Fully Grown
While my oldest daughter was growing up we attended Little People of America functions, though only one person in our family was short. We went to city and regional gatherings in Portland and Seattle, and made a vacation of the annual convention.
We participated in everything. There were excursions and talent shows and educational panels and medical clinics. Every night, there were dances and parties. In sports, my daughter ran track and my then-husband coached basketball teams. Sometimes, the tallest player was 3’10, but the teams played hard and played to win. We made many friends, short and tall, and watched people grow up, marry, and build families through birth, marriage, and adoption.
I wasn’t surprised, after my daughter was born, by my tremendous appetite for information. What took me by surprise was my hunger for engagement. Some tall parents of short kids can’t bear to see or interact with little people, at least not at first, but I couldn’t get enough of it. I found the types of dwarfism fascinating (there are over 400 last I checked). There are subtle-to-strong differences, and I studied them in the same way I studied my children’s eyes, hands, smiles, seeking myself, their father, my mother, or an aunt. With dwarfism, subtle similarities gave hints and clues. To me, it felt like sleuthing, but it probably verged right on the offensive, the way I observed and classified. I tried to keep it to myself.
My daughter has achondroplasia, a relatively common disorder of the cartilage. When babies are born, their skeletons are predominantly cartilage, especially in the long bones, face, and ribcage. In an average-sized baby, that cartilage turns to bone over time. When there is limited cartilage, limited bone forms. This causes the classic face of achondroplastic dwarfism.
That’s what I saw when I looked down at my newborn daughter and said, "The bridge of her nose goes in!" to which my then-husband said, "Well, so does mine." We had no idea. I find it a familiar and beautiful kind of face. I’ve seen it a lot, because eighty percent of little people have achondroplasia.
As a constant comparer who treasures details, I found enormous variety in LPA. I envied those who had hypochondroplasia, a "tall" dwarfism. My daughter’s best childhood friend has that, as did her late father, as do most of the para-Olympians who compete at the international level. Height is always an advantage in sports. I also saw a lot of psuedoachondroplasia. These people are on the small side of small, with very short limbs, but their faces are foxy, attractive, with sculpted cheekbones and a classical set to the nose.
People with Osteogenesis Imperfecta, otherwise known as Brittle Bone disease, grow in wildly differing bodily proportions, determined by damage to their growth plates. They might be tiny, with a look of haphazard assembly, or they might be just a little short. The prominent breastbone of Spondelodysplasia lends a confident air to those who have it, as if their tiny bodies are sailing into the sea of life prow-first.
Cartilage hair hypoplasia, a recessive gene condition that occurs most often in the Finnish, Italian, and Amish communities, makes a person small, fair, and delicate, with sparse hair to match. Diastrophic dwarfism is also recessive, and results in clubbed hands and feet. I knew three brothers in Portland who had it, all with a distinctive, twisting walk. The other pair of Portland brothers I knew walked with crutches.
There are many more types of dwarfism, but these are the most often seen at conventions. As a parent, I came to understand the relative good fortune of a common condition. Others are so rare that there might be only four or five people in the world with it. Parents with one of these exceptionally unusual children might come to the conventions looking for community, only to find their child a minority within a minority. That child might live a shortened life never meeting another person who shares their syndrome. This strikes me as incredibly lonely.
Despite my fevered curiosity, I didn’t ask little people what they had. I considered that rude, like the people who studied my dark-skinned biracial girls and asked, “What are they?” But with the other parents? Oh, we asked and answered, hungry for the common experience in all its pain, humor and detail.
LPA national conventions host medical experts from Johns Hopkins, who see patients at no charge. We came out of those consultations ready to share and compare what we’d learned from the experts. Parents short and tall self-educated on random genetic mutation, recessive genes, autosomal dominance, all the causes and heritability of our children’s conditions. We became medical experts out of necessity.
We also became experts in wide footwear, how to find and alter clothing, and how to find a hat that would fit your child’s large head. We understood the heartbreak of middle school, when burgeoning romances set your child aside from her peer group. We shared anxiety around learning to drive, and pooled information on modifications, pedal extensions, and insurance companies.
Whether or not we wanted to, we developed expertise in identifying the hurdles our kids had to clear to get out in the world and make it as adults. Some would have more medical challenges; some would have more emotional challenges. We want our kids to make it, to have a good life, and a long one. The most common cause of death in little people is pneumonia. The second most common cause of death is alcoholism.
The trick is to avoid both.
My daughter stopped wanting to participate in LPA when she was 16. I’d been warned that this was an adolescent possibility, the teen rebelling against the short part of her identity. We attended one last convention and never went back.
I miss all of it: the travel to new cities, reconnecting with friends from across the country, people watching, parties. I especially miss watching the fun and drama at the dances, where my own daughters reached out to include the rare, the fragile, the shy in joyful dance floor cliques. Most of all, I miss being in a place where my daughter’s condition is understood. At an LPA event, I never had to graciously explain how random genetic mutation caused a little person to pop up in family of very tall people.
Still, I have hope that I’ll someday go back. My adolescent is now a grown woman who says if her children are short, she’ll return to LPA as a parent. I’ll no doubt come along with my grandchildren.
Until then, I wait to be invited back into the world of Little People of America.
I work in one of the worst neighborhoods in Portland, Oregon. One winter day several years ago, I walked from my building to where I’d parked, wading through the human wreckage that washes up on the sidewalks of Old Town. I saw a young man, probably in his twenties, sitting on the sidewalk. It was cold, and he was tucked up against the wall tightly. It appeared that he had no arms or legs. What in the world, I thought, why is this person with no arms and legs sitting on the sidewalk in Old Town.
As I came nearer, he looked up at me. In that instant, I understood that he had dwarfism. His clothes weren’t altered, so his arms and legs were lost in his sleeves and pant legs. He was dark and beautiful, with high cheekbones, a long nose, dark eyes, a full beard, longish hair and olive skin. Perhaps he was Turkish or Iranian, that kind of handsome. We looked at each other. I said "hi" and he said "hi" back, so softly.
It was a long moment.
I step past the miserable every single day, morning and afternoon and often at lunch, as well. The tide of human misery never recedes from this terrible neighborhood, and I usually keep going. This time, I couldn’t move.
He is a grown man, my rational mind said, he is locked out of his apartment, or waiting for a friend, he is a man. My mother-mind said, he is three feet tall and sitting on the ground on one of the worst streets in Portland’s Old Town, in an area full of crack and meth dealers and he's stranded out here. Those can’t be his clothes, the jeans are too long, look how dirty they are, and he’s barefoot and he doesn't have a damn coat.
What was I going to do, demand to know why a grown man was waiting by a door without a coat just because he was a short grown man? What kind of overbearing, condescending creep would that have made me? Wasn't his dignity more important than my motherly urge to make sure someone who reminded me of my daughter was okay?
Finally, I made myself walk on.
I got in my car and drove away, haunted by his face. He was a grown man, I kept reminding myself, a grown man. The irony of that phrase hit me, grown man, grownup, fully grown, phrases we use even when the growing is so much less than average, because that’s how we measure maturity, through growth.
I didn’t know who he was or where he lived or why he was down there. There was help in Old Town, there were places to go to, cops who patrolled the area, homeless people who would have shown him where to go, more open hearts than mine to help. Or he could help himself, I insisted, he probably wanted to help himself, not have some middle-aged woman swoop in to fix things. He probably wanted to handle the situation, whatever it was, on his own, for the sake of his own dignity and self-determination. That particular argument made me feel like the Ayn Rand of Old Town.
He was in my thoughts all night. Eventually, I almost convinced myself it was okay that I’d left him there, that I hadn’t erred grievously. Almost.
I somehow expected him to still be sitting there on the sidewalk the next morning when I parked on the same block, and walked the same route to my office. I expected, or hoped, that he would be waiting for me so I could possibly--I don't know--do something. Mend my ways. Extend a hand to someone who needed help. Do the right thing.
Of course, he was gone.
Parents short and tall come to Little People of America to learn how to best prepare our kids for this world. But that is our part of it. Our kids need to select their own role models from the adults who attend, men and women with dwarfism who are strong, attractive, functional and happy. Short kids need to see people like themselves succeeding. They need living examples to understand that it can be done.
I’ve spent my daughter’s entire life telling her she can become whatever she chooses. I have reassured her that it might take longer, or look different from the path her tall sisters follow, but she is on her own path, and she can do it, I just keep telling her she can do it.
All along, I’ve been telling myself the same thing.
Like the young man on the sidewalk, my daughter is short and dark and beautiful. She is also educated and independent. She is married, she drives a car, has a dog, owns a home, makes a living in an extremely creative and competitive field. She is a grown woman, but she is still short.
When my daughter shops alone, she occasionally has to ask someone to reach something for her. Whoever she asks is delighted, and glad of the opportunity to help. At times, she feels like people follow her around, just hoping to be asked. But when my daughter wants help, she asks for it.
The young man on the sidewalk didn't.
I have excoriated myself over this for years, now. I left him there because I had to make a choice. I want to believe I made a choice that respected his autonomy, his dignity, but I fear that I chose on the side of my own ease, my continued ability to not get involved, to step over and around human suffering while heading off on my own path, which holds challenges enough. Certainly, I have told myself over the years, my responsibility is to my own complicated family, my own demanding life.
Maybe I was uncaring and selfish, walking away from that young man on the sidewalk, even though he was alone and lost. Maybe I made the easy choice. But it didn’t feel easy to me. It felt volcanic and agonizing, a war between the part of me that would have mothered my daughter into dependent oblivion just to keep her safe, and the part of me that insisted she could fly.
I stood there on that sidewalk that day, deciding what was more important, dependence or dignity. I will never know if I chose rightly.
-Karen Berry
Karen G. Berry lives, works and writes (for a living) in the suburbs of Portland, Oregon. She is interested in micro-societies, the heroic nature of everyday life, and expressing pain in the most humorous way possible. Her poetry has appeared in Hotpot, Farmgirl Press, Goblin Fruit, Weathervane, Fireweed, Seek It, Prairie Poetry, Subprimal, Panorama, and many other journals and anthologies. More information can be found at her blog, I Am Not a Pie. https://karengberry.mywriting.network/