How I Missed My Kindergartner's Color Deficiency

Roman’s perspective of the world was colored, literally, different, yet his outlook was unfazed.

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!
It was only two weeks into kindergarten when my son, Roman, brought home a coloring assignment, a cut-out owl, with a big letter F marked in red on the top of it. The owl was colored not brown, but green, adorned smartly in a graduation cap and gown, holding a diploma and donning wiry spectacles. Under the bitter mark was a lengthy and unsympathetic explanation of the grade: Owls are NOT green! With respect for the rules of writing, I use one exclamation point here, but Roman’s owl had not, one, but three of these dramatic punctuation marks, marks that typically need to be well earned when chosen over a simple period for ending a sentence.
I’m not undermining the importance of following directions and learning the motor skills and conventions of coloring in a kindergarten classroom, and if this had been a high school final exam, perhaps a math or a science or an English language test, my own instinct would have been to ask Roman why he didn’t try harder, why he didn’t get a better grade, explain that an F is not acceptable, as my overachieving parents would have done. However, my son seemed to be faced with a burned out teacher radiating indomitable meanness at this early stage in his education, a time when fostering success and enthusiasm about school is paramount. Even worse, I suspected something more significant.
I suspected that something was medically wrong with Roman.
As I held the crumpled owl in my palm that I had balled up in anger, a wooden knot rose up in my throat. I swallowed, slowly spread the owl out on my desk, and examined Roman’s beautiful work, that I had initially been critical of myself, his best effort. I put Roman’s folders back into his book bag, recalling the many times we’d played toddler games. I’d quizzed him like the proud mama I was. I’d held up flash cards and pictures for him to name. Animals. Shapes. Even letters.
And colors.
In toddlerease, he proudly named chinchillas, ostriches, and bearded dragons, from his book entitled, “My First Animal Book.” He could tell the difference between a puffin and a penguin which, at his age, I’m sure I could not – all the more reason he seemed too smart not to know his colors correctly.
But I figured he’d catch on eventually, didn’t sweat it.
Then I thought even further back, to images from my own childhood.
I recalled my own mother throwing up her arms at my father’s mismatched outfits. My grandmother noting how he had to read the position of the traffic lights, instead of the colors, green, yellow, red. My dad was colorblind, and I was certain, now, that Roman was, too.
Then I thought of how I’d failed as a mother the time I’d yelled at Roman for not picking up his toys from the lawn, remembered the time clearly. There was a brown baseball in plain sight and I was pointing right at it where he left it, along with numerous other whiffle bats and balls, lying on the grass.
“I don’t see it.” He shrugged.
“It’s right there in front of you,” I yelled in frustration.
And then I thought of how my own frustration might hinder Roman’s determination to succeed in school, throughout the year, if I didn’t hold back my urge now, to march into the principal’s office and have the teacher reprimanded for her intolerance to his unconventional coloring that was, to me, at least, so obviously indicative of a visual disability.
Instead of reacting, I poured myself a glass of wine. I gave Roman a hug and told him I liked his green owl, flattened out the paper and blacked out the F, the unkind words, too, with black sharpie marker. I put a sticker on it and pinned it on my office corkboard next to his baby pictures and snapshots of our family vacations.
How could I have missed this?
What kind of mother was I?
What kind of doctor?
I gave myself a little slack on my professional vocation, since I’m an anesthesiologist by training, not a pediatrician, not an ophthalmologist. But as a mother, I truly felt I’d failed.
I was determined not to create a bigger problem for my son, yet I wanted to help him. I’m aware that there is no cure for color deficiency, so my determination focused on ways to help him succeed, despite a possible disability.
I held back, instead of reacting negatively like Roman’s teacher had done, undulating waves of her criticism in our direction that crashed on the deaf ears of a developing child who still, after receiving the grade, could not understand what he had done wrong. There was no way he could visualize the clear distinction between the green and brown. I held back and I learned everything I could about the condition of color deficiency, which I had been calling colorblindness, incorrectly. I learned that up to eight percent of boys are color deficient, not possessing the correct number of cones in the inner eye needed to see shades of red and green colors as well as the rest of us can. I quickly researched the diagnosis, reading up on possible treatments which sadly, are lacking. In Roman’s case, color chart testing performed by his pediatrician confirmed that he was a deuteranope, or red green color deficient.
When I left the office I wrapped my arms around my little boy, handled my glassed eyes with tissues, trying to wipe away the uncertainty. He seemed more vulnerable, imperfect, yet I loved him more for his flaw, and I felt the intensifying urge to nurture and protect him. I realized that he’d face certain tasks that made his life much more challenging. I still felt guilty for my flood of emotions when I thought of how much worse it could be, how it wasn’t the most physically limiting disability he could face, and yet I smiled.
I smiled because mostly, it didn’t seem to bother him at all.
Roman’s perspective of the world was colored, literally, different, yet his outlook was unfazed. And as I took a moment to process the implications of his disability, I was determined to affect change in a positive way, a kinder and gentler way, when I explained his condition to his teacher. I thought of the thirsty bird in the famous Aesop’s Fable, who slowly raised the water level in the vase with each tiny stone it dropped into the vase with its beak. By solving the problem effectively and not knocking over the whole vase in the process, the bird quenched its thirst. Explaining Roman’s condition calmly to his teacher seemed to be a better way to try to prevent this from happening again in the future, than ratting her out to the principal would. And I knew that Roman would need to solve problems on his own one day, by labeling colors or asking for help.
She didn’t apologize.
This was disappointing, to say the least, yet I hadn’t created any additional tension that could affect Roman’s grades for the remainder of the school year. What was more important was the way I wanted my son to see me, not in tan or pale hues, not in shades of blonde or brunette or redhead hair, and not for the point of noticing the colors of my clothes, but to see the person I am. I wanted him to know that I would do everything in my power as a mother and as a doctor to help him. Even before doing so, I wanted him to see me as someone who would fulfill the Hippocratic Oath I took in medical school, one that applies as much to mothering as it does to medicine. I remained determined for him to see that my promise to him above all, is to do no harm.

How to Test Your Kids’ Vision Before They Can Read

You might be wondering how your three-year-old could possibly sit still for an eye exam, let alone read one. Here’s how.

The US Preventive Services Task Force recently recommended vision screening for all children between the ages of three and five.
If you’ve logged a good amount of time trying to distinguish “C” from “O,” you might be wondering how your three-year-old could possibly sit still for an eye exam, let alone read one.
Childhood vision screening generally takes place in a pediatrician’s office. Here’s what your child’s pediatrician is looking for and what you can expect during the visit.

What your child’s pediatrician is looking for

Unlike your eye exams, which may include testing for glasses, your child’s vision screenings are generally looking for warning signs of future vision problems.
Your child’s pediatrician is specifically screening for evidence of amblyopia, which occurs when one eye is unable to communicate properly with the brain. The risk of amblyopia is low: according to the USPSTF, between one and six percent of kids under age six will have either amblyopia of a risk factor for amblyopia.
In its review, the USPSTF found there to be small but permanent improvements to vision in three- to five-year-olds when amblyopia is identified and treated. Because the tests for amblyopia and its risk factors are non-invasive, the USPSTF has determined that the benefits of vision screening outweigh any harms.

What to expect during the visit

A pediatrician may use many different tools to examine your child’s eye structure, coordination, and acuity. The following three tests are among the most common.

Tool 1: Red Reflex

What it measures: Your child has likely had a red reflex test before, as many kids have them before two months of age. The test helps identify any physical abnormalities in the back of the eye, ranging from cataracts to retinoblastoma.
The red reflex test is named after the color healthy eyes give off when viewed through an ophthalmoscope from about one foot away. That red color is easier to see in the dark, which is why your pediatrician may turn the lights off for this test.
The phenomenon is the same as the “red eye” you try to edit out of photographs. In fact, photographs featuring a single red eye have been used to identify serious eye conditions.

Tool 2: Cover/Uncover Test

What it measures: You’ve probably seen your child’s pediatrician do a fix and follow test, in which your child is instructed to look at the pediatrician’s finger and follow it around the room. That test examined how well your child’s eyes function together.
The cover/uncover test works a similar way. Your child will be asked to focus on an object in the distance, then the pediatrician will cover one of your child’s eyes. While your child is still looking at the object, the tester will uncover the eye and watch for movement.
The test is observing for strabismus (incorrectly aligned eyes), which is one risk factor for amblyopia.

Tool 3: Lea Symbols Chart

What it measures: You may have not spent a lot of time thinking about how the letters at your optometrist office get made. They are optotypes, specially designed tools for testing vision. The letters in an optotype are designed to all blur equally under the same conditions, which give examiners a better understanding of a patient’s visual acuity.
Pre-readers get their own special optotypes. Instead of letters, they’ll likely have four symbols: a square, a circle, a house, and an apple. Those symbols, called the Lea Symbols, have been shown to get more cooperation from kids than other eye tests.
The Lea Symbols test works much like the eye charts you see (or don’t see!) at your optometrist. The test measures kids’ visual acuity, and can determine whether or not your child may need glasses.

If Determination Could Grow Gills

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!
For the fourth time my five-year-old came up sputtering and coughing. The other people in our community pool were starting to look at me with what I can only call “judgy” eyes.
“Sweetie,” I admonished her in a whispered hiss, “ don’t breathe when you go under okay? Just hold your breath like we talked about.”
Her big blue eyes looked up at me and she smiled. A drop of water rolled off her nose an instant before she pinched it shut, puffed out her cheeks and stuck her face back under the water. Sure enough, not two seconds later, she surfaced, sounding like she was coughing up both lungs.
The lady in the lawn chair nearest us lowered her shades to give me a “why are you drowning your child?” glare. But it wasn’t my doing. My child was determined. She has a kind of steely resolve built in her soul. And it serves her well.
She was born with a birth defect called spina bifida. She has had seven surgeries and she has worked in physical and occupational therapy since she was a few months old. Along the way she picked up the message that if she wants something, she just needs to do her best, work hard, and eventually she will get there, even if she needs a little accommodation to do it. She will be able to do what she works hard for.
And my girl is one hard worker.
Her first physical therapist said she would never sit up unassisted, never crawl. She disagreed with his assessments on pretty much everything. She worked for what she wanted. We got her a new PT who helped her reach the goals she wanted. She not only sat unassisted as a baby. But she four-point crawled as a tot. She walked now with braces and a walker. She plays T-ball. She makes honor roll in her kindergarten class.
She is unafraid of anything. When they brought the giant snake to class on critter day, she was the first one to raise her hand to hold it. She always has a smile and loves greeting her many friends with a hug. She knows that when you fall down or make a mistake you try again and do your best.
Though generally, determination is a commendable trait … Unfortunately, at this point in her life my darling daughter’s determination makes her think that if she just keeps practicing, like at PT or reading, she can do anything. Including breathing underwater.
And she doesn’t believe me when I tell her “no.” The biological differences between humans and fish seem to escape her, though I’ve tried explaining. Her solution was that I should buy her a mermaid tail. She’s seen them for sale on TV and she’s seen mermaids also. I tried explaining that mermaids were not real and that the ones she had seen were playing dress up.
She thinks I’m trying to scam her. She has even tried to convince ME to try and breathe underwater.
“Mommy YOU do it!”
“Mommies can’t breathe under water either. No adults can.”
“You should practice with me.”
And all I can do is facepalm. Because on one had I have to admire her spirit. She never lets it be said that she can’t. On the other hand, the sooner they cover biology in school, the safer she will be.  Her father is certain she will win in the end. As soon as she gets old enough, she will take a SCUBA course and breathe underwater just like she wants to. Where there is a will, there is a way!

Life’s Curveballs

When people ask me what motivates me in life, the answer is always him. He’s my driving force, the reason I forge on.

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!
35 years ago, my older brother Kip was born with a very rare genetic disorder called Cornelia de Lange Syndrome. Along with his diagnosis came a plethora of complications. In short, his body will not allow him to do what he wants it to do. He is completely aware of his condition, and could likely tell you (in great detail) all of the challenges that he has experienced as a result of an unfortunate chromosomal mishap during conception.
Kip survives in a world of print he cannot and will never understand. He faces discrimination and judgments daily. People stare, they whisper. His daily tasks of living take more effort and courage than most of us can even imagine. Ultimately, he lives captive in a body that doesn’t work like it should.
Most would agree that Kip has been dealt some very difficult cards. Most of us would also look at the many obstacles and hurdles that he faces, and give up. But not Kip. He’s an example. A daily illustration of perseverance. Of strength. Of pure grit and determination. He wakes up each day with hope in his heart, willing to face whatever obstacles life happens to throw his way.
Despite the many difficulties he encounters, he never backs down. He doesn’t succumb to bitterness, nor does he feel sorry for himself. As a matter of fact, in 35 years I’ve never once heard him complain about the challenges he faces or the hand he’s been dealt. Not once.
Kip is the kind of person who takes money out of his savings account and buys a ticket to ac-company you on a flight with your three children so you don’t have to fly alone. He’s the type of person who responds with “it’s okay, we all have bad days,” when he sees me lose my patience and yell at my kids. When my husband left for a week on a work trip, Kip came and stayed with us, so he could walk my (very nervous) oldest son to and from kindergarten on his first week of school. He’s the kind of person who would do anything for you, if he thought he might be able to lessen your load. He’s kind, calm, and genuinely helpful. It’s so humbling to see someone who has everything in the world to be upset about, choose love and kindness above all else.
Now I don’t know about you … but I wouldn’t be able to have this much courage. I would be bitter, angry, and sad. All emotions that I’m sure that kip has experienced plenty of … but when push comes to shove, instead of resentment, he chooses strength and compassion. Every. Single. Day.
Talking about my brother and his challenges has not always come easy to me. I am ashamed to admit that when I was a young girl, I used to be embarrassed that Kip was different. I didn’t understand why I couldn’t have a “normal” brother like my friends. I would get frustrated and angry. I was young, self-centered, and could only see how his syndrome impacted me. As I write, these words are still as venomous and hurtful today, as they were 20 years ago. It breaks my heart and shames me, but I also know that these emotions were all part of the experience. The process. The teaching.
The thing is, Kip has been teaching me from the very beginning. When I waited for hours every morning while he finished his “routine,” he was teaching me patience; When I yelled at him for not being able to remember the phone message, and he told me “I’m sorry, my brain doesn’t work right,” he was teaching me humility; When I watched him approach my cheating high school boyfriend in the middle of the senior hallway and tell him he was a jerk “for making my sister cry,” he was teaching me unconditional love. Most importantly, his unwillingness to give up, despite assholes like myself, was teaching me about the true meaning of bravery.
Somehow I was lucky enough to be given the opportunity to learn from Kip. Of all the families in this great big world, somehow our family was chosen. And the lessons are humbling. Lessons of strength, and tenacity, and persistence. He’s taught me perspective and to appreciate my abilities and the many things that I have been blessed with. He’s taught me empathy and the importance of valuing every single person’s worth. Above all else, he’s shown me that even in your darkest hour, when you think you can’t take another step forward, you can. I know it’s possible because he does it every single day.
My mom once told me that “it’s easy to be on top and keep your cool, but the true test of character doesn’t happen there. It’s when things don’t go your way, when life throws you a curve ball, that you are given the fleeting opportunity to show this world what you are really made of. Strength and tenacity only increase when tested.”
And she’s right. As for Kip, his daily life is a constant curve ball; and if you ask me, I’d say he’s batting 1000.
When people ask me what motivates me in life, the answer is always him. He’s my driving force, the reason I forge on. Because if he can do it every single day, I have no excuse not to. I’m so damn proud to call him my brother. I’m in awe of his strength and humbled by the way he handles his struggles with such courage and grace. It’s amazing. Inspiring really. To watch someone thrive, despite the daunting challenges he faces, and not ever give up. He’s making this world a better place, by serving as a constant reminder of what true determination really looks like.

What It's Like Parenting With Hearing Aids

The worry didn’t stem from passing my hearing loss along, it stemmed from the idea that I wouldn’t hear my kid.

“Mommy!” called my son from his car seat as we drove. He wanted something, but I couldn’t hear him.

I turned the music off, rolled up the windows, and repeated “What’s that?” for the third time.

“Unintelligible something or another,” he called again out to me.

Finally, after a bit more of this incoherent exchange that caused us both frustration, I yelled back, “Mommy can’t hear you!”

Just like that, I was brought face-to-face with one of my greatest fears and disappointment: I can’t hear my kid.

I’ve worn hearing aids since I was about eight years old. My hearing loss isn’t anything biological, rather I suffered from nerve damage with no known cause. I wear these tiny machines in my ears because, otherwise, everyone around me sounds like Charlie Brown’s teacher. I’ve always been pretty good about the fact that I have to wear hearing aids because with them, I get to hear.

However, this disability concerned me when we started talking about having kids. Granted, the concern was minimal, but it was there, lurking like the annoying reality that it was. The worry didn’t stem from passing my hearing loss along, it stemmed from the idea that I wouldn’t hear my kid.

I tried to stay as positive as I could with the support from my family but, after my son was born, the fear and anxiety completely took over. I needed to hear every cry, every scream, every holler. Every. Single. Noise. I couldn’t miss anything. If my husband could hear it, I wanted to hear it too.

My husband pleaded with me to just trust him and leave my hearing aids out so that I could sleep, but I couldn’t do it. I wouldn’t do it. It didn’t matter that my son was sleeping in a basinet right beside my bed, there was nothing anyone could say or do that would make me change my mind. I just could not trust anyone but myself, even though I couldn’t trust my ears. (Make no mistake, my husband’s hearing, to me, is impeccable. I believe he’s got super-sonic hearing, but then again, I believe most people have this amazing superpower. They just call it hearing.)

When we moved our son to his crib in his room down the hall, he transitioned like a superstar. I, however, did not. I became more intense. I continued sleeping with one hearing aid in at a time and introduced the video and sound monitor to the madness that was already brewing. It was bright and it was loud and it made sleep harder for both of us. It made a high frequency noise that I am deaf to but that my husband can hear.

Finally, after six months of being neurotic, I gave up control out of sheer exhaustion combined with the realization that I needed to trust my husband and let him hear for me. I know that my husband wants the best for our son and believes in his ability to hear the child if he cries.

Our son is now three and is becoming more and more curious about my hearing aids. We talk about them. I ask him to not touch or splash my special machinery. I explain to him that it’s actually quite painful when he shoves these electronics into my ears. We explain how Mommy can’t hear and that these are magical little devices help me hear what he hears.

Now that we’ve switched to the conversation-style-dialogue stage with our three-year-old, the stakes are higher and the challenges are greater. Not being able to hear him when he has something to say causes an uncomfortable mix of emotions. It’s frustrating and that makes me angry, which then takes the shape of sadness and finally morphs into fear.

Fear. I’m afraid to miss something important.

No matter. This is my life; this is our life. I make the best of my situation and do my best to keep the dialogue open with my son about my hearing or lack thereof. I lip read, and I’m teaching the boy to look at me when he speaks to me. The added bonus to him facing me is that I get to have a child yell in my face while spit goes flying every time he has something exciting to tell me.

Having a hearing impairment does not impair my ability to parent or to listen. It doesn’t impair my ability to be the mother I need to be for my child. Yes, there are setbacks and there are times the frustration can erupt like a volcano, but that’s all stuff we can handle.

No, I can’t hear everything my son tells me, but I will never stop trying. I’m determined to be the mom my son needs, with or without a disability.

A List of Hopefuls for the Film, “Wonder”, From a Special Needs Mom

Special needs is a complex entity, a vast network of exposed nerves that must be treated with care. Please, let this story be treated with care.

“Wonder” is coming to theaters in November. You can watch the trailer here. Chances are, if you have kids anywhere from eight to 18, you’ve already heard the premise, which is based on the best-selling novel by R. J. Palacio.
The tale is about a child named Auggie who was born with a genetic abnormality that caused facial deformities among other things. The story follows his first attempt, as a fifth grader, to attend a real school. School is tough for any kid, but middle school might just be the worst, especially for one who looks different from his peers.
The book changed lives. It encouraged kids and adults alike to peek into the world of special needs and consider that humanity there is much the same as anywhere else. This story gave millions an Auggie-eye view on life, and the movie may do just as much, if not more, to bring awareness to what life looks like for families with kids with disabilities.
It was a best-seller because it spun out a story that anyone could respond to: the need to feel connected and to know that you belong.
And yet, I have mixed feelings. As a mom to a son with cerebral palsy and an off-the-map genetic disorder, I can foresee potential pitfalls when Hollywood takes hold of a story like this. I read the book. I see where things might go.
Special needs is a complex entity, a vast network of exposed nerves that must be treated with care. Please, let this story be treated with care.
The things that made the narrative shine are Auggie’s wit and the voices of his friends. They are innocent, even in their unkindness to each other – something that comes out more clearly in Palacio’s follow-up novel, “Auggie and Me”. It is the parents’ cruelty, the bullying by the grownups, that will make your heart seize.
I hope they do it justice. I hope they show Auggie for all he’s worth and do not downplay what happens when adults hold narrow views of those who look different from them. I hope Julia Roberts can carry the complexities of mothering both a child with special needs and a teenage girl. (I will go watch “Steel Magnolias” and “Erin Brockovich” and let myself be reassured.)
I hope that this movie does not sensationalize special needs. I hope my son does not become the new pet project at school because special needs is “trending up.” I also hope this film does not narrow the field of focus too much.
There are kids who look different, like Auggie, and are brilliant and funny like him, too. But there are also kids who look just like everybody else who struggle with learning delays, speech delays, and global developmental delays and require just as much sensitivity from the world around them.
Ultimately, this movie can do a great deal of good. It can turn the light on in the dark corner of the room where children with special needs should not have to bide their time. It can activate that sympathy and empathy that parents diligently strive to promote in themselves and their children. It can put those good vibes to work.
“Wonder” is ultimately a success story and a reminder to those who do not live in the special needs world that it does exist. It is also a reminder to those of us who do live here that we have not been forgotten. The story, if handled well, will be a reminder for all of us to look on every part of humanity with wonder.

It Would Have Been Better If Kevin Hadn't Come

I think all parents worry that one of their kids is being shortchanged in some way. This fear increases exponentially when you have a special needs child.

I think all good parents worry that one of their children is being shortchanged in some way. This fear increases exponentially when you have a special needs child.
Some days it feels as though everything is about Kevin – keeping him calm, keeping him happy, or keeping him from harming himself and us. There’s not a day, not a single moment, that I don’t worry my girls are being cheated.
We just returned from Universal Studios in Orlando Florida, and what an amazing place, especially for families with disabled children. We were able to bypass all the lines and, not only did the staff allow Kevin to choose his seat on every ride, they weathered each of his outbursts as if it was nothing out of the ordinary.
I planned this trip over a year ago for Dana. It was all for her. Dana is a bonafide “Harry Potter” junky, and I couldn’t be more proud of my self-proclaimed “nerd.” She has sorted each of us into our prospective “houses.” Chris, Papa, Kevin, and I are Hufflepuffs, Godmommy and Dana are Ravenclaws, and Kayla and Grammy are Gryffindors.
I know it won’t last. Puberty is just around the corner and, before I blink, I know the robe, wand, Ravenclaw T-shirts, and Marauder’s Map will be replaced with lipstick, Teen Vogue, and God knows what else. They told me years ago to hang on to every precious moment but, like many parents, I didn’t listen until two years ago when I finally saw her childhood slipping through my fingers.
Two years ago (she was 10), I thought Dana still believed in Santa Claus. I figured it would be the last year, so I planned a vacation to Disney World on Christmas Day. When the kids woke up, the only things under the tree were suitcases and an agenda written by Santa to Dana detailing every moment of the trip. It was all for her – this last Christmas I thought she believed.
We had a great time, but when we got home, Dana sat me down and said, “Mommy, I know it was you. I wanted to believe, but deep down, I knew it was you. Thank you.”
It was one of those moments when you can actually hear your heart break. She knew I did it all for her, she knew I loved her, but my baby didn’t believe in magic anymore. I became cognizant of every moment I’d lost, because I was so busy with Kevin.
This time I wanted things to be different. “Okay,” I thought. “She doesn’t believe in Santa, but she still believes in wizards and witches, so the magic isn’t gone!” This time, I let her plan everything down to the last detail and spent way more money than I should have, but it would all be worth it because for once, everything would be about Dana and what she wanted. For once, my darling girl wouldn’t be in second or third place.
We got home yesterday and, all in all, it was a great trip. But there were moments that nearly crushed me. Everything with Kevin is hard. There were meltdowns in the park where he hit us, screamed at us, bit us, and pulled our hair. There was a tantrum in a restaurant that silenced the whole place. It seemed a thousand eyes were bearing down on us with either pity or disdain.
There was the day he didn’t make it to the toilet in time and pooped all over the bathroom floor, and Dana had to bar the entrance to the men’s room while I cleaned the mess and Chris found new clothes.
I’ve taught my daughters to be honest about what our life is like, but sometimes the truth hurts. For example, our first day in was rough. Kevin was confused, overstimulated, and extremely agitated. After dinner, he finished his desert and then demanded Kayla give him hers. When she refused, he started screaming and hitting her.
Dana’s godmother, who isn’t used to seeing him meltdown like that, politely suggested we bring him outside, and Dana responded with, “Oh you’re embarrassed? Seriously?! Welcome to my life. I deal with this every day.”
Ouch. I’d never heard her say anything like that before. But it was the cold, hard truth, and I understood exactly how she felt.
Our last day we spent swimming in the pool. Chris and I were holding Dana when Kayla swam over to us. (Kevin was with Grammy.) We each put a girl on our back, and Kayla said, half-jokingly, “It’s like we’re a perfect family!”
Translation: We’d be a perfect family if only we didn’t have Kevin.
Then there was the day I caught Dana’s Godmother and my mother talking about me. “I heard you two!” I said jokingly. “What are you saying behind my back?”
But my mother put her head down as if making a confession and said, “I was just saying how, sometimes, when Kevin explodes like this, I just have to walk away it’s so hurtful to watch. I hurt for you and for him, and I just have to get away.”
Ouch, ouch, double ouch.
As wonderful as the late night talks with Dana’s Godmother were, one night she confessed to me, “You have a very hard life. I wouldn’t want it for myself.”
I must have asked Dana a million times in four days, “Is it everything you dreamed it would be?” Every time she replied with something along the lines of, “It is, Mommy, it really is, and if Kevin wasn’t here it would be perfect.”
I can remember thinking, “You know, Dana, all the honesty I’ve heard this week didn’t hurt quite enough. How about we get some lemon juice or salt or something?”
Which begs the question: “Rachel, have you done the right thing encouraging the girls (and everyone else you love) to be honest about their feelings? Shouldn’t you be responding to all these comments with something along the lines of, “Don’t say that about Kevin!”
Maybe.
I’m sure there are those who would say I’ve made a mistake allowing my girls to speak so freely about their feelings and thoughts, but you know what? They don’t have to live the way we do. We’ve had to survive things most people can’t imagine. So yes, we live by our own set of rules over here, and part of that is admitting you’d rather not get slapped in the face in line for “The Hulk” because Kevin wants to go first or telling strangers they can’t go into the bathroom right now because Mommy is busy cleaning poop off the floor.
My girls speak some harsh truths, truths heavy with anger and resentment, but we’ve all learned something the hard way: When you speak those truths, it sets you free to love when loving seems impossible.
I can’t count how many times (after she said she hated him) the following conversation took place.
Kevin: “I hit you!”
Dana: With all the empathy and patience in the world, “Please don’t hurt me?”
Kevin: “I want to!”
Dana: “Okay, Kevin, if it will make you feel better, you can hit me.”
Kevin: “Sawney.”
Dana: “It’s okay, thank you for making the right choice. Let’s go on another ride, you can go first!”
And Kayla, who said we’d be the perfect family if only it weren’t for Kevin and took more physical abuse than any of us, returned every blow with a firm hug while softly whispering, “It’s okay, buddy, I’m here, I’m right here,” as she held him.
What is it she always says? Oh yes: “Bad thoughts and feelings are like weeds, Mommy. You can’t pretend they’re not there. Pull them out by the root and let them die, or they’ll kill everything you’ve worked so hard to make beautiful.”
So we’re home now. Kevin has been so peaceful and pleasant all day, obviously relieved to be where things are familiar. I ask Dana to sit in my lap, and she agrees, which is rare. She’s almost 13 now, and sitting in Mom’s lap is sooooooooooooooooo not cool.
Me: “Why did we go to Universal?”
Dana: “Because you love me, and I love Harry Potter.”
Me: “What was your favorite part?”
Dana: “Getting my Godmother all to myself in Hogsmeade and Diagon Alley.”
Me: “Was it just like you dreamed?”
Dana: “Better.”
Me: “Do you still wish Kevin hadn’t come?”
Dana: “No, I was just mad. Sometimes you have to let yourself be mad or you’ll never be happy, right?”
Me: “Right. I’m sorry he takes up so much of my attention.”
Dana: “It’s okay. He takes up a lot of everyone’s attention, even mine.”
Me: “I love you.”
Dana: “I love you more.”
Me: “Not possible.”
We’re home. Dana is in her Ravenclaw robe, wand in hand, re-reading “The Order of The Phoenix” while munching on a chocolate frog. Her friend just texted to ask how the vacation went, and she replies, “The best time I’ve ever had in my whole life.”

The Kid That Keeps Me Young

“Ma’am, can I help you with that?”
I nod and unkink my back while the boy collecting carts in the parking lot at the grocery store bends down and scoops up my fallen sunglasses. He does it in one fluid motion that reminds me of a surfer riding out a wave. No biggie, man.
It is a biggie to me as I try to stand with the dignity of a young-ish woman. I give up and, to relieve the pressure, lean against the automatic door, keeping it from closing and “letting out all the bought air,” as my grandfather would say.
The boy hands me my glasses, and I place them casually in my hair like I’m not really “ma’am” material. Then I shuffle into the store like an octogenarian and do my shopping, ever so subtly leaning on the cart for support.
I injured myself doing young things. I can be proud of that at least. Biking in Tahoe with your husband should count as a win. Of course, if you’ve got a bad back to begin with and your bike has no shocks to speak of, you should probably use the adult side of your brain and correct course. But it was the first time I had been kid-free in three years – the first time I’d ever left my youngest overnight.
Two whole nights without a clock. I was drunk with freedom.
 
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The ride itself was beautiful, following a river that hugged the edge of mountains dipped in snow. It was the kind of place you expect to spot Robert Redford around every turn. It was good to be young and move my body again, to breathe in the pine scent that grew stronger as the morning warmed into afternoon.
Except, as the grocery kid reminded me, I am not, in fact, young. After a day on a plane, my back seized up so completely that I found myself thinking things I’d never thought before. Things like: “Wow, that’s a long way down to the toilet,” and “If I pick up this dishtowel from the floor with my toe, does that mean I can’t use it?” I had to walk with my hand pressed to my lower back to relieve the pressure. If I had a cane, I would have used it. I’d tie a ribbon on it like women do their purses…chic it up.
My back is still so bad a week after we return that I have to ask the nurse to lift my son out of his wheelchair to weigh him. He’s five years old and 40 pounds and picking him up on a good day is like lifting a gangly calf. We are at the developmental clinic for an assessment so we can start Botox to help relieve some of the tension in his arms and legs. I am optimistic. This will be a new step forward, literally.
But something about the appointment beats down a place in my heart that I thought had been effectively desensitized. Maybe it is rehashing all his medical history. Maybe it is the way the doctor reports her findings to the resident-in-training, sharply clinical without the layman’s words to soften it.
Probably it is when they try to get my son to walk without his braces on his legs, barefoot down the hall. The tiles are cold and people are milling about at the nurse’s station. He has an audience. I move down the corridor to give him an incentive – someone at the end of the rainbow.
As he is about to try his first step, a man, somebody’s dad, comes out of the bathroom and passes between us. It is just a second, just a moment when he cannot see me nor I him, but it is enough. He begins to cry. His feet shake and are already alternating from red to white in turn with the pressure on the floor. He will not and cannot take a step.
I limp to him when it’s clear he cannot get to me and take him from the doctor, lifting him and cradling him in my arms like a baby. We fall into a plastic chair before my back gives out. I blink back tears, my face hidden in the crook of his neck so the doctor will not have to deal with a distraught mother, and we can move on with our appointment. Clearly, Botox would be in our best interest.
I will go biking again, if only to search for Robert Redford. And my son will try to walk again. Some days will be better than others. We will hobble through it together. We may be slow, but we will not stop.
What makes us young is not our body’s ability to do what we ask of it. What makes us young is that we continue to try.

Chasing Our Own Kind of Independence on the Fourth of July

Inside our house, we’re parenting a child with special needs who dreads the Fourth of July more than any other day on the calendar.

For me, the Fourth of July requires a series of pep talks, deep breathing exercises, and yoga poses that are supposed to open your chi or balance the yin and the yang or whatever. I’d feng shui the house if I thought it’d make a difference.
From an outsider’s perspective, this holiday speaks all my love languages: grilling, swimming, setting things on fire. But because I’m not living in a Coca Cola ad, it’s what’s on the inside that counts. And inside our house, we’re parenting a child with special needs who dreads this day more than any other.
It’s too hot, too loud, too exhausting, too technicolor. He cries and covers his head like he’s expecting shrapnel every time a firework explodes. And it might as well be shrapnel, because it blows his life to bits.
 
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Our first Fourth was epic, in all the wrong ways. He was only a few months old and newly graduated from the NICU. For months, his soundtrack had included the instant beeps of the heartrate monitor and the vicious alarms when his oxygen dipped too low. One alarming siren song carried us back through the emergency room after we’d finally gotten him home.
By the time Independence Day hit, we were ready for some freedom. We wanted and needed a healthy dose of good old American normal. We wanted it all – the charred hotdogs, the pool, the sun, and John Mellencamp urging us to “R.O.C.K. in the U.S.A.” against a backdrop of fireworks. What we got was a kid who desperately wanted to be away from any and all forms of stimulus.
He had a tracheotomy and was still learning to breathe. He struggled to drink what felt like thousands of gallons of milk I pumped and fought to bottle feed him. He just wanted to eat and sleep and be left alone. The day was too hot, 85 degrees by 8 a.m., and the grill didn’t work – a fun fact we didn’t figure out until half an hour past starving.
When darkness finally settled, I was at DEFCON 2 approaching 1 and needed a margarita and sleep more than any firework show, so we skipped the hour-drive into the country that would take us to the party scene.
In the years since, we’ve figured out a system of sorts…something to stem the barely contained chaos of the day. We bottle it up as best we can and dole it out in smaller doses, like leftover Halloween candy. We visit the pool at the crack of dawn when no one else is there so my son can achieve a bit of that Zen status that weightlessness brings.
It’s amazing what happens when he can be free of his wheelchair and move. Because he’s breathing easier, we don’t worry so much about smoke from the grill. Because we’re not sleep-deprived, we remember to buy gas for it and actually get to eat the hot dogs. We consider it part of his feeding therapy. We take siestas during the hottest part of the day, like any sane person should.
But we haven’t conquered the fireworks. The jarring noise is too much, shaking the center of him. It’s my unicorn, though, something I want him to learn to chase and embrace. So, we’re trying something new this year. Headphones. A pair of Baby Beats is all I’m asking for this Fourth of July. If noise is the enemy, lure it in and tame it.
He loves the lights, something we’ve verified by trailing every televised firework show from time zone to time zone on cable. Now we just need to make the live thing a little less…lively. I’ve engineered a Spotify playlist of all his favorite tunes and, come nightfall, we’ll be rocking out to the Wiggles.
It may not be Mellencamp, but if it carries him happily to the encore, we will have achieved another piece of the independence we’ve been chasing for him. And that’s the freedom I’ll be toasting with my margarita this year.

Living by the Rules of My Son's Playground Game

I play with Ryan while I still sort of can. No doctor can predict the progression of my disease. But the rules of his game have become something I live by.

“Why are you putting on your tennis shoes?” I ask Ryan, even though I already know the answer.
“So we can go play handball,” he replies.
He grabs the red, bouncy playground ball and runs out the door shouting, “I’ll meet you at the court.” The “court” is a wall near our laundry room.
Ryan is nine and generally plays handball five days a week, twice a day at school. He’s gotten so good that this year his classmates named a move after him. He was the first child to hit the ball so hard it went over the top of the court. Now, when he or anyone else does it, they’ve hit a ‘Ryan.’”
 
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I’m 41 years old and play handball only when I play with Ryan at home. And, I am a disabled parent. Not a parent confined to a wheelchair, not a parent with limited vision or hearing, but a parent with an autoimmune disease that leaves me with intense pain and fatigue in my legs.
If I’m honest with myself and my body, I shouldn’t be playing handball at all. It’s physically taxing for me and, after a play session, my pain is always intensified. But I play anyway because I know there will most likely come a time when Ryan will not invite me to play with him. The days of hearing “Mommy, let’s play” are not infinite.
I play with Ryan while I still sort of can. No doctor can predict the progression of my disease. No doctor can assure me it won’t worsen to the point where I am forced to rely on a cane, walker, or wheelchair. So I play with the hope that Ryan will remember that I did these things with him.
Before the first serve, Ryan always recites his list of rules – rules to ensure that the game is played fairly, and that we’re both in agreement about what is and isn’t allowed.
Ryan may think of these as nothing more than handball rules. I, however, have realized that his rules aren’t just limited to a playground game. Ryan’s Rules for Handball have become My Rules for Life.

The Rules

“No friendships”

In handball, it means my son isn’t going to go easy on me. When we’re on the court, we’re not Ryan and Mommy. We’re two competing players. In life, it means that bad things sometimes happen to good people. No one gets an easy pass.

“No sticky fingers”

In the game, it means you use proper form, keeping your hand in a closed fist. For me, it means remembering to keep proper posture. When pain is bad, I have a tendency to start to curl up, or hunch over, or try to make myself smaller. I’ve been told it’s common for people in chronic pain to do this.

“No cheats”

There’s no getting around it. If I hit the ball and it goes past the line, I’m out. If Ryan hits the ball so hard it goes over my head, I’m out. There’s no trying to talk my way out of it. It’s just a game, after all. In life, it’s more complicated, of course, but the basic idea is the same. Life can’t be cheated.

“Clear re-dos”

Ryan and I play on a wall that has a ledge jutting out near the top. Sometimes, the ball hits the ledge and bounces back and forth like a ball inside a pin-ball machine. That’s when Ryan will call out, “That’s a clear re-do.” So we start again and go from there. Generally, life doesn’t offer re-dos, but life does give us the chance to re-do certain moments, certain situations.
When the pain hits so intensely that I’m tempted to lie down on the hard asphalt and cry, I can’t re-do it. Pain is already there. But I can sit down on a nearby bench, have some water, take some deep breaths. And go from there.

“That made”

When Ryan shouts, “That made!” it means his hit counts. The ball may not have bounced the way he was expecting. He may not have hit it the way he wanted to, but it was still an allowable play. In life, it means my plans haven’t all worked out. Things haven’t gone the way I thought or hoped they would. But life does go on, and I have to readjust my expectations and adapt.
Sometimes, when Ryan and I play, we have a good round. Every time he hits, I’m able to hit the ball back. Life can be like that, too. Sometimes, I can take what comes my way without much fuss or heartache or worry. Sometimes, all I can do is react quickly because something’s coming right at me.
Like a red, bouncy playground ball.