Why We Advocate

Our newborn at two weeks old

Our newborn at two weeks old

The first Six months of Oliver’s life stand long and never-ending in my mind.  They were a torturous and fearful time.  From the moment my precious son was born we knew how different he was.  The reaction from the medical team set the pace for how many would treat us those first years. We had no idea that Albinism was a possibility and had no warning or preparation.

We knew absolutely nothing about albinism or what that might mean for our tiny newborn. The alarming thing was that the entire hospital didn’t seem to know either.  They took our son for hours at a time, affecting my ability to nurse him, and increasing our anxiety.  No one would answer our questions but often came in to ask us “are you sure you want him, do you understand what it means?”  One nurse even told us jokingly “your son is a big hit all the doctors are coming to visit him because they’ve never seen an albino before and they don’t want to miss this one.”  Not once did anyone consider that sweet boy was our son, an infant, and not part of the circus.

We felt harassed and on display. They asked increasingly invasive questions about our desire to keep him.  We desperately wanted to escape.  Leaving the hospital was probably the most blissful time of those early days.  We spent days bonding well hidden from the world.  I told you before what it was like to get the diagnosis.  But that was not our first run in with a bad doctor.  We changed pediatricians over the issues at the hospital and felt extra protective as a result.

A friend contacted me alarmed that she had seen photos of Oliver on a facebook hate page.  Someone had stolen pictures of our son through a friend on facebook and then used the pictures to display hate against albinism.  We reported the site immediately and waited weeks to watch it come down.  The fear was very real and our son was a big target.

We took him to the store to get more diapers and strangers called him “demon eyes” and “devil spawn.”  I cried awful tears in the middle of our local Target because no one could be nice to my baby.  Every fear I had for this boy played out over and over those first months.  Ollie had zero pigment in his eyes, hair, or skin.  This caused a constant reaction.

I could have calmly explained then what I am able to explain now.  But then it felt like too much to be kind to people that could be so cruel to a baby.  Our only coping mechanism then was to hide. I’d like to go back to myself then and tell me everything would be alright and I didn’t have to be so afraid.  I am telling you these stories because I hope that other mothers never have to feel that way.  No one should fear to leave their home with their child.  No one should feel that alone.

We advocate in the hope that those wrongs never happen again.  That maybe another family with a child with albinism will see this, reach out, and find an amazing family of support through The National Organization Of Albinism and Hypopigmentation.  We are not just vocal but we also volunteer to help in trainning other medical professionals.  We have participated in pride week for our local hospital in the hopes that having met him, maybe the next person they meet with albinism they will treat more kindly.

I’m sure most of those early reactions were not intended to be as cruel as they were.  Those doctors and strangers had no idea the effect they had on my family.  They couldn’t have known how much it hurt. We have come a long way since those early days and much of that is due to the adaptability and loving nature of Oliver.  It is hard to be fearful for a child that spreads joy and love around him.  Now that he can interact with people it is more often kind.  Those that are cruel whether intentionally or unintentionally have trouble answering to a 3 1/2 year old.

About Say Hawk

I am a mother of two, wife of over ten years. I am an advocate for my special needs son and a cheerleader for my family and friends. I don't believe in can't and desire to help everyone find a way to fight their N-E-V-E-R-S.
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