What Moms of Kids With Invisible Disabilities Want You to Know

Parents of kids with invisible disabilities want the world to know it’s only okay to assume one thing: They and their kids are doing the best they can.

While some disabilities demand recognition via a wheelchair, hearing aid, or portable oxygen tank, others are more subtle, but that doesn’t make them any less real. Known as invisible disabilities, these affect 96 percent of people who have a chronic medical condition according to one estimate. Caring for a child with any disability presents extra challenges. For the parents of kids with invisible disabilities, those challenges often include the misperceptions of their communities – including friends, family, neighbors, and teachers – that are uninformed at best and hostile at worst.

I talked to moms of kids with invisible disabilities including Autism Spectrum Disorder (ASD), Avoidant and Resistive Food Intake Disorder (ARFID), hemophilia, and many others, to find out what they wish more people understood about their experiences. Here are some of them.

Sensory processing issues are not discipline issues

According to the American Occupational Therapy Association, sensory processing affects virtually all aspects of a child’s daily life, including motor coordination, school performance, and relationships. A child with sensory processing disorder could have 20/20 vision and perfect hearing, but when he’s in a crowded mall, his brain is not able to manage all of the auditory and visual information he’s receiving through his eyes and ears. While each kid reacts differently to overstimulation, some will scream or become physically aggressive. What may look like defiance is just a kid doing his best to manage a stressful environment. The assumption that a lack of discipline indicates a failure by the parent is totally without merit. Here are few of their stories.

Jaime has a five-year-old son with level one high functioning ASD. She says, “Discipline will not prevent him from being overwhelmed by his environment.”

Lainie Gutterman, the mom of a seven-year-old boy with ASD agrees. She says when her son is having a meltdown, “Staring, pointing and offering your two cents is not helping the situation and will most likely cause my son or myself to feel worse and [his] behaviors to escalate.”

Similarly, Jennifer Lynn, whose son has ADHD, wishes people understood she’s not being rude or indulging her children when she leaves a party abruptly. “It’s just that we see the warning signs and are trying to help our kiddo avoid a meltdown.” She says events like family gatherings or vacations, which are fun for most people, “are stressful for our family because it’s just too much everything.”

A little compassion goes a long way

Regardless of their child’s diagnosis, virtually every mom I talked to described the pain of receiving judgment instead of compassion. Sarah Cottrell, whose son has hemophilia, is tired of challenging people’s assumptions about his diagnosis. She says, “He doesn’t have AIDS and hemophilia isn’t caused by incest. Enough with the wild theories, because we need compassion and empathy for the unseen pain issues and unending fear and anxiety over covering his insurance.”

Most parents I talked to, particularly those of kids with sensory processing disorder, described organizing their days around their kids’ strict routines. Every parent understands how easily the best-laid plans for meals, naps, and bedtimes can implode. What many parents don’t understand is how much higher the stakes are when your special-needs child depends on predictability for a sense of safety.

Lisa Rosen, who wakes up 90 minutes before her kids in order to prepare for the non-stop mental and physical energy her son requires, says, “When adults look at my child, they see a happy kid…. But I know that if one thing is off in our routine, I’m dealing with Hiroshima.” Her son Ezra, age three, has sensory processing disorder and is speech delayed. According to Rosen, something as seemingly minor as the smell of a classmate’s detergent could cause him to melt down to the point where she must carry him out of the classroom – regardless of whether she’s carrying her 15-month-old baby as well. She describes her family’s disappointing absence of understanding when she couldn’t attend the funeral of a family member due to a lack of childcare coupled with Ezra’s regimented schedule and complex needs. “Who knew compassion was so difficult to come by?” she asks.

The predictability some kids require doesn’t just extend to schedules and environments, but also to food. Brianna Bell and Jennifer Gregory each have a child with sensory processing disorder that makes them intolerant of many foods. Because of this, Bell hates sharing meals with friends. She says, “There is so much pressure from others for her to eat this and that and not be so picky. I feel rude bringing my own food but she starves if I don’t. And people just don’t understand and assume she’s spoiled.”

Gregory asserts that her family frequently eats separately. She serves alternative meals and allows screens at the table, and this works for them. She wants people to understand that for her family, “Mealtime is chock full of stress and anxiety and the goal is to get food into our son’s belly because he doesn’t eat enough. If an iPad distracts him from smells and texture and allows him to eat more, so be it.”

Parents described not only a shortage of kindness from other parents, but also from other children. Lisa Beach recalled her son’s adolescent years as being particularly isolating. He is now 20 and has Asperger’s. Beach’s advice to parents is simple: “Teach [your] kids to reach out and include rather than label and judge.”

Just because you can’t see it doesn’t mean it’s not there

When a parent is struggling to find a diagnosis, pay for therapies, or just get through the day with a kid who has an invisible disability, it is not helpful to insist nothing’s wrong because their kid looks so “normal” or that her IQ is so high. What may be intended as a compliment may come as a slap in the face to the parent who has committed precious time, energy, and money to her child’s disability.

Samantha Taylor’s 13-year-old has high functioning autism, generalized anxiety disorder, and an eating disorder, while her ten-year-old has dysgraphia and anxiety. Although Taylor is open with her friends and family about her kids’ diagnoses, because they appear “normal,” she says people are often shocked when her kids say something inappropriate or react in a way that is out of proportion to the situation. Says Taylor, “While it might look to everyone in our lives that we are holding it all together, I worry about my boys every single day. I wake up thinking about what I can do to make their day easier, and go to bed wondering if I did enough.” In search of a supportive community, Taylor ended up creating a thriving Facebook group for moms of kids with special needs.

One mother (who prefers anonymity) describes feeling frustrated when people judge her for coming to her son’s aid. He is in his early 20’s and has high functioning Asperger Syndrome. While she may appear overprotective, that is not the case. She says, “High functioning individuals are acutely aware that they are different and sometimes have self-confidence issues. Shaming them for needing help is not productive and can contribute to anxiety and depression. Thoughtless comments can sometimes ‘undo’ progress that has been made.”

You’re an advocate

Parents of kids with invisible disabilities are not just responsible for feeding, clothing, loving, disciplining, and teaching their kids. They must also advocate for their kids in a system that does not always have their best interests at heart.

One mom, who preferred to remain anonymous, described the challenge of having a 12-year-old son who has ADHD and a learning disability. She described his teachers’ low expectations, recalling an Individualized Education Program (IEP) meeting where a teacher was clearly impressed with her son’s “C”, “and how great that was ‘for a kid on an IEP.’” To compensate for his teachers’ low expectations, she says she always reminds her son that “[he] is smart and his IQ reflects that. There is no reason he shouldn’t be able to get an ‘A’ … if he is provided with the right services.” She also described a general lack of understanding of her son’s ADHD diagnosis among his teachers, which she feels causes them to set unreasonably high expectations of him in other areas, such as his ability to get organized or follow a schedule.

Delaina Baker, whose son is dyslexic and has auditory processing disorder, described similar struggles with her son’s school. She says she wishes teachers were more accommodating of his IEP. Says Baker, “It is my right to fight for my child and if you challenge my knowledge of his disability, I can assure you, I’ll have a spreadsheet, charts, and back-up data to prove it.” She says she is grateful to have found an ally in her son’s Exceptional Student Education (ESE) coordinator, whom she feels is her son’s only advocate beside herself.

Parenting is hard enough without adding other people’s assumptions to the equation. Parents of kids with invisible disabilities just want the world to know that it’s only okay to assume one thing: They and their kids are doing the best they can.

The Determination of the Tiniest Fighter

They told us that our contact with you needed to be limited to a short hold a day. They said you couldn’t handle being out of your incubator for too long.

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They told us not to think the worst when we didn’t hear a sound. They said a baby of your gestation wouldn’t have lungs developed enough to cry. That tiny, determined cry as you were pulled from deep within me is etched in my mind for the rest of my life.
They told us you wouldn’t be able to breathe by yourself. They said you would need a ventilator until you got stronger. I can so vividly recall watching your tiny lungs, fighting hard to push out breaths by themselves, under your paper-thin skin.
They told us that our contact with you needed to be limited to a short hold a day. They said you couldn’t handle being out of your incubator for long periods of time. I held you, skin to skin, tucked down my top, your tiny little head resting on my chest for hours at a time.
They told us that you were too early to know who we were. They said you didn’t know I was your Mum. But I know that you turned to me when you heard my voice, that your heart beat slowed when I held you, that when I looked into your eyes, there was a connection.
They told us that you would need to be tube fed as you were so early. They said you were not yet at the stage where you would have mastered sucking, swallowing and breathing all at the same time, that these skills were mastered in the womb. I remember watching you in awe as you drank your first sip of milk from a bottle, your tiny mouth barely big enough to take the teat.
They told us it was unlikely you would breast feed. They said that I could try and nurse you for the comfort. For six weeks I pumped for hours a day to have the milk ready for you when you were strong. I knew you were a fighter and I knew you could do it. I was right.
They told us you would be in special care until your due date at least. They said they had not let a baby as tiny as you leave the hospital. Four weeks before your due date we carried you out of that hospital. At six weeks you weighed under four pounds.
They told us that there was a chance your development may be impaired. They said you might experience delays and to look at things in terms of your adjusted age. By 12 months, you had not only caught up with any developmental milestones, you were ahead of them.
My tiny little fighter, beating the odds from the moment you entered the world. A world you shouldn’t have been in yet, a world you fought so hard to stay in, a world that you weren’t ready for, but thrived in all the same. I know you will continue through life with this same desire and determination to succeed. My little fighter. Don’t ever stop fighting for what you want.

A Mother's Proclamation About How This Day is Going to Go

Today, we will get out of the house. This will be no easy feat, but we will get out of the house.

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Today, we will get out of the house.
This will be no easy feat, as I will need to dress both of you while you are fully committed to this riveting episode of Paw Patrol. It will be like attempting to tug clothes onto an angry octopus, or actually, like trying to dress two fighting octopi that can’t keep their tentacles to themselves.
But we will get out of the house.
I must pack enough snack rations to feed an entire small town for a week, even though we’ll only be gone for a couple of hours and you just ate your weight in muffins at breakfast. And I need to make sure I have exactly the same number of banana applesauce pouches for each of you. Strawberry applesauce is obviously not acceptable.
And you, my dear daughter, must go potty. I realize this is a 42-step process, and that you will shout “I pooped!” just as I am trying to wrangle your brother to the ground, pinning him down with my body weight so I can change his diaper. But we can do this. We must.
And then we will be ready – hooray! Dressed, bag packed, faces (somewhat) clean, hair brushed. We will just need to find your shoes and socks and put them on. Easy-peasy, right? Yes, I know we are missing one of your gray socks with blue whales, and that it is nearly impossible to go on living without it, but we will prevail.
Despite all of this, we will get out of the house.
We will figure out a way to get in the car, even though you will each insist that I buckle you into your car seat first.
We will go to the library to return our overdue books and pick out new ones, even though you, my sweet son, will sob, your little face scrunched in rage, because I have the audacity to insist that I hold you while we cross the street.
After the library (where one of you clearly will not respect the quiet rule), I will – despite my better judgment – take you to the bakery next door for a donut. You will argue over who gets the bigger half (news flash – they will be exactly the same size). You will coat every square inch of your face, the table, and the floor with cinnamon sugar.
But today, I will get out of the house.
Here is a list of things I will not do:

  • Fold the load of laundry that’s been waiting for me in the living room for three days.
  • Clean the kitchen, which may be reaching health code levels of dirtiness.
  • Spend any measure of quality time with my husband.
  • Clean out the back of my car, or finally take those clothes on top of my dresser to Goodwill, or do our weekly meal planning, or write, or go for a run, or take a nap.

I will not do any of those things today.
Some days I wonder – what am I doing with my life? Am I achieving enough? Am I reaching for my dreams? Am I doing anything really worthwhile? And importantly – will these kids ever sleep? Will my house ever be clean again?
I am often tired and frazzled, overwhelmed by how much you need me and by my inability to do it all. But I do know deep down that it is all okay, and that nothing lasts forever – not even these days, which are messy, mundane, and maddening … but also magic if I am determined enough to pay attention.
Today, I will get out of the house. I will take you to the park. I will watch as you play in the sand, giggle your way down the slides, and shriek with joy while you chase butterflies. I will push you on the swings, one hand on each of your little backs. I will raise my face to the warmth of the sun and be grateful.

Winning the Battle, and the War

I never pictured that love would entail holding her body immobile so we could help her by hurting her. It was an act of faith and determination to endure.

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!

When Marigold was two months old, Pat Benatar became my own personal manifestation of determination.

It had nothing to do with Pat Benatar herself. I still don’t even know what she looks like, frankly. But in the dead of night, sobbing over my child who could not, would not latch onto my breast properly, body aching, feeling like a catastrophic failure, her words came to me like they were divinely decreed: Love is a battlefield.

A Pat Benatar single from 1983 doesn’t seem like a likely parenthood mantra, I know.

My father, shaped by raising two daughters, told me, “Once you have a child, you’ll wear your heart on the outside for the rest of your life.”

Pat said it in a catchier way, “I’m trapped by your love/And I’m chained to your side.”

If my unarmored heart resided on my exterior, then I was bashing it into everything in hopes that eventually it would hit something soft. I loved that hungry, angry baby. I loved her so much that I felt smothered and trapped, trying to come to the correct decision about how to feed her through the pain and frustration. Giving up on breastfeeding wouldn’t be loving her less, I knew, but I felt chained to her in our battle and I did not want to be the one to lay down arms.

Things started well. She swiftly latched on in the operating room after being pulled from my body and handed over the blue surgical drape. I will always remember the anesthesiologist, posted dutifully at my head, delighting in seeing a baby breastfeeding in the OR for the first time.

Within weeks it had turned into a cascade of problems – her weight chart was a rocky drop-off instead of a climbing mountain, and our medicine cabinet held a veritable apothecary of lotions, salves, and prescriptions aimed at soothing my pain. I missed being able to comfort her. I missed her happiness, snuggled next to me, safe and warm and nourished. I hated that I felt dread when she woke up, bleating her hungry cry. It seemed ever-present.

It often took so long to try to feed her, between nipple shields and latching and re-latching and positioning, that by the time I thought we were done she was hungry again. I’d fumble with plastic and pillows while she cried, pulling her on and off, on and off, seeking a good fit that never seemed to come.The two of us were covered in tears and sweat and ointments and milk. At what point do you break? When does it become too much?

The diagnoses varied: high palate, disorganized suck, shallow latch. Then, finally, on the mandate of my own desperate research and dogged insistence: tongue tie. Not the obvious kind, but tongue tie nonetheless.

I pinned down her arms while the doctor wielded his scissors. Later I hid in the bathroom, hands over my ears like a petulant child, while my husband forced his fingers under her tongue and stretched it three times a day, intentionally interfering with the wound so it would not heal too quickly to make a difference, on doctor’s orders. Marigold is almost four, and Matt is still convinced she’s holding a grudge against him because of it.

Is that love? When I imagined her, as she kicked and rolled in my belly, I never pictured that love would entail holding her body immobile so we could help her by hurting her. It was an act of faith and determination to endure. Love is a battlefield.

Now she eats crackers of undetermined age that she finds in my bag. She loves ham, fruit snacks, string cheese, and popcorn. Our second child combats sleep, not the breast, and so I laid down that particular sword when Marigold finally picked up a good latch, and I’ve never lifted it again.

Still, the words of Pat, Patron Saint of Exhausted Mothers, come to me when I am struggling with motherhood and its pains. Love is a battlefield and that means I will put my heart on the line. I will armor myself with purpose and courage, every day.

How Parenthood Changed My View of Scary Movies

When people say that “everything in your life will change” once you have a child, I thought I knew what that meant. I wasn’t expecting this.

When my two best friends wanted to put together a movie date to see IT, I jumped at the chance to have a girl’s day without my eight-month-old son in tow. Brunch and besties? Yes, please! Plus, it’s almost Halloween, so I figured a scary movie – albeit one based on a book I’ve never read, but by an author I enjoy – was seasonally appropriate.

I wasn’t expecting to walk out of the theater unable to stop crying, but that’s what happened.

I’ve been sensitive to creepy movies and books since I was a kid, but over the past decade or so, I’ve grown to enjoy certain “scary” movies. The Cabin in the Woods pleasantly surprised me in a way I didn’t think was possible anymore in that genre. El Orfanato is deliciously creepy from start to finish. And as far as Stephen King goes, Carrie nails it.

But it’s been a while since things that go bump in the night had the capacity to reduce me into a whimpering mess. What’s different?

I have my own kid now, that’s what’s different. When people say that “everything in your life will change” once you have a child, I thought I knew what that meant. I wasn’t expecting this.

Obviously I’m not afraid of a homicidal clown like the one in the movie, but the biological instinct to protect my kid at all costs flooded my body in a way I’ve never experienced before. When I made it home after IT, I put the question to Facebook. Who else felt like this switch had flipped once they became a parent?

I was floored to discover how many parents, mostly women, have experienced this same shift. It’s as though we’re completely incapable of separating ourselves from the fictional narratives. I was flooded with responses like these from other parents:

  • “For several years after my child was born, any movie/show where the kid was the target of violence or terror just made me ill.”
  • “I can’t deal with anything involving children being harmed in any fashion.”
  • “I couldn’t wait to get home and hug my kid after [seeing IT].”
  • “When Georgie goes out to play in the rain alone, it gave me so much anxiety.”

And so on.

Even my aunt, a nurse of many years, admitted that she had to leave bedside nursing in the oncology ward after she had her three sons. She explained that “the death and difficult disease process were too much to bear after having my own children.”

If somone who faces death and decay on a daily basis felt the same trauma I felt when caught unaware, I knew this guttural reaction went deeper. Dr. Keith Humphreys, psychiatrist at Stanford Health Care, confirmed my suspicions.

“We’re pretty deeply programmed as humans to love and protect our children,” says Dr. Humphreys. “If we didn’t have that, we wouldn’t have survived as a species for so long.”

He goes on to explain that fathers, as well as mothers, are susceptible to this same reaction after becoming parents. Part of this is due to basic biological survival mechanisms, but he suspects it’s also due in part to our overexposure to violence in the media.

“It’s still tough for people because the media knows that stories about children being harmed are eye-catching,” confirms Dr. Humphreys. “It’s common to open a newspaper and see that every day they have another ‘horrible thing that happened to a kid’ story. It’s a way to manipulate you. That’s very upsetting, but it’s hard not to click on it. And that’s what causes anxiety. A lot of parents find it really challenging because you can’t avoid that. You can avoid horror movies – just don’t go to see them.”

This protective reaction isn’t universal. Dr. Humphreys says that even non-parents can be affected in the same way when faced with children in vulnerable situations, and some parents are better equipped to separate themselves from the fantasy.

I don’t think it’s masochistic [to still enjoy scary movies as a parent],” says Dr. Humphreys. “Some people are able to.”

After IT, I decided to test this theory by watching movies I’d seen before that I knew included violence (or implied/attempted violence) towards children in various situations. The Shining. Room. The VVITCH.

What I found was that I was better able to stomach violent images that I’d seen before. My mind had already witnessed these atrocities; I was prepared, albeit still disgusted. I didn’t “enjoy” them, but I avoided the involuntary reflex to protect.

That’s why I think IT affected me so badly. Watching a child succumb to Pennywise’s manipulations made me nauseous. It’s a worst nightmare come to life, it’s reality cloaked in fantasy. It’s masterful. It’s merciless.

This instinct isn’t rooted in weakness, it’s a testament to the power of parental love. If the price I have to pay for being a parent is an inability to digest horrifying imagery like this, I’ll happily skip seeing mother! and keep Hocus Pocus on repeat for every Halloween season to come.

(P.S. My friends, who are non-parents, felt really bad. I still love you guys!)

Ten Proverbs That Unintentionally Taught Me to Be a Better Parent

I doubt some of the parenting advice I gleaned from these proverbs was exactly what the original authors intended, but it was helpful nonetheless.

I’m not really one for trite sayings in general, but especially trite sayings about parenting, like “the days are long but the years are short.” Then one day, I realized how much parenting wisdom is tucked away in our most common proverbs. Though I doubt some of the advice I gleaned was exactly what the original authors intended.
Here are 10 proverbs, modified to suit the parenting life:

1 | If you want something done right, you have to do it yourself.

True. Except here’s the thing. If a kid or spouse is doing it and you think you can do it better, ask yourself a simple question: “Do you actually want to do it yourself?”
If no, shut your mouth, carry on and, if necessary, take notes for constructive feedback later.

2 | A watched pot never boils.

Similarly, children can never put on their shoes and socks while you’re watching them. Watching kids struggle to get dressed is like trying to get through a “Lord of the Rings” marathon to impress a first date.
Seriously, walk away. Have a second cup of coffee.

3 | If you can’t beat them, join them.

Every now and then, when your kids are off-the-wall bonkers and you can’t calm them down, just join in. Nobody really wants to be the one sober person at the party.
I can tell you from experience that watching your kids toilet-papering your living room can send you into a tailspin. But doing it with them is oddly satisfying.

4 | No use crying over spilled milk.

My kids spill their milk and other things a lot. It used to upset me a lot. But there are only so many yells in one day, and I decided to save them for more important things.
Our current mantra is, “Well, at least it’s not blood. Now go clean it up.”

5 | Familiarity breeds contempt / Absence makes the heart grow fonder.

I’ve lumped these together because they’re opposite sides of the same coin. Any parent who has ever spent several days (okay, hours) trapped in a house with their kids will understand. You start off at 6 a.m. with nothing but love, but by bedtime…pure contempt.
On the flip side, nothing makes me love my kids more than a little break. So when you find yourself climbing up Contempt Hill, work to arrange a get-away fast, even if it’s just a quick run to the drugstore to buy things you don’t need.

6 | Good things come to those who wait.

This can be applied to a million things, but comes in particularly handy for dinner and tantrums. When trying to get my kids to eat something not high on their list of top foods (i.e. anything that’s not pizza), I’ve learned to plop it down and walk away.
Don’t make eye contact, don’t cajole or discuss, just leave it and wait. At some point, they’ll eat it, if the dog doesn’t get to it first.

7 | You can’t make an omelet without breaking a few eggs.

I love cooking and I love my kids, but initially, I didn’t love the two together. Eggshells got in the batter, flour got on every surface in the kitchen, butter got places butter should never be, and it took roughly two hours to complete a 15-minute recipe.
But, oh how they loved it. Once I embraced the disaster (and learned to have them crack eggs, one at a time, in a separate bowl), I loved it, too.

8 | No man is an island.

I really, really struggle with asking for help. I once cut my fingertip off with a mandolin and then pushed my two-year-old two miles in a stroller, while pregnant, looking for an urgent care that took my insurance.
Once I had two kids, I realized this wasn’t sustainable. Learn to ask for help, because most people don’t mind and you can’t get it done yourself.

9 | Better late than never.

This obviously applies to day-to-day lateness, but it hit home for me in terms of child development. My daughter didn’t walk until 18 months, and my six-year-old son, while showing early promise in engineering, still can’t tell me the difference between the sounds ch and th.
It’s easy to get caught up in intense worry over these things, but the truth is, kids really do develop at different rates. Comparing will make you crazy.

10 | When the going gets tough, the tough get going.

Sure, we want to model how to stick it out for our kids, but we also want everyone to survive until they reach adulthood. No one benefits from a crazed parent. Sometimes, it’s best to just walk away.
Give yourself a timeout in your closet, preferably with a drink or snack of your choice.
 

What Story Does Your Closet Tell?

MoMA’s new exhibit, “Items: Is Fashion Modern?” got me thinking. What story does the contents of my thirty year old closet tell?

The Museum of Modern Art has a new exhibit. “Items: Is Fashion Modern?” pieces together 111 articles of clothing from low end to high, from basic to extravagant, from eastern to western culture. Each garment must have had “a strong impact on the world in the 20th and 21st centuries – and continue to hold currency today.” 111 items to tell the story of the world.

You can walk past a plain white t-shirt and study a row of little black dresses. A pair of flip-flops earns a spot, as does the iconic pearl necklace, a pair of Levis, and a sari. A 1980s red Champion hoodie and the very first teeny tiny string bikini redefine function and style.

This, of course, got me thinking about my own clothes and the story they tell. So I stepped into my closet, a time capsule in itself, and took a look.

All heels higher than two inches sit on a shelf so high I cannot reach them without a step stool. They are covered in a fine layer of dust. These are what I call my “wedding” shoes. They only come down for events requiring RSVPs where three courses of food will be served.

Below the heels are the shirts, arranged by color, because I treat clothes like mood rings. Greens and yellows are good luck charms and charcoals are for dark days. Even as I run my hands over them, under the fluorescent light that is supremely energy efficient but also gives everything an antiseptic look, I see that two-thirds of my wardrobe is moot.

Silks and beaded things and sheer blouses from Anthropologie hang lonely on their padded hangers. Anything that requires a camisole has been abandoned. I spy the pants from before pregnancy, two sizes ago, still hanging in there underneath it all. Their presence is not a goal, but a respectful memorial, perhaps something to pass down to my daughter when fashion circles around again. Will people ever fall back in love with boot-cut? Acid wash came back, so maybe.

None of these speak to my current life as a mom of a five-year-old with special needs and three-year-old twins. Dry-clean only doesn’t hold up well when you’re refereeing Spaghetti-O food fights. And who has time for a camisole? I know other women can do it – the glam mom thing – but I’m lucky if I remember to put on a bra.

If I’m honest, the most highly trafficked area isn’t the hanging items at all, but the two narrow shelves of t-shirts, stretching all the way back to an 80s relic from a trip to Lake Tahoe and all the way forward to last Saturday’s impulse buy at Target that reads: “Sunday is my Funday.” These are my go-tos for the life I lead now as a work-from-home mom. However, the fact that I’m still holding on to all my old work clothes that used to carry me out of the house smelling like rose lotion instead of bacon and sweat says something. The old life is still there, staring at me in that six-by-four-foot space that I also share with my husband and his decades of apparel.

I suppose it means I’m not ready to give up on the pin-tucks and off-the-shoulder numbers that require a strapless bra. I think they’ll come around again when the kids are older and, fingers crossed, more self-sufficient. The heels won’t have to wait for a printed invitation.

Even in this future picture, I’ll still hold on to the 80s tee and the yoga pants and the Chacos and my favorite cowboy boots that are currently competing for space with eight pairs of toddler shoes because nothing is sacred in this house. My closet tells the story of all the living I’ve done. The dry-cleaned things might be shoved into corners, but it’s for a good cause – to make way for all the people tramping in with their own messy lives.

What I can’t makes sense of, though, is how MoMa managed to cover two centuries in 111 pieces when I’ve got that much on my floor just from yesterday.

ICU I See Me

I gestured that I wanted a pen and paper. “What happened?” was the first question I asked as I did my best not to bite through the tube.

I woke up with a tube down my throat. Someone – my husband? – told me to stay calm, and to bite down on the tube if I needed to. I gritted my teeth and tried not to panic. The last thing I remembered was having my baby girl placed on my stomach, and then the next moment blood was gushing out of me and my vision was growing dim at the edges. I told my husband to tell our boys that I loved them and then…now.

Since I couldn’t talk, I gestured that I wanted a pen and paper. What happened? was the first question I asked as I did my best not to bite through the tube. A nurse came in, promising me that they’d get that tube out of my throat in a matter of minutes.

Gritting my teeth, I tried to focus. My husband and the nurse were talking in turns, trying to give me a narrative of what had happened to me, but all I could focus on was the memory of my daughter. I scrawled another note. Where is Adelaide?

The nurse glanced at my note, patted my arm, and said, “In the nursery, hon. I’ll see what I can do to bring her in just as soon as we get the tube out.”

Carefully I nodded, every movement jarring the tube. I forced my lips into an approximation of a smile, trying to convey to the nurse that I was on board with her plan. When she left the room again, my husband tried to tell me yet again what had happened.

After I gave birth I started to bleed out, and I’d been rushed into surgery where I had been for four hours before I was moved to the ICU. I nodded along, but I didn’t comprehend any of what he said. My husband turned on the television so that I would have something to distract me while we waited for them to un-intubate me.

When the nurse came back in with a second nurse, I was both excited and terrified. “You’ll need to cough as we pull the tube out,” nurse two said.

I did as I was told, and even though I complied exactly, it still felt like someone was using sand paper to rip my esophagus out. “You won’t be able to talk normally for a while,” nurse one told me.

“Okay,” I whispered, so relieved that I was able to speak again that tears welled up in my eyes.

“Your daughter will be in shortly,” nurse one said, patting me on the arm again.

All the questions that I hadn’t known that I wanted to ask started to pour out of me in whispered bursts, and my husband did his best to answer them for me. I tried not to stare at the door, but I couldn’t help it.

I was still whispering when the door cracked open, and the nurse came in wheeling a bassinet. My heart leapt in my chest as I caught sight of my little girl. She was just as beautiful as I had remembered, and now that she was here again I realized that everything I had gone through was worth it just to have this moment.

I Thought I Hated Halloween, Turns out I Just Hate Adult Halloween

I have no patience for the over-the-top spookiness that grown-ups sometimes get into, but when it comes to trick-or-treating? I’m there.

Some years, the Halloween memes start in September. Other years, my social media feed is filled with “I can’t wait for Halloween season” stuff as early as mid-July.

I am, undeniably, a weirdo. That has always been true. I’m queer, I haven’t had a “normal” haircut in over a decade, and I just generally don’t fit in most places. The thing about weirdos is that they seem to really love Halloween. If you’re sort of nerdy, kind of crafty, and a bit of a social outcast, it seems like Halloween is the holiday for you. No less than three of my close friends throw a yearly “epic Halloween party” that they refer to as “an important tradition.” I’ve heard the phrase “Halloween is my Christmas” more times than I can count.

I mean no disrespect to the many grown-up people who love Halloween, I love people who love Halloween and want them to be happy! It’s just that, all of this excitement over the last day of October never made much sense to me. For the rest of the year, I felt like I had a special bond with my fellow weirdos. But year after year, when October rolled around, I suddenly felt like an outcast amongst outcasts.

I just didn’t like Halloween (or so I thought).

I hated the competitiveness of searching for the perfect cool hipster costume. There were amazingly intricate (and incredibly expensive) perfect fantasy costumes from Game of Thrones. There were obscure comic book costumes that only the most seasoned geeks would get. There were hilarious joke costumes, like the “sexy nurse” who was just wearing regular nurses’ scrubs. One friend told me that she spends at least 300 dollars on her Halloween costume, every single year. I couldn’t keep up.

Then there were the parties, which were always too much for my social anxiety to handle.

Don’t even talk to me about the horror movies and related horror content. I do not do well with blood and gore. I am un-ironically terrified of zombies, so no, I don’t want to come to your zombie walk or whatever. Attempting to participate in Halloween left me exhausted, feeling like a failure, and having weird zombie nightmares for weeks. I wondered vaguely what was wrong with me. Halloween is fun! I loved Halloween as a kid, so why couldn’t I get into it as an adult?

Well, it turns out I actually love Halloween, I just love little-kid Halloween. I have no patience whatsoever for the parties and the drinking and the over-the-top spookiness that grown-ups sometimes get into, but when it comes to trick-or-treating? I’m there. I mean, what’s not to love about candy, silly costumes, and hilarious little kids who get amazingly excited about this weird special day?

I first realized that I was into Halloween last year, when my kid was a little over a year old. We decided to go in a family costume, which is so delightfully cheesy I can’t even stand it, and so the wife, myself, and the toddler dressed up as Peter Pan, Wendy, and Tinkerbell. I had fun finding the perfect blue nightgown at the thrift store.

Then, much to my surprise, I started doing something else. Slowly, over the month of October, I started amassing Halloween decorations. One day my wife came home from work to find me cutting out dozens of felt leaves to hang in our living room window. It was like the lurking crafty mom in me was suddenly awakened.

On Halloween night itself, we took our cheerful child out to collect candy with his neighborhood buddies. Walking around with a gaggle of kids, listening to them chatter about all the chocolate they were going to eat later (if only they could get their moms to let them!) was an absolute blast. In one memorable moment, a three-year-old tripped over the tail of his costume and, when I asked if he was okay, brushed himself off and said “Don’t worry, me didn’t drop any candy.”

I mean, kids are the best.

This year is shaping up to be even more exciting. My kiddo is now two, and we were actually able to explain the holiday to him a bit and even talk to him about costume ideas. As a mother, there are few things as thrilling for me as watching my child decide what he wants, and go for it. He shot down all of my costume ideas, from dinosaur to lion (actually, he laughed at me for even suggesting such things), and then confidently announced that he will be a bunny.

Not just any bunny, the bunny in one of his favorite books, “Small Bunny’s Blue Blanket.”

As I plan out the specifics of how I’ll make such a costume, I find that I’m not annoyed in the slightest. The irony isn’t lost on me that the very thing that bugged me about adult costumes, the hyper-specific attention to detail, is totally thrilling when it comes to making a great costume for my kid. But I am who I am – a woman who’s way more motivated to make a cute and fun costume for her child than she ever was for herself.

As for me? I’ll be dressing up as a witch. Finally freed from the pressure to do something unique and clever year after year, I’m able to admit what I’ve always wanted out of Halloween. That, as it turns out, is to wear the same classic (and boring) costume year after year. My mom always wore the same costume and put up the same decorations, and the tradition was definitely a comfort to my childhood self. Now I’m forming my own Halloween traditions.

I guess I just needed a kid to inspire me.

Determination

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!
What a mundane word: determination. Used so casually to describe the driving force behind menial tasks. “Sure took a lot of determination to carry all those groceries in by yourself.” To me, determination means so much more. Sometimes determination is all you have.
Daylight breaks, warm rays of sun fall on your bed and face. Your eyes open and, for a moment, just a moment, you feel at peace.
Pain. Pain hits you like a truck. It doesn’t trickle in from a tap, it pours in from a waterfall. You can feel it everywhere. As it sinks in, saturating your hopes for the day, your ambitions, your solitude, it meets a wall. This wall is my determination not to let chronic pain steal my day.
Lists and lists of things that must be done…. Doctor appointments to book, parent and teacher interviews to arrange, bills to pay, a house to clean, dogs to walk, cats to feed, an Individual Program Plan to review, exams to study for, Low Vision and Autism information sites to read, and I will probably have to pee a few times.
Did I take my meds? Give my son his meds? I must have. I do it twice a day, every day.
There is the pain, still there, eating at me.
Eight things off the list. Have I sat down yet?
What can I postpone? I will get through this day. My pain won’t destroy me. I have unending determination.
Made it. Sort of. I am behind on my chores, phone calls, studies, writing, marketing, health, and organization of a future for my little family. Me and my boys. We have a happy place in this world. We are finding our way.
There are extracurricular and volunteering activities to attend to. That’s fun. Busy, but fun. We have colleges to look at, plans to make, and upcoming holidays. Terrifying, but fun. I can fit in my medical appointments, surgeries, and exams. Somewhere. As long as my son’s shunt doesn’t malfunction, as long as he doesn’t have a seizure, or my truck doesn’t break down, or….
I am determined to not let those things happen and have even more determination to handle them when they do.
The day is moving quickly. A few new symptoms. What’s that about? My son had a headache at school and his aide was being “mean.” But hey, we are down to four headaches a week. That’s great news. No homework? Even better. Let’s cook together. Life skills for the future, boys! Plus, it’s fun.
A bit hard to peel sweet potato when your back feels burned by stabbing hot pokers and your foot is half dead. Even more difficult to cook, make lunches, feed and walk dogs, deal with paperwork, and organize showers when you have more knots in your muscles than a lobster trap and the pain-induced nausea drowns your thoughts.
Let’s do this. My determination will see me through.
Finally, time to sleep. I hope I can sleep. The hours before I drift off are for reflecting, clenching the pain aside, taking mental inventory of coping resources: I kept my temper, didn’t lose my patience, listened to stories of grand dreams, computer games, Sci-fy books, girls, and heard a bit of bickering, of course.
Smiles, laughter, stories, that’s what its all about. Goals, dreams, ambitions, that’s what it’s all for. Maybe I will get my degree, go back to work full time, become an accomplished author. Maybe my son will become the biologist and fabulous family man that he hopes to be, and possibly my other son will receive all the external supports he will require to be an independent adult and marry a movie star….
We will have bumps along the way. Chronic illness does that to you. But we have made it this far. We know a little determination goes a long way.
And it carries all the groceries in, too.