Deanna Smith

@deanna-smith | contributor
Deanna is passionate about special needs advocacy and new motherhood- two things that go hand in hand for her right now. Three kids four and under, the oldest of which has Down syndrome- keeps her quite busy. But there’s always enough time left at the end of the day to write all about the insanity at her blog Everything and Nothing from Essex. And to laugh- always, always there is time to laugh. 
Deanna Smith

To My Daughter With Down Syndrome on Your First Day of Kindergarten

Dear Addison, Today you enter kindergarten. You — a big, beautiful, grown-up little person — begin your educational journey. It’s hard to believe you’re the broken baby I cried over in the NICU. It’s hard to believe your bouncing ponytail, infectious smile and sparkling blue eyes are in my life when I remember all too clearly placing a trembling hand on my swollen belly six years ago, scared at what Down syndrome would mean for the baby I had yet to meet. Because I was scared. Terrified, actually. I received your diagnosis with bitter tears and twisted it to mean whatever my prejudices wanted it to mean. But I was wrong. There was nothing to be scared of. In the past five years, you have surprised me with your brilliance and ability, delighted me with a beautiful personality and humbled me with how blessed I am to be your mother. Now as I think of you sitting tall in your seat marked with your name, listening to your teacher, learning alongside your peers and being a kindergartener, I am once again terrified. How will you do with the academic side of things? What if you become isolated from your peers because of your difference? What if you don’t like kindergarten? What if you are made fun of and I’m not there to protect you from it? What if you struggle to follow classroom instructions and rules? What if you don’t click with your new teacher? What if you fall too behind in the academics to successfully remain in the mainstream classroom? You have been begging to go to school all summer, but yesterday when you realized that “school” was no longer your safe preschool classroom with the teacher you love so dearly, I could see you processing this all a bit differently. I am terrified. This is a big change. For a big girl. For a big step toward the rest of your life. And so I fall back on what you have taught me so far: Do not, I repeat, do not underestimate you. And so I won’t. I have utmost faith and confidence in your ability to adjust to this new thing. To not only adjust and survive but to thrive while doing it. I know you’ll carry that infectious smile and those sparkling blue eyes into the classroom with you. How can those other kids help but love you, too? Remember what we have been working on: kind hands. Kind hands. Treat the other students the way you want to be treated. Obey. Do not just run off whenever you feel like it. Wash your hands. Frequently. And if you don’t get something the first time? Try again. And again. And as many times as you need to to learn new things because it’s worth it. (What am I talking about — you taught me that last point.) I know you can do this. It might take a while for you to figure out the new classroom and the new expectations of kindergarten, but you’ve got this. (And I’ve packed your favorite chocolate milk in your lunch to help renew your superpowers halfway through the day.) I love you, baby girl, and I’m so proud of you. You are amazing. If you have such an awesome time at school that you forget about boring ol’ Mom, no worries. I’ll be the one standing over here in the cheerleading outfit holding pom-poms and yelling your name. (And remember who restocks the chocolate milk!) Have a beautiful first day of the rest of your life. I can’t wait to hear all about it. xoxo Mama Deanna Smith is the author of “Motherhood Unexpected,” a Christian fiction novel exploring an unexpected diagnosis, an unexpected pregnancy and an unexpected source of healing. Follow this journey on Everything and Nothing From Essex.

Deanna Smith

These 2 Photos Taught Me Something We All Need to Understand

The other day I was trying to get a picture of the newly mowed lawn (which had previously been a prairie). My son Carter followed me out, so I decided to include him in the picture. “Jump!” I shouted. And so he did. Later that day I was back out with all three kids, and I decided to get a jumping shot of my daughter Addison too. “Jump!” I shouted. And so she did. When I uploaded the pictures, I was struck with the contrast between them. Addison has jumped with her feet off the ground before, but for some reason today this was as high a jump as she was able to muster. Carter excels at jumping and I felt happy to just be able to capture one of them so clearly. When you first look at these pictures side by side, your first thought might be, “Poor Addison. Down syndrome is holding her back from achievement.” But before you complete that sentence I need to give you more background. You will notice in Carter’s jumping picture, he’s in sleeper pajamas. For Addison’s jumping picture, she is in a super cute outfit. You see, Addison is very good at dressing herself. She will take herself to the potty, put on a fresh pull-up, and then put on her pick of clothes (or sometimes things I have laid out). Carter? He thinks he is being majorly tortured if I expect him to actually take off his sleeper by himself to go potty, let alone dress himself in new clothes — I’m a mean mommy with too high of expectations! What’s my point? I feel like this excellently illustrates something I have been feeling for a while — we are all good at different things and none of us should be judged based on the things we aren’t good at just because someone else along side us is good at them. And vice versa. These skills grow and change as we grow and change (oh goodness I hope Carter isn’t in college some day calling me to come help him with his sleeper zipper). But the truth of the matter is, we will always have different areas in which we excel and areas in which we simply don’t. Sometimes I think people look at Down syndrome and see only the difference in jump heights… … without taking into consideration there are many other moments when it’s Addison flying into the area and Carter is barely lifting his heels. Moments like before the first picture while she dressed herself and he refused to try. I don’t say this to compare the two or to pit them against each other. I say this merely to remind myself of a simple concept having a child with special needs has taught me: We are all good at different things. Sometimes the things we are good at aren’t easily defined, tangible things. Sometimes it’s an emotion, a gesture, an artistic expression. Sometimes it’s a way we make someone else feel or even what we teach someone else through who we are. Because of this, outward “what we are good at” appearances can be deceiving. I have three kids. I know they aren’t all going to be brilliant at standardized testing, or athletics or music. But they are all going to be brilliant, just in their own way. And there is no “better than” or “best” when it comes to areas in which to show brilliance. All areas are equal. You know how I know this? Addison taught me. Because while I am good at thinking inside the box and judging based on perceived intelligence, Addison is really good at demonstrating outside the box how intelligence doesn’t always look how I once thought it did. Intelligence is a sneaky thing and it’s all around us in many different forms. Sometimes intelligence means struggling to communicate verbally and finding a million other ways to say exactly what she means. Sometimes intelligence means not following instructions, not because they aren’t understood but because she has a mind of her own and a will to explore. Sometimes intelligence means smiling and laughing hysterically over the smallest things because the value in the little things are comprehended without having to be taught. We are all good at different things.  Always look deeper than the first glance. Always assume there is more there. Search to find the “good at” in both sides of a situation where you are tempted to judge. Living with three children who are very different from each other, I feel like I have a first row seat to this life lesson. And sending a child with special needs off to kindergarten in the Fall, this is what I wish her kindergarten world would know. No, she won’t jump as high as the rest of her class in academics, or PE or even in feeding herself at lunch. But she is good at other things. Other things are just as important. You just have to care enough to notice. A version of this post originally appeared on Everything and Nothing From Essex. The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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.

Deanna Smith

What a ‘Cookie Incident’ Proved About My Kid With Down Syndrome

It took me a long time before I was willing to discipline my 5-year-old daughter, Addison. For the longest time, I wondered if she understood the action/consequence equation. So she used to get away with murder (not literally, of course, unless you count my white couch as a person.) That is, until the Great Cookie Incident of 2015. Location? Grocery store. Individuals present? Addison, my sons, Carter and Eli, and myself. Method of transportation? A grocery cart. Level of energy? Very high. Crime committed? Unkind hands (don’t laugh, this is a very real thing in my household). For a grocery outing with all three of my kids, I really couldn’t complain until Addison started smacking her brothers upside the head. At first, she only hit Carter, who was sitting next to her. He didn’t hit back. He just told me (quite loudly) every time it occurred. “Mommy, Addisie is hitting me!” “Sweetie, please don’t hit your brother.” But she didn’t stop. “Addison, if you don’t stop hitting your brother, you’re not going to get a cookie. A cookie. It’s the most prized award given to the wiggling child who somehow manages to sit in the same spot during the entire grocery shopping expedition. It is a highly coveted, much talked about thing at our house. Addison settled down for about 30 seconds and then started hitting and pushing even harder. “Addison. Stop. If you keep hitting and pushing, you’re not going to get a cookie.” Well, she didn’t stop. Furthermore, she started hitting Eli, too, until he started to cry. Lovely. Dozens and dozens of times she hit and pushed them, and each time I told her “no cookie” if she didn’t stop. I knew what I had to do. It felt mean and cruel, like I was the worst mother in the world, because I knew how she’d respond. Then I started waffling. Should I give her a cookie? Does she understand? If she understood, she would’ve stopped hitting, right? She loves cookies. She wouldn’t risk it, right? She’s acting like she doesn’t understand. Should I give it to her anyway because she doesn’t understand? Am I expecting too much? It came time. On this particular day, t he free bakery cookies were especially delicious. Large, soft, yet crunchy around the edges. I handed Carter a cookie and thanked him for obeying. I handed Eli a cookie and thanked him for obeying. I didn’t hand Addison a cookie. Addison held out her hand and said, “Cookie!” I knelt until I was eye to eye with her. “Sweetie, I’m very sorry, but you don’t get a cookie today. I asked you to stop hitting and pushing, but you didn’t stop. I told you that you wouldn’t get a cookie if you chose to keep hitting. You kept hitting. So you don’t get a cookie. I’m very sorry and I love you very much, but no cookie today.” Would the kiss I gave her be enough to ease the “cookieless” pain she felt in that moment? Not one bit. Her screams were intense enough to shake loose the entire display of cookies next to us. Gasping wails. Pitiful screams of “cookie, cookie, cookie!” My heart was breaking. Did she understand? Was I just being mean? I wouldn’t have thought twice about doing this for Carter. Her brothers happily munched their cookies. Tears streaming down her face, she stared at them and then kicked her screams up a notch at the unfairness of it all. I stopped to talk to her several more times, clearly laying out why she didn’t get a cookie and her brothers did. Her only response was to glare at me before pitifully sobbing once again for her cookie. And then screaming. When a woman in line ahead of us turned around to see who was screaming so loudly, I held my breath. Was she going to make a comment about Addison having Down syndrome? About me being unfair? But this wonderful person stared at Addison for a long moment, heard my quick explanation and said, “They have to learn. It’s hard, but it is the right thing to do.” A couple of hours later, Addison went to school. I’d been thinking about the incident all day. About how she plays me. About how I tend to be softer on her because I want to give her the benefit of the doubt. After her long afternoon at school, her bus ride home and a couple of hours playing on the deck, she was in the kitchen helping me make dinner. I decided to check in. “Addison, do you remember what happened at the grocery store this morning?” “No hitting. No pushing. Be kind,” she answered. “And what happens if you hit and push?” Her bottom lip quivered and she said, “No cookie. Hit, push, no cookie for Addisie.” The little stinker. No lack of understanding here at all. Although I do have to say I let my breath out after I felt like I had been holding it in the whole day until she repeated this back to me hours later. She did get it. I don’t know why I underestimate her. Some days I do better than others. No doubt it’s a combination of her being my first and me learning that all children do this to a certain extent. Down syndrome isn’t an excuse for disobedience or misbehavior, but the method of correcting and disciplining often trips me up because I always want to give her the benefit of the doubt. Walking the straight and narrow is hard work. Of course, there are things for us learn along the way. (I’ d say there’s as much for me to learn as there is for her.) This hitting/pushing thing has been a big battle. And the thing is, at times no matter how consistent I am with consequences, she does it again. And again and again and again. Which makes me think: Does she just not understand? But she does. Sweet cookie, does she ever understand. A version of this post originally appeared on Everything and Nothing From Essex. The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.

Deanna Smith

Is Down Syndrome a Promise of Happiness or a Curse?

I’ve been on this Down syndrome path for three and a half years now (including the prenatal diagnosis), and it’s interesting to me to see the two ditches that people often fall into when describing Down syndrome. Ditch #1 It’s a condition. It’s a curse. It’s a defect/mistake. It’s horrible. It will ruin your life. Ditch #2 Down syndrome is completely amazing! It totally rocks! It will blow your mind with awesomeness! It’s like dipping a unicorn in sprinkles and tying it up in a rainbow! I call them ditches because in my experience as a mother to a child with Down syndrome, neither of these is our reality with Down syndrome. Is it a curse? NO. Is it all smiley faces and glitter? Equally NO. Oftentimes I see parents combatting the very offensive Ditch #1 with Ditch #2, making life with Down syndrome seem over-the-top incredible, placing a beautiful quilted rug over the scratches on the floor, dimming the lights, lighting candles so that the harsh light of reality can be softened by edited pictures and carefully crafted sentences. It’s as if we’re all afraid if we admit it’s anything less than perfection every second of every day, everyone will assume we don’t love our children or somehow regret their existence. Looking back over my past three years of blogging, I’m pretty sure I can be accused of falling into Ditch #2 on more than one occasion. It was part of my journey. I started in Ditch #1, swung too far to Ditch #2 and slowly, over time, crawled my way out with a more objective view of this Down syndrome thing. I’m not here to accuse anyone of misrepresentation or call out blogs I feel are mostly hype, but I’m here to share with you what I’ve learned. I can’t speak for anyone else, but I live this reality every single day, and I wanted to share a few thoughts. 1. Down syndrome is. It’s not a poison working to ruin lives or something projecting fairy dust all around — it just is. It occurs in all kinds of families that all respond to the diagnosis differently, live with the diagnosis differently, look forward to the future after the diagnosis differently. No two individuals with Down syndrome are alike just like the families they are a part of are all different. To place broad stereotypes — either saying it brings sadness or happiness to a family — would be to stereotype hundreds of thousands of families and downplay how they choose to live their unique lives. 2. Down syndrome brings with it delays and health concerns. I feel like I share pretty realistically on my personal blog about our day-to-day with our daughter, Addison, but just in case you have missed those posts, let me say that Down syndrome is not always easy. Addison had very serious health concerns for her first year of life. She was in the NICU for five weeks (born full term), was on oxygen for nine months, was g-tube fed for five months, had two heart surgeries in six months and has been checked every few months for leukemia because she was born with a transient version of it. For the past three years, we’ve seen four therapists almost every week to help Addison advance to her next milestones. This has been a lot of work. It’s frustrating that she can’t talk to us. It stretches my patience to have to wait for her to do things/learn things because I want to do everything quickly, and she does everything at a much slower pace. I struggle with the fact that she is three but still isn’t as helpful/communicative/independent/able as a typical 3-year-old. I don’t care how rose-colored your glasses are; Addison’s special needs have been very difficult to deal with at times with no promise of an easy future. Low muscle tone isn’t going away. Speech difficulties will just become more apparent as she merges further into life. Developmental delays don’t have a catch-up date. To cover this with a pretty picture of constant happiness and cute puppy snuggles is simply not an accurate portrayal of Down syndrome. 3. Down syndrome does not take away from the fact that Addison is a little girl. When she was a baby with her many health concerns, it was hard to see past her diagnosis. It was hard to imagine her living past lying in the NICU attached to a million wires, so puffy that you couldn’t make out her features. And yet as she has grown past all of that, she has shown us a hilariously fun personality of a little girl who is obsessed with chocolate, books, pretty things, dogs, Signing Time and her papa. She is fiercely independent and has blossomed from the sick-looking rosebud from her early days into a gloriously beautiful red rose. 4. Down syndrome has taught (is teaching) me many life lessons. Compassion for those who are different from myself, patience, understanding, appreciation for different learning styles, loving not because it benefits me, but because in spite of this unexpected version of motherhood, love has bonded us. Enjoyment for little milestones becoming a big deal because of how hard everyone worked to get there, thankfulness for life, happiness in the face of difficulties, confidence in my family’s ability to overcome hardship, peace with today, contentment in the giving of myself to nurture another life. 5. Down syndrome does not define Addison, yet it is a big part of who she is. Oftentimes parents might choose to describe their children with Down syndrome by the physical features that set them apart. “Adorable squinty eyes,” “kissable flat nose,” “love the feel of lifting the body with low muscle tone out of the crib in the morning.” By doing this, I don’t think they’re highlighting the differences and exalting them to make them seem cool. I think those physical characteristics are so closely intertwined to who that child is that after a while as a parent you don’t see a difference. Addison is Addison. Her physical characteristics include very distinct markers of Down syndrome, yet she could easily pass for a twin of her brother, Carter. I’ve stopped thinking of her features as different and just part of who she is. If I mention them specifically, it’s just my way of describing my beautiful daughter. 6. Individuals with Down syndrome are more alike than different. But they’re also going to have different struggles, different points of triumphs, different paths of achievement. Can both be true? Over the past six months, Addison took a gymnastics class with her peers. Yes, she was more like those other children than different (a little girl wanting to have fun!), and yet she needed so much more help to learn proper behavior than any of those other children did. We had therapists meet us at class to figure out the best ways to help Addison do well. I wrote long blog posts of frustrations when it didn’t go well, happy posts when she achieved small goals. To put a “She’s more alike than different” Band-Aid over the experience would completely ignore the the extra assistance she needed to meet her other peers where they were at. I want the world to recognize that she is a beautiful 3-year-old enjoying life, but it’s also completely unfair to Addison to not acknowledge all of the extra work she has to put in to do this. 7. Down syndrome Addison brightens my life every day and makes me happier than I ever thought possible. It’s easy to assign blame or give credit to the genetic makeup of a person, but the truth is, Down syndrome isn’t what brings joy to our home. Addison is. Down syndrome doesn’t work hard to succeed in feeding herself, dressing herself and preparing for preschool. Addison does. Down syndrome doesn’t smile so brightly I think my heart might explode with love. Addison does. Down syndrome doesn’t have a streak for trouble as she steals food from her brother, hides toys, tears her room apart and refuses to let me brush her teeth. Addison does. Down syndrome doesn’t make choices for Addison. Down syndrome doesn’t pre-program a certain path for her. Down syndrome doesn’t determine that Addison will be a certain way. Yes, Addison has the genetic makeup of Down syndrome which brings with it some delays and struggles, but like any other girl she takes what she’s been given and lives according to how she wants to live. She makes choices. She chooses to laugh or cry. She decides whether to charm us or stubbornly stiff-arm us. To give Down syndrome all the credit for what Addison has brought to our lives is completely overlooking everything she has brought to the table as an unique individual. 8. Down syndrome does not warrant a death sentence. I’m not here to argue pro-choice or pro-life. I don’t think that is the issue here. The issue I’m addressing is when parents find out their unborn child has Down syndrome and they then choose to end the life because of the defect even though they badly want a baby. Medical professionals will feed new parents a line. Society will feed new parents a line. Friends and family who only know normal will feed new parents a line. Preconceived notions from past glimpses of differences will feed new parents a line. It’s easy to listen. It’s easy to think “they would be better off” to not live. In addition, you can read my reality of the health concerns, delays, frustrations,and uncertain future and feel justified. “ See!” You can reason with yourself. “She’s been through it already and she said that it is hard!” But the truth is that parenthood is hard. Life is hard. To admit things are difficult doesn’t mean I love my daughter any less. It just means I am honest about our journey because I respect you too much to lie to you. If you are in the experience someday yourself and discover the snuggly puppies bite, it helps to hear real stories of parents who have been there. Sometimes the things that are the hardest for us to do — the most difficult circumstances to live through — the most frustrating lessons that never seem to end are the things that shape us into who we were meant to be. And those things bring with it true happiness and contentment that never would have come our way on the easy path. I’m not saying Addison’s life is the most difficult thing, I’m just saying there have been moments along the way (health concerns, etc.) that fit that description. As the mother of a child with Down syndrome — as the mother of a child with Down syndrome who has had significantly more health issues than a typical child with Down syndrome — as the mother of a child with Down syndrome who didn’t want a child with Down syndrome — I still say with confidence: WORTH IT. Just because something isn’t easy doesn’t mean it doesn’t deserve our efforts. Addison is worth every bit of medical drama we had to go through to keep her alive her first year. Addison is worth every minute of the long hours of therapy appointments. Addison is worth our love even though it had a bumpy start (surprise diagnosis anyone?). Addison is worth fighting against social stigmas to help her live to her fullest potential. Addison is worth our time and effort into caring for her as a baby long past the time her age says she should be acting like a baby. Addison is worth life. I believe Addison was perfectly created by a sovereign God. I believe he then placed her in our family. I believe he has an amazing future ahead for Addison. And I am beyond thankful for her. She is my daughter. She is not Down syndrome. She is a little girl who has Down syndrome, living life to the fullest every day. 9. Down syndrome does not mean “stupid.” I’ve mentioned this before, but one of the physical characteristics of Down syndrome includes a small mouth which then makes the tongue seem oversized. This then lends to difficulty with speech. First of all, it’s more difficult to learn to talk and then when conversation is possible, speech might be slurred or difficult to understand. Because communication is difficult in this way, oftentimes it’s hard for individuals with Down syndrome to express what they’re really thinking. This is often misinterpreted as not understanding or comprehending. Addison struggles to talk. She signs mostly to us. Her spoken vocabulary is under 20 words at 3 years old. This makes it very difficult to know what she understands and such. But what I have learned so far is that Addison is freaking smart. She manipulates situations when she wants something. She devises schemes to turn things her way. She problem solves like no one’s business. And she does this all with very little talking. It might be easy for someone to make a rushed judgement when meeting Addison for the first time. But as someone who knows this little girl very well, I know better than to let her pull a fast one on me… again. 10.  If viewed realistically, Down syndrome should be overshadowed by a life. Down syndrome. It’s just a label. It’s not a life sentence. It’s not a promise of happiness. It’s not a promise of a certain outcome. It is a life. As Addison continues to grow and go through new phases of life, I know I will grow and change right along side her. I’m not saying I’m an expert. I’m not saying I’ve seen it all because I haven’t. I’m just getting started parenting a child with Down syndrome, and I still have so much to learn. I’m sure if you asked a different family in the Down syndrome world to make this same list perhaps it would look far different than mine because we’re all at different points in this journey where certain issues seem like a bigger deal to us than they would at other points. But there’s one lesson I learned early on that I plan to hold onto tightly through all the mountains and valleys still ahead of us.  I love my daughter for exactly who she is. I go back and forth between wanting to be a part of the Down syndrome community and wanting to just focus on my family and our normal. I don’t claim to be a big Down syndrome blogger because I’m just a regular ol’ mommy blogger posting snarky pictures and the day’s happenings. But every once in a while I read something that someone else has written that reminds me that if I don’t share at least one version of this reality, people will stay in Ditch #1 because Ditch #2 seems like a lie special needs parents feed themselves to keep the world from feeling sorry for them. Here’s to turning up the lights and seeing the whole picture. Here’s to celebrating differences, enjoying life and shaking off the glitter to take in the raw beauty of the truth underneath. This post originally appeared Everything and Nothing From Essex.