Search results for 'lexi'

Mess

7 Oct

I hate mess. Clutter is my enemy, and I spend an inordinate amount of time picking shit up off the floor. When I’m anxious, I don’t pour myself a large glass of Syrah—I run around the house with the Swiffer. The scent of bleach during a good bathroom scrub calms me right down.

Children react to trauma in different ways. I blame my boomer childhood (particularly my poor alcoholic dad) for turning me into a semi-psychotic clean freak. Like my father, I was born an introvert, and our family’s generational trauma and dysfunction only added to my need to find peace. My bedroom became my safe haven—an orderly space filled with light, plants and books. I could close my door, open the window wide, and breathe—away from the football game blaring on the television. Away from the cigarette smoke. Away from the festering rage of my dad.

Unfortunately, life is sometimes a little messy (actually a lot messy! Pandemic, anyone?) Let’s just say that over the past couple of years I’ve had to learn to be more flexible—to welcome change instead of resisting it.

Case in point: Two weeks ago, my daughter, Leah and her husband, Jeff moved in with us. They wanted to get out of Los Angeles, and try to save some money to buy their own home someday. We have the room; we love having them around. It was a win-win.

First let me mention that Leah leaves me in the dust with her masterful skills at organizing. She’s a diamond chip right off the ol’ block. But filling a dumpster of decades of accumulated crap, while combining two households is a massive undertaking. Then there was an epic yard sale. For several long weeks, the house and yard were a mess. A HUGE MESS.

I didn’t freak out. I didn’t get anxious. Well, maybe I got a little anxious. I repeated my mantra, “This too, shall pass,” while reassuring Leah that I was not bothered by the chaos. To be honest, it was difficult at times, but something my therapist said really turned it all around for me.

“You know,” she said, “You might want to consider that every open cardboard box, or every pile of stuff left out, or every item out of place—is a reflection of their love for you—that they feel safe and comfortable enough to move in with you. That’s pretty wonderful.”

That’s why we have therapists.

It is indeed wonderful. The house is put back together, and trash has all been hauled away. We are an organized home bursting with people and animals, but life is fuller than I ever imagined it would be (no pun intended.)

And should I begin to feel anxious, my Swiffer is right within reach, hanging from its very own special hook on the wall of our newly remodeled and organized laundry room, compliments of Leah.

Awareness

3 Jul

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I’ve always thought of myself as a flexible person, but the truth is, change is difficult for me. I’ve enjoyed an easy, comfortable life where I can pretty much go anywhere, do anything, or speak my mind freely without anyone questioning me. I don’t have to worry that I’ll be stopped and questioned by the police because of the way I look. My white privilege has offered me more opportunity than people of color. As a woman, there have been times in my life when I’ve experienced sexism—and even been afraid, but I’ve never been discriminated against because of my skin color.

I recently published my novel, LOST IN OAXACA, where my protagonist, a white, privileged piano teacher named Camille, travels to Mexico in search of her missing protégé. Unable to speak the language, Camille finds herself literally lost in the mountains of Oaxaca, where she must rely on others to help her navigate not only the remote mountainous terrain, but an unfamiliar culture as well. For the first time in her life, Camille is the different one. Yet, instead of encountering racism and hate, she is given guidance, care, acceptance, and ultimately love, by those who are not offered reciprocal treatment back home in her world. She thus begins the difficult process of acknowledging her privilege and opening her mind to becoming aware.

This shift in awareness is the first step in becoming anti-racist. If we allow ourselves the chance to shed a single incorrect belief in our minds, we can move on to shedding another. Then another—and so on. When we finally realize that the story we’ve been taught for so long is not true, we can make real change in the direction of equality for all. I’ve said it before, and I’ll say it again: it’s up to those of us who benefit from white privilege to fight for those who don’t. We can’t stay silent any longer.

I know I have much work to do. I’ve been way too comfortable for far too long.

I won’t tell you what happens to Camille; you’ll have to read the novel to find out.

                           Let’s just say that nothing is ever really lost.

 

Nesting

3 Jan

img_0264During the past three decades, I’ve been fortunate to have given birth four times. Each time, right around a month before each birth, I would find myself knee-deep in a frenzy of cleaning that would put Marie Kondo to shame. Nothing would escape my attention. The contents of drawers would be dumped out and  rearranged with categorical precision. Closets would be cleared out, baseboards scrubbed, and lampshades vacuumed. Bags of discarded items would be carted away to Goodwill. By the end of the day, my muscles would ache from climbing up and down the step ladder to swat at the lace cobwebs hanging from the crown molding—cobwebs that I hadn’t noticed since before the birth of the previous child.

The term for this behavior is called nesting. Usually, it’s the expectant mothers who do the nesting as a preparation for the coming baby, but I’m sure some expectant fathers do it too. It’s a chance to put the house in order before the chaos of a newborn turns everything upside down.

Well, the odds are that a fifty-eight year-old, post-menopausal woman isn’t pregnant, so why is it I’ve spent the last five days manically cleaning and organizing my entire house from top to bottom? I believe it’s because I’m about to give birth again, but this time, to a different kind of baby. And I’m as terrified and excited as I was thirty years ago when I had my first human child.

The due date for my new baby, Lost in Oaxaca, is April 21, 2020. And after a seven year confinement, I am so ready to relieve myself of this heavy load and launch her out into the world. (Okay, Jess—enough with the pregnancy metaphors.)

And I’m sorry to admit that like most new mothers, I’m going to start talking about my baby a lot. You’re going to see many photos of me and my baby on Instagram and Facebook. I’ll be writing so many blog posts about Lost in Oaxaca that you’ll start wishing that I’d just get lost in Oaxaca.

Here’s the dilemma: in this current era of publishing, it’s really up to the author to be responsible for promoting their book, which means I’m going to be doing some plugging. I’ll try my best to do it well and not too often. Luckily, I have three Millennials and a fifteen year-old Gen Z to help me navigate the complexity of posting on social media, so I’m hoping that my incessant promotion will turn out to be stylish and tasteful. In any case, my youngest will grudgingly help me. She’ll roll her eyes and call me “Boomer,” but since I gave actual birth to her when I was at the ripe old age of forty-two, she kinda owes me a favor.

Oh—and by the way—you’re all invited to the christening for Lost in Oaxaca at Chaucer’s Bookstore in Santa Barbara! Book signing is Wednesday, April 29, 2020 at 7:00 p.m.

And don’t worry about forgetting the date—you’ll be getting a birth announcement in the mail.

Now, if you’ll please excuse me—I’ve got to go scrub the inside of the water heater.

 

I’d love it if you’d stop by and visit!

www.jessicawintersmireles.com

Facebook: https://www.facebook.com/jessicawintersmireles/

Instagram: https://www.instagram.com/jessicawintersmirelesauthor/

Signs

7 Jul

june 5 flowers 8The other morning I was in a deep funk. I hadn’t slept well because I drank a cup of coffee around eight o’clock the night before thinking it was decaf. Big mistake. I’m sure at one point or another everyone has experienced that horrible feeling when you’re lying in bed and your body is tingling and your brain won’t stop analyzing and nitpicking. I didn’t fall asleep until almost dawn.

I woke up exhausted, crabby and shrewish, just to name a few—although I’ve no doubt my family could come up with an enhanced list of unpleasant adjectives that would better illustrate my mood at the time. I yelled at my daughter, glared at my husband and worked myself into a hot mess of resentment and dissatisfaction. Good Lord—I figured I’d better get out of the house before I killed someone. I quickly pulled on my tennis shoes and went for a walk.

For a couple of miles I wallowed in my rage and discontent—everything sucked, nothing was fair and nobody cared. The grievances whirled and foamed in my head until they formed stiff peaks.

Then I ran into an old childhood friend who was visiting her parents for the holiday weekend. Over the past few years she’s been dealing with some serious, life-threatening health issues. I immediately felt ashamed. Here I was, grumbling over nothing, when she had to worry about staying alive. I took a deep breath and decided to change my thinking.

I began to feel a little better on the way back home, finally taking notice of the beautiful summer morning that spread out before me like an overflowing smorgasbord of color. I passed a house with a jumbled yard full of trailing vines, flowering pots and whimsical garden ornaments. And right there in the front yard was this sign:

be grateful

“Whoa,” I thought, stopping in my tracks. The universe had given me a sign. Literally.

Always be Grateful. Such a simple concept, yet one we often have the most trouble understanding.

At that moment I decided to spend more time finding things to be grateful about—to appreciate what I would normally  take for granted. I’ve documented a few of them to remind us that those small, insignificant things are what make our lives meaningful.

From now on, I’m going to pay attention to the signs.

My husband, Rene and daughter,  Isa holding hands while watching a World Cup Soccer match. The blanket covering Rene's legs looks like a smiling face.

A Sign of LOVE. My husband, Rene and daughter, Isa holding hands while watching a World Cup Soccer match. The blanket covering Rene’s legs looks like a smiling face.

Out of the blue, my dear friends Michele and Julie invited me to a Joan Baez/Indigo Girls concert as an early birthday present. It was magical.

A Sign of FRIENDSHIP. Out of the blue, my dear friends Michele and Julie invited me to a Joan Baez/Indigo Girls concert as an early birthday present. It was magical.

A print my son, Nino made in one of his art classes. Profound words.

A Sign of PROFUNDITY. A print my son, Nino made in one of his art classes. I will choose wisely.

My daughter, Isa and my nephew J.J. hanging out on the couch. J.J. would not be here if his older sister Gillian had lived. Isa would not be here if she hadn't survived her leukemia. Take nothing for granted.

A Sign of MIRACLES. My daughter, Isa and my nephew J.J. hanging out on the couch. J.J. would not be here if his older sister Gillian had not died. Isa would not be here if she hadn’t survived her leukemia. Take nothing for granted.

A Sign of detailed complexity. The sun shining on the bench outside my music studio.

A Sign of complexity. The sun shining on the bench outside my music studio.

A sign of continuously changing beauty.

A Sign of BEAUTY. The garden is a constant source of changing beauty.

Now it’s your turn to look for YOUR signs.

Dia de los Muertos (Day of the Dead)

1 Nov

Today is the first day of November: All Saints Day or Dia de los Muertos (Day of the Dead). It’s the perfect opportunity to remember those who have left us and reflect upon how much they meant to us.  Just by thinking of them today, we can keep their memories alive in our minds and in our hearts.

Our Dia de los Muertos  Altar 2013

Our Dia de los Muertos Altar 2013

Colorful skulls and pan de muerto

Colorful skulls and pan de muerto

Flor de Muerto (Marigolds)

Flor de Muerto (Marigolds)

Making fun of death

Making fun of death

Cancer took them too soon...Rosie, Jessi, Jeffrey, T.T. and Lexi. R.I.P little ones

Cancer took them too soon…Rosie, Jessi, Jeffrey, T.T. and Lexi. R.I.P little ones

Resting in eternal matrimony; Hermelinda Chimil  and Elias Mireles

Resting in eternal matrimony; Hermelinda Chimil and Elias Mireles

Precious Gillian Winters

Precious Gillian Winters

Skeletons and more skeletons...

Skeletons and more skeletons…

Grandpa Joe

Grandpa Joe

Time to Remember

23 Oct

I almost didn’t do it.

Halloween will be here soon, and we had already decorated the front porch with strands of cottony spider webs and dangling skeletons. We’ve been planning our costumes for weeks now and a tiny witch’s costume and black hat dangle spookily in the closet when it’s not being tried on over and over again. Bright orange pumpkins, swollen with seeds, sit on the hearth waiting to be hollowed out and turned into grimacing goblins.

It’s that season again, when the days shorten and the change of light paints shadow pictures on the sidewalks as the sun settles lower in the sky. I knew that there was still one thing left to be done, but I thought that I just didn’t want to do it again this year. My husband, Rene still hadn’t brought it up, so I figured that we just weren’t going to get around to it.

Selfishly, I was relieved that he hadn’t said anything, because I just didn’t feel like digging through the shed to look for all the boxes. The thought of having to sift through all of the stuff was more than just a bit overwhelming. Besideswhy do I always have to be the one who does everything around here?

Then last Saturday evening, my oldest daughter, Nora said, “Mom, I’m going to set up the altar—want to help?” and I suddenly realized that I did want to help.

We moved tables and covered them with white cloths; we emptied boxes of candles and vases and arranged them around the centerpiece of a grinning papier-mâché skull. My daughter Isa and her best friend, Tali helped tape tissue paper onto an arch that stretched across the window in a rainbow of pink, orange and yellow flowers. Lastly and most importantly, we lovingly dusted off the photographs and placed them on the altar. The following day, we took a trip to the farmer’s market and bought bunches of fresh marigolds and gladioli and came home and filled up the vases.

Isa and Tali helping to set up the altar.

The altar was ready for Dia de los Muertos. It’s time to remember.

I’d been trying to ignore the importance of this celebration because I’d been thinking all along that it’s only for Rene that we do it each year. After all, it’s his Mexican culture, not mine.  Yet in the process setting up the altar; through the act of looking at all the photographs of the people who have died and really thinking about them, I always realize how important this celebration is to me.

Time has a way of robbing us of that deep connection we once had with our loved ones, no matter how devastating their deaths were to us. People die—even children die—and yet somehow life manages to continue on no matter what. Our memories fade and those of us who are still here on this earth tend to let those memories slip into the recesses of our consciousness. As we move on with our lives, we forget to remember. And in forgetting, we lose that sense of emotional connection that we once held so deeply in our hearts.

I want to remember these people because in doing so, they continue to stay alive.

Lexi died last February, so this is the first time she's been placed on our altar.

Lexi Krasnoff died last February, so this is the first time she’s been placed on our altar.

Rosie Chavez was a star who still shines brightly on our altar. We left her some red lollipops.

Michael “T.T” McGrew and Jessi Modeen both died from their cancer. I never met Jessi, but found out after Isa was diagnosed that her mother, Denise used to live three houses down from us and I babysat her when she was a child. She always loved my name, and gave it to Jessi when she was born.

It’s impossible to forget little Jeffrey Zamora! Rene’s parents, Herlinda and Elias Mireles watch over him in the background.

Our altar at night with all of the candles lit. My dad is right above the skull.

Our precious Gillian Winters.

Cancer Causes Love

26 Sep

On a recent sultry September afternoon, I watched happily as my seven year-old daughter, Isa scrambled around with other children at the park, her long, dark hair swinging across her back as she dodged the hot sun under a canopy of shady oak trees. She’s come a long way since that time five years ago when her little bald head was as smooth and hairless as a ripe honeydew melon.

Last Sunday, our family attended the annual reunion party for the Santa Barbara Cottage Hospital Pediatric Oncology Department where Isa was treated for her leukemia when she was two years old. We always look forward to going to this event because we get to see the many friends that we’ve made at the hospital, but mostly we go because sometimes we just need to be reminded of how lucky we are.

Isa, about a month before her cancer diagnosis.

Isa has now been cancer free for over five years, and so our day to day lives no longer revolve around chemo treatments, bone marrow aspirations, spinal taps or blood and platelet transfusions. No longer do I wake up in a panic in the middle of the night because my daughter is running a fever and I have to rush her to the hospital. It’s been a very long time since I had to cradle her head as she vomited from the chemo or deal with her black moods brought on by the steroids.

As time goes on it gets easier to forget that scary time in our lives. Things have returned to normal—or to whatever “normal” is. My husband and I still experience the usual day to day worry that many other married couples do—such as how to pay the bills, how to pay the bills, and how to pay the bills, but this particular worry is nothing compared with the added anxiety that our child could possibly die.  Luckily, we’re now home free and we get to cross cancer off our list.

Isa, bloated and bald after six months of chemo.

This is why I’m writing about pediatric cancer again. At the hospital reunion party I saw children of all colors and sizes—more than a few of them with bald heads, and I was reminded that there are still too many families who have yet to cross cancer off their list. I was reminded of three year-old Lexi Krasnoff, who at last year’s party, took off all of her clothes and ran naked through the park, the dome of her fuzzy head gleaming in the sun. Lexi wasn’t with us at the party this time because she died of her leukemia last February. Her parents have crossed cancer off their list, but not in the way they had prayed.

Cancer is always a very nasty thing, especially when it comes to children, and it’s always a struggle no matter what the circumstances are. Yet there is one beneficial side effect from cancer, whether your child lives or dies from this disease: It is LOVE.

During those first days when Isa was in the hospital, when I was as terrified and vulnerable as a child lost in the wilderness, I experienced a huge shift in my consciousness. I became aware that I was not all alone in this universe and that there were multitudes of people around me—hospital staff, family, friends, and even complete strangers whose love for Isa and our family enveloped us in huge bear hug and lifted us out of that all consuming darkness and fear. I was open to something I would have never known before Isa’s cancer diagnosis: the genuine connection of pure love that exists between each and every one of us.

There’s just something about a child with cancer that makes you forget that negative way of thinking—you know what I’m talking about—those feelings of judgment, resentment, envy and hate with which we’ve become so damn comfortable.

When you learn of an innocent child who’s been diagnosed with cancer, your first reaction is “That poor family! What can I do to help?”  You stop thinking of yourself for a moment and your heart opens up a little more. Your perspective on life changes and you realize how lucky you are that your child is not experiencing something so dire. Perhaps you even begin to appreciate those around you more and your capacity to give and receive love becomes more significant. Your connection with others begins to synchronize and you begin to understand that all of us are exactly the same on the inside.

Wouldn’t it be wonderful if we could experience this profound connection with others without a child having to suffer through the disease of cancer? Wouldn’t it be incredible if it didn’t take something as hideous as pediatric cancer to allow us to love and appreciate each other on a deeper level?  Wouldn’t it be perfect if no child ever had to suffer through surgery, chemotherapy or radiation again in order to teach us about this magnificent gift of love?

There’s no doubt about it—love grows and evolves when a child is diagnosed with cancer. I’ve seen it happen over and over again. And because September is Childhood Cancer Awareness Month, it’s a time when we all need to be reminded to nurture this love and spread it around. There is ample opportunity to help: volunteer for an organization that helps children with cancer, make a donation to cancer research, or reach out to a family whose child has been diagnosed with cancer.

Let’s keep this awareness alive and do all we can to find a cure so that someday, an innocent child won’t have to suffer through the pain of cancer treatment just so you and I can learn to love each other the way we’re meant to.

http://teddybearcancerfoundation.org/

http://www.sbch.org/OurHospitals/CottageChildrensHospital/tabid/150/Default.aspx

http://www.curesearch.org/

http://www.lls.org/

A Different Outcome

21 Feb

It’s difficult to believe that an entire year has passed since Lexi Krasnoff died from her leukemia. I’m re-posting this in honor of her precious memory. She will never be forgotten.

Lexi Krasnoff died on a Friday afternoon at four thirty. It had been a glorious Santa Barbara day—the kind of day when we forget that we’re still in the middle of February. A soft breeze drifted through the newly budding trees and pointed its finger in the direction of spring. It was the kind of day when the air was scented with a hit of early blooming flowers, offering a sense of anticipation and hope for what was ahead. It was not a day when a beautiful and precious three year-old girl should have died.

But there’s never a day when it’s tolerable for a child to die.

When I told my seven year-old daughter that her little friend, Lexi had died, she didn’t believe me at first.

“Isa,” I told her, pulling her onto my lap. “I’m so very sorry to have to tell you that Lexi died this afternoon.”

She stared at me with a half smile on her face. “No she didn’t, Mommy—you’re just kidding around with me!”

My eyes filled as I choked out the words. “No, Honey—I’m not joking. Lexi died a few hours ago. I’m so sorry, sweetie.” I cradled my daughter’s warm body to mine and cried into her sweet-smelling neck.

She pulled away from me. She still didn’t believe me. “Mommy, Lexi didn’t die! That’s not funny!”

I took her by her shoulders and looked into her face. My voice cracked.

“Isa—I’m sorry, but it’s really true. Lexi was very sick and her little body couldn’t fight the leukemia anymore and she died a little while ago at the hospital.”

She saw the tears on my cheeks and finally realized I was telling her the truth. And then she began to sob. I’d never seen Isa this upset before. She cried uncontrollably for almost an hour and there was nothing I could to do to console my daughter. Her friend was gone.

Lexi and Isa three weeks before she died.

What I admire most about Lexi’s mother, Kat is that she never gave up hope that Lexi would make it. She spent day after day in a hospital room waiting for her daughter to get well again. When Lexi was moved to the pediatric intensive care unit, she became a mother lion who would not stand for tears or sad faces from visitors because that meant they did not have hope.  As she watched and waited while the leukemia ravaged her daughter’s little body, I know she held onto that hope until the very last moment.

Since I learned of Lexi’s death, a sensation of pressure has been building in my chest like a vice has been carefully positioned on either side of my lungs. It squeezes a little tighter every day, making it more difficult to take a deep breath. I thought my bouts of tears would help loosen the tightness in my chest, but it’s not going away. It sits there—rock hard and unbreakable, making my heart feel heavy and my body fatigued.

At first I thought it was only the grief and sadness over losing Lexi that was filling up my chest and clouding my thoughts with despair.  After all, Lexi was an extraordinary little girl who charmed me and everyone else around her with her sweet smile and sassy personality. She was special, and it wasn’t just because she had cancer—from what I’ve heard from her family and friends, she was born that way. I feel a deep sadness about her death that weighs heavily on me, but it’s more than that—the pain I feel is mixed with an emotion which burdens me in a more profound sense: I feel guilty.

Isa at Lexi’s memorial.

I feel guilty because by some luck of the draw, my daughter lived, and Kat’s daughter did not. Although I’m filled with an unending gratitude that Isa is still here with us, I’ve become fully aware of the unfairness of Lexi’s death. I also know that what I’m experiencing is “survivor’s guilt” and that it’s a common emotion for parents of children who survive their cancer.

Isa’s oncologist warned me about this condition four years ago after a little boy named Jeffrey died of the exact type of leukemia that killed Lexi. We had befriended Jeffrey and his family in the hospital when Isa was first diagnosed, and our families developed a bond that only families with children suffering cancer can form. When Jeffrey relapsed and died, it was a crushing blow to our entire family. The intense fear that I felt about Jeffrey’s death caused my panic level to rise to a fever pitch because it made the possibility of Isa’s death that much more real. If it happened to Jeffrey, it could happen to Isa.

I remember feeling guilty that Isa was doing relatively well during her illness, but because I was in the throes of her treatment and so terrified of losing her, I set aside those feelings of guilt and placed my complete focus on taking care of my daughter. For my own psychological survival, I had to shut myself down. At that time, I didn’t think about how unfair Jeffrey’s death was. I convinced myself that there was some predetermined reason for our friends to lose their only son to this horrible disease, and that someday we would all realize the good that came from it. I shoved all of those intense feelings of guilt and loss into a hidden chamber in my heart and left them there, unresolved and festering like bacteria growing in a Petri dish.

So here I am again, in the same place I was after Jeffrey’s death, but the difference is that now Isa is healthy, and I’m strong enough to face the pain and the guilt about Lexi’s death. This is why I’m walking around in a daze and can’t snap out of it. This is why my heart hurts so much. I finally understand the unfairness of it all and I feel the pain to the core of my being. I wish there was something—anything—that I could do to take Kat’s suffering away, but I know that no matter what I say or do, it will never be enough.

Caleb, Jonathan, Kat and Lexi Krasnoff

What I hold close in my heart is the knowledge that Lexi brought so much love into this world during her short life. I saw how much the doctors and nurses at the hospital loved having her as their patient. I witnessed it at her memorial service when her father spoke about how Lexi was his best friend. I listened when her grandfather talked about how Lexi taught him what pure love was. I cried when one of Lexi’s neighborhood friends got up in front of all those people in the church and sang a song dedicated to her. Finally, I watched as hundreds of people let go of pink balloons into the clouds above, on each one a personal message written to this sweet little girl who died too soon. Lexi, just by being who she was, had managed to change them forever.

Messages sent to Lexi

But I also realize that it’s not fair that the world doesn’t get to watch this adorable little girl with the big brown eyes and pouty lips grow up into a sparkling young woman full of life. It’s not fair that my daughter lost her little friend to cancer. It’s not fair that Lexi’s little brother Caleb will never know his big sister.  It’s not fair that I get to watch Isa grow and learn and play and dance and laugh and go to college and get married and have children and Lexi’s parents do not get to watch their daughter do these same things. I’m sad and sick and angry about this. Why do I get it all and they don’t?

Pam, the nurse (and close friend) who has helped take care of Isa these past four years helped put things into perspective for me. She told me that it’s normal to feel guilty when your child survives cancer when other children die. She said that my experience dealing with Isa’s cancer is every bit as painful and life-changing as that of a parent whose child has died from this insidious disease.

“In your mind’s eye,” Pam told me, “you probably watched Isa die and may have may have even planned her funeral—every parent who has a child with a life-threatening illness goes to that dark place, so your pain is just as weighty as anyone else’s. From what you’ve been through, you know intimately how that pain feels. It’s just that you had a different outcome.”

Yes, my outcome was different—I was one of the lucky ones.  And I’m sure the guilt will stay with me, but it’s imperative that I feel it and deal with it and not run away from it. It’s important for me to use my experiences to help others should they need it. I know that it’s my responsibility to offer my love and support to those families who will benefit from hearing my story, because I was one of the ones who had a different outcome.

No matter what happens, every parent who has a child with cancer needs to know that Isa made it, because then they can have the hope that their own child will survive. Hope is really the essence of life, and the one thing we all can hang onto. Hope is what kept Kat going until Lexi took her last breath.

And yes, it’s true that sometimes children die from their cancer.

But sometimes, they don’t.

Waiting

6 Jan

Two beautiful ladies: Kat and Lexi

My friend Kat is waiting. She waits while she puts the dirty laundry into the washing machine, she waits while she scrubs the kitchen sink, and she waits as she bends over to pick up toys strewn about the living room floor. Every time she takes a breath she is waiting.

When your child has cancer, you wait.

It’s exhausting—all of this waiting.  It’s especially wearisome when Kat has to wait in her daughter’s hospital room while Lexi gets her most recent dose of chemotherapy. I know firsthand how difficult it is to spend all day and night in a bleak hospital room, where time drags on and on and terror makes itself comfortable in your stomach like an unwanted house guest.

When the current round of chemo is finished, Kat takes Lexi home, where she waits to see if her daughter’s suppressed immune system will be strong enough to fight off any infection. She waits for the fever to come, and it usually does. She travels back and forth to the hospital (sometimes every day) to draw blood and check Lexi’s hemoglobin and platelet counts.

Lexi in the hospital.

At the clinic, Kat waits patiently while the nurses fuss over her daughter—they can’t help it because Lexi is special. She’s smart and funny and precocious, and she’s one of their favorite patients. Kat laughs and jokes along with the staff, even teasing the doctors at times like they’re family—and indeed, because of this nasty thing called cancer, they have become just like her family.

She waits for Lexi’s white cells to go back up. She waits for her daughter to feel better. To Kat, seeing Lexi feeling good is as calming as putting on a pair of warm pajamas fresh from the dryer—soft and safe and comforting, even though she knows the warmth will only last for a short while.

Then Kat waits for the phone call from the clinic to see if the chemo has done what it’s supposed to do. This is the most excruciating waiting of all. It’s especially difficult when the voice on the other end tells her that Lexi is not in remission and that she has to go back into the hospital for more chemo—this time for a stronger form with even more side effects.

Kat has been waiting a very long time for her three year-old daughter to go into remission.  And she can do nothing but pray and hope and wait, because Lexi must have a bone marrow transplant to live.

Lexi, before her diagnosis of leukemia.

A mother should never have to think that her child could die. It’s an agony beyond comprehension. The love that we mothers hold for our children is so infinite that the mere idea of the possibility of their death drags us into that suffocating room of unthinkable anguish.

Before my daughter Isabella’s diagnosis of leukemia over four years ago—before I even knew what real fear was about, I foolishly tormented myself by visiting that room in my mind every so often.

For years I had a bad habit of waking up in the middle of the night and letting my imagination run away with me like a child on a bicycle speeding down a steep hill. I’d squeeze the hand brakes a little so that the fleeting images in my head would start out slowly and relatively innocuous. Maybe I’d picture one of my kids falling and chipping a tooth, or perhaps slamming their fingers in the car door.

It never stopped there, though. As I pedaled down that dangerous hill of make-believe, the pictures in my mind always became more graphic. Within a few minutes, I’d have come up with some insidious scenario involving my children and electrical sockets, watching them running out in front of a speeding car or worst of all—finding their lifeless bodies at the bottom of our swimming pool.

It was a very sick habit—this making up of horror stories. I don’t even know why I allowed myself to do this, but the more I practiced the better at it I became. I was like a veteran film director shooting a climactic scene; it was absurd the variety of dreadful endings I could come up with! And my mental movies never had a happy ending.

At times, these visions snatched the breath right out of my lungs as I laid there in bed, the stillness of the night amplifying my terror. But even then I knew these thoughts were just figments of my neurosis, that it was just a stupid game I played in my head. I could shake it off, pull the covers back up to my chin and go back to sleep. I could forget all about it.

And then I couldn’t forget about it, because it became real. And never once did I imagine my child getting cancer as the ending to one of my movies.

So I went through my journey with Isa’s cancer, because I had no other choice. As much as I wanted to, I couldn’t close my eyes and go back to sleep—I had to face the reality that my child could die.

I sat and waited in the very same hospital rooms as Kat. I’ve made friends with the very same nurses and I’ve even teased the same doctors. I’ve waited in agony for those anxiety-producing phone calls. I’ve cried, I’ve worried, and like Kat, I’ve had some very bad days.

Isa in the hospital on her third birthday, bald from chemo and bloated from the steroids.

Fortunately, I’ve had more good days than bad. I’ve made it through to the other side. Isa’s leukemia was the kind that has the highest cure rate, and she had all the criteria for a good outcome: her young age, her genetic and chromosomal make-up and most importantly, she responded rapidly to the chemotherapy.

I’ll never forget waiting for the doctor to call and tell us whether or not Isa’s cancer had gone into remission. On that warm summer afternoon when I answered the call from her pediatric oncologist, my stomach knotted as I braced myself for the worst. When I heard those words on the other end of the phone “absolutely no more leukemia cells in her bone marrow,”I sobbed tears of joy and relief as I fell into my husband’s arms—so thankful that such a burden had been lifted off our shoulders.

Mommy and Isa at the beach, December 2011

Since I began this  journey with Isa’s cancer, I’ve stopped my late night visits to that room of imaginary horror—there’s no need to go there. There never was. I’ve grown and changed and learned to live more in the moment. I’ve felt the love and concern from friends, family and even strangers pour into me like warm milk and honey. I’ve been overwhelmed by the sheer goodness of people and I’m forever grateful that my real-life movie turned out to have a happy ending after all.

Isa today, hair all grown back.

Though I don’t presume to speak for Kat, I know that she has had many of the same kinds of experiences and is thankful for those who have helped her along the way.

Lexi has a long road ahead of her. Her leukemia has been difficult to treat. When she finally reaches remission (and I believe with my heart and soul that she will—I have to believe this), Kat will have to begin the process of waiting again as she takes her baby girl through the bone marrow transplant. She will have lots of help along the way because although cancer is a terrible disease, many incredible things begin to happen when a child is diagnosed.

And Kat will have her happy ending, too—I just know it.

A mother will wait for as long as it takes.

Lexi and Kat at the Teddy Bear Cancer Foundation Christmas Party

The Feast

26 Oct

The meal is almost ready. The white tablecloth has been laid on the table, its hand-embroidered flowers against the white background like a snowy meadow of red poppies. Colorfully painted vases that have been placed on the table spill over with bright orange and yellow marigolds, accompanied by tall stalks of scarlet gladiolas which hover at both ends like skinny old women reaching out their long arms in welcome. The piquant aroma of the marigolds combined with the lingering scent of burning incense creates an atmosphere of magic and anticipation in the dark room. Candlelight dances across the faces of the guests, who sit still and quiet in the darkness, their expressions never changing.

All over the table, the abundance of food is evident: bread that has been baked in the shape of corpses lies in plentiful heaps next to the steaming tamales in their tightly-wrapped corn husks. Candy and ripe fruit mingle with the tiny toys and trinkets that have been left on the table to please the children: a toy truck for a young boy, a favorite black-haired doll for a girl of six.

This room should be filled with excited chatter in anticipation of this spectacular meal, yet not one guest utters a word; each one of them waits patiently in silence, staring off into the candlelight. There is a feeling of time slowing down—a sense that no one is going anywhere— that there is no need to hurry.

On this night, despite the festive preparations, there will be no eating and drinking at this table, because in reality, all of our guests are only familiar faces captured in photographs; some smiling, some somber, but all of them are gone forever.

All of our guests are dead.

After all, tonight’s celebration is not really meant for them, but for us—for the family and friends who knew them and loved them and planned this elaborate celebration in order to remember them.

Tonight is the offering. It is “Dia de los Muertos”.

The Mireles Family Altar

As a child, the idea of death confused me, because I really knew nothing about the process of death or the act of mourning. I understood that people died, but my parents, probably in their attempt to protect me, didn’t talk about it, or softened its meaning by referring to it as passing away or moving on. In my child’s mind, I saw these dead relatives passing away as if they were swooping off into outer space like in a cartoon. No one talked to me about what happens when you die. I never once saw a dead body; I never attended a funeral or memorial service, and I never even cried over the loss of someone dear to me—even after my own grandparents died I truly felt no sense of real loss. Death was just some abstract concept that I was never able to understand.

When I was in college, my father, only a few years older than I am now, died suddenly from pneumonia. I wasn’t able to grieve thoroughly and deeply after his death, because real mourning had never been modeled for me. Our family handled his death without fanfare. We had a simple gathering of friends at our home, but there was no memorial service, no funeral, no music played, and no words spoken aloud of who my dad was and what he meant to all of us. Not being able to grieve his death openly with friends and family left an emotional vacancy in my heart and later manifested in a long period of depression and suffering for me. I had lost someone so close to me, yet there was no real goodbye.

Shortly after my father died, I met and later married my husband, Rene, who is an indigenous Zapotec Indian from Oaxaca, Mexico. Throughout his life, Rene had been taught to accept the experience of death as a normal occurrence—something that was a natural part of life. Nothing about death was ever covered up for him, and so he was able to teach me that death is not something to keep quiet about, but quite the contrary—it’s a chance to talk, cry, rage, and even laugh about —but mainly, he helped me understand that it’s perfectly natural to feel the emotions associated with losing someone close to you.

Rene comes from a culture where death is not feared, but is considered an important and revered part of life. When someone dies in Rene’s hometown, the prayer vigil lasts for nine days. The corpse, in traditional dress, is laid out at home on the dining room table for everyone to touch and kiss goodbye. This is followed by a funeral procession where mourners walk alongside the pallbearers who carry the casket on their shoulders to the church. The traditional brass band plays somber music as the people cry and wail. Everyone helps out to cook and feed the large crowds that gather, and prayers are said for the dead throughout the night. Tears are shed openly; stories are told about the deceased, and most importantly, emotions are displayed without shame or misgivings.

And it’s not just when someone dies that death is revered. It’s celebrated yearly on “Dia de los Muertos” (Day of the Dead) with much celebration beginning on November first (All Saints Day).

A cemetery in Mexico on Dia de los Muertos

All over Mexico and Latin America altars are constructed displaying photographs of the deceased, fresh flowers, food and gifts for “La Ofrenda” (the offering). Whimsical skeletons and skulls made of sugar are placed on the altar in order to make death seem humorous and less tragic. People actually go to the cemetery, their arms laden with marigolds and candles to spend the night and pray for their dead family members, encouraging the souls of the dead to visit. It’s a beautiful and moving tradition, but it’s one that I really hadn’t embraced until a great tragedy hit my own family.

The first time Rene suggested that we have an altar in our home was after my brother’s daughter, Gillian died after choking on a hotdog. Gillian was only six years old, and her unexpected death left me inconsolable. For the first time in my life, I allowed myself to really experience the grief and despair that comes from the death of a loved one.

Gillian's photo, with one of her dolls beneath her.

Gillian’s death was a sudden, heart-wrenching loss—one that I never imagined I’d be able to face, but I had to. At times, seeing my brother and his wife suffer was unbearable, but having Gillian’s photograph on our altar helped me work through some of the pain and grief that I needed to express. The process of celebrating her on the altar helped me understand that through her death, she gave me a precious gift—the realization that I could let go of my own inflexibility and self-righteous behavior toward my brother, and try to repair our strained relationship. Ultimately, Gillian’s offering was successful—my brother and I are now closer than we’ve ever been.

Death has touched our family many more times since my daughter Isa was diagnosed with leukemia four years ago. The sad truth is that children with cancer sometimes die. When Isa was first admitted into the hospital, we became friends with Erika and Jeff Zamora, whose son Jeffrey was in the room down the hall from us, battling another form of leukemia. Isa and Jeffrey were around the same age and they became playmates. I would often run into Erika at the clinic when both children were receiving treatment at the same time and Jeffrey and Isa would be so happy to see each other.

A clear memory I carry in my mind is a time when our kids spent the afternoon in the same hospital room receiving blood and platelet transfusions. You’d think that with two kids so sick they needed transfusions, this would be a somber affair, but Jeff and Erika brought Mexican food along to share and our room became “party central.” Jeffrey and Isa happily played and watched cartoons while Jeff’s wild sense of humor kept us all in hysterics. Our boisterous laughter soon brought all of the pediatric nurses to our room to join in the fun. It was a joyful afternoon.

Jeffrey died a few months later. It never occurred to me that he wouldn’t make it—so many people were praying for his recovery—and I truly believed in my heart that he would live.

After his leukemia relapsed, he had been scheduled to have a bone marrow transplant as soon as the doctors could get him into remission again, but his little heart couldn’t handle the stronger chemo and he went into cardiac arrest. Imprinted like a video clip in my mind, I will never forget walking into the ICU, overflowing with family and friends of the Zamoras, and seeing Erika, unable to conceal the devastation and sorrow in her face as she held Jeffrey’s tiny body in her arms.

A smiling Jeffrey Zamora on our altar

Jeffrey’s sweet smile now looks out at us from our altar, a red toy fire engine placed under his photograph. He joins the other guests: Rene’s parents, my grandparents, my two uncles, and of course, Gillian. My father’s photograph is in the center.

For years now, I’ve carried the burden of resentment in my heart toward my dad and how his struggle with alcoholism affected me as a child. The altar is a chance for me to let those feelings go; a chance to remember and embrace all that was wonderful about my dad—that the reason we live in this beautiful home is largely due to his life’s work.

My daughter, Nora making paper flowers for the altar

Celebrating Dia de los Muertos offers me chance to be appreciative for everything I have and to understand that life sometimes offers bad experiences, and it’s all right to be sad and it’s all right to cry. It’s also all right to remember and laugh about the good times, too. We just have to accept that death is unavoidable and that’s why it’s crucial to take the time to live every moment to the fullest.

Quietly staring at the altar, as I look at the faces of those who are no longer here with us, and although I feel a bit sad, I also feel peaceful. But what I feel most is supremely thankful that I am one of the lucky ones—that Isa is alive and well, and that her photograph is not up there on the altar next to Jeffrey and Gillian.

Through some miracle of the universe, or most likely the loving grace of God, Isa is right here with me and Rene and my other  beautiful children as we gather around the altar to remember our family and friends and to cry and to laugh. Hopefully, our children will continue this tradition with their own families someday.

For now, this is the moment: the table is laid; the celebration begins. We tell our stories and Isa smiles up at Jeffrey and Gillian as the candlelight dances in her eyes.