Gillian’s Heart

17 Jan

Princess Gillian Margaret Winters

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.

Isa had become restless and bored being cooped up in the room. We’d already watched enough Wonder Pets and Sponge Bob to last us a lifetime, so it was up to me to come up with new ideas to entertain a two-year old with an I.V. line tethered to her chest. So I colored, I painted, I read stories, and I played endless games with finger puppets—I’m ashamed to admit I spent more quality time with Isa in those first five days in the hospital than I had with her during her entire two and a half years of life. Once again, I’d let the demands of life steal me away from what’s really important.

I was thinking about what to do next with Isa when I looked up and saw my younger brother, Tony through the window in the door.  He smiled at me through the glass, but it wasn’t a real smile—it was more like a grimace. I could tell he was uneasy and I knew why: the last time he was at the hospital was on that terrible August night five years earlier.

Tony came into the room and handed Isa a present—a toy doctor bag, complete with a tiny stethoscope, syringe, thermometer and blood pressure cuff. She was thrilled with the gift, but her pleasure hardly registered with him. His utter distress at seeing the I.V. line that snaked across the bed into Isa’s chest was not lost on me.

“Jess, you know Mele would be here if she could,” he said, his eyes darting around the room at all of the machines.  “But it’s just too much for her to handle to come back to this hospital.”

He reached up with his hand and rubbed the bridge of his nose.

“Especially in these circumstances,” he said. “After what happened with Gillian and everything….it would just be too devastating if something happened to Isa.”

I immediately cast his comment out of my head like a door slamming shut. Nothing bad will happen to Isa—it will not be like Gillian.

While Isa played with the doctor bag we talked quietly about her prognosis and treatment for a few minutes until Tony stood up abruptly and grabbed me in a bear hug.

“Sorry, Jess,” he said, “I’ve got to get out of here. This place just has too many bad memories.” The sorrow in his heart poured out of his chest and into mine—we were connected in a way that to this day, I still can’t explain. He let go of me and I could see the tears in his eyes.

My little brother caressed my daughter’s cheek with his fingertips and then he was gone.

My brother, Tony holding Gillian.

I wasn’t angry that he only stayed for five minutes. I could only imagine how difficult it was for him to come back to the hospital in the first place. With Isa’s life at risk, I could more closely imagine the fear and pain he went through the last time we were all gathered together at the same hospital.

The night his only child, Gillian, died.

I have many regrets about how I treated Gillian, but the one thing that I’m thankful for is that I let her help me make those oatmeal cookies that one last time. Normally, I would have been annoyed that she wanted to help me—she would have heard the irritation in my voice as I said, “Gillian, let me do this. You go and play—go watch cartoons or something. Let Auntie Jessie do it.”

I would have been unkind to Gillian because her behavior made me feel edgy—probably because I didn’t have the power to control her. And I was a big fan of being in control.

My niece, Gillian Margaret Winters was born on Valentine’s Day.  This is undoubtedly why she was filled with an unbridled love for everyone around her. Gillian even looked like a Valentine’s cherub—put wings on her back, hand her a bow and arrow—she’d be a ringer for Cupid any day. Gillian was also obsessed with the color pink.

Pink was her color of choice for everything—her bedroom was a vision of bubble gum pink, the walls stenciled with magenta hearts. She loved pink girly things: dolls, dress-up clothes, stuffed animals; you name it. Gillian was certainly meant to be a princess, or perhaps a Barbie stand in, because she had the taste and style that fit perfectly with the colorful job description of either of these titles. She adored Disney movies, especially those that had to do with princesses or fairies.

Gillian with Minnie at her favorite place on earth.

Gillian, or “Jelly Bean” as we often called her, was what you’d describe as a free spirit—or to me, spoiled and uncontrollable. She was my brother’s only child and she most certainly called the shots. She had a difficult time following instructions and always wanted to do things her way.

As an energetic six year-old, she would dart mischievously from one thing to the next, constantly leaving a mess in her wake. She loved to play more than anything, and her active imagination was always as work creating stories in her head. When she begged her parents for a baby brother and it didn’t happen, she made up an imaginary little brother whom she named Josh, who was always excellent company when she had no one to play with.

My brother and sister in law were the “laid-back” type of parents who gave Gillian the freedom to explore life, and they allowed her to express herself in ways that I never did with my own kids. I wasn’t comfortable with Gillian’s willful behavior, as my husband and I tended to be stricter and more controlling with our own children. My kids were calm and obedient and Gillian wasn’t. She didn’t fit into my neat little box of how children should behave.

I guess I resented Gillian for her lack of self-control, which in hindsight I realize how ridiculous my attitude was because she was just a child. Because of my hardheadedness, I never allowed myself to grow close to her. And for the rest of my life I’ll regret that I didn’t open up my heart and accept and love her for who she was.

Inexplicably, on that hot August afternoon when Gillian and my brother came over to swim in our pool, I had a sudden change of heart. I invited her to make oatmeal cookies with me for the first time ever. I wouldn’t have considered doing this usually—I would have avoided the ordeal of making a mess with Gillian at any cost.

But that day, my husband and children were still on vacation in Mexico and wouldn’t be home for another week, and I was lonely. I thought a little girl time was in order.  Gillian was thrilled with the invitation and she sat eagerly at the kitchen table, waiting for my instructions in her bright pink two piece bathing suit which was still damp from the pool. Her face lit up with excitement as her curly hair dripped like little wet ropes onto her shoulders.

I let her measure out the ingredients one by one into the bowl, her brow furrowing as she stirred the batter with a large wooden spoon. She looked like a little sunburned witch as she mixed the ingredients, the sweat beading on her upper lip. She scooped out the sticky dough from the bowl with her chubby fingers, rolled the balls between her palms and placed them on the cookie sheet like she’d been working in a bakery for years.

I didn’t even care that she left a mess on the table—clumps of oatmeal stuck to her fingers as she repeatedly dipped into the bowl for taste after taste of the gooey dough. When the timer on the oven dinged, signaling that the cookies were done, I helped her use the spatula to take them off of the pan and place them on the counter to cool.  The entire time, she was a delightful little angel.

With two tall glasses of cold milk between us, we ate the warm, delicious cookies together, happy and proud of ourselves—Gillian for actually making the cookies, and me, for not becoming annoyed with her during the process. It was a lovely and enjoyable afternoon between an aunt and her niece; something that should have been a common occurrence between us, but hadn’t been because I’d never allowed it to happen before. I don’t know why I was different with her on that hot summer afternoon, but I was.

Wearing pink, of course.

And thank God I was, because it was the last time I would ever see her again.

Two weeks later, while having dinner at the YMCA, at only six and a half years old, Gillian died after choking on a hot dog.

It was a Friday night when we got an odd phone message on our voice mail. It was a friend of Tony and Mele’s and she was talking so fast I could hardly understand her.

“Gillian choked on a hot dog at the YMCA and they’ve taken her to the hospital. I can’t get a hold of Tony or Mele—they’re not answering their cell phones. Please see if you can reach them!”

When we couldn’t reach anyone, our entire family piled into car and we raced north forty miles to the small community hospital where they had taken Gillian. There, a group of my brother’s friends congregated outside the entrance to the emergency room. For a summer evening, it was very cool and everyone huddled together looking stunned. My brother came out and told us they were transferring Gillian to a larger hospital in Santa Barbara, where we had just come from two hours earlier.

Tony and Mele had left Gillian at the YMCA for a program called “Parent’s Night Out” in which people could leave their kids in a supervised environment where activities and dinner are provided for the children so the parents could go out alone together. Tony and Mele had almost decided not to go out that night, but Gillian had insisted that she wanted to go to the Y and play—she loved going there. They dropped her off and went to meet some friends for dinner.

While at dinner, they couldn’t hear their cell phones ringing with all the noise in the restaurant. Afterward, walking to their car, they finally got all of the messages about what had happened to Gillian and they rushed over to the hospital.

That night at the Y, they had served hot dogs for dinner. Gillian, always a fast eater, was also eager to get up and play, so she shoved the last big bite of her hot dog into her mouth and got up to throw her plate in the trash. As she was running to the trash can, she began to choke.  The staff at the Y tried everything they could to dislodge the inhaled food, but nothing worked. Even the paramedics couldn’t get it out.

Sometime during this chaotic chain of events, Gillian threw up and aspirated into her lungs. Later we learned that her heart had stopped three times during the ambulance ride back to Santa Barbara, but the paramedics would not give up on her—they kept bringing her back, again and again; they did everything they could to keep her heart beating.

After arriving at the hospital, Tony and Mele anxiously walked up and down the hallway, still dressed up in their fancy clothes from their dinner date while the doctors worked on Gillian.  The heels of Mele’s black pumps clicked and echoed on the tile floor of hallway as she paced back and forth under the fluorescent lights. The waiting was excruciating.

When you’re in this horrific situation of waiting to find out whether a child you love lives or dies, you vacillate back and forth between the extreme feelings of terror and hope. But I knew it was dire when the ICU doctor came out and asked to speak with Tony and Mele alone in the hallway.

The next thing I saw was Mele walking into the waiting room with this dazed look on her face and her shoulders just sagged.  She whispered, “That’s it… They can’t do anymore. She’s gone.”

Everything went into slow motion. This couldn’t be real. I fell to my hands and knees on the floor as my three children began to weep. My poor mother looked like she was going to pass out. Through the roar in my head, I heard my husband tell my brother how sorry he was—his words were almost unintelligible through his tears.

The sight of my baby brother sliding his back down the wall to the floor with his head in his hands, crying, “Why my little girl?” over and over, in a child-like whimper will be imprinted on my mind forever.

Gillian and Barbie resting with Daddy.

Our family held a memorial for Gillian at our house because she loved to come over and swim and to visit Grandma there. Tony and Mele wanted to keep it simple and informal—so they turned it into a pink party—just what Gillian would’ve ordered.

Hundreds of people showed up. The casino where Tony worked generously paid to have the entire party catered, and we were completely floored by the many people who came to demonstrate their love for Tony and Mele and Gillian. The obituary asked everyone to wear pink in honor of Gillian, and sure enough, they did; some even brought along bouquets of pink roses.

Hundreds of pink helium balloons were tied to the mailboxes that lined our street, and when the party was all over and everyone went home, our family gathered the balloons together in bunches and let them go.  We watched them fly away until they looked like nothing more than little pink jelly beans against the bright blue sky.

When someone dies, it’s always difficult. When a child dies, it’s unbearable. Tony and Mele were like any parents who have lost their child: devastated to the point of going completely insane. They had to do things a parent should never have to do: they had to visit Gillian’s first grade classroom to talk to her classmates about her death; they had to clean out her desk and pick up the belongings that she had left behind; and worst of all, they had to somehow accept that their daughter was never coming back to them.

Inside Gillian’s desk in her classroom, they found an envelope labeled, “Loose Ends” which was used as a place to store assignments that had not been finished. Normally, Gillian’s envelope was stuffed full of incomplete work, but that day, when they cleaned out her desk,  her envelope was empty, like she had purposely taken care of everything before she died.

Tony, Gillian and Mele at Disneyland, where they celebrated her birthday every year.

A few days before her death, she had also insisted to her mom that she wanted to clean the clutter off of her bulletin board in her room; she had never asked to do this before. Tony and Mele felt strangely comforted by these events, like Gillian had somehow known she was going somewhere, and had been preparing for her upcoming journey—as if she had other important and significant things to do elsewhere.

Only a pink heart birthday hat would be acceptable.

A week after Gillian’s death, Tony and Mele decided that they needed to get away; so they got on a plane and took a trip to England to visit Mele’s grandfather. While there, they decided to take a side trip to Paris and see the sights in a vain attempt to take their minds off their grief for a while.

In Paris, on a warm September afternoon, they made the long climb up to the top of the Eiffel Tower. When they reached the pinnacle and looked down, they saw something that they were not able to see when they were on the ground. To their amazement and joy, way down below them was a huge pink heart. To them, had to be a message from Gillian, letting them know that she was all right; that her loving spirit was still present for them, and would stay with them forever.

Three weeks after Tony and Mele returned home from Europe, Mele found out she was pregnant again. The following July, she gave birth to a baby boy and they named him Joshua, the very same name of Gillian’s imaginary little brother—imaginary no more. Gillian finally got her heart’s wish.

After Gillian died, I became a believer that good always comes out of bad. I know this because I experienced such a profound change in myself after her death. I began to see my brother and his wife in a completely different light: that they are incredible people who were able to handle such tragedy with so much grace. After losing Gillian, my heart finally began to open up and an unconditional love for them—the kind of love I always had the potential to feel flowed out of me like a waterfall after a rainstorm.

My relationship with Tony and Mele has changed drastically. I enjoy being in their company now—I look forward to spending time with them. I no longer judge them. So much good came to light after Gillian died, and although I’m devastated that she’s not here with us, I am grateful for the gift she gave me: the knowledge that love and acceptance is what keeps your heart full.

I realized the truth in this even more as I sat there in that hospital room, facing the unknown with my daughter, Isa. I was terrified about what could possibly happen, but still able to feel such gratitude for all of the good things that were presented to me each day. Because Gillian’s death had opened my heart, I was more able to understand the lessons I was being taught.  Within those lessons, the message was and is still clear: it’s all about love.

Just like that big pink heart in Paris—it was always there, even if it wasn’t visible from the ground.  Sometimes you just have to allow yourself to climb up and be in a place where you can see it.

Gillian would have celebrated her sixteenth birthday on Valentine’s Day.

Love your children like there’s no tomorrow, because sometimes tomorrow doesn’t come.

15 Responses to “Gillian’s Heart”

  1. Kristin Schwartz January 17, 2012 at 3:29 pm #

    Wow. You pulled it all together so beautifully in this piece, Jessie. The part, “Just like that big pink heart in Paris … you just have to allow yourself to climb up and be in a place where you can see it.” Perfect!

    I remember when Gillian tragically choked on the piece of hot dog and I’m still a paranoid mess whenever I’m around hot dogs and small children. Actually, I must admit that I still warn my kids to eat carefully each time we eat hot dogs. They know the story well and put up with me though because they know how much that tragedy scarred me.

    • Allegro non tanto January 17, 2012 at 3:50 pm #

      Something like a child choking on a hot dog always happens to other people’s kids–just like cancer. But sometimes it happens to you and you can either fall apart completely or somehow keep going like Tony and Mele did. I still get nervous around hot dogs, too.

  2. Lynne Gillespie January 17, 2012 at 7:32 pm #

    Jessie, You, are a writer. I cried, I smiled, I wanted, want, to hug you, for the self deprecating comments. Gillian was a “force of nature” but NEVER think or feel you loved her less than you should.

    Were she to be here today, she would still frustrate with her whirlwind manner and you, I and all that love her would still be tyring to fit her into a mold,a task we would all thankfully fail in.

    Isa went through heartbreaking procedures that would not be wished on anyone. I look at her now and marvel at the perffect little girl who seemingly has not a care in the world, thanks in no small measure to your family love that surrounds her.

    I am proud to be a member of this family. Mele is my heart, and my constant source of pride at the woman she is, the family she has created and nurtured.

    • Allegro non tanto January 17, 2012 at 7:49 pm #

      I so wish that Gillian were back here with us, as I would do things so much differently. Why is it that it takes such a hard lesson to wake us up to what’s important and precious in life? Mele is a jewel, that’s for sure (and I know where she gets it from!) Love you!

  3. Mele January 17, 2012 at 8:21 pm #

    Thank you so much for writing this Jess. I don’t ever want you to feel though that you were nothing short of a great aunt to Gillian. Before she died we were just all going through our lives with those blinders that made us think that we were untouchable and knew everything. Now that she has passed and Isa has spent more years than I care to count fighting and conquering a terrible disease we both have emerged with a new outlook on life and love and probably a little bit of survivors guilt thrown in for good measure. We ultimately are better people for what we have been through and I love this new outlook of yours! Keep up the are amazing and I am so incredibly lucky to have you and Rene and the kids in our lives.
    Hugs and Kisses

    • Allegro non tanto January 17, 2012 at 8:25 pm #

      If you only knew how much you mean to us, Mele. You are so special–you were a wonderful mommy to Gillian and now to J.J. Tony is lucky to have you, too! I have so much gratitude in my heart for our family and this is largely due to the lesson that Gillian taught us!

  4. Becky Green Aaronson January 17, 2012 at 11:17 pm #

    Jessica, I will never forget the first time I heard you read this story. It touched every emotion and left me thinking about it for weeks, if not months. Reading it now, it knocks me over once again. And seeing your family’s pictures and reading their comments only adds to the power of your story. Thanks for sharing this with us all. It’s a beautiful tribute to a beautiful girl, and a powerful reminder of what’s important in life.

    • Allegro non tanto January 18, 2012 at 6:27 am #

      Gillian’s story is a powerful one and her legacy is that she touched so many lives through her death. The truth is that every child who dies teaches us something valuable, whether it be to have gratitude for what we’re given in life, to just just to stop for a moment, slow down and breathe, or most importantly, realize that it’s the little things in life that mean the most. She was indeed a special girl.

  5. Kelly January 18, 2012 at 12:44 am #

    Written beautifully Jessie. No doubt that she is smiling and dancing and leaving pink hearts here and there for us all.

    I was one of the friends at the hospital that cool August night…..still the most horrific night of my life, but also the most beautiful too. Gillian left us that night, but she left behind the magic that she gifted us all. Live life to the fullest, do what you want, dream, imagine, believe, have fun and LOVE with all your heart.
    My daughters didn’t get the opportunity to know Gillian, but if you ask them who she is…they both will tell you….Auntie Mele’s daughter…Nicholas’ best friend. Her memory is shared often in our house, because of the true beauty she graced our lives with and the mark (heart shaped and pink of course,) that she left on our souls.


    • Allegro non tanto January 18, 2012 at 6:30 am #

      Kelly, I remember standing outside the hospital with you that terrible night almost ten years ago. Gillian certainly did teach us all to keep love in our hearts–I know that my capacity to love expanded after she died. What a lesson she taught me! I will always appreciate her for that because through her death she helped turn me into the person I was supposed to be all along.

  6. Gabriela January 21, 2012 at 12:48 pm #

    Oh,Jessie I was so upset and angry with you while reading the first part of the post about your niece, but I am one of those people who do not like to leave book unfinished…and then I was happy I did and that I finished, all the best to your brother and sister in law, and THANK you for being so honest and open, and for that last sentence.

    • Allegro non tanto January 21, 2012 at 12:51 pm #

      Gabriela, you always have to wade through the bad to get to the good!

      • Gabriela January 21, 2012 at 12:54 pm #
  7. Allegro non tanto February 14, 2013 at 11:24 am #

    Reblogged this on Allegro non tanto and commented:

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

  8. Becky Green Aaronson February 14, 2013 at 2:55 pm #

    Jessica, I’m so glad you shared this again. Each time I read it it knocks my socks off all over again.

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