Archive | February, 2012

Dirt under my Fingernails

26 Feb

Last Friday, I was in my usual rush. Being in hurry mode is nothing out of the ordinary for a busy mom like me. I always seem to be urgently driving from one errand to another in my mad dash to accomplish as many tasks as I can in the morning hours before picking my daughter, Isa up from school and teaching piano lessons in the afternoon.

It was yet another perfectly sunny day in the coastal California paradise that I call home—where the climate offers the perfect temperature; where the perfectly blooming sage-covered mountains meet the perfectly bluish-green water of the Pacific; where I live in a perfect little home that has a perfectly huge mortgage and is no longer worth what we owe on it and we are so perfectly under water that I can barely breathe sometimes.

As I drove down the road, I passed by La Sumida Nursery, by far my favorite place in the entire world (if you don’t count the bakery or the library or the pizzeria) and my tummy began to quiver like there were little butterflies in there trying to break through the lining of my stomach. This was the first time in a long while that I’d felt a flicker of excitement about anything. I thought, “This weekend would be the perfect time to plant my spring garden—I should stop in there and buy some flowers…”

If you don’t already know this about me, I love to garden. Planting bulbs and spring flowers is the closest I can get to heaven down here on earth, other than eating anything that contains chocolate. For me, there’s something almost spiritual about digging my fingers into the soil and planting a mass of flowers that forever keep their promises of bursting into cheerful bloom within a few weeks. My flowers have never disappointed me.

Shoulda, coulda, woulda. I kept driving.  I was already late for my next appointment and I needed to stop at the grocery store to pick up something to make for dinner. In this lousy economy, I certainly didn’t have the time or the money to spend on frivolous things such as two or three flats of bedding plants. And who was I to think that I deserved to do something thoughtful for Jessica? My responsibility in life is to take care of other people—not myself!

But after a long winter of sadness and loss, my emotional equilibrium has not been up to snuff. I’m experienced enough to know that life does not always come up roses, but I was becoming impatient waiting for things to get better.  I was tired of being sad and worried and frustrated and I needed to find a way to heal my heavy heart.  Perhaps a little gardening was just the thing to get me back into the flowering land of optimism.

Before I knew what hit me, a force beyond my control began to pull at my arms, and the steering wheel cranked to the left and I made a screeching illegal u-turn into the parking lot of the nursery. I would just stay a minute to take a peek and see what they had to offer.

As I walked into the patio area where the six packs of flowers were kept, I noticed how sparse the pickings were. There were fewer than half of the usual tables of bedding plants.  My heart sank—such crushing disappointment! I shouldn’t have been surprised—after all, it’s only mid-February—how could I expect that the usual smorgasbord of varieties would be available? I shouldn’t have stopped. Maybe this whole idea had been a mistake.

Salpiglossis--my favorite flower.

Yet as I headed toward the back of the patio, I realized that there really was plenty to choose from, I just had to spend a little more time looking. Within five minutes I had filled up three flats with larkspur, delphinium, hollyhocks, dianthus, and lucky for me, tucked away in the corner they even had my favorite—salpiglossis (velvet flower)—of which I promptly cleaned them out!Another five minutes later I was back on the road and the only collateral damage was the $70 charge on the one credit card I haven’t completely maxed out.

On Saturday afternoon, I found myself utterly alone (with a family of seven, this rarely happens) and the garden beckoned to me. “PLANT ME, PLANT ME,” it practically screamed.  I dug out my bucket of rusty tools and laid them on the grass. The sun was warm and the soil was dark and rich and I got to work.

For three hours, I used muscle groups I’d forgotten I had (I know this because right now said muscles are shrieking in pain) planting and digging and deeply breathing in the fresh air of early spring.

When I was done, I surveyed my work. It didn’t look like much—at least not yet—but I knew the potential was there, and I was willing to wait and watch it reveal itself. With a little tending and attention, my garden will once again blossom into a mass of fragrant color.

Patience, Jessica. The wait will be worth it.

And really, all it took was a little dirt under my fingernails.

Dirt under my fingernails.

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.

The Heavy Wet Coat

3 Feb

I’m beginning to realize that I write about cancer a lot—probably way too much. This is something that I can’t really help though. Since my daughter Isa was diagnosed over four years ago, I’ve become increasingly surrounded by cancer. I read about cancer; I blog about cancer; I post on Facebook about cancer. I talk endlessly about cancer. Before Isa got leukemia I never knew that there was so much cancer around me! It’s like when you buy a new car, you keep seeing the very same make and model all over the place—everywhere you go, there’s that same car! That car must have always been there, driving around in front of me—why did I never see it before?

I now have a whole new set of friends from this “cancer” realm whom I’ve come to love dearly. Many of them are parents of children who have cancer right now or have had cancer, or they work with kids who have cancer. These are people who I admire most in the world because they are the strongest and most courageous people on this earth, even though they don’t realize this about themselves. And most of them are really funny, too—because when you face something so hideous, you have to learn to laugh a lot because it helps take away the pain for a little while.

Now, you may like to read what I write about this crappy disease, because 1) reading about other people’s pain and suffering is always interesting in itself, and 2) it may make you very much appreciate that you or your child does not have this crappy disease and therefore you may try to live your life in a manner that is conducive to allowing the joy in and letting the fear out. I hope your reason for reading is the latter, but both reasons are legitimate and acceptable.

My mother asked me the other day why I write about so many sad topics in my blogs. Sadness has always made her uncomfortable. I told her that I felt it was important to feel sad sometimes—it’s healing for the soul. Crying often and noisily is something I highly recommend to everyone. I do it almost every day. I did the opposite for most of my life and after stuffing my pain down deep inside for so long, I’ve finally realized that it doesn’t work too well. The pain will eventually find a way to work itself out, often in unhealthy ways.

My mother did not jump on board with this idea of embracing pain as she’s not a big believer in unhappiness—she spent much of my childhood trying to convince me that everything was wonderful all the time. And sometimes it was wonderful, but often it was not. But God bless her, she has a hard time dealing with painful feelings, and she has a good reason.

When she was only ten years old, she had a fight with her little brother Johnnie. It was nothing out of the ordinary, just a silly fight between two siblings. But immediately after the fight, Johnnie ran out into the street and was hit by a truck. He was killed instantly. To this day, I don’t think she’s dealt with that pain. And who can blame her? How does a little ten year-old girl get over the fact that her younger brother died so suddenly?  In her child’s mind, she probably thought it was her fault. Weeks after his funeral, which my grandparents made the mistake of not letting her attend for fear it would be too upsetting, my mother asked them for a Dalmatian dog. Her argument was that she no longer had a little brother, so she should have a dog. It worked—she got her Dalmatian. And now guess what she does over sixty years later? She breeds Dalmatians. We do what we have to do to work through our pain, even if it takes a lifetime.

Pain is something that we all wear like sodden wool coats after a rainstorm. We hunker down under that heavy material and think that we’re protecting ourselves, but in reality, the coat just gets wetter and heavier and eventually starts to smell bad like a dank, wet dog (sorry dog lovers—I don’t mean to offend—I just hate the smell of wet dog.)

Every single one of us carries painful baggage around from our life experiences. Because we’re afraid to show others that we’re scared and vulnerable and that we need help, we walk around pretending that we’re not immobilized by that heavy, stinky coat. This is where childhood cancer can sometimes work its magic.

Please understand that I would never try to climb into the heads of every parent whose child has cancer and presume that I know what they’re thinking and feeling. But I know what has gone on in my head, as well as talked to many parents who’ve been through it, and I’ve come up with the conclusion that you just can’t wear a heavy, stinky coat when your child gets cancer.

You have to take it off because your primary focus now becomes the life of your child. And in order to take care of a very sick child who might possibly die, you have to allow others to help you. So you have to show your true self—that real person that’s been inside of you all along but was just burdened by that heavy, wet coat of fear. Even if you’ve never asked anyone for help in your entire life, you have to do it now. Because nothing else matters except that your child is okay.

The most astonishing thing is that people want to help you. They will do just about anything to make you feel better—they will cook food for you, they will give you money, they will give wonderful presents to your child. They will hold fundraisers so that you can stay with your child and still be able to pay your bills. They will love you unconditionally. And I’m not just talking about people you know! Even perfect strangers will reach out to you. Through their actions, they will demonstrate that deep connectivity that we all share with each other as we travel together through this crazy journey of life.  They will rise up and prove to you just how good human beings can be. This is the magic of cancer.

The remarkable thing is that it doesn’t take a child getting sick for you to remove your stinky wet coat. You can take it off anytime you wish. When cancer (or any tragedy, for that matter) affects someone you know and love, it dawns on you that every single moment of our lives is a treasure. There will be times when see the dark clouds on the horizon and you will want to put your coat back on. Don’t do it! That wet, heavy coat was only stopping you from moving around freely.  By taking it off and leaving it off, the love and forgiveness and gratitude that you experience will allow you to stand unencumbered in the sunshine and be warm for the first time in your life.