Party Hat

Queen of the Prom

posted Sunday May 1st, 2022



“Well, genetics strike again,” I told Ray yesterday morning as I stepped over a hefty percentage of my shoe collection, finding the one empty square foot of floorspace in our tiny, cluttered bedroom. He looked up from a giant pile of laundry, eyebrows raised.

“Sophie’s not going to her senior prom.”

For once, my genetic reference was not to our daughter’s extra 21st chromosome, but, rather, the rest of her DNA — the stuff we gave both our daughters that makes them short and lovingly slovenly. Apparently our gifts extend to school dances.

Neither Ray nor I went to prom. It’s safe to say we didn’t peak in high school. In the very early days of Sophie’s life, just after the surprise diagnosis, we struggled for some kind of reference point since neither of us had really had any close encounters with people with Down syndrome.

“Hey,” I said one day, shifting carefully to favor my recently C-sectioned abdomen, “at least she’ll go to her prom! She’ll probably be prom queen. Every time I see a story about a person with Down syndrome, they are either bowling or they’re prom king or queen.”

Sophie’s never enjoyed bowling. And last night, her senior prom came and went. I tortured myself a few times yesterday, scrolling through social media to see other parents’ prom posts –  her teal sequins matching his shoelaces; his beaming smile beneath a jaunty straw hat, surrounded by well-coiffed friends.

We took photos at our house, too. Sophie requested a “kitchen prom,” an idea she borrowed from her cousin, whose senior prom was canceled in 2021 thanks to the pandemic.

It felt like a pity party to me, but I kept my mouth shut. Sophie was really excited. Earlier in the day, we found a couple of fancy dresses at a thrift shop. Neither fit quite right. Ditto for Annabelle’s prom dress, which Sophie dug out of her older sister’s closet. Sophie settled for a selection from her own wardrobe, a comfy, casual black flowered dress and black wedges. She demanded a glass of champagne (I scared up a can of sparkling rose and got out our fanciest glasses) and music. We danced to one fast song then one slow song, her head tucked into my chest.

I remember my senior prom. I was at an out-of-town debate tournament, a happy coincidence since it gave me an explanation for not attending other than, “I am a complete loser no one would ever ask to the prom.” Ray recalls staying home and watching zombie movies with his best friend. In the 80s, you had a date to prom or you didn’t go. These days, I’m pretty sure that a lot of kids go with groups of friends.

“It’s okay, I don’t want to go,” Sophie told me when my eyes got wide. “It costs SIXTY FIVE dollars and the theme is Renaissance. Yuck.”

As we swayed in the kitchen to the music, Sophie wrapped her arms around me and sighed a happy sigh. I sighed, too. Closing my eyes and resting my chin on her head. I said a silent “fuck you” to the world, and a “thank you” to this girl who has shown me how to love unconditionally.

And, maybe even more important, how to put on a brave face.


Party Hat


posted Sunday February 27th, 2022



The other day, I was passing through Annabelle’s bedroom when a painting taped to the wall caught my eye.

It’s a watercolor, one of dozens posted all over the walls and doors of the tiny room, mixed in with Polaroid photos and letters from friends,  a small blue structure with a terracotta roof, hovering above a field of green trees, held up with four purple roots. But not just roots to the ground.

Two strong roots pop from the side, as well, stretching toward — something.

My older daughter builds houses from watercolors, fabric, felt, clay and ink. I think it started when she went away to college. Or maybe when she came home, suddenly, in March of her freshman year.

I don’t know why. I haven’t asked. To be honest, I don’t want to hear her answer — just in case it’s not the same as mine.



Party Hat

Lemon Season

posted Thursday January 27th, 2022



I’m really not one for physical pain, but there’s something almost satisfying about the sting of lemon juice on my fingers, a reminder that I really need to leave my cuticles alone. I’ve accidentally run the grater over my hand a couple of times. There’s nothing pleasant about that. And yet, I’ve addressed the overwhelming bounty from my one lemon tree with a singlemindedness usually reserved for thrifting or bingeing Gilmore Girls.

Even picking the lemons hurts — I’m sure it’s something I did wrong that caused the tree to sprout giant thorns. In any case, I spent much of January celebrating lemon season with a grim determination. I gave away bags of lemons, shipped them in boxes to friends in icy climates, made lemon icing, cookies, two kinds of pound cake, bottles of lemoncello. I can’t stop roasting chickens for soup, stuffing the birds with chunks of onion and lemon. I’ve got lemon zest in the fridge, more juice in the freezer.

Really, there doesn’t have to be a metaphor. I live in metro Phoenix. It’s winter. My lemon tree is aging, which means it’s finally producing.

And yet, I can’t help but think that the sour notes feel so right at the moment. Annabelle’s final semester of high school really was bittersweet, in the textbook definition. It was tough to sit through the final dance concert, to send her off to senior prom, and graduation was pretty soggy. Bittersweet, the good mixed with the bad. The launch is usually painful, and that one was, but full of joy as well. Bittersweet.

When it comes to Sophie, thinking about this milestone — high school graduation — stings like lemon juice hitting my fingers, a sour taste on my tongue when I try to lick the pain away. Don’t misunderstand. As with Annabelle, there is much to celebrate.

Just moments ago, Sophie rushed out the door, eager to make her call time for opening night of the school musical. She has a named role, as she’s told me approximately one million times. I never get tired of hearing that. I’ll be honest, even real inclusion isn’t pretty up close — you don’t want to watch that sausage being made. Sophie has fought hard for every moment of feeling like a regular high school kid and she’s left out more than she’s let in. But when she is included, it’s pretty fucking glorious. It’s been worth it.

And now it is ending. She will have to start all over again. This time, there is no community that will be legally bound to include her, to accommodate her needs, even in the half-assed way I’ve witnessed over the last 13 years.

The cliff awaits.

So you can see why I’ve been tackling lemons. I don’t typically do things like choose a word of the year, but a few days before New Year’s I rolled over in bed and the word CONTROL popped into my head. It hasn’t left. I think about it as I stand over the kitchen counter, grating lemon zest and, occasionally, my skin.

I stamp out cookies, simmer a chicken carcass, pack up care packages of lemons, putting off the real tasks at hand. I’m not even sure what those tasks are. I don’t know what to do. I’ve pushed Sophie’s final IEP meeting back several times, demanding all the teachers be present, that someone comes to talk about voc rehab and transitions, even though I have little hope that much will come of it.

As I email her case manager, trying to explain what I hope to accomplish, I think of all the times I didn’t push back in IEP meetings. Trust me, there were plenty of times I pushed. But was it enough? Too much? Sophie really struggles with regulating her emotional temperature. Me too, as it turns out.

I think to myself, maybe I can convince these people that the entire special education system is a farce, that there’s nothing individual about it. I just want someone to recognize it, even though this is not the fault of those with whom Sophie and I interact — the blame lands at a much higher level. We are fooling ourselves when we say there’s anything individualized about any of it. Mostly it’s checking boxes, writing meaningless goals, signing on the dotted line. But at least there’s that. We’ll have Sophie’s IEP meeting next week, finally, and I will have to let go of a system that is flawed — but familiar. After that, she will be one step closer to the void.

Luckily, I still have a few lemons left.

Party Hat


Dear Sophie,

I’m sitting at the kitchen table on the day before your 18th birthday. No one else is home. The dogs are asleep, the cat’s outside and I can hear myself think – not necessarily a good thing.

In a lot of ways, I’m ready for your birthday. I can smell the chocolate bundt cake cooling on the counter and a box of gifts is waiting to be wrapped. Spoiler: You’re getting a bikini — and sippy cups to hold your beloved cranberry juice. I found a sushi restaurant with a patio for dinner tomorrow night so you can order as much sticky white rice as you like, and we’ll spend the day at the pool.

You are definitely ready to be 18, I know that much. You have talked about this day for so long. Birthdays are always a big deal in our house but this one is truly momentous.

Sophie, you are now an adult.

I know this really isn’t about me, but the truth is that I’m not ready for your birthday. Not at all. We decided during the pandemic to give you an extra year of high school, and I’m so glad — a reprieve. But the world is coming for you. And every day, more and more, I realize that the world’s not necessarily going to meet us halfway. Not even a quarter of the way. Maybe an inch.

This morning you swiped one of my legal pads and wrote “to much,” holding it up for me to see. I was on the phone working on a story about disability. You don’t like to talk about that much — or hear about it — and I don’t blame you. Sophie, you are so many things that have nothing do with Down syndrome. You are smart, brave, sweet and silly. You are a good dancer, actor, singer, Yahtzee player, writer, student, friend, sister, daughter and granddaughter. You can hold up your end of just about any conversation. I’m pretty sure if I have to hear the High School Musical soundtrack one more time I’ll stick a fork in my ear, but I appreciate that you are a loyal fan.

When I look at you, I don’t see your diagnosis. I see your newly blonde hair, your pretty skin, my old Birkenstocks you insist on wearing even though they are three sizes too big and the Dunder Mifflin tee shirt you adore. You have topped out at 4 foot 5 inches, but I don’t notice that, either. Sometimes the world does. I watch people try to figure you out. It’s harder with a mask. In a way, the masks have been a gift — people see you before they see Down syndrome.

As much as I can’t wait to see what you do with your life, I’d like to stop time today, the day before you are officially an adult.

I remember worrying so hard when you started kindergarten. In fact, I started this blog to document that year. Someone said, “Kindergarten? That’s the easy part. Just wait.”

Now we are here, and I get it. Kindergarten was easy. This is not. A lot of times, these days, it’s “to much” for me, too.

There won’t be a big birthday party tomorrow; we are all just barely getting out of the house. I promised you a huge bash next year, to celebrate your 19th birthday and your high school graduation. Hopefully we’ll also be able to celebrate your plan, whatever it is — to go to school, work, live at home, move away. It’s your choice, my grown up girl. Your dad and I are here to help, the best we can.

I hope our best is good enough. You deserve that — and more. I know that you want all the opportunities your big sister has had, and why shouldn’t you?  The truth is that if anyone’s going to make it happen, it’s you. You’ve always been your own best advocate and I know you’ll keep fighting for yourself. I just wish you didn’t have to.

You have taught me so much, Sophie. You have made me a better person and in a lot of ways, we’ve grown up together. You’ve raised me — and now, whether it’s ready or not, I know you’ll raise the world.

Happy birthday.



Party Hat

Growing Up

posted Tuesday August 18th, 2020






Facebook memories, you’re killing me.

I brace myself each morning, reminded of how it feels on the rare occasions I leave the house, driving past coffee shops, boutiques and other favorite spots that are currently things of the past. This week it’s all the back to school photos from previous years, my girls grinning with excitement, anxiety or a mix depending on the year — but always on their way out the door, something I no longer take for granted.

I’m okay if I don’t look back, but I’m also not comfortable looking forward, particularly this week.

This week, Annabelle will stuff her car with guitars, art supplies, a few duplicates from my spice rack and a set of gorgeous green and white Syracuse dishware from my overflowing, thrifted collection, and head northwest to Portland for her sophomore year of college. After a lot of hunting she and three friends found a rental house near campus, so the past weeks have been filled with talk of leases, security deposits and the best place to buy a mattress.

I knew it would happen eventually, of course, that Annabelle would live on her own, but I wasn’t expecting it so soon. Annabelle’s never been in a hurry to grow up. I found her sobbing in bed on the night before her tenth birthday.

“It’s all going by way too fast,” she said. I hugged her, thinking, “Just wait.”

Now circumstances none of us imagined have really sped things up, catapulting Annabelle from cushy dorm life to total independence.

It will definitely be a shock after six months of being home. And I really mean HOME. Annabelle came back to Phoenix in mid-March and our household has been in suspended animation even since, with the usual complement of sourdough attempts, family Scrabble games and walks around the neighborhood. I will be just fine if I never see or hear the phrase “silver lining” again for the rest of my days, but the truth is that it’s been wonderful to have her home, to introduce her to movies like Breakfast at Tiffany’s and Valley Girl, let her choose the restaurant for our weekly take-out, watch her dance with her sister in the kitchen and eavesdrop (just a little) on hours-long Facetime calls with her new friends. She rented an upright bass this spring, and if you are going to listen to anyone practice scales, let it be Annabelle on the upright bass. She tends to leave a trail of dirty dishes and unfinished watercolors; I load the dishwasher at least once a day and scoop up her cast-off paintings, hiding them in a pile. Later, when she’s gone, I’ll stare at them.

Sophie and I won’t be along for the ride to Portland. Instead of a weeks-long family road trip up the coast, Annabelle and Ray will make the drive in three days. They’ll bring a cooler of food and camping equipment and pee by the side of the road, trying to avoid people.

I’m happy for Annabelle — as much as I’ve loved this extra time with her, it’s felt like keeping a bird in a cage. She’s got a pile of masks, gallons of hand sanitizer and a good head on her shoulders. I’m concerned, but not hysterical. More than anything, I’m melancholy at the thought that nothing will be easy for her, not like it was her freshman year when kids finished each other’s meals (quite literally — R.I.P. to the Scrounge Table, a Reed College tradition) and piled on top of one another in modern dance. This semester, Annabelle will study solo performance on Zoom, along with most (if not all) of her other classes.

Annabelle is growing up too fast, and at the same time, we’ve pumped the brakes for Sophie, a kid who is always asking what’s next. She can’t wait to be a grown up. Sophie won’t graduate from high school next spring, as originally planned. I’m gambling that the Class of 2022 will graduate in person (and do a lot of other things in person, as well) so we’re giving her an extra senior year. This year will be virtual. I was worried she’d be upset, but she embraced the idea.

As for me, I’m not sure if I want things to slow down or speed up. Fall is my favorite season, it means the Phoenix heat will end in a month or two, and that the holidays are coming. The anticipation is my favorite part, but this year I can’t think about fall. I’m dreading how much different things will be, the parties that won’t happen, the traditions we can’t continue. I know we’ll find new ways to celebrate each other, and that I’ll see reminders pop up next year on my Facebook memories, like the porch portrait our friend Rick D’Elia took this spring.

In a world where the only constant is uncertainty, Ray and I are lucky to have a plan for our daughters, if only for the near future. And yet — well, you know. You’re living through it, too.



Party Hat

Dance with Sophie!

posted Wednesday May 27th, 2020



Desperate times mean it’s time to dance — at least, that’s how it’s been in our house this spring.

Sophie’s working toward her goal of becoming a dance teacher by offering her first-ever dance class! On Mondays, Wednesdays and Fridays at 3:30 pm PST, you can join her virtual class via Zoom.

No experience is required, and she will cover ballet and contemporary dance. Wear comfy clothes and feel free to drop in — you don’t have to come to every session. There is no fee.

Email me for the Zoom link:

Stay safe and healthy, and keep dancing.

Party Hat

The Law of Words

posted Tuesday February 18th, 2020


I’m proud of my girls every day — that should go without saying — but Sophie really blew me away this weekend with her performance at Shoo Flies.

Shoo Flies is the little sister of Bar Flies, a live reading series I co-produce featuring “true stories — and drinks” held monthly at a bar in downtown Phoenix. Shoo Flies is Bar Flies minus the drinks, plus a group of teens writing and performing their stories. The prompt for our first-ever boot camp was “stranger,” and Sophie was the first to sign up. I’m not typically into poetry, but that’s what she wrote for her true story, and like I said, I’m proud.

Here is her piece, unedited, as she performed it live onstage at Crescent Ballroom:


What is going on with the laws of words 

The words are kind  to the people with disabilities

The people the words 

Words speak to yourself

And what they say 

The words can be bad 

What is the law of words 

The words like  the r word 

The musical that my highschool did  was Hairspray   

I went to the directors and say words can be bad take one out 

 The laws of words can be tough in some ways how they think how they wright 

The laws of words how they explain to the world 

How i control  with the laws of words  they have the words in the life of words 

How the words can’t talk to yourself use the  mind to you and the world behind you and have the law of words to yourself  and how the life comes and goes and the law how the people say 

words in the law of words when you think the law of words you have the mind set in  the future and detour has words that can be good we just did Rent and words in the show can be risky  in the laws of words can be hard for people with down syndrome to be thoughtful to yourself and 

other people can hear the air of words they listen to the laws of words and how they listen to it and they have the rights to the words of the laws of words and how they think to yourself

confidence to the mind these words can be bad what i  think what is in my head it hurts what is this pain in my body WHAT IS THIS in my head in my body in my heart ugg what is this pain?

Your words, my words our words.  What is this pain in my body and my head how do i get out of it what feelings  do you have in the laws of words what is this feeling how do i get out of here

Party Hat

Holiday Letter

posted Tuesday December 31st, 2019



Greetings friends and family!

I’m getting this one in just under the wire, as 2019 slows to a halt. It’s extra chilly here in the Arizona desert, and we are enjoying rare views of snow on far away mountains and treasured time with cousins. I had every intention this year of sending a real letter, the kind that falls out of the holiday card envelope, full of news and snapshots. I even commissioned a family portrait — not a photo, since Annabelle has been off at college — by one of my favorite illustrators, David Quan (aka Luster Kaboom) and I must say, my boobs have never looked better. Thanks, Dave!

Ah, intentions. I could fill a whole letter with lists of the blog posts that weren’t written this year, the assignments I didn’t complete, the abandoned chores and tasks and ideas, but who wants to read about that? Instead I’ll tell you what we’ve been up to in 2019, and I hope you follow suit and leave me a comment with your news.

Okay, here goes.

It was quite a year. Annabelle graduated from high school in May, and we celebrated with cake and an epic family vacation, driving round trip from Phoenix to San Francisco. We spent a night at the Madonna Inn (Sophie was not a fan — but you might be, so check it out), twisted and turned up the coast along Big Sur, glamped near Santa Cruz, experienced Fourth of July fireworks in Chinatown and survived a couple of Los Angeles earthquakes (okay, we didn’t actually feel the earthquakes but it was still very dramatic) and generally had a lot of family togetherness. A LOT.

We also traveled as a family to Portland, Oregon in August to drop Annabelle off at Reed College, where she’s now completed her first semester. Reed seems to be the perfect fit (knock wood) for our creative, quiet thinker. She continued her dancing and climbing, took Intro to Drawing and fell in love with a class called “The Cultural Study of Music.” So far, so good. We are thrilled, though we miss her.

Sophie continues to love the stage. Both she and Annabelle participated in Detour Company Theatre’s Mamma Mia in the spring, and this fall she’s rehearsed for Rent, which Detour will perform in early January. Sophie was also cast in the ensemble of her high school’s production of Hairspray — a goal she’s had for a long time. She’s a junior this year and has really hit her stride, taking choir, theater and dance. She’s not a fan of Algebra 3-4, but unlike her mother, she’s taking the class and she’s doing pretty well. She earned a C for her first semester and the teacher’s comment was that she’s not living up to her potential — which, to me, is a true sign of real inclusion. She’s taking advanced dance with a phenomenal teacher and classmates; she will even travel to Chicago this spring with her class.

At this rate, we will all be sorry to see high school end in 2021. Sophie is considering community college in metro Phoenix, or maybe college in a “funky town,” as she puts it, with the ultimate goal of being a dance teacher like her grandmother. She’s already working as an assistant in a ballet class at the studio where she studies. We are very proud of both our girls.

Ray has proven this year that local journalism is far from dead — he’s worked his butt off as news editor of Phoenix New Times, also serving a stint as interim editor, and he and his team have broken several important stories about the environment, crime and local politics. His writers are really lucky to have him — I wish I’d had an editor like Ray when I was a new journalist. He is questioning and encouraging, all the right things in a newsroom leader. And he’s written some great pieces himself in 2019, too. I can’t wait to see what the next year holds for him. As always, he plays as hard as he works, and even with our mid 50s around the corner, one trip up and down Camelback Mountain is not enough — he regularly hikes it twice in a row. Whenever I misplace him, turns out he’s in the garage, Spidermanning up and down his climbing wall.

I will admit that I let this blog get a little dusty this year, but I was still writing. Last January I made the decision to pursue a full time career freelancing. I set myself several goals, most important to only take assignments I really wanted — which sounds like a given, but isn’t. I was lucky enough to be offered a column at PHOENIX magazine, the local city monthly, and I’ve tackled all sorts of subjects so far in Raising Phoenix, including my changing views of the city, attempts at gardening and even Annabelle’s departure for college. I managed to get published in a couple of bucket list places, like Lit Hub and the parenting sections of the Washington Post and New York Times, and did my first radio feature for KJZZ, the NPR member station in Phoenix. I have continued to teach memoir writing at Changing Hands, our beloved indie bookstore, as well as at Phoenix College, and being with the students is among the most meaningful work I do. I’ve continued to co-produce the monthly storytelling series Bar Flies. This year we also launched Fly Paper as a way to bring the literary arts to Phoenix, and we even published a book of essays from the first four seasons of Bar Flies.

I am so lucky to have work that I love, and in 2020 I’ll be focusing on one big project, a collaboration with ProPublica and the Arizona Daily Star, two of my favorite journalism outlets. More to come on that and other endeavors. Work and life continue to collide in meaningful and sometimes painful ways as I report on and write about the transition from childhood to adulthood for people with intellectual disabilities.

Living in the same city as my parents and so many longtime friends is something I appreciate more every year, and a big part of why I’ve come to love my hometown.

Ray, the girls and I wish you health, happiness and, just maybe, a real holiday letter in 2020.



Party Hat

Retail Therapy

posted Monday July 29th, 2019



If you ask the thermometer on my car dashboard, summer is in full swing. But Sophie goes back to school next week so we’ve been washing backpacks, shopping for highlighters and generally returning to reality after several weeks of travel.

Last week the girls and I dragged ourselves away from the beach, moving slowly to the already-packed car.

“One sec!” Sophie called, stopping in front of the hotel gift shop. “I have to say good bye.”

I was confused — I hadn’t bought her anything all week, we hadn’t even browsed together in the shop. But sure enough, the young woman behind the counter greeted Sophie by name, offering a hug and wishes for a safe trip home.

Annabelle and I smiled. Of course Sophie knew the clerk at the gift shop. She must have been stopping in on her way to the pool.

It’s true that Sophie loves to shop. She gets it from me. I like to say that it’s not hoarding if you stick what you buy in cute bins with labels, but the truth is that I hunt and gather like my life depends on it — and my younger daughter has inherited the gene. She knows what she wants: leggings from Target, foundation from Walgreens, goldfish AND cheddar bunnies at Safeway. A new pop socket, a particular brand of sticky rice, crop tops, Vans.

But mostly, I realized this summer, Sophie is shopping for friends.

She’s got her sister, her nannies, her cousins, her father and me. But the truth is that Sophie spends a lot of time alone. There are no play dates (or whatever you call them when you’re 16), no sleepover invitations.

On one level, I would like to torch the entire world on my daughter’s behalf. Sophie is the best friend that anyone could ask for: loyal, kind, interested, loving, fun.

On another, I get it. Sophie is intense. Her love is fierce and she demands a lot more attention than her peers have got to give — or should be expected to offer. If she’s playing a video game with a friend online, she might not understand when that friend needs to take a break. She texts constantly and calls even more often. (My phone rang twice while I wrote this paragraph.) She has trouble with boundaries.

And yet she craves interaction. So who better to befriend than a store clerk — a captive audience with one job: to engage with the shopper.

Funny, it’s been going on for years. But I didn’t realize it till I had a chance to observe each member of my family in action at a store.

At the end of June we drove up and down the California coast and saw so much — beaches, boardwalks, Andy Warhol’s drawings, Katy Perry’s favorite taco shack, the flower mart in Los Angeles, breathtaking views of Big Sur. We glamped in Santa Cruz and survived a night at the Madonna Inn, an acid trip of a hotel in San Luis Obispo that I thoroughly recommend.

But one of my best memories of the trip is the smallest — from a morning in San Francisco’s Japantown, most of which was spent in a tiny stationery store in an indoor mall filled with teriyaki restaurants and boba stands.

I can count on one hand the things each member of my little family of four loves equally and with abandon — standard poodles, Paul McCartney, Irish soda bread on Christmas morning.

And writing materials.

Ray made a beeline for the journals. He examined them thoroughly till he found just the right one, showed it to me, announced it was overpriced, put it back — and parked himself on a bench outside the store to wait for the rest of us.

I scooped up the journal (his birthday was the following week) and snuck it in with the pile of greeting cards, pens, folders and washi tape I had no business buying.

Annabelle stood in one spot for 45 minutes, trying every single shade of her favorite brand of pen, finally choosing three.

And then there’s Sophie.

Before the rest of us were over the threshold she was standing in the middle of the crowded store, demanding the attention of a young woman who worked there.

“Do you have pens?” I heard her ask, even though she was facing an aisle that held thousands. “Mechanical pencils? Can you show me?”

As they walked away I heard her favorite opening line. “I like your sweater. Where’d you get it?”

American Eagle. It seems like they are always wearing sweaters from American Eagle. This young woman had dark blue lipstick and cranberry red streaks in her long, dark hair. She smiled and spent what seemed like forever patiently showing Sophie each brand of mechanical pencil the shop carries.

The clerk tried to offer Sophie a selection of lower priced items, but still my kid presented me with a $25 journal and a $15 pen. She knew better than to ask for the $29.95 paintbrush.

I waited her out and Sophie chose a handful of cheap pencils and a small journal. But she walked away with so much more. I’ll think twice before I say no to the next shopping request.

Party Hat

“Forever Intertwined”

posted Tuesday June 25th, 2019



Today we have a guest post from one of my favorite writing students, Anita Whitely. For her final project in “Mapping Your Memoir,” a class I teach at Phoenix College, Anita wrote a letter. I won’t say anything more — except thank you, Anita. I have learned so much from you.  

I am a recipient of your loved one’s kidney. More than anything I want you to know that I think of you often. I know that it is because of your generosity and honoring the one you lost that I have a life. I want to tell you what it is like being on dialysis. I feel that this is best said in something I wrote for a creative writing class. I will share that with you now.

September 11, 2011, was the first-time dialysis needles pierced my skin. This would continue three times a week for the first five years. It would increase to four times a week for my duration in hell. Dialysis is a medical procedure that replaces the function of working kidneys. Two needles are inserted into the arm, one pulls blood out pumping it into a machine. The machine cleans out toxins and excess fluid, performing the function of working kidneys. The blood is then returned to the body through the second needle. This procedure can take a minimum of three hours. Without this procedure being done on a regular basis, several times a week, the patients will die.

In addition to having this procedure performed, a patient must follow a strict diet including low-phosphorus and low-potassium foods. Phosphorus is in everything, so this limits or eliminates many foods. Potatoes, dairy, anything processed just to name a few. Potassium is in tomatoes and bananas in addition to many other foods that would be considered healthy. The hardest of all is the fluid restriction. 32 ounces a day. Unfortunately, this is not just the fluid the patient drinks. This also includes, but again is not limited to, soup, applesauce, yogurt, anything that breaks down into liquid. This is the basic science of dialysis, all of which has been documented.

This is the information I was given when I started dialysis. There are things no one warns you about. No one tells you about the nausea, vomiting, low blood pressure, and generally feeling like crap. No one talks about them until you’re in the middle of experiencing them. There is also a much more dramatic change, at least there was for me. I found that in time it felt like the dialysis machine not only took everything out of my blood, both good and bad, it also took my sanity, my faith, and my positive attitude. Replacing all these with a feeling of worthlessness, depression, anxiety, and a decrease of my will to live. I can honestly say that I begged God to let me die and end my suffering. I don’t mean just occasionally. I would plead with the Almighty on a regular basis. I was consistently told “NO” it was not my time. No matter how often or how hard I pleaded the answer was still “NO”. I couldn’t understand why I was still here. I had nothing left, I was no longer a teacher, no longer contributing to the greater good, and I felt like I was taking a toll on my family. My family never made me feel like a burden, this was all in my head. I could not imagine what I could ever do that would matter in the world. I had been consumed by my disease. It was hard to find grace. All I could see was dialysis treatments until I died. And in my mind, I would welcome death with open arms.”

By December 2016 I had decided I was not going to live past the end of January 2017. I could feel how much my body was failing, my mind was greatly diminishing, and my spirit virtually gone. I am so grateful that I did not have to follow through on that decision.

On December 9th, 2016 my life started anew. After my surgery my surgeon told me that my donor kidney started working before he could finish my stitches, a highly unusual occurrence. One of my nurses who took care of me after surgery said that she had been doing this type of nursing for over 20 years, and she had only seen such a good match from a deceased donor five times. That’s including me. I never had to return to dialysis. This too is quite a miracle. For most transplant patients they have to return to dialysis until the kidney takes its time to start to work. I could not have asked for a better match. It’s still the most amazing thing to me that two strangers can be so perfectly matched, if only by genetics.

Before my kidneys failed, I was a preschool teacher for over 20 years. I’m very proud of the work I did. I was so pleased to serve the children and families I worked with. But because of an immune system that is now compromised, I cannot go back to teaching. After an organ transplant, the immune system is kept at a minimum. So, because I have a compromised immune system, as cute and endearing as they may be, preschoolers are a petri dish of disgusting germs. That means that I am in the process of reinventing myself. I have to find out who else I am. I absolutely identified myself as a teacher and I couldn’t have imagined doing anything else. I want to contribute to the greater good. Because of this, I have started to develop the skills that would allow me to fulfill a lifelong dream. I always wanted to be, and still want to be, a published author. I want to write children’s books, inspiring stories for young women, and my life’s story. Off to school, I went. I am currently on an academic path that will include an associate’s degree in family development and this will pair well with my first- associates degree in child development. In addition, I am also studying creative writing and American Indian studies.

When you go to school and apply for scholarships and financial aid, you have to have a plan. People keep asking what is my plan, what do I want to do with this education. I answer with great confidence that I would like to work with Native Americans, serving children and families in a non-profit organization. This is my intention. It remains to be seen where life will lead.

For the first time in probably 10 years, I feel like I have my brain back and I can think with clarity. I can manage life, and my spirit is strong. You and your loved one have allowed this to happen for me. You would think because I’m a writer I could come up with some beautiful, eloquent way to express my feelings. I have tried many times both in my head and on paper. It never seems to come out right. I will try once more.

In the morning when I wake up, I open my eyes, knowing I have enough energy and strength to face my day, no matter what it may bring. I pray that God sends you many blessings, it is because of you I will be able to watch my nieces and nephews grow to offer their amazing gifts to the world. I will be able to hold the hands of my parents as they finish their path of life, and to rejoice with my brothers as each one of their children leaves the house and goes off into the world. There are so many experiences that I will be able to have because of you and your loved one. I promise I will never take life for granted. I will always remember that your loved one’s legacy and mine are now forever intertwined.

It is with great respect and immense gratitude that I thank you with all my heart.

(Image of Anita and her dog, Taco, courtesy of Anita Whitely.)  

My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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