Out of the Darkness

isa and me in hospitalThis morning, I was interviewed on K-Lite Radio for Santa Barbara’s Cottage Children’s Hospital. To most people, I’m sure it was no big deal, just a mother talking about her young daughter’s cancer experience to encourage listeners to donate to the local hospital where she was treated and cured.

And it really wasn’t a big deal, except that it was. Because, almost six years later, after my life has spun itself into a comfortable pattern of normalcy, I’m compelled to remember those dark days by once again sharing my story with others.

Over the past few years I’ve become quite adept at weaving those painful memories into the back of my mind like a skilled seamstress who has managed to hide that dark strand of yarn underneath the clean white stitches. But by reliving those frightening first days in the hospital, I’m obliged to unravel the memories and bring them back to the surface again.

I’m wise enough now to realize those memories are a gift; the surgeries and the blood transfusions; the unimaginable pain of witnessing a two year old suffer through chemotherapy treatments; watching Isa lose her hair until there was nothing left but a smooth dome of skin; seeing her belly bloat from the steroids; waking up in the middle of the night to touch her puffy cheeks to check for a fever; the overwhelming feeling of fear in my stomach that never went away; and all the while wondering if my baby was going to die.

Because if I don’t remember, I will return to the way I was before Isa got sick, when life was not as miraculous as it is today. These memories remind that I have to let go of what is not important.  I have to be thankful that my little girl is healthy and beautiful and that she is still here with me. I have to remember that what I have right now in this very moment is enough, and that my gratitude has the power to disentangle those little worries that I so expertly knit together into a tangled ball of dissatisfaction.

I have to remember the joy of coming out of the darkness and into the light.

Happy and healthy at eight years old.

Happy and healthy at eight years old.

Saturday Afternoon in the Garden

I spent the afternoon in the garden and although my muscles are sore, I feel such a sense of accomplishment! Thought I’d share some of the results with you!

Salpiglossis (Velvet Flower) is my favorite, but is very sensitive and will often die if you look at it wrong!

Salpiglossis (Velvet Flower) is my favorite, but is very sensitive and will often die if you look at it wrong!

apr 27 No. 9apr 27 No. 10apr 27 No. 6apr 27 No. 16apr 27 No. 17apr 27 No. 3Apr 27 No. 1apr. 27 No. 11apr 27 No. 5apr 27 No. 2apr. 27 No. 8apr 27 No. 12apr 27 No. 18

My garden imp, Isa

My garden imp, Isa

Coffee, Anyone?

starbucks

It’s Coffee Week. Now, up until about six months ago, I could’ve cared less whether it was Coffee Week or not (now, Chocolate Week—that’s a week I could care deeply about.)

When it came to coffee, I didn’t get the whole “need that morning cup” routine that my husband performed on a daily basis. I rarely drank the bitter stuff. Maybe I’d swig half a cup down (as long as it had lots of cream and sugar) along with a huge slice (or two) of lemon Poppy seed cake with cream-cheese frosting.  (FYI, coffee actually works quite well as a thinning agent when trying to shovel huge carb-laden bites of greasy fat molecules into one’s mouth as quickly as possible.)

Then last July I got sick of my body being fat and I stopped eating so much crap. I went on a high protein diet (whoops, I mean I went on a high protein life-style change) and started exercising. To date, I have lost almost forty pounds. This is good news for me, as I’ve probably extended my life by at least five years. This is even better news for Starbucks because now they are getting a daily $4.05 from me by selling me a Grande Decaf Skinny Mocha every afternoon at around one o’clock so that I don’t go crazy and go back to eating lemon poppy seed cake with cream-cheese frosting.

Yikes, I just did the math right now—all this coffee buying adds up to about $120 every single month. And since I’ve just extended my life by five years, that’s another $7200 Starbucks has coming!

Because when one is addicted to sugar as I am, one needs to replace this sugar with something that makes one’s body and mind think that one is consuming sugar when one really isn’t. In reality, I could fix myself a cup of decaf at home, add some fake sugar and some sugar free chocolate sauce and it would pretty much taste the same. Actually, I have done this, and it does taste the same. But it’s just not the same experience.

Because I guess what I really love is the ritual that a coffee house offers. I love that when I go into my local Starbucks, I feel as if I’m walking into a special club that offers warm lighting, hip music, and a lovely glass case of delectable treats that usually I only look at unless I’m PMS-ing, in which case I treat myself to a warm cinnamon bun or a chocolate croissant. I like that the person working behind the counter acts especially happy to see me (I realize this is not always true, and that it’s just good training on Starbuck’s part in order to make every customer feel special, but I like to pretend that the barista really does look forward to seeing my smiling face every afternoon.)

I love carrying my coffee in its pristine white paper cup, which for some unknown reason makes the coffee taste better to me (I know, a completely ridiculous notion as well as super bad for the environment) then getting in my sun-warmed car in the parking lot and slurping that sweet, sugar-free mocha liquid out of a little hole in the lid like I’m a baby sucking on a bottle.

Weird, I know (and a pretty gross visual), but we all have our issues to work on.

Jerry Seinfeld sums it up nicely on NPR: http://www.npr.org/blogs/thesalt/2013/04/26/179049781/so-jerry-seinfeld-called-us-to-talk-about-coffee

So call me sometime—we’ll go get coffee….

And Happy Coffee Week–or what’s left of it.

More April Flowers

Oh, glorious April! Such beauty in the world. Life is good.april 7april 8april 5april 6

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april 2

april 1

Spring Color

Spring is here again and I just had to share this delightful color with all of you!

As the garden grows and changes, I’ll post updates….

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april flowers 5

april flowers

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Love is Love

isa heart handsWhen I was in fifth grade, I had a crush on a boy named Jake Rubenstein. He had reddish blond hair, a dotting of freckles across the bridge of his nose and he ran faster than all of the other boys. Word on the blacktop was that he liked me back, and although I was extremely shy around boys and preferred to worship them from afar rather than talk to them, my heart was filled with innocent joy that a boy actually liked me!

While playing handball with my best friend Kelly, I told her that I thought Jake was cute, and she said, “You can’t like him—he’s Jewish!”

Jewish?” I asked, confused. “What’s Jewish?”

She informed me that it was his religion, and sometimes he wore a black beanie on his head when he went to church. She told me he couldn’t have a girlfriend who wasn’t also Jewish, so I should just forget about liking him.

“Unless you’re Jewish,” she told me. She stared at me across the handball court. “You’re not, are you?”

“Not what?” I asked.

“Jewish, dummy!” she said, bouncing the red rubber ball several times on the grimy asphalt.

“I don’t think so,” I answered. “I mean, our family doesn’t go to church or anything.”

“Well then,” she said, “you’re definitely not Jewish, because I think you would know if you were.

“Oh, okay,” I told her, a little sad, yet relieved at the same time that I had found out this important information before anything went too far. Whatever Jewish was, Jake was probably not the boy for me. That day, I decided to stop liking him.

It was the first time someone told me I shouldn’t like someone because they were different than I was.

Shortly after I graduated from college, I sat my mother down and told her that I wanted to marry Rene, an undocumented, uneducated Mexican Indian from Oaxaca. Rene and I met at a restaurant in Santa Monica where I was a waitress and he was a cook. While she liked Rene very much, my mother told me that I shouldn’t marry him because he and I were just too different.

“Jess, honey—you need to reconsider this whole marriage idea,” she said.  “The language barrier and cultural differences between you and Rene are just so vast—it’s going to make your marriage too difficult.”

Even though her feelings were expressed out of love and concern for me, thank God I was bullheaded enough not to listen to her.

When I called my grandmother back in Baltimore to tell her that Rene and I were getting married, her first reaction was, “But Jessie—your babies will be brown!” I wasn’t angry with her. In fact, I remember laughing about it with Rene. I understood that she was from a generation where it was unfathomable to think about marrying outside your own race. Her comment didn’t bother me one bit.  And yes, all four of my babies turned out to be the most beautiful brown color imaginable.

First society tells us not to love someone because they are a different than we are. Now, as is the case of same-sex marriage, they tell us not to love them because they are the same. The funny thing is, no matter what we look like on the outside, the love we feel on the inside is what truly matters, and it’s always the same. And what gives me, you, the church or the government the right to tell someone they can’t marry whom they love?

Change often takes generations to come about, but it always comes. Let’s not waste any more precious time. Love is love and it’s time to finally be fair about it.

Jesjsie and Rene in 1986

Jessie and Rene in 1986

Rene and Jessie today almost thirty years later.

Rene and Jessie today almost thirty years later.

Time to Write

lighthouseMy father died at age fifty-three, never realizing the dream of who he planned to be. He was a brilliant and articulate man; a gifted writer who had a degree in creative writing from Johns Hopkins University. But as many of us do, he smothered his initiative and creativity because he became too comfortable with that unyielding fear of not being good enough.

Maybe it was safer for him to hide behind his responsibilities and his resentments than to pursue his desire to become a writer. Perhaps the thick file of rejection letters hidden in the bedroom closet was just too much for him to bear. Sadly, he traded his beloved Smith-Corona typewriter for a bottle of gin and gave away his literary dream for a two pack-a-day nicotine habit and the television remote control. He died when he was only three years older than I am right now.

I’m grateful I didn’t inherit my father’s gene for alcoholism, but I did inherit the gene that’s even more intoxicating—the one that programmed both of us to believe: I’m just not good enough, so why bother trying?  As I’m sure my dad was, I have been embroiled in my own decades-long internal struggle about whether or not my abilities are good enough for me to realize the dream of who I want to be.

Lately, you may have noticed that I haven’t posted on my blog as regularly as I have in the past. Then again, you may not have noticed at all (See? There it is again–that annoying voice in my head telling me that nobody cares.)

The reason I haven’t posted much recently is because I’ve been working very diligently on writing a novel.  This is something I’ve fantasized about doing since forever, but that errant gene passed down from my dad discouraged me from really trying until recently. It doesn’t help that this whole crazy writing process, which includes opening oneself up to judgment and criticism is very scary at times. Wait—I take that back—it’s utterly terrifying! All the time!

But I’ve got a good story to tell, and I’ve been savvy enough to surround myself with a supportive writing group,  who along with my wonderful and encouraging family, read my words and tell me what’s not working—and more importantly—what is working. The very best part is that they also say they can’t wait to read more. So, whenever I can steal away a few quiet moments from my busy life, I write, and I’m the happiest I’ve ever been.

When I write, I often think of my dad and how painful it must have been for him to let his dream slowly die away. It may be that I’ve carried his destructive gene around with me since birth, but I now realize I’m not destined to follow his path. I’m the one in charge of making my dream happen, and as much as I want to sometimes, I can no longer blame my lack of confidence on my heredity.

I’m a writer and it’s time to write.

The following is a poem written by my dad and published in 1954

Beacon

The lighthouse keeper told me once about loneliness;

About how, when he first took the job,

He was afraid the light might go out,

And then wished it would.

He told me about a sailor that explained to him

What it means to a shipload of staring eyes

To see his spinning human message

Punching hope through a wall of distant despair.

The keeper said his life got a little dull at times,

And his wife complained once in a while

About having to live always on the edge

Of extreme ways of life;

But, he said, he was the denial of death.

I read in his diary, after he died,

That he hated the coming of spring, because all night

He heard his steel and concrete index tick off sparrows,

With little thumping sounds,

And that his hired man complained about the mess.

He willed his telescope to his wife, that was all he had,

And she told me that day that reason

He took the job was

He loved the freedom of the sea.

–Joseph Winters

My dad, Joseph Winters in his senior photo in the 1954 Johns Hopkins yearbook

My dad, Joseph Winters in his senior photo in the 1954 Johns Hopkins yearbook

            

Because of Daisy

daisy

A bald-headed, freckled-faced girl named Daisy died in her sleep after being sick for a very long time. She was at home, surrounded by her loving family, and she felt no pain. But she died, and I must say that I’m so very weary of hearing of yet another family’s tragedy and loss. I’m sick and tired of children dying from cancer.

Not again, is all I can think. How can it be that another sweet, funny and adorable child has died? Why was there no miracle this time?

I’ve always believed that a positive attitude is beneficial to one’s well-being and that our life experiences are never random or fortuitous. I truly believe that what we experience here on this earth is revealed in order to teach us something essential that we’re meant to learn. I’ve discovered these fundamental lessons are usually about love.

When my own daughter, Isa was diagnosed with leukemia, an incalculable transformation took place in my life.  I saw first-hand the astounding and unquestionable shifts in consciousness that came to pass in our family, friends, and even our community during our struggle with Isa’s cancer. Love was always the main component.

I see these miraculous changes have also occurred in Daisy’s family and in the huge number of people who knew and loved her—even strangers who’ve only heard of her fierce battle through her blog http://prayfordaisy.tumblr.com  or on Facebook.

I know Daisy’s family carries the strong faith that she’s all right now and I believe this, too. But from what I’ve seen over the past five years since I first became a part of the pediatric cancer world, the pain and hurt is only just beginning for them. Every time I think about her mama and daddy not being able to hold their precious Daisy in their arms, my heart breaks a little more.

When I think about what Daisy’s family has faced and what they’ll continue to face in the coming days, months and years, an infinitesimal part of their burden becomes mine and it hurts deeply.

Yet, I am grateful.

I’m grateful because each time a child dies from cancer, I’m reminded that by some small shred of grace that was bestowed upon me and my family, my daughter is still here, and I’m blessed with the chance to watch her grow up.  I will never have enough words to express my extreme gratitude for this miracle. I only wish that Daisy’s parents had been able to experience this miracle, too.

Yes, Daisy suffered and ultimately died, and we all know that this is the worst thing that could ever happen to a family. Yet, because of Daisy, we are changed forever. Because of Daisy, we can appreciate the blessings we have in our lives. Because of Daisy, our love and compassion for others keeps growing and expanding and filling up the universe.  I believe that this understanding of love is one of the greatest lessons we could ever learn. This kind of love is the real miracle.

Bless her little heart,  Daisy taught us well.

Gillian's Heart

Reblogged from Allegro non tanto:

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Right after my daughter Isa’s leukemia diagnosis, I felt the hospital walls closing in on me. Being isolated in a ten by ten hospital room with a two year-old with cancer is not an ideal situation to say the least. The dread and worry I felt about my daughter’s illness caused me to feel suffocated, like I was wearing a belt around my chest which would cinch tighter each time she cried out in pain, vomited, or spiked another high fever.

Read more… 3,188 more words

Today would have been Gillian's 17th birthday. I'm re-posting this to honor her memory.

Squeezing out the Excess

squeezing the ragThe kitchen is spotless except for a few toast crumbs scattered across the granite countertop, and in my haste to clean it up I grab the washcloth in the sink, not realizing it’s sopping wet. A stream of soapy water splashes across the counter, onto the front of my shirt, and all over the floor. Once again my mother has kindly cleaned up the breakfast dishes for me, but because of her arthritic hands, she’s no longer able to squeeze all of the excess water out of the washcloth.

A picture of a younger version of my mother flashes into my mind—she is standing at this very sink in a red apron, her tanned and freckled hands expertly twisting a wet rag into a taut rope as the soapy water trickles down the drain.

“Jess, Darling,” she would say, “How many times do I have to tell you? You must squeeze all of the water out of the washcloth before laying it out—otherwise it won’t dry thoroughly and it will start to smell sour.”

Ah, my mother and her rules. As a kid, I was always breaking one or another of them:

Don’t leave the icebox door open, you’ll let the cold air out! (To this day she refers to the  refrigerator as an “ice box” and aluminum foil as “tin foil”)

No riding double on a bicycle—you’ll get hurt. (This I now agree with, but as a child, it ticked me off to no end.)

Take a sweater with you—you might get chilly. (I am fifty years old and she still says this to me as I go out the front door.)

No taking a sip of liquid with your mouth full of food (even if your tongue is blistering)  because it’s unbecoming. (This one goes along with no elbows on the table and not clicking the fork on one’s teeth while eating.)

Always look both ways before crossing the street, and then look one more time. (I now see that this is a vital one and have instilled in it my own kids.)

I’ve lived with my mother for practically my entire life, and by now, I’m used to her rules. After twenty-five years of marriage and four children, I no longer feel compelled to follow them unless I wish to, but they are so ingrained in my psyche that I still feel guilty standing in front of the “ice box” allowing the cold air to escape.

It’s somewhat embarrassing to admit to others that I still live with my mother, so I usually phrase it “my mother lives with me.” I’m hoping to be perceived by the general public as a responsible grown-up. And it’s true; my mother does technically live with me, as my husband and I bought my childhood home from her in a very advantageous transaction except for the little clause that included her in the deal.

Don’t get me wrong. I adore my mother, but she is indisputably eccentric. I became aware of this fact early in life when I decided it was best not to invite my friends over on one particular Saturday afternoon because my mother was out gardening in the backyard wearing only a leopard print bikini bottom and a silk scarf tied around her breasts to minimize her tan lines. Her ridiculous outfit included a pair of lace up Dr. Scholl orthopedic shoes, white athletic socks and dirt-caked gardening gloves.

“Moooommm,” I whined, cringing at the sight of her. “Why are you so weird? Why can’t you act like other mothers?”

“Because weird is more interesting, that’s why,” she replied, going back to her begonias and fuchsias that could have won first prize ribbons.

Now at age seventy six, my mother had traded begonias for breeding Dalmatian puppies, which has opened up another whole can of crazy in our household. That, along with enough dog hair to stuff a mattress.mom and puppy

Peculiarities aside, my mother is the most non-judgmental person I know, and has the ability to accept everyone, warts and all. In her role as my greatest fan, she has always taken my side (even when I’m wrong) and has continuously encouraged me in my endeavors, musical and otherwise. Her openness has taught me that it’s best to speak your own truth— and that holding on to the excess will do nothing but leave a sour taste in your mouth.

One of the very best things about my mother is that she even loves me when I’m unkind to her. The other day I told her that her barbershop haircut made her look like a man—I even (jokingly) referred to her as “Grandpa.” Don’t worry, I didn’t hurt her feelings—she laughed as hard as I did at my snide remark.

One of my closest girlfriends recently lost her mother. In our tight-knit group of ten junior high school friends, none of us has lost a mother until now. It scared me. It suddenly occurred to me that my mother will not be here forever, and that someday my much-needed source of unconditional love will be gone. What will I do then? Who will tell me I’m perfect?

I think about this as I lean over the sink, twisting the washcloth as my mother taught me so long ago. I wipe up the mess I’ve made and vow to be kinder to my mother. She is older now, and no longer has the strength to squeeze out the excess water, but I do.

Today I will make it one of my rules to tell her how much she means to me. And because her devotion to me includes reading every single word I write, I’ll tell her right now.

Mom and me, circa 1972

Mom and me, circa 1972

Thank you, Mom—for being you. I love you.

The two of us today

The two of us today

Jessica Winters Mireles

Photo of Jessica Winters Mireles

The Author

About Me

I'm the woman you see at the grocery store: no make-up, hair in a haphazard pony tail, worn jeans and a stained t-shirt. What you don't see is that I'm complicated and interesting on the inside--just like you! I'm the mother of four incredible children, the wife of Rene, and a friend to many. I've been a piano teacher for over twenty years, and when I'm not being paid to nag other people's children to practice, I'm either tending to my flower garden, or somewhere with my nose in a book. I'm adding a little writing to the mix now, just to keep things interesting....

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