Jeannie Ewing

@jeannie-ewing | contributor
Jeannie Ewing is a writer, speaker and grief recovery coach. She is the author of From Grief to Grace: The Journey from Tragedy to Triumph and co-author of “Navigating Deep Waters: Meditations for Caregivers.” Jeannie was featured on NPR’s “Weekend Edition“ and Tony Agnesi’s radio show, “Finding God’s Grace.” She offers her insight from a counselor’s perspective into a variety of topics, including grief and parenting children with special needs. For more information on her professional services, visit her websites lovealonecreates.com
Laura Riaz

The One Word People With Adenomyosis Are Tired of Hearing

Stress. It’s become somewhat of a buzzword in our society recently, which is a wholly positive thing as mental health is finally being recognized as important as our physical health. However, if you struggle with adenomyosis, a common but ill-understood chronic gynecological condition, you’re probably sick to death of hearing the word “stress” by now. It’s not to say that stress doesn’t have an impact on physical health, because it has been proven time and time again that the way we feel emotionally effects the way our body feels. But, if you’re dealing with an extremely painful long-term condition like adenomyosis, it isn’t helpful when this word is used as if it’s the miracle answer we’ve been looking for. My journey to diagnosis has been a long one. Struggling with chronic, debilitating pelvic pain from the age of 14, which developed slowly into a whole host of other symptoms — digestive issues, fatigue, dizziness, nausea, anxiety, excruciating periods and hip, thigh, back and leg pain — that I now know are all the symptoms of adenomyosis (sometimes shortened to “Adeno”). It took 10 years of being fobbed off by countless doctors, who all insinuated that my troubles were due to “stress” in its multiple forms. In my teens from exam and school stress; my early-20s from university stress; and in my mid-20s from life stress. Other women with adenomyosis and endometriosis (a similar, but different gynecological condition), will understand the frustration of being told your problems are effectively self-inflicted, even when we know this is not the case. I was diagnosed with an anxiety disorder at age 21 after I began experiencing panic attacks. I know now that the pains that preceded these attacks were actually my Adeno symptoms, with my body reacting to the severe pain with anxiety. I only received my diagnosis last year, after years of suffering and when the damage to my mental health had already been done. Years of not being listened to, of incorrectly prescribed antidepressants and therapy when the issue was not, in fact, “stress.” Since my diagnosis, I have only told a few people what’s been going on. And frustratingly, I was met by some people who used my favorite word again — “Are you sure it’s not ‘stress?’” I am the first to admit that being under any kind of emotional or physical stress exacerbates my symptoms, but exacerbates is the key word here. Stress is not the cause of my condition. I have not used the power of my mind to encourage the cells lining my uterus to grow into the muscle wall. What I want people without the condition to understand is, when you suggest that I’m unwell because of stress, it lays a heavy suggestion of responsibility at my door. That I’m somehow to blame for what’s happening inside my body. No matter how much yoga I do, how many herbs and supplements I take, how many hot baths I languish in, I will always have adenomyosis, until I’m old enough to have a hysterectomy. Yes, these natural remedies for stress are amazing, and I will always advocate for their use in symptom management, but the reality is, there is an underlying physical cause for my pain. This is not just a message to doctors, who don’t yet recognize the symptoms of Adeno, but to anyone who comes into contact with someone who is struggling with this condition. All we want is to be acknowledged and for our pain to be validated.

Jeannie Ewing

How Inspiration Porn Exploits Children With Disabilities

For years, I’d seen those memes on social media that showcased a toothy child in a wheelchair or a baby post-op, usually with the caption, “Is nobody going to ‘like’ or ‘share?’ This is my [son/daughter/cousin/friend] with [disability]. Help spread the love!” I’d mindlessly scroll past, momentarily thinking how endearing it was for people to notice our children and exert some semblance of positive promotion. But then I logged into Facebook, shortly before Thanksgiving a year ago, and my direct message inbox was flooded with images of Sarah as a baby that someone had lifted from our website and used — without my knowledge or permission — to promote their “share and like” campaigns. Shocked, I furiously checked these profiles, as well as the posts, and I was appalled to discover dozens of other photographs featuring nameless children with various disabilities — all for the same goal of reaching so many thousands of likes or shares. A friend of mine who had been researching such matters informed me there are websites in which random people can pay to turn their numbers of “share and like” posts into profits. It seemed clear to me that they were exploiting my daughter and her rare disease for their own selfish gain. What infuriated me all the more were the countless number of strangers who fell prey to the game: they shared and liked, tens of thousands of times! There were comments reflecting sympathy and pity, too. And I knew that likely all of these people were kindhearted and well-intentioned. But I felt sickened that anonymous names and faces could steal my daughter’s photo to elicit sympathy and earn money on the sly. Then I read the well written article Stop Spreading Inspiration Porn About Disability here on The Mighty. Written from the perspective of a person living with a disability, it shed so much perspective on how truly harmful these memes have become. And as a mom, my heart was shattered. I had never dared to fathom that a person would conjure such a scam. My innocent heart had posted photos of Sarah without considering the potential scandal that could erupt online. In the aftermath, people responded, “Well, that’s what you get when you post photos of your child online. Anything goes.” So there’s zero empathy from the perpetrators of the scams, and there’s little tolerance from family and friends, either. My explanation is this: I love my daughter. She is not defined by Apert syndrome. Her identity is far deeper than the surgeries and therapies and appearances. I have moved from shamefully hiding her as an infant to proudly toting her everywhere we go and snapping pictures along the way. As parents of kids with disabilities, we shouldn’t have to hide our kids from the world out of fear. Nor should we have to take down dishonest people who don’t realize the damage they are causing from spreading their “inspiration porn” online. People living with disabilities and their families do not want to be the object of pity or condescension. It is neither helpful nor kind to reduce any human being to a condition or disease or diagnosis. Labels help us find treatments and cures, yes, but we don’t use them to detract from the inherent dignity every person possesses and deserves. I hope Sarah can grow up in a culture that sees beyond her facial differences, and that people will stop categorizing others are superior or inferior based on intellect, race, religion, disability or socioeconomic status. We all carry the potential for greatness, but to place a person on a pedestal of sympathy is just as degrading and dehumanizing as ignoring or ostracizing them. Please, I implore you to stop the “like and share” campaigns by reporting any suspicious activity you notice online. Don’t share someone’s photo of their child without explicit permission from the parent or guardian. If you don’t know the person who is posting the meme, don’t like, comment, or share. It is possible for these “inspiration porn” posts to be removed, but it takes a mighty village to do so. With the help of our Apert family, we were able to get them all removed. It’s better to “like and share” a person, not a photo. Like the person’s traits and talents; share the gift of that person’s wisdom and life experience. Don’t reduce humanity to a fleeting image that may have lasting and damaging implications online. It is better to #choosekind by living a life in which you welcome everyone with warmth and hospitality than assuming you are being kind by momentarily exhibiting pity upon a total stranger. We want to hear your story. Become a Mighty contributor here .

Jeannie Ewing

Apert Syndrome and the Benefits of a Diagnostic Label

When my daughter was born 4 years ago with Apert syndrome, I never once looked at her as a syndrome. My husband and I were aware of the reality that she was different and would need extra help to reach her full potential in life, but we didn’t filter our conversations with others regarding her diagnosis. She was — and always has been — Sarah to us. I guess that’s why it baffles me sometimes when people shy away from labels or diagnoses. I’ve had recent conversations with those who tell me they’re glad their son/daughter hasn’t been “labeled” because that means they won’t be viewed as different. But I beg to differ on that. First of all, everyone notices when someone is different. It’s just human nature. Our first response to someone in a wheelchair, with a speech impediment, who uses leg braces or, as in our case, has a craniofacial condition is to think, “This person is different.” To be clear, this does not mean we necessarily put a judgment on that reality. We are merely acknowledging the truth that there is likely a diagnosis of some sort, and it’s neither good nor bad. Why is ignoring a diagnosis desirable to some? I understand the principle behind such a theory, especially when it comes to dealing with a society that isn’t exactly open to accepting people who don’t fit the “normal” bell curve. But I can attest to the fact that labels can help, rather than hinder, a person’s overall quality of life. I marvel at the milestones Sarah is able to reach because we know and understand her rare condition. My husband and I have studied Apert, discussed the genetic mutation and consequence with her geneticist, and have gotten to know other Apert families. I personally have become friends with some adults with Apert, which has enriched my life in unimaginable ways. All of these have contributed to how my husband and I better, more deeply understand what Apert does to the body and brain, or at least has the potential to do. Again, we don’t put our daughter into a proverbial and stereotypical box. We don’t categorize her or talk to her as if she were a medical diagnosis. In fact, I have not met anyone among her team of specialists, physicians, surgeons, and therapists who have done this. Every conversation, every surgery, every encounter deepens our understanding of what has affected Sarah’s little body and how we can best help advocate for her. Without the Apert diagnosis, or “label” as it were, Sarah may likely not have made it beyond her first year. If we never sought to understand what she was born with, we wouldn’t be aware of those critical skull surgeries that must be done before the brain becomes too enlarged for the fused skull during infancy. I can’t imagine remaining ignorant on such a vital, life-changing issue. So, you see, labels have changed our daughter’s life. They have changed our life. Sarah is and always will be first and foremost a person. Her unique dignity is never lost upon us. We know she isn’t defined by her diagnosis, yet it is very much a part of her journey. She is still very much a typical child. Not long ago, our oldest daughter, Felicity, was asking some questions during lunch about why Apert syndrome makes people’s hands and face look different — an innocent question. Sarah proudly declared, “I don’t have Apert syndrome!” It was a moment I realized that, despite the myriad appointments, exercises, and ongoing medical care she receives, she’s never received the message that she is merely a label. Labels can save lives. Labels can educate. Without labels, how would medical advancements reach their peak? How would scientists properly research different conditions so as to make surgeries less risky and more efficient? And how in the world would we, as a family, ever have known or met other people who have similar craniofacial conditions? Without labels, without diagnostics, we would be lost, and we may not have Sarah with us. You see, life extends beyond labels, but I am grateful for them — not because they have created a vacuum in which we exist but because they have allowed us to understand our daughter as she tells us her story. Life unfolds differently for us all, and thankfully, human dignity has not been compromised for Sarah because of her diagnosis. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Ingram Publishing

Jeannie Ewing

Apert Syndrome Diagnosis: What Doctors Don't Tell You

When Sarah was about 2 weeks old, we took her to see the geneticist for the first time. I was still in a postpartum stupor, barely able to comprehend the madness of diagnostic tests, blood draws, and specialists thrust upon us. The office door beheld the title of our region’s genetics specialist, including “genetic counseling.” Breathing a sigh of relief, I honestly believed we might receive a bit of compassionate care. To my dismay, we were handed a copy from an old medical textbook that dryly listed every bodily system and how Apert syndrome affects each one. I could hardly breathe and hold back the tears as Sarah’s geneticist smiled and said without hesitation – and certainly with no empathy – “See you next time!” As soon as I sat in the car, I burst into tears. You see, Apert syndrome may include unique characteristics that are defined and treated by the medical community. Of course, my husband Ben and I saw the results of her genetic blood test, which confirmed the genetic mutation of her chromosome. But medical textbooks and jargon cannot begin to encompass all there is to this elusive disease. The doctors couldn’t tell me that Apert syndrome would be both rewarding and challenging, that I would learn more about myself and life because of it than through any other means. Who could prepare me for the moments of exhaustion and elation? The fleeting days leading up to a major surgery and the anxious, sleepless nights post-op? The world cannot predict a tidy existence, and so it is with Apert syndrome: There is nothing predictable, certain, or tidy about it. Despite this fact, Apert syndrome can be a tremendous gift. It’s all because my daughter is a gift, and her life matters in this world – as do all human lives. Once I realized there would be no universal, cut-and-dry treatments for everyone with Apert syndrome, I panicked. My background in counseling reared its head as I desperately attempted to piece together the pathology and how to respond to it. But because Apert is so rare, the statistics do not exist about general care for each person. Then it hit me: We are each unique to begin with. No one, regardless of diagnosis, can be stuffed into the proverbial box of stereotypes. Even the medical community, who (bless their hearts) were doing their jobs well by seeking out the pathology and treating it, lost sight of that. So, shortly after I threw the medical textbook copied page into the trash, I adopted the slogan, “God is bigger than statistics.” I knew we would have hurdles with Apert. I understood emerging problems might develop over time that didn’t appear at Sarah’s birth. But it no longer halted me with fear. Instead, I made a decision to simply live in the present moment and tackle whatever was to come at the time it arrived. No longer a slave to fear, I realized I needed to listen to what the experts said about Apert, but I also needed to maintain a secure sense of interior peace – unwavering strength that would quiet my spirit when fear so often pushed its way into the forefront of my psyche. No one can predict with 100 percent certainty what will become of my daughter, or anyone else’s child for that matter. Some may pity us for the life we were handed, but I no longer wallow in it. As Craniofacial Acceptance Month draws to a close, I ponder the facts and figures we were told at Sarah’s birth. In many ways, she has exceeded the medical community’s expectations. In many ways, she is thriving. But I do not rely on either hope or fear to get me through her lifelong rare disease. Instead, I enjoy what’s been given to us – here and now, today.

Jeannie Ewing

Learning to Accept Your Child's Apert Syndrome Diagnosis

The first two weeks after Sarah’s birth, I was swimming in a sea of denial. It was so deep, however, I denied my denial. Every morning I would wake up and wonder, “Maybe this has all been just a bad dream.” I prayed she would be healed of Apert syndrome. I asked our lives would resume to a steady, predictable rhythm rather than the chaos and uncertainty that often accompanied it. For a time, it seemed maybe Sarah would just need a few surgeries, and then we could start a “normal” life — a typical life devoid of surgeries, pre- and post-op appointments, paperwork, phone calls, more paperwork, bills and therapy sessions. Then one day, it hit me that Apert syndrome was here to stay. No, it wasn’t a flash of the proverbial lightning bolt that jolted me into this reality. Instead, it was like a quiet acceptance settled upon my heart, and at last, I was OK with the fact that Apert was going to be a lifelong companion. Jeannie’s daughter. I was sitting in the waiting room while Sarah was in her weekly occupational therapy session. Lost in my thoughts, it occurred to me that I no longer viewed Apert syndrome as an unwelcome intruder. I didn’t immediately think, “Apert” when I saw my own daughter or others like her. Instead, I was beginning to see the person behind the diagnosis, the beloved face of my daughter. It was a revelation that swept me into an oasis of relief, and peace settled upon my soul. Life with Apert syndrome isn’t so unnerving or daunting when one can allow it to be the constant presence of a friend. I won’t say Apert is the kind of friend I’d choose, but since it arrived in our lives and is here to stay, I’m learning to see it as more of a comrade than enemy. Jeannie’s daughter. It’s really a matter of perspective, as is anything that is difficult or uncertain in life. We can choose to view challenges as obstacles, or we can learn to see them as opportunities. Sarah isn’t aware she is “different”; she only sees opportunities. Sarah doesn’t know she has Apert syndrome yet. Everything she’s experienced in her little life of three years has been typical to her. She doesn’t know what it feels like to have fingers that move with ease. She has no basis of comparison for her shorter arms or cute little fused toes. Her body has become her haven, and I’ve learned to see it that way too. I think we all have to remember that every human being is in some way, different. When I was a kid, I was called “four eyes” because of my coke-bottle glasses. I then earned the nickname “brace face” when I adorned those lovely metal braces on my teeth. I grew up hating the fact I was seen as an anomaly among my peers because of my introversion and “ugly duckling” appearance, but now that I have a daughter who is visibly different, I am proud of the little girl I once was — who was shy, awkward, afraid of herself. Living with Apert syndrome as a friend, rather than foe, means I see myself differently. I am no longer ashamed of being different, because I know how beautiful each person’s gifts are to the world. One person may be prodigious at empathy, while another is perceptive mathematically. One may be a musical phenomenon, while another has a brilliant engineer’s mind. Even mundane tasks, such as sweeping floors or organizing shelves, can be done with incredible joy, contentment and finesse. Apert syndrome has taught me there is no such thing as superior or inferior when it comes to people. There are no menial jobs or talents, because even small things can be done with great love. That’s what living with Apert syndrome reminds me each day – that love is the essence of this life. Perhaps Apert has become more of a family member than a friend lately, because I’ve moved from accepting it to thanking it for what it has taught me and what lessons it has to offer the world, too.

Jeannie Ewing

The Difficult Questions When Parenting a Child With Apert Syndrome

Apert syndrome isn’t pretty to most people. The “ugliness,” of course, isn’t about physical appearances – not to me, anyway – but rather, it’s the “ugly” things people say or do, or maybe don’t say or don’t do. It’s ugly because it’s messy. There are no clear delineations of prognosis or even progress at times, and the myriad of surgeries and post-operative care can wreak havoc on anyone. What’s toughest, though, is when people don’t acknowledge my daughter, Sarah.  My daughter is one of the most extroverted people around. She’s always walking up to total strangers, offering her signature grin and cheerfully greeting them with, “Hi!” Most people are at least polite and return the salutation, but many then start to walk away. Sarah doesn’t let people off the hook that easily, though. She’ll follow them (and I after her), asking questions like, “Whatcha doin’?” or “What’s that?” When people scurry away and ignore her, that breaks my heart – no, it shatters my heart into a million fragments. She doesn’t understand their response, but I do, because I used to be one of them. I used to fear people who looked different, because I didn’t know who they were, what to talk about, how to look at them, or even what to say at all. The truth for all of us is that we fear what we don’t understand. I think that’s why it’s so hard to talk about Apert syndrome with strangers or acquaintances, and on the rare occasion, even close family members or friends. It’s because the questions themselves seem to be enshrouded with fear. What will happen to him/her? How do you handle ‘XYZ’? What if…? We then trail into our own territory of terror, because we don’t know. We don’t have all the answers. There are aspects of Apert so nebulous, statistics don’t even exist to demonstrate patterns or predict outcomes. So, we allow people to walk away without the impact of knowing just a little bit more than they did before they met our son or daughter. It’s hard to talk about the fear of death, because it’s always a looming possibility.  Oh, I realize we all die, and there’s no way to know when or how any of us will leave Earth. But with Apert, it can happen any time. Most of us are fairly tight-knit in the Apert community, so we always hear when an Apert kiddo passes away. And it terrifies us to the core. We think, “That could be my child. It might be one day.” But most of the time, we file those “ugly” thoughts to the back of our minds, because we’ve had just about enough of ugliness in our lives – the words and stares, the brutal surgeries that leave bruises and scars on our precious children, and the glaring message from society that our kids are different. So the fear of how others might react if we actually verbalized to them, “I’m scared my child might die unexpectedly” is an unfortunate reality. We don’t pretend everything’s OK all the time necessarily, but we certainly aren’t always ready to be emotionally transparent to someone who may rip open our hearts again and again. It’s because we live with a bleeding – or at least bruised – heart to begin with. It’s a jarring vulnerability, reminding us no matter how typical we may secretly (or openly) wish our life would be, Apert syndrome is the ever-present, prevailing mystery and unwelcome visitor. So we live with the visitor, and it becomes our companion in an odd way. But it doesn’t negate our fears – or the fears of passersby. I think anything that’s hard to talk about is related to our innate longing for acceptance and happiness, which aren’t guaranteed when ongoing challenges are present. Regardless of who we are or what we fear, we must start the conversations, however difficult they may be. We must answer the questions, regardless of how uncomfortable they are. And we must learn to be content with the questions themselves, not always grasping in desperation for answers that may never arrive. Yes, Apert syndrome can be a mystery, but it can also be an adventure. My sweet Sarah is proof of this. I cannot imagine the world without Sarah, or people like her.  The world needs different, because — as we all know well in the Apert community – different isn’t ugly. It’s beauty in disguise.

Jeannie Ewing

Letter to Parents of Children Diagnosed With Apert Syndrome

Maybe you’ve known about Apert syndrome for a while and have been slowly preparing yourself for your child’s arrival. Perhaps it was unknown to you prenatally, and you were completely taken aback when your child was born with the features of Apert: mitten hands, fused toes and a misshapen head. Either way, life has been forever changed now that your son or daughter has officially received the diagnosis, and you need that lighthouse as your beacon right now. First of all, breathe. It really is going to be OK. That’s not just a worn platitude I’m saying to calm your nerves. It’s the truth. Having a child with Apert syndrome isn’t easy, but the journey gets better because you change.  Your attitude changes. Your perception changes. Everything about Apert will shift from a burden to a blessing. And, at some point down the road, you will see your child rather than the diagnosis. That alone is cause for your joy, and when it happens, you won’t know it right away. But when you look back on your journey, you will smile to yourself and tell another new Apert mom or dad, “Hey, someday it’s going to be OK.” That being said, you need to know that you aren’t alone. The Apert family is ready and eager to welcome you into its fold. Trust me, I know, because everyone I’ve been privileged to meet in this community has become my family at the heart level. In many ways, they will be more family to you than your blood relatives, not because your relatives don’t genuinely care about what you are going through, but because they can’t possibly understand what it’s like. But your Apert family does. They are moms and dads, kids and grandkids, adults and seniors. They are friends and mentors, counselors and nurses, healers and advocates. You will need them. Cling to your Apert family. Start as soon as your child is born, or shortly thereafter. Oh, I realize it seems to be the worst possible time to make these connections, but they will be your lifeline when, out of nowhere, you feel suffocated and confused, angry or overwhelmed.  Your Apert family is there to listen, share, offer prayers and advice (but only when solicited), and they will rally with you. They’ve been there. Grasp their strength when yours is depleted. Find in them the courage and encouragement you need to keep moving forward – for your sake and the sake of your child – because there will be days when you have none. And on those days when life seems to be wasting away and you have no idea how you will make it through, do not give up hope.  It seems flimsy and clichéd to say such a thing, but believe me, I have been there. I have been in the pits of darkness with this disease, because it is so mysterious, but hope is what I cling to when all else fades away into oblivion. Hope will be your reason, your breath, your focus. Keep it at the forefront, and you will be able and willing to confront whatever may come – good or bad. And the bad will come. Don’t dwell on it, but expect it. Allow it to be in the back of your mind, because it’s a reality. But when the bad arrives, remember that “this, too, shall pass” and “all will be well, and all manner of things shall be well.” These are not meaningless words. They are truth, and they will guide you through the murky waters of caregiving. The bad days or weeks or months will remind you of the goodness that still exists, somewhere, in the midst of the struggle, and then you wait for the good to return to you. The good times will not last, either, so don’t ride on the hope that “this time, things will be different,” because they won’t. Wait until another surgery hits, and you will find yourself near despair if you live according to the fallacy that goodness lasts, too.  The key to acquiring peace in the throes of Apert syndrome isn’t so much in riding the wave of good or bad days and months, but it is in living in the present moment and finding even small blessings in each day. Your child is a blessing and a gift to the world.  Do not allow the world to tell you otherwise. There will be people who pity you, but don’t allow yourself to become a victim. There are enough victims in the world to fill it. What you must choose is victory, knowing it will not be achieved without struggle and pain. But your child is far from the burden others believe s/he is. Remember that. Relish in his/her laugh. Enjoy the moments you share together in unbridled joy. They may be few or many, but they are treasures and will contribute to expanding your heart far beyond imagination. Finally, remember life is a journey. No one else can live it for you, nor can you live someone else’s. We are not meant to judge and be judged, but it still happens. Be OK with that. Be aware of who you are – warts and all – but without labeling yourself or anyone else, especially your child.  Labels destroy. Your journey and your child’s journey are meant to be lived to the fullest – tragedies and triumphs together. If you live well, you will learn to love well along the way. And that is what matters above all else. Find out more about Apert syndrome support by visiting these online communities:Apert Syndrome Awareness,  Apert International (Apert USA), Apert.org. June is Apert Syndrome Awareness Month. Spread the word and get educated to #choosekind! The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

Jeannie Ewing

5 Times It's Better to Say Nothing at All to a Special Needs Family

As a mom of two girls with special needs, I’ve heard some doozies from well-intentioned people who are trying to assuage the challenging reality of caregiving. I’ve come to understand that people generally don’t know what to say when they learn something difficult about someone – chronic disease, a medically fragile child, an ailing parent with dementia, etc. While they want to say something in response to their discovery, they aren’t sure what will be helpful. So they likely blurt out something they’ve heard before – a cliché – that they believe will bring you comfort and encouragement. The truth is, there are moments when I feel it’s better to say nothing at all than any of the following: 1. “Remember to count your blessings, because there are people who have it much worse than you do.” I think many of us who are facing illness, ongoing grief, or caregiving have heard this one more than once. We may know there are people who have greater hardships than we do, but it’s hurtful to hear someone completely deflect the reality of our current frustrations. Sometimes we may just want a listening and empathetic ear rather than this logic. In fact, guilt can quite possibly trickle in when we hear this, and that’s not something we need more of. 2. “I’m so sorry to hear about your son/daughter’s diagnosis.” The first time I heard this, I was completely taken aback. I think what startled me was that my first thought was, “ But I’m not sorry.” Naturally, I never wanted my children to face the challenges that come with sensory processing disorder or Apert syndrome or any other diagnosable disease. But when someone told me they felt pity for me because of my daughters’ diagnoses, it stung. I don’t want to elicit sympathy, since I’m grateful for the opportunity to raise such amazing girls. 3. “Special parents get special children.” On the flip-side, this statement is equally as frustrating to hear as the previous one, though their meanings are entirely opposite. While I do feel that my children are incredible gifts, I do not believe I am anybody “special.” I’m an ordinary mom. I think telling a parent who has a child with special needs that they must be special negates the truth of the matter: that sometimes there are flukes in life, irrespective of who we are. 4. “Don’t worry. Everything will be fine.” This platitude seems to be the go-to moniker for anything that might cause worry, sadness, fear, anger or frustration. People who say this may not realize how hollow it sounds, even though it can seem to be a perfect way to end an uncomfortable conversation. The truth is, none of us has any way of knowing if everything is going to be fine or not, and I feel it’s unfair and insulting to presume that what we’ve shared will somehow magically end up rosy. 5. “I don’t know how you do everything. I could never do all that you are!” Here’s the deal: Yes, I believe you would do everything I am doing if you were in my situation. We do all that’s possible and available to help our children reach their potential. Sometimes that means making huge sacrifices. In my mind, this is simply called love. You do more than you think you are able to do when you love someone wholeheartedly. BONUS: Don’t mention your problems and say you can relate. The “one upper” is always a delight, right? I have people tell me how worried they are about their child’s symptoms, or that they were just diagnosed with a rare disease themselves, or that they totally understand what I’m going through because… I believe no one can know what someone else is dealing with. We can empathize (and I feel we should), but we cannot claim to know what life is like for them. Sometimes people find a list of “dos” helpful when they aren’t sure how to navigate s pecial needs situations. I happen to think a list of “don’ts” is equally valuable, because most people genuinely want to be consoling and encouraging. The problem is that few people understand when it’s best to say something and when it’s more appropriate to simply listen with concern. Every time I’ve shared with other moms this unofficial list of “don’ts,” they tell me how relieved they are to know what may be offensive for me to hear. I tend to tell them I think difficult life circumstances seem to warrant more silence than speaking, and it’s best to err on the side of caution rather than say anything at all. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Jeannie Ewing

To the Parents of Children With Special Needs: I Want You to Realize This

Dear Parents of Children With Special Needs, You are not invisible. I see you every day when I’m doing ordinary things. You, too, are often immersed in the mundane: mingling with the rest of the world at the grocery store, taking a walk in the park, running errands and attending church. I see you clearly, like the crisp dawn after a hazy winter’s evening. I watch your hidden heroism, which I know you wouldn’t claim for yourself. It’s an awkward, uncomfortable title because you do what anyone would do for their children, after all. But you don’t know that I notice you because I’m one of many among the crowds of people surrounding us in this bustling world. I look up from my list or book or hymnal, and I know the weariness you wear in your eyes. I see the worry on your face and the joy in your heart. Your patience, tenderness and loving care as you fold wheelchairs, adjust tracheostomy tubes and quietly redirect socially inappropriate comments often carry me through the drowsiness of my days. I see you and your actions of charity, and I’m humbled as I slip away, unnoticed by you. I want you to realize that you live and walk among many other people who notice you and are changed by your unspoken witness of love. Not everyone will have the opportunity to tell you they see you, you’re doing a fabulous job and that you — and your children — matter. And yet, they will think it, internalize it and be forever changed because of something you don’t even know you’re doing. You return to your homes, sometimes discouraged and drained, and you wonder if the small — and exemplary — things you do each day truly make a difference. You might feel isolated, alone and often frustrated at your inability to relate to typical families. But your child has abundantly blessed your life beyond measure (and countless other lives, too), and though life is tough, you wouldn’t change anything about it. The truth is, you have learned that the greatest, most rewarding and satisfying aspects of your life are those fraught with sacrificial love. The fruits of your sacrifices are gleaming in the light of your child’s eyes, in the kind comments of your other children and in the gestures of thoughtfulness and chances you give other parents and children to love you and your child. I know this profoundly, but how? I know you fleetingly, and yet you only know me by a smile or subtle nod as you resume your daily activities. But I will never forget you. You remind me of what kind of parent I aspire to be, how much more I hope to give to my children and how much less of myself I hope to possess. I know this because I, too, am a parent of children with special needs. Sometimes the roles are reversed, and I’m where you are now. Sometimes I’m out and about with my children, doing typical and routine activities. And sometimes I return home to the same things you do: laundry, dishes, an unkempt house and mountains of chores. I do this without thinking, and yet — perhaps — there is someone out there who saw me with my daughters, too. Perhaps they noticed in a hidden way, and yet their hearts were touched by what they saw. Please know that despite the often brutal cruelty with which you may be met at times, there are many more people who acknowledge your sacrificial love and the joy that supplants transitory happiness. They may not say anything to you because they haven’t been given a chance, or they aren’t sure what to say, but they will never forget you. They, too, may have a story of caregiving of others. You will remind them of this but in a fond and delicate way. You are not forgotten, and you are not invisible. You are the heroes and heroines of our modern day, and your children are the superheroes because they rescue us from a false sense of self that is rooted in narcissism and apathy. They sweep in to jolt us awake from our drowsiness, our bitterness and our busyness. And then they — and you — lance our hearts with a love that supersedes any material wealth, pleasure or comforts we could possibly acquire. Thank you for your hidden heroism, your constant love and your quiet virtue. The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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.

Jeannie Ewing

5 Ways I've Changed Since Becoming a Special Needs Mom

I wrestled intensely with my daughter Sarah’s diagnosis after she was born. My prayers were initially desperate bargaining, such as, “Please heal her,” or “Please take away her syndrome.” It wasn’t that I didn’t love Sarah. I just didn’t want her to have a difficult life, and more selfishly, I didn’t want to have a difficult life. Sarah recently turned 2. As she has grown into “toddlerhood” her unique personality shines more and more brilliantly. And I have come to realize my prayers have changed. I no longer ask that she will be normal or typical because I cannot imagine Sarah to be anyone other than herself. While her syndrome does not define her, it has become a part of her. I now thank God for the gift of Sarah — Apert Syndrome and all. What’s more, I was recently humbled by the admission that I have changed because of Sarah. These five points are not an exhaustive list but only the beginning of how I’ve noticed I am different and changed. 1. Patience. Anyone who even remotely knows me as an acquaintance, let alone my closest family members and friends, will readily acknowledge I have a short fuse. I’ve never been a particularly patient individual, and I can’t say I ever really wanted to be. But due to Sarah’s unique development, I have developed a sense of waiting without restlessness. There’s an inner calm that resides in me as we venture into new territory with evaluations, specialist appointments, fittings for orthotics and pressure garments, new surgeries, diagnostic tests, etc. Patience has flowered in my heart since I’ve had Sarah. She has shown me to be angry and in such a hurry all the time is counterproductive. 2. Simplicity. An increased reservoir of patience has definitely led me to a deeper appreciation of simple moments and blessings. Because our family doesn’t fit into the typical mold, we do not savor the same types of luxuries most American families do — annual vacations, leisurely weekends or exquisite material possessions. Instead, we’re enriched by a 10 minute walk to the local park where we watch our girls swing gleefully and run around together for unbridled moments of pure childhood play. These are the moments, seemingly minuscule and definitely fleeting, that enrich my life. I covet them because they happen so seldom. Yet if I’m careful, I recognize the small gifts each day presents to me — a short note from a friend, a hearty and healthy meal and laughter shared with my family. I have been given all I need right here, right now. 3. Generosity. Here’s another virtue I sorely lack by nature. I’m the only girl in my family of origin, so I never had to share much of anything — my clothes, a bedroom, my toys, even my time. Over time, I grew to be an egocentric young lady who matter-of-factly wanted to do whatever I felt like. Sarah’s presence in our family has expanded my heart so I think of my children and what they truly need from me (not want). Generosity means I am more capable of letting go of my time and to-do list in lieu of playful spontaneity with my daughters. Generosity also means I am willing to extend myself not just to my family, but also to others when they are in crisis or dire need of assistance and support. A generous heart, I have learned, is an open and magnanimous heart. 4. Sacrifice. Along with selfishness, I have never been keen on offering up my personal comforts in order to assuage someone else’s pain. It’s just difficult for me to do this. But when Sarah was an infant she was so little and helpless in my arms. I knew immediately I could not forsake her needs due to my unwillingness for discomfort, both emotionally and physically. Sarah has taught me there will be long nights and exhaustive waiting in surgical areas at hospitals, numerous irritating phone calls with the insurance company and even more detailed conversations with specialists, therapists and physicians. Sacrifice entails an intentionality of surrendering one’s physical or emotional comforts for the sake of love. And love, I have found, is not in what I can get from everyone else around me. It’s what I give — and give freely at that. 5. Acceptance. I’m not speaking of tolerance here, but rather a tranquil indifference to whatever the outcome of various medical or social concerns about Sarah. It’s also accepting her mortality, as well as my own, and making the short time all of us have on Earth count. Acceptance means my ability to say it’s OK if I don’t have all the answers to my questions. It’s entering into the mystery of life knowing there are far more enigmas than there are cut-and-dry solutions in life. If I look in retrospect, I’m ashamed at the person I once was. Having two daughters with special needs has opened my eyes and my heart to the suffering of others with far greater afflictions than what our family has to bear. I no longer ask, “Why me?” Now I see limitless possibilities through the lens of hope. 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 .