This is a picture of Franchesca taken in March, 1996, when she was the flower girl at my wedding.

First Meeting

When I was a very little girl, my parents didn't have access to support groups or networks of parents, conferences, etc. They had some input from a private early intervention program for a couple of years; and I later got into a resource program in public school. Things went generally well for me despite the lack of networking in my early years. My family settled in the Houston area during my school years; and this was a great move. I had access to the resource room; and eventually a nonprofit organization began holding recreational events for children twice a month. This was supportive for me; and my parents had passing encounters with a few other parents at these events.

When I was in high school, I learned that the local branch of the Texas Commission for the Blind was putting on events for parents of young children. I went in as a volunteer and took care of the little kids; and at later meetings I spoke as a panelist. I had plenty of experience with little children--I was 16 by the time TCB held the meeting for parents, and I had been volunteering in the church nursery since I was 12. Little blind children are not really any different from little sighted children. But there is something intriguing to a young blind person who has grown up among sighted people, knowing that she is blind, and then discovers there are others in the world who are like her...

And so, when I found little blind children, I experienced great internal delight. My life suddenly had purpose. I set myself to love them and to allow myself to be loved by them. In some cases, there was no chemistry. But in some cases, there was--just like in the nursery. And, just like in the nursery, I didn't build my relationships for "just a little while." I intended for them to be for good.

I don't suppose the TCB staff anticipated having blind caregivers any more than anyone else does. The children were all wearing nametags with print on them. One of my peers could read them; but she couldn't pronounce the name of the two-year-old girl who attached herself to me. "Patricia," she said. I had heard a staff person call her Franchesca, so I asked my friend to spell her name. Franchesca. As I played with her, her protective older sister approached me and asked suspiciously, "How do you know her name?"

The room was noisy, and these people were all strangers. I didn't really blame the little girl for her suspicion of me. I answered her question truthfully, "Because I heard Lori call her Franchesca." That seemed to be good enough, and her sister gave me whatever help or information I needed and introduced me to their mom, Angela, when the meeting was over.

Developing Friendship

I remained friends with Franchesca's family over the years. She struggled with developmental delays; and I rejoiced with her mother at every milestone she reached. Because her family lived across Houston and mine lived in a suburb on the southeast side of town, it was not easy for us to see each other often. We spoke on the phone regularly. There were a few times when I was able to be present for significant events; and these were moments I treasured. Franchesca graduated from her infant education program at age three; and I was able to attend the ceremony for the children. She had only recently begun walking with assistance, and the fact that she could walk for this occasion was very special to Angela and me.

When I went away to college, Franchesca had just turned four. During my trip home at Christmastime, she was very ill with a high fever. I had planned to spend a couple of days with her family but debated the wisdom of this plan in light of her illness. Angela and I decided that perhaps my visit would cheer her up. She had been lethargic and had not eaten in several days. Her mom picked me up, and we decided to pick up some lunch on the way home. I turned around, reached into the back seat, and put my hand in Franchesca's. "Hi, sweetheart," I said. At the touch of my hand and the sound of my voice, she perked up. She even ate a few French fries during the ride home. Her recovery was not instantaneous; but I knew that my decision had been the right one.

Franchesca did not begin to speak meaningfully until after her seventh birthday. I lost touch with her family for some time and had not followed her progress as she developed the ability to speak. When we reestablished contact, I was eager to see them and made arrangements to visit during one of my trips home from college in 1994. As I sat in the living room, talking with Angela, I was surprised to hear a loud, insistent call coming from the other room: "Mom!" I was even more surprised when Franchesca entered the room--she had grown up and was now about the size of an average five-year-old. She would continue to lag behind her peers physically; but she had a mind of her own and was determined to develop the ability to speak it, even if it took years.

In 1996, I had my own significant event; and it was Franchesca's turn to make a trip to share it. I got married, and she was my flower girl. My marriage did not last; but it remains meaningful to me that she shared in this event with me. It was a milestone for her in that she learned how to present herself in front of other people and how to share in someone else's special moment, how to stand patiently through an event where she was not the center of attention and how to appreciate the fact that she looked pretty and treat herself nicely. She needed prompting in order to do this; but she did it and I couldn't have been more proud of her.

Conversation

I had some contact with Fran's family for a year or so after my marriage, and then my own circumstances and failures pushed me out of contact again--this has been a repeating pattern over the years, but we have always managed to locate each other again. Those years after the wedding were important years because Fran began to learn how to express herself in many ways. She expressed her likes and dislikes, learned how to describe objects she used, and also learned to talk about her thoughts about her disabilities and people's reactions to her. She often asked to talk with me on the phone; and she expressed that she had a best friend at school, Alicia. I transcribed some snippets of a conversation we had on May 13, 1998, when she was 11 years old:

Note: In this conversation, Franchesca makes reference to talking loud at school. She tended to speak very softly at the time, and one of her goals was to speak louder. She also makes reference to sweeping her cane. The cane is designed to be moved back and forth in front of a blind person, thus providing tactual input about objects in front and just to either side of the body. Franchesca has poor fine motor skills and has had a great struggle with controlling the back-and-forth motion of the cane, generally being content to hold it straight in front of her.

Franchesca: Franchesca is my name. I play on my dizzy disk. It's at school.

Sarah: What's a dizzy disk?

Franchesca: It's a dizzy disk that you spin on and go around and around and around. I like to spin on it while I make it go.

Sarah: What else would you like to talk about?

Franchesca: I go to school at [insert name of school]. I am 11. I'm in sixth grade. I learn braille. (She proceeded to sing her ABC's.) I can count. (She counted to 20.)

Sarah: What else do you do at school?

Franchesca: I can talk loud at school. I can take a bubble bath at home. I spin on my dizzy disk at home. I live in [insert name] Apartments. I have two sisters. one named Christina and one named Kelly. Angela is my mommy. She snuggles with me. She tickles me. I tell her not to and she still tickles me. ... Mr. Bryan teaches me how to sweep with my cane.

Sarah: Why do you have to do that?

Franchesca: Because that's the technique.

I like music. I love Sarah. I like to take a bubble bath. When you go to bed, you lay down and go to sleep.

[Some time passed, and I talked with her mom for a while. ]

Franchesca: I'm frustrated.

Sarah: Why are you frustrated?

Franchesca: Because you can't understand me. I like you to talk to me. I eat sausage and eggs for breakfast. I eat eggs and toast. I make a turkey sandwich. I sleep in the bed.

[Some more time passed, and we had a repeat of some of the topics previously discussed.]

Franchesca: People stare at me. It makes me feel angry and sad. When people talk to me and don't stare at me it makes me feel good.

What Would You Do for a Peppermint?

In 2002, I visited Franchesca's family shortly before her sixteenth birthday. Franchesca had an intense fear of dogs at this time, and I had a dog guide with me. She had encountered one of my dog guides in the past; but this was the first time that I had taken a dog into her territory. It was a very traumatic experience for her, and she refused to come out of the back bedroom even though I had Meghan on tie down in the living room and assured her that Meghan was taking a nap and would not bother her. After spending a great deal of time in the back bedroom with her, I moved to the living room and suggested that she come out into the kitchen and have lunch with me. She walked into the hall a couple of times but retreated at the first sound of Meghan's collar when she roused to scratch an itch.

After a couple of hours, I dug a peppermint out of my purse, and this sound seemed quite intriguing to Franchesca. She asked what it was and whether she could have one. I said that she certainly could, but she would have to come out and get it. She didn't complain, but she didn't come. I went on about my business and was surprised about an hour later when someone showed up beside me and announced triumphantly, "You said I could have a peppermint!"

Franchesca's Wish<'h2>
I lost touch with her family again for several years, due in large part to the onset of very poorly controlled migraines and other things that caused me to fail to keep in good contact with my network of friends. I was blessed to be able to rebuild much of that network, including my friendship with Fran's family. Fran's repeated request from 2009 to 2010 was, "I need a Sarah privilege." She is quite understandable now, though she still receives speech therapy as well as braille and orientation and mobility. My hope was to celebrate her 24th birthday with her, though I had no idea how I would do it--my finances had not been conducive to doing this. But the 16-year-old kid was not so stupid. There is a lot locked up inside that little mind that has not found its way out yet. Fran follows the conversations that her mother and I have and makes eerily appropriate remarks at just the right times. And if she thought she needed "a Sarah privilege," I thought that perhaps we must trust her own knowledge of herself...

Franchesca's Surprise

I was amazingly blessed with the opportunity to make the trip to see her during her birthday week. I will do other things this week as well; but the first thing I will do is give Fran her Sarah privilege. She still worries about my dog--the current dog guide was Loretta. But she has begun asking how Loretta is doing instead of whether Loretta bites; and she had begun saying that it was all right if I bring Loretta to see her--but not the cats. Perhaps one day she will visit me with the cats and that will be all right. For now, we worked on Loretta.

Fran was very surprised to see me and proclaimed this "the best birthday ever." She still did not want Loretta anywhere near her; but she set her own boundaries very firmly. After she had made herself very clear, she sat on her bed and said, "Sometimes people can come in and talk to me, and that includes you." Despite the fact that she wasn't feeling well, she wanted to go out to lunch and have a girls' day out--complete with a trip to Bath and Bodyworks.

Notes from Mom

My youngest daughter, Franchesca, was born with anophthalmia. She was a full-term pregnancy with no complications. They discovered her eye problem after she was born when they couldn't put silver nitrate in her eyes. No one will ever understand what it's like to have a child born with a handicap unless you are that person. She is a very special little girl who has gone through so so much in her short little life. Through the years she's had numerous surgeries on her eyes, not to correct a problem but for the doctor to experiment different techniques upon her. When you have a child born with an abnormality, you try very hard in the beginning to do whatever you can to present your child as normal. I went through this stage. It's called denial. When you come to the point in your life where you accept your child as is, from that point on you and your child can go forth and conquer many things together.

It has not been easy raising a child with a handicap, let alone on your own as a single parent. I feel my faith in God and the friends who have supported me have helped make Franchesca what she is today: a special little girl with a disability. It took me a long time to get to this point, but she is a special little girl with a disability, not a disabled little girl. If you look at your child, or any child, with the idea of "I can" instead of "she cannot" you will go very far. My best advice to any parent is to love your child with all your heart and treat him with the best care and discipline you know how to give. Love never fails.

Links

The following links are places where I have found information that has helped me in learning about what Franchesca is going through. If your child has any of the conditions that she has, these may be helpful to you.

What is Anophthalmia?
This is a good brochure from the International Children's Anophthalmia Network explaining what anophthalmia and microphthalmia are and possible causes. Contact information for organizations providing services to people with micro/anophthalmia is included.

The Conformer
Here are some samples of the ICAN's newsletter.

Message board
Here is a Web-based message board for discussion of anophthalmia and microphthalmia and related issues.

Lens Microphthalmia Syndrome
This document from the National Organization for Rare Disorders explains the genetics of Lens Microphthalmia Syndrome and assiciated features.

Microphthalmos
This link from the Texas School for the Blind and Visually Impaired provides the text of Dr. Virginia Bishop's article on the impact of microphthalmia on a child's educational needs and appropriate modifications in the classroom.

Movements Online
This page provides information about orbital implants for people with anophthalmia or who have had an eye removed because of injury or damage from another eye condition.

Information and Diagnosis
This information from the Micro/Anophthalmic Children's Society (MACS) explains various types of micro/anophthalmia and related disorders.

Studies
This page presents the findings and progress of studies of the occurrence and causes of anophthalmia, microphthalmia, and coloboma in Scotland.

Stories
Here are stories of families who have children with micro/anophthalmia and how they have coped. One of the stories here provides great information for helping siblings cope with comments from others.

Franchesca has had a lot of difficulty with self-stimulation. Some of this she has overcome. In the blindness field, it is commonly believed that self-stimulation (also referred to as stereotyped behaviors, mannerisms, or blindisms) is the result of boredom or lack of sensory input. Fatigue and emotional upset may also be contributing factors. Below are some links related to self-stimulation and the teaching of leisure skills.

I have witnessed the struggle of this family to come to terms with having a blind child and with many other aspects of everyday life. I hope that they will share more, and I plan to keep this page updated regularly. Angela is willing to communicate with other parents of children with anophthalmia about her experiences. She is finally on line. If you wish to write to her, please drop her a line via me and I will pass it on. As soon as I have her permission to share her email address, I will change this link so that you can email her directly.

FRANCHESCA

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