Chapter 1
She was born in 1989, February 21st. I graduated high school that same year. I was the only one in my class whose parents had to find a babysitter in order to come to graduation. My dad was out of town and I was “on call” in case my mom went into labor. Not a typical role for a senior in high school, but many things about my life were not typical. When my mom first thought she might be pregnant, she actually thought the best plan of action would be for me to stop in the local grocery store to pick up an EPT. The obvious conclusion most people would come to was lost on my mom, she was so caught up in her own situation, she could not see what everyone else would see. So, I did it, cringing as I walked down the aisle and stopped in that section, quickly walking to the check out and choosing an empty line, refusing to make eye contact with the clerk, all in an attempt to hide my face and spare the embarrassment of explaining that indeed I was not pregnant, no sirree, just my mom (as if anyone would believe that story!). Anyway, all week, I had been waiting to be urgently called out of class to go get my mom. It was rather anticlimactic when, after my English class, I noticed a pink message slip on the door of my locker. It simply said to call home. I did, my mom was having contractions and thought it might be a good idea to go to the hospital soon. No sense of urgency whatsoever, indeed very anticlimactic. I located my brother (he was a freshman) and we drove home, at the speed limit, to retrieve mom. My dad made it in time for the big moment, and joined the delivery room full of family to witness his fourth child entering the world. She was beautiful, perfect in all visible ways. She had all the requisite body parts, a nice round pink face, a good head of dark hair, and she scored in the normal range of the Apgar test. Everything looked good. There was only one problem. She had no name. For months, we had been going round and round on names, we could never agree. My mom was into the jewel names, Pearl, Opal, Ruby and such. My brother and I were adamantly opposed, no sister of ours would be allowed to endure such tortures. We put together various combinations of family names, but still we could not agree. It was four days later that Joanna Elaine was randomly thrown out by my brother, and funnily enough, we all loved it. It was perfect and it was final. The birth certificate was signed and we went home.
The first several months were blissful, isn’t that what you are supposed to say, what everyone expects you to say, when you have a newborn in the house? Our house was just small enough that her crying all night kept us all up. My brother and I had a hard time getting up for school, my parents were exhausted, our other sister (only 2 years old) was too young to know just how much everything had already changed. We all chipped in, we were expected to. It was our job to help with bottles, baths, babysitting, grocery runs, cooking, all of it. We were all so busy, so weary, but also so enamored with Joanna that we did not notice the first signs. We coddled her, we did everything for her, it took us quite some time to notice that she was not doing things that she should have been doing for herself. One of the first obvious signs of what was to come came one afternoon. My boyfriend picked her up under her arms and swung her up in the air. She immediately and totally stopped breathing, her face turned an odd blue color and we freaked out. She recovered quickly, but the event spurred some doctor visits, questions, tests, more doctors, more tests. She spent several nights hooked up to a heart monitor, they ran MRI’s, there were no obvious answers. But, other symptoms began to make themselves more apparent. She was delayed in her sitting up, her crawling, her standing. Her verbal skills were not what is in the normal range, we were all concerned. Eventually, we got one answer, an answer that was mysterious, sort of an unknown: Autism.
Tuesday, July 6, 2010
Prologue to LADYBUG
Prologue
She would be 21 now. She would be driving, a red VW bug is what I picture her in. Red, like a ladybug, shiny and new. That would be the most fitting, at least to us it would be. Her whole life, we have all symbolized her with a ladybug.
I spent the summer after my sophomore year of high school in Portugal and discovered that “joaninha” was Portuguese for ladybug. I discovered this only because of a tasty chocolate covered, ladybug shaped cookie made in Lisbon, with red and black ladybugs on the packaging. So, two years later, when my brother randomly came up with the name Joanna for our 4 day old, yet unnamed baby sister, it was only natural that we began to shower her with ladybugs.
It’s funny though, we do not know if she liked ladybugs, much less liked being showered with them. I have always said that it would be bittersweet if one day she ‘snapped’ out of it and her first sentence was something to the effect of, “what is it with you people and ladybugs?” Bitter, in that she has been flooded with every kind of ladybug imaginable for her entire life, 17 years to be exact. Even now, ladybugs are exchanged amongst our family as we struggle to deal with her life, as we struggle to keep the connection. She had ladybug pictures, a bedside rug, throw pillows, stuffed animals, a big fuzzy soft blanket, jewelry, socks, panties, t-shirts, PJ’s, house shoes, all kinds of books with ladybugs as the main characters, bags, purses, stickers, magnets.
Ladybugs perpetrated our entire house in the forms of hot pads, coasters, towels, fan pulls, soaps. My mom even has a ladybug tattoo, a very small tasteful tattoo that most people never see, much less would ever imagine she had. She is definitely not the type to have any kind of body art, but it seemed somehow appropriate and we daresay normal for her to have a permanent ladybug on her body.
Most recently, ladybugs are the main theme of her garden, in our backyard, behind the swimming pool, nestled in a crook by the pool fence. There, ladybugs adorn a bench, a stepping stone, a bird feeder, a children’s swing.
And we, the girls in her family, all have tiny silver ladybugs hanging on black leather strings on our necks. Most days, we all wear them because it is surprisingly difficult and somewhat tear jerking to decide not to wear it in order to wear something else.
I said bittersweet. Bitter because what would become of 17 years of ladybugs? How could we possibly give up a lifetime collection of this symbol if she were to tell us she hated them? But, sweet because just hearing her utter a sentence, a question, a phrase, or even a word would fill all of us with an indescribable joy. She has not ever been able to talk, not in the normal sense of the word anyway. There were some words in her younger years that we all came to recognize, much in the same way parents marvel at their toddlers first string of language.
Slowly, from age 3 until about age 9, she built a limited base of vocabulary. I mostly remember the names she called us: Igi (Jenny), Ama (Adam), Taty (Katy), Mack (Max), Daddy, and Mom. We also often heard her yelling NO for many varied and strange reasons. Handfuls of other words made their way into her early collection and at her peak, she was able to put 3 or 4 together in a toddler-like sentence or question.
She also signed a lot in those days. Her favorite signs were “potty” (a fist waved up and down with the thumb on the outside flat up against the pointer), “eat” (all four fingers and thumb joined in a large pointing gesture touching the lips), and “more” (the same large pointing gesture with both hands pointing at one another back and forth). Everywhere we went she loved to go to the potty. She would go as many times as anyone would take her. I mean anyone, literally. She would sign this to any walking person, she did not reserve potty requests for us. No, she reached out to strangers with her hand sign, pleading with her beautiful big brown eyes and mesmerizing smile, for someone to please take her to the potty. She quickly attracted the attention of many. Our whole family made friends of strangers who were drawn to her in restaurants, grocery stores, malls. Everywhere she went, she was a people magnet, a most unforgettable girl.
She loved to eat and she always wanted more. She liked to have good food, things like doughnuts, cookies, cheeseburgers. These treats excited her, her whole face would light up and her perfectly unique, yet always mischevious smile would fill her face as she devoured first servings and habitually requested more with her sign.
For many years, we have not heard that sweet voice calling our names. Nor have we seen her skinny childlike hands signing to us her requests. We have only had occasional sounds, deep gutteral moanings. At best, signaling a shallow gut instinct to communicate. At worst, an audible plea for someone to help her out of her misery somehow. My mom has always said that she was in fact “talking” to us and that she did know what was going on. She insisted that her sounds indicated her mood, that she was fully alive inside. She went as far as to say that she understood some of them to mean things, such as “no, more, go” and other such communication that would indicate what she wanted or desperately needed from someone. Me, I chose, well not chose as much as forced myself to believe that she did not know what was going on. I had to tell myself that the sounds were just involuntary, nothing much more than bubbles of air making their way out of her throat. I had to trust that God would not allow her to experience such tremendous suffering and keep her brain alive to live with it. Selfishly, I had to trust that she was gone a long time before she stopped breathing.
She would be 21 now. She would be driving, a red VW bug is what I picture her in. Red, like a ladybug, shiny and new. That would be the most fitting, at least to us it would be. Her whole life, we have all symbolized her with a ladybug.
I spent the summer after my sophomore year of high school in Portugal and discovered that “joaninha” was Portuguese for ladybug. I discovered this only because of a tasty chocolate covered, ladybug shaped cookie made in Lisbon, with red and black ladybugs on the packaging. So, two years later, when my brother randomly came up with the name Joanna for our 4 day old, yet unnamed baby sister, it was only natural that we began to shower her with ladybugs.
It’s funny though, we do not know if she liked ladybugs, much less liked being showered with them. I have always said that it would be bittersweet if one day she ‘snapped’ out of it and her first sentence was something to the effect of, “what is it with you people and ladybugs?” Bitter, in that she has been flooded with every kind of ladybug imaginable for her entire life, 17 years to be exact. Even now, ladybugs are exchanged amongst our family as we struggle to deal with her life, as we struggle to keep the connection. She had ladybug pictures, a bedside rug, throw pillows, stuffed animals, a big fuzzy soft blanket, jewelry, socks, panties, t-shirts, PJ’s, house shoes, all kinds of books with ladybugs as the main characters, bags, purses, stickers, magnets.
Ladybugs perpetrated our entire house in the forms of hot pads, coasters, towels, fan pulls, soaps. My mom even has a ladybug tattoo, a very small tasteful tattoo that most people never see, much less would ever imagine she had. She is definitely not the type to have any kind of body art, but it seemed somehow appropriate and we daresay normal for her to have a permanent ladybug on her body.
Most recently, ladybugs are the main theme of her garden, in our backyard, behind the swimming pool, nestled in a crook by the pool fence. There, ladybugs adorn a bench, a stepping stone, a bird feeder, a children’s swing.
And we, the girls in her family, all have tiny silver ladybugs hanging on black leather strings on our necks. Most days, we all wear them because it is surprisingly difficult and somewhat tear jerking to decide not to wear it in order to wear something else.
I said bittersweet. Bitter because what would become of 17 years of ladybugs? How could we possibly give up a lifetime collection of this symbol if she were to tell us she hated them? But, sweet because just hearing her utter a sentence, a question, a phrase, or even a word would fill all of us with an indescribable joy. She has not ever been able to talk, not in the normal sense of the word anyway. There were some words in her younger years that we all came to recognize, much in the same way parents marvel at their toddlers first string of language.
Slowly, from age 3 until about age 9, she built a limited base of vocabulary. I mostly remember the names she called us: Igi (Jenny), Ama (Adam), Taty (Katy), Mack (Max), Daddy, and Mom. We also often heard her yelling NO for many varied and strange reasons. Handfuls of other words made their way into her early collection and at her peak, she was able to put 3 or 4 together in a toddler-like sentence or question.
She also signed a lot in those days. Her favorite signs were “potty” (a fist waved up and down with the thumb on the outside flat up against the pointer), “eat” (all four fingers and thumb joined in a large pointing gesture touching the lips), and “more” (the same large pointing gesture with both hands pointing at one another back and forth). Everywhere we went she loved to go to the potty. She would go as many times as anyone would take her. I mean anyone, literally. She would sign this to any walking person, she did not reserve potty requests for us. No, she reached out to strangers with her hand sign, pleading with her beautiful big brown eyes and mesmerizing smile, for someone to please take her to the potty. She quickly attracted the attention of many. Our whole family made friends of strangers who were drawn to her in restaurants, grocery stores, malls. Everywhere she went, she was a people magnet, a most unforgettable girl.
She loved to eat and she always wanted more. She liked to have good food, things like doughnuts, cookies, cheeseburgers. These treats excited her, her whole face would light up and her perfectly unique, yet always mischevious smile would fill her face as she devoured first servings and habitually requested more with her sign.
For many years, we have not heard that sweet voice calling our names. Nor have we seen her skinny childlike hands signing to us her requests. We have only had occasional sounds, deep gutteral moanings. At best, signaling a shallow gut instinct to communicate. At worst, an audible plea for someone to help her out of her misery somehow. My mom has always said that she was in fact “talking” to us and that she did know what was going on. She insisted that her sounds indicated her mood, that she was fully alive inside. She went as far as to say that she understood some of them to mean things, such as “no, more, go” and other such communication that would indicate what she wanted or desperately needed from someone. Me, I chose, well not chose as much as forced myself to believe that she did not know what was going on. I had to tell myself that the sounds were just involuntary, nothing much more than bubbles of air making their way out of her throat. I had to trust that God would not allow her to experience such tremendous suffering and keep her brain alive to live with it. Selfishly, I had to trust that she was gone a long time before she stopped breathing.
Stress
I wrote this a little more than a year ago. I took a much needed break from the search for a principal position. Now, I am about to jump back in. After reading this, I am forced to think long and hard!! But, one year older, one year wiser, right??!! I can handle it, I know I can! :)
Stress is like a snowball rolling down a hill, not only catching momentum but also growing in size. I knew I had some stress, but the full effect it was taking on me did not hit me until I peed the bed. I don’t mean a little bit, the crazy accident where you wake up just as you start to go and run to the bathroom, all the result of a dream in which you are actually at a toilet and it is okay to go. No, I mean the full deal. I never woke up, I am 37, and I peed the bed and never woke up. I saturated the sheets, the mattress pad, and the foam underneath. When I finally and wearily was drawn out of my slumber by the cold wet feeling around my legs, it took me a few moments of denial to admit what had happened. When my kids have ever wet the bed a little in the middle of the night, I have just gotten a large bath towel to cover the wet spot until morning, when changing sheets is a little more bearable. But no bath towel I owned was going to cover my spot. So, I had to wake my husband. What exactly do you say in this situation. No sooner did I start than I began to laugh so hysterically I could not even get a word out. Between fits of laughter, I eeked out the news: I peed the bed, we have to change the sheets. I know that he could hardly believe me, but thankfully he just rolled out of bed and snapped into action, pulling off the sheets, and yes, hesitating slightly when he saw what I was talking about. “You did that?” he asked. “Yes, I did” I replied, laughter turning into tears, tears turning into sobs as the reality of my mental state hit me. I wondered to myself how in the world I could have reached this point. I feel more stressed than I can handle. I feel that I have lost a certain amount of control, I start to feel hopeless and then the familiar sensation of panic sets in. I don’t feel like I can catch my breath, my heart is pounding, and it feels like there is a large elephant sitting on my chest. I crumbled to the floor and just cried, that deep heavy cry that involves your whole body. My husband stopped changing the sheets to bring me tissues and a shoulder to cry on. It was at this moment that I finally stepped back to admit that I was overwhelmed. Enough was enough, I had to cut out some of my stress or find another way to deal with, that was very obvious.
When I think back on the past few months, I have been totally and completely focused on a career change. I am a mom to two beautiful perfect children, who are now 5 and 7 years old. My husband and I have been married for 14 years, not a perfect marriage, more on that later. But, he loves and supports me one hundred and ten percent. I love him too, and I love the family we have created together. I am also a teacher, I have taught middle school spanish for 14 years at the same school. Lately, I have had the itch to take the next step in my career and become a principal. I know, glutton for punishment, but this is part of the dream I have always had. I love to be the boss, to be in charge. I love to be in control and to help inspire greatness.
Stress is like a snowball rolling down a hill, not only catching momentum but also growing in size. I knew I had some stress, but the full effect it was taking on me did not hit me until I peed the bed. I don’t mean a little bit, the crazy accident where you wake up just as you start to go and run to the bathroom, all the result of a dream in which you are actually at a toilet and it is okay to go. No, I mean the full deal. I never woke up, I am 37, and I peed the bed and never woke up. I saturated the sheets, the mattress pad, and the foam underneath. When I finally and wearily was drawn out of my slumber by the cold wet feeling around my legs, it took me a few moments of denial to admit what had happened. When my kids have ever wet the bed a little in the middle of the night, I have just gotten a large bath towel to cover the wet spot until morning, when changing sheets is a little more bearable. But no bath towel I owned was going to cover my spot. So, I had to wake my husband. What exactly do you say in this situation. No sooner did I start than I began to laugh so hysterically I could not even get a word out. Between fits of laughter, I eeked out the news: I peed the bed, we have to change the sheets. I know that he could hardly believe me, but thankfully he just rolled out of bed and snapped into action, pulling off the sheets, and yes, hesitating slightly when he saw what I was talking about. “You did that?” he asked. “Yes, I did” I replied, laughter turning into tears, tears turning into sobs as the reality of my mental state hit me. I wondered to myself how in the world I could have reached this point. I feel more stressed than I can handle. I feel that I have lost a certain amount of control, I start to feel hopeless and then the familiar sensation of panic sets in. I don’t feel like I can catch my breath, my heart is pounding, and it feels like there is a large elephant sitting on my chest. I crumbled to the floor and just cried, that deep heavy cry that involves your whole body. My husband stopped changing the sheets to bring me tissues and a shoulder to cry on. It was at this moment that I finally stepped back to admit that I was overwhelmed. Enough was enough, I had to cut out some of my stress or find another way to deal with, that was very obvious.
When I think back on the past few months, I have been totally and completely focused on a career change. I am a mom to two beautiful perfect children, who are now 5 and 7 years old. My husband and I have been married for 14 years, not a perfect marriage, more on that later. But, he loves and supports me one hundred and ten percent. I love him too, and I love the family we have created together. I am also a teacher, I have taught middle school spanish for 14 years at the same school. Lately, I have had the itch to take the next step in my career and become a principal. I know, glutton for punishment, but this is part of the dream I have always had. I love to be the boss, to be in charge. I love to be in control and to help inspire greatness.
Hopes and Dreams for AB
Our constant prayer is that Annabelle is happy, healthy, and safe. As she grows up and her personality becomes so uniquely special, we hope that she will always keep her sense of self-confidence and her happy spirit. We hope that she follows all of her dreams and reaches her goals. We hope that she always knows how much we love her, how important she is to us, and what a brightness she always adds to our lives. We hope that she matures into a graceful, kind, beautiful lady who lives life to the fullest and enjoys each moment. We wish that she always have close family and friends who love, support, respect, and cherish her as much as we do.
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