History

Our First Year

My daughter Lyra was born on May 11th 2006. She had white, almost clear hair at birth. Even though our older two kids were born with dark hair, we weren’t terribly shocked since I had a brother and a niece who were both born with white hair. Albinism was suspected immediately by the doctors, but it wasn’t until 2 days after birth when she was examined by the Pediatric Ophthalmologist, that the diagnosis was confirmed. Lyra had Oculocutaneous Albinism. It was unbelievably hard to deal with at first. During the first couple of weeks, there was always that little bit of hope, that maybe they were all wrong. I had endless thoughts and questions racing through my mind, yet I didn’t want to tell anyone or talk about it. When we left the hospital, they gave us a packet of information about albinism. When we got home, I didn’t want my daughter to accidentally see it, so I hid it in the back of my closet. The stress was overwhelming. I wanted to scream every time someone would say “Wow, look at that white hair.” After a week or two of denial along with a serious case of postpartum depression, I finally accepted it… I had a sweet, beautiful, platinum blonde baby girl who couldn’t have been more perfect.

I immediately began researching. I wanted to know everything and anything about albinism. However, with more knowledge, came more pain. I kept receiving indefinite answers to most of my questions. There were too many maybes and what if’s. I thought maybe her visual acuity could be predicted based on the amount of pigment, but no such luck. Her PO (pediatric ophthalmologist) told us that there could be kids with less pigment that see better than those with more pigment and vice versa. Lyra’s future vision couldn’t be predicted by the severity of nystagmus, strabismus, or photophobia she had either. With so many factors to consider, it was impossible to know what her visual acuity would be. I just wanted numbers… numbers more specific than 20/60 to 20/2200. I hated not knowing the future. Would Lyra ever be able to read a book, or ride a bicycle, or see a shooting star? I had to force myself to focus on the now… how could I help her now… what is she doing now… what is she seeing now. If I wondered or asked questions about what she would see in 20 years or 5 years or even 6 months, I’d make myself sick with worry. I had to take it one day at a time, and focus on what matters most, loving and enjoying every moment with my child.

I discovered very quickly that most people were clueless as to the facts about albinism. They think of the stereotype “Albino” that they see on TV. A character that is made fun of or portrayed as weird or scary in many movies today. I would cringe when I heard the word albino. A lot of people are comfortable using the word and not offended when called albino, but I not. I don’t use the word in reference to Lyra and I will correct anyone who does. Person first language is being more widely used everyday. If someone asks me if she is an albino, I say “No. She is a baby and her name is Lyra. She just happens to have albinism.” She is special and unique because of who she is not because she has albinism. One thing that adds to this negative association I have with the word is that ironically, I was teased and called “albino” in middle school. I do have very light skin and I never jumped into the tanning beds like everyone else did back then, but I don’t have albinism. What do you call a child who has a hearing impairment, or autism, or a physical or developmental disability? You call him or her a person, not a disease. Labels that may have been acceptable decades ago such as mute, dumb, crippled, or retarded, are no longer used and are offensive to most.

I found that very few people know albinism is a genetic condition or that people with albinism have visual impairments. And then there were those people who THOUGHT they knew everything about albinism when really they new nothing but a bunch of myths. I got so sick of hearing the same questions and comments over and over again. One thing that upsets me, is when people say something like “Wow… are her eyes red?” NO!, her eyes are blue… but when a bright florescent light is glaring into her eyes… they look pink. I get very defensive on this issue. I try to explain that its the blood behind her eyes and you’re actually seeing through her eyes, but sometimes its just pointless. Some people just don’t get it… and others are just too blinded by the stereotype. One thing that has been helpful to some, is when I compare here eyes to a tinted window. If you take a blue tinted window, put a piece of red cloth behind it, and then shine a flashlight on it, the window is going to look pinkish, or purple, depending on the amount of blue tint in the window… but the window is still blue… just like Lyra’s eyes are still blue.

Some people I chose to educate and others I chose to ignore. There are only a few I’d like to smack… but I don’t.

We were fortunate that Lyra was diagnosed so early. She has had regular visits to her pediatric ophthalmologist since birth. At 3 months, her nystagmus, strabismus and photophobia were the primary issues. We were told she would eventually need strabismus surgery, but not how soon that might be. Dr. Grin said Lyra was beginning to show a little bit of farsightedness, but not enough to warrant glasses.

Lyra had her Functional vision evaluation through Early Intervention Services when she was 2½ months old. By 4 months we had completed her IFSP and Lyra began receiving services at home with a teacher of the visually impaired and an occupational therapist once a week. Through her EI, we were able to find out about a lot of great toys and books that would help promote her vision development. Its all about high contrast, lights, and textures. In addition to working on her vision and motor skills, we also began prebraille activities. We read books, encouraging tactile exploration of the various textures of touch & feel books. Troy and I have started learning the basics of braille, but we haven’t moved any further than our ABC’s. This is definitely something we plan to continue with Lyra and for us.

Many people have asked how we can tell what she can or can’t see. When we say legally blind, people often imagine complete darkness. They rarely consider the fact that like many, THEY might be legally blind without their glasses or contacts. Very early on, we knew she could see something… we just weren’t sure what. She seemed to look at toys, books, or objects that had very high contrast. We have a dark navy blue border along the top edge of the white walls in our bedroom. We would take Lyra in there, and she would look up at it and laugh hysterically. During the first few months she wouldn’t focus or fixate on anything specific, like faces. This was SOOOOO agonizing. I just wanted my baby to look at me, to see me… her mommy. This was one of the tough issues for me to deal with. I cried a lot. I thought she would never focus on my face. Finally, she did. At around 4 months, Lyra started really looking at me.

There are little things you don’t think of, skills that require vision. For example, how does a baby know to open her mouth for a spoonful of food? They see the spoon coming. In Lyra’s case, at 4 months, she couldn’t see the spoon coming. This made feeding her those first bites of solid food more difficult. We tried different sound cues to get her to open up. It didn’t consistently work though and eventually gave up. Maybe not the best decision on our part as parents, but we just decided to wait a bit longer for solid foods. Now Lyra can see the spoon coming and opens her mouth without any hesitation.

At around 6 months, we started to see Lyra’s right eye turning in more than the left eye so her pediatric ophthalmologist prescribed some patching to try and correct it. The patching was unsuccessful and soon both eyes were turning in equally and pretty much constantly. At her 8 month check-up, her strabismus surgery was scheduled. This was much sooner than I had expected. She was still so little. I was more worried about the general anesthetic than the actual surgery. On March 13th Lyra had bilateral strabismus surgery. Everything went very well. The surgery only took about 40 minutes and we were home before noon. It’s amazing what they can do with outpatient surgery these days. Lyra was playing with her toys and crawling around the house that afternoon. Her last check-up was a week after the surgery. Everything looked great. The photophobia was a big concern for us, and Dr. Grin said she would likely prescribe tinted glasses for the photophobia at her next appointment.

We were blessed to have such a great support network. Lyra’s regular pediatrician, her ophthalmologist, and her TVI all had experience with children who had albinism. All three of them referred us to NOAH which has been an invaluable resource. Months before I actually joined NOAH, I was frequently exploring and learning from their website and posting on the Albinism Online Community. The NOAH website is where I consistently found the answers to most of my questions.

When I finally joined, it was just unbelievable. The personal support of the rapid response committee was amazing and had an incredible affect on me as a mother. I was able to talk to other parents who really understood how I was feeling and what I was going through because they’d been there. Because of NOAH, I no longer have that constant uneasy feeling and anger and guilt. I think now I am… at peace… with everything. I have comfort and contentment through understanding. I am happy finally and I can enjoy Lyra just as I do my other children.

As much as Lyra has changed mine and my husband’s lives, she has also influenced her older sister and brother. My daughter Rebekah is 11 years old. Like me, she is a worrier. She wants to know everything she can about albinism and how it will affect Lyra. She wants to learn braille and about the anatomy of eye. If we can’t answer her questions, she’ll look it up. She worries about the future and about all of the what ifs that I’ve fought so hard not to worry about. She’s is protective of Lyra and wants to be able to answer other people’s questions. Dominick is 5 years old. He is laid back and untroubled, witty and random. Until recently he hasn’t really asked questions related to Lyra’s albinism. When she was born, we talked to him about it, but not in great detail. I’m sure everything has affected him and his behavior to some degree, but not in obvious ways. He’s just the type of person that doesn’t worry about things. He gets that from his daddy. The other day, Dominick noticed Lyra’s nystagmus. He was truly impressed by the “trick” that she could do with her eyes. He wished he could do it. He was so cute. He thought the eye twitching was a voluntary movement. I tried to tell him that Lyra wasn’t really doing anything, that her eyes did it on their own, but no way. He was convinced it was her cool trick and he was going to learn how to do it too.

Overall, our family life was really difficult in the beginning… trying to do things like we always used to. We were pretty much hermits that first summer. Lyra wouldn’t even open her eyes outside during the daytime, even in the shade or on a cloudy day. She cried if I tried to strap on sunglasses, wouldn’t leave a hat on, and I couldn’t put sunscreen on her because she was under 6 months old. It was too much frustration to bother going anywhere. It is not always easy to find shade. Changing, feeding, or dressing a baby under a blanket or umbrella can be extremely challenging. I didn’t mind staying home as much as my two older kids did. We tried to ease the cabin fever by going to indoor play places at children’s museums, malls, Chuck E. Cheese’s, etc.

For our windows at home, we bought these curtains called black-out liners that go behind your other curtains and block out nearly all of the light. It still wasn’t perfect. We’d catch sunlight peeking in various places throughout the day and were always adjusting the curtains.

The Forth of July was fun. Lyra really seemed to be watching the fireworks. We took her outside with us a lot at night. A friend once said to me… ”She’s not a vampire.” I know. And I know that her skin isn’t going to sizzle away the second sunlight hits it, but the bright light really bothered her. Lyra wouldn’t even open her eyes outside during the daytime, even in the shade or on a cloudy day. She cried if I tried to strap on sunglasses. Even spending 2 hours once a week under the bright florescent lights at church would irritate her eyes. Another frustrating issue was and still is with taking pictures. I refuse to take pictures of Lyra with a flash because of how red her eyes turn out. That’s not what I see when I look at her face to face. Her eyes are blue, and that is what I want people to see in pictures. I am getting better at taking pictures without the flash, but most of them still turn out blurry. I can’t take her to any of the chain portrait studios because they won’t adjust the lighting or not use the flash. I had my other two kids portraits taken 5 or 6 times just in their first year and I feel guilty that I haven’t done the same for Lyra. We’ve had to make adjustments in many of our behaviors and habits. Learning to put sunscreen on consistently has been a big pain. Only because I’ve been lazy and careless in the past. I have never been real consistent in putting sunscreen on my older two children or myself. If I had put sunscreen on them more regularly, it wouldn’t seem like I was constantly putting it on Lyra now. We all wear our sunglasses and hats more now and instead of going to family gatherings, carnivals and parks in the middle of the day, we plan our activities in the evening.

Lyra has changed all of us for the better. She has taught us patience, compassion, understanding, and respect. I can’t believe how quickly this past year has gone by, but what a difference a year can make. I have learned so much. Sometimes that learning was through tears and there were times I thought life would never get better. Knowledge is power, but I know sometimes with more knowledge comes more pain. I had to go through the tears to get to where I am now. I truly believe that God doesn’t give us more than we can handle. Lyra has made me a better mother and a better person. Now I know that albinism really isn’t THAT bad. For the most part, Lyra is just like any other 1 year old. I want her to be able to grow up that way. I know there is still so much more I will learn and it won’t always be easy. I will always be protective of her and even defensive at times, but never ashamed. God gave her to me for a reason, and it definitely wasn’t because I was the silent type. I am strong willed and outspoken and I will always be her best advocate. The only way to change society’s perceptions of albinism is through education. I am determined to educate everyone I possibly can, eliminating the ignorance and myths, so that Lyra can grow up with self-confidence, knowing that she is perfect just the way she is. From ignorance through understanding to acceptance.

 

14 Comments

  1. I would really like to meet with other parents with children with albinism.. I am scared , nervous, and possibly depressed.. Azylove210@gmail.com

  2. you daughter albino or not is very pretty 🙂

  3. Am very.happy with this story.I learnt a lot on it.am also an alBino and I always have the fear that I can’t work in public offices such as hospital and I can’t get a man that will love and accept me the way I am but today with. This story I believe that God has a purpose of creating me in such nature.Thank u!

  4. Hi there.

    My name is Donna. I am 28 years old, I live in South Africa and I have Albinism.

    it was so great to read your blog, I know my mother had her own stresses while raising me, especially since i was her first child and not much was known about Albinism at the time.

    I can honestly say that the thing my parents did best while raising me was to treat me as if i was a “normal” child. They took the usual precautions, sun glasses, suncream, etc, but i was never deprived of any experience.

    I have a younger brother, Martin who does not display any Albinism traits but could still be a carrier of the recessive gene. We have chatted about the possibility of him and his wife having children with Albinism and his answer is always “so what? you’re normal, what’s the big deal?” and i suppose he’s right.

    Growing up wasn’t always easy, yes, i was bullied at school, called “albino”, laughed at because i had to sit so close to the black board, etc, but i guess kids will be kids.

    I was a competitive showjumper in my teens, competing with (and often beating) able bodied people who never knew i had Albinism, I attended a regular school ( my mum always made sure that i was seated close to the black board, had enlarged print on exam papers and was given extra time to write an exam because i am a slower reader than most) but I graduated with exemption and went on to study veterinary nursing at Onderstepoort University.

    My eyesight is the biggest “problem” I have. It’s the thing that “holds me back” more than any of the other traits associated with Albinism. I still find it hard to accept the fact that I may never drive, and often feel deprived of the independence that it would give me, but I will never stop trying to find a way to get my licence.
    My Dad taught me how to drive when all of my friends were learning, because I wanted to and because I feel that it is important to know how to drive a car in case of an emergency. I may even drive better than some of my friends 🙂

    Computers are a minor problem sometimes. The size and font of text can be difficult to read. I have an Apple Mac and oh how it has made my life soooooo much easier because i can enlarge the print. the same goes for my phone, Apple is the way to go (I only have an iPhone because of the font size )

    My skin is very sensitive to the sun and living in SA doesn’t really help. I’ve found that re-application of suncream is key to not burning. I still burn sometimes, but I make sure to carry sun protection around at all times.

    When I was about 18, I wanted to “have eyebrows” ( I know it may sound silly) but I felt that having very blonde eyebrows, lashes and hair made me look “boring” if that makes sense.
    So off I went with my Mum to see what we could do. It turns out that getting colour into my hair is tricky, so I have to put peroxide onto it first ( brows and lashes included ) and then apply the colour. Now I dye my lashes and brows, as well as my hair, not to look more “normal” or to try and hide the fact that I have Albinism, but for the same reasons all women do it, to feel more attractive, to have fun and to do something different with my style.
    As for self tanning, I haven’t tried that yet and don’t know if I ever will.

    I really don’t see myself as different from any of my peers, in fact, i have accomplished more than most of my friends. I lived and worked in London for 4 years ( on my on ), have climbed Kilimanjaro, have a degree, competed in highly raked horse riding competitions and so much more. I can honestly say that all of this was possible because of my family and the fact that my parents never wrapped me up in cotton wool in an attempt to protect me from harm.

    I just want to say a huge thank you for your blog, I have told my Mum to write one herself because I feel that she has made me the independent and confident woman I am today.
    I’m sure that Lyra will say the same about you one day.

    Please feel free to email me or check out my Facebook page any time.

    Have a great week,

    Donna

  5. It was refreshing to read your story because I often feel overwhelmed and like no one around me understands or can feel my heart. I was 19 when I gave birth to my first child with albinism. I’m African American with a fair skinned, blonde, blue-eyed baby. In addition to the strange looks I got while our with my baby the doctor only said apply a lot of sunscreen. I noticed my babies eyes would light up red very early in his life and took him back to the doctor when I learned more of his condition. Questions from people could be so heartless and cold and sometimes I just wasn’t in the mood because I did not have answers myself. I gave birth to my second child in January 2009 and my third child in December 2009. My third child had albinism as well so we met with a geneticist and found that I was a carrier of two different albinism genes. Now I know more but a lot of questions are still unanswered. Like you I worried a lot in the beginning but now I am just trying to prepare them to be successful on their own. I just could understand your concerns and pains. I would like to thank your for writing your story because it is encouraging to me!

  6. I just want to say how great it was to read another mothers story . The diagnosis is shocking and was hard to truly believe in the beginning , but is now just apart of my life .. I was wondering if any of the mothers here had any issues with having to have genetics testing for hps or any of the of the other syndromes that go along with with albinism ?

  7. My friend has just had a beautiful baby girl who has been diagnosed with Albinism, I found your blog and have forwarded it on to her. I want to thank you for writing this blog and making other parents aware of the condition. x

  8. 🙂 My mother has albinism. It is so good to hear a parent is doing all this for a child with albinism… please do be viligent with that sunscreen. My mother has skin cancer now due to the years of her life they never put any protection on her skin (she was born in the 40s… I guess sunscreen just wasnt so much a thing then). She got burnt bad too many times… She’s also legally blind. Her family also didn’t really understand her condition too well I think. It all caused her a lot of problems later in life – like depression and anxiety. I do hope your little girl has a wonderful bright future. She can do anything anyone else can. I wish my mother would believe that about herself.

  9. I’m happy to read this blog may God bless u real good because reading it gives me some encouragement,my 2nd child is also an albino but the colour of her eye isn’t blue but brown ,I promise to stand firmly & defend her anywhere & know she’s going to do well,I’m indeed encourage by your blogMay bitterness be far away from you and oppression never rule over you in Jesus mighty name. Amen.

    Good morning this beautiful morning

    God bless u once again.

  10. Greeting, I truly understand your comments and concerns. I am the proud mother of a set of twins (boy and girl). After their births for hour into days I too searched for a reason why babies why me..
    My children are perfect… Just the way God intended them to be.. My children are now 7 1/2 years old some days are harder than others. But
    the love they give us back I wouldn’t or couldn’t imagine them without it.
    My nickname is Sunshine and Moonlight.. We need the both of them to tell their story and to educate others on albinism.

    BE BLESSED.. and BE A BLESSING TO SOMEONE ELSE

  11. I found your story very refreshing, albinism is so rare and to know that others experienced what I have as a mother to a child with albinism makes me feel so much better. I’ am a fair skinned African American woman, and my baby boy (whom is my second child has the condition) he’s blond haired with green eyes and really light skin. He’s absolutely beautiful to his father and I, but I’m just so worried about the opstacles he may face in school, it terrifies me to know that albinos are treated like monsters! People just don’t understand.

  12. Thank you for opening and sharing your story w us. My baby is 7 months old and you are right, God made them Perfect and He chose us as their parents. I feel proud of my baby and glad I am his mommy.

  13. Hi everybody, my Husband and i were blessed with a baby boy with albinism. at first he was shocked and asked in theathre were you cheating with a white guy. shocked as i was we both laughed. we really never had any stress we are young blessed parents and we love Fredricks so much. any parents with problems and challenges can write to us and we will be free to help. a wonderful experience yet a normal healthy son.

  14. Hi,

    You’re story is a beautiful one i have to say. My older sister is Albino and she found it difficult growing up, not due to other children but due to teacher’s etc. Although my parents tried everything and never ever gave up, the trachers at school failed her. She has since took it upon herself to create the life she really deserves. She worked her way through college, university and is now a nurse at our local hospital. I’m so proud of her but to be honest ive never seen her as different. Liek any child, if they are brought up to know who they are and know what they stand for, then they can do anything like in this world. Forget the haters, they are nothing at the end of the day. I think i was bullied more through school and thats because i have ginger hair!!

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