my vitals, when our surgeon came in. Mark remembers his words well, "You have some shitty timing." It was the middle of the night and he would rather have been sleeping. You may be appalled by his words, but bare in mind, he was the father of a close high school friend. He was trying to add some light to a very difficult night, after all he had also advised me while I was pregnant that "these babies do very well." His demeanor had always been gruff, no offense to him or other surgeons out there, but he had the classic "I'm God, cocky attitude." As a teen staying at his house, I had a certain "fear" of him, he was not a warm Dad, but the closeness we were to develop with his caring for my daughter would change all that. His words were precise, deliberate and blunt, a style I preferred and still do in doctors. I hate sugar coating, give it to me straight, so I know what I am dealing with and can move forward. The surgery had gone well, he was able to get everything into her and close her up. She had had all of her intestine and some of her colon out. He also made the look of a belly button for her, a strange concern I had expressed at some point to him. I had wondered what children would think of her seamless, belly buttonless tummy. Now that all seems silly, but at the time I had been thinking about my child fitting in. Teale was resting and would be kept intubated and in a medicine induced coma for at least 24 hours and then we would see how she was. He had also inserted a broviac line through her neck and out her chest so that she could receive medicines more easily. The outlook for the surgery promising, how she would do otherwise was very questionable. We would be playing the wait and see game for several days, as tests were performed and she gained strength. At this point we were allowed to go see her again, I believe I was allowed to get into a wheelchair instead of being taken in my bed. As we scrubbed at the sink, we would scrub at countless times, it all seemed so surreal. It wasn't even Christmas yet, I wasn't supposed to deliver until December 30th, yet she was here, waiting for us to come see her. She looked so vulnerable laying there, more tubes than before, bandages and machines beeping near her. It was like standing in a dream, it was real, but part of me just couldn't process all I was feeling. Touching my baby's tiny hand, tears rolled down my face.
Friday, July 1, 2011
Mark made phone calls, explaining that things had not gone well. At this point we know very little about our daughter and wait for doctors to come talk to us. I was "drugged" and for at least a day they kept me on something that put me into a fog. I have wondered if that was a purposeful move, to keep me sedated so my memories of mistakes made were too vague to bring forth. When Mark called my Mom, I told him to tell her not to come. Teale had been born at 11:16 PM, almost three hours after we had arrived at the hospital. For three hours she had been in distress, an emergency cesarian could have been done in minutes and she may have been fine. This is the biggest regret, why had they not chosen to get her out of me quickly? I didn't want my Mom driving 45 minutes at that hour on a snowy night. We knew nothing and had not even seen Teale yet. I was scared, needing more information and time with Mark to process what had just happened. Mark told my Mom what I asked, hanging up he turned to me and said "She is coming, she wants to." Little would I know how much that would mean to me for years to come. My Mom arrived and still we knew very little, but soon a nurse came to take us to see our baby. I was wheeled into the NICU laying flat on my back. The bed could barely make the turns to get to where my daughter was, Mark and my Mom close by. The babies were tiny all around me, infants struggling on tubes and wires and machines beeping. The lights were dim as we came up to Teale. She was attached to many tubes and wires herself and she was in the sterile bag, waiting to be taken to surgery. My emotions were numb as I looked at my very vulnerable baby daughter. The daughter I had always wanted to go with the son I always wanted at home, my family was perfect. I asked questions about her, learning they believe she had a stroke at birth. I'm not sure when they told us the "whole truth," a main artery on the top of her brain had burst, causing brain damage. Her brain damage would be severe, most of the entire left side would die off from lack of blood flow and there would be parts of the right lobe, straight down the middle that would also be affected. I looked at my perfect baby, a beautiful rose color now which brought much relief after seeing her grey only hours before. Her nose was adorable, her eyes were closed and she had these beautiful perfect rosebud lips. Her hands were in tight fists as she lay there, little would I know how hard we would work for years to come to get her hand to open and to work properly. I remember thinking she was beautiful, perfect like Beau had been, but with a tough surgery to come, I was protective of how "close" I got. Of course I was not allowed to hold Teale and I knew it could be days before I could. She was four pounds and six ounces, little, but not tiny. She was intubated for surgery and because she was on a medicine that put her into "a coma." They didn't want her moving and hurting herself accidentally with her intestine out of her body. She would be kept in this state a couple days, we knew this was the procedure for the gastroschisis repair. The bag was clear, but the warmth of her body made it tough to really see the intestine. My enduring shots for her lung growth had worked, we would find out later that her lungs were fully developed, a huge relief with many things that were wrong. We were only allowed a short visit as the doctor had been called to perform surgery and was on his way. I had seen our surgeon only hours before on the day I went into labor. We had had no clue at that time I was actually in labor. When the surgeon came rushing into the NICU and saw Mark and I, his shock was apparent and his words still burn in my head twelve and a half years later, simply "It's you?" He explained what was going to happen and that he would come see Mark and I after the surgery was completed. I was allowed to kiss my baby goodbye, trying not to think that this may be the last time I see her. I was then wheeled back to my room to wait for the news of how her surgery went.