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Monday, March 31, 2014

Weight Struggles

I think it started after my Dad died. I found comfort in food and it got out of control. A few months after his death I realized I had gained a bunch of weight, conscientiously I came to, realizing the true extent of the loss of my Dad. It hit me as an epiphany, I was eating my grief. I first talked to Mark, telling him my beliefs and that that I needed help dealing with this. Mark and I believe in counseling, we have sought it many times for different reasons over our twenty five years together. I do think this was the first time in our marriage that I needed help, by myself and just for me. My childhood had many good things about it, but there were also many issues I had stuffed deep inside me. Living with Mark, I often did not think about all those secrets of my past, my parent's divorce, mental illness of family members, much alcoholism and substance abuse. I had escaped many of the bad patterns of my past by marrying a man who was kind and gentle and did not have addiction issues or abuse me. My sister had married a man who was an alcoholic and beat her several times. I saw this in my late teens and swore I would find a good spouse, one who did not need fixing. I tend to be the nurturing type, a strong woman who thinks I can help or fix other people's problems. I know I often can't see my own faults, but other people's faults are very clear to me. I work on being better but this has not come without much introspective work in counseling and pain. I think we all tend to blame our pasts, our parents or circumstances for becoming what we are. That does not mean what we are is bad, I believe many of my best traits have been built from the tough stuff I lived. I am loyal, strong, an outside of the box thinker, a problem solver, a caretaker, just to name a few of my positive qualities. Many of those qualities would not have been built in an "easy, idyllic, pampered childhood." I was brought up in some painful stuff that only my closest friends really know. I am sure those tough times prepared me for the journey I have taken with our daughter Teale. I'm not sure everyone would have fought for her as hard as Mark and I have. I'm not sure everyone would have believed in her like we do. Sadly, it is my self image I have found the most challenging negative in my life. I struggle with my weight, my aging and my looks, often. Ironically, my husband seems to have rose colored glasses when it comes to these things about me. I swear the man still sees his twenty two year old bride. He is so complimentary of me, no matter what stage of life, by that I actually mean body shape, I am in. He supports and loves me, always and unconditionally! Recently it occurred to me, that I never look at Mark in the ways I so harshly judge myself. It sounds so basic, but until only recently, I thought Mark probably judges me inside his head. He may even be embarrassed by me in the stages where I am not fit but he is smart and too polite to say anything out loud. Then I put myself in his shoes, so to speak. Mark has had times in our marriage that he was very overweight but it just never mattered to me, he was still Mark, the man I love. So why would I think he thinks less of me when I am struggling? Maybe it is an old school thought that has never really left me? Maybe it is a society issue, women are supposed to stay young, fit and attractive for their spouses. In society, men are allowed to age, go bald, develop a gut, whatever and we still love them, admire them and call them things like distinguished. A woman aging, gaining weight, losing their looks is thought less of. This is where my disconnect lays, I know how Mark treats me, yet I actually believe in my head "he wishes I was better." My weight is my biggest demon. It started in my junior year in high school, when I was horribly sick with mono for over a month. I came out of that sickness thinner because I had slept so much and barely ate. I had no appetite and I went with that, eating very little. I got attention from friends and teachers who were worried about my weight. The attention pushed me to eat even less. Food became an enemy and has been ever since. I have done well at times and I have done very poorly. I eat out of hunger, but I also eat out of pain, stress, boredom and habit. I crave things that do nothing good for my body, but even knowing that, I still eat them. Stress is my biggest issue, but instead of doing something constructive for my stress, I eat. Usually I crave crap, a quick high is what I am looking for, sugar and caffeine to boost me for a short while. I found out when my Dad died that although I do not have any "bad addictions." My relationship with food is addictive in nature, I do not eat to live, I live to eat. So in conclusion, my thoughts are many, but basic. I do not judge those I love based on their looks and therefore, maybe, just maybe, I can stop the vicious cycle of judging myself, based on my weight. Weight is not what I am. I am the friend, the wife, the mother, the woman, who you can count on, always. 

Thursday, March 27, 2014

Just Because You Are Special Needs

We went to the only dentist in town that could deal with Teale's issues around denistry. They are connected to the local hospital, so the dentists can get into the operating rooms to do procedures if needed. Teale's behaviors were tough in the beginning when we saw the dentist. Often there was a team of people jumping through hoops to keep her cooperating. We would bring her signing skills coach to use sign language to help Teale, both Mark and I would go, we would bring a video and we would bribe her, whatever it took, we would do. When there were scheduled operations with orthopedists or her hand surgeon or other times when Teale was knocked out on anesthesia to get procedures done, I would coordinate all medical specialists to also get what they needed. There were many times a leg brace would be made, x-rays of her teeth would be taken, while a blood draw was being done for her medicine levels along with an EEG reading getting compleated. I'm a good multitasker, so this kind of coordination was easy for me. After all, it made Teale's life and our life easier to get much done at once. Teale has had hand surgery at least twice and a major leg surgery at least once, to fix the pulling her cerebral palsy was doing to her right foot. She has had ear tubes several times because of chronic ear infections and the hope it would help her hearing improve. Her tonsils and adenoids were removed because of chronic strep throat and sleep apnea. Teale has been sedated to do botox on her hand effected by CP. We have had her hospitalized for her bipolar mania in the children's psychiatric ward. Teale has had two long term (2 weeks each) EEG monitoring, to try and figure out her severe seizure disorder. Neither time was successful, but both were very difficult on our family, as either Mark or I had to be with her at all times. Teale used to wear a hand brace to loosen and stretch the muscles in her right hand. Right now her right arm is so much smaller than her left arm, it makes me wonder if another surgery will be needed? There is always much we could be doing. There are doctors to see, specialists to work with, therapies to try and cures to research. My mind is rarely quiet, I'm always thinking about how to improve Teale's life. So when we started dentistry, I knew there were many reasons to go where we did. There is a large population of special needs people who use this facility, so they are used to kids like mine. I built a strong relationship with a dentist there who saw Teale far more than the average patient so he could build trust with her. We worked together as a team and had many, many small successes. Teale is legally blind, she has no vision on the right sides of both eyes, this causes depth perception issues. While she was in Summer program with her school district at the time, the class spent half days with typical kids at a YMCA camp. Teale loved to swim the most, she was out of the pool and going to lay down on her towel next to a peer when she misjudged how far away the towel was. She slammed her permanent front tooth into the concrete, breaking 2/3rds of it off. Taking her immediately to the dentist that had worked with Teale, he was able to bond the tooth without sedatives. This huge accomplishment sparked many things in me. First of all, her overbite was so bad that her teeth were not in her lips being protected. Secondly, it proved to me that contrary to the beliefs of the orthodontist, who were tied to this dental facility, Teale may be able to handle getting orthodontic care to correct her overbite. I started pushing the thought with her dentist, taking it slowly and proposing just a night guard to start. My son's teeth had moved quite a bit with a night guard so I was hopeful we could get some results with Teale's teeth. After months of working through this, they agreed! Since she was scheduled for a procedure under anesthesia anyway, the orthodontics department and dentistry just piggybacked and did what they needed to with Teale under sedation. We were then in charge of the night guard, which was tough to do, but we did it. Months of work did not bring the results we had hoped for though. Teale had been decent about using the night guard, but often came to me in the middle of the night to remove it. Fighting her in my exhaustion, in the middle of the night just wasn't in me. She wasn't getting enough time in the night guard to make a difference and the months turned to years. The plus during this time was her cooperation at the orthodontist appointments. I no longer took a team of helpers and in general Teale did pretty well. I was hopeful she had proven herself and they would soon put braces on her teeth. A committee met to discuss Teale's case and we were called back for the outcome of that meeting. Fully expecting it to be positive, I went alone to the appointment. I must have been naive, because I was sure they were just going to tell us that they planned on starting the braces. Instead they told me the opposite, that they did not think she would be cooperative and therefore they were going to remove the night guard bands and send us on our way.  Teale's needs were too great and they felt if they removed her teeth to fix her bite and then could not get her cooperation, she would just have gaps of empty space and that would be worse. I BAWLED, literally, I was uncontrolable. Snot and tears going down my face, I was heartbroken and could not believe my ears. We had worked so hard, we had gotten Teale to such a comfortable place in the orthodontic and dentists chairs. She only needed me there to keep her on track, sure it wasn't perfect, but heck, every child has their moments. Teale sat in the chair with me sobbing, trying not to sob, trying to be eloquent in my pleas to just try! I was seriously feeling broken, I fight for so much for my daughter. I had to fight for the right school placement for years, I was worn, I was so sick of fighting. I remember saying to the team who told me they were not going to put braces on Teale ~ "I find it so sad that just because she is special needs, she doesn't get the chance to look the best she can." But then it hit me, fight Ellie, fight that she has already broken her tooth (2x actually, b/c the semi permanent tooth was replaced a second time when it broke) and it is unsafe to have her teeth not covered by her lips! I started taking the safety approach, I pushed and I cried and I stated facts, like her depth perception issues. All the while Teale sat in that chair, worried about me because I was crying. One of the sweetest things she has ever said was that day. I was still very emotional, trying to absorb the fact that my daughter would always have this horrible overbite. I had not hit the next stage of my grief where I would start to think logically and fight for Teale's rights. I was just overwhelmingly sad and Teale said to the team in the room as I sobbed ~ "She needs to go for a walk." There is some background to explain about that statement, that might help you understand how sweet it was... Teale had been upset in school the week before and I was called. She is not a crier, but she was crying, so not knowing what else to do, they offered to Teale to call me on the phone. I immediately went to her school and offered Teale to take a walk with me, so I could try to tweak out the reason she was so upset. Teale went back in her limited experiences in dealing with a crying person and what she remembered was my taking her for a walk. Her statement made me cry more, I was just so touched and so proud of her! It showed me that she was worth this fight, I wasn't going to give up! So I begged the team to take it back to committee and present the idea of doing something for my daughter. I suggested a minimal fix, don't remove any teeth, just get her bite the best you can without removing teeth. I suggested only putting braces on the top teeth, so we could at least fix her overbite. Months later I got the call, they had agreed to try! On October 22, 2013 Teale had braces put on her top teeth. She was PERFECT! Her cooperation has been exemplary at every visit. Just last week the orthodontist suggested the idea of taking her care to a higher level. We are now considering putting braces on her bottom teeth also. We may even consider removing the teeth that would make her bite even better? Whatever happens in the future, I just know I will never give up on Teale, she has proven people wrong time and time again and she is worth the fight! 

Tuesday, March 25, 2014

25 Years Later

On August 12, 2014, Mark and I will be celebrating 25 years of marriage. In many ways the years have flown. We live a busy life and the easiness of our relationship makes the days go by quickly. In many others ways, our life has been such a challenge and filled with much struggle. I look back amazed at what we have endured and what we have accomplished together. Right now we are in a good phase of life. There is nothing terribly tough going on, not that our life is ever easy, but over the years I have learned perspective. We are not in a medical crisis of any kind, those rock our world the most. For the most part, all of our family members are happy in where we are right now in life. There are always struggles, we have struggled much financially since Teale was born. At first it was her medical expenses. Then as she aged, we needed to shell out a lot of money to help with her care, so we could continue running our in home daycare together. At forty something, we had to make a career change because of Teale's needs. It became apparent that her mental illnesses were too much of a risk for Mark and I to continue working our in home daycare together. Teale was explosive and unpredictable, her behavior was effecting our ability to care for other children. We sent Mark back to college and started over. Those years of Mark back in college hit us hard financially. Mark worked part time for our local school district in special education, but the pay was pitiful. The benefits and flexibility were the only reasons Mark took the job. Our family would have health insurance during those years he was in college at night and Mark would be available to help with Teale's care after school and on school breaks. I cared for fewer kids, as regulations let me, and worked several odd jobs but our actual income took a nose dive that we are still trying to recover from. Not to mention how difficult those years were on Mark and I mentally. Both of us working jobs during the day meant we were working apart from each other for the first time in our marriage. Mark would be in college at night and also doing scads of homework in his accelerated program to finish the second two years of the associates degree that he came into our marriage with. I had the kids, Beau's busy sports schedule, Teale's behaviors and her involved therapy and medical schedule, plus our sweet toddler Gwennie to care for. Honestly, I often wonder how we got through those years. My Mom died during that time in our life also, causing me to feel a void in my life that was difficult to recover from. My Mom was proud of Mark for going back to college but she would never see him receive his diploma. Ironically, Mark's graduation ceremony was held on my Mom's first Birthday after she passed, it was difficult for me to not have her here with us to celebrate. Our financial life now is still a huge struggle because of the combinations of many unfortunate circumstances and our past. Mark works for a not for profit, enough said? Cost of living is just so much more difficult to keep up with, gas and food prices are always on the rise. Health insurance costs are impossible for an average family to pay and neither of our employees offer family benefits at a reasonable cost. Without a college degree, I'm not marketable, even though I have many life experiences that have taught me far more than any university could have. Also, the little work I do get, is not much because Teale needs me home after school and on school breaks. Employers do not want a parent who puts their children first. Teale can not be put in just any daycare situation. On top of that, sitters who would be willing to care for her, would actually be making more income than I would for working outside the home. So financially, we are stuck. Someday I hope our financial security will improve, but honestly, I can only see it getting better with winning the lottery! So, all that being said, I am a person who believes love is far more important than money. Our wealth defiantly far exceeds many when it comes to love. As I said, Mark and my relationship is easy. I know we work at taking care of each other and we try hard to not take the easiness of our marriage for granted. Our challenges have bonded us, they have made us stronger and have taught us that together, we are a good team. With our 25th Wedding Anniversary coming up, I have found myself reflecting on our life together. Would I marry Mark again, knowing what difficulties we would live together? Would he marry me, knowing the same? Did we get thrown together at such a young age because our life was meant to be spent together learning the important lessons we have learned? The questions haunt me at times. I contemplate our future and how will we get through the many years ahead of us, without the means we will need financially. I lean heavily on the premiss that it will all work out, mostly because I have to believe that. Having a secure marriage is a blessing, knowing I am loved and love my husband deeply far outweighs the losses we have endured. But as 25 years approaches, I can't help but reflect on our simple Wedding. We were young and our Mothers did not contribute financially. Neither of us believed in needing much grander, marriage was not about a big Wedding to Mark or I, it was the marriage and the love we shared that was important. I had said from the very beginning that I would like to have a renewal of our Wedding vows on our 25th Anniversary. I know I thought we would be in a better place financially by now and we might have a more grand renewal of vows than the picnic style Wedding reception we had as a young couple. I even thought we might take a second honeymoon, maybe a pampered vacation somewhere? Our original honeymoon, which was great fun, was a combination of camping and staying in Bed and Breakfast Inns across New England. We completely flew by the seat of our pants, going wherever our hearts desired and staying where the wind took us. There was no plan, just Mark and I on the open roads in my small Toyota Corolla stuffed with camping equipment and a week off of work. If we tried to repeat our trip, I don't think we could. Too many years have past and too much uncertainty of where we were. I realize the dreams of a more grand renewal and a pampered vacation are no longer on the table for our celebration this Summer. I've learned much about plans being derailed in our life together. We were married in the Catholic Church, because at the time, that was where my heart was. Mark had no preference in religion, as he was not actively involved in any church at the time. Shortly after our Wedding I offered to Mark that I would be willing to attend the church he was raised in, if he was willing to go with me? He accepted my offer and soon we became members of Mountain Rise United Church of Christ. For me the change was comfortable, as my dearest Grandmother had taken me to her UCC church much of my life. We soon joined the church officially and have been with them ever since. Mostly because of Teale, it has been difficult to attend church regularly over the past several years, but our hearts are still with MRUCC. For this reason, it would mean a great deal to me to have our renewal of vows with the church family that has supported Mark and I throughout our marriage. So the lessons I've learned are not about life working out perfectly, there has been much pain and loss in our 25 years together. We have grown in our love and we have remained hopeful and loyal to each other. I believe in us and that is the bottom line. So this Summer I would like to share our love once again with those who have supported us throughout this journey. August 12th, 2014, it may not be grand, but I guarantee, it will be special. 

Wednesday, March 19, 2014

My Son

There is so much I love about my son, Beau. He is a kind soul with a huge, compassionate heart. He cares deeply about his family, especially his sisters. The relationship between Teale and he has always been unique. The two of them are bonded in a way no other relationship in our family has. A big brother looking out for his little sister is sweet, but a big brother looking out for his sister with special needs is amazing. He has always been there for Teale, even in the stages of her pushing him away and treating him horrible, he always understood and let it go. He never took it personally, but had a it is what it is attitude. I think the two men in my life, Beau and Mark, are very similar. They take whatever abuse Teale dishes out, but easily forgive and forget. Beau has never let others say bad things about Teale or any other special needs person without sharing his perspective. He's stood up to teachers, to classmates, to strangers and to friends. Sometimes explaining Teale but sometimes just telling people their views are narrow and ignorant. I remember many talks with Beau when he was younger. They may have been around times I was hurt by a stranger making assumptions about Teale's poor behavior. People don't always understand her severe brain damage, because physically, to an untrained eye, you may not notice her losses. As a younger child, she had far more rages in public than she does now. We were constantly on our guard and knew the public was generally kind and compassionate but often it was the cruel people who spoke up. The kind words from people who took the time to praise my family, those words stick, but are much less often than the hurtful things that have been said to us. I can probably count on one hand the number of strangers who, when Teale was in a bad place in public, offered words of encouragement or care. But the number of times I have been scolded, judged, and cut down, those times are far greater. Beau has seen me cry over a cruel comment, he has lived the pain of an event we tried to do as a family going terribly wrong because Teale raged, It has often been tough to do things together, her unpredictability is too difficult to take a chance with. Beau has lived with Teale as a sibling, knowing life is not always easy. He has never made excuses for her strange behavior, but he has educated many about special needs. We used to talk about what he could say if ever in an uncomfortable position where someone was cruel about Teale. I used to coach him, tell him people don't "get her severe brain damage" but still those are the words I will use if backed against a wall. Beau is in college now, many people know nothing about what he has lived. He isn't one to share Teale's difficult journey easily. As he moves from being part of our home to his own life, many will not know or understand what he has lived. I believe Teale is and always will be a huge part of Beau. I believe he is kinder and more compassionate because of her. I believe he takes a unique perspective about life into the world and because of this he will do well.

Saturday, March 15, 2014

Letting Go...A lesson I learn over and over again.

I often think about the life Teale "should" have had. Her birth was a tragedy, an occurrence of unfortunate events and incompetent people. I often wonder where those people are today, the resident who didn't believe I was in labor as my precious baby was stressed and in miconium. Where is that doctor today? Does she know how much she changed my daughter's destiny? How much Teale's birth changed my family? I think about the baby I miscarried, how that loss gave me Teale because if "he" had lived, I would not have gotten pregnant with Teale. All these thoughts run through my head more often than I care to admit. I am somewhat stuck in that loss, a lot of the time. I know it's not healthy, I know I need to let it go, but the immensity of Teale's birth going wrong effects EVERY aspect of my life. If only I had advocated harder in that triage room, if only I had insisted on another doctor checking me, if only I had voiced my concern and insisted on an emergency cesarian to get her out faster. I often wonder why I was not stronger. I often blame myself. She should have been different, she should have been ok. Only recently has my thought process changed. I  have always tried to get to a peaceful place with Teale's birth. I remember telling Mark early on, that I couldn't think about the liability of it all. I just needed to move on and find peace. I needed to accept that maybe it was all meant to be in God's infinite wisdom? I have done this in many ways, but as I said, the demons of doubt creep in too. I recently had an epiphany though, what if the baby who I never got to know, knew Teale needed us more? For many, this may sound just too Pollyanna, but for me, it feels like a faith filled moment of understanding grace and letting go. Maybe that child knew we needed Teale and Teale needed us, maybe no matter what I had done in that triage room, the results would have been the same and Teale would have come to us, as she is. Maybe she is here to teach, not to learn and maybe I always knew this on a subconscience level, but my faith and understanding is growing, so it is all making sense to me in a deeper way now. Maybe that is the biggest lesson Teale has taught me, that God is in charge and knows what we need? I will always miss the person Teale was "supposed to be." But without her the way she is, I know my life would not be as enriched.... I know I wouldn't have many of you. 

Thursday, March 13, 2014

Snow Days

I'm on my second day with Teale home from school because of a blizzard. Gwenn is off too, but besides the fact that Gwenn's mere presence bugs the crude out of Teale, Gwenn is generally easy to have home. Sure, Gwenn is a preteen and not in the easiest stage of life, but Teale, Teale takes everything to a new level.  She's been very OCD over the last couple of days. She's just STUCK, replaying the same videos or small snippets of a video over and over again. It doesn't bring her peace either or it would be fine with me, as crazy as it makes me. Her replaying bores her and my suggesting something different brings out anger. I'm walking on eggshells, wanting to offer a different activity, but knowing it may just cause more problems. She would love to go out of the house, but yesterday I didn't want to be on the roads & today I'm feeling the same. Who know's, I may cave, but I just offered getting her bathed and dressed and she yelled "NO!" at me. It's like living with a ticking bomb, but it can go off multiply times in a day. Her anxiety is high with so much free time, she's not sure what to do with herself, but won't take suggestions or directions well either. I get snapped at all day long, never sure if my suggestion will be met with pleasure or anger? We could do crafts, cook, do her nails, play a game, play in the snow or watch a movie, whatever, the possibilities are endless! But instead I have PTSD from the unpredictability of her snapping at me and she has anxiety and OCD because she is stuck and has too much free time! Snow days seem like so much fun for many families, for me, I just hope to survive. 

Tuesday, March 11, 2014

Cats

I woke up with our three cats surrounding me in bed. It is not unusual for all three to sleep with my husband and I, but the feelings of needing to write about them is. I often wake with a blog going through my head, like the topic was put there by someone in my sleep. I felt my Mom this morning, she was a huge animal lover. She died in 2006 of a stroke, my siblings and I deciding to let her go because of the severity of the stroke, she would never come back to us. That is a whole other story, but the point is, I feel her presence, often. Mark and I bought the home I grew up in, well before my Mom died. She moved from this home to a house on one of the finger lakes. Her dream had been to live on the water. She lived there from 1997 to 2006, when she had the stroke in her home and never returned to it. Growing up we always had cats. My Mom let us bring home strays and she would either help find a home or they became part of our family. She was a sucker for any animal. I tell my kids stories of the baby raccoon we raised because it's Mom had been hit by a car. Or the three legged frog I saved from the freezing Winter because he was unable to hibernate. My siblings and I brought home injured birds, unwanted hamsters, dogs that were lost, we knew our Mom would help. We had a fish tank, filled with guppies or a variety of fish we won at carnivals. I owned rabbits, one of them mostly hung inside, using a litter box and sleeping next to our dog and our cats. My favorite animals were always the cats though. As a kid they provided comfort and friendship. They'd sit on my lap on a cold Winter's night or sleep next to me, when as a young child the darkness still brought fear. I loved our dogs, I would walk them and play with them, but I think I've just always been a cat person. When I was dating as a young adult, liking cats was one of my criteria for a possible life partner. I could not imagine my living my life without cats. It became a joke too, cat haters aren't my type, a guy too insecure to like a cat would not fit into my life. Mark loves cats, one of the sweetest stories he told me was about his family cat getting sick and his knowing it needed to just be put out of misery. It broke his heart to put his cat down, but it was the humane thing to do. When Mark and I got married we lived in an apartment that first year on a busy road. I hadn't meant to get a cat in the Fall after our Wedding, but we found ourselves at the local animal shelter one Saturday afternoon. There was a long haired orange tabby and a blonde tabby in one of the cages. They were kittens, litter mates and they had been born on our Wedding day, which to me seemed like a sign that they were meant to be ours. Their coloring seemed ironic too, for those of you who don't know, Mark is a strawberry blonde and I was a blonde in my youth. (my hair darkens as I age, thank goodness for hair dye) Anyway, Fred and Ethel, as we came to name them, seemed destined to be ours. I always preferred to have two cats to keep each other company and these two were perfect. The problem was the the local animal shelter, in an effort to stop producing more unwanted cats, didn't want us to adopt the both of them. They were too young to get fixed right away and basically they didn't trust us (or anyone) to get them fixed before a pregnancy happened. I'm not sure how it all conspired, but somehow Mark and I were determined to adopt both the brother and the sister. We pulled in a complete stranger to help us in the scheme. We adopted one of the cats and the stranger adopted the other for us. I think we lied saying the person was my sister and would keep one of the cats at her house until they were fixed? That was almost twenty five years ago, so the details are foggy. I do know though, it all worked out and there was never a pregnancy. Fred and Ethel were very sweet cats, living from 1989 until 2005 or so, they were loved much by Mark and I and all three of our children knew them too. Cats have always been part of our family, I know after we lost Fred and Ethel we went without for a short time, but it didn't last long. Soon we adopted Pooh and Tigger, brothers that a friend of ours found for us. Unfortunately, we lost Tigger one night, he just never came home. We searched and called for him for weeks, but we never found Tigger. Pooh seemed lonely without him, so eventually we adopted Cheddar Cheese. Cheddar and Pooh were very happy together, but one day it occurred to me that there was not a better Birthday gift for our Gwennie than a sweet baby kitten. She was turning ten, double digits for our youngest child, it seemed very significant somehow. Surprisingly, Mark agreed and I started the search for a new kitty for our family. I found one at the local shelter, the same one we had adopted Fred and Ethel from. I had actually left the building, disappointed there was not a kitten I wanted, but something told me to go back in and ask. When I described what we wanted, the employee told me they had just gotten a kitten in, so I met him. He was exactly what I hoped for! So I paid for him and asked that they keep him one more day so we could surprise Gwenn. It was fantastic, such a joyful thing to give our Gwennie a baby kitty. Gwenn named him Bubba Lee, which was ironic in many ways. Bubba had been the name we had used when I was pregnant with Beau. Not knowing if Beau was a boy or a girl, we would tell people our baby was going to be named Bubba Bradley. Then there was the fact that Bubba was born on my oldest sister's Birthday and her middle name is Lee. Gwenn didn't know any of those facts when she named him. Lee is a family middle name on my side, it started with Leon for both my Mom and my Grandmother, but then was changed to Lee for my sister and my niece. Gwenn picking that name just seemed too coincidental. I felt like my Mom had something to do with our getting this kitty. He was Gwenn's pride and joy, she just loved Bubba, spending much time with him, taking a zillion pictures of him, he fit in perfectly with our family. She told me many times how special her tenth Birthday had been, to get Bubba was such a huge surprise! She had not expected a kitten at all. All our cats have been both indoor outdoor cats. I know the risks of having a cat go outside, after all, Tigger went out one day and never returned. But somehow because of Mark and I being raised with our family cats living that way, it just seems more natural to the both of us. Having Teale as a daughter cinches it, she would never understand keeping the cats inside. So we've taught our cats slowly to get used to the outdoors. Bubba was a natural outside, I never knew a more adventurous happy cat once he was outside. He loved to hunt and chase bugs and just sit outside in the warmth of the sun. He loved being high up in a tree and Gwenn loved playing with him outside. She took a beautiful picture of him in a tree that we all cherish. We lost Bubba in mid August to a car accident. It was a devastating loss for all of us. He was just ten months old when I got a call from a neighbor that he saw a cat on the side of the road. My heart sank. I had been in my gardens all morning, Bubba had been by my side, but then I went in for a shower. The call came as I got out of the shower, soaking wet, I dressed, shaking with fear. I called Mark and he headed home from work before we were even sure it was our cat on the side of the road. He knew if it was our cat, I would need him. I woke Beau and we snuck out of the house together, I needed support from my eighteen year old son and I didn't want Gwenn to know what was going on. As we approached the cat, I was sure it was our Cheddar, Bubba is a lighter blonde and this cat looked pretty orange. It wasn't until I was close that I realized it was Bubba, covered in blood, he looked a darker color in the sunlight. Devastated, I scooped him up into my arms, he was still warm, but lifeless. I couldn't believe I had to tell my Gwennie her best friend was dead. I felt like I had done this to her, I gave her this sweet kitten who she fell for, HARD and then I ripped it away. It was one of the hardest losses I have experienced. My cats have lived ripe old lives, Bubba was just a baby. I still ache to hold Bubba, to see him play with Pooh and Cheddar, to see him curled up with Gwennie. Our hearts were so broken, Gwenn and I cried for days together. Mark tried to be strong, but he too broke down many times. Teale didn't understand completely and asked for Bubba to come back endless times. Beau ached for Gwenn and I who took the loss the hardest. After a couple weeks of devastating sadness in our family I started looking on line and at shelters for a new kitten. We weren't healing, I felt like a new kitten might help us all. It wasn't going to take away the pain, but maybe it would add some joy? I finally settled on a kitten and told Gwenn I had to go somewhere. Beau was in on the surprise and kept Teale home for me. I had found a kitten on Craigslist. The owners seemed to really care about the kitten getting a good home and we seemed to hit it off well. Gwenn may have been suspicious, but her face when the kitten was placed in her arms, told me it was absolutely the right thing to do. We still missed Bubba, but this new kitten fit in perfectly too. Gwenn named her new kitty Wasabi Bobby. He's a sweet boy with lots of character like Bubba had. I can't deny I'm not the same since the loss of Bubba. I worry when our cats go outside much more than I used to, but as Mark said "Bubba died doing what he loved. We never could have kept him inside, he was meant for the outdoors." I think Bubba prepared my kids, especially Teale for a greater loss. Death is a difficult concept for children, for Teale it is really abstract. In December when we lost Mark's Mom, I told Teale that Nana was with Bubba. I think Bubba's short life taught us all much about love and sadly about loss. Our cats bring us comfort and I see my kids, especially Gwenn being much like I was as a young girl, my cats were always there for me when I thought no one else understood. Being loved by an animal is like being close to God for me. There is no conversation, but there is much connection just through a mutual love, a feeling that is indescribable. I often think of my Mom with the cats I've lost in my lifetime. I know she is taking good care of them and visa versa. The thought of our Mom's together in Heaven with all our relatives and our animals is what gets me through the sad moments. This morning I woke with the cats on my mind and this story running through my head, I don't think it was a coincidence. Miss you Mom and please, give Bubba a hug from me... 

Sunday, March 9, 2014

Our Dreams are Similar

Many years ago I wrote a letter to the editor about my daughter Teale. I was worn, she was in a rough stage and my family was doing their best to get through the crisis. Her behavior was more explosive than usual and her sleep was off too. We were barely keeping our heads above water and desperately needed a break. Our being in public with her was a double edged sword, often getting her out of our house was helpful, but it was also very risky. We not only try to protect Teale from the cruelness we may encounter in public, but we also try to protect Beau, Gwenn and ourselves too. Then there are my personal feelings about not wanting friends, family and the public to have to deal with the Hell we deal with on a regular basis. There are many feelings I have when it comes to raising Teale in this world. I often want to protect her and protect my family from the cruel comments we have encountered when we are in the community with her. Staying home can be easier because no one else sees what we live. At home, no one sees the embarrassing moments, the huge rages, the rude behavior. I believe dealing with other people's feelings is probably my biggest challenge. At this point, I'm pretty confident in my role as Teale's Mom. My skin has gotten thicker with all we've lived. But that is NOT the only thing that has happened to me. I'm not just damaged from being Teale's Mom, I'm also improved. I believe I have learned to love deeper, I believe I have learned strength and resilience, among many other positive qualities. I know I laugh much and what might bring another person to their knees, just makes me stand taller. I believe I truly appreciate the little things more than I did before Teale. But the thing that stands out far above the rest, are the friends we have made along the way. We have had so many people put in our lives who we would not have had any reason to meet without Teale being in our family. I think about the teachers, therapists, doctors and families of other special needs people. Many of these people are such integrated parts of my heart now, I could never imagine life without them in it. I think we have taught much about special needs by our just living a normal life with Teale. By our not letting the risks of "what could go wrong" ruin our trying. Sure we have been burned many times.  There have been several events that we knew before we went, that we should not put ourselves in the situation. We've also been wrong, we've gone somewhere with confidence or with fear and she has surprised us in a good or a bad way. Unfortunately our generation is still getting used to the special needs population being a participating part of society. I believe it will get easier for families like ours eventually. I believe because we refuse to keep our special families in isolation, like past generations did, complete acceptance will someday happen. For the families who are challenging this change. For the people who accept, love and respect my daughter and all people, I too have a dream, much like a great man who knew segregation was wrong. 

Saturday, March 8, 2014

Miscarriage

 I often feel his presence. I know it is not something everyone believes, but I do. Yesterday I had a strong day of feeling him close. When I woke in the middle of the night I knew "he" was their. I always felt like it was a boy, the baby I miscarried in the late fall of 1997. A picture I found yesterday of Mark, Beau and I together stirred much emotion about him. The picture was taken on Thanksgiving at our house in 1997.  Mark and I had planed to announce our second pregnancy to the family on Thanksgiving Day, instead it was a day of sadness and pushing through the pain. I had miscarried just days earlier, changing my joy to sorrow in an instant. I had not even told people I was pregnant yet, so to then tell them I had miscarried. In the picture Mark and I have smiles on our faces, but it was the beginning of months of sadness for me. I remember Mark trying to pull me out of my grief, but nothing really helped. I couldn't shake the loss and with the winter being tough for me anyway, the loss just made it worse. Last night I woke and he was with me, I could feel him, it's not something I can describe well, but I knew it was him. I still miss him all these years later. I still wonder what our family would have been like with him in it. I still think about my son Beau, having a brother and what that would have been like for him. I still picture a face, I never saw. Miscarriage is an unspoken grief that we are forced to move on from. Many don't get the pain of it or that it never leaves you completely. I didn't bury a baby, so to many it is unreal, but for me, he is here, near me, waiting...I still miss him all these years later. 

Thursday, March 6, 2014

The Unknown Fears

Yesterday my 18 year old son, Beau asked me "How long is Teale expected to live?" He warned me before asking the question that it was a "deep question." I was not shocked though. Mark and I have had this discussion much. The fear of losing Teale has been part of my heart since long before she was born. I had miscarried before my pregnancy with Teale, so from the moment I found out I was pregnant again, fear and joy combined. We got the news of her condition in the second trimester of my pregnancy. Her stomach was open and she would need extensive surgery to close it after birth. The possibility of the pregnancy not making it to full term was presented to us. After her traumatic birth, where she didn't have a pulse for over seven minutes, fear crept in again. Then there was the surgery to get her through, infection was a huge concern. We didn't know how her system would respond to all the trauma. There was always the fear of losing her. Teale is strong and she fought for life and we brought her home after two months of recovery in the NICU. There was much to be thankful for, but the challenges were far from over. Diagnosis after diagnosis would be dumped on Teale, one by one over the course of many years. One of the scariest would be when her seizures started. As an eight month old infant, seizures would be confirmed.  We were on our tenth year Wedding Anniversary family trip to Cape Cod when we first saw the strange behavior. Teale's head would do a rhythmic movement over and over again and we knew a new challenge was starting. Soon after getting home from that trip we would get confirmation of Infantile Spasms and daily shots of ACTH would be ordered. Teale's seizures were practically constant and very disconcerting. Stopping them would be the first step, but the possibility of seizures always being part of her life was very high. We would win this round, the Infantile Spasms would be cured, not without many struggles, but cured. It would be Spring of 2003 that our fear would come back full force. A night we could have lost Teale had I not followed my gut and gotten out of bed to check on an unfamiliar noise. I had been cozy in bed with our new infant Gwenn, nursing her before going to sleep. Beau and Teale were both fast asleep, Mark next to me, reading in bed. We had new neighbors next door and their dogs, unfamiliar with the new home, were barking. In between the barking I heard something, but Mark couldn't hear it. I was being prodded to go check it out, even though I was so comfortable with Gwenn snuggled into me on one side, Mark on my other. The nagging finally got to me and I went to check on Teale. She was having a Grand Mal seizure, her first, so we had no emergency medications in the house to stop it. Screaming for Mark to come, Teale was a horrid shade of grey, vomit on her, she had aspirated it. Her bladder and bowels had given way, my baby girl was soaked in bodily fluids and the seizure was still very strong. We called 911 and Mark directed me to run to the neighbors house for support, we would both need to go to the hospital and someone would need to stay with Gwenn and Beau. The ambulance finally arrived and Teale continued to seize on the way to the hospital and as the doctors worked on her. We would call our paster, scared we would lose Teale that night. It was a night that changed me, fear of losing Teale has never left me since. She would make it through and miraculously we would bring her home alive and with no further brain damage. But Mark and I would never sleep as peacefully again. Her seizure had lasted over an hour and a half, the doctors would immediately diagnose her with Comprehensive Epilepsy and we would see a specialist. Brain surgery would be discussed, many medications would be tried. There would be many more scary nights with middle of the night seizures of great lengths. Teale's seizures are always nocturnal, there is something about her sleep cycle that turns her seizures on. Ambulances would rush us to the hospital several times over years before we would finally stabilize Teale on medications, stopping her seizures. Teale hasn't had a full Grand Mal in years now. You would think my fear would be gone, but it's there, it's always there. Mornings she sleeps in later than her usual, I think I missed a seizure in the night and I struggle to open her bedroom door. Nights she sleeps at her beloved special needs overnight camp, I worry I'll get a call that she didn't wake up in the morning. Nights she sleeps at respite, I hope that she is being carefully watched. Every night we put her to bed, I wonder if the seizures will come back? So when Beau asked me yesterday his very difficult question, I was honest. I just don't know, the fear never leaves me...

Tuesday, March 4, 2014

Worry

There are times in our lives that all we do is worry. We "keep our head down and plug through the crisis," as my friend recently said. But our minds spin and worry takes over. I've been in many crisis in my life. Not only with my daughter Teale, although those are the ones that have ripped my heart the most, but also with extended family and friends. I've seen siblings abuse drugs and alcohol, I've seen mental illness among family members, I've witnessed divorces and suicides, aging parents and young spouses of friends die. Life is not all peaches and cream, that I know well. I've walked next to friends and family in pain and I've tried to hold their hands and be their sounding boards. To me, this is an honor, to support a person you love through a crisis is what friendship is. I've been on the receiving end too, people I didn't even know understood and they carried my family through many times of great dispair. I've grown with these experiences, I've learned about love in a deeper way. I've learned about my God and how much I need that relationship, in the bad, but also in the good too. There are many worries in my life, they can engulf me, if I let them. Mark and I take life on as it hits us, a crisis may be a time to learn a new lesson or get stronger in our faith or bring someone new into our life who we need. I am somewhat idealistic. I believe in fate and that things happen for a reason. I believe we meet people and learn lessons we need to learn. I believe that Beau, Teale and Gwenn picked us because we needed them. Worry overcomes us all at times of crisis, but I work hard at letting it go and believing "it's all for a reason."

Sunday, March 2, 2014

Destiny or Choice?

Do you ever wonder what you could have been, had life not gotten in your way?
Do you ever wonder where you might have been, had life not taken you where you are?
Do you ever wonder with who you would have been, had life not thrown you the people you have?
Is it fate or is in luck that makes our lives become what they are?
Do we choose our path or is it chosen?
Do we make our life or do we just live and it happens?
Can you change your destiny?
Would you, if you could?


Saturday, March 1, 2014

Migraines

I've gotten them since the fourth grade. A year that struggle is all I remember. I had a teacher I feared, she was strict, a yeller who easily snapped and seemed to hate me. My family had fallen apart. My Mom hurt and I could see the pain and fear in her eyes as she began a new life, without my Father. My oldest sister graduated from college and on that same day my Dad got remarried to the woman he had left my Mom for.
Fourth grade was the year I look at in elementary school as the year I'd most like to forget. The migraines started and because my teacher seemed to dislike me, all I remember was her accusing me of faking my pain to try and get out of work. The pain was intense, the nausea would overcome me, I couldn't contain my tears and would often melt into a puddle. My Mom had suffered migraines, she knew it was real. She worried and tried to get me medical help. I missed much school and fell behind in the lessons, fearing the wrath of my teacher more. The stress of trying to catch up would just give me more migraines. It was a vicious cycle, I just couldn't win.
I often wish I could embrace that fourth grade me and tell her it was going to be ok. I wish I could tell her that one teacher's opinion, one person, should not be allowed to kill another person's spirit. I wish I could tell her that in the end, fourth grade was not that important. I mostly wish I could tell her she was a good person.
It was the year it all began, a lifetime ago, that still sticks out as a year I couldn't find peace or compassion in my fourth grade classroom. I struggled and I hurt, my life seemingly falling apart, but to this teacher I was just lazy. I was a problem she could fix with her strictness. I often wondered if she herself had not known love or compassion?  Was her unkindness because she had been treated the same? I remember the day I finally shared my sadness over my parents splitting, the finality of my Dad remarrying. I remember nothing but her icy stare and the accusations of me making excuses why I was so far behind in the work. She thought I was making excuses, but in truth I just needed understanding. I was a confused kid, who felt alone in her pain, who thought no one lived in my world of a family torn apart by divorce.
I wonder now if she knew how much she scared me, how deeply fearful of going to school I had become. The power she had over me still makes me pause. How did no one see that she was killing my spirit or did they? Did she just have others convinced I was just a bad egg and not a child struggling?
She changed me, all good and bad circumstances we live, change us. We take the lessons in and learn from them. We may not recognize those lessons at the time, we may stuff the understanding deep into our self conscious, but we change.
For me that year taught me more than I could possibly understand as a young, fourth grade girl. The way she made me feel, I would remember forever and I would treat children completely differently than she treated me. I would love and feel compassion because of her. I would look at children, knowing they were good. I would not jump to mistrust and doubt when a child's spirit was in my hands.
The migraines continue to this day and I still think of her when I get one. My heart still skips a little faster with with fear when I think of fourth grade.
I learned that the way we see people is only a small part of their depth. I learned there is always another side of the story. I learned to seek the truth and not jump to my own conclusions. I learned that children are good first and foremost and that they deserve our love, our understanding and our compassion.
I learned the saying "you will get more bees with honey than with vinegar" to be true, because in fifth grade I found a teacher who understood and that year my work greatly improved.