Skeletal Dysplasia

I am a little person. I have been a little person since birth and will be a little person for the remainder of my life. Over the past couple of years, it’s become increasingly more common for people (mostly outside of the dwarfism community but also sometimes within it) to say things to me like “but you’re not that little” or “I don’t see you as a little person.” After increasing frustration with these comments, it’s time for me to unpack them and spread a little dwarfism awareness. You see, I don’t have achondroplasia, the most common form of dwarfism. I therefore don’t look like I have achondroplasia… since I don’t (surprise surprise!). There are now more than 400 recognized forms of skeletal dysplasias, each with unique features and differing body proportions. Really the only feature shared among these conditions is short stature. The Little People of America defines dwarfism as a medical condition causing short stature, usually resulting in an adult height of no more than 4 feet, 10 inches.  At 4-foot-seven, with a diagnosis of spondyloepiphyseal dysplasia congenita, I clearly fit the bill. If you want to get technical about it, this adult height is less than three standard deviations below the mean — clearly outside the “norm.” I have been outside this “norm” since birth. Most little people are around 4 feet tall, and I recognize the fact that I am taller endows certain privileges. I can reach most (though still not all) items at grocery stores. I can usually be seen when standing at a tall counter-top (although not if I’m using my scooter). I can reach the showers at the gym. I can comfortably reach an ATM. However, these privileges do not negate the fact that I have dwarfism, that I face daily accessibility challenges related to my dwarfism and need to utilize adaptive equipment (pedal extensions and a tall booster to drive, a scooter to get around, stools in the kitchen, to name a few), and that I have dealt with ignorance and discrimination due to my dwarfism throughout my entire life. To say that I “don’t look like a little person” minimizes these lifelong experiences. Since I was a child, the world has categorized my body as “different.” These experiences have had a huge impact on my identity and my interactions with others, from children, to teachers, to doctors, to random strangers, all of whom feel the need to comment on my body’s differences, usually pointing out these differences are “weird” or “bad.” This is not the place to catalogue these experiences; additionally, I feel I shouldn’t need to “justify” my lived experience of dwarfism. But just as an example — walking to my car last week (several days before St. Patrick’s Day, wearing a green headband) — a man felt the need to call out to me that I was a “little leprechaun.” The discrimination and ignorance faced by people with dwarfism is not limited to people with achondroplasia, and pretending this is the case excludes many people who are fighting the same daily battles for acceptance and equality. The past several years have seen an explosion in reality TV shows about dwarfism.  While I applaud the awareness that some of these shows have brought, I do wonder if they might be contributing to society’s narrower view of what someone with dwarfism looks like. When I hear “you’re not that short” and “you don’t look like a little person,” I wonder where people are getting the information they think they need to make these judgments. Every new child I meet gives me a “look-over” and almost always says something along the lines of, “Wow you’re really short” — if children can tell without a doubt that I’m little, why is this so difficult for adults? Maybe because there is still the perception that to be a little person, to have a disabled body, is a “bad thing.” People think they are giving me a compliment when they say I “don’t look that different.” But let me be clear that my body’s visible differences — my stature, my proportions, my gait, my scars, my ribcage — are not a “bad thing.” My 4-foot-7 body with dwarfism is just as beautiful and flawed as a non-disabled body, and no less valuable. And it is just as much the body of a little person as someone who’s 4 feet tall and has achondroplasia. I am confident in my appearance and have no desire to change it, but pretending I “don’t look that different” invalidates the accessibility and social discrimination I have faced for 25 years. This attitude furthers the oppression of people with disabilities by playing into this idea that it’s good to “look normal.” Furthermore, no one has the right or the ability to judge another person’s lived experiences based on limited information and preconceived judgments, and it is ignorant and dangerous to assume you can. The next time you feel the need to question someone’s identity or lived experience of disability, please think twice about whether or not this is your call to make. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

This photograph means the world to me. This photograph is the first, the last and the only family photo that we have. It can never be replicated, and those emotions we depict can never be truly explained. Our son, Sebastian, is pictured with us. He was born sleeping at 20 weeks gestation. He was our firstborn, our much wanted and loved son. This photo was taken on the evening I delivered him in August 2015. He died from a lethal form of skeletal dysplasia, more specifically type 2 osteogenesis imperfecta. His body was so much smaller than a baby for his gestation; his legs were too short for me to even feel his first kicks. His skin and organs were underdeveloped and tore just from being touched. He was brought into the world with every bone in his body broken. His limbs were bowed as a result of constant fractures and healing within the womb. He was one very sick and weak boy. We had been warned a week earlier that he was expected to die in utero at any time, and while we found this news confronting and devastating to hear, we prepared ourselves for the long journey ahead of us. I am not sharing this story for you to feel sorry for us; I am sharing it to raise awareness about the men and women who walk among us in our community. The one in four Australian couples who also have their one and only family photo; the one in four women in Australia (according to a 2012 Sydney Morning Herald article) who experience a miscarriage or who deliver a still baby. These men and women are fighters. For every baby they hear cry in the café, for every baby they see in catalogs, for every pregnant woman they see waddle past them — a piece of their heart breaks. Whether it’s a reminder of the cries they never heard, the clothes they were never able to buy or for the gestational age they never arrived at, their heart aches. There are no words one can say to bereaving parents; nothing can take away the heartache that haunts them for the rest of their lives. The only thing you can do is join with them, help fight their battles and when it gets too hard, too sad and you think they should be over it — think about their first, second and third birthdays they will never get to celebrate. The only occasion they have to remember their baby with is the day they delivered their sleeping angel. It is far too easy to tell bereaving parents to “get over it” or “you can have another one,” but these words hurt. These words don’t acknowledge the loss that has been experienced, the years of infertility and the uncertainty as to whether future pregnancies are viable. Bereaved parents will never replace their angel baby; they want that baby. Ever since joining the team of bereaved parents, I’ve realized we are not alone in this, and that no mother, father or grandparents should ever have to be alone in this grief either. For too long this topic has been taboo, and bereaved parents have been forced to hide their emotions. By why? There is a lot I’ve learned from bereaved parents, and there is a lot that society can learn, too. Please remember, it’s OK to talk about the child who has died, celebrate their anniversaries and refer to them by their name (not “fetus,” as most medical professionals prefer). It’s OK to lift others up when they are down and be the shoulder for them to cry on. This is something I have experienced from complete strangers since losing Sebastian, and it’s been the most comforting thing I have ever experienced within my community. We know all too well that not everyone will be supportive, and not everyone will understand. This is why we can only share with you our family photo that has been edited, where our most prized creation had to be blurred. We’re afraid of how people will react; we’re too afraid of him becoming a focus of interest for people who have not seen a baby at that gestational age or with his physical deformities. We have done it to protect ourselves and our son. That is how taboo this topic is, and that is why I am speaking out this October. It’s the awareness month for two things close to our hearts that Sebastian was affected by – pregnancy and infant loss, as well as dwarfism (a form of skeletal dysplasia). So, to the moms and dads who have lost their baby, and to the grandparents who have lost their grandchild, you are not alone. Grieve in a way that gets you through it. The pain will not go away, but you will learn how to deal with it better. Be proud of your angel, the baby you wanted, loved and created. We must be brave and insist that people recognize our babies and say their names. Follow this journey on Words That Start With ‘S.’ The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

My daughter was born healthy at 8 pounds and grew and developed as any typical child. We never had an inkling until she was 2 that there was anything different or amiss about her body. We were sent into turmoil following an x-ray appointment after her 2-year well check-up. After visiting the genetics department at a big Chicago hospital, she was given a diagnosis of pseudoachondroplasia, a rare skeletal dysplasia. To say we were thrown off our rockers was an understatement. Our daughter, they explained, would be short in stature, have early and lifelong joint problems, bone deformities… the list seemed to go on forever. I scribbled notes on a pad, not understanding half of what I was writing. Not knowing the new life journey I was being sent on. I held my daughter each night and sobbed while singing her songs. She wiped my tears and told me not to cry. The days went on and the world turned, even though I didn’t feel like I was moving. Little did I know that as life went on, as I would make friends, connections and partners in this life journey; things would get easier. Over time, I realized that yes, my daughter would face challenges that I knew nothing about, but as her mom, I would help her face them. I would do all I can to help her overcome differences and help the world around her understand differences. It was now my life calling to help educate, inform and be more understanding and tolerant. I felt a new importance to my life, something that wasn’t there before. I slowly began looking at the world and people differently, feeling their pain and understanding them in a new way. I also learned I hated the word “normal” when talking about “healthy” children. All kids are normal — including my own. She may have pseudoachondroplasia, but that doesn’t define her. It’s just a tiny part of her. She’s one of the smartest, most compassionate and most aware 5-year-olds I know. She will learn to love and accept others in a way that others will never get the chance to learn. Our whole family will — our kids are being instilled with a lesson of love and compassion for the world around them. I am blessed beyond belief and lucky that she calls me mom. I’m thankful for her each and every day, and know that things will be OK. And not just OK, they will be great. Here’s what I think all new parents of children with skeletal dysplasias should know: 1. Every accomplishment — down to the smallest thing like learning how to step up a curb without help — will mean the world to you. You will feel a pride many other parents are not lucky enough to know. You will take nothing for granted, and celebrate every success of your child. Your highs might be higher and lows lower than others. Hold onto those highs and keep them close to your heart. 2. You will find many along a similar journey and many to support you, but all our journeys are unique. You will learn how you want to handle your own situations and how to teach your own child. I am not comfortable referring to my daughter as a “little person,” though so many with a form of dwarfism are OK with it. I choose not to label my daughter in any way, and I respect those who choose to use that term or others. You choose your journey and respect other journeys. 3. Your child’s diagnosis and this new journey you are on will make you a better person; this I promise you. I could not even see far enough down my black tunnel a few years ago to understand this, but I am learning. I have a long way to go, but I do know that in a few quick years I am a stronger, more tolerant, understanding, compassionate, giving and kind person than I ever was. I have a hard time believing the “I was given this child for a reason” scenario, but sometimes I do have to wonder if there’s some truth to it. 4. You will become ultra sensitive to all discussions/comments regarding size, whether it’s about being very tall or very short. People say things — lots of thing without even thinking twice — and you have to take it with a grain of salt. I’d spend my days sad and angry and hurt if I let everyone’s comments (not even about my daughter) get to me. Yes, they do sometimes, especially if coming from people I care about, but I do my best to move on. Know that most people don’t mean anything by it and you likely wouldn’t have thought twice about commenting on size or growth if you weren’t in this boat. Speak up when you choose to — pick your battles. 5. Read and take comfort in the famous “Welcome to Holland” story by Emily Perl Kingsley. I know it saved me in my darkest hour many times. It’s something many people will never be privy to if they are not given a reason to read it. I cannot recall who exactly sent it to me, but I do know I’ve read it time and again, and it is very special and so true. It takes time to believe. You will have many moments where you wish you had the trip to Italy, but in time you will understand that Holland really is much better. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .