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Thursday, March 31, 2011

Some Days are Just Frustrating...

Yesterday I had a zillion things on my mind I wanted to get done, but my Mother in law had other plans for me. She moved in with us in October and if I am asked how it is, usually I say "she is a pretty easy housemate." Lately though, my answer has been "tough!" My Mother in law, like many older people seems to have no natural feeling for thirst anymore. Getting her to stay hydrated is practically a full time job and yes, it is my job. She sighs, grumbles, complains and argues every time I hand her a drink. Some days it is worse than others and yesterday was one of them. I have tried all sorts of methods to get her to drink the eight glasses a day that is needed to keep her healthy. Often it feels like I have a fourth child to care for, but this one is quietly oppositional. She will act like she gets the importance of staying hydrated and then turn around and ignore my pleas to drink. When she is on her own, she never pours herself something and can go five hours without even a sip of water. You may be wondering why this is so upsetting to me, so let me explain. My Mother in law is 83 years old and in my care. I don't take this job lightly, after all she is the Mother of the man I love more than anything else. Many symptoms come out when she is not hydrated and I find it frustrating that something so simple as drinking 8 glasses a day is so difficult to accomplish. Her memory function decreases when she is dehydration and she repeats herself constantly. She has had several UTI's that also cause her to be overly tired and very oppositional. Her gait is off and she has been dizzy, even fallen a few times because of not drinking enough. This week has been especially frustrating. She is currently battling another UTI. Also a new medication made her nauseous, causing even more dehydration because she could not drink or she thought she would be sick. Every day is a challenge to get her to drink those eight glasses and often we fall short by at least one and often two. So everyday I feel like I'm trying to catch her up. When she slept all day on Monday, she barely drank, so Tuesday I pushed fluids harder, but with much resistance. The care of her has been changing quickly as her health seems more and more fragile to Mark and I. I know I am doing the best I can, but somedays I just wish it would be a little easier. Mark calls me on his way home everyday and lately I am just ready to explode as soon as I talk to him. I want so much to get his Mother well and keep her as healthy as possible. Some days all I feel is her passive aggressive attitude toward me and it hurts. I think I am trying to understand the losses of independence she has experienced and that it is not me she is really angry at. As she often says "getting old is not for sissies."

Monday, March 28, 2011

The Dentist

I took Teale to the dentist today, stupidly assuming all would be fine. She has gone to the same dentist at Eastman for years and he's done very well with her. The problem was, they changed dentists on Teale and did not communicate all her issues well to the newbie. The new dentist was young and cute with lots of spunk and way too many words for my deaf child. She talked a mile a minute, explaining too much and not looking at Teale. She didn't know any of Teale's history and went into the task with no understanding of what Teale would need. I, the naive Mom, thought her previous dentist had prepared the newbie but quickly realized I was dead wrong and in big trouble. The dentist asked a few questions about medical history, but she was not really listening to me. Don't these professionals know that Moms of children with severe issues don't want to tell their life story in a few minutes and in front of our children? I realize she needed more of an understanding of how to handle my child, but this was not a good way to do that. As I tried to cue her into some of Teale's fears and idiosyncrasies Teale started to meltdown. She began kicking, kicking her sneaker right off. She started to scream as loud as she could. In general she looked like a raging animal, out of control. There was a slew of people who quickly moved in on us, making Teale behave even more violently. I knew I was done and needed out, but they wanted to correct the mistakes they made by not being prepared in the first place. I tried to explain, reason and help Teale, while way too many people stared and talked about us. Three months waiting for her specialized dentist and not one thing was accomplished. We lost ground on years of getting her used to going to the dentist in a ten minute period. I walked out with Teale screaming at the top of her lungs. The stares were piercing, as I could hear whispers about my bad parenting. I noticed my face didn't flush as I walked out with my head held high. I just didn't care what people were thinking. I was doing the best I could with a child who often doesn't understand her world. If the dentist had prepped, it might have gone much better, but at this point, I can't change what happened. I called Mark for support and fell into tears. The last few days have been so wearing, this was just too much. How will I ever get her decent dental care. The long ride home was fearful for me, I've been in cars alone with Teale in rages but sitting in the parking lot would be bad too. Moving toward home, toward safety was the best thing to do. She was still raging, screaming that she wanted "her dentist." I said a prayer for God to get us home safely and drove. On the way home I wanted to bawl, I wanted to scream, I wanted to freak out at someone, why is everything so difficult for my daughter? I just drove praying my feelings would pass and Justin Bieber's music would sooth her...

Sunday, March 27, 2011

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. 

Wednesday, March 23, 2011

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.

Saturday, March 19, 2011

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.

Friday, March 18, 2011

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.

Wednesday, March 2, 2011

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.