Evelyn Mann

@evelyn-mann | contributor
Evelyn Mann is a stay at home mom who lives in Tampa, FL raising her son born with a rare form of dwarfism. Though originally told her son would not survive birth, God had other plans. Only 1 of 9 survivors worldwide, her son has overcome all odds. Mrs. Mann has appeared on Fox and ABC media sharing her story. Her memoir, Miracle In My Living Room is available on Amazon, Barnes & Noble and on her website, www.miraclemann.com. Her favorite pastimes are cuddling with her son and reading books.
Evelyn Mann

The Spectrum of Thanatophoric Dwarfism

Are all children alike? Any mother of multiples will tell you, no. Each child has his/her unique personalities and qualities. Some children are quiet and reflective, others are outgoing and bubbly. No one questions this truth. When my son was diagnosed with a rare form of dwarfism called thanatophoric dwarfism (TD), I assumed all children with TD had the same characteristics. Cute button nose, sho rt arms with adorable kissable web-like hands, sweet tiny toes and a small chest are a few visible characteristics of his diagnosis. For years, I thought all children with TD were the same. As time went on, I would hear of children with TD having differences from my son. Some would require a ventilator to breathe, and others would not. Yet others would have hydrocephalus or seizures. I soon would come to the conclusion that TD, like many other diagnoses, has its spectrum. I continued to compare my son to other children with TD. I heard of one child in his late teens who claimed to have TD. This young man not only was able to communicate in complete sentences but in two languages as well. My son, not able to verbalize using words, is very different from this teen. Physically they look similar, however, I dismissed this child as not having TD because of his cognitive abilities. As mothers called me from around the world to find out about survivors of this potentially lethal form of dwarfism, it never dawned on me to include this child in the mix as not only a survivor but a thriving survivor. This changed when I received a phone call this week from a mother of a sweet girl with a form of TD which doctors said has significant differences from traditional TD: larger lungs, no developmental delays expected, not needing a ventilator and with her skeletal showing markers more of achondroplasia than TD. This child is different. Halfway through the phone call, I remembered the young man I had dismissed as not having TD. Could it be? Could he have a variation of TD like this little girl? Is there a new hope for a different type of TD? I am no genetic scientist. I am only a mother putting two and two together. However, my perspective has changed. Now when I hear from a mom who is pregnant with a child with TD, I can point to these two children as a possibility of not only survival but as a way to offer hope in what doctors often consider a hopeless situation. There is a new spectrum of hope. And hope is precious. Does your child’s diagnosis have a spectrum? How do you encourage pregnant moms or new moms with your child’s diagnosis? Share your stories. I read each one. We want to hear your story. Become a Mighty contributor here .

Evelyn Mann

Posting Photos of My Son With Thanatophoric Dysplasia

Will my son mind I am posting pictures of him to social media? This is the conundrum most parents are facing with sharing an adorable photo of their child’s momentous and not-so momentous moments. Raising my firstborn, I snap a myriad of pictures of my miracle boy. Proud mom? You bet. Most times, the comments I see aren’t, “My, how he has grown.” Because, as a child with dwarfism, growth happens very slowly. I notice slowly too. A shirt fits too tightly ora onesie doesn’t snap closed. But, the pictures give hints of the transition. The pictures also chronicle the making of a miracle. When a mother is given a potential diagnosis of thanatophoric dysplasia meaning “death-bringing,” it’s devastating. The hopeful pregnancy becomes a distressing circumstance, to say the least. Now, imagine this same mother searching the internet and finding a picture of a joyous, happy 10-year-old. Shock, unbelief and relief combine together as hope begins to fill her heart. I’d wished I’d seen such a picture when Samuel was born. However, I did not. Instead, I was counselled not even to look on the internet. I did finally look… I had too. I needed to know. I found many pictures of sonograms but no survivors. No images of sweet button noses, dimpled smiles or a video of a child’sbelly laugh. I had no way of knowing my son would grow to have a happy temperament which would light up my world and all who would come to know him. How could I know? I had no evidence or proof to the contrary. This is a major reason I post pictures of my son. To give this proof. To fill the heart of amother with hope. To show miracles happen. The question remains, would my son mind his proud mother displaying him in most of his glory all over social media? I read in another article about this topic where a mom asks her 8-year old and 10-year old for permission to post. I contemplate this strategy but quickly dismiss it. Why? Because my son is nonverbal. And, as much as my son loves his iPad filled with his favorite Elmo videos, he has no concept of Facebook or any other social media yet. This is the challenge of developmental delay. Will he achieve this awareness? Timewill tell. I have been in contact with many mothers who were given hope from a simple picture. And, as a mother who was given no hope, I know how valuable an image can be. A snapshot of my son laughing could give another child a chance at life. When another mom receives news from the medical establishment like I had, they can now search the internet and see Samuel’s belly laugh on You Tube. Further research would reveal my son’s website or Facebook page. For these mothers to see a survivor, they can then advocate for their children and hopefully inspire doctors to believe as well. I’d love to hear your thoughts. Post or not post, that is the question. Follow this journey on A Miracle in a Living Room.  

Evelyn Mann

4 Ways to Encourage a Special Needs Family

“What can someone do to encourage you?” This question came as a surprise. The man who asked stopped by our table at Sweet Tomatoes. He saw my son, Samuel, had a tracheostomy, and with a smile and a kind heart, he approached us. At first, I didn’t know how to answer. My husband, Ralph, and I looked at each other, pausing for a moment. Ralph spoke up first saying we usually encourage others rather than the other way around. The man nodded and then asked us many other quality questions. However, his first query stuck with me. Given another chance to answer differently, what would I say? 1. Talk about our children. Like most parents, talking about my son brings me joy. So chat away. Chances are you’ll get a full update on our little man’s shenanigans. I have to remember to catch myself so I don’t talk too much. Am I the only one? You can ask a special needs parent how their child is doing in school or what fun thing they have learned to do. A topic that’s sure to start a conversation. 2. Offer a simple act of kindness. A dear lady from our church who loves children occasionally comes by spending a half an hour reading a book to Samuel. What kid doesn’t love attention? While he receives personal one-on-one time, I’m freed up to do a household chore or two. This act of kindness is a blessing. Maybe your gift isn’t entertaining children, but you can do a household chore. Offer to go to the grocery store or drop by with home-cooked meal. It’s often hard for special needs parents to get out. Something as simple as mowing the lawn can be a big help, too. Try any one of these hands-on practical tips or pick one of your own. 3. Offer words of encouragement. Affirming words are my love language. I read every Facebook comment, Twitter message and blog comment for encouragement. When Samuel was in the hospital, in the days before Facebook (imagine that), I would read comments on Samuel’s CaringBridge website. During many difficult days, the comments posted helped to lift me up right when I needed it. So, comment away. You can also send an encouraging card letting them know you are thinking about them. Who doesn’t like to get “fun mail.” (“Fun mail” is personal mail not related to advertisements or bills.) 4. Offer your prayers or good thoughts. Whether Samuel is feeling great or has a runny nose (allergies), I am thankful for family and friends who are praying for our sweet boy. Just today, a friend texted me asking for an update on how my son’s allergies are doing. These prayer partners are so sweet and patient to put up with so many prayer requests over the years. What a blessing to have this resource at my fingertips. Ask a special needs parent, “How can I pray for you?” You may be surprised at the answer you receive. Ask if you can share the prayer request on a church prayer chain or on social media. For our family, being healthy is a daily prayer request. The kind gentleman’s interest in our lives was truly touching. His example inspires me to ask others, “How can I encourage you?” Then I’ll tuck their answers away in my memory database (or iPhone). I may not be able to do them all, but I can pick one and hope to make a difference. Follow this journey on A Miracle in My Living Room. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and 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.

Evelyn Mann

The Top 6 Reasons I’m a Thankful Special Needs Mom

As I ponder what to be thankful for this Thanksgiving, it’s easy to find an answer. These are my top six reasons to be thankful. Reason #1: A miracle in the making. A few weeks after my son Samuel’s birth, he was diagnosed with a rare form of dwarfism called thanatophoric dysplasia. His days were not promised to us. Indeed, we lived each day understanding our son’s life was precarious. Days turned into weeks, and soon we celebrated his 1-month birthday. Then, on his 6-month birthday, he came home from the hospital. That was 10 years ago. We no longer celebrate “month” birthdays, but this Thanksgiving, I thank God because I believe he gave us us the blessing of raising a miracle. Reason #2: A boy’s love for his daddy. As I lean over to lift my son from the car seat, he presses his arms tightly to his body. I stand up and pause. Hmm, that’s unusual. I try again. Same reaction. I ask my husband to try. As my husband approaches, he wiggles his fingers and offers his son a huge smile. My son looks up, flashes his pearly whites and raises both arms in the air. I nod, now understanding. He wanted his daddy to pick him up, not me. I’m not upset by this change of procedure. I’m delighted to see this relationship between my husband and his nonverbal son.  He loves his daddy. Now, he looks for his Papa to pick him up all the time. I am thankful for this beautiful interaction showing what love looks like. Reason #3: The wealth of health. I’ve never been more grateful for health than now. Could it be, as I tip toe into my 50s, health has more bearing? I pray fervently for my sweet son to have health. Indeed, I have prayed for this boy daily all his life. Every sniffle, runny nose and cough raises my eyebrows. So it is with most mothers. My toolbox has a couple of extra tools to help my son. A nebulizer to help his coughs. A concentrator for low oxygen levels. And suction equipment to help with mucus. But, more than the tools, I am thankful for not needing to use them. For days upon end, his equipment is silent. The “on” switch stays in the “off” position. For this, I am most grateful. Reason #4: A boy’s toys (his iPad). Eating at Texas Roadhouse, we placed Samuel in his stroller at the end of the table. As I devoured my salad, the patrons next to us get up to leave. Passing by the stroller, an elderly gentleman stops and observes Samuel’s fingers flying over the touch screen of his iPad. “My, he sure knows how to use it.” He then chuckles, adding, “Kids these days.” I imagine he might have been thinking of his grandchildren. And yes, my son knows how to whip his way around the YouTube Kids app and photos on the iPad. This is one of the tools in our parent toolkit. And I am thankful. It keeps him re-focused (most times) off of his other love, cereal. Reason #5: Every parent’s go-to: O’s. My son is quite motivated by a round piece of cereal in the shape of an O. He has learned to stand reaching for this golden circle. He is attempting to walk (sideways) to reach this morsel on the couch. He will obey commands from the school teacher in attempt to not only please her but to secure a delectable reward. And so, I am thankful for a bag of Three Sisters brand Honey O’s. Don’t leave home without it. Reason #6: The preciousness of life. I pick up my 22-pound package of love and hold him tight. I tickle his belly, and he erupts in laughter, making his whole body shake with joy. My laugh lines appear as I add my giggles to his. I gaze into his face, awed. How did I get so blessed? It strikes me all at once how precious life is. I take these moments, press them into memory and seek to add more, day by day. I’m thankful for the snuggles, the giggling and the laughter of a child. A special child who has exceeded all expectations of a lethal diagnosis of dwarfism. I thank God for this gift. Thanksgiving — not just a day, but a daily habit. Follow this journey on A Miracle in My Living Room. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and 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 Share Your Story page for more about our submission guidelines.

Evelyn Mann

To the Special Needs Parents Who Don't Always See the Glass as Half Full

Approaching the entrance of the concert hall to attend Vivaldi’s “Four Seasons,” I see a family ahead of me. A boy is walking between his parents. I notice the boy’s blond hair and height. The top of his head reaches to about mid-arm of his mother. He looks to be about 10 years old. Then it strikes me. That’s my son Samuel’s age. In that moment, I realize I’m living an alternative reality. My son isn’t tall. He only stands 25 inches. He isn’t walking alongside me to enjoy this performance. He’s at home with a qualified trach-trained nurse watching over him. It’s too much of an unknown to bring him into a venue with 2,000 other music enthusiasts. I couldn’t imagine Samuel getting upset and needing to be taken out of the concert hall. Or worse yet, what if he needs medical intervention or even something as simple as suctioning? So to avoid all these unknowns and potential opportunities for things to go awry, we have a wonderful nurse caring for our son. The performance begins and soon the soothing music washes over me as I close my eyes to hear each note. The boy I saw earlier is but a memory. That is, until much later. For days afterward, the image of the boy walking between his parents keeps popping into my head. It reminds me of what I don’t have. Soon after Samuel was born, I remember seeing a friend’s baby at the mall. All snug in his stroller, I stared at him for a full minute. I didn’t notice his hair, his face or his cute clothes. I was simply awed at how well he breathed. That was a sign, early on, I was living an alternative reality. Those who know me will agree that I rarely, if ever, contemplate this reality. I choose to see our glass as half full. I reflect on the miracle of my son’s life from a dire diagnosis. I bask in the joy of his smile and his laughter. I believe his life is a gift from God for which I am extremely grateful. I believe he’s a living testimony showing nothing is impossible with God. But things tend to sneak in unawares. Like the day I realized I won’t be a grandmother. I quickly brushed the thought aside. What does it help me to see what I don’t have when what I do have is staring at me asking me to kiss his hand? So I choose to live in the moment. To cherish the time I have with the son God has given me. If I miss this precious truth, I will only see the glass half empty, and completely miss that it’s also half full. What do I wish someone told me when I first started this journey, back in the days of the NICU, to help me see my glass as “half full”? I imagine a kindred spirit, a woman sitting me down to say: There will be many days you find yourself focusing on the negative effects of your child’s medical diagnosis. Instead, be thankful for the good also, even if it’s the fact that your child is breathing or gives you the sweetest smile. The hectic pace of life will threaten to take away your joy, the joy of being a mother to a miracle. Be purposeful and protect sweet times with your child. Establish a reading time even if they can’t read or comprehend. Your presence is felt. Snatch snuggles and hugs throughout the day. You’ll both benefit. Don’t focus only on what your child can’t do. Each child’s milestones are different. Rejoice in your child’s first step, even if it’s when they are 10 years old. Or when they make a choice or say their first word. Your child may never say a word, but his smile speaks volumes. Believe the impossible. Doctors, nurses, staff and a whole host of others have opinions on what will happen with your child, but I believe God has the final say. My son came off the ventilator against all odds. Hope for the best even though the circumstances tell you otherwise. Even though it may seem impossible. If you haven’t had a woman hold your hand to offer tips like these, imagine having a cup of tea with me as you read this. I share my heart and a hug with you. You are not alone. We are all in this together. There is always hope. Follow this journey on Miracle Mann. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and 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 Share Your Story page for more about our submission guidelines.

Evelyn Mann

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

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. 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.

Evelyn Mann

3 Surprising Ways Strangers Have Reacted to My Son With Dwarfism

My son’s blond hair and hazel eyes are not his most unique features, though quite special. His beautiful smile, captivating everyone, is not what sets him apart. My son’s dwarfism is what people notice when meeting him for the first time. I welcome each encounter hoping to share the miracle that is my son. Here are a some memorable moments that especially stand out to me. 1. A Surprise Question: “How old is your baby?” the nurse asked. I winced at the word, baby. Mmm, how should I answer? I’ve come to the realization that being direct is the best method. I used to answer with just a number, not mentioning whether it was in months or years. I thought being elusive was the best policy, but then I’d see a look of confusion and I’d end up confessing my son’s true age. You see, my son has a rare form of dwarfism called thanatophoric dysplasia. At 10 years old, he is 25 inches long and weighs in at around 20 pounds, give or take depending on how much cereal he eats. He has the face of a young boy but the body of a baby. We were at a restaurant in Charlotte, North Carolina when a waitress asked about our son’s age. We both paused and then my husband asked, “How old do you think he is?” She looked at Samuel, silent for a moment. “About nine months old.” We both smiled. Instead of leaving the conversation there, my husband began to share what a miracle our little boy is overcoming a “not compatible with life” diagnosis. We shared how he wasn’t expected to live past birth, his months in the hospital and how we were blessed when he was able to come off his ventilator. 2. A Surprise Smile: Recently, as I was entering the grocery store, I was following several steps behind my husband as he pushed my son in the stroller ahead of me. A young lady with silky brunette hair was leaving the grocery store. As she passed the stroller, she tilted her head back to look at my son. I then saw her face light up with a brilliant smile. I tucked her response in my heart. We didn’t get to tell her she just saw a miracle, but her response really touched me. 3. A Surprise Reaction: At a local restaurant, we followed the hostess to a booth. As we passed another table, my son’s eyes mesmerized a tall blonde eating her meal.  After we finished our meal, I asked to pay the tab and was informed the bill had already been paid. Seeing my surprise, the waitress pointed to the blonde. I went to her table and thanked her for the kindness. She proceeded to tell me how my son captivated her as we passed her table. We exchanged emails. I received this email from her the next day. “I saw everything that was important in his eyes when he first looked at me and I have never experienced anything like that in my 48 years. I was supposed to meet Samuel and when he left, I had something from him….courage. I have been afraid of making changes, taking initiatives, loving, and the list goes on. I was up all night thinking about what you had said to me and reflecting on the look I received from Samuel. It may sound a little nutty, but he is the angel I desperately needed to meet.” I treasure how my son moves the hearts of those he meets. As our son continues to grow, very slowly, we’ll continue to receive a variety of reactions from the public. And as we do, we’ll continue to share our miracle, and hopefully he’ll continue to inspire others. Follow this journey on Miracle Mann.

Evelyn Mann

Conquering Anxiety as the Mom of a Boy With Dwarfism

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. 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.

Evelyn Mann

5 Tips for Interacting With My Child With Special Needs

One night, I didn’t feel like going out for dinner. It was raining and I wanted to stay in. But the rain stopped and my hubby, Ralph, convinced me to go out. So we went to a local salad bar restaurant. After going through the salad buffet, we found a spot and settled in. My son, Samuel, was persistent in asking for his cereal. The sound he makes reminds me of a duck. Ralph jokingly said, “You’re a broken record, kid.” A lady sitting at another table laughed. We were almost done with our meal when the lady came over and said she was a pediatric nurse. Ralph coaxed Samuel into giving her a wiggle and smile. Yep, the smile does it every time. She asked about our little guy, and we joyfully answered her questions. What parent doesn’t love to talk about their kid? It was so nice to fill her curiosity and share the joy of our son. We left the restaurant feeling like we made a new friend. We would have missed the moment had we not gone out. Next we went to Sam’s Club. This time we erroneously left Samuel’s cereal in the car. It just started to rain when we got in so we decided to do a quick shopping trip. As we were going down the last aisle, I saw a woman in a wheelchair with a trach. Excited to introduce myself, I explained Samuel had a trach, too. She smiled back and asked us a few questions about our son. She was so warm and friendly, and I felt comfortable asking a question I’ve always wanted to know. “What does it feel like to be suctioned?” She explained it didn’t feel good and that it was like the feeling you get when you gag. Instead, she uses her cough reflex to avoid suctioning and hasn’t done it in five years. Fascinating. We suction Samuel several times a week. I pondered how to teach him to learn purposeful coughing as an alternative. She happily shared her experiences with us as we continued to talk. Soon, Samuel was almost inconsolable, demanding his cereal. We said goodbye to our new friend. I headed to the check-out while Ralph returned to the car where the golden cereal awaited. Waiting in line, I smiled. What I would have missed if we hadn’t gone out. If you are wondering how to interact with people who have special needs, our night out gives a few hints (plus a few extra): 1. Don’t be afraid to introduce yourself. Like the nurse did. Or like I did when meeting the lady at Sam’s Club. 2. Don’t be afraid to ask questions. Even if it’s a simple question like asking a child’s age. You never know what you will learn. I share about the type of dwarfism Samuel has to create awareness. And if you have kids, that awareness is absolutely educational and worth sharing with them. 3. I know it’s hard, but try not to stare. Smile instead. It just may lead to a conversation. 4. Don’t touch the child or the stroller. Even shaking hands is something I prefer not to do. I have to be constantly vigilant to keep Samuel healthy. Before having Samuel, I wasn’t so concerned. I also got a cold almost every year. Now, I rarely get a cold. And, thank God, neither does Samuel. 5. Do fuss over the kids. I’ve had many people come up to me and comment on how cute Samuel is. I use that opportunity to share something about our little miracle and hopefully get him to smile, warming another heart. So the next time you’re out, try one of these suggestions. You never know, you just might make a new friend. Follow this journey on Miracle Mann.

Evelyn Mann

How a Special Needs Mom Answers the Question, 'What Do You Do?'

Conversation fills the air. A waitress serves appetizers on a silver platter to well-dressed guests. Soon, I’m in a conversation with someone I’ve never met when the question comes up. “What do you do?” As in, what do I do for a living? What value am I providing to society? What is my worth, net or otherwise?” Have you been there? Do I say I’m a special needs mother? An author? Or a blogger? Though all three are true, the majority of my time is dedicated to caring for our son. Do I recount his latest achievement of conquering crawling at 9 years old? Or how he’s just now learning to stand? I met another mom at a baby shower recently. She shared about her son and his antics playing with the dog in the swimming pool. I listened, wondering how I could relate to her. Interrupting my thoughts, she asked if I had any children. Yes, I answered. I shared a little of my journey and received the same blank look I must have given her when listening to her story. We were both moms, but we were at opposite ends of the spectrum. Special needs mom vs. non-special needs mom. Is her role in raising her child more valuable than me raising my child with special needs? Who knows, maybe her son will be a future president. Is there value in raising Samuel? Is my worth as a mother less because my son won’t be president, a doctor or dentist? Perhaps, yes. But it depends on how you look at it. When watching an action movie, we find ourselves routing for the underdog, overcoming all odds to surprise the audience causing them to cheer. My hope is that my son does the same. To point to his biggest achievement of surviving a lethal form of dwarfism. To share with the world that miracles happen. Though he may not walk or talk, I choose to focus on his life, a life that inspires without saying a word or taking a step. Over the years, I’ve received many emails from other families who found Samuel’s story on the internet. They, too, were given a negative birth diagnosis. My son inspired them to believe that nothing is impossible. That hope is a precious commodity offered in the form of a little 20-pound package. Hope, inspiration… the stuff underdogs are made of, if you ask me. And though I might not be able to relate to a non special needs mom extolling her child’s achievements, achievements my son will never reach, I find peace knowing Samuel touches lives in unique ways. So when I’m tempted to think my journey as a mother is less than other mothers’, I need to be reminded inspiration is a great achievement. May all our lives inspire. As I go to a wedding this weekend, I’m sure I’ll be asked what I do. I can proudly say I’m the mom of a miracle. I’m special needs mom. How about you? How do you answer the question, “What do you do?” Follow this family’s journey on Miracle Mann. 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 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. 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.