When People Ask About My Son’s Dwarfism, This Is My Best Response

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Have you ever watched “Little People, Big World” or “The Little Couple”? The popularity of these programs demonstrates the public’s fascination with dwarfism. This rings true when I go out in public with my son, Samuel. People frequently ask about his diagnosis.

Dwarfism is defined as a person who has an adult height of 4 feet, 10 inches or shorter. There are an estimated 200 types of dwarfism. Most people are aware of this condition but know little else, giving rise to the curiosity.

Samuel’s dwarfism is not inherited but rather the fate of a random genetic mutation. His condition was through no fault of my own. Drinking soy milk while I was pregnant didn’t cause it. Falling heavily and landing on my knees didn’t cause it. I’d also venture to say that my advanced maternal age (or my husband’s age) didn’t cause it, although some theories on the Internet state otherwise.

I receive messages from people worldwide about thanatophoric dwarfism (TD, also referred to as thanatophoric dysplasia), which is what my son has. One dear lady whose child had TD believed for months it was her fault. My heart broke for her. She experienced great relief when I shared the truth with her.

The mutation causing thanatophoric dysplasia dwarfism is described as “lethal.” This diagnosis was discovered in 1967 by Pierre Maroteaux and his coworkers; they used the Greek term “thanatophoric,” which means “death-bringing.” At 9 years old, my son’s young life has already defied the odds. He is my little miracle Mann.

Samuel’s rib cage is so small it fits in the palm of my hand. He is 25 inches long and weighs 22 pounds. His short arms and legs, portly belly and trident hands are as soft as a baby’s skin. His flat button nose is utterly kissable.

The primary concern at birth was his inability to breathe. And though he needed a ventilator, we were blessed to bring him home after six months. Several years later, to my great surprise, he no longer needs a ventilator to breathe.

My son’s life expectancy is a bit of a mystery, which I believe is determined more by the miracle of his life rather than by what a textbook states. I’ve had the blessing of meeting other TD families who have blazed a path to hang my hopes on. The oldest survivor I know lived to be 26 years old. Will my son exceed this threshold? My momma’s heart says yes. But I believe only God knows.

As we meet people and are asked questions like, “Who is Samuel?” how do I respond? I can offer statistics like the occurrence of TD being 1 in 20,000 to 50,000 newborns or throw around Greek words and definitions, but I’d say the answer is in his smile. “Here I am,” his smile suggests. “Watch me thrive.”

A version of this post originally appeared on A Miracle in My Living Room.

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Why We Weighed Our Baby in Grams During Her First 18 Months

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When you’re pregnant, you have amazing dreams about your roly-poly baby with cute baby fat rolls and chubby cheeks. But when reality sets in, those dreams change.

Bella was born tiny. In fact, she was one of the smallest babies on the neonatal intensive care unit floor. When you’re in the NICU and have a baby who is growing unbelievably slowly, ounces can seem like mountains. So you hope for grams. That was the unit of measurement we used to weigh Bella during the first 18 months of her life. A gram is about the weight of a paper clip. 

We were ecstatic when Bella gained 10 grams in a week, while other parents got upset if their baby didn’t gain a pound in a month. Trips to the pediatrician were uncomfortable and odd. Other moms sitting there got upset because they thought their 3-month-old babies seemed small at 12 pounds. They would me ask how many weeks my baby was. I told them Bella was 9 months old and weighed 6 pounds. The looks I would get made me laugh.

You know you’re in a very special group when you need to continue to weigh your baby in grams after you leave the NICU. There aren’t many of us. Most people use ounces and pounds before they leave the NICU. Staying in grams doesn’t mean anything bad, it just means you get to keep that little baby a bit longer. No one should feel singled out for it.

When we decided at 18 months to start using ounces and pounds to weigh Bella, it seemed weird. Learning to convert became a new skill for us.

Bella has reached a point now where until she fluctuates within a few ounces most of the time. This is fine with us and her doctors. She is healthy and proportional for her size, so everyone is happy.

A version of this post originally appeared on Our Tiny Fighter.

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When My Kid’s 3 Words Revealed More About My Mistake Than Her Autism

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There I was, sitting at my son’s baseball game, watching my 7-year-old daughter dig through the grass with purpose. She was picking through small white flowers, her face inches from the ground, inspecting each one carefully, crawling, digging and leaving behind any that were not the exact shade she had set her mind on. This process comforted her, serving as a distraction from the noise of the game and the constant, yet unpredictable, screams from the crowd. I looked from side to side to see who was watching. How long would it be before someone pointed out her odd behaviors?

“Chloe, get up please.”

No answer. She was too deep within her own self-protection. But instead of seeing this as a strength, I slid down in my seat and gave into my own weaknesses, reaching for my phone to distract myself.

I thumbed through Facebook, not really reading anything in particular. The faster she dug through the grass, the faster I thumbed my screen, mimicking her panicked motion. What was easing her fear was feeding into mine, and just as I caught myself brimming with anxiety, a title on my news feed caught my attention: “Autistic Kids Need to be Able to Talk About Disability.” I stared at it for a few moments, indecisive if I needed to open it. I mean, as her parent, her well-educated parent, I knew all about this, right? Her father is a public school teacher. I have college education in psychology. Clearly we allowed her to talk about her autism. Squeamishly slouching in my chair, hiding while my daughter quietly comforted herself, I realized, maybe not.

Two paragraphs in and I know I’m in trouble. I have already begun analyzing all of my interactions with my child, and I am failing miserably by my own interpretation. In all of my attempts to try to teach her to not self-pity or use her autism as an excuse, I had avoided the topic of autism being a disability at all, reducing it to a brain that just “thinks a little differently.” The question was, why? The answer was going to take a lot more soul searching to figure out.

Our family is no stranger to disability. With two other children with a neuromuscular disease that limits their organ functions and often times mobility, we are well versed to the wheelchair “stares” and the leg brace questions, and we are perfectly comfortable hanging our little blue wheelchair friend from the van mirror. But why is it so different for me to refer to our daughter’s autism as a disability, and why had I not even thought of it until now?

I continue to read as Chloe continues to search for her perfect little white flowers. When I reach a list of things that parents need to help their children with autism understand about themselves, my stomach begins to churn. Unfortunately, it was much more than indigestion from the nachos from the concession stand. It finally comes flooding in that while I knew all of these things about autism, I truly have not accepted that any of them belong to my daughter. How could it be that all of those years ago I was not shocked by her diagnoses, but still have not come to accept it? How could I defend her diagnosis to others, but still not believe it myself?  How could I treat her autism like something we needed to overcome, instead of teaching her to accept her autism as a disability and embrace the life she was given? It was not a good feeling, but served as a much-needed wake-up call.

I slipped my phone back into my pocket and sat back up straight. I laid my eyes back on my little girl, for the first time in a long time seeing her. I wanted to scoop her up and hold her tight. But I knew that wasn’t what she needed. It was what I needed. That was the first thing that needed to change in our relationship. We were going to hit the reset button right there and then, and it was going to start with me. I closed my eyes and took a deep breath, releasing as much guilt as I possibly could, knowing that harboring it was not going to do us any good. When I opened my eyes she was standing before me, a fist full of white flowers, waiting for me to take them.

“For you, Mommy.”

My eyes welled up with tears. How many other things had I ruined by not being able to accept her autism? To think, something I so passionately wanted to stop, thought I needed to stop, became something so beautiful. 

A version of this post originally appeared on What Do You Do, Dear? 

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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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3 Things That Happen When You Date Me and My Disability

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It’s not always easy being the man in my life. I’m sure every woman can say that with some modicum of truth. I am no different.

But I can say that dating me, a person with an obvious physical disability, is sometimes an adventure in ways that dating someone else might not be.

1. Strange people might follow us.

I am often approached by people who are homeless, random people on the street who take an unsolicited interest in my life, or the occasional passerby. This phenomenon generally occurs for one of two reasons:

a) The person wants to tell me how inspirational I am or tell us how inspirational we are. This happens everywhere. At the movies. At the grocery store. Stepping outside my front door.

And the “inspirational status” won’t just apply to me. Once strangers ascertain the fact that we are together, they’ll let you know how wonderful you are, too.

“Oh, you’re such a good person,” they’ll say. Or, “You’re so wonderful for helping her.” Chances are, at the time they say this, you won’t be doing anything particularly wonderful or helpful or good, but strangers will want to give you an extra gold star just for hanging around me.

(I’m not saying you wouldn’t deserve one, but I’m saying it would be more for putting up with my sometimes irrational thought processes and enduring watching “The Bachelor” on Mondays than it would for carrying my coffee or getting my arm braces out of the car.)

b) The second type of concerned passerby will approach us trying to help. They might give us unsolicited advice on the simplest things — things we’ve done many times before — like getting groceries into or out of the car, going up steps or walking in the rain. They will want to offer their assistance.

This type of approach bothers me much less because these people are just trying to be helpful, to do something good for their fellow man.

However, these interactions can be a bit intrusive and stalkerish at times. Case and point: I went to Starbucks last week with a friend. I got my order and tucked it in the front pocket of my bag with a straw as we headed to the car. A man followed us outside from the store, almost to our car, and asked my friend, “Where’s her order?” He had not seen me pick it up, I guess, and was concerned that he didn’t see her carrying it out.

I told him, “I have it right here,” and pointed to the cup in my bag. He never addressed me, and he left.

2. Which brings me to my next point: People will talk to you to address me.

They will ask you what I want to eat at a restaurant. They will hand my purchases to you. They will treat you as though you are speaking for me. They will often assume you are my brother, personal caregiver, cousin, assistant, whatever.

Sometimes this is frustrating for me. Sometimes it will be frustrating for you. But try to stay calm. These types of people are clearly ignorant… because if they can’t see why someone would want to hang around me for more than a paycheck, they are missing out.

Of course, you should also be aware that if you show me any type of affection in front of one of these people, they will gawk. According to their assumptions, people with disabilities don’t date. We aren’t sexy. We don’t get married. And we can’t have families. You’ll be debunking myths every day, just by your decision to be with me.

(Hey, maybe I should give you a gold star.)

3. I’m a person with a disability. I’m proud of it, it’s a part of my culture, and I want us to share that.

Be aware of this fact. It is not something I want to change. It is not something you need to make allowances for. It is beautiful and natural, and a part of me that has helped me build many of the personality traits and characteristics that I love about myself. It is a part of me that follows me everywhere: to work, at home, out on the town, etc. You may find yourself introduced to new ways of thinking because of it, such as:

  • People-first language.
  • Crappy para-transit services.
  • Incessant planning for extended travel.

My disability pride is a part of me I want to share with you. I want you to be proud of it too because it is part of my culture, and if you are with me, it will become a part of yours.

Be prepared to listen to my rants about inadequate housing, employment discrimination, rights of parents with disabilities, inaccessible buildings, ignorant people at work, websites that blind people can’t use, the whole Netflix debacle, whatever. These are things that are important to me. They are a part of my fight for civil rights. For mine. For yours. For ours.

But even though I am a passionate advocate, I will also be your girlfriend. The girl who loves lazy Saturdays, cooking for you, sending packages, church on Sundays, coffee, Mexican food, chihuahuas, the French language and music.

The girl who thinks morbid thoughts at night, who is so concerned about your well being that she sometimes sounds like a mother, who will make sure she tells you every day how important you are.

The girl who does what she says she’s going to do, says what she means to say (except in cases of extreme hyperbole) and always, always, always loves you with her whole heart.

Yes, it’s not easy being with me. But I’m 100 percent worth it.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Going to College With a Rare Neurological Condition Made Me Stronger

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There are years I feel like I will never get back. I slacked off in high school, never put myself out there to get a job, make new friends or volunteer and wasted too many years after high school before finally going to college.

But there was a reason. I have a rare neurological condition called Moebius syndrome. Never heard of it? Don’t fret! Most people have not. I am somewhat of a medical mystery, even to doctors. I can’t count how many times I have gone to new doctors, only to have them tell me that they’ve never heard of Moebius and ask what it is and how it affects me.

Moebius mostly affects my speech. It causes facial paralysis, among many other things, and because half of my tongue is paralyzed I can be hard to understand sometimes. While I’ve (kind of) learned how to deal with it, it’s still extremely hard to hear the words, “Sorry, I didn’t understand you,“ or get that dreaded “blank look” when someone can’t make out what I’ve said. 

Despite all of this, in early 2013, I applied to the journalism program at the Southern Alberta Institute of Technology. On March 11, 2013, I received my acceptance letter. That is the day that my life changed forever. Going to college and applying to a journalism program was single-handedly the best decision I have ever made.

I won’t deny that it was scary or that my first semester was really hard. I struggled to make friends, and I was too afraid to talk to my teachers, nervous that they wouldn’t understand me. Or even worse, that they would ask themselves, why is that girl even here? Journalism is about communicating with people and verbal communication is clearly not my strong point.

But I could not have been more wrong. Many times over the past two years, teachers have told me I’m going to do great things and that I’m an inspiration to many. But most importantly, they’ve told that I will be someone who makes it in the journalism world. These teachers were the reason I made it through two years of college and I can’t express enough how amazing they were, and still are. The support was unending, and even now I can go to them for help. They all deserve some kind of award for being absolutely incredible human beings.

My classmates were equally as amazing, helping me organize an awareness event at my school on Moebius Syndrome Awareness Day this past January. I have met some lifelong friends in the journalism program and I know that we will always stay in touch.

I never thought that I would be able to make it through college and succeed at something, but I did. I did succeed, and it has shown me that whether I have Moebius syndrome or not, with enough perseverance and strength, I can make it through anything.

Soon, I’ll be graduating with a 3.7 GPA and in two years, I will have my Bachelor of Communication. But my grades aren’t the most important thing. The most important thing is that I did something that I never thought that I could do, met amazing people along the way, learned so much and enjoyed every single second of it. I finally found myself and who I am meant to be.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Secret Way I Get My Son With Special Needs to Brush His Teeth

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My 5-year-old son, Eli, is low verbal and has moderate-severe autism. I’ve heard from many other parents of kids with special needs who say that getting them to brush their teeth is a real challenge. Just six months ago, I was one of those parents. I tried giving him a toothbrush with his favorite character on it, another one that played music, even an electric toothbrush and yummy tasting toothpaste. I even tried no toothpaste. Nothing worked. So I usually ended up chasing him around the house to try to get a few brush strokes in.

After we moved from Florida to Washington, we had to start over on setting up therapy sessions for him, which meant a lot of wait lists. When he finally was able to start occupational therapy, I expressed my concerns with his therapist about his teeth brushing. She told me to bring his toothbrush in the next week to see if she could help.

I was skeptical, because I thought I had tried everything. We all went into the bathroom, he stood on the step stool by the sink and she started singing, “This is the way we brush our teeth, brush our teeth, brush our teeth, this is the way we brush our teeth, brush our teeth.” Amazingly, it worked. He brushed his teeth. I was shocked. He started to get annoyed and said he was “all done,” but she told him she was going to sing the song two more times, then he would be done. And he actually complied.

Eli during his first visit at the dentist.

So I figured I’d give it shot at home. Honestly, I thought for sure he let his therapist brush his teeth, but there was no way he was going to let me. Boy was I wrong. I started off by singing the song just three times like his therapist did, and then I would sing it more and more each week. We’re now up to singing the song 10 times, which adds up to two minutes of brushing twice a day. His teeth sparkle.

Teeth brushing wasn’t our only issue. He hates having his hair washed and conditioned. He would scream, cry, hit and push my hands away. I wash his hair every other day to every couple of days and would always dread it. Until about a month ago, it dawned on me that maybe I should use the song. So when hair washing day came, I started singing, “This is the way we wash our hair, wash our hair, wash our hair.” I told him I would sing the song three times. And he stood there and let me do it. I was ecstatic. I did the same thing for conditioning and replaced “wash” with “condition.”

So there’s my secret. A simple song. I’m not sure if he likes the song or the fact that I tell him how many times I’ll sing it, so he knows when it will be over. Maybe both. But I’m one happy mama.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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