Ichthyosis

Join the Conversation on
Ichthyosis
263 people
0 stories
50 posts
  • About Ichthyosis
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Ichthyosis
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Francine Mondi

    Why I'm Proudly Wearing Shorts This Summer as Someone With Ichthyosis

    Why do we as a society focus so much on hotness? Society has indoctrinated us into thinking that certain features are more attractive than others. The truth is, beauty is a social construct that often causes never-ending stress for those who do not fit the mold created by society. As we approach “hot girl summer,” I have been reflecting on past summers. Growing up with ichthyosis, a skin condition that causes dry flaky skin, and not falling into what is considered “beautiful,” I struggled for many years. I often wondered why all representations in the media of those with a visible difference were portrayed as “evil” or “gross” in movies and television. Characters with disabilities were treated as animals or less than. Since this was before the days of social media, I was left with a sense of hopelessness that I could never be loved or that I should be ashamed to be around “normal” people. These issues become especially hard in the summer when clothing is smaller and tighter. Also, because of my condition, I am at risk for overheating so that is always a major factor in the summer. I often found myself declining invitations from friends to do things because I was uncomfortable being ignored by strangers, or worse looked at like I was disgusting. I worried about being a burden if I needed to seek A/C and water. Besides a few close friends, I was often afraid to even talk about my condition because I did not want other people to feel awkward. I rarely wore shorts or dresses because I did not want to stand out, but the more clothes I wore in warm weather, the higher risk I was at to overheat. When I was 18, I was bullied so badly at college by my suitemates that I moved home after only two months, ultimately dropping out. College became a huge trigger for me, and I did not go back to get my bachelor’s degree until I was 33 and finished my degree at 35. Why do we fear that which we do not understand? Why can’t we empathize with those who look different than us? How does what I look like affect your life? As I have gotten older, after years of therapy, I have learned to love myself and my skin. I am no longer afraid. Having ichthyosis is a huge part of me. It has shaped my experiences and given me some incredible opportunities. Reframing my thoughts has opened my life and allowed me to enjoy things, rather than fear them. I am also a parent to a boy with ichthyosis and that is why I speak out in hopes of educating others, so he does not have to go through what I went through. I also want him to be proud of his uniqueness. There is nothing he cannot accomplish, and I hope his skin does not hold him back, the way it held me back for so long. There are two old sayings that I often think about when considering how we can change society and learn to be more empathic. The first one is “beauty is in the eye of the beholder” meaning beauty is not objective, it’s subjective, and what one may find beautiful may not appeal to another. While this is true, in my opinion, we can go one step further and we can learn to not judge others for what they find beautiful. We should learn to accept people of all shapes, sizes and colors. The second saying I often think about is “beauty is more than skin deep.” Who a person is and what they stand for is so much more important than how they look. Remember when you were little, your friends were kids who you had things in common with, and it didn’t matter what they looked like? We should all go back to that simpler time. Closed-mindedness and hate are not something we are born with, they are something we are taught. However, we can break the mold of our ancestors and change our thought processes. So as you’re enjoying this summer, do not judge those who are different. Instead, try to learn from their perspective. Who knows, you might just find a new friend. And if you are one of those people who are afraid that you will be judged by others, wear those shorts or that bathing suit. Live your best life and you will no doubt attract amazing people into your circle.

    Francine Mondi

    Why You Should Be Kind to People Living With Pain

    I struggle from chronic pain due to a rare skin condition and arthritis. I find my pain gets worse in the colder months, when the days are shorter and the activities are fewer. Recently, I’ve noticed that the worse I feel physically, the worse I feel emotionally. While many people consider me a positive influence, I’ve had a few people comment about how I make excuses to be “lazy” or I am being anti-social. I’ve had people berate me in parking lots because I park in a handicap spot. Truth is when my body is revolting against me, it takes all my energy to even make it through the day without crying. The physical pain limits my emotional bandwidth. I hide behind positive Facebook posts and text messages. I ignore the rudeness because if I tried to speak out, I’d break down. Fake it til you make it, right? I don’t like feeling this way. I don’t like spending days on end not being able to be there for my kids or missing out on opportunities because it hurts too much to move or getting harassed by strangers who think I don’t look disabled enough. This all plays a role in my emotional state. The longer I struggle with physical pain, the further I spiral emotionally. I saw a meme once that summed up things perfectly. It was a picture of a cactus in the shape of a couch and it said “living with chronic pain is like trying to get comfortable on a cactus sofa.” Think about that for a second. I have learned to cope with a life of almost constant pain. I have done a lot of work on myself to not let the bad days get to me, but sometimes it’s still hard. Don’t get me wrong, I love myself and my life. My ichthyosis makes me unique and I honestly can’t imagine my life without it, but in my darkest moments, I cry to be “normal.” My wish for 2021 is that people have more compassion for those in pain. Just because you cannot see their difficulties does not mean they aren’t hurting. You never know what someone is dealing with and a little kindness can go a long way in making someone feel better.

    Francine Mondi

    Hearing Comments on Your Appearance With Lamellar Ichthyosis

    This time of year is filled with so many incredible things, like pumpkin carving, apple picking, hay rides, trick or treating (although maybe not for some this year) — but for me, this is the only time of year when I hate myself and the way I look. Let me explain, I was born with a rare skin condition called lamellar ichthyosis. Ichthyosis is a genetic disorder that causes dry skin and scaling due to new skin growing more rapidly and shedding old skin too slowly. The condition is derived from the Greek word for fish. In fact, in some areas of the world, it is known as fish scale or fish skin disease. We also have what I like to call a “broken internal thermometer”. I often vary between extremely hot and extremely cold. People with ichthyosis are at higher risk of infections and overheating. If you think about it, our skin is our largest organ and controls so much of how we feel. So now that you know a little about me, let me go back to why I hate this time of year. Having a visible difference means everyone notices your disability. They make assumptions, everything from “were you in a fire?” to people thinking I have poor hygiene habits. This is not limited to the fall. However, during the time surrounding Halloween, the comments are definitely more prevalent and uncomfortable. Things like, “Wow, how’d you get your eyes to look like that?” Or “Cool costume, that skin looks expensive” is heard from the singular daily interactions I have with people. It has gotten so bad, there have been many years where I’ve hibernated for weeks until people return to simply ignoring me throughout their day-to-day life. Having to hide myself away and make up excuses as to why I wouldn’t be joining in festivities took a huge toll on my mental health. It took me many years to learn to love myself. At 41, I am still learning every day how my mental health does affect my physical health, but I digress. Why am I telling you this? I share this now because I want to remind everyone that commenting on a stranger’s appearance is not acceptable, even if you think something is “cool” or you are trying to offer assistance. It might not be what you think it is, and you may be reminding that person of a painful part of themselves. As a parent to two kids with disabilities, one of whom also has ichthyosis, I have had to put myself out there so they do not feel like they are missing out on the experience of Halloween. It is struggle not to pass my own insecurities onto my children. I have built up a thick skin (pun intended), but I am still human. The truth is, I cannot imagine my life without ichthyosis. The experiences I have had have helped define me as a person, but some days I just want to live my life without my skin being at the forefront of every exchange I have throughout the day. I promise you I have so much more to offer, all you have to do is start a conversation with me. We as a society put so much emphasis on the way people look. Why? When did we decide that how a person looks determines their worth in this world? Beauty is more than skin deep. I believe it is a person’s mind and soul that makes them worthy. My life has been filled with negative experiences, depression, anxiety, bullying — and I can pinpoint in every case how it started because someone said or did something relating to my skin that made me feel less than. Think about this the next time, before commenting on someone’s appearance. Is it necessary to be said? Do I need to be the one to say it? Am I saying it from a place of love? Honestly, I’d rather people ask questions instead of staring and assuming. People tend to fear what they do not understand; why is that? As children we are taught that kindness matters and we learn to celebrate all differences, yet when we become adults we often forget simple things like the golden rule of treating others as we want to be treated. So this year, please remember to be kind, and try not to comment on someone’s appearance. You never know what they may be going through. For more information on ichthyosis, please visit the First Skin Foundation.

    Community Voices

    Why Disability is Important to Diversity

    Visible Disability

    Every time you climb up a set of stairs, do you think about a person in a wheelchair? Okay, let’s take another step back, are you grateful that your body functions the way it does? Well then, you have the privilege of being able-bodied. This is not to say the people with disabilities are ungrateful about the way their body functions, it’s just to point out that you, as an able-bodied person, don’t have to think about taking a longer route if the shorter one involves a simple step or is steeper than what is considered wheelchair accessible.

    I was watching a ted talk from a Stella Young, and honestly, the way she described ‘inspiration porn’ is often time how I have looked at disability. At the end of her talk, she says something that strikes a chord with me and I’m sure many others. She says, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.” When I first watched the talk, I focused on the words ‘genuine achievement’ and I was wondering what a genuine achievement is. But, after watching the same talk now 3 times, I focus on the words, low expectations. Is it true that we, as able-bodied people, look at disabled people (those who are visibly disabled in particular) and don’t expect anything from them? Does that also mean that we are constantly in a state of expectations from people we see walking around?

    I think it is safe to assume that if I see a person who looks able bodied and someone in a wheelchair, I would expect the able bodied one to push me away from oncoming traffic while I would just think of the disabled person as being brave because they were outside. That is okay though. It is realistic to expect an able bodied person to do a little heavy lifting and it is okay to be happy to see someone living their life despite the issues they have had to overcome. I think what is not fair is that these issues are there, to begin with. I know how much I prefer taking the elevator, but, that’s just me being unhealthy.

    Invisible Disability

    Okay now that I have talked a lot about wheelchairs and functioning with a disability, let’s talk a little bit more about autism as well as an invisible disability.

    The medical diagnosis of autism is called the ASD or ASD. It is called a spectrum because there is a large variety of symptoms. In the DSM 5, the diagnosis is done mainly by observing a person. ASD symptoms include repetitive behavior, being more sensitive to stimuli, being unable to understand other people’s actions and more. None of this sounds like something the society would consider a benefit and call it bringing in diversity. The diverse part isn’t in the problems that they face though, it is in the amazing skills that they bring! People who have a functioning level of autism where their symptoms are limited, they are some of the smartest people seen in the fields of science, arts, and mathematics. They are also extremely strong visual and auditory learners.

    When we look past differences and issues, we see the beauty of their actions. Disabled people have managed to make disability secondary in their life and as Steall says, “Use their body to its full capacity’.

    This brings me to another story I recently had the privilege of listening to, the story of Nisha, a girl with ichthyosis. Her story was featured on My Indian Life a podcast from BBC World Service. This is one story that comes to me as inspiration and not because Nisha decides to live with her ichthyosis but because she has cracked the code of being happy regardless of the kind of discrimination she has had to suffer from. Honestly, I am yet to achieve that level of happiness and satisfaction.

    There are hundreds and thousands of stories of disabled people doing things just the way able people function. But that is the problem, we often get into us and them argument which only works to hurt the diversity of our community. It is about how we can work together to make the world an equitable place to live in not just for people who have to live with disabilities right now but also for people who will be born with a disability.

    Let’s start valuing what people have to bring to our effort of making the world a better place instead of objectifying them to make ourselves feel better.

    2 people are talking about this
    Community Voices
    Deborah Vilas

    Why Natalie Merchant's Lyrics Remind Me of My Journey With Illness

    “Doctors have come from distant cities just to see me. Stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders of God’s own creation. And as far as they see they can offer no explanation… Oh I believe Fate smiled at Destiny. Laughed as she came to my cradle. Know this child will be able. Laughed as my body she lifted. Know this child will be gifted. With love, with patience, and with faith she’ll make her way.” –Natalie Merchant I am not sure when I first heard Natalie Merchant’s song “Wonder,” but each time I do hear it, it resonates deeply with me and I feel incredibly witnessed and uplifted. In the early morning hours of my birth, the doctor gravely informed my parents that he had little hope for my survival. He actually discouraged my mother from naming me, in a misguided effort to help her accept the inevitable. I was born with a rare genetic skin disorder, congenital ichthyosiform erythroderma (CIE). I made my first appearance on Earth encased in a collodian membrane  -– a tight outer layer resembling plastic wrap, looking as my father loves to say, “like a shiny red sausage.” The doctors didn’t know what to make of me. They had no name for my symptoms, no explanation for my appearance. But their worry about my skin’s ability to provide a sufficiently protective barrier led them to believe I would not survive. I spent one month alone in the hospital, as doctors searched high and low for a diagnosis. Parental visits were discouraged. They finally suggested my parents seek an answer at a larger children’s hospital. My parents held me for the very first time in the back seat of the car, as their friends drove them the hour and a half to New York City. Another month passed before I was discharged, still without a diagnosis. The hospital cautioned my parents that the road ahead would be a rough one, and they highly recommended my family employ a full-time nurse to see to my complicated needs. My mother balked at this. “I’m her mother,” she said. “I am the only nurse she needs.” My diagnosis came soon after, when Dr. Charles Sheard, a dermatologist in Stamford, CT, observed that I had the same symptoms as one other patient he had read about in some “obscure” medical journal. Dr. Sheard took me on as a regular patient, seeing me once a week for the first year of my life, then monthly, and as I continued to grow and develop, annually throughout my teen years. He never charged my parents a dime. Although I suffered some complications and hospitalizations during childhood, my health stabilized and I have grown to live a full and rich life with few limitations. When dermatologists examine me now, they remark at the seemingly mild case of ichthyosis I have, compared to other patients whose condition greatly impacted their development, mobility, and appearance. I did, however, struggle with post-hospital trauma in the form of sleep disturbances, sensory issues, and severe separation anxiety. Then came the bullying in school. But I had several resilience factors at play in my life. I grew up listening to my parents tell me stories of my early health challenges, referring to me as a survivor and a fighter. My mother too was a fighter and fierce advocate for my medical and emotional needs throughout my growing years. It should come as no surprise that I decided to become a child life specialist as an adult, advocating for the emotional and developmental needs of children facing illness in hospitals and their communities. Natalie Merchant’s song “Wonder” reminds me of the miracle of my birth and life — how I surprised the naysayers, and how my mother saw the possibilities and joy in my birth more than the dire prognosis. To learn more about the many forms of icthyosis, check out the Foundation for Icthyosis and Related Skin Types.

    How I Find Possibilities Instead of Limitations in My Child’s Health

    Bags of chips and bottled water were sprinkled along the patio table and the cries of, “Watch me, Mommy! watch me!” were heard on repeat among the splashing. The summer heat crept above 90 degrees Fahrenheit, so we were glad to be in the only comfortable place outside: the swimming pool. I spent the afternoon with my son Connor and my daughter Brenna at our family friend’s backyard pool, and it is one of my favorite summer memories now – carefree hours of play and enjoying people we love. Kids jumping off the diving board and running around the yard, adults catching up. It was sunny and super hot, and I was so careful the entire time to make sure Brenna was comfortable and not overheating. But even though I was not oblivious to the ease of the others’ child care as compared with my own – very little concern beyond the application of sunscreen and the addition of puddle jumpers to chubby toddler arms – it did not evoke a jealousy stirring inside. I was more grateful than anything that we could be there, in the midst of it all. Participating. Joining in. When Brenna was first diagnosed with Harlequin ichthyosis – a severe, life-long skin disorder – instead of imagining a world of possibilities, it felt like a list of limitations began to grow. Because Brenna’s skin is very susceptible to infections, it seemed impossible to imagine family vacations at the bacteria-filled lake. Because her skin cannot physically sweat, it seemed impossible to think about hot afternoons watching her brother Connor in summer activities. Because her skin can be very tight and restrictive, it felt like any visions of sports, dance or gymnastics should be erased. But in the early months of Brenna’s life, as we adjusted to our newfound sense of normalcy in caring for her skin, we realized that we had a choice: we could adapt our life around this rare disorder… or we could adapt this rare disorder around our life. Rather than allowing the fear of what might happen stop us from trying new things with Brenna, we decided that we would push the limits. It begins not by saying, “Well, we can’t…” but by asking, “How can we?” The opportunity of each new experience becomes a challenge: if we truly want to do this, what might that look like? How might we be able to accomplish it? I know neither of my children will want to try everything, and I fully support and encourage that kind of self-awareness… the ability to weigh whether you know that you definitely have no interest in something, or whether you truly want to attempt a new feat, project or activity but just aren’t sure how to make it happen. I think one of the greatest gifts we can give our children, disability or not, is the opportunity to chase their passions and pursue their interests, even if those attempts end in what looks like failure. This often means getting creative. Sometimes this means packing up our entire trunk with both cooling products and clothing layers because we aren’t sure if the weather may become, at any point, too hot or too cold. Sometimes this means climbing up more playgrounds or bounce houses than I care to admit, just so that she can ride in my lap or hold my hand and get to experience the slides that the other kids are giddy about. And often, this means enlisting other people for back-up Maybe it’s more work and more effort, and often more stress, but it’s abundantly more joyful and exciting and empowering too. If nothing else, our experiences – both positive and negative – have pushed me to grow as a parent and encouraged me to not be held back by unnecessary fears of the “what ifs.” I’ve come to realize that often, we as parents tend to limit our children much more than our perceived limitations actually impede their lives. And it’s been incredible to see how the simple question of, “How can we make this work?” has transferred to Brenna’s attitude. The other day, Brenna slid out of her car seat and slowly crawled out of our minivan. In an attempt to save time, I started to pull her out and close the door. “No, I can do it myself!” she stopped me. I almost informed her that she wasn’t tall enough to reach the automatic button to close to sliding door, but I held back, waited and watched. Brenna leaned back into the van, balanced herself on the floorboard, stretched as far as she could and barely pushed the button, before sliding back out as the door lurched forward to close. It’s usually not the easiest or the quickest option – trying new experiences when working around a rare disorder – but in the last five years, we’ve seen that as we remind ourselves not to put unnecessary limitations on our daughter, she opens herself up to more opportunities as well. Hopefully because of these small efforts, we will hear those empowering words much more often in the future: “I can do it myself.” Follow this journey on CourtneyWestlake.com. We want to hear your story. Become a Mighty contributor here .

    When No Adults Stopped a Girl's Questions About My Daughter

    I saw her grandparents in their car before I met her. They were sitting comfortably reading while a couple of their grandchildren played down the path at the nearby playground. And so when we walked up that path to step onto the wood chips, there were no other adults around to hear the little girl — who later told me she was 8 years old — as she jumped from her swing to rush toward us and loudly declare: “That baby is really red!” The girl’s brother joined us, watching, and I couldn’t even smother a smile when my daughter Brenna defiantly responded, “I’m not a baby!” Truth be told, I really wasn’t in the mood to have an educational meeting at the park that day; I was just wanting to spend some time pushing my kids on the swings. But I explained, simply and quickly, that my daughter has a skin condition and that’s how her skin looks and this is how she was born… and I introduced both of my kids by name. And then I pointed to the little boy’s shirt, which bore the logo of the St. Louis Cardinals, and I said, “Oh, do you like the Cardinals? Brenna and Connor are Cardinals fans!” And both kids smiled for a moment, forgetting their original observations about Brenna’s skin. Within a few minutes, the little girl was back, next to us on the swings, asking more questions. Curious, not unkind, friendly, but persistent. “Why does it peel like that?” “Why is she so little? She looks younger than 4!” “Why doesn’t she have a lot of hair?” I answered them all, and I sprinkled in other conversation, too — how old the girl was, where she went to school, how she was in Girl Scouts — which then led to a discussion about our favorite cookies. Eventually, the questions ceased and the chatter became the typical playground conversations as more kids arrived. Later, on some climbing equipment, a new child approached the area, and the little girl spoke up quickly when she saw a glance Brenna’s way:  That’s how she was born; isn’t she cute? She looks like a baby, but she’s not!” Maybe being peppered with questions wouldn’t have been my first choice as I set out to spend the afternoon at the park with my kids, but as we left and told everyone bye, I couldn’t help but be glad that no one was around to pull that little girl away at the first question. Because not only did that little girl have her questions answered in a positive way, but she also got the benefit of the ensuing conversation. She got to hear Brenna tell her that her favorite Girl Scout cookie was the Peanut Butter Patties. She got to see her laugh and play and swing like any other child. She was able to learn that Brenna’s favorite character is Minnie Mouse, and that Brenna goes to school just like her, and that Brenna has a brother the same age as her brother. Not only that, but Brenna got an wonderful opportunity, too. Brenna was able to stand up and tell that little girl confidently, “I’m not a baby” and “That’s how I was born.” Brenna was given the chance to foster conversation instead of wondering, as in many other situations, why a potential new friend is being called away or dragged from her. It was the first time we had experienced curious questions with no other adult intervention. And when all was said and done, I was grateful that it was a good experience, hopeful that it was positive for both my kids and the other children. I have long believed that when we allow our children to learn about each other – using positive tone and respectful language — and remind them consistently that we are all so different, we encourage much more acceptance and appreciation for how uniquely we were all created. Different doesn’t have to mean strange or weird. Actually, different really is normal, because differences are a part of every single one of us. I believe our awe-inspiring Creator truly does mold beautiful masterpieces. A few weeks later, I took my kids back to the same park, and I saw that same vehicle in the parking lot. And that same little girl met us at the end of the path where the wood chips start. This time, she was smiling exuberantly. “You came back!!” she exclaimed happily. There were no more questions about skin differences. Only playful chatter about what 8-year-olds like to talk about. She had learned, and she had accepted. Now our differences made no difference to her; now we were simply new friends. This blog was originally published on CourtneyWestlake.com. We want to hear your story. Become a Mighty contributor here .

    Teaching Children to Be Kind to People With Disabilities

    The library in the downtown city was bustling the morning we stopped in to see a science show, and we were early. I sent my two children off to play while I browsed some books in the dinosaur section. I noticed a little boy approach my kids. He was wearing a t-shirt for a local daycare, matching several of the other children as well as some of the daycare teachers. I heard him ask about the appearance of my daughter, who was born with a severe skin disorder, and when my older son responded that she has a skin condition, the little boy asked another question. That’s when his teacher called him over and spoke in a low tone. I caught phrases like “don’t need to ask all those questions” from the short conversation. It was the kind of experience that happens quite often – a child questions my daughter’s deep-red, peeling skin covered in thick lotion, and then a parent or supervisor steps in. But this woman did something no one else has ever done. She got up and walked over to me. “I’m sorry he was asking questions about your daughter. I told him that we were all created differently and in different colors. I tell the kids all the time to see how I was made brown, and they have lighter or darker skin.” “No, it’s OK,” I told her, happy for this extended conversation. “A lot of kids ask about it. She was born with a skin disorder and…” The woman cut me off. “Now, honey, you don’t have to explain anything to me! We all look different!” Permission not to explain. Acceptance without explanation. The one thing that stands out from that brief encounter was that we don’t need to know. We don’t need to know why to appreciate someone’s differences. We don’t need to know in order to extend ourselves into connection with another. We don’t need to know about someone’s specific condition, or ability, or accident, or other circumstances to simply realize that even in our vast differences, we all share the sameness of humanity. I always prefer to educate about our daughter’s condition, called harlequin ichthyosis, and would much rather receive a thoughtful question than a stare or a judgmental comment mumbled under someone’s breath about “what a terrible sunburn” – which couldn’t be further from the actual truth of her rare condition, even though it may appear to be similar. But instances are vividly highlighted in my mind of times when others did not understand, nor did they question. They were simply kind. They seemed to assume the best, instead of the worst – believing that their curiosity about our daughter was not more important than her feelings as a person or our desire to enjoy an outing without being questioned about her appearance. Yes, knowledge is power, and I have seen firsthand that when someone understands something, they accept and appreciate it much more quickly and easily. But we don’t need knowledge to hold open a door for the person behind us. We don’t need knowledge to say hello, smile, and meet the eyes of someone who looks different than we do. We don’t need knowledge to give someone a heartfelt compliment or offer of help. And we don’t need knowledge to teach our child how to be respectful to everyone and consider the feelings of another. Knowledge can be power, but simple kindness is even more powerful. This article was originally published on CourtneyWestlake.com . Read more from Courtney in her new book, A Different Beautiful. We want to hear your story. Become a Mighty contributor here .

    What to Know About Staring When Parenting a Child With Ichthyosis

    These three words I hear at least weekly. I hear them at the park, at the museum, in the grocery store, at the mall. “Look at her!” Those three words exit the mouths of older toddlers, elementary kids, groups of teenagers, and even sometimes, unfortunately, adults. Those three words are directed toward my precious daughter, my four-year-old Brenna, who was born with a rare, severe skin disorder, ichthyosis, meaning her skin doesn’t work well and builds up too quickly, leaving her susceptible to infections, heat-intolerant and with an appearance that looks like a terrible sunburn all over her body. Look at her? Look at that child who looks very different than you? Yes, I want you to look at her. Look at her wide smile that stretches up as she laughs an ornery chuckle straight from her little belly that becomes infectious as you listen. Look at her. Look at her strikingly beautiful eyes that are the color of the Pacific Ocean on a clear day. Bright blue eyes that sparkle with joy and mischief, especially when she’s purposely bugging her brother or playing a game like hide and seek. Blue eyes that widen a little with anxiety every time she hears something about a doctor’s office or hospital because she is so worried about being poked with an IV or even getting her blood pressure taken. Look at her. Look at her dance to her favorite songs, twirling her dress or raising her arms to “Shake It Off.” Look at the way she immediately begins nodding her head and upper body to the beat if she’s sitting down and hears music of any kind. Look at her sing along, her sweet little voice trying to keep up with the lengthy lyrics. Look at her. Look at her determination as she tries something for the first time. Look at her thrill at she rides down the slide at the park for the first time or climbs a set of stairs for the first time, so proud of being able to conquer that exciting accomplishment. Look at her. Look at her as you listen, to those words of compassion coming out of her mouth as she asks why the little boy crying on the other side of the room is sad, or why the woman at the grocery store doesn’t feel well. Look at her. Look at her excitement about being at the playground, or the library, or even the store – wherever you are seeing her, she is excited to be there — to be around other people, to play with other kids, to experience something new in a social setting. Look at her. Look at the way she gives her parents a questioning expression as they explain to the fifth person that day that no, she was not terribly sunburned and yes, that’s how she was born. Look at the way she asks what’s wrong when her parents have to tell a nearby child to stop being unkind when they see him or her pointing and using words like “weird” or “creepy.” Look at her. Look at her tenacity each new day. It is often masked as pure four-year-old stubbornness, and is the kind of tenacity that makes her mommy feel relieved inside that she will give people a run for their money when she is older. A tenacity that offers her parents hope and expectation that she will stick up for herself and walk with self-assurance through the years. I can’t show you all of these things when you simply look at my daughter for the first time, most likely gawking over her peeling red skin, shiny from lotion. You’re not the first one to look, and you won’t be the last. But I hope that you know there is much more to Brenna’s story beyond your first curious glance. There is much more to this person in front of you than what you first see. So next time, whether it’s my daughter or someone else who appears different than you do, please look a little more. This post originally appeared here on CourtneyWestlake