“When we found out we were pregnant again in July 2017, we were surprised, but had no idea just how surprised we were going to be. I had felt ‘pregnant’ for about 2 weeks, but thought maybe I was just imagining things since two of our friends had just told us they were expecting. When we finally got the confirmation that we would be adding to our family in March 2018, that’s when the rest of the surprises began.
I expected it to be the same as my first pregnancy. I would crave some weird food, eat a bunch of it, gain 20 pounds, and have a beautiful baby at 40 weeks! I did start out craving food, but I couldn’t eat it! I couldn’t eat anything. I never gained any weight. I actually lost it. This was shocking for me, because I always thought when pregnant, you must gain weight. The doctors assured me it was completely fine and that the baby was still growing normally. I felt like a first-time mom with all the questions I kept going to the doctor with, considering all these things didn’t happen the first time around. I had no idea that pregnancy causes nosebleeds. I had pain in places that I didn’t even know could have pain.
At 20 weeks, we learned that our little bundle would be a girl! Again, another shocker. I was convinced the baby was a boy. The pregnancy had been polar opposites from my first by that point.
Sunday, March 4th, I woke up feeling well rested, which was a first. I got up and made breakfast for my family. We went out to the garage to spend some time together working on Demolition Derby cars. Normally I would have been exhausted, but I was perfectly fine. That evening, my water broke. Being a stubborn individual, I refused to go to the hospital. I kept telling Chris that we should just go to bed. I would be fine. The baby wasn’t due for another 2 weeks. He persuaded me to at least go to the hospital to let them check on the baby. I agreed. When we arrived and they admitted me, my nerves set in. I was going to have a baby. I didn’t have two weeks. She was coming very soon.
After 15 hours of labor, I was exhausted. I was completely drained. But I knew that I still had a job to do. Baby girl was coming. My nurse assured me that we would only have to push for 5 minutes. I put all of my faith in her. During pushing, my nurse, Lindsay, looked at me with a huge smile and said, ‘She has hair!’ I wasn’t surprised. Our first daughter was born with a head full of the darkest black hair I had ever seen in my life. I was so excited. Would this baby have red hair like me? Or dark hair like her sister?
The time finally came, and after one final push, my doctor lifted her up for her daddy and I to see her for the first time. Noralynn Kay was finally here! When he set her down, all I could do was yell, ‘Oh!’ Our baby had hair alright, a head full of hair — white as snow.
I looked at Chris and all I could say to him was, ‘She has white hair!’ I told him to go with her to the other side of the room while they cleaned her up. And that’s when all the thoughts started swarming in. ‘How did she get white hair? What caused white hair? Is our baby albino? How could she be albino? Is she okay?’ I kept shaking. The nurse told me it was probably just from labor, but I think it was my nerves because I was terrified of what could come from this.
Her hair became quite the topic for the hospital that day. Nurses were coming in just to see her. And then questions started coming from others. ‘Is she an albino? Where did the white hair come from? Were you white-headed as a baby? Is anyone in your family albino?’ I was completely unprepared for the amount of attention and questions we were receiving. And there was something about her being called albino by strangers that struck me the wrong way. Like they were isolating her. Like they were labeling her. Her pediatrician told us that all we could do was go see a genetic specialist. I became angry. I wanted to know. Was my child albino? What does albino even mean? Is she going to be okay? What health conditions come along with being albino? Why does no one have information for me now?’
Chris and I tried to deal with the questions as best as we could considering we had no idea what to expect, or if she had albinism. I was concerned about having to explain to our 5-year-old, Brooklynn, why her sister was different. But that should have been the least of my worries. It turns out, I didn’t have to tell her a thing. She told me that her sister was a snow fairy, and then she informed me that she was related to Elsa. I should have known that children see no differences.
Her first pediatrician appointment after coming home from the hospital, they informed us that they believed she had albinism and that we needed to see the specialist. The waiting period from then until the appointment was nerve-racking. Everywhere we went, people would want to see our baby, because who doesn’t love babies? And then the questions would come. They would ask Chris and me if she was albino. People would point, and stare. And we even had people yell across the grocery store to ‘look at the little albino.’ Of course, this upset us. We expected that type of behavior out of children but never from full grown adults. And then the day came where we saw the specialist. Chris held my hand the entire way to the office and just kept telling me no matter what, it would be okay.
He and I were nervous as could be sitting in the waiting room waiting to be called back. When we finally got back there, they began questioning family history, and drawing a family tree in front of us to try to pinpoint where this could have possibly come from. With neither of us having any family members that we know of that have albinism, we were completely confused. The genetic counselor explained to us that albinism is a recessive gene. Meaning, that both mother and father have to possess the gene in order for the baby to receive it. The other option is that the baby mutated the gene all on her own.
After she was done speaking with us, the specialist came in and looked over baby Nora. She examined her hair, her eyes, and her skin. Of course, she told us that she was a beautiful baby! And then she said the words, ‘I suspect albinism. We will need to do blood work to figure out which type she has.’
Immediately my heart began racing and I stared at Chris to give me some kind of answer. His eyes were locked on the doctor waiting for her to talk more about the types. The genetic counselor sat down in front of us and started to explain different things that come along with albinism. With Nora specifically, it is unlikely that she will ever have any other hair color other than white. It is possible she may gain some pigment, but unlikely. The same with her eyes. Her eyes will remain silver with glares of red, and it’s possible that they may gain little pigment, but unlikely. She will most likely need some type of corrective lenses, like glasses. We will forever have to lather her up in the highest SPF of sunscreen that we can find. There is a chance that she could have trouble with hearing. However, everything that the specialist mentioned was manageable. This entire time I was horrified over all things that could be managed. A weight was lifted off my shoulders. She is healthy, just different.
Now, we just have to deal with the public. How do you protect your children from the world being so cruel? How do we as parents make sure that our children do not grow up disliking themselves or things about themselves because they are different? At first, it was extremely difficult to deal with all of the attention we were receiving. We cannot go anywhere without people stopping and asking something in reference to her hair. Or asking to see the color of her eyes, or just asking straight out if she is albino. Now I just politely respond with, ‘She has albinism.’ Most people are just genuinely curious. That’s why I feel it is so important that we shine a light on the subject.
Before Noralynn, Chris and I had zero knowledge of albinism. We’re learning more and more every day. I’m slightly upset with myself, because I was so worried about the condition without knowing anything about it. But now I know, and everything is going to be okay. We’ve been given such a special little girl to raise and to grow with. Her father, sister, and I couldn’t be more blessed to have this wonderful little life of ours. She not only brings joy to everyone she meets, but to anyone who gets to see her unique features in photographs.
This is definitely going to be a different journey than we had planned for, but it’s going to be okay. Having albinism is okay. Being different is okay. Having Noralynn has opened my eyes in so many ways, learning to accept that everyone is different and unique in their own special way.”
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