Annamaria

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“There is nothing Annamaria can’t do!” her mother had so much love and joy, I could see the tears of joy in her eyes.

Annamaria was a beautiful baby with big brown eyes, taking the eyes after her Italian father. During the childbirth, the cord was wrapped around her neck. When she had her DPT shot she experienced a seizure, her eyes rolled, blue lips and she was limb. The loving mother was watching over her like a hawk being mindful. There was no 9-1-1 service at the time. She called the pediatrician was told to give her Tylenol.  Mom took the baby to ER, had to wait for a long time since there was a motorcycle accident. Then the baby came out of it. She remembers the baby was having four seizures over a period of time. Mom was trying to feed her baby but the baby would vomit. She remembered calling her mother to come to help. Annamaria was the fourth child and her oldest was just five years old.  Mom was highly stressed to say the least.

On a 4th of July, when the family was in Oregon visiting friends, they were waiting for the fireworks with much joy and excitement. Annamaria was sleeping in her mother’s arms, about 18 months old. The fireworks started and as everyone was consumed watching, the mother was worried for the baby awaking with fear. When she looked at her, she was peacefully sleeping.  She wondered if the baby may have been tired or is there something the matter with her hearing.

 Upon return, she took her to the pediatrician and was told not to worry, she is a healthy baby, it is natural for the mother to worry. Mother said she had raised three other children, knew something was going on. She started testing her at home by making noises behind her, clapping hands, dropping items. Frequently, she didn’t respond, yet at times she would turn around. she wondered if she could see them through the metal plate of her high chair. She trusted her intuition and took her to a clinic in Newport Beach where they had the latest equipment for hearing tests. The doctors tested her with tuning forks. The mother was informed that the child is profound deaf. What made the matters more of concern was that she had sensitive ears and abnormally small tubes. A simple cold or slight infection could block her ear tubes.  They could not implant plugs to drain out the infection. It was suggested for them to go to a meeting of all specialists at UCLA to meet with the best in the field.

Annamaria started signing when she was about two years old using Signing Exact English, then American Sign Language. Mom sent her to Taft Elementary school that had a program for deaf children. Taft Elementary school program for the deaf which SEE is being used. Eventually after elementary deaf students like Annamaria learn mixed sign language PSE and ASL. Back to her early childhood, a deaf lady came to their home to teach the family to sign. Dad was great with languages yet had difficulty with the visual, mom and sister were great in signing.

When she was about eight years old, she tripped over a bicycle that was left horizontally  on the driveway at night. She realized she couldn’t see well at night. Her family loved camping, yet it was challenging for her to find her way at night.

They took her to Jules Stein Eye clinic in LA. They performed many tests and seemed to have found some valid information. It was holidays and they were invited to go back after the holidays. Annamaria was diagnosed with Retina Pigmentitis  (RP) and were informed that the child will go blind at some point. They were devastated!!! Mother, a tower of strength and with endless positive energy, thought my daughter is alive. I am grateful.

According to her mother, this is a child who was born deaf, was diagnosed with Usher syndrome (US) at age eight, was going to be placed in a class for children with multiple handicap and not expected to go beyond fifth grade.

Here is a brief summary of what she shared with me through email.

I’d like to invite you to meet this truly advanced soul with advanced life lessons.

” You were born deaf, how and when your parents learn about this syndrome

“My mom shared they took me to a clinic, was informed that I was deaf. I got hearing aids at Hoag hospital.  Someone told me that I was going to be blind by age sixteen. “

“How is your vision now?”

“I am in my mid 40’s and I can see.”

” I wish that person could see you now. You have three older siblings who were not affected by the gene, and a younger brother who was. Would you educate us as how the  genes operate? random? What are your thoughts/feelings about having this syndrome?”

“My older siblings are the carriers like my parents. It is a recessive gene. I guess me and my younger brother were the lucky ones, yay us! We went to a genetic clinic as a family with all the top specialists at UCLA. My mother said they were highly interested in our genetic pool, measured everything.”

” I wonder what was your understanding as a child. What was your passion/interest growing up?”

“My mom shared I loved cooking with her and I was in girls scouts. I love cooking and baking for my family.” I would love making pizza which is our pizza every Friday. My friends would visit us for some pizza slices. They knew that there will be plenty pizza slices to go around. Also I love making cookies, usually chocolate chip cookies. Sometimes my brothers would sneak in and grabbed some raw cookie dough to snack on. YUM.. I know raw cookies aren’t safe to eat but back then we didn’t know that. Also I loved to bake some cakes then decorate cakes with fancy flowers and such.. It was a special dessert for family after our typical spaghetti dinner.

“How was going to school for you?”

” I went to public schools while my older siblings went to private Catholic school. They didn’t have a program for the deaf children. I went to McFadden Jr High for two years then on to Venado Middle school as a 8th grader and University High school in Irvine. They had very good academic program for the deaf. I bet that my younger brother and I saved a lot money for my parents.”

“Any teasing by others? Your mom shared that you were the only girl with seven boys in a class. I wonder how was that experience for you?”

“I didn’t mind being with the boys and don’t remember any teasing. I remembered that it must be during 4th grade. Deaf classes were usually smaller with just 10 students or less. But I played with my girl friends during recess and lunch times.”

I feel the humiliation whenever I had to leave a class to learn braille during middle school and high school years. I was not READY to learn braille. I felt I was outcast because of this part. I feel I was being forced to learn braille… My braille teacher was so sweet. I liked her but at same time I wasn’t happy. Also I felt I was being forced to learn mobility i.e. using cane..  So imagine yourself during teenager years which is supposedly to be the most difficult stage growing up..  Mobility teacher would come over my house after school weekly.. I always gave him the difficult time.. Yes, it is surprising… usually a very sweet girl turns into very angry girl… I know I gave him a lot of grief… LOL… It is because I thought he was mean… making me do stuff that I don’t want to… He would have me wear black shades to cover my eyes and use the cane to practice.. He would drive me around to some close by neighborhoods to practice using a cane on sidewalk.. My anxiety was high. and it was very EMBARRASSING….  Now I realized that they didn’t come to my life out of blue. This must be part of my mom’s requests. But back in that time, I thought they’re cruel making me learn tools relating to my US. Looking back, it was totally a waste of time and energy.. sorry MOM…  I think my parent’s fears rubbed off on me.. they must have thought that I would go totally blind for sure.. They wanted me to learn how to get around with a cane. They also wanted me to learn how to write and read in braille. I WAS NOT READY. I know they meant the best for me but I think they unknowingly hurt my self esteem big time.

“How about the socialization process?”

“I mostly socialized with other deaf schoolmates. It was easier to communicate. I had some hearing friends. I had to teach them how to sign, taking a long time. But there was a special best friend who used to live across from me, we grew up together since she was 5 and I was 4. I don’t remember teaching her sign language. I assume she just picked up signs from me or my family. We used to get together almost everyday. To this day, if we haven’t seen each other for long time then meet up.. she didn’t forget her signs at all. It is like we picked up conversation like it was just yesterday.

“How about in the family?”

“I was closer to my younger brother. We have much in common with issues related to deafness and blindness. We have our circle of friends. Other siblings took their time to spell or sign to communicate with me and my younger brother. I am very grateful to have them in my life. This shows me how much they love us. ❤

“How about dating?”

“I dated some deaf boys but none ended up in long term relationships. There was not many choices as it was before social media ie Facebook era. Back then, my deaf world was small.  Then I met my ex-husband from another area through some mutual friends. My parents became strict when we started dating, wouldn’t let me get a driving license when I was sixteen.  When I asked, I was told; you are a girl and your vision is of concern, while they bought a red VW for my younger brother.”

“Ouch. I can imagine at the time you may have felt having been treated unfairly. Knowing your parents, I wonder if they were more protective of you.”

“I started rebelling against my parents. My ex-husband taught me how to drive on a stick shift car, much harder. When I learned to drive, my dad took me to DMV on his blue Toyota Corolla and I passed the test with flying color.”

“Wow, what courage!! You are a true Sagittarius! a free spirit. I agree with your mom that nothing can stop you from your goal.”

“What happened in your first marriage?”

“We got married. As I look back, I feel I had some issues with my self-esteem. I was working full time, working over time, going to school full time and became increasingly aware of his addiction issues. When he suggested to separate, instead I asked for divorce. Thank God there were no children.”

“What did you study in school?”

“Child Development and graduated from CSUF. I took about a year and half to do self discovery, and what I wish in life. I met my husband at work. We communicated with letters for first few months. He invited me out to dinner and we went to Olive Garden. He brought some paper and pen. He learned to sign quickly, a fast learner, writing is hard. He asked me to be his girlfriend on a New Year, 18 years ago. He is a Catholic and wanted us to get married in the church. I asked for annulment, a slow gradual process and finally I was granted. After six and half years we got married.” I feel I am very lucky to have him in my life as a husband. Bless his big heart, he has so much patience for me. 🙂

“How is life for you now?”

“We have two children, both hearing and they know how to sign with me. Jasmine, our daughter is four years old, still too young to attend pre-kindergarten per school district. I am teaching her at home. Our son goes to school. I stopped driving, my choice, didn’t want to risk having an accident, however, I am going to check with my eye doctor and DMV and explore the possibility of limited driving during the day around home in safe zones. When I was driving, I would always park far away from traffic.”

“How is daily life for you now?”

“Very busy with raising the children. In our marriage, we have the usual misunderstandings related to deaf issues, yet we have been able to pull out of it. What marriage is 100% perfect? Do you know any? I bet not.”

“What were some of the most challenging experiences in your life? What helped you to overcome them?”

“I think one of the most challenging experience was letting go of driving when our daughter Jasmine was born four years ago. I am an independent person and asking for rides from my husband, family and friends was weird for me. I was concerned about safety of our children, myself and others. The truth is that there are many people who drive and don’t know they have RP until much later in life.”

“How is your relationship with your Higher Self? How is your spirit inside?”

“Hmm, I am not sure how my spirit is. I guess I’m content.” Maybe I should cross this out..

I had to look up what is Higher Self, Ellie. 🙂

My higher self is important to me and I try to follow my guts and intuitions as much as I can. My spirit is glowing brightly as a Christian person who goes to Catholic church. I have been reading bible everyday. I feel I am more connected to God since that I begun to read daily verses and trying to understand what is written.

“What is going to happen with your vision? How do you feel?”

“There is no telling with RP, no one really knows. I know I am likely to lose my vision eventually. I suspect it would not be fully loss. I might be still able to see with whatever vision left at the end of my life. Hopefully so. I took Braille for seven years. Let me tell you, it was tough, yet typing was easier.”

“What are your biggest fears?”

“Fear of going totally blind and fear of being in an accident with my children. That was the main reason I stopped driving. Also, fear of not being able to read Braille. Also there is another fear which is unknown… the big question is WHEN would my vision change overnight? Is this a possibility? That’s my biggest fear: UNKNOWN.

 “Any challenging issues with parenting?”

“Yes! the children know I can’t hear or see well. Sometimes they would try to take advantage of that. They hide behind me knowing I can’t see them. They think it is fun and game specially when dad is not home and they get into trouble. Eventually they stopped doing this game because they know they definitely would get into big troubles. haha. Also I would put on my hearing aid when they yell at each other and they are shocked as how I know. I am used to have silence around me. The world “noises” is of no interest. I love to listen to music and sometimes wear my hearing aid to watch a movie.”

“I wonder what were some of limiting messages growing up like the person who told you about being totally blind at age 16. I imagine you seeing that person now in your mid forties with your radiant smile. It would be a reminder for adults being mindful with children.”

” I don’t remember who that person was, someone in the school. Yes, I did a field vision test a several years ago and my vision had not changed much since I was in elementary school. I am so grateful that my vision has not drastically change yet as much in my 40’s. knock on the wood.

 “What would be your message to our readers who maybe facing with many life stressors. What makes you shine like a Sun, given your life lessons?”

“I guess is to try to live your life at the fullest. You would never know what your day would turn out tomorrow. Sometimes I ask God to guide me with my life issues, other times turn to Bible, or consult with my family and friends.” You can live your life to what you would want for yourself. Also don’t let anyone tell you what you cannot do this and that. Only you know your own limitations. No one walks in your own shoes. Everyone is different.

Thank you for being a source of inspiration for me…

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6 thoughts on “Annamaria

  1. Dear Ellie,
    Very insightful and encouraging as to the strength of spirit and it also highlights the blessing of the benefit of having a supportive family from birth. For me while her life is blessed It also magnifies the challenges that such a person would have had being born into a family with limited personal resources and living in a school district that struggles to provide such needed services. Not all people are born equal in their home life or in their community environment. Also, it reveals that one can’t really predict the future, but it does make a point of the benefit of preparing to some degree for possible outcomes of one’s genetic make-up as was explored in her challenges with Braille.

    Thank you for your continued inspiration as to the power of the positive outcome of One Person providing the community such up lifting stories.
    Your friend,
    Jonathan

  2. Annamaria,
    What a beacon of light and love you are. Your story is an inspiring message to all of us. With or without “known” disabilities. We are all imperfect creatures in the perfect orderly nature. Brava to you for never giving up.You are like a flower who weathers the cold under the snow all winter and blooms in the spring. Your children will benefit from your strength and tenacity. I certainly did.

  3. Annamaria,
    Thank you for sharing your story with us. Challenges come in different ways. you are an inspiration to us all.

    Diana
    XOXOXO

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