Hey, everyone. I’m Willow, but call me Wil for short. I identify as non-binary, and what I’m gonna be talking about in this is my daily struggles with dwarfism.
I have a rare type of dwarfism called Spondyloepiphyseal dysplasia, or SED. Basically, I am always going to be way shorter than everyone else, and have other health issues, such as scoliosis, sleep apnea, and more.
I am currently 3’8 and 3/4, expected to grow only half an inch left. I am in middle school, so everyone else is already towering over me, and I am bullied constantly for it. My dwarfism isn’t genetic, so no one in my family really understands what I go through. I have a genetic mutation, an anomaly in my genetic code. It is a dominant gene, so yes, now that I have it, I do have the ability to pass it down to any children I may have.
With dwarfism, the primary struggle I face that isn’t the dwarfism itself would be my scoliosis. What that means is that my spine is bent, so I have to wear a back brace to try and correct it. I’ve worn a back brace for several years now, since I was about 6-8 years old. I am 13 now. However, when I first started with the brace, it was a night brace, meaning I only had to wear it at night, but as time progressed, it grew clear that a night brace alone wasn’t going to stop or correct my curve, so in order to avoid having surgery on my spine, I was switched to a day brace, that I must wear 21 hours a day. It’s not the most comfortable, but it’s better than the alternative of having surgery, so I’ll take it. However, my doctors have been saying that in 1-2 years, I may be able to switch back to a night brace.
My parents didn’t know I had dwarfism until I was already about nine weeks old. How could they? No one in our family had ever been known to have it before, and neither of them had it, so they had no reason to suspect. I was born in Mexico, and at first, the doctors thought I had some sort of disease, but as weeks wore by, it became clear that I didn’t, because the disease they thought I had is a curable one, and I clearly wasn’t being cured. So, after a few X-Rays and MRIs, they found out that I had dwarfism. The doctors told my parents that now that they knew I had it, they could do testing if they were to have another child, and abort it if the child had dwarfism, but they wondered what kind of message that would send to me, so they didn’t. That is how, two years later, I came to have my perfectly healthy little brother.
As time wore on, it was getting obvious about my delayed growth development. By preschool, I’d started to notice as well, seeing that all of the other kids were growing and I was not. One day, my mother told me that in the grocery store, I asked her why the other kids stared at me and pointed.
Other than that, my life was perfect, up until the point when, when I was four, I contracted a rare spinal disease. It had nothing to do with my dwarfism, so I was just unlucky to get it, and that is my first real memory.
I remember I’d gotten up in the middle of the night, needing to go to the bathroom, but I couldn’t walk. Somehow, I made it back to bed, and called my parents. The next thing I remember is going to the doctors in the morning, them calling an ambulance, and getting strapped into a stretcher to be taken to the hospital, where I spent five days, unable to eat or drink sufficiently because I threw up every time I tried. I still have some trauma from that, and, to this day, have a severe fear of needles.
As school for me progressed, I got teased and bullied a lot more. I felt I’d never belong, never be loved, until the third grade. A girl who’d previously been a bully to me slowly became one of my best friends, and we were inseparable. With her, another friend from first grade, and me, we were a mischievous trio who were inseparable. In fourth grade, we had the same teacher, and became even better friends. And in the third grade, I went to my first LPA (Little People of America) conference, where I met another great friend, also with dwarfism. She and I became inseparable as well, and were sad when we had to part for another year, as she lived in Hawaii and I lived in Virginia. The bullying scaled back as I started my transition to middle school, and now, in the seventh grade, I’m doing…. okay? I still struggle, but there’s more to me than meets the eye.
Dwarfism isn’t what it seems at first glance, and I have learned firsthand not to judge others with disabilities, as they are not what they seem. I am not a retard. I am not a midget. I am a person, with real feelings and real capabilities, and people who judge me without digging deeper are wrong. Everyone is a person, we all have feelings, we all have a story. And that is mine.
