If you are like most people you probably don’t think about your eyes often. I don’t mean all of the things your eyes do for you, I mean the existence of your eyes in general. Your eyes being in your face is a given for you. I am not someone who has had this luxury in my life.
When I was 1 year old I developed bilateral retinoblastoma. This is a cancer of the eye which develops in young children. When presented with all the treatment options my parents chose to have my eyes removed. This was a decision that I will always be grateful to them for making. I have been blessed to have been healthy ever since. My eyes though. How does one deal with a toddler who suddenly has a lack of eyes in her face?
My parents did what most parents would do. They had prosthetic eyes made for me. As I grew older I learned to take my eyes out and put them back in again. I also learned that my ability to remove and replace my eyes made me interesting! I drove my parents crazy by taking my eyes out and leaving them places they didn’t belong. I educated my Friends about the mysteries of the prosthetic eye. But somewhere along the way I developed a deep insecurity about my lack of eyes.
I have learned in my life that this world is a very visual place. If you look different, people are going to judge you differently. So I can respect the fact that my parents wanted to shelter me from a certain amount of that judgment. They taught me to never leave the house without my prosthetic eyes in. If I was sick, or suffering from a headache, or couldn’t find my prosthetic eyes, they made me wear dark sunglasses. They told me to never let anyone see me without my eyes in. They told me that I didn’t look good without my eyes in. They taught me to be ashamed of something I couldn’t change. I don’t believe this was the intention. I believe the intent was one, to stop me from losing my very expensive prosthetic eyes. Two, to save me from the judgments of an uneducated world.
In the last few years though, I’ve learned something else. It is a lot more healthy to be confident in who you are with or without eyes then it is to search for The acceptance of the whole world. I will never be exactly like everyone else. When I go out in public people stare at me! They stare at me if I had my eyes in or if I don’t! They stare at me because I use a cane. Because I’m blind! They stare at me because I have an interesting hairstyle. because I have tattoos and piercings. Whatever! I have learned that they are going to stare! There is no getting around that! But I’ve also learned that I have a safe place within my family. That when my husband or my step kids look at me they don’t see a girl with no eyes. They just see me! They except me with or without the prosthetics. And they never ask me to change. If I’m not in the mood to wear my eyes it doesn’t matter. I can just be myself and not worry that the people closest to me, who should always except me for exactly who I am, are judging me. It’s a very safe feeling.
When I read on social media about parents of children who are struggling with the same kind of cancer complaining about their child not wanting to wear their eyes, it makes me remember the little girl I was, and the young woman I became. I understand and respect the desire they have to keep their children safe from the judgment of others. I implore them to also teach those children that they are beautiful no matter what they decide to do with their eyes. Teach them that people will stare, people will ask questions, sometimes people will be mean! But that’s life. it’s far better for them to know they have a safe place in their parents arms than anything else. They need to know that they are perfect in their parents eyes, even though they no longer have perfect eyes of their own.
When I found her she was just a tiny thing. Not like a little baby, like something from a fairytale. She was alone. I wasn’t a child, not someone who floated away on delusional thoughts. I was 21 and finishing up my degree in english literature. I was a little obsessed with my weight then. I’d go running every morning in the park across from my apartment. That day was cold, freezing really, but i didn’t care. I ran every day, no matter what. I was in the middle of my third lap when my hair came falling around my face. I stopped to look for the hairband i lost. I saw the flash of color among the grass next to my feet. I bent to see what the flash of blue could possibly be. It was a basket. Not big, probably just a bit bigger than my hand. It was surprisingly heavy when I picked it up. I went straight home, not bothering to finish my run. I somehow knew I shouldn’t open the box outside. I opened the box on my kitchen table. Inside was a baby. There was no other word for what she was, she was undeniably a baby. She was wrapped in a pink blanket and a note was on the inside lid of the box. It wasn’t written in english or any other language I could read. She was sleeping. I felt the breaths move in and out as she dreamed. Her hair was blue. It was obviously not fake blue either, where ever this tiny baby was from, blue was a natural color for hair. That morning, Blue also became her name. I knew from the moment I saw what was in the box, that I was keeping her. I had no idea what I’d do with her when I was at school and work, I knew I couldn’t tell anyone about her. I didn’t even know what she was. When she started to cry, it was a shockingly human sound. I pulled her from the box and held her in 1 hand. She looked at me with her tiny blue eyes and smiled. She was beautiful. The first 2 years were a long list of secrets. My little sister was the only other living person who knew of Blue’s existence. She took care of her while I worked nights so my parents wouldn’t see my tiny baby and lose there minds. I knew Carley would keep everything to herself and take care of my baby girl. I told her the story of how I found my Blue and she never asked another question. The year she turned 2, Blue was 7 pounds and long enough to pass for a human new born. Her long blue hair was not the least bit human. When I decided I was going to pull her into the human world, I cut it all off. Carley was pissed when she saw the color of brown I dyed it. She screamed at me that I couldn’t put this baby in a normal daycare, I couldn’t even tell anyone there was a baby. I didn’t even know what she was, how could I take her to a doctor to get shots for school? I told her I couldn’t let her grow up all alone. I had a back up plan though. I told Carley if it didn’t work, we’d take the baby and go. Car would be 18 in 2 months so we could just go. She agreed to the plan only after I put this version of it to her. The 2 years I worked nights at a hotel I had also been getting my license in foster care. The morning I pretended to find my 2 year old daughter on the front porch of my house I was horrified. I only put her down once the doctors had to get her weight. I think now it was part of her magic that everything fell into place. There were only a few questions. Where did i find her? How long had she been there? They determined that she was 1 week old. Somehow they didn’t notice the fact that she had teeth. I don’t even know if the hair color would have really been necessary. No one asked anything. They let me take her home. From then on she grew more normally. She had been talking and walking for about a year by the time I took her in to the real world, so there was a little more pretending. By the time she was 5, she was testing at the level of a second grader in preschool, because she had lost the first 2 years. She was my sugar fairy. That’s what I called her. She drew pictures in the sand at the beach. She ran up to me every day after school and hugged me and told me how much she missed me. I held her close and sang her to sleep every night. She remembered everything from the first moment I opened the box, but not 1 thing from before. I wondered sometimes if some night when we were sleeping if some supernatural thing I couldn’t even imagine would be in my house taking my baby girl Blue. Other nights I wondered what she would grow up to be. What world had she been taken from, what was she missing, what couldn’t I give her? The year she turned 12 in reality, 10 to everyone but Car and I, I gave her the letter from the box. She held it in her hands and read. I could tell she was reading it, she was understanding it. “Mommy? Can I go see the place?” “I can’t read that baby girl. What does it say?” “Oh my God, you never read it? You don’t know?” “Know what? What don’t I know?” She was smiling even as tears fell down her beautiful face. “Mommy, it says if you took care of me while I was tiny I’d be safe. It says when I turn 12 i’m old enough to go back.” “Okay, where are we going?” She took my hand and walked outside. We were still in that apartment so the walk was only about 5 minutes. She stopped in the grass and just stood there. She put her hands into the air and took a deep breath. The trees to her left rippled slightly before the woman stepped out. She was a copy of my daughter, just looking wild. Her long blue hair was twisted and curly not like my baby girls straight smooth hair. The woman put her hands on my shoulders and hugged me. “I can never tell you what you’ve done for my family,” She said. “What are you?” It was the only way I could phrase what I was asking. What I’d been wondering for the last 12 years of my life. “I can’t explain it to you. But by keeping her safe, you have saved us.” “What does she have to do with the saving of anyone? She’s just a little girl.” Blue hadn’t moved from the spot in the grass. She simply watched us, her mothers, talk to each other. “She is not just anything. She’s the princess. She’s the hero we need. My people, her people, have been under attack for the last 2 hundred of your human years. We age differently as you probably noticed with your baby girl there.” “Why did you send her to me?” “When we have children, they are tiny. The box you found her in is where she would have spent the first 2 years of her life if she had been in our world. There were others who wouldn’t have let her live them. They would have found the box and taken her before she could save herself.” I didn’t care about anything but what this meant for her now. She had finally found her voice, and she was wondering what I was wondering. “What do I have to do?” She asked still standing in the grass. “Just stand there Blue.” The woman said. That same ripple happened, and my daughter disappeared. “What did you do to her? Where the hell is she? I need her. You can’t just take her.” I lay down in the grass and started crying, hard. “I’m so sorry I can’t give her back to you. You did well for her.” She took the place my daughter had been standing in before and rippled out of my life. I called Carley to come pick me up. I cried the story to her while she made 1 up for the cops. I spent the next 5 years pretending to look for her, while on the inside and to Car I broke for her. I couldn’t leave that apartment because I had to remember her. Had to go lay in that spot in the grass every day and pray to God I’d get to see her again. The day she turned 17 I got my wish. In the grass where I’d last seen my daughter standing there was a box.
Today I saw a post on twitter about a young woman who is blind being offered a braille menu for the first time in her life. The twitter post and subsequent BuzzFeed article made it seem like this absolutely normal moment was life changing for the young woman. At first it made me smile, that blindness was being discussed on social media. After a while though, it began to bother me quite a bit. I’m 24 years old and I have been blind for 23 of those years. I learned at a young age to ask for menus in braille. They aren’t always available, but in most chain restaurants they are. Because most of the general public isn’t used to interacting with those of us who don’t use our eyes to see, you have to ask for the braille version, but it’s always fun to be able to decide what you want for yourself. I myself, am a creature of habit. Once i find a food I like at any given restaurant I’ll usually just order that food because that’s what I want. The last time I was given a braille menu I used it for the purpose of showing my stepson what braille looked like in a book. I never saw something like a braille menu as anything more than I deserved. Maybe my opinion here is a product of the self confidence I’ve been actively fostering in myself over the past 2 years. But I believe the fact that what should have been seen as an ordinary moment in a young woman’s day became a news story says something very negative about how blind people are treated by the majority of the sighted public. If we as a Society are surprised and emotionally moved when blind people are simply treated like everyone else, what message does that send? From where I sit it screams that people who happen to not have eyes that work should feel very lucky when they are treated with common decency. They aren’t usually seen as full, capable, functioning members of the world, so when they are they should be extremely grateful. The sad part of this to me is that it becomes a vicious circle. Blind people are taught that they shouldn’t expect to be treated like everyone else. So they grow up not demanding the respect they should be given automatically. On the other side of this equation, the rest of the world is learning that they can, for the most part ignore blind people. When they do treat the blind like they are actually people too, they expect a parade for their goodness! I see this whole situation as just sad and wrong. I live my life demanding respect. If someone is genuinely kind to me I am thankful for that. But if I’m offered the same treatment as my sighted friends, I just call that a normal day. It shouldn’t be news worthy that a young woman who is blind was able to order dinner with the same ease as her sighted sister. Blind people need to become strong enough to take what they, as human beings in this world, deserve. And in return sighted people shouldn’t feel like saints when they do the minimum to include blind people in everyday life.https://twitter.com/buzzfeed/status/846786971385171968
I never pictured my life with a baby boy. In my head, there was always a little girl cuddled in my arms. And I did spend a lot of my life picturing that girl. No, I never pictured a little boy. That’s a good thing, because I never could have dreamed up this boy. He is energy. He is dancing around the living room, no matter how tired I may be. He is soft hair that always smells like sunshine, even in the winter time. He is long car trips singing anything we can think of. He is tiny fingers interlaced with mine. He is hugs and kisses all the time. He is pleases and thank yous. He is superheroes and Xbox games. “Harmony, do you remember Batman’s real name?” He is STILL teaching me these things! He is laughing so hard you can’t even breathe.He is light and thee absolute definition of love. And I am so incredibly blessed to be his Harmony.
There was never a time when I didn’t know I was adopted. There was no big sit down conversation about where I came from. One of my older brothers is also adopted so in my immediate family, being adopted isn’t even that special. When my brother and I were younger we’d compare our stories. I’d say, “Well at least you know who your father is.” To which he’d reply, “Well at least you’ve met your little sister.” We’d usually end up laughing at the end of this while our non adopted siblings looked on in confusion. With my parents and I there was always a disconnect around this issue. While my dad didn’t mind talking about it, he took the stand in our lives of if he didn’t need to know information, he didn’t. He always told me that the details surrounding my birth family wern’t known to him. From the time that I was very young my mom would get upset if I asked any questions about my birth mother. So as I got older I learned not to ask. The things I do know, that she was a teenager, an addict, a general wreck of a girl with a 2 year old daughter already when I was born i picked up by listening to the conversations of the adults and my older siblings. As a teenager I had a lot of anger for a woman who would give her baby away and not look back. I couldn’t understand how any drug or issue could be more important than your daughter. I couldn’t understand how she could have just walked away. As an adult I understand that 19 isn’t all that grown up. And that addictions can be very strong indeed. I understand that she did what she felt was best for her, and me. And I couldn’t see my life any other way. I couldn’t imagine a life with out my siblings and parents. I couldn’t imagine being anyone but who I am today and I owe my birth mother a thank you for making the choice she made for me 24 years ago. Accepting all of this for what it is, there is still this feeling I get every year around my birthday. I read a book once that theorized that children who are given up at birth equate their birthdays with their first sence of loss. I don’t know if I believe that, but I do know that I get this intense heartache feeling in the days leading up to my birthday. And my birth mother and little sister are constantly on my mind. I decided last year that I don’t have an interest in finding my birth mother. I don’t want answers, I’m not angry, I don’t want a new mom. And as curious as I am about my little sister, I’m not curious enough to actively look for her. Most of the time there is peace in having made all of these decisions. But for about a week every March there is just a lot of pain. The part of my heart that is still very much a little girl is just sad. She wonders how life turned out for those people she never new. She wonders too sometimes, if their ever wondering about her.
A couple of instances have occurred in the last week that have bothered me quite a lot. As a general rule people don’t speak to me directly. They address their questions or comments to whoever I happen to be with. People act as if my blindness has rendered me incapable of doing something as simple as ordering a coffee. Although this annoys me a great deal, most of the time I don’t go through the effort of correcting them. The exception to this is when I’m alone with my step_children. I’ve spent the last year trying to teach these kids that my blindness doesn’t have to keep me from living a productive, full and happy life. Letting people overlook me and speak to my 15 year old feels like accepting a kind of defeat. And in doing that, I would be showing her that I’m less of a person than I actually am. This weekend my stepdaughter and I went shopping for my wedding dress. The saleswoman who was helping us was one of the most frustrating people I’ve dealt with in a long while. Not only did she not speak to me directly, but according to my stepdaughter, she didn’t even look at me once during our hour and a half of working together. Every time she asked my stepdaughter a question about what style or color of dress I was looking for I’d jump in with my answer. Some people take this hint and stop the behavior and start talking to me as though I am an actual person who can talk and think just like they do. This woman however, was not one of those people who could be taught. When we finally left my stepdaughter was absolutely annoyed and I was incredibly frustrated with the way the experience had gone. This incident came to my mind immediately the next day when I opened the door to the pizza delivery guy. Now I should explain that the pizza delivery guy and I have a long term relationship. This particular delivery guy has been delivering pizza to my house at least twice a month since October. He is fully aware of my blindness. Every time he delivers my pizza he asks me to sign the receipt. I do sign it, just in my own way. I have been blind my entire life so I don’t know how to write many print letters. I learned how to write a somewhat messy H and thats what I use as my signature. For some reason the pizza delivery guy chose this weekend to become unsatisfied with my signature. After I opened the door and said hello he looked over my shoulder and asked my stepdaughter if she could sign the receipt for me. I may have slightly overreacted to this because of my frustration with the saleswoman the day before, but I didn’t feel like it was appropriate for him to address my daughter when I was standing right in front of him. He has seen me sign receipts at least 12 times. There was no reason for him to ask someone else to do it. The fact that he asked a child to do it seemed even more disrespectful to me. I less than politely told him that I could sign it and sent my stepdaughter to get her brother ready for dinner. I signed the receipt and forgot about the whole thing until tonight. I ordered pizza for dinner and the same delivery guy brought it. He handed me the pizza and left without even asking for a signature. After I closed the door I stood in the middle of my living room and laughed. These 2 episodes have made me realize something. As a blind person I have the responsibility of demanding the respect that sighted women my age are given without question. I have the responsibility to make people treat me the way I deserve to be treated. It isn’t fair, and it isn’t reasonable, but it’s absolutely true. If I don’t demand respect, I will be treated like a passive child. I won’t accept that in my life. I won’t teach my children that it’s okay to treat someone as though they don’t exist because they are different. I will continue to push the people I interact with to see me as a person with all of the same rights, opinions, and thoughts as them. If you encounter a person with a disability, try to remember that they are a person first. No matter how different the disability may make them look or even act, they deserve a certain level of respect just for being a member of the human race.
I’ve spent most of the last year and a half learning an acceptance for my body I’d never known before. I’ve let go of damaging patterns of behavior and negative self talk, to replace them with a confidence in who I am and how I look. In the process I’ve gained 40 pounds and 4 jean sizes. I’ve also gained the strength to not let that become a bad thing. I realized that I’m more content with myself at 160lbs than I ever was at 120lbs. I have never dieted like a normal person. There was never a time in my life when I looked at eating as simply a necessary part of being a human. Food was good or bad. If I ate food that I loved, which of course was all bad, then I was weak. I spent 14 years denying myself the foods I wanted and beating myself up when I would eat them. When I would exercise it was never purely so that I could feel healthier. I always had my weight in mind. When I decided to let all of this go, I did it completely. If I wanted pizza I’d eat an entire pizza. If I wanted chips I’d eat the whole bag. I ate what I wanted when I wanted and I didn’t feel guilty for it. While I know eating a whole pizza is in no way healthy, I absolutely believe it is better than starving and hating myself for eating. In the past few weeks though I’ve been wondering if I’m ready to find the middle ground. I decided that I’m finally ready to define healthy eating and exercising for myself. Last month I left my nanny job to work with my boyfriend working nights running a paper route. This means hours sitting in a car every night followed by a whole day of sleeping. As a result of this, my physical activity has decreased. I thought at first that my weight would shoot up. To my surprise this didn’t happen. I haven’t gained any weight at all. I have felt myself becoming more lethargic and lazy though. I’ve realized that I want to move my body more than I do. I want to exercise because I want to feel better. I want my body to feel stronger and more energized. This week I took the first step in my fitness journey. I ordered my very first workout CD from Blind Alive. This company makes accessible workout materials for blind people. I love this because it means I can truly be in control of this part of my healthy lifestyle. When I want to exercise I can just get up and do it. I don’t have to wait for someone to go to the gym with me. I don’t have to follow anyone else’s schedule. While preparing myself to start exercising in a healthy way I’ve also been more mindful of what I eat. I haven’t been restricting my diet, I’ve just been noticing what I’m eating and how much of it. I’ve been eating because i’m hungry instead of just because I’m bored. My definition of healthy may not look anything like anyone else’s. Maybe instead of a whole pizza I have 2 slices for dinner. I won’t feel like I failed if I have cinnamon toast crunch for breakfast. I don’t have to count calories or hit a certain number on the scale to feel like I’m doing well with my health. I’m very much looking forward to starting this new phase in my life. Thinking of food as fuel and exercise as a way to make my body strong is an entirely new idea to me, but it is one that I’m ready to imbrace fully.