5 Secrets of Being a Special Needs Mom That Make Me Thankful

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I’m sitting next to my son, Samuel, who is snuggly secure in his car seat. He leans to the left as I sneak a kiss on his cheek. He smiles and leans back. I pucker again, and he leans toward me for another kiss. I oblige and am rewarded with another brilliant smile.

We play the game until we arrive home.

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As I unbuckle him from the car seat, I’m still smiling. These are the moments that bring me great joy. As parents, I imagine we all have those precious cherished times we tuck in our heart.

I often hear others say they could never do what I do. The thought of raising a child with special needs can be seen by some as a herculean task beyond what a normal person can bear. I’m often commended for my role as a special needs mom, but here are a few secrets I’d like to share.

Secret #1: You get used to the world of medical equipment.

Living with a child who needs a ventilator requires an understanding into the world of medicine most of us don’t encounter. We learned to change Samuel’s trach, suction, give manual ventilation if needed and became proficient in all the emergency equipment required. You get used to it. The world of medical equipment and using it to keep your child well becomes second hand. This is our new normal.

Secret #2: I believe God gave us grace and an incredible peace through it all.

The first few years of Samuel’s life were a challenge. Our son spent six months in the hospital and returned home to 24-hour nursing care for several years.

But we took each day as it came. If we faced challenges regarding Samuel’s health, we prayed for him to get better. That’s not to say we didn’t have hard days, but we all have hard days, don’t we?

Secret #3: Your child will surprise you.

The respiratory therapist told me we should have a ventilator party the day my son doesn’t need it anymore. My mind rejected the idea. Didn’t he know my son has a condition where he’s not expected to ever come off the ventilator? Perhaps he won’t need this life-saving equipment during the day at some point. Maybe. But to come off it completely was incomprehensible.

My son has been bucking the odds since the moment he was born. About two years ago, we were able to turn off the ventilator. The impossible happened. I count this as a miracle.

Secret #4: I don’t think I could raise our little guy without someone special.

I have an amazing husband. You may have heard the phrase, “God gives special children to special people.” In the case of my husband, I agree. Early on, he understood the medical aspects of Samuel’s challenges, from understanding the dizzying world of positive end-expiratory pressure (PEEP) to designing an apparatus used as a reminder to turn off the oxygen tank. And Samuel loves his daddy. They have a tender relationship of love and respect. He almost always listens to Daddy.

Secret #5: Our days have become extremely normal.

Our son loves his daily routine and will only get upset if he’s teething or when he wants his cereal. We have a lot of moments like the kissing game where pure joy overflows. And though I understand there are many differences between my son and a child without his diagnosis, we have found our happy place.

So we continue to parent our little guy who was given a “not compatible with life diagnosis” called thanatophoric dysplasia dwarfism. We don’t know what his future will bring, but we cherish each smile, every giggle and many milestones. And as we continue this journey, we see the secrets that surround us and are thankful.

Follow this journey on Miracle Mann.

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The Emotion I Try to Conquer as a Special Needs Mom

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While dreaming of being a mom, I imagined lavishing all my love on a wee one. I’d dress her in frilly dresses, make pancakes with her and talk like best friends. Never having had children, I didn’t know what to expect.

I found out having a son (yes, I had a boy instead of a girl) is like having my heart live outside my body. I never knew my emotions would be so tied to my child. What happens to him feels like it’s happening to me.

Those feelings can be amplified when you’re a special needs mom. There are the euphoric emotions of love, joy and happiness. Then there is the emotion many mothers attempt to conquer: fear. This is my battle. I found myself yesterday clutching my arm in a tight grip. I loosened my grip and realized my anxious thoughts had a hold on me, literally.

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My son’s allergy/cold symptoms are the source of my anxiety. An allergy or a cold in most children isn’t cause for grave concern, but when your son’s primary challenge is respiratory, this momma’s heart goes into overdrive.

Memories flooded back to the last time our son had a cold. Sleeping through the night was replaced with suctioning, breathing treatments and medicine in precisely timed intervals. We slept in the living room with all of our clothes on in case we had to rush our son to the hospital in the middle of the night. I shudder even writing about it.

So the runny nose, suctioning, breathing treatments and extra oxygen occupies my mind while remembering that night so long ago. Then a thought occurs to me while I’m in the kitchen. Why am I letting this past event create such fear in me? My son’s symptoms aren’t like they were that night. I need to stop living in fear and live in the moment instead. I let out a deep sigh.

I can do this. Release the fear and embrace the moment. Wipe his cute little nose, suction and simply love on him. I’ve been reminded of that a-ha moment in the kitchen several times, bringing much needed calm to my heart.

I wish I could tell you fear was completely banished from my thoughts, but that wouldn’t be true. I still hold my breath when he cries inconsolably and check to make sure his nose is running clear. But like a good piece of chocolate that needs to be eaten again and again to remind you how good it is (that’s my story and I’m sticking to it), I need to be reminded to live in the present.

Follow this journey on Miracle Mann.

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5 Things I Prefer You Not Say to Me as a Woman Living With Dwarfism

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Society can be fierce. I was born with achondroplasia, the most common form of dwarfism, and learned at a very young age our society has a hidden, yet very specific set of standards outlining what or who is viewed as desirable, attractive and valid.

Because I fall into the category of “being different,” my inabilities, decisions and actions hardly make it under the radar. When targeted at the profit of others’ amusement, my heart hurts. Denial doesn’t help the situation.

By being open about how the words and actions of others make me feel, I’m fighting the good fight — educating, opening eyes, creating awareness and changing the dialogue society has about disability, disease and differences. As a woman living with dwarfism who has also undergone numerous surgeries, here are five things I would prefer you never say to me:

1. “Don’t let it bother you” or “Ignore them.”

Bottom line: It bothers me. The staring, the comments, the laughing, the pointing — it hurts. If it didn’t, I wouldn’t say anything. Most of the time, I can brush it off and remind myself it has nothing to do with me. But there are moments when I simply can’t. It gets under my skin and I feel it in my heart.

Don’t tell me that I shouldn’t let it bother me because, chances are, you’ve never felt the embarrassment of having to excuse yourself from the table at a restaurant to go into the bathroom and cry after falling victim to people outwardly being rude and inappropriate.

Yes, it happens more than it ever should. Rather than telling me it has nothing to do with me or that those people don’t matter, just allow me to feel sad and angry. I’m human, I have feelings. Trust me, I know it has nothing to do with me. I’m a strong, empowered woman who is well aware of society’s ignorance. The fact that I’m strong enough to acknowledge and feel my emotions without projecting them onto others makes me a bigger person than those who choose to make themselves feel big at another person’s expense.

 2. “You can’t.”

As an adolescent, I longed to stand up and confront those who spurned me and doubted my abilities. But I couldn’t always do it. All of the negativity slowly dimmed my light, taking my self confidence down with it. Then I read a poem by Shel Siverstein that I took to heart.

The more you tell me “no” or “you can’t,” the harder I’m going to work to prove you wrong. Not because I have to but because I want to. My height is not a measurement of my abilities. Some things may be more difficult or take a little bit longer to accomplish but nothing, in my book, is impossible. Until you have physically walked in my shoes, you don’t have the right to tell me that my dreams and aspirations are not feasible.

3. “Can I take your picture?”

Yes, this happens, too. Unless you’re part of my family, a friend or a medical professional, the answer is an absolute NO. What hurts the most is catching people taking my picture without saying a word, let alone asking permission. I’m not a fairy tale, I’m not a statistic, I’m not my diagnosis, I’m not a label, I’m not your shorty, I’m not a midget. My dwarfism is not something to laugh at or mock, let alone document for your own personal keepsake.

I’m a 29-year-old woman, and I have a heart and soul just like you. I have a big heart and I know how to use it. Yes, I am short and what I care most about is far bigger than I will ever be. So big that it can’t simply be photographed. It’s love. Love for me and for you — everyone. When we truly love, we are happy. The pursuit of happiness is a fundamental human goal, and we all play a vital role in each other’s. The next time you feel inclined to take a picture of someone who looks different, please don’t. Choose to smile, have a compassionate view of the human condition and celebrate different.

4. “Your situation is special.”

What does this even mean? No one person’s story is greater than another’s. Different, yes, but never more valid or justified. There is never a reason to discredit yourself or anyone else for what they have been through and the challenges they have overcome.

Damn straight my story is special. But guess what? So is yours. Height, race, religion, sexual orientation — I believe they don’t matter for anything in life. It’s the size of your heart, your willpower and your ​determination that help make you a better person.

Choose to use your energy in positive, productive ways to uplift, encourage and love each other. Please don’t justify your negative attitude toward my abilities by telling me that I’m special. Just don’t.

5. “You did it to blend in.”

I live my life according to my own values. I understand that we all see things differently, and I embrace the diversity that makes people individuals. In fact, I believe that diversity is what makes us beautiful. No one has any right to assume moral authority over anyone else. Never in my life would I fathom judging another person based on their decision to undergo a medical procedure that they believed would better their life. Everyone’s needs vary, and I respect that you live according to your principles.

But you also need to respect me and my decisions like the one I made when I was 12. When other girls my age were learning how to put on makeup and pick out the perfect outfit at Abercrombie & Fitch, I had made the decision, with support from family and friends, to undergo limb-lengthening procedures. Believe it or not, my motivation was not the added height — that was a plus. I know it was the right decision for me, and I have no regrets. Here’s the thing: You can’t force your beliefs on others, and no one is in any position to decide what’s right and wrong for the rest of us. So please don’t tell me that I made the wrong choice or did it in order to blend in with society. For the rest of my life, I will be a bright splash of color on society’s ideal, yet lackluster canvas.

Comments like “You can’t,” “You’re a midget,” “How could you?” and “Those people don’t matter” are inevitable for now. But I can and I will continue to stand my ground in this noble, well-intentioned battle. You can, too. The next time you find yourself forcing judgment upon another person, take a step back and imagine taking a walk in their shoes. We all have a choice. We can push someone down or we can lift them up. Choose the latter. Replace that judgment with love. It’s a cause for celebration, the beauty of difference. Join me. Put down the burden of pretense and be the person who helps someone else look forward to their tomorrow.

Kristen DeAndrade

Follow this journey on Little Legs. Big Heart.

Lead photo source: Emily Whitaker

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When a Woman at the Bus Stop Called Me the M-Word

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Being a little person, I’ve dealt with people staring, gawking and whispering things behind my back my entire life. I’ve learned to tune it out and ignore it. Most of the time if a younger child is staring, I try to smile at them and make them smile at me. If an adult is staring, I’ll smile, too, but most of the time, I’ll just ignore it completely. But when it is right in your face, it’s a little hard to ignore.

While living on my own for school in San Francisco, I’ve dealt with just a few instances of people actually talking to me. They’ve asked how old I was, how tall I was and one person even yelled, “You’re short!” at me from across a walkway once. As if I didn’t know that already!

This time was quite different. I was waiting to catch a bus back to my dorm with my roommate. We were just chatting at the bus stop when a woman came to ask us for money. We politely declined and said we didn’t have any money to spare, being poor art students. The women seemed to accept that, but then turned to me and said, “You’re small, huh? You’re one of them midgets, aren’t you?”

In the little person community, the word midget has been widely deemed as a derogatory term. Although it has been used throughout history, because of its negative connotation with a freak show, it has been deemed as offensive, since little people are obviously not freaks and are not around for other’s enjoyment.

Now, when this woman said the M-word, she was really up in my face. I’m usually not one to speak up in general, but at this point, I had no choice.

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“That’s not a nice word.” I said, simply.

The woman looked surprised, and said, “Oh, well then, what do you want me to call you?” Her tone of voice sounded extremely sarcastic, and to be honest, I was unsure if she was being serious or mocking me at the time.

“The proper term is little person or little people,” I replied.

The woman then nodded and said, “OK, little person. I see. All right, well, you learn something new every day even when you’re old.” She then took my hand and said, “I’m sorry. I didn’t mean to offend you and now I know. Thank you for telling me.” While her tone still seemed sarcastic, I hoped she meant what she said when she went on her way.

At the time, I still was unsure if the woman really took away anything from our encounter, and in truth, I was pretty upset being talked down to my face. But now, I’m happy it happened, because hopefully, if that woman did take something away, I hope she told others of what happened and is ending the use of the word.

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How I Use Negative Comments to Advocate for My Son Who Has Dwarfism

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We quickly learned when our son was born with achondroplasia, the most common form of dwarfism, that perhaps his biggest challenge in life wasn’t going to be his physical limitations with shorter limbs than his peers, but the prejudices he might face because he’d look different and stand out from the crowd. He wouldn’t be the typical tall, dark and handsome image of a man so often portrayed in the media. In fact, Disney characters (the seven dwarves) and mythical images of people with dwarfism have led some members of society to believe such people aren’t real; not so long ago, they might’ve been considered “freaks” by some.

After our son was born, at his six-week check-up, the doctor told me he would probably get a job in the entertainment industry or circus. Wow, was I really hearing this? My son might be shorter than his peers, but he can achieve anything he puts his mind to. I quickly answered her with, “Or a job as a doctor, teacher, accountant or whatever he chooses to do.” It was hard to believe educated people still had such ignorant views. Quite early on, I learned part of my journey as a new mom to a child born with a disability would be to educate and advocate on his behalf. I was determined not to react in anger but to positively challenge people to think about the words they speak about my son.

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It’s funny how comments can happen when you least expect them to. One day I was enjoying time with my son, wandering around a large cash and carry store. I was pregnant with my daughter at the time and life was happy. Suddenly, I was taken by surprise as a middle-aged man with his wife made this comment: “Where are his six brothers? You should have brought them with you and you would have got some bargains.” I got his joke right away, but I didn’t find it funny. My son was 2 at the time and thankfully didn’t understand the label being placed on him. Again I had to challenge this man and move on.

Such comments hurt when you’re a new parent coming to terms with the fact that your child is going to have to face ignorance you never had to face growing up. Thankfully this middle-aged man found me in the parking lot and apologized to me profusely, explaining he hadn’t thought before he spoke. I was grateful for the apology. Had I not challenged this situation, maybe he would have continued his day believing what he said to my toddler was just fine.

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My son is now 4, and I can honestly say far more positives have outweighed the negatives. I’ve had so many opportunities to educate, such as explaining to a child who asked if my son was a “dwarf” that my son was born with a form of dwarfism, which means his arms and legs are shorter, but his name his Samuel and that’s what we call him. I’ve learned the labels we place on people who are different aren’t always helpful; rather than integrate and normalize differences, sometimes they have the opposite effect.

If only we could all see each other as humans first and foremost, people with feelings. I teach all of my children the importance of kindness and sometimes people are not kind, and maybe that’s because they have unhappiness in their hearts.

My son may be short in stature, but he’s much more than that. He has a name, he’s handsome, his presence fills the room and he’s kind. Because of him, I was inspired to write a children’s story (“Strong and Mighty Max”) to encourage young children and their parents reading to them that everyone is born different, but what really matters is the size of your heart.

“Strong and Mighty Max” is short in stature, but his heart is big and his dreams are bigger.

To find out more about my story that is to be published, visit my Facebook page or website.

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The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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. Check out our “Share Your Story” page for more about our submission guidelines.

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When a 5-Year-Old Had the Perfect Response to My Son’s Feeding Tube

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When my best friend wanted to take my children and me horseback riding, I was hesitant. It’s not that I don’t want to be social. I’m not trying to hide my kids from the world. It’s just that sometimes taking my two super cool, but medically fragile children out in public can be challenging.

There are the obvious reasons for this. I need to lug around endless medications for my daughter and supplies for my tube-fed son. But that’s not really the problem. It’s the stares and the questions that come with taking them out into the world. I like to avoid them at all costs, and I constrict our world, making it smaller and smaller by the day.

Walking in public with my children is like being in a parade. They are adorable, so the attention is warranted. My 3-year-old daughter saunters around like she owns the place. She has a head full of dark Shirley Temple curls, a 1000-watt smile and bright blue eyes. She is quite possibly the cutest thing you’ve ever seen, except, of course, for her brother. He relies on his chocolate eyes, perfectly fanned by lashes any woman would kill for, and a chipped-tooth smile to draw you in. Yes, my kids are adorable. But that’s not why people notice us.

My 2-year-old son towers over his older sister by a good three inches. She stands at 30 inches tall and weighs just over 20 pounds. People often ask if they are twins. I should just learn to say yes instead of answering the endless questions I usually get.

“How old is she?” Three.

“Wow, she’s really small.” Yes, she is.

“Is she a midget or something?” Who even says midget anymore? No, but she has a form of dwarfism.

“Well, will she grown bigger?” Got me.

Once they’re done with her, these curious people inevitably move on to my son and his feeding tube and backpack.

“What’s wrong with him?”

“What’s the tube poking out from his shirt?”

“Are you going to school with that backpack on?”

After 10 rounds of questioning, I’ve learned that it’s easier just to stay home.

Yet, here we are at the Little Dude Ranch with my best friend and a half-dozen strangers. Sure enough, someone lets their curiosity get the best of him.

His name is Zane. He’s 5 years old, and he’s fascinated by my son’s backpack. He’s polite and says, “Excuse me,” before letting the questions fly: “Why does he have that backpack? What’s the tube in his shirt? Why does his belly stick out that way?”

Zane’s mom is quick to shush him, glancing pleadingly at me. “I’m so sorry. He can be a little overzealous” It’s completely OK, I tell her. I can answer this.

“Well, he has this backpack because it has all of his food in it. See that little tube under his shirt? That tube goes right into his stomach and feeds him all the time. It’s really cool because he gets to eat all day long without having to stop and sit down for lunch.”

“Oh,” Zane replied. “Mom, did you hear that? He doesn’t have to stop playing! I want a backpack like that, too!” And that was it. End of conversation. Satisfied with my answer, he ran off to check out the ponies, hollering for my son to follow him.

His mother smiled and thanked me for my patience and understanding. She darted after her son so quickly that I never got to thank her or her son. So, here it is:

Thank you, Zane’s mom. Believe it or not, your son is the most tactful observer of the backpack we’ve come across. You have raised a beautifully inquisitive yet respectful child. I wish more adults were like him. Thank you, Zane, you accepting little 5-year-old, for including my son when you went to look at the ponies.

Thank you both for helping me realize that the world — our world — could use a little more understanding and a lot more 5-year-olds.

Maria Colon the mighty

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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