Search results for 'lexi'

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

Just a Piano Teacher

24 Jul

photo (12)Over the past twenty-five years, when someone asked me what I did for living, I would say, I’m just a piano teacher. It’s been a fact of my life that every weekday afternoon and most Saturday mornings, young children between the ages of five and eighteen (and the occasional adult) show up at my house with a stack of music (sometimes practiced, sometimes not) and proceed to sit down at my Steinway concert grand piano and play for thirty to sixty minutes at a time. They listen (or sometimes don’t) while I correct them, praise them, and encourage them to become better pianists and musicians.

I’ve always thought of myself as just a piano teacher because I seem to say the same things at every single lesson: Sit up tall with your feet flat on the floor; curve your fingers, relax your shoulders, play softer; play louder; play faster; play slower; count out loud; pay attention to the fingering; make your staccatos crisper, your legato smoother; LISTEN to your tone quality; pay attention to the dynamic markings; shape the phrase like a vocalist would sing a melody; and for God sake, please stop banging on the keys—you’re hurting my ears! Most importantly: Practice, practice, practice, and then, PRACTICE MORE!

I’ve always thought of myself as just a piano teacher when I tell my students how important it is to be consistent—that good practice habits will spill over into their everyday lives; that studies show that learning a musical instrument will make them smarter; that doing weekly music theory homework will allow them to understand the complexity of music; that performing in recitals will teach them how to be confident in front of an audience, and that above all—to be able to sit down at a piano, pull out some music and play for the sheer pleasure of it is one of the greatest gifts they can carry through their lives.

I can say with all honesty that my career as just a piano teacher has been rewarding as well as fulfilling, but lately I’ve been thinking that perhaps my job is so much more than that.

The truth is, I’m more than just a piano teacher when my interactions with my students don’t involve music at all—like when their eyes light up when I tell them how much I like their new red tennis shoes or how cute their new haircut is, or that I notice they’re missing a tooth and I’m as excited about it as they are.

I’m more than just a piano teacher when I listen to my students talk about how much they loved reading the Harry Potter or Hunger Games books (as I did) or how cool the new Disney/PIXAR movie was, or how the most recent video game they just got for their birthday is totally sick. I’m more than just a piano teacher when I allow them to chatter on about it for a moment before I gently redirect them back to the lesson.

I’m more than just a piano teacher when a student walks into the lesson looking upset and tells me that so-and-so was mean to them at school and now they feel like they don’t have any friends. I’m more than just a piano teacher when I tell them that I know exactly how they feel—and that the same thing happened to me in junior high, but it got better when I started high school. I’m more than just a piano teacher when I hand them a tissue to wipe their eyes, give them a hug and tell them it’s going to be all right, I promise.

I’m more than just a piano teacher when they reveal to me that they have a crush on someone; or about who asked them to the dance; or how they got (or didn’t get) that big part in the school play; or how much homework there is in their AP World History class; or how they’re terrified of blowing the SAT. I’m more than just a piano teacher when they run into my studio giddy with joy because they just passed their driver’s test and actually drove to their piano lesson by themselves for the first time.

I’m more than just a piano teacher when they let me in on where they’ve applied to college and what do I think about that particular university? I’m more than just a piano teacher when they come to their final lesson to say goodbye and I always cry (and sometimes they do, too) because our time together has come to an end.

Yes, I’ve loved being just a piano teacher, but it’s the more than parts that have made my job such a joy.

My job has allowed me the privilege of spending consecutive years with a student, getting to know who they are while never giving up hope that they will mature into a gifted musician. Sometimes they do, and sometimes they don’t—it doesn’t really matter.  The important part is that I’m there when they perform in recitals and festivals and I get to watch their parents beam with pride after they’ve had a successful performance and know that I had something to do with that. I get to tell the story about how I never give up on any student—EVER—and how for years I would dread the lesson of one particular boy because he just wouldn’t practice; how one day a light went on in his head and before I knew it, that boy was playing Bach Preludes and Schubert Impromptus with the musical maturity of a concert pianist.

Little brother Cyder reading during Merckx Dascomb's piano lesson.  Photo credit: Tatiana Johnson

Little brother Cyder reading during Merckx Dascomb’s piano lesson.
Photo credit: Tatiana Johnson

By being just a piano teacher, I have been able to earn an income by sharing my love of music with children; more importantly, through the process of teaching them over the years, I’ve had the privilege of becoming their friend.  By being just a piano teacher I have been given the gift of loving them as if they were one of my own children.

So I guess the next time someone asks me what I do for a living, I’ll say the same thing I always say: I’m just a piano teacher, but this time, I’ll understand what that really means.

fingers on keyboard

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.

An Ordinary Birthday Party

21 Sep

Lexi, admiring her Shrek Birthday cake. Isa is on the far right.

Last Sunday afternoon, I went to an ordinary birthday party. There were brightly colored yellow and orange balloons, a red and blue bouncy house and a whimsical Shrek cake in the most vibrant shade of green imaginable. The sun danced like it was still summer, accompanied by the music of children’s laughter, as the smoky scent of a barbecue floated through the September air.

The only thing not ordinary about this party was that the birthday girl had absolutely no hair and will soon be headed to Los Angeles to have a bone marrow transplant.

The birthday girl has cancer.

My daughter, Isa and I went to this ordinary birthday party for three year-old Lexi, who is battling Acute Myeloid Leukemia (AML). We met Lexi and her parents, Kat and Jonathan, through the Teddy Bear Cancer Foundation, which is a local Santa Barbara organization that helps families with their emotional and financial struggles while dealing with a child with cancer. Isa and Lexi hit it off right away, because they’re basically two peas in a pod: their mission in life is to be cute, say hysterically funny things, and make people laugh as much as possible.

A year ago, after being diagnosed, Lexi went through intense chemotherapy, and after six months, I was delighted to hear that she was in remission. Unfortunately, AML is somewhat more difficult to treat than ALL (which is what Isa had), and Lexi relapsed. She is now facing a bone marrow transplant, and will travel to the City of Hope Hospital for her transplant in October. The wonderful news is that a perfect bone marrow donor has been found for her. The bad news is the forthcoming isolation of a months-long battle that she and her parents are facing.

The day of Lexi’s party couldn’t have been more glorious: the lingering fog was finally chased away by the sun, just in time to make the surrounding green grass come to life with yellow dandelions popping out like polka dots.

Lexi was dressed up like a little glamor princess with black leggings and a lacy leopard-print frou-frou skirt. Her perfectly-shaped bald head shone in the sun like that of a miniature, wizened Buddha. She ran around entertaining people with her funny antics and adorable facial expressions. She was an ordinary happy child.

I brought my plate, loaded with delicious barbecued chicken and tri-tip, and sat down at a picnic table, surrounded by nurses, doctors, social workers,  clinic office managers—all folks whom I’ve met and become close with through Isa’s long journey with leukemia. We dug into our food, joking and teasing each other, like old friends do.

As I looked at all of their laughing faces, I felt of wave of pure gratitude pour through me. I thought, “How lucky am I to be in the midst of such incredible people?”

By looking at them, you wouldn’t think they are so special. On the outside, they’re the same as you and I: thick, thin, tall, short, old and young. They’re not perfect; sometimes they’re grouchy, admittedly controlling, and even sarcastic at times.

But on the inside, these people are extraordinary. They share something rare: a deep capacity to love and the ability to show that unconditional love to all patients, no matter what the child’s circumstances or background are.  These remarkable people take care of young cancer patients who are ailing and miserable, and always do it with a smile, a silly joke, or a gentle touch.

They deal with rude and irate parents who, so terrified of losing their child, lash out in anger.  They smile, bite their tongues and turn the other cheek. They put up with young patients who act out of control because they are in so much pain; kids who cry and scream and hit because they don’t want to be poked with another needle, or swallow any more nasty medicine. Sick children vomit, bleed and poop on them, and they clean it up without uttering a single complaint. They soothe all of us with hugs and kind words and tell us it’s going to be all right. And we believe them.

Sometimes their young patients die on them.  As painful as it must be, they show up at every funeral and cry because they know they’ve lost another angel.

Yet, God bless them, after all this, they still keep showing up for work every day.

And there they all were, enjoying an ordinary birthday party, after traveling miles away from their homes, on a Sunday—no less, to be with Lexi on her big day. They came to support Kat and Jonathan. They came to her party because they love Lexi—just like they love Isa.

Just like they love Jeffrey and Rosie and T.T. and every single one of their patients.

Attending a birthday party for one of your patients doesn’t seem like such a big deal, but really, it’s much more than that. It’s a sign to the patient’s family that they have a support system in place; that there is a group of people who love and care for them, and will do anything in their power to heal their child.

Isa and her nurses

Nurses Pam, Peralee and Nanci snuggling with Isa.

Recently a friend asked me, “Don’t you want to forget that Isa’s illness ever happened, and just move on? Why do you keep surrounding yourself with kids who have cancer?”

The answer I gave her is yes, I am moving on, but not in the way she thinks. I’m moving on because after this giant struggle, I’m finally growing into the person I was meant to be.  I’m moving on, but I’m also staying put. I’m not going to distance myself from the center of this terrible, horrible, life-altering, transcendental thing that is pediatric cancer, because I’m needed here. There is still so much more work to be done.

As human beings, we are all connected in a way that few of us completely understand, but childhood cancer somehow breaks down that wall of self-protection we build up throughout our lives. The vulnerability created by a child’s cancer diagnosis allows one to find that deep, human connection that we all strive to attain. It allows us to start knocking down that wall that’s been fortified by that viscous mortar of fear.

Nurse Peralee, Isa and Mommie.

Nurse Paralee, Isa and Mommy right before surgery.

I carry a powerful memory around in my heart from the  start of our cancer journey, when Isa had just been admitted to the hospital. I was at the lowest point I’d ever been in my life; when I was so afraid I could barely speak. Isa’s nurse that day saw the state I was in and came over and enveloped me in her arms. She held me for a long time.

“You know, Jessica,” she whispered in my ear, “I’ve seen many cases like Isa’s, and I just want you to know that she’s going to be just fine—I promise you.”

As a professional, a nurse is not supposed to make those kinds of promises, but I can tell you that those simple words were like a soothing balm to me. I realized she couldn’t really see the future and know for sure that Isa would be all right, but what she did know is that I needed to hear those words. That was a turning point for me. With just a few sentences, she was able to begin chipping away at my wall.

Because of these heroic people who all worked together to save my daughter’s life, I have the luxury to appreciate every moment spent with Isa, or the rest of my family and friends, for that matter, and cherish that time with all of my being. For this, I’m forever grateful.

These very same people are there for Lexi, too—giving her parents a sense of support and peace, if only for a short time on the afternoon of their daughter’s third birthday party.

It was just an ordinary birthday party, but what I saw was unrestrained grace. The kind of grace when nothing matters except to live in the moment, where love and joy are tossed around like floating dandelion blossoms, their plentiful seeds fanning out in the breeze, the potential for new possibilities not far away.

It’s fitting that today, Wednesday, September 21, 2011 is World Gratitude Day. Take a moment and tell someone how much you appreciate what they’ve done for you.