Follow by Email

Saturday, April 12, 2014

Acceptance

We didn't choose this path, Mark and I aren't saints who took on a special needs child because she was alone in an orphanage in a far off place in the world. I know families like that, several actually, and I admire their love immensely. Those parents purposely picked their children and opened their hearts and their homes, knowing there would be challenges beyond the normal ones we face in parenting. Mark and I are not one of those families. Truth is, if given the choice, I'm not sure I would be here, in this family. Some of you may be cringing at my honesty in that statement, but I am human and life with Teale has been tough! Teale happened to us by chance and here we are. We aren't perfect, we have made many mistakes, we have snapped in times of turmoil. We have even wondered if we can keep going? In times of Teale's extreme behavior/mood cycles doctors have presented the possibility of giving Teale up to a group home setting. There have been times I have wondered if they are right? Those thoughts hurt like nothing else I have experienced. Giving up care of your child is never part of your dream when you decide to have a baby in a loving marriage. No one thinks this can happen to them, no one plans to have a child who is so violent and dangerous to their other children and themselves, but it happens. It has been a long time since the days that the possibility of having to give up care of Teale pervaded my thoughts constantly. I only wonder occasionally now if we will be able to keep this up. She is bigger than me and I am often at risk when things don't go her way. She can snap and attack, I live life on my guard, always. She's much more stable these days though, the explosions are fewer and farther apart. We're not living in constant fear and exhaustion as we have in past cycles that seemed endless and hopeless. The days of her constant explosions have mostly passed and in many ways we aren't that much different from other families. But we are different, we will never be the typical family who worries about which college Teale will go to, who she will meet, if she will marry and move far away? Our future for Teale is filled with the hope of happiness and independence, but it is not the same dream I have for our other children. Without sounding callous, it is tough to say this, but my dreams are more simple when it comes to Teale. At this time, Mark and I would prefer she stay under our roof throughout much of her life. We have a plan of having her live here with us, in our care, but with support and possibly even a housemate for her. Plans change though and if Teale has taught me anything, it is to not count on anything. When Teale was born we knew our marriage and our family was suddenly completely different from most others we knew. It was a slow process into this life we have now. I remember the beginning of the journey and the thoughts and dreams I had. I remember thinking we could overcome what the doctors were telling us. I remember thinking they were wrong and with much work Teale would use her right arm, we would win and show them they were wrong. She doesn't use her right arm or hand, we never could get her brain to connect those "dots." We "won" other battles though and for those we celebrate what Teale has and is. It happens slowly though, the changes of acceptance. There was a time I never would have believed she would graduate from any high school but the same one I graduated from. I pictured her walking across that stage, cheers filling the room, because against all odds, Teale had done it. We live in the home I grew up in, Beau graduated from the same high school I did. Mark grew up in the same town, graduating from the other high school and living just miles from me as a kid. We are entrenched in this community. I believed in Teale's being accepted here, embraced and loved. When we first started the journey of public education, I was sure our district could teach Teale. I wanted her in our community, after all she was already such a huge part of it and loved by so many. Even as a five year old, heading into kindergarten, I was sure she was teachable, I was sure she would grow with her peers and walk across that graduation stage with them. I knew she was special, but I had not accepted lower expectations for her. That came with time for me, maybe it comes with time for every parent? Our dreams change and our journey becomes something we did not expect. I was naive in the beginning, I believed love and hard work could cure all the birth injuries Teale sustained. I believed Mark and my love was more powerful than anything the doctors diagnosed. I did not choose this journey. I probably would not have. The pain is great and the loss of dreams of a normalcy for my daughter has been at times more than my heart could bare. She won't ever walk across the stage at the high school I graduated from. The kids who knew her back in her elementary days at public school may not even think about her anymore. They may not remember the lessons she taught them by just living her very challenging life. The dreams for Teale are not less, they are just different than they are for Beau and Gwenn. My heart hasn't hardened with this challenge, my heart has grown and accepted the life we live. I no longer think I can change Teale's destiny completely, but I do know Teale has changed mine. 

Monday, April 7, 2014

Six Weeks & Counting

I've never been good at consistent exercise. I have gone in short and long spurts of getting regular exercise, but never stay with it forever. Taking regular time for me has always been a problem in my life. Sure, I get out with girlfriends and I take time with Mark or doing something I enjoy, like blogging or gardening, but exercise seems to be a tough one for me to stick with. At 46 years old I am back to a daily plan. The week of February break with Teale home was rough. She was in a bad cycle, back to raging often, basically daily. My way of dealing with the stress of that time was not good, I know I ate a lot of sugar foods. I was looking for that quick high, that happy boost after you ingest sugar. I knew what I was doing, but I was totally not in a good place to stop it. Instead of detoxing from sugar the day the kids went back to school I decided to up my activity level. I had gotten a Fitbit from a friend who got it at a huge discount. The first month or so, I just wore it, tracking my normal activity. What I found wasn't good, without my mother in law living here, I was getting far less activity or steps in per day. I had realized my steps went down drastically when she moved out in June because I no longer had to go downstairs nearly as often. When my MIL lived with us, I was running down to check on her or take her food, etc. several times a day. The set up of our house is different from most. Our bedrooms and main living space, including the main kitchen, are on the upstairs level. The downstairs has a similar set up and that was where my MIL was living. But without a reason to go downstairs, like doing laundry or getting something out of the second kitchen, I barely ever leave this level. Staying on one level had drastically cut my activity. When my MIL lived here I bet I was up and down the stairs at least 40 or 50 times a day. I truly wish I had had a Fitbit then! Anyway, in my head, I made a commitment to myself to start getting in 15000 steps a day on February 24, 2014. Today marks 6 weeks of that commitment. It hasn't been perfect, I've missed the goal somedays, but overall I have stuck to it and done well. My success has been a team effort with my husband, who has supported me in many ways. His acceptance of my not getting stuff done around the house has been a big factor. Taking the time for me and ignoring some of the less pressing things in our life has been a learning process. Walking away from unfinished chores to get on the treadmill, knowing if I don't, it will be tough to meet my goal by the end of the day has been a challenge. I've learned how much time it takes for me to get in the 15000 steps and I try to get in a third to a half early in the day. I've even started exceeding the 15000, getting in 18000 or more fairly regularly. The changes to my body are many and they are few. I feel mentally better, I believe my body is tightening, I'm building muscle and my stamina is much better. BUT I haven't seen a big drop in weight, so that has been frustrating. The goal I set did not include changing my eating habits because honestly, I knew that would follow. I knew seeing the effort I was putting in to get in the 15000 steps would make me want to make healthier choices. I'm an excellent "dieter" once I set my mind to it, I lose weight, but I end up gaining it back, I'm a classic yoyo dieter. This time, I have changed my eating habits, but not drastically. I decided I would exercise and just go with how I was feeling, changing things slowly because I am putting in much effort to my exercise. I know the food changes are more "important" to losing weight and my goals are both improving my fitness and weight loss. I guess I had to realize that upping my activity would not give me the drastic changes I was hoping they would. Now I have to accept responsibility and also make much better food choices. I am sure in another six weeks I will see the results I hope for, so long as I stick to the plan. 

Sunday, April 6, 2014

The Hug

I took a chance and leaned in to hug her goodbye. She was sitting on my bed, waiting for her Daddy to finish helping her get dressed so she could enjoy her favorite Saturday activity. Every Saturday Mark and Teale go grocery shopping. It's their thing and they both love the time together. Teale has gotten so obsessive about it, she seems to be waking many times on Friday night and earlier and earlier in the morning to go with her Daddy-O! Teale likes routine, she likes consistency and when she is running the show. The grocery shopping didn't used to be such an obsession, but it's been a long winter in Upstate Western New York and I believe Teale has clung to this activity with her Dad more so because of the brutal winter. As she sat on my bed, I know I debated hugging her much before I leaned in. It's funny how I over think almost every move I take when it comes to Teale. Even a simple hug goodbye causes me much angst. Should I or will I just set her off? Is it worth the chance? She had shown signs of agitation all morning, the last thing I want to do is push her over the edge and leave her for Mark to deal with. But, I'm her Mom, I yearn to hug her, to show her my love, so I risk it and hold her, kissing her on the forehead and expecting to be pushed away, as is the usual. Surprisingly, she leans into me, lets me hug her and then says in her innocent, concerned voice, "You come back?" I pull away, feeling like I just accomplished something remarkable. Teale had not pushed me away and the release of love between us relaxed my body much. I look at my 15 year old daughter who has only let me hug her like that a few times that I can remember. How have the years gone by so quickly, I think, it's a common thought of parents, but a sincere one. Teale has been sensory defensive her whole life. She doesn't accept warm touches from anyone well. She pushes us away when we try to comfort her, but we've learned ways to get past it. We squash hug her, Mark and I will press her between us tightly, holding her, somewhat trapped in our embrace. Those bear hugs she seems to get relief from, but still it is not often we can get them in. I've seen a change over the years she's been at private school though. The school she is at now is a very "huggy" school. Many of the special needs kids there are sensory seekers, wanting physical touch more than most. Their filters don't sort out the "appropriate" times to hug someone and at this school, touching in an encouraging, loving way is common. In public school it is discouraged, but not at Holy Childhhod. I always felt this sort of environment was the answer for Teale. When she was very young I yearned for a way to break her sensory defensiveness with pushing the limits often. I was sure if I could get her on a therapy program where she was hugged and touched in a loving way often, she would eventually be broken of the defensiveness. I believe in a natural way, that has happened at Holy Childhood. The love of a private school, one that is not constricted by the societal issues around physical encouragement, has given Mark and I a child who we can occasionally catch off guard and hug. That gift may be one of the most priceless ones our family has received. So as I pulled away from our embrace, I felt thankful for a moment I won't soon forget and I answered her worrisome question, "Yes Teale, I'll come back, I always do...."

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 removed 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 this 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.