Ellie’s story | How albinism drives my photography

So, how does someone who is formally trained in the sciences take up photography?  I mean, let’s be honest, science and art rarely mix.  For me, it happened with the birth of my second daughter, Ellie, who was born with albinism.

Perhaps you should go grab a tissue before I start, this story is intense.  

The story begins because we had trouble conceiving.  Once we did, I had a really tough pregnancy, but on March 5th 2010 Elliette May Leden was born. She was perfect! Well actually, she was jaundiced and looked slightly like an alien, but perfect! Her most remarkable feature was a head full of snow-white hair.

In the beginning of our time together, Ellie and I spent three days in the hospital.   During this time, I never saw her open her eyes. I even joked with the Dr. asking him if she had eyes. Right from the beginning, Ellie was unique. My nurse stopped checking our wristbands when she brought Ellie back to me because she said Ellie was the only baby in the hospital with white hair. No one had ever seen hair quite so white. On the second day of our hospital stay, my nurse said do you think she is Albino? “NO,” I said! After all, I was a toe head, Amelia (her big sister) was blonde and her Dad is also blonde. Clearly our genetics coded for a little “toe head.”

A couple days after we got home from the hospital, Ellie started opening her eyes, mostly in the evening after the sun had set. I was nursing her so I gazed at her often. Under incandescent light, the irises of her eyes were transparent and I could see the lens right through them. So, I did what anyone would do, and I began to Google. That is never really a good idea. When Ellie was seven days old, I went to the Dr. because I thought something was wrong with her eyes. She never tracked anything. My husband told me he thought she was blind. The Dr. assured me that everything was fine. She had a pronounced “red reflex,” but in all of his 30+ years of practice he had never seen albinism and was certain she was not Albino.

As a Mom, I think you just know when something is wrong, and something was wrong. I pushed harder and got an appointment at the University of Wisconsin, Madison. There was a Pediatric Ophthalmologist there who specialized in Albinism; I was going there for answers.

When the day of the appointment arrived, my Mom went with Ellie and I. We drove up towards Madison, and although I knew something was wrong, I was optimistic that the Dr. was going to tell me she did not have albinism. We got out of the car, loaded up the stroller and pushed Ellie in.  Inside, we were greeted by a friendly receptionist who said, “I see why you’re here.” Really? The receptionist knows? My local Dr. assured me she did not have Albinism. I was concerned, but she was just the receptionist, right?

Ellie was 21 days old when Dr. Struck walked in, introduced himself to us, looked at her eyes for less than a minute and then he said “yes, she has albinism.” You know, that moment in a movie when someone gets bad news and the outside of the screen becomes blurry, and the person receiving the news doesn’t hear anything else that is said? That’s about how it happens. I didn’t cry, but I wanted to. I held it together. In what seemed like the smallest room, I stared at the Dr.’s face thinking how I, in this moment receiving this news for the first time, had to be the worst part of his job. I don’t really remember much more until we walked out of the building. To keep my composure, Imade a point to walk in front of my Mom. I did not want to talk about it; I did not want to look at her. I wanted my moment. I put Ellie in the car and sat in the front seat staring out the window. She asked me if I was OK. I was not; I broke down and cried for what would be the first of many times. I was paralyzed, mourning actually. (I was morning the loss of a dream. Please do not judge me for saying I was in mourning, I was.  In short, individuals with albinism have “low vision.” Ellie may never drive, and in reality there are professions she will not be able to pursue as a result.) My child had a disability. I didn’t know what that meant for our future.

I of course had to tell my husband. Because I was unable to talk, I sent him a text that said Oculocutaneous albinism type 1A, I’ll call in a bit; I need to get myself together. This monumental day began my journey. It would change everything I thought I knew about love and life, and it would redefine the person I am today.

The next month was tough. I did not tell many people, mostly because I couldn’t talk about it. Each time I did, I had to mourn the loss of my ideal for this child all over again. I became very reclusive. At this point, I realized that I had a choice to make. I could stay behind closed doors and feel bad for myself, or I could embrace this and move forward. After all, it was only albinism! I contacted the National Organization for Albinism and Hypopigmentation (NOAH) and got connected with parents of children with Albinism. I had to learn what albinism was and what raising a child with albinism would mean for me.

Fast forward to today.   There are just a few accommodations I make for Ellie now. Her depth perception is not great, nor is her vision, although you wouldn’t know it if you watched her play. I tell her where stairs are, or when there is uneven ground, etc. It has been a wild ride to redefine what beautiful is, and really be humbled by such a young, amazing, able and crazy child!

Ellie is the motivation behind my photography. I am upholding my parental responsibility to make sure her memories are as beautiful in a photo as they are in real life.

I began my photography journey strictly with natural light. I didn’t want anything to do with flash.  When I used flash with Ellie, her pupil and iris were both red.  After mastering outdoor, natural light, I decided to learn studio lighting.  I am happy to say I’m quite versatile now!  I can even take photos of Ellie with a flash and there’s no red-eye, see below!  Take a minute to soak in her beauty!

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