Archive for the ‘cleft palate’ Category

Differences

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Occasionally with my morning tea I play on the website Game Duel. This international site has all of the regular games for free; solitaire, Crazy 8s, Yahtzee and so forth. After waking up, I enjoy playing against other players as a semi-introduction to the social world, (before I actually have to be wide awake and sociable in the real world.) This morning, while playing Crazy 8s, my other two opponents were texting in Russian. Although they were surely texting trivialities such as “good morning”, “here comes a bad card”, and “nah nah nah nah nah nah”, my heart was immediately struck with fear. In this era of terrorism, and growing up in an age when the Russians were our enemy, I was irrationally frightened they were planning an attack on the US or something else negative. Worse yet, that they could tell who I was through my computer.

Prejudicial.

When driving through the Deep South in the early 60s, my father would take Route 302 instead of the highway, (which may or may not have been built at that time.) As a child, I was frightened at the attitude towards African Americans. There were “white” and “colored” signs above the bathroom doors, with a significant disparity between the two. I heard the local folk call the African Americans the “n” word, and talk down to them. Their attitude frightened me, and I could not understand why they would do such a thing.

Prejudicial.

When my brother was born with Rubella Syndrome with a massive cleft palate, developmental delay, hearing impairment and vision impairment, my four-year-old little self loved him to pieces. Not being familiar with all of the intricacies of babies, he looked just fine to me. As we grew, other people’s reactions to him upset me. They often recoiled as though in horror and I would wonder why. Other children called him the “r” word and point and laugh. Through the eyes of my love for him, I didn’t see anything funny about the situation. His mouth may have looked a little funny, but didn’t they see the glorious gleam in his blue eyes?

Prejudicial.

When my great aunts would visit from Michigan, they would sleep in my room on the big double bed and I would sleep in a cot in my parent’s room. They were elderly, but still had a lot of spunk. My mom would take them dancing at the senior center where they would dance with gusto to their favorite line dances. They were very affectionate women with my family and between themselves. I thought nothing of their holding hands while watching tv, but others talked in hushed whispers. It wasn’t until I was an adult that I realized that Aunt Mina and Aunt Betty were gay, and that they had to hide their “gayness” in the confines of our home because others in the community wouldn’t understand, thinking there was something wrong with them.

Prejudicial.

Fast forward to our adoption of Marie at the age of 7, who was deaf and had been severely abused. She was a wild one; untamed, disrespectful, destructive, stealing things at the store, and begging from strangers when given the chance. (I learned to stay by her side and intervene before she even got close to anyone unfamiliar.) She refused to wear girl clothes, insisting on wearing boy’s underwear, pants, shirt, shoes and socks. (This caused a slight problem at McDermott Pool, which had a strict “no shirt” policy 15 years ago. Because she insisted on wearing boy’s swimwear, she obviously needed a shirt!) She would tell everyone, (in sign language,) that she was my son. At her annual check up at the age of 8, she tearfully asked her pediatrician if he could sew a penis on her. As a very sympathetic doctor, he understood that her needs were different than other children’s. He gently took slim her hands into his big ones, and looked into her deep blue eyes, (which darted back and forth between his face and myself, who was interpreting what he said in ASL for Marie.) He said that it was possible to sew a penis on her, but that she had to wait until she was fully grown to make that decision. Relieved that at least it was a possibility in the future, she was consoled. In the meantime, she could continue to be a boy without the extra attachment. Since that time, with intense counseling, she confessed she only wants to be a boy was so that men wouldn’t hurt her. She continues to dress and profess to be male, but is not interested in getting the proper anatomical equipment. Her choice of male attire, now plumply filled out in the bust area, has been cause for concern for many. For her, and many other actual transsexuals, life is met with stares and disapproval.

Prejudicial.

My ever-optimistic brain would like to think that people have such negative reactions for the same reason I was fearful of my Russian opponents this morning; because they don’t know any better. If only everyone would just accept people as they are; to be valued and respected for their uniqueness….

 

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Just Like a “Call the Midwife” episode

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For some odd reason, I love the show “Call the Midwife”. Every conceivable scenario for “birthing babies” (obscure reference to “Gone with the Wind”) is explored. For this reason, I will be sharing the birth of my brother.

I got swept into the drama of childbirth at the tender age of four, an early memory that was etched into my tender brain. Several months before my mom was supposed to go to the hospital to get her new baby, my dad ushered both of us into the car, handed me a very large bag of Hershey kisses and dropped me off at my grandparents. My grandparents were not your usual huggy kissy type, but the standoffish, can’t stand kids type. So I sat there alone in their oven of their Floridian sun porch, eating Hershey kisses and watching Captain Kangaroo and Howdy Doody on their tiny tv. As the chocolate melted, it was imperative to eat them right away, which, of course, I did! Covered in melted chocolate, I was able to enjoy the taste for quite a while afterwards, licking my fingers and scooping up melted spots from my dress.

When mom came home from the hospital, I jumped up and down in excitement to see my new sibling. Mom was not her cheerful self, but managed to open the blanket to show me my new brother. I had never seen a new baby before, so I thought this one just wasn’t done yet. He certainly was tiny! His baby blue eyes were tenderly open, but in the middle of his face was a gaping hole where his nose and mouth should be. Still had to grow in, I thought in my childlike innocence. He had these huge ears that stuck straight out. He was going to be able to hear everything with those ears! He was a fine looking baby!

In my childhood innocence, and before post-partum depression was a diagnosis, it seemed odd that my mother spent all of her time in bed, crying softly. She picked Curtis up to feed him with an eyedropper, but most of the milk dribbled down the side of his mouth spot. Her tears would continue to fall, and I could tell she was upset because he didn’t seem to want to drink the milk. When she laid him down for his long daily naps, he would make mewing noises like a cat. I thought it was cute until learning later that he was crying.

My childhood was turned upside down. My loving, sweet mom changed. There were no more of her tender kisses and words of encouragement. She didn’t want to play games with me, or go for one of our walks around the block. In her place was a stranger.

I was brave and tried to take care of myself, but my heart ached at the loss of my mom. She spent all of her time in bed, sleeping or quietly crying. She continued to try to feed Curtis, but most of the time the milk spilled out and she would put him down again for a nap, where his mewing was heard constantly. Sometimes, when she was asleep, I would pull a chair next to his cradle and unwrap Curtis, letting his tiny fingers hold onto one of mine. I would sing songs my mom sang to me, and sometimes he would stop mewing. Time would go by with me sitting there, stroking his bald head and telling him the story of The Three Little Pigs and Goldilocks and the Three Bears. I would be pleased with myself if he would go to sleep and not mew. He looked so peaceful and sweet!

A few weeks after Curtis was born I was sitting in the living room eating out of a cereal box and watching “Lamb Chop”. The sound of the rocking chair in my mom’s room indicated she was again fruitlessly trying to calm Curtis as he mewed. Her room suddenly brightened, as though she had turned on a million lamps. Streams of light spewed out the door of her bedroom into the living room. It was curious and strange, but I was just a kid and saw new things every day, it was no big deal. Returning to watching my favorite lamb puppet sing and dance, I was annoyed that the streams of light made it difficult to a see the tv.

From that time on, the sleeping/crying mom was replaced with my real mom. Carrying Curtis out of her room for the first time, she came over and gave me a kiss and told me she loved me. My own heart softened, and tears started to slide down my cheeks in relief. I had been brave and tried to take care of myself, but having someone else care for me was much preferred.

Mom and I went to the hospital so she could learn how to feed Curtis better. They showed her how to thicken the formula so it would not spill out of his mouth spot. She learned to squeeze little amounts in and wait for him to swallow it. Soon, both Curtis and mom got the hang of it, and he was happily gobbling down the formula. His mewing, which we had become accustomed to, stopped. As weeks went by, he gained weight and I was sure he smiled at me. Of course, it was hard to tell because he had such a strange mouth spot, but his eyes twinkled in such a way that I could tell he was smiling. What a lovely new baby brother!

Fact #1: My brother had been born with Rubella Syndrome, and was hearing impaired, legally blind, severely developmentally delayed and had several physical deformities. He was born this way because when my mother was pregnant, she came in contact with someone who had German Measles. Thankfully, a vaccine was invented to prevent this disease, which can harm more than the carrier.

Fact #2 It was years later that my mom explained what happened that day when the bright light filtered out of her room. She had been rocking mewing Curtis, herself crying and uncharacteristically cursing her life and the life of her deformed, newborn son. Unexpectedly, she was engulfed in an unbelievably bright light that emitted the feeling of unconditional love and encouragement. It washed the sadness out of her, and seemed to tell her everything was going to be all right. She knew it to be a Divine Being, and this experience changed her life, and mine, forever.

 

 

To read the life story of Linda’s sweet brother and Divinely amazing mother, along with her own passion for caring for children with disabilities, please purchase her book; The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane. It is available on Amazon and Barnes and Noble.

 

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