Family Portrait: The Wallace-Saals, Upper West Side

As a busy CBS News correspondent, Kelly Wallace realized her BlackBerry shouted louder and more often than her two children, Hattie, 4, and Lily, 2. Tired of racing to the newsroom to cover breaking stories, Wallace decided in April that it was time to take a breather. Encouraged by her husband, Matt Saal, an executive producer for The Rachel Maddow Show, Wallace left her job to spend more time with her kids—and work on an online news and talk show for mothers that will be hitting the web in the next few months.

How do the girls like having you at home more?
KW They love it. I’ve been able to watch Hattie at soccer practice and pick up Lily from school. I even chaperoned my first school trip.
MS And there’s less breakfast splattered on the walls. That’s a real plus.

What’s harder, being a news correspondent or a stay-at-home mom? 
KW Being a mom. As I’ve spent more time handling child-care duties solo, I’ve thought, this is the hardest job on the planet. At the same time, I want to have a vibrant work life. I know that as long as I can make my work fit into my life, as opposed to my life fitting into my work, I will feel fulfilled.

What can we expect from your new webshow?
KW It’s going to be a look at the top news stories affecting moms. The plan is to cover everything from whether pesticides on fruit and veggies cause ADHD to increasing desire in the bedroom. If mothers are talking about it, so will we. I hope this show will be a place where they can join a conversation and laugh a little. Because if we don’t laugh, how will we ever make it to bedtime?

You two are obviously news junkies. Do your kids ever watch with you? 
KW N-O. You never know what the next story will be. Are there going to be images of Haiti or violence in Iraq? As they get older, their current-events knowledge will only increase, thanks to us and their interest and questions—and we want and support that. But we’re trying to control the images—at least for now.
MS It’s censorship. It’s outrageous!
KW It sounds like we’re a communist regime. Hattie and Lily are going to be like, “Whoa, I didn’t know we had dictators in the family.”

What do you love most about raising kids in New York?
MS Hattie and Lily are growing up with the vibrancy and vitality of the city. They see all different kinds of people and every day can be an adventure. That outweighs hearing them say, “Where’s our backyard?”
KW My sister lives outside the city in a house with a big yard and Hattie’s been saying to me, “Mommy, how come we don’t have a yard?” And I say, “You have a yard. It’s called Central Park.”—Shandley McMurray

Our favorite…

SPECIAL OCCASION SPOT
“For dim sum, we go to Jing Fong (20 Elizabeth St between Bayard and Canal Sts, 212-964-5256, jingfongny.com) in Chinatown. It’s the best place to go when we want to celebrate with hundreds of our closest friends! We can’t get enough of the food.”

DESSERT PLACE 
“The pink-and-green chocolate cookies at the Hungarian Pastry Shop (1030 Amsterdam Ave between 110th and 111th Sts, 212-866-4230) are a household favorite.”

CULTURAL ATTRACTION 
“We adore the Children’s Museum of Manhattan (212 W 83rd St between Amsterdam Ave and Broadway, 212-721-1234). It’s our destination most winter weekends. How can you go wrong with an entire floor devoted to Dora and her friends, and another featuring a fire engine and an indoor sandbox?”

NEIGHBORHOOD HANGOUT
“We’re lucky to live near one of the best bagel shops in town—Absolute Bagels (2788 Broadway between 107th and 108th Sts, 212-932-2052). The folks behind the counter have mini-bagels ready for our little ones the minute we arrive. We head there early most Saturday and Sunday mornings.”

DINNER RESTAURANT 
“Our whole family loves the piping-hot, cheese-dripping pizza at V&T Pizzeria (1024 Amsterdam Ave between 110th and 111th Sts, 212-663-1708, vtpizzeriarestaurant.com). We enjoy the warm, neighborhood feel—locals gather there for hours over red wine—and the staff seems to ignore meltdowns.”

BRUNCH EATERY 
“Sure, Artie’s Delicatessen (2290 Broadway at W 83rd St, 212-579-5959, arties.com) is always crowded, but the kids like the grilled cheese sandwiches, and cookies for dessert. There are also plenty of great eat-quick choices for Mom and Dad!”

WARM WEATHER ACTIVITY 
“We pack up the stroller and trek to the wonderful playground in Morningside Park (Morningside Dr at 116th St), which has a spout-from-the-ground sprinkler. The soft rubber surface makes it relatively Band-Aid-free, and it also has varying levels of sprinkler action for kids of different ages.”

EXTRACURRICULAR ORGANIZATION 
Music Together (212-592-4627, gabrieletranchina.com/musictogether) is magical. The classes led by Gabriele are the most popular. She has a special way with the children, and her class becomes their most cherished activity each week.”

Originally published in Time Out New York Kids.

Places for kids to dress up in NYC


Little kids can live out big dreams in costume.

My four-year-old daughter, Marley, loves to play pretend. She puts on a princess gown as soon as she gets home from school. Her brother, Pierce, 2, also enjoys costumes—as long as they aren’t pink! We recently prowled the city in search of the best venues for G-rated role-playing.

Brooklyn Children’s Museum
My son bolted for the giant Chinese dragon head as soon as we arrived, stepping inside and roaring with gusto. Number two on his list: the Caribbean Carnival parrot costume, complete with flapping wings. His sister preferred the Global Beats Theater, where she tried on costumes from around the world. 145 Brooklyn Ave at St. Marks Ave, Crown Heights, Brooklyn (718-735-4400, brooklynkids.org). $7.50, children under 1 free. Wed 2–5pm free.

Children’s Museum of Manhattan
The firefighter costume box at CMOM’s Playworks exhibit earned a thumbs-up from both of my kids. Marley pulled on overalls and a coat, and Pierce grabbed a hat before settling into the driver’s seat of a bright red truck. On the way out, they visited ancient Greece, where Pierce tried unsuccessfully to wrapa piece of fabric to look like a peplos (Greek cape). 212 W 83rd St between Amsterdam Ave and Broadway (212-721-1223, cmom.org). $10, children under 1 free.

Eloise Shop at the Plaza Hotel
This new midtown store stocks all of the precocious troublemaker’s favorite things—jeweled tiaras, feather boas and plenty of girly ensembles. The mirrored, elevated space outside the changing room resembles a stage where Marley pranced around Eloise-style in a designer dress and Mascioni bathrobe—this is the Plaza, after all. All items are available for purchase, but the staff won’t pressure you to buy (your daughter, however, may be another story). 1 W 58th St at Fifth Ave (212-546-5449, theplaza.com)

Let’s Dress Up 
Marley and her two friends squealed in unison upon seeing the custom-made frocks, baskets of shoes and jewel-laden tables that fill this feminine paradise. (Note: There’s only a small selection of typically boyish outfits.) After decking out in royal attire, the girls enjoyed manicures and were treated to a tea party of cupcakes and pink lemonade. Marley has begged to go back every day since—and proudly displays a souvenir photo in her room. 345 E 85th St between First and Second Aves (212-879-0956, uppereast.com/lets-dress-up). $20 per person for a one-hour play session. Call for reservations.

Staten Island Children’s Museum
Almost every room of this kiddie institution presents another chance to dress in costume. Marley and Pierce donned snowshoes in the Arctic, mining helmets in the rain forest and scuba vests on the ocean floor. Pierce fell in love with a hard hat and wore it to man a wrecking ball. Marley, unfortunately, was disappointed by Portia’s Playhouse, a dress-up theater complete with backdrops, lighting and a TV on which to watch yourself. The reason: no princess dresses. 1000 Richmond Terr at Snug Harbor Rd, Staten Island (718-273-2060, statenislandkids.org). $6, children under 1 free.

Originally published in Time Out New York Kids

Why confident and empathetic girls are more likely to succeed

It’s no secret that BSS staff want their students to succeed. From the moment a girl enters Junior Kindergarten to the day she graduates, the adults around her (from teachers to counsellors) make it their business to support her in every way possible – academically, physically, spiritually, emotionally and socially.

“The philosophy of our school has really been around teaching the whole girl,” says Catherine Hant, Vice Principal of the Junior School. “We need to teach emotional and social skill development in the same way we teach spelling, adding, subtracting and multiplication.” A girl may be great at algebra, but if she can’t work well with others, organize her time or manage stress, she’ll struggle to do well overall.

Studies show that emotionally intelligent people (those who are able to identify and manage their emotions and the emotions of others) are more likely to succeed both in school and later in the workplace. A 2008 report conducted by the Collaborative for Academic, Social, and Emotional Learning in Chicago found that teaching students social and emotional learning skills boosted their academic performance by 11 to 17 per cent.

According to Tiia Birkenbaum, Student Services Counsellor at BSS, girls who have emotional intelligence are “more responsive to feedback, better able to deal with stress, overcome challenges, deal with failure, and manage their time and expectations.” In other words, they become well-rounded high achievers with impressive executive functioning (e.g., organization and planning) skills.

Another study, this one published in the April 2015 volume of the Journal of Advances in Medical Education and Professionalism, found a direct link between emotional intelligence and positive self-efficacy (a person’s belief in her ability to succeed). Once a person has a healthy balance of both, researchers found, she is more likely to flourish in school.

The BSS team has implemented a bevy of emotional teaching strategies, starting as young as Junior Kindergarten. In the Junior School, for instance, each grade explores one of the attributes in the Signature of a BSS Girl to help foster social development (everything from curiosity to self-awareness). Growth mindset is taught in Grade 3 and remains a constant theme throughout a student’s time at BSS. This concept (conceived by Stanford University psychology professor Carol Dweck), encourages a person to see difficulties as challenges instead of obstacles and helps her to “realize that [she] can do anything with hard work and perseverance,” says Junior School Learning Resource Teacher Marion DePiero.

Researchers of the 2008 study mentioned earlier found another key to emotional health is a feeling of connection. Ms. Birkenbaum strongly agrees. “When people feel connected to one another through mutual understanding and empathy, they are less likely to misbehave or treat each other disrespectfully.” That’s why the Junior, Middle and Senior Schools offer lunch-time clubs and the entire school participates in house-themed events like Crazy Sports Day.

To encourage friendships across grades, and ages, Grade 5 students help the Grade 2s with math and reading. Grade 6 girls create and lead events for Field Day. They are also responsible for organizing a food drive with the nearby Flemingdon Community. Helping others, Ms. Hant says, inspires students to “think about how they can develop reciprocal relationships with people outside of the community.”

In the Senior School, a few Grade 11 and 12 students become Grade 9 mentors (aka Lynx) to help ease the transition from the Middle School. “Lynx are friendly, helpful students who are ready to lend an ear, give advice, or just take a few of their ‘little sisters’ in Grade 9 out for lunch,” says Ms. Birkenbaum. Older girls also help younger students in a peer tutoring program, guiding them through homework after school. Those who struggle with organization or academics can attend study skills and other workshops put on by the Learning Resource Centre.

When bad things happen in students’ lives, there are plenty of resources to help. No matter if the issue is big (a death or divorce in the family) or seemingly small (a best friend who’s chosen to play with someone else), students are assured extra support. “Right from the get-go, we’re really emphasizing to parents the importance of partnership between home and school,” says Ms. Hant. “We have clear communication with all the people who interact with that particular student to talk through what strategies we are going to use, what language is appropriate. We might be pulling in our Chaplain,” she explains. If they feel the child needs further help, parents may be referred to an outside expert.

“Sometimes kids do get overwhelmed,” say Ms. Birkenbaum, “but we help them realize that this is a normal part of life
and remind them that they have the coping skills and support (parents, teachers, counsellors, Teacher Advisor Groups
(TAG), the Chaplain, Chapel dog, friends, siblings, etc.) that they need to get through challenging times.” Girls in Grades 9 through 12 meet weekly with their TAG advisors and are welcome to approach any teacher or counsellor with their worries.
In the Junior School, girls identify two trusted adults to support and guide them, says Ms. Hant. Some prefer to join the ever popular tea parties hosted in Ms. DePiero’s office. Here, students are encouraged to talk through their concerns with a member of the Junior School Learning Resource Department over a warm cup of herbal tea.

As Ms. Hant says, “it takes a village to raise a student.” The BSS village is progressive and close-knit, comprised of caring adults who want every student to know she is not alone.

Originally published in the Bishop Strachan School’s LINK Magazine.

10 ways to turn your pessimist into a positive thinker

“What was the best part about school,” Diana Stanwell* asked her 10-year old son, Miles*. “Nothing,” he grunted. “Come on,” she pushed, “there must be one good thing that happened.” “I didn’t die,” he shrugged before chucking his backpack into the trunk.

As an optimist, Diana sometimes struggles with the fact that Miles sees his glass as half empty. He is at the top of his class academically, has loads of friends and shines on the baseball diamond, but his constant negativity concerns her.

Luckily, there’s a bright side for Debbie Downers. According to a study in the journal Personality and Individual Differences, genetics only account for 25 percent of a person’s risk of becoming a pessimist. That leaves kids like Miles with a 75 percent chance to break out of their funks. And researchers have found that we can retrain our brains to become more positive. Here’s how:

  1. Listen and validate. When bad things happen, validate your child’s negative feelings, says Vancouver Psychologist, Dr. Erika Penner. “These are normal and typical emotions. We don’t want to promote the idea that the only acceptable emotions are happiness or positivity,” she says. If your son sat alone at lunch, try saying, “I’m sorry you were lonely. Let’s try to figure out why that happened.”
  2. Catch kids being good. Boost your child’s self-esteem by recognizing good behaviour. “[We tend to] pay more attention to kids when they’re behaving badly as opposed to when they are doing well,” Dr. Penner says. Congratulate good deeds so they can feel proud of their actions.
  3. Go outside! Slow down and have everyone take notice of things they hear, see and touch when playing outdoors. Kids will become more in tune with their environment and reduce stress in the process.
  4. Model balanced thinking. Children are awesome mimics. If you’re down on yourself, they’ll notice, Dr. Penner says. If you make a mountain out of a molehill, they will, too. Don’t be self-deprecating around them; and the next time you burn dinner, stay calm and say something like, “I’m frustrated that dinner is ruined, but now we can order in from your favourite restaurant.”
  5. Set achievable goals. Help your child set a specific and realistic goal. If she remembers to pack up her homework every night for a week, commend her for reaching her target.
  6. Talk about your day. Set aside family time to share the best and worst parts of the day. “It’s important to have kids feel safe when talking to you,” says Dr. Penner. “Sharing emotions as a family allows you to celebrate mistakes and challenges in the same way you celebrate success.”
  7. Focus on the positive. Have your child log a positive event or share something she’s grateful for. She can write it in a journal, tell you about it, draw a picture or record a voice memo.
  8. Find a personal strength. Encourage your kid to practise positive self-talk by finding one of his strengths and thinking about how he can use it to make himself or someone else happy.
  9. Pay it forward. “Our behaviour influences our feelings and thoughts,” says Dr. Penner. “Doing something good tends to make us feel and think better.” Pick flowers for an elderly neighbour or donate toys to a kid in need.
  10. Meditate. Have your child sit in a quiet place and breathe slowly in through her nose and out through her mouth. Ask her to think about something that makes her feel happy.

Be Positive, Live Longer

Several studies have proven that negative thinkers live shorter, unhealthier, more stressful lives than their more joyful counterparts. They are more likely to develop chronic conditions like coronary heart disease, diabetes and depression. “Negative emotions provoke an assortment of physiological effects that can be deleterious to health in the long term,” says Charles Carver, Distinguished Professor of psychology at the University of Miami.

Positive thinkers, on the other hand, live longer, healthier lives. They boast lower blood pressure, better weight control and a decreased risk of certain diseases. “Optimists have a more favorable balance of positive to negative emotions,” says Charles. “[They] believe that things will work out well.” As a result, they are better able to solve problems and deal with hardship and stress.

Originally published in ParentsCanada magazine, Winter 2017.

To my children, from your mother with Ehlers Danlos Syndrome

mother and two children at eilean donan castle in scotland

Dear kids,

My favourite part of every day happens long after you’ve fallen asleep. I quietly slip into your rooms and watch you doze. A smile creeps over my face as I catch sight of your legs dangling over the edge, your arms clutched tightly around a stuffed toy. I don’t pick you up and rock you back and forth as I would like. Sadly, my elbows won’t allow me to do that (and you’d think it was totally creepy). Instead, I slowly bend down (if my body will let me) and place a soft kiss on your warm, smooth cheeks. Some nights, when my back won’t allow me to bend, I kiss my hand and press it lightly to your cheek. When I struggle to walk, I hobble as close as I can on my crutches and blow my kiss in the air, hoping it doesn’t miss its mark along the journey.

As you both know, I suffer from hypermobile Ehlers Danlos Syndrome (hEDS). This is an invisible illness, which means I look okay from the outside, but inside my body is often screaming in pain. My joints are dislocating or subluxing (partially dislocating) and my tendons are tearing for no apparent reason. I can’t remember the last time I slept through the night.

People who pass me on the street would never know anything was wrong. If they saw me using my crutches or wearing one of my many braces (wrist, ankle, elbow or knee), they might think I hurt myself playing sports. They’d never guess that my body hurts in a way they couldn’t even imagine. When I tell them I can’t eat gluten, dairy or garlic, they look at me like I’m a high-maintenance snob jumping on the trendy-eating band wagon. They could never dream of the after-effects I suffer from ingesting these ingredients. When I say I have to sit down (because I feel like I’m going to be sick or faint from standing for too long) they roll their eyes in disbelief. I suffer from POTS (Postural Orthostatic Tachychardia Syndrome) as well, which means my blood pressure is super low and jumps by 34 beats as soon as I stand up, hence the dizziness.

I know it’s not easy for you – having a mom who can’t always play. I know there are days you begrudge the fact that you have to do extra chores around the house (like lifting the groceries, laundry basket and garbage). I know you hate taking the school bus when I’m unable to drive. Trust me, I hate these things, too; maybe even more than you do.

I hate having to opt out of backyard fun, balloon volleyball in the basement and board games at the table. I watch you ride off on bikes with your father and my heart literally aches with a longing to join in. What I hate even more than being a bystander, though, is the look I see in your eyes when I, once again, have to say “not today.” I see disappointment cloud your face even though you’ve tried so hard to hide it. I see hurt in your eyes as the twinkle quickly disappears. I’ve lost track of the number of times you’ve asked: “When will your arms get better? When will your hip stop hurting? When will your back stop being sore? Will THIS surgery finally make things okay so you can FINALLY play baseball with me?” You’re so brave when I answer as I always do, “I’m not sure, but hopefully soon.”

In my mind, my body can do everything we all want it to. It can run for miles, swim front crawl, throw a baseball and chase you during a game of tag. In my mind, my elbows allow me to brush your hair, pour the milk into your cereal and pick you up for a piggy back. In my mind I can always say, “Yes, let’s go play.”

In reality, most of these things are beyond my ability right now, but that doesn’t mean I won’t have good days where I can kick a soccer ball back and forth. It doesn’t mean I won’t push myself on the medium days to throw a baseball towards your glove, even if I have to pay for it with pain later. As for the bad days, of which there have been too many lately, I need you to remember that I love you more than you think possible. I may not be able to play tag on those days, but I can cheer you on enthusiastically from the sidelines. And no matter what type of day it is: good, medium or bad, I will always find a way to give you a goodnight kiss.

Originally published on The Mighty.

It took me 26 years to get diagnosed with Ehlers Danlos Syndrome

woman using walking devices and standing in front of large building

In the early days of our relationship, my then boyfriend (now husband of 14 years) would laugh when I stumbled during our walks. He assumed I did it to get closer to him. “You’re such a klutz,” he’d tease. As the stumbles became worse, his laughter turned to concern. We’d be out for a walk when my ankle would suddenly invert, the bone hitting the ground before the rest of me followed. Sometimes I could catch myself before the inevitable fall. Other times I’d hit the ground. Hard.

I have struggled with chronic pain, subluxations (partial dislocations) and dislocations since early childhood. I can clasp my hands together and skip using my arms as a rope. My shoulders move around so much they cause tears in my rotator cuffs. My right hip is similar, causing tears in my sacrum. My elbows are so painful that I can’t use my arms to lift the bed sheets off my body. You’ll often find me using a variety of aids – from wrist, elbow, knee and ankle braces to a sling, crutches or a cane to help me stay stable.

When I turned 20, new symptoms cropped up. Sometimes my heart races for no reason, leaving me breathless. I feel nauseous, sweaty and dizzy when I stand up from sitting or if I stand still for more than two minutes. I become bloated after eating even the tiniest of meals and consuming certain foods will cause me to vomit, have diarrhea and get horrible abdominal pains.

Sound like the musings of a hypochondriac? You’re not alone if you think that. Every doctor I saw for 26 years dismissed my complaints with phrases such as: “You look fine,” “You’re just a bit clumsy,” “Your x-rays are clear,” “your EKG is great” or “You have a touch of IBS. It’s nothing to worry about.”

I knew they were wrong, but didn’t know how to prove it.

Finally, a Diagnosis

My frustration continued until I was 27 and met a GP in Toronto who was able to finally fit the pieces of my medical puzzle together. After taking an extensive history and performing multiple tests (including asking me to place my hands flat on the floor while bending over with straight knees and pull my thumb back to touch my wrist) he diagnosed me with the hypermobile form of Ehlers-Danlos syndrome, also known as hEDS.

EDS is a group of multi-systemic genetic disorders that affect connective tissues (collagen, in particular). Like glue, these tissues provide strength and support to our skin, bones, digestive system, blood vessels and other organs. They also support the tissues (i.e. ligaments, cartilage and tendons) in and around our joints.

What Are the Symptoms?

Each affected person suffers with hEDS in a different way, but the following symptoms are common for many:

-Dislocations
-Subluxations
-Smooth, stretchy skin
-Chronic pain
-Chronic fatigue
-Gastrointestinal disorders
-Rupture of large arteries (this can occur in hEDS patients, but is more
prominent in the vascular form of EDS)
-Immune system complications
-Gynecological issues
-Autonomic dysfunction such as postural orthostatic tachycardia syndrome (POTS), which causes low blood pressure, increased heart rate, dizziness and fainting episodes

Who Gets It?

According to the Hypermobility Syndromes Association, hEDS is inherited and affects one in about 5,000 people worldwide. In a recent paper published in the American Journal of Medical Genetics, researchers claim, “EDS is likely the most common systemic inherited connective tissue disorder in humans.” They say hEDS affects 255 million people worldwide, 10 million of whom live in the US. That’s a huge number of people affected by a disorder the medical community knows little about.

How Is It Treated?

There is no cure for any of the Ehlers-Danlos syndromes. Since hEDS affects so many parts of the body, each symptom must be treated separately. Physiotherapy is important to strengthen muscles around the joints to reduce the risk of dislocations. I do special exercises daily and attend in-clinic sessions numerous times a month. In some cases, surgery is also advisable to repair (and possibly tighten) damaged joints. I’ve had four surgeries so far (one on each shoulder, my right ankle and my right elbow) with another to my left elbow on the horizon.

Altering your nutrition regimen can be beneficial for those with
gastrointestinal complaints and can help reduce joint pain and inflammation. I eat a special diet (high in salt and water (for POTS) with no wheat, garlic, dairy or leeks and little sugar) to help reduce inflammation and keep my stomach issues at bay.

Pain medications can also be useful, but it’s important to see a medical
professional to find out which meds work best for you. I’ve tried a ton (including celebrex, pregablin, diclofenac, hydrocodone, tramadol and lidocaine patches). None seem to work for me, but that doesn’t mean they won’t for others.

How Is EDS Diagnosed?

This past March, an international consortium of more than 90 EDS experts published new diagnostic criteria (for the first time in 20 years) along with management and care guidelines in the American Journal of Medical Genetics. Diagnosis includes measuring the hypermobility of multiple joints based on the Beighton Score, discovering an immediate family history of the disorder and finding widespread symptoms throughout the body, among other qualifications. Hopefully this new criteria and increased awareness will help prevent others from struggling for decades without answers.

Despite being told for years by doctors, friends and family members that my symptoms were nothing to worry about, I knew something was
seriously wrong with my body. Like so many others who have EDS, I felt frustrated, unheard and often depressed by my condition. Finally getting a diagnosis helped me to heal emotionally and allowed me to gain more knowledge about this disease so I could better manage my numerous symptoms.

As many who struggle with EDS will tell you, the worst part of living with an invisible illness isn’t the chronic pain, dislocations or exhaustion; it’s being made to feel as if your complaints are unfounded. If you think something’s wrong with your body, you’re most likely right. Believe in yourself and never stop searching for answers.

Originally published onThe Mighty.

The moment I decided to stop hiding my braces, slings and crutches in photographs

My sling, in full-view, during the moon rise at the beach.

It was a perfect night at the beach. The warm breeze tickled my face as I watched my two children chase each other towards the rock pier. My husband’s hand felt strong in mine as we walked through the soft sand. The moon rose slowly above the water, reflecting the sun’s rays as it sank behind us to welcome the night.

“Let me take a picture of you,” my husband said as he climbed into the lifeguard’s long-abandoned chair. Our daughter ran up and put her arm around me for the shot, nestling her head on my shoulder. “Don’t you want to take off your sling?” my husband asked before pushing the shutter.

Four weeks before this moment I had my second elbow surgery in four months and am still wearing a compression sleeve and sling while I recover. As someone wiith hypermobile Ehlers-Danlos syndrome (hEDS), wearing aids is not new for me. I often have a brace of some kind either on my body or tucked into my purse for emergency moments. Crutches and a cane live in an easily accessible closet in my bedroom.

While they may be a part of my regular life, I’ve always felt embarrassed about their existence. I hate the stares I’m given from passers-by and the unprompted questions I receive about my health from strangers. I hate drawing attention to myself in public and wearing a health aid makes hiding in the shadows impossible. Funny, since most of the time I feel invisible when struggling through the pain, nausea, dizziness and exhaustion that come along with my condition.

In my mind, I don’t need braces or crutches or slings. Although I live in constant pain and have frequent injuries and dislocations, I try to visualize myself without these aids in an attempt to feel more “normal.” When it comes time for someone to immortalize a moment, such as the beautiful moon rise that night on the beach, I quickly remove a brace before a photo is taken, hide my crutches or ask someone to take the picture waist-up to hide any tell-tale signs of an aid on my knee or ankle. I want my kids to look back on these photos and remember the moment and the place, not my illness.

During the six years I was lucky enough to live in London, we traveled extensively with our family, trying to make the most of our time overseas. We took photos everywhere – “from Bali to the Seychelles. Knowing we may never return to these incredible spots, I wanted to make sure we preserve them in photographs. In York, I hid my crutches behind stone walls. In Spain, I wore an air cast on my ankle, prompting photos to be taken from the waist-up. In the Seychelles I stood behind volcanic rocks to hide an ankle brace. In Italy, I hid my wrist braces under a coat.

family sitting on a big rock on a beach

When I look back at these albums now, I find stray photos that were taken before I had a chance to hide my aids, or I can see a crutch poking out from behind a kid who was purposely placed in front of me to hide it. It’s a bit like trying to find Waldo when searching through these memories. When I catch sight of a rogue cane, I remember the dislocation, subluxation or fall that led to the use of that aid. That is what I remember first. The beautiful Portuguese church behind it comes next; hence my desire to send my crutches into obscurity.

The other night, when my husband prompted me to remove my sling, he was doing something I had trained him to do – altering our memory to one that was more “perfect.” We all do it. Spend a few seconds on Facebook and you’ll see what I mean. It’s swamped with photos of happy, smiling families. Chances are, just before those shots were taken, one of the kids was whining, talking back or pummeling his sibling. The adult had likely downed a glass of Pinot to try to calm her nerves. Once those photos are posted, however, all we see is perfection.

As I looked at my husband, my iPhone gripped in his two strong hands, I realized I was sick of pretending to be perfect. I was tired of the effort it took to hide my aids. The weight of my daughter’s arm resting across my back reminded me that she, too, has hEDS, as does her brother. My habit of secreting away my aids might have taught my children to be ashamed of using the braces, crutches and slings they may need when they’re older. Instead of being reluctant to show off my aids, I need to be grateful that they exist; for without them there are days I would likely be stuck in bed, unable to walk far enough to see Big Ben, the Eiffel Tower or my son’s little league baseball game.

With that in mind, I readjusted my sling, pulled my daughter in closer, smiled and said, “Nah, I’m going to leave it on.”

Originally published on The Mighty.