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Someone called me a helicopter mom last night with all the malice and anger of calling me a bitch. I’d rather they have just said that; it would’ve been about me as a person and not about their resentment of my relationship with someone else.
No one expects to be a helicopter mom - or a parent to a child with unique challenges, as I prefer to frame it. Did I want 107 days in the NICU? Did I want to spend the first five years of his life dragging him to physical, occupational, and speech therapies weekly? Did I want my child to always be separate and different? No. No parent does.
But that’s what it is. The amount of effort it takes to get him ready each morning is exhausting. Executive functioning is a challenge. Every small thing is a big thing, and some days I want to quit. That’s not an option. No matter how tired I am, no matter how stressed, no matter what else occupies my mind, I have to prompt him through his activities of daily living.
And it’s not just me. We wouldn’t have gotten this far without the love and support of my parents, whose primary role is now that of his grandparents. Our regular caregiver. His team at school.
More than anything, I want to be a regular mom. But I will never be; I can’t be. And I’m not complaining - I don’t know any different so I have nothing to which I can compare it.
I parent as I parent out of necessity, not from a desire to dedicate myself to helicoptering.
Those who know and love me (and him) get it. For those who don’t, may you never face the adversity we have, and be grateful.
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Reflections on a preemie, 11 years later

On this night, 11 years ago, John and I arrived at the University of Iowa Children’s Hospital. I sat in the front seat of the ambulance for the longest 25 minutes anyone has ever endured as we sped from Cedar Rapids to Iowa City. I was helpless as the medical personnel in the back of the ambulance kept my baby alive. I willed the driver to go faster as we drove down Melrose toward the hospital. “Why are you going so slow???” I screamed in my head. Once we arrived, at one of the top three teaching hospitals in the country, they took John - weighing right around two pounds – and got to work, saving his life. I was led out of the room. My parents arrived, and we called the priest. I don’t remember what he said. I only remember being in John’s room and making the sign of the cross. His nurse did too; I don’t know if she was even Catholic, but she made the sign of the cross with us, and I felt better.
I was sent home, told to sleep, to come back in the morning. I did not sleep. I sobbed, begged God – with whom I was not particularly close – to save John. He was so good, so sweet. Take me instead; I’m an awful person.
For a week, I was afraid to leave his side. I worried he would die if I went to the bathroom. I stayed in a guest room at the hospital, scared to sleep at night, so I watched SoapNet – that day’s episodes of The Young and the Restless, All My Children, One Life to Live. I usually managed to fall asleep as General Hospital started. The phone rang around six. “He’s dead,” I thought. His night nurse told me he made it through the night, and the doctors would round later in the morning to discuss his plan of care.
The doctors wouldn’t look me in the eye. They wouldn’t tell me anything in definitive terms. I caught one of the them in line in the cafeteria around 2 a.m. “I need numbers. What are his odds?” I asked. He paused. “50/50,” he said. He took his tray and hurried away. I sat, alone at a table, and ate my watermelon. “50/50,” I thought. At least that’s something.
I just went into John’s room. He’s 11. He’s healthy. His long skinny legs take up most of his twin bed. His stuffed dog, Fluff Fluff, is on the floor. I pick it up and place it next to him. He’s not supposed to be here. He almost wasn’t.
I parent too much; I helicopter. “I didn’t understand why you parented like that until I got to know you, until I heard his story,” a newish friend told me.
I couldn’t breathe for weeks. So many consecutive nights when I couldn’t sleep, waiting for the phone to ring, waiting to be told he was dead. I was in the same hospital. The walk to his room was seven minutes if I hurried. But he would have been gone before I got there. That was our reality.
My parents, my grandparents – they lived it with me. No one else knew I was expecting, let alone John had arrived and was critically ill. It was our experience. No one will ever know what that felt like. No one else will ever love him like we do.
So we celebrate bizarre anniversaries. His birthday. A week later, the day I first held him. The day he got ill. The night he transferred to Iowa. His first surgery, his second, his third – all before he was ten weeks old. The day he moved from Bay 1 – for the most critically ill babies – to Bay 2. When he was discharged from the hospital, 107 days later. The anniversary of the day he got to see a “real” pediatrician, not a doctor at the University as an inpatient. The first day the visiting nurse came to weigh him…she came every other day for the first months home. The first night I didn’t sleep on the floor next to the crib. That was in August. It’s still only May – months until that anniversary.
At night – 11 years later - I still sneak into his room, place my hand on his back as he sleeps. I make sure he’s breathing. I wait until he stirs before silently backing out of his room. He goes through phases where he appears next to my bed at 3 a.m. It startles me and annoys me, but it’s also a relief. He’s alive!
A friend I haven’t seen in years asked about John. “He’s wonderful,” I said. “He’s amazing and perfect in every way.” And I go into his room one more time before I can sleep.
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“I’m scared”

The wallpaper on my computer
“You lost me!” John says of what occurred when he was in kindergarten.
Not quite…at least from my perspective. As was our protocol, I stood outside the front door of his elementary school, waiting for him to come out. He didn’t. Ten minutes after the other students had vacated the building and no John.
I went to his classroom to see if he’d stayed after. I walked out to the playground to see if he was with friends. I asked the crossing guard stationed near the school as she came back to the building. Maybe. Maybe she’d seen him in his little red hat. With some students walking to their after school care provider. Maybe.
And then I lost my shit.
We did everything right. We agreed upon a meeting place. We practiced. We knew the protocol. But something happened, and we missed each other.
FOR 45 MINUTES, I DID NOT KNOW WHERE MY CHILD WAS.
I called 911. (I didn’t know the non-emergency number and was too panicked to find it.) “I don’t know where my son is. Tilford Elementary. He’s five.”
No, his father wouldn’t have picked him up.
No, he wouldn’t have walked home.
He doesn’t know where home is!
I am hysterical now.
This isn’t a typical kindergartner. THIS IS JOHN.
I am not a helicopter parent because I want to be. I am a helicopter parent because I have to be. He is missing! Find him!
It’s Wednesday. It’s Religious Education night. I call the church. Has he walked there with friends? They call me back. No. But maybe someone saw him walking?
Go home. Wait for him there. He doesn’t know where home is! I tell the operator.
I’m overreacting.
Go home and wait for him.
He will NEVER find his way home. It’s not in his skill set, I insist.
I call my mom. “I can’t find him”
I call my husband. “I don’t know where he is.”
My mom. My husband. Even my dad is pulled out of the class he is teaching at the University of Iowa. I CAN’T FIND HIM. I DON’T KNOW WHERE HE IS.
45 minutes. 45 minutes of my heart not beating. 45 minutes of pacing. “Wait at home in case he comes back.” HE DOESN’T KNOW WHERE HOME IS!
45 minutes of seeing his face as the wallpaper on the computer and forgetting to breathe, because I DON’T KNOW WHERE HE IS.
A phone call. The school secretary. We found him. A man was raking his yard and saw him. He looked confused; called the police. A NICE man saw him in his little red hat and called the police. What if it hadn’t been a nice man?
The officer drives him home and offers to let him sit up front in the squad car. John tells him “No! Children never sit in the front seat!”
I am in the driveway. The squad car slows, pulls into the driveway and stops. I am sobbing. I can’t breathe. “I was lost, but they found me, Mommy,” John tells me.
“Thank you,” I tell the officer. “Thank you.”
My mom arrives. Then Marty. Then my dad. None of us can speak. We look at each other, relieved, yet full of terror at what might have been.
I let John have screen time, sitting on the big bed. Curious George. “Hello, Grandmudder. I was lost, but now I’m found,” he says.
St. Anthony. “Tony, Tony, look around…Johnny’s lost and can’t be found.”
That was then. This is now. Fourth grade. We’ve had our routine at this new school since first grade. But the foyer is crowded. Additional students at the new preschool and alternative kindergarten this year add to the confusion.
He sees a familiar face. “Miranda’s mom? I can’t find my mom. I’m scared.”
I feel awful he had to feel that feeling again, that uncertainty.
But Miranda’s mom – my dear friend – takes him, helps him.
“Good job, John. Good work asking for help. I’m so proud of you. Always ask for help. Any of Mommy’s friends will help you.”
And again my chest hurts. Again I can’t breathe. Thinking of what could have happened.
THIS! This is why I helicopter. THIS is why I parent like I do. I didn’t know where he was. I did everything right. BUT FOR 45 MINUTES I DIDN’T KNOW WHERE HE WAS.
Find a friend. Ask for help. Pray he remembers.
He remembered. “I can’t find my mom. I’m scared.”
Thank you. Thank you, St. Anthony. Thank you, John. Thank you, Miranda’s mom, who knew to watch for him and not just her own three.
Thank you, Viola Gibson parents, who know John and love him and will always help him find his way.
#parenting#special needs#special needs parenting#preemies#preemie parenting#preemie power#polymicrogyria#helicopter mom
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Assholes Abound

I love Facebook. I love reconnecting with people from different periods of my life, and I love the memories that come with such connections. I love seeing the cute first day of school pictures and hearing about triumphs and tragedies. Through Facebook, once casual friends have become close friends and I’ve developed relationships with people I may not have otherwise.
But there are always trolls. I see them comment on public posts. I typically scroll right past; there is no sense engaging them and even the most rational argument won’t change minds. But sometimes our friends - or acquaintances with whom we’ve reconnected – turn out to be the trolls. I give them the benefit of the doubt; we all bring different life experiences with us. I explain why their comments are offensive or hurtful. But they keep arguing. I’m “wrong.” My personal journey doesn’t count; they know the struggle far better.
Because of a recent experience, I was moved to post the following on my personal Facebook page:
Rules for being Susan's friend 1. Do not ask if John is an "idiot savant." That term is outdated and offensive. 2. Do not use the word "retard" when speaking to me. Scratch that - don't use that word EVER. 3. Do not tell me updated diagnostic names are "politically correct bullshit." Verbiage is important and words evolve for a reason. 4. If you do not have anything nice to say about the special needs community and what you see as problems in how the system deals with "them," perhaps you should shut the fuck up. 5. If you're not living it, you're not entitled to an opinion. Walk a mile in a special needs parent's shoes; when you're informed, I might care what you think.
I posted it late in the evening, before bed, mainly so I could get it off my chest and sleep. The person to whom it’s addressed will never see it since they’ve been deleted and blocked, but I needed to get it out there. We’ve all been hurt by the words of others. Why is it so hard for us – and I’m guilty too – to think before we speak? When someone tells us “That offends me and I need you to stop,” why do we keep pushing? Do we honestly think we’ll change their mind?
Thank you to my friends who may not have walked the same path but who honor the path I am on. Thank you to those who have let John into their lives and love him too. Thank you for the messages asking “Do I know this asshole that said this about John?!” Thanks for getting it.
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Academics and Real Life
I remember sitting at the kitchen table, my dad ready to assist with my math homework. “Do you have scratch paper?” he’d ask. “No…we’re supposed to show our work. I don’t need scratch paper,” I’d reply. “You ALWAYS need scratch paper,” he’d remind me.
Middle school math was tough. High school math was even harder. While my friends opted for the “advanced” math track, I stuck with the basic classes. Algebra I and II weren’t bad; algebra made sense to me. Geometry was more difficult and I was unsure how it would be useful in the future. I lasted a week in trigonometry my senior year. I’d already been accepted to college and didn’t need a fourth year of math, so I opted to drop it.
Guess what? The only math I use in my chosen career is basic addition and subtraction. If I’m cooking, I sometimes have to double a recipe. THAT’S IT! My sophomore year math teacher straight up LIED when he insisted the proofs forced upon us would be useful.
You know who else lied? All the teachers I had in high school. Biology? Chemistry? Physics? I don’t use any of that. I’ve learned more about the human body from 13 seasons of Grey’s Anatomy than I ever learned in school.
The only lessons of secondary education I’ve brought forward into real life I learned in language arts classes. Then “they” changed the Oxford Comma rules, and I’m pretty much floundering. If I didn’t care about grammar and punctuation on Facebook or attempt to blog…you see my point
Learning to read – that was important. Numbers, sequencing and basic math skills – also necessary. The Periodic Table of Elements? No. How to calculate the circumference of a circle? Not at all.
Perhaps it’s my own fault. I majored in English initially - until my first departmental class freshman year when my classmates saw Christ figures everywhere, and I was, like, “I thought it was about a family going to the grocery store?!” I transferred to the University of Iowa and changed my major to Communication Studies. To be blunt – there were a lot of Big 10 athletes majoring in Communication Studies (if you know what I’m saying). I remember one paper I wrote on second wave feminism in Ally McBeal. Another project dealt with racial representation in NYPD Blue. I never learned advanced anatomy or high level mathematics, yet they gave me a diploma anyway.
Fun fact: I almost didn’t graduate from high school because I failed gym the second trimester of my senior year. I had had it. Basketball and/or volleyball every trimester for almost four years. Two sports I knew I would never play again. Balls coming at my face as I held up my hands ineffectively. I soon learned I could ask the teacher to use the rest room right after attendance, go back to the locker room, change into street clothes and sneak out the back way. That lasted a good three or four weeks until I got busted. They were considered “unexcused absences” and I had my choice of serving one day of in-school suspension or taking an ‘F’ in the class. I argued with the assistant principal it was insane for me to miss three Advanced Placement classes to sit in in-school suspension for a day. Where was the logic? Where was the justice? Yeah…so I ended up with an ‘F’ in PE. It was the only time in my secondary education career I did not make the honor roll. And I had to take TWO gym classes my final trimester.
Luckily I had a different instructor that spring; he let me walk the track every class period while the rest of the group played softball. (Again – balls hurled toward my face are not okay.) He even nominated me for one of the senior awards: “Physical Education Student of the Year.” When he shared his thoughts with the other gym teachers, the one who failed me snorted loudly and said “Um…no.”
My years in the Cedar Rapids Community School District were valuable. I had outstanding language arts teachers on the advanced track throughout high school. I read and I thought and I wrote. I developed a deep appreciation for William Shakespeare. To this day, I’d rather read a Shakespeare play than anything else. I remember Greek mythology far more than how to solve a proof. That basic knowledge – of our culture and our literary legacy – stuck with me more than other topics presented during those years. 25 years later, I remain interested in popular culture and the representations of humanity found in contemporary television and film. I will talk about first, second and third wave feminism, the urban poetry of hip hop music and the misogynist undertones in mainstream media.
And here I am…the parent of a third grader. I attempt enrichment activities with John at home. This summer, I mapped out our days – enrichment from 10 – 10:30 a.m. and wholesome, family friendly field trips and activities in the afternoon. That lasted a day. John looked at me as if on fire and informed me “This is ridiculous.” I gave up. Serenity in the household was more important than math facts.
We ran into his Occupational Therapist at school the week before classes started. “How was your summer? What did you do?” she asked. “I watched a lot of Netflix,” he admitted as I laughed uncomfortably and said “Oh, John…you’re so silly!”
Initially, I worried with no background in education and given John’s unique challenges, I’d somehow mess him up by attempting to “teach” at home. I eventually decided a harmonious family life is far more important than anything else. I truly believe because of his neurological makeup, some things are just going to remain trickier than others.
We read at home. We read a lot. I pepper our conversations with words of wisdom from Shakespeare and Monty Python and Jay Z. “Tis but a scratch!” I insist when he asks for a Band-Aid. He brings up troublesome classmates and I tell him “You’re having problems? I feel bad for you, Son...”
He’s verbal, he has a sophisticated sense of humor and he has heard classic literature read aloud since he was in utero. We read books about baseball during the months he spent in the Neonatal Intensive Care Unit, and his first word was “home run.” He knows more about current events than most nine year olds and cautioned “Donald Trump must be stopped at all costs!” last spring – well before the Presidential nomination was secured
John uses air quotes often in conversation and mentions classmates he feels would benefit from therapy. He’s no dummy. In kindergarten and first grade, I panicked over his nightly homework. How would he get through elementary school let alone middle school and high school? This year, I’m more “Meh…” He’ll be fine. I’m a functioning member of society even without trigonometry. Truly…it’s all good.
The diploma they gave to me anyway.

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Modern Mom Culture: A Rebuttal
I recently read a blog post written by a woman who “just doesn’t get ‘modern mom culture.’” She describes this culture as “love affairs with Target, odes to minivans, and hidden glasses of chardonnay.” She doesn’t understand the attraction of spending three hours in Target and leaving with $300 worth of throw pillows and is dismayed by what a Business Insider piece dubs the “Facebook Wine Mom” - women who proclaim “Hey ladies, I brought the white Zinfandel to the play date!”
I found this piece deeply offensive. First, I never drink white Zinfandel. It’s 2016, not 1989. Secondly, Target is freaking awesome! It has all the things. ALL the things. Anyone who doesn’t find Target shopping an almost religious experience is doing it wrong. Finally, as the mother of an only child, I do not need to drive a minivan, BUT I do feel a twinge of minivan envy when I wave to my friends in their shiny Odysseys and Siennas. (Full disclosure: I can’t parallel park my Nissan Sentra, so me behind the wheel of a bigger vehicle would be scary.)
The writer isn’t wrong – there is a stereotypical “mom culture.” It includes yoga pants, Starbucks Pumpkin Spice lattes and wine…so much wine. Shirts with clever quips and memes proclaiming we “can’t adult today” are also common. But rather than rebel against the stereotype, I wholeheartedly embrace it, tongue firmly in cheek. Yep, I wear yoga pants to school drop off, because doing so increases the likelihood of actually going to class after. (And yoga pants are so damn comfortable. Like a dream.) If I’m meeting girlfriends, chances are I’m swinging by Starbucks first and I’ll #Instagram my beverage just to piss you off. I’m currently wearing a t-shirt with “I’m not a regular mom – I’m a cool mom” emblazoned across the chest, because it’s goddamn funny! Motherhood is a comedy of errors and we must embrace it - stereotypes and all – to save our sanity.
I am fully aware I embody a stereotype, but I “get” the in-jokes - I make the jokes.
Go for it. Don’t fight it. When I make a trip to Target, you better believe I’m checking in on social media and cracking “Where my girls at?” I don’t drink wine daily or even weekly, but if you want to think I do, feel free – real life involves far less alcohol than Facebook would lead one to believe – but the idea of mommies popping the cork at precisely 5 p.m. every day is funny.
Laugh! It’s okay.

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Dancing Queen

Not my actual feet but what a turnout!
“The problem,” I confided to my mommy friends “is I pee a little every time I land from a jump.”
They nodded solemnly in solidarity.
The 24 year old standing nearby looked stricken.

She doesn’t pee a little every time she lands, I bet.
I should back up. “Are you interested in taking an adult ballet class with me this summer?” my friend Megan asked in early spring. It was being offered at the studio where her daughter studied – the same studio where I spent hours taking ballet, pointe, jazz and modern, student teaching and participating in the performance troupe in my youth. Why yes I am! Let’s do this!
I haven’t taken a formal dance class since my junior year in high school though I enjoyed performing with the dance teams in high school and college and even danced with a professional team in my early twenties. I registered for the eight-week summer session as well as a yoga class. Go big or go home!
A few weeks before class started, I ventured into the basement storage room in search of my old dance bag. It took awhile to locate it but I came across other treasures: every college textbook I ever opened; the miniature backpack made from hemp I bought at Lollapalooza 1996, emblazoned with a marijuana leaf. (“I thought it was for Canada!”)
I finally found the vintage hot pink and bright yellow Esprit bag: two pairs of ballet slippers, pointe shoes and jazz shoes. A box of lamb’s wool, stained toe pads. Ponytail holders and a small bottle of ancient hairspray. A 25 year old stick of Extra gum. I threw away the detritus and tried on the ballet slippers; they still fit.
My old leotards and tights disappeared long ago. No great loss – there was zero chance they fit and they were of a very 90s aesthetic. I found some fantastic yoga pants on Amazon and rounded out my updated workout wear with a trip to Target.
I anticipated the first class like Christmas, my birthday and Arbor Day rolled into one. Although the studio had changed location over the years, taking my place at the barre felt familiar. The beauty of the barre warmup is its universal nature. Though the flow of the movements may vary, the barre begins with pliés, moves into tendus, dégagés and ronds de jambe and concludes with grand battements. As we moved to the centre of the room to execute combinations across the floor, I lost some confidence. My center of balance seemed to have shifted and I couldn’t do more than two consecutive turns without stumbling dizzily. Jumps and leaps – always my favorite – were easier than turns, though I had lost some height over the years. Other steps – once automatic – felt unnatural and clumsy.
Though winded, perspiring and exhausted at the end of that first class, I was exhilarated. I took two preemptive Advil but was still sore the next day. I was glad to stretch my tight muscles at yoga that afternoon.
Tonight’s class concluded the eight-week summer session and I feel fantastic. I can now do several turns in succession before my world starts to spin and I almost have my double pirouette back. I’ve regained some height on my jumps and work very hard not to pee upon landing.

I can still do the splits, yo.
I decided to register for ballet class during the academic year and look forward to performing in the annual recital in June. “You’re getting the band back together!” my dad exclaimed when I told him I was dipping my toe back into the world of ballet. Yes. Yes I am. And rediscovered my first great love in the process.

Again, not me but WOW, right?
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John’s Ultimate Sports Bike

My parents gave John a bike for his ninth birthday. God bless him, he never suspected the large item covered by a sheet was a bike - not sure what he thought it was, but he was genuinely surprised. “Oh! Dank you, Grandfodder! Dank you, Grandmudder!” he exclaimed, giving each a big hug. With Marty’s assistance, he rode in circles around their living room. “Wow, John, that’s a really sporty looking bike,” I told him. “It is a sports bike,” he informed me. John has something called /s/ blend reduction. He has difficulty pronouncing “sp-” words, substituting the “st-” sound. So “sports bike” became “storts bike.” I know it’s wrong to kind of love it since we’ve been working with a speech-language pathologist since he was two, but it is terribly endearing. It is so endearing, in fact, I had John FaceTime Marty’s daughter and her boyfriend so they could hear him describe his storts bike.
By the next morning, the bike’s official title had morphed into Ultimate Storts Bike. “It’s a little bit dangerous,” John confided.
Because of the style of the back wheel - sporty though it is - a special extender was necessary to attach the training wheels and would take about a week to arrive at the bike shop. “I don’t need training wheels,” John assured us. Oh hail no! Sadly, John inherited my lack of coordination. I had a lot of trouble learning how to ride a bike and there is a memorable story of me hitting a tree when I forgot how to brake. Training wheels = not optional for John. I told him they would also adjust the bike to make sure it fit him properly which helped him accept the reality of training wheels.
Marty bought John a trike for his fourth birthday, and he was given a scooter and a toddler bike my cousin had outgrown but never showed interest in them. I was legitimately shocked by his enthusiasm for the new bike; I’m sure the stortiness helped.
John’s enthusiasm waned when the bike finally stood - training wheels expertly attached - in our driveway. He clung to Marty, visibly trembling as he tried to lift him onto the seat. He rode, protesting the entire way, to the next door neighbor’s driveway and back. The second outing the next day was the same. John tried to wrap his arms around Marty as he walked beside him, nearly tipping.
The third training session, something clicked. Coordinating the pedaling and the steering had been problematic, but I broke down the physics of steering as simply as possible, illustrating what happened when we turned the handlebars each way. John didn’t run off the sidewalk onto Marty’s beautifully edged grass nearly as much. Pedaling still required some coaxing and cheering, but he was starting to get it. He rode to the neighbor’s driveway - his original goal - but wanted to keep going. We went to the next driveway down, turned around and headed back. As we neared our own drive, John insisted on going further. He managed to steer around the corner and past two more driveways before turning around and returning home. There was much rejoicing and heaps of praise.
John was back on the bike after school this afternoon and did even better. Though he may not graduate from the training wheels this summer, I’m thrilled he pushed past his initial terror, listened to and integrated our suggestions and made progress. Marty and I are incredibly proud. And he is thrilled he’s riding his ultimate storts bike.

#first bike#learning to ride a bike#birthday#kids' birthdays#ninth birthday#preemies#parenting#special needs parenting
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My Man-Cold

I have a man-cold. Initially, I had allergies. They morphed into a cold. I refused to admit it. Once I acknowledged it was indeed a cold, I did what every man does. I insisted I was dying. No one has ever - in the history of colds - had a cold this bad. It’s awful. The stuffed up nose, the coughing, the foggy head, not to mention I haven’t really had a voice for almost a week.
Helpful Hint: Do not go to the PTA meeting at which they will elect next year’s officers when you have no voice. You may end up Vice-President. (I kid. I kid. I would have done it anyway.)
The most important tenet of the man-cold is the refusal to see a doctor. At first, it makes sense. It’s probably viral and needs to run its course. As the cough sets in and impacts the ability to sleep, serious cough syrup would probably be a good idea. But this is a man-cold. No doctors.
It is now late Sunday night/early Monday morning. I feel better than I’ve felt in a week. The man-cold is waning. Maybe another day or two.
Until next year, man-cold, you heartless bastard.
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John’s Ninth Birthday Extravaganza

The birthday favors John shared with his classmates - I’m sure their parents will be thrilled!
John’s birthday countdown begins the day after his birthday each year but kicks into high gear May 1. “Dat’s it! Dey are NOT invited to my birfday party!” John declares whenever someone aggravates him, which is often.
Here’s the thing - he’s never had a birthday party. Yes, we had a big bash when he turned one because we were so thankful he survived infancy, but that’s it. Since John gets overwhelmed easily, the thought of having 20 kids in a confined space is a little scary. Instead of full-blown parties, we’ve celebrated with family or a special friend.
John turns nine tomorrow. He mentioned his birthday party to his stylist during a haircut yesterday. Apparently, he’s talked about it at school since a classmate asked about it at drop-off this morning. Don’t worry - your invitation was not lost in the mail. There is no party. I did order a Spider Man cake, hoping to soften the blow. We’re taking John and a friend to a play at Theatre Cedar Rapids Sunday afternoon. I put together fun favor bags for his classmates and got a “9″ candle for the cake. But no party.
I have several reasons for not throwing John a birthday party:
1. I want to avoid a mid-party meltdown should John become overstimulated.
2. Whether held at our house or at a fun venue, parties are a lot of effort. And Mommy is lazy.
3. I worry we’ll become one of those viral stories that pop up every month or so where no one shows up to the quirky kid’s party.
4. Did I mention I’m really lazy?
There is no school tomorrow, so we’ll have a leisurely morning, enjoy lunch at John’s favorite establishment (Hint: they serve politically incorrect chicken with a side of bigotry.), watch The Sandlot and end the day at Grandma and Grandpa’s house with pizza, cake, ice cream and gifts.
Yes, there will be gifts.
Marty and I were instructed to go to the Northtowne Cycling and Fitness to purchase a good quality, lightweight bike for John on behalf of my parents. I asked my dad for an approximate budget and was simply told “get something nice.” It’s dangerous to send me shopping with “nice” as the only qualifier, but we managed to find a “nice” bike in gray and orange. (Orange is one of John’s favorite colors.) Before we left the store, I spotted a classy bike in hot pink that would look fantastic on me. I lack much knowledge of outdoor pursuits, but apparently there is an entire world of fashion and accessories for bikers. They also have special snacks up by the cash registers. I love special snacks! I thought perhaps bicycling would become our family’s “thing.” We don’t really have a “thing” - sarcasm doesn’t count - so biking would allow us to bond in a non-snarky way while getting fresh air and exercise. I try not to look at price tags too much - I often ask the Von Maur associates not to tell me the total. “Just run my card and let me sign it.” (Sorry, boys, I’m already taken!) The price tags on the bikes were hard to miss. To procure bikes (and accessories) for our little family of three would cost approximately two and a half times what we paid for my first car - and that’s if we are conservative in our spending. For now, John will be the only member of our household with a bike.
I planned to pick up a couple more superhero action figures at Target, but by the time I recovered from the bicycle sticker shock, there wasn’t time to make another stop. John had actually suggested I take him to the store to let him select his own gifts, so maybe I’ll do that after lunch tomorrow.
Lastly, John and I will get matching shirts. Marty and John already have identical They Might Be Giants t-shirts, but I want us to have special Mommy/Johnny shirts, preferably from Raygun. I’m leaning toward these, though I already know Marty will fail to see the humor and try to talk me out of them:

(The children’s version OF COURSE says “Darn it feels good to be a gangster” because family values.)
Happy ninth birthday to my favorite little old man trapped in the body of a small boy. I love you, John.
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Executive Functioning For Dummies

Our household routines are well structured. Every morning, John gets ready for school in the same order - I lay out his toothbrush (with toothpaste already applied) and a washcloth in the bathroom. His clothes and shoes are laid out in his bedroom. Yet, if I told him to go upstairs and get himself ready, I’d find him 20 minutes later flipping through a book. So I stay with him, closely supervising and directing his tasks.
I don’t often tell people how many things I do for John to get him through his day. When I do, I feel their silent judgment. He’s almost nine years old? Shouldn’t he be doing that himself? They aren’t wrong; their child may have been accomplishing their activities of daily living independently since age six. John isn’t most kids, and I especially resent the implication - or being told outright - I’m babying him and that’s why he isn’t as independent as they think he should be.
Few people have heard of John’s neurological disorder. There are a variety of issues that can be associated with it, so when asked, I explain how it presents in John. Specifically, he struggles with attention and focus and has poor fine motor skills. The biggest issue for John - and the thing that makes our routines so difficult - is executive functioning*. Executive functions include impulse control, emotional control, flexible thinking, working memory, self-monitoring, planning and prioritizing, task initiation and organization.
In John’s case, adaptive behavior - everyday living skills and functioning in school - is a pretty big deal. He has a chart inside his locker directing him through his morning procedure - take off backpack, hang backpack, take off coat, hang coat, empty backpack. It’s a great tool, but although he looks at it every morning, he usually forgets it’s there the following morning until I remind him. I put my finger on each item as we tick through them.
Flexible thinking - the ability to think of alternate ways of doing things, integrate new ideas and abandon what isn’t working to try a new approach - is also challenging for John. Other struggles include emotional control - though to a lesser extent than when John was younger - and self-monitoring (the ability to track performance, assess how it measures up to a goal and identify and correct mistakes).
I share this so others understand there is often more going on with special needs families than just their child’s primary diagnosis. Most parents of unique children have put in a full day’s work before the school day even starts. Getting them there without tears (from the child or the parent) is a challenge. Please understand what you may see as “babying” John is me trying to get him through his day with as little stress as possible for an already anxious child. I do encourage independence, and we work on adding new responsibilities to John’s arsenal during school breaks when he has fewer outside stressors. And it’s slow. Someday John will be able to get himself dressed and ready for his day. It won’t be by the end of second grade in May. It may not even be by the end of third grade. Someday.
There will still be some who believe I pamper John. To them I say “Eff you!”
*Excellent resources on executive functioning can be found on the ASK Resource Center’s website here and here.
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My Personal Failure to Rise to the Occasion

Who says you can’t buy (John) happiness?
As parents, we are given multiple opportunities to rise to the occasion each day. Sometimes, we do indeed rise; we teach our children valuable lessons, giving them the tools to become responsible adults and productive members of society. And other times, we can’t even. Tonight was an “I can’t even.”
We try to keep John’s weeknight evenings as uneventful as possible - home from school, have a snack, play awhile, eat supper, read books, bath and bed. This has been a different sort of week with his school music concert Tuesday evening and his last session of Religious Education Wednesday. (John’s attitude regarding Religious Education is a topic requiring three or four additional blog posts - suffice to say he is less than enthused and unlikely to enter the priesthood.) Tonight (Thursday), the Cedar Rapids Dance Marathon group hosted the Miracle Kids at AirFx, an indoor trampoline complex, for an hour of jumping, a pizza party and something called “Lazer Frenzy.” I knew - I freaking knew - there would be trouble adding a third busy night to the week. But I welcomed the opportunity for John to spend time with other children with unique needs. And also I wouldn’t have to cook supper.
The trouble began when I left to pick up John at school. John brings a superhero action figure (or two) every time we go anywhere. His preferred heroes are 12 inches of fully articulated molded plastic. Marvel or DC - he’s not picky; we have them all. His favorite for a long time was the legless Super Man, but lately he’s been obsessed with Spider Man and Agent Venom. John isn’t able to pronounce their names correctly, so we have all come to refer to them (lovingly) as “Styder Man” and “Asian Venom.” Stydy and Venom rode along to school this morning.
And then Mommy effed up. I neglected to bring the mighty duo back in the house after morning drop-off. And Marty took my car on a day trip to Cedar Falls with a former college professor. This occurred to me as I walked out to the garage to drive to school this afternoon.
DISCLAIMER: My father believes I do not need to swear in my blog. He feels I am too good a writer to sully my work with profanity. Thank you, Dad. #DaddysGirlForLife (And also my grandmother reads my blog.) BUT I feel an obligation to all the mommies (and daddies) out there to keep it real. Sometimes - obviously never when the kids are around - we utter the occasional “adult word.” If you are my father or my grandmother, feel free to edit the following in your head.
“FUCK!” I shouted upon realizing what had happened. Thinking maybe Marty had spotted the action figures before leaving and put them away in the toy box, I ran back into the house. Nope. “Shit, shit, shit, shit,” I muttered as I returned to the car. (Please recall: we bought the house from my parents - who did not swear loudly in the garage - and I imagine the neighbors long for those tranquil days.)
John’s narrative regarding his day occupied the drive home, and he shared a litany of complaints during his after-school snack: “I have three problems, Mommy. Number one, I did not like _____ and _____ in my kindergarten class. Number two, I did not like nap time in kindergarten. I tossed and turned and couldn’t sleep. And number three?! You zipped my chin in my jacket when I was in four year old preschool.” You’re having problems? I feel bad for you, son. I got 99 problems...
I reminded him we were off to have fun with our Dance Marathon friends. He ran over to his toy box in the family room to get his “guys” for the car ride. “Where is Styder Man?” he asked accusingly. “And Asian Venom?” “Um...well, John, they are in the car Daddy took.” “WHAAATTT???!!!” he wailed. He threw himself into one of the recliners and legitimately started sobbing, heartbroken. John does have a flair for drama, but this was no act. He was truly devastated to find his two favorite heroes missing in action. One kink in our routine near the end of a busy week unleashed the exhaustion and anxiety he’d managed to keep in check. He slid from the recliner to the floor, keening like a childless mother. I rubbed his back, told him it was okay. Daddy would be home later with the guys.
I managed to get him into the car despite his tears and tried to chat brightly as we drove. “Please be a dream. Please be a dream. Please be a dream,” he lamented from the backseat. “Ouch!” he cried, pinching himself. “It’s not a dream,” he admitted sadly.
“John, after we have so much fun jumping and eating pizza, Mommy will take you to Target to buy a new Spider Man. Then when Daddy gets home, you’ll have your regular one plus a new back-up!” This only antagonized him. “I don’t want a new toy. I want MY toys! I miss my Styder Man and my Asian Venom. And they miss me too!” More tears.
Walking into the building, I gave him a pep talk, encouraging him to “shake it off” and have fun despite the great loss he’d suffered. (I may have sung a little Taylor Swift at this point.)
He had a lovely time at AirFx. He became reacquainted with two sweet twin girls born a few months after him at University of Iowa Children’s Hospital. They chatted while eating pizza. “Now which one are you again?” John asked. (He has always liked blondes.)
Things were good. He had forgotten all about his action figures...until we got back to the car. The mourning began anew. “John!” I said with much enthusiasm, “Let’s go to Target and get a toy. Not another Styder, er, Spider Man, but a new and different toy!” “I don’t want a new and different toy!” he shouted. Whose child was this?! To turn down a new toy?! “Okay...you can pick another special surprise then.” He calmed immediately. “Will there be candy involved?” It was 7:15 on a school night. Did he think I was crazy enough to let him get all sugared up after already being overstimulated from the trampoline place? “Yes! Oh God, yes. So much candy!”
Once inside the store, he decided he wouldn’t mind looking in the toy section...just to see what they had. Well, lemme tell ya’ - that new Ben Affleck as Batman movie may have been a critical failure, but the tie-in merchandise is top-notch. So. Many. Options. We perused the end caps (always the place to start), walked down the superhero aisle, moved more briskly past the Star Wars toys since he received most of those for Christmas, and checked out some weird Power Rangers things. He settled on a Power Rangers blaster, and I was “Oh hail no!” “Because it’s a gun and you’re a liberal and don’t like guns, Mommy?” “That is correct, John. You’re very insightful for an eight year old.”
Back in the Marvel/DC aisle, he narrowed down his choices. “You may get two,” I told him. (They were, like, $8.99 a piece. And I just wanted some peace.) He picked three. “I said two, John.” “There are two, Mom. One...two.” “Dude, there’s one tucked under your arm.” Then I did the thing I should never do as a mother. I caved. “Fine, you may have all three. Let’s just go.” Feel free to judge - I sanctimommied all over myself.
He probably would have forgotten about the promised candy, but Momma needed a sweet treat after that ordeal, so we bee-lined for the candy section before checking out. He selected JuJyFruits. I got Red Vines and an amazing looking candy bar ON CLEARANCE. Because clearance chocolate = winning life. I opened his candy and handed it to him as soon as we got to the car - which made him feel like he was winning life since I don’t let him eat in my car.
I managed to get all three superheroes out of the packaging despite not possessing a degree in mechanical engineering. John was pretty pleased with Reverse Flash and Bizarro. The Hulk not so much, but The Hulk does take some getting used to. A lively and informative discussion on the Marvel Universe versus the world of DC followed.
Then it was time to get ready for bed. I said the prayers and sang the songs and sprayed the Monster Spray around his bed. I told him good night and gently encouraged him to stay in bed. My delicious bar of “crisp kettle cooked potato chips and a hint of sea salt mingled with milk chocolate” called to me from the study, and I did not intend to share it.
Bless his heart - and the melatonin of last resort with which I dosed him - he drifted off into peaceful slumber after requesting I place Styder Man and Asian Venom in bed with him upon Daddy’s arrival home.
So, yes, I totally overindulged John this evening. He was inexcusably spoiled. But if $33.87 (after the 5% Target Red Card discount) made him happy, so what? He’s a really good kid. He’s sweet and affectionate and does his personal best in school. He’s kind and caring and shows genuine concern for his peers when they’re having a bad day. He doesn’t ask for much and he was having a rough night due to circumstances beyond his control combined with exhaustion. So I went all in. And tomorrow when he is reunited with his two most favorite guys, he will have a great time introducing them to their new comrades.

Reasonably happy at last
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#RealTalk Part II

How are you? Everything okay? people ask. It’s what we say when we see someone; I say it at least once a day. Has that question ever been answered honestly?
I got up this morning, took a shower - even put on a little makeup - and volunteered at school. I ran an errand, got back in the car, cried for 20 minutes, came home, yelled at my husband when he tried to give me a hug and slept the rest of the day. I roused myself when John came home from school, asked him to tell me about his day and listened to him read out loud. I’m trying to mentally prepare myself to make it through the rest of the evening. Once John’s asleep, I have some work to do for a volunteer organization - work I should have done a long time ago but couldn’t bring myself to actually tackle. Then I can go to bed and lie awake worrying about how I’ll get through tomorrow.
I was diagnosed with depression in 1994 and do struggle more in the winter months. I know this. I’m always especially blue the week between Christmas and New Year’s, but I push through and - assuming life stays fairly calm - I make it until spring.
This year, something shitty happened to our family in mid-January. It completely rocked our world; as a result I’m more apathetic than usual. I do not care enough to shower, clean my house or answer my phone. I owe people emails and texts and phone calls. I’m doing the bare minimum required to get by. Typically, this would drive the perfectionist Type-A me crazy, but I don’t care enough at this point. The absolute only thing I care about is making sure John feels happy and loved. He seems oblivious to the changes in our lives. John is the only reason I’m awake more than an hour a day.
The minute I realized I was sliding, I scheduled an appointment with my doctor who increased my medications. I see my therapist and sit in front of one of those lights waiting for my mood to improve. I text or chat with a few close friends every couple of days and I try - most weeks - to attend at least one MOMS Club event so I take a shower and remember what it’s like to interact with people if nothing else.
I’m trying to work through this; I tell myself it’s a blip and things will turn around. I’m not sharing this for sympathy or attention - I’m putting it out there because if you call or text or email, there’s a 97% chance I won’t respond. It’s not you; it’s me.
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A Tale of Two Recliners

The recliners that don’t suck
When Marty and I began co-habiting, we put the sofa and chair from my condo in the living room and selected new items for the basement family room. We’re both of below-average height, so it was important to find what my mother and I term “short people furniture.” (I often feel like I get sucked back into the over-sized chairs and sofas that are popular; the struggle is real.) We found a simple, elegant sofa in a soft blue with espresso colored wooden legs. It sported blue and brown accent pillows, so we thought an espresso or a light coffee colored chair would look sharp. Marty discovered a deep brown leather chair in the irregular/sale area. It actually fit both of us fairly well; my feet almost touched the floor! The only problem - it was a recliner. I have attitude about recliners. They have a negative connotation in my mind and loose associations with elderly chain smokers.
“Nooo...” I told him. “I don’t think so. No recliners.”
“They don’t even look like recliners,” Marty claimed.
“But I’ll know. I’ll know.”
Marty found an identical companion chair on the regular sales floor - it was a little more expensive since it didn’t have a flaw in the leather like the first, but he seemed pretty pleased with the chairs and talked me into them.
The sofa and chairs were delivered to the Vinton house and arranged in the basement, waiting for us to replace the pet-scented carpet and redecorate. But we never did. The sofa remained wrapped in plastic the rest of the time we lived in the house, and we never bothered to re-carpet since we had an eye on moving back to Cedar Rapids. In fact, I can count the number of times I was even in the basement of that house on one hand. I don’t think John ever even went down there.
When we moved to our new home, we put that furniture in the first floor family room. The recliners aren’t particularly attractive, but I added throw pillows to jazz them up a little.
And I saw the light. I converted to the ways of the recliner.
They are so damn comfortable. All I have to do is sit down, push back and - BOOM! - I’m asleep. They’re roomy enough I can tuck John in next to me to snuggle.
“I was wrong,” I told Marty. “Recliners are awesome.” It may be the first (and last time) in our marriage I admit to being wrong; I hope he enjoyed it.
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John’s Favorite T-shirt

I got a little smug; I’ll be honest. Eight and a half years, and John and I have never argued about his wardrobe. He wears what I lay out - not necessarily because he’s unusually compliant, but because it hasn’t occurred to him to voice an opinion regarding his daily ensemble. I will admit to acting a bit Sanctimommy when I saw a mother drag her tutu-over-flowered-leggings, purple cowboy boots and glittery unicorn top-wearing daughter into Target. I expressed sympathy when mommy friends bemoaned their sons’ refusal to wear anything other than athletic shorts, even in January. “No, John and I never disagree about his clothes,” I’d respond confidently.
Like a Greek hero punished by the gods for excessive hubris, it seems the golden days of harmoniously dressing my son have ended. John has a favorite shirt. I bought it for him to wear to his school Valentine’s Day party last year. (As one would expect, I found it at Target.) It’s gray with black sleeves and has Captain America, Thor, and Spider Man emblazoned across the chest. “Chicks dig super heroes” it announces.
And John is freaking crazy about it. “I love dis shirt!” he exclaimed when I put it on him a couple weeks ago. “I love Captain America and Thor (He pronounces it Four.) and Spider Man. Why isn’t Spider Man an Avenger, Mommy? They’re all friends though, right? Right, Mommy?”
As he took it off at bedtime, he declared “I want to wear this shirt everyday!” I thought he’d forget about it, but the next morning he asked “Can I wear my very favorite shirt?” I told him it was dirty, so I’d have to wash it. “But Mommy,” he explained, “Chicks dig super heroes.” #MicDrop
I’ve managed to dissuade him from wearing it to school daily, but it has involved diplomacy and concessions. Christmas break officially starts Monday, and I am prepared to accept my title as Da Best Mudder Ever when I let him wear it everyday over break.
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#RealTalk

The woman ugly crying over this outfit at Target? Yeah, that was me.
“I wonder what it would be like?” John mused as he soaked in the bathtub.
“What what would be like?”
“To have a brudder or a sister.”
John is an only child. Most of the time, I convince myself he’s an only child by choice, though that’s not completely true. The trauma surrounding my pregnancy, John’s birth and infancy, as well as my doctor’s advice to “think real hard” before having another baby scared me straight.
I was fine with that. I met Marty when I was 35. He was 48 with two adult children. I considered it a miracle he was willing to start over with a then-three year old. Although we discussed it briefly, we decided our blended family was perfect.
Twice a year I do get a little angsty. Seeing all the fantastic family-themed costumes on Facebook each Halloween is difficult. I’d love to have my own little Star Wars-costumed family unit. (Is there anything cuter than a Baby Yoda? The answer is no. No, there is not.) The pre-Christmas season can also be rough. A dance studio in town produces a glorious Nutcracker each year, and it breaks my heart seeing all the tiny dancers in their adorable tutus.
One would think I would have wanted a little girl with my love for all things pink, frilly, and overtly feminine, but I have always wanted a little boy. It’s like that Sex and the City quote: “So all I have to do to meet the ideal man is give birth to him.” I know the strongest bond in the world is that between a mother and her son. I have that.
Recently, I’ve acknowledged I really, really want another baby. My pregnancy was not fun; I spent the majority of it curled up on the bathroom floor between horrific bouts of vomiting. (See! Kate Middleton and I do have something in common!) The nearly dying in childbirth was less than ideal. John arrived early – a micro-preemie – and suffered so many complications as a result.
My research indicates I would likely face similar issues with another pregnancy; my doctor said the chances are as high as 75%. I’m also now of “advanced maternal age.” There’s a good possibility HELLP Syndrome would set in prior to 30 weeks, and I’d deliver an even tinier preemie. A preemie smaller than two pounds five ounces would definitely be in for a rough time. Even eight years after John’s birth, I feel intense guilt over all he went through, and putting another baby through that is unimaginable. Most frightening, if I do experience HELLP again, it would probably be even worse than before, and I may not survive, leaving John, Marty and a teeny tiny baby behind.
These are all logical reasons why I won’t have another child. It’s the rational thing, and I acknowledge it’s the right thing. There’s still a sense of loss for something I’ll never have. It isn’t easy watching others have babies – especially when they’re casual about their health and medical care. Childbirth is one of the leading causes of death among women of childbearing age in the United States. Women don’t take that as seriously as they should. I respect the desire for birth plans with minimal interventions, but I know from experience things do not always go as anticipated.
It’s hard for me to be around pregnant friends. I’m happy for them and wish them healthy pregnancies, but it is difficult knowing I’ll never experience one myself. “Difficult” is actually an understatement - sad, lonely, and depressing are more accurate.
I continue to haunt the edges of the baby section at Target or Von Maur and seek out onesies with subversive messages online. I try not to be sad or resentful about my perceived loss but instead focus on John and all he has given me.
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‘Tis Thanksgiving Time

I present the Bednar/Blind Family 2015 Thanksgiving Menu.
Thanksgiving? I can take it or leave it. While I enjoy a well-prepared turkey, mashed potatoes and gravy and dressing leave me cold. Sweet potatoes? I can’t even. The fairy tale we’ve created around the Pilgrims, Indians and first Thanksgiving is fictional and exploitive. And forced #thankfulness is lame. Let’s all write what we’re thankful for on a leaf and create a festive tree o’thanks! More like “No thanks!”
Growing up, we didn’t have a traditional Thanksgiving destination, so maybe that’s why I don’t feel a real connection to the holiday. I remember a Thanksgiving with my dad’s side of the family when all the cousins made Pilgrim hats, which was legitimately charming. I remember various family members coming to our house to celebrate over the years, but there was never a consistent THIS IS THANKSGIVING tradition.
And then I met Marty. Thanksgiving is Marty’s thing. “If you want to see me on Thanksgiving, you need to come to my house,” he always says. Menu planning begins in late August. Once it’s refined, copies are distributed to guests electronically. The menu is not simple. There’s turkey and dressing, a cranberry accompaniment of some sort, whipped potatoes and gravy, sweet potatoes (but not a marshmallow in sight because #FoodSnobs) and pumpkin pie, of course. Marty has great respect for tradition. Being Marty, however, means he has to take everything food-related next level. Brussels sprouts au gratin aren’t too far outside the box, but he does a formal soup and salad course too. We enjoyed chipotle butternut squash soup last Thanksgiving, and I think that’s the delicious plan for this year as well, though I managed to convince him to let the salad course go. He likes to do two desserts – one traditional and one a bit avant garde – but we’re limiting it to pumpkin pie this year. (And by “we,” I mean I gently requested Marty not go quite so crazy for the sake of my sanity.)
Yes, I’m lucky I can relax and visit with our guests while Marty works hard preparing the Thanksgiving meal. I’m fortunate to never have to be the one to worry if the turkey is dry or if everything will come together in the end. It’s lovely.
And then there’s the clean-up portion of the evening. When Marty cooks, he destroys, er, utilizes all surfaces in the kitchen, as well as every pot, pan and utensil available. Last Thanksgiving, it took me seven hours to return the kitchen to its pre-Thanksgiving state. Seven hours.
Of course, the big kids offered to help. They cleared the table, etc. Once everything is in the kitchen, though, there’s really only room for one person to work. With my OCD, I needed to handle the majority of the clean-up myself, because I’d just have to redo it otherwise.
So last year I washed and wiped and put away for seven hours, which is why I encouraged Marty to scale back this year. I wasn’t able to get him to agree to paper plates and plastic cutlery, but he did tone down the menu somewhat. My goal for Thanksgiving 2015: limit the clean-up to four and a half hours maximum.
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