Perfect Normalcy

The morning started with Teale "on fire." From the get go, she was racing with thoughts of things she wanted. Intense and edgy, Mark and my answers to her constant inquiries had to be carefully thought out. When we answer "wrong" her intensity increases. We were not hardly awake and Teale was already wanting to go, go, go. She has been on a grocery store kick, wanting to go to the store constantly, two or three trips a day is not uncommon. While there she has been mostly fine, no really angry outbursts or issues. The thing is I hate grocery shopping, actually I hate shopping in general. Another thing is the amount of money spent going that much. The last and most frustrating thing is that is causes much disjointedness in our family. One of us always running around with Teale and the other one with our other two children and or all the housework to do. We are a family of five and we took on the care of Mark's Mom in October, so there is always much to do at home. This morning was supposed to be our break from that disjointed feeling. About a month ago I hired a babysitter for Teale for every Sunday so I could start attending church again with Mark, his Mom, Beau & Gwenn. This morning I just wanted to get ready for church and leave Teale happily with her sitter, so I could steal a couple hours of peace and regroup. Teale had other plans, she wanted to get dressed and go to a store. I set my foot down that she needed a bath or shower and that is when "Intermittent Explosive Disorder" took over my morning. She started raging that she didn't want to bathe, she didn't want the sitter, she didn't want us to go to church, she wanted to go to church with us and on and on it went. We were both hit, kicked, things were thrown and the screaming, wow, the screaming was so loud. She was bitting herself and in general being very nasty to both of us. Then the worst thing that could happen did, she threw her beloved cell phone a friend had given her and it split into two pieces. That was the "cherry on top" as the saying goes. The raging took on a whole new intensity as both Mark and I alternated who was trying to get dressed for church. In the mist of all this, we still hoped to go to church. I have laughed at the many mornings that have gone like this and then the rage stops somehow, almost miraculously and we get to wherever it is we are trying to go and look perfectly normal. I finally caved and went to the many medicines we own to help Teale. After a quick assessment and very brief discussion with Mark, we decided on valium and not our usual one, but two. I considered one for myself too, at this point I'm fried. I'm fried trying to get a couple hours of peace, ironic, hu? We get the medicine in her, another strange Tealism, even in a rage she will usually take the pills from me and swallow them. It begins to calm her after awhile and she finally agrees to the bath that started it all. Mark has left with his Mom and Gwenn, just in case I can not leave Teale with the sitter. Teale gets cleaned up and dressed nicely. I finish getting ready and soon we are on our way to church together. The sitter, Jeannine comes with us and we walk into church looking like all is well. Only Mark and I really know the hell of the morning we just endured. It's funny how we can move on from something so violent and awful as our daughter in a full rage, to sitting in church. I grabbed a couple hours of peace, kinda, my mind raced and I wasn't altogether there. I thought a lot about why God would give such horrid diseases to my daughter and about her pain. As I sat next to her, I looked at her smile and thought, wow, we look like the picture of perfect normalcy. The thing is I bet we aren't the only ones hiding behind a fake smile. 

Yo Yo Dieter Extraordinaire!

Weight, it is a huge issue for me. I go up most winters and then usually, with luck I go down most springs. The problem is, I'm getting older and the weight doesn't fall off like it once did when I finally hit that "OM, I'm HUGE!" stage. It takes hard work and patience. This doesn't seem to work for me. I don't exercise regularly and I'm patient with everyone else, just not with me. I love sweets and quite frankly, I hate watching what I'm eating constantly. So, I go up and then when I get fed up I go down. I've been doing it for years and years, actually, my whole life. In junior high I was quite thin as I recall, but I was not happy with my "big boned, German bod" as my husband calls it. I wanted one of those model skinny bods. I would diet, following whatever the latest fad was from Fonda to Oprah. I liked sweets back then too, so I started cutting calories by eating only the junk I wanted to and cutting out healthy calories. Then I got sick as an eleventh grader in high school, really sick. Mono knocked me down for a month, all I did was sleep and I never ate. By the time I finally came out of it, I was thinner and not at all hungry. I loved the attention I got when I went back to school, even though most of it was worry because I was so gaunt. I think that is what started a vicious cycle of poor dieting skills. I would eat whatever for awhile, realize I had gained weight and then go on a crash diet. Thus the yoyo dieter in me was born. This winter I hit an all time high! I was TOTALLY out of control, eating sweets of all kinds and huge portions of favorite meals. I knew it was my fault, but I just couldn't seem to stop, I was stressed and food was the fix. Finally, it hit me and I knew I needed to stop. I hated my body. I hated getting dressed in the mornings because nothing fit and I looked dumpy. I had to do something. I knew I was addicted to sugar. I needed to detox from it. I needed to get it all out of my system. I gave up all sugar, cold turkey. The first few days were hell, but it got easier after that. I gave up diet drinks too after reading much about diet drinks making you fat because your body is metabolizing them the same as real sugar. I'm probably setting myself up for bingeing on sugar again someday. When you are dieting you get everyones advice and opinions. A common opinion is that my cutting out all sugar will make me want it more. I know they may be right, I know I've lost in the past, just to gain again. The thing is, this time I think I get me better. I eat for many reasons, none of them are just to give my body energy. I am not an eat to live person, I'm a live to eat person. So this time I'm taking the time to learn more about my issues around food. Why with my Dad's death did I chunk up, but with my Mom's I got skinny? I know I eat out of stress the most. I used to love the quick sugar pick me up. Sure, soon after I would be crashing, but the sugar high was so good, I would just do it again. I eat the wrong stuff or too much of it. I eat because as a Celiac I am denied so much, I felt entitled. I eat when I'm not hungry because it tastes good. I eat because it is there and I don't want to throw it out. I eat with friends and family, just to be social. There are more reasons, many more and I'm just discovering all of them. I know I have a lot of work to do, I know this is all a very deep seeded issue. So this time, as I journey into more healthy eating, I hope to finally feel at peace with the "whys." This process of detox is not only helping me to stop craving sugar but it is also helping me learn more about me.

Lessons too young

Just yesterday I wrote about Beau's birth. Today Beau is mourning the first death of a friend. Molly died of a virus that apparently spread to her brain. Her family had a vibrant 16 year old girl just days ago. Their daughter played many sports, had a boyfriend and from what I can tell was very well liked by many. Today they grieve her death. Mark said to me "I don't know how I would ever get you through." I broke down in tears at the thought. Our kids are so precious to each of us, we put so much into their happiness. We pray they make good decisions, stay safe and we dream about their futures. We can all relate to the overwhelming grief of Molly's family. We can all imagine the pain because as parents we are bonded, but we can't really get it, because our kids are home with us. Our words of comfort, support and care will do very little. I picture Molly's Mom reliving the moments of her daughter's birth. Those moments of great excitement and of dreams. She is probably looking at pictures of life with her precious daughter. How could this be real. Kids in our community are experiencing a part of life we all are struggling to understand, especially when it comes so unexpectedly. My son is heartbroken and I have no words to help. I can only offer prayers, hoping the people who need them most, feel them.

Memories of Birth, Beau

The memories of my children's births are all but happy to me. I experienced fear and uncertainty every time. The first birth was induced because of being a little overdue and the ultrasound showed a big baby that would just get bigger. The doctor was fearful for my small frame delivering a ten pound plus baby. I was young, relatively speaking anyway and had nothing to base this decision on. Looking back, I wonder if natures way would have been better for my first born. My body didn't respond to the induction well and the baby switched to the sunny side up position, making it difficult to push him out. The doctor offered help, vacuum extraction. He was born, blue and unresponsive with a horrid contusion on his head. I remember hearing Mark saying over and over again "Come on buddy breath" as we waited for someone to say something to us. The team of specialists was rushed in to work on him. My sweet new baby boy was whisked away to the NICU without hardly a glance at him. Phone calls were made by Mark while I stood in the shower and cried silently to myself, trying to be strong in front of Mark. My Mom rushed up to be with us, even though I told Mark to tell her she didn't need to. I was grateful to have her there when we were finally taken to the NICU hours later to see Beau Louis. It would be a few days before I would hold him. He looked so healthy as he lay there attached to many tubes, weighing almost 9 pounds, he looked like a giant compared to all the preemies. I was scared of losing him and didn't let down my guard right away, scared to love and lose I stayed distant to some extent. He would stay about a week at NICU and there would be tests to check for brain damage. It was all very overwhelming, I just tried to process everything thrown at me all the while mourning the birth I expected to have. Family would come to see him but only the adults were able to come into the NICU. One night I went to see him and the nurse offered me that I could hold him. Mark was at a gig he couldn't get out of and I was still in the hospital. I didn't know what she meant exactly, she was changing his bedding and I thought she meant I could hold him just while she did that. I didn't sit down or relax, I just stood there frozen with him finally in my arms, wondering how I could ever love more than at this moment. It was midnight, I had walked down from my room after sleeping restlessly thinking about him constantly. As I stood there holding him for the first time I wished for Mark to be with me. Shortly after that thought went through my head Mark walked in in his tux from playing the gig. I stood there crying as he walked over and I said to him "I want to offer to let you hold him, but I just can't." He understood and we embraced as a family of three for the first time, me in my pink nightgown and him in a tux, the nurse took our first family picture. The next day we held him all day, finally I was bonding, realizing he would be ok. The tests came back confirming there was no permanent brain damage and we finally started to dream about the future. The night I was released and had to leave him in the care of the nurses was more difficult than I could imagine. I bawled as the elevator door shut and we headed to the car. Mark held me and just let me cry, saying nothing, just rubbing my back like a small injured child. When Beau was released from the hospital on a Sunday morning, we stopped at the one place I wanted to go, our church. It was the end of the service, in the outdoor sanctuary and we walked down the path as we heard a voice offer our new baby up in prayer. The love I felt overcame me and I knew we would all be ok, surrounded by the love of the church family, each other and especially by God.

End the Use of the R Word

Today is National, "End the use of the R Word." My feelings around this word have changed much over the years. I'm sure as a kid I too used it as a word with power to hurt my enemies. It certainly wasn't talked about as being hurtful toward people who were diagnosed retarded when I was young. We hardly had any awareness training of people with disabilities. Sure there were a few kids who had "issues" or hearing loss or the one boy in the wheel chair. Those kids were just part of life for me in school and not much was spoken about them. We would have benefited from some training I'm sure, but I think the attitude was to not talk about them because it would hurt their feelings. The other similar word used as a weapon when I was young was BOCES. I never truly understood what it meant, that seems ironic in my life today. The first time I heard someone call Teale retarded my heart sank, I had never thought about her as retarded, just as a slow learner, developmentally delayed was the politically correct term always used to describe Teale. The person who used it to describe her had very little idea how I would react. She was our service coordinator at the time and she obviously thought I had been told this diagnosis many years earlier. The funny thing is, it was in a heated discussion with her that she said it. I was letting her go because of lack of support and care and she threw it out there like a child uses the word as a weapon. I wanted to strangle her, not only had she been a horrible service coordinator, but she was now calling my precious daughter a name I had never heard used before. My blood boiled and I attacked back, telling her no one has ever diagnosed Teale as retarded. I was angry and hurt that the one person who was supposed to be looking out for my daughter had no clue what her issues were. After the heat of this confrontation passed, I started researching the definition of retarded. The definition I could not dispute that fit Teale was an Intelligence Quotient score under 70. I started looking at the word differently, letting go my anger about how it was presented to me and realizing, it's just a word, it doesn't define my daughter. It is used to give information about her skills, just as "legally blind or has Cerebral Palsy" are used. Basically I changed my thinking about the R word and came to accept it as just part of who Teale is. I'll never accept the R word, but the fact that she has a low IQ, that I am past. I love that there are movements such as "End the Use of the R Word," we have all come far in accepting and living with children and adults like Teale in our everyday communities. She may have a low IQ, but she is a teacher to many.

Type A people living a Type B life

Mark & I were trying desperately to get a few things done today. We were both wandering around looking for tools or parts of what we needed to fix what we wanted. As we both ended up in the laundry room, scavenging through unorganized drawers of miscellaneous stuff, Mark says "this is like another episode of we are Gods entertainment." I say "what?" caught up in the crap we have accumulated and having no clue what half of it is or why we kept it I was barely hearing him. He explains "Us, this, we can't find anything we are looking for, can you imagine God right now, he is probably up there laughing at us, isn't this a good one, look at them wandering around, funny." I thought about what he said and laughed with him but quickly realized we were looking at the day totally differently. I was thrilled to be with him & to not have any crisis hanging over my head. We are so often in crisis, a peaceful day of trying to accomplish a few things seemed pretty nice to me. I wasn't mad or even all that frustrated by the disorganization of our stuff. It's not always like that though, sometimes I just want to scream it frustrates me so. We used to be Type A people, fairly organized, the house was generally always tidy & clean. I used to like to decorate for different seasons and holidays, even the little ones like St. Valentines Day. We both appreciate being on top of stuff, having paperwork done and laundry put away. When I start a project, I like to finish it, completely. Having Teale changed all that, she is completely unpredictable & we need to be flexible to get through life. Teale can suddenly be in crisis, not sleeping or having some sort of mental or physical issue that takes all our energy. I believe Mark & I have adjusted well to this. I believe we both struggle with it and sometimes wish for the calmness of a life we once had. But today, as I analyzed Mark's frustration, I realized how far I've come. I appreciate the little things more, like a day with my husband and children home and the peace in the house. Someday I know I will "catch up" and it will feel good to be living my Type A personality life again, but for today, I'll just be happy with what I do have, moments of peace, incredible patience and much love.

Father Daughter Valentines Dance

"I dance with you?" It was a constant memory, passing by the high school where the dances had been held, suddenly she would remember. Looking at a picture with her handsome father all decked out in his tux, just for her, she would get giddy. All year it would creep into conversations. The last year she was young enough to go to it was upon us. It held a lot sadness, a typical thing to do with her Dad, but all her "friends" had outgrown it many years earlier. She would want a pretty dress and grown up shoes, but the shoes, ugh, the shoes were such a problem. Her cerebral palsy caused her right leg to be weak and her ankle would turn in unstable shoes. There was no way she could wear even a small heel like typical preteens. Pumps or even low ballet shoes, would be an issue. Her smaller right foot could slip out of a shoe that fit her left foot and she could possibly fall. I had kept my eyes open for shoes that would make her feel grown up but that she would not kill herself in while walking or dancing. I had lived through leg surgery with her and there was the time she slipped dancing The Electric Slide in our house and had broken her leg. That story will have to wait but living through those two times with her in a cast, I knew I didn't want to take a chance. In past years I had satisfied her want for fancy shoes with glittery sneakers or little girl patten leathers with a strap to keep them on. Thinking it all out, I wondered if anyone had any idea how much thought I put into such simple things? I wondered if she even got how much my mind churns trying to help her feel just a little bit "normal." Maybe my husband, Mark gets it, but he is probably the only one. I wanted this year to be special, she had loved the dance previous years and I knew we were making memories for her. I knew the rec. would probably make an exception and let her come next year, but technically, this was it and maybe it should be? Maybe exceptions should not be made, after all it is part of growing up also, excepting that you have outgrown something. Standing at the store I analyze shoes, my friends keep an eye out for some too, calling my cell if they have a find. Finally, I just buy three pairs, hoping with all my heart one of them fits her. She could have her whole day ruined by such a mistake on my part. She could rage and the dance would be a failure if I bring home shoes she likes but can't fit into or walk in. I hold my breath as I try them on her feet, her excitement grows, but I've blown it, none of them work. I backtrack, figuring I can get the bigger size and one of them will be ok. She is forgiving and understanding and I'm grateful as I run back to the store one more time. The shoes look good and she likes them. They are off to the dance, but soon into it a text from my husband says he is in trouble. He gets more desperate and calls me, she is raging at the dance because she is sure "someone was looking at her." She is sure other kids see her as different and are staring at her, it makes her angry and no reasoning with her can occur. I pick her up so Mark can stay with our younger daughter who is having a good time with the many friends she has. Heartbroken, I want to cry, her last chance at this memory, her little sister with friends and her with not a one. Sometimes I can't think too much about it or I'm afraid my heart will just break into a million pieces. Sometimes the shoes are all I can give her...