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Inspiration
29
Jul
what remains
29 July 2012 Sunday

Isabella Joanne Santos   |    March 9, 2005 ~ June 28, 2012

One afternoon in late summer 2010 a pretty, vibrant mother with long dark hair will come breezing in to the studio to buy the largest quantity of art classes available.  She will tell you how much her daughter just loooves art and will mention almost as an oh-by-the-way that her daughter has cancer.

The first time Isabella comes to class, you won’t really know what to expect. She is an energetic, healthy looking little five year old and there is nothing about her appearance, demeanor or personality that clues you in to her dreaded disease, Neuroblastoma, except that she has a quarter inch of fuzzy hair and a prominent scar on her head. While chit-chatting waiting for the other kids to arrive, she informs you that her favorite song is Party in the USA by Miley Cyrus. As you fire up the iPod in the studio, as if in a trance she jumps up and launches into a full dance routine, completely oblivious to you, the other teacher, or any of the kids watching her. She’ll continue to regale you with her concert-worthy performance for the duration of the song without ever slowing down. It will be obvious to you that she’s dancing for her own enjoyment rather than anyone else’s, and you’re pretty sure she couldn’t care less that anyone else is even there.

“Isabella, WOW that was amazing! Where did you learn to dance like that?!”

“My Dad,” she’ll casually reply as she sits back down not even the slightest bit out of breath, and asks what we’re making that day.

From that first day in class, each time you see her you will never know if it will be the last. Not wanting to seem inappropriate or focused on her illness, after the other kids leave, you and your friend Alison, who is helping at the studio that day, send her home with a blue zebra stripe tutu and matching case filled with art supplies, hoping you’ve made some small impression on her and that she enjoys them when she’s in the hospital. From that day forward, pretty much every time she comes to class she will wear the tutu, but almost two years later you won’t be entirely sure that she knows your name or any of the other teachers. Unlike most kids her age, she is completely self-possessed and never seeks approval, validation or any kind of reassurance, and as long as you pass her the color she needs, your presence is of relatively little importance. She will often sign her artwork Isabella Joanne, and over time you will become pretty convinced she is an old soul.

 

She will attend Saturday classes fairly regularly, sometimes every few weeks, sometimes every few months. In the all-too-brief time that you will know her, she’ll paint a colorful heart on canvas for Mother’s Day, a chalk pastel “love-a-saurus” for Valentine’s Day, a watercolor dragonfly, a cat named Jake, a dream catcher filled with miniature drawings of everyone & everything she loves, a flying cow, and you wish you could remember what all else. You always take lots of pictures of the kids’ artwork but you’ll later wish you had taken a lot more of hers. Sometimes she’ll be completely bald, other times she’ll have short red hair. Standing in line at the sink one day a little boy will nonchalantly ask her why she doesn’t have any hair, and she’ll just ignore him, completely unfazed.

Often, the spunky little girl who comes to class doesn’t seem to be the same one that you just bawled your eyes out about while reading her mother’s Caringbridge journal, sometimes seeming to bounce back to good health almost overnight.  Every now & then you’ll almost forget that she is even sick, except when she suddenly stops painting and crawls up in your lap and hugs your neck like a baby tree sloth.

In class, she’ll mostly talk about her cat, her big brother & baby sister, her grandma, DisneyWorld & the TopCats. She’ll stubbornly reject any creative suggestion you will ever give her about her artwork, preferring always to do it her way. She’ll have very particular ideas about how she wants to do things and one day when her penguin’s wings don’t look quite right to her, she will actually stand up and stomp her foot and refuse to continue when you won’t let her start completely over five minutes before the end of class. On more than one occasion you’ll be slightly embarrassed when her mom picks her up and sees that she is visibly upset or has just barely stopped crying.

One day during summer camp in 2011, at snack time you’ll ask her if she wants to tell everyone about her upcoming 5k race. She’ll look nervous and say “I don’t know.” You’ll drop it but a few minutes later she’ll come up to you and, her voice shaking a little, tell you she decided she would like to tell everyone. She’ll walk to the front of the table and courageously announce that she has a race every year to help kids all over the world who have cancer, it’s called the Isabella Santos 5k, and she even has her own website! And its ok if you don’t want to run, you can just walk and you will still get a t-shirt! Normally pretty rambunctious at snack time, the kids will sit silently listening. You’ll jump in and quietly explain that Isabella has cancer but that she’s in remission, does anyone know what that means? Struggling to make them feel comfortable enough discussing it, you tell them it’s ok if they want to ask questions.  { silence  }  “Miss Jennifer, what are we are going to paint next?”

During the Christmas holidays that year, you’ll be overjoyed that she has been doing so well with her recent treatment, and feel lucky to see her practically every day, sometimes twice a day. In classic Isabella fashion, she’ll waltz in to the cookie decorating workshop toting her own containers of orange decorations, not caring in the least that they are from Halloween. You like her style. In the Peppermint Forest gift-making workshop, she’ll track you down to ask you how to spell “Mrs. Keagy”.

One of the stations is a mulling spice sachet table, the concept of which is of course completely lost on the kids. { What were we thinking?? } Isabella will be running a tight agenda that day, so she’ll quickly bundle some star anise, cardamom pods & cinnamon sticks into a piece of cheese cloth, tie it with a ribbon, and announce that this one (whatever it is) is for her uncle. “Isabella – smell it! Doesn’t it smell good?” With several other stations yet to get to, she’ll just look past you and say “Not really.”  You’ll notice most of the other kids that day will also decide that a mulling spice sachet is the perfect gift for their uncle!

As we’re winding down before the end of the workshop, you’ll walk over to the book shelf and reach for The Giving Tree when Isabella comes out of nowhere excitedly announcing that book is her and her Dad’s favorite book – ever since her Dad was a little kid – and begs to please read it to the class. She’ll sit on your lap, reading it in a strong confident voice, stopping to instruct you to handle the longer passages she doesn’t want to be bothered with. As she is reading, you’ll watch her eyes and facial expressions and scan the room full of kids & a few parents listening so quietly and intently, and make a mental note to remember this moment.

The last time you’ll ever see her in April of 2012, she’ll show up in her tutu and a little fresh-picked red flower tucked behind her ear. Something is, but isn’t, different. Before class you’ll ask some of the new kids how old they are and Isabella will try to pull a fast one and tell everyone she is almost eight. “Um, ex-cuuuuuse me little missy, but I think you just barely turned SEV-EN! Ahem!!”  On June 28, 2012, when everyone who loves Isabella is forced to accept that she will forever be seven, you’ll remember her saying that and start to cry.

That day, you’ll find yourself wanting to follow her around with the camera a little more than usual, and feel a little weird when you are compelled to take a picture of her hand casually resting in her apron pocket, and her chubby little blue sparkly toes as she is standing at the wall painting. You’ll secretly be a little happy when her mom is late picking her up, giving you and Miss Hannah time for a quick off-the-cuff game of “Read. My. Lips.”. Isabella will start off giddy with excitement and can’t wait to stump you, but will quickly grow exasperated and indignant every time you guess her words on the first try. “How are you doing that??” she’ll moan, as her mom comes in the door.

You won’t really remember anything special about saying goodbye to her that day. You’ll later discover her little red flower that you set on your desk so she wouldn’t lose it, and will put it in a safe spot for her, unaware in that moment that she’ll never be back to reclaim it.

Of all the beautiful things that Isabella will leave you with, it will be the only tangible object that you can pick up and hold in your hand, as precious and weightless as a diamond.

The Isabella Santos Foundation 5th annual 5k Race for Kids with Cancer is Saturday, September 22, 2012.  Please help support this important cause by either participating in the race, making a donation to Isabella’s foundation, or helping spread Isabella’s story.

For more information, please visit:

Isabella Santos Foundation website and Facebook page.

To read Isabella’s story, please visit the Isabella Santos Caringbridge site.

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4 responses
  1. I loved this story about Isabella. Not only because she’s my daughter, (yes, this is daddy) but because you captured her spirit so perfectly. Your reference to her dancing to her own beat, with no need for anyone’s acceptance, along with the individual desire for perfection, was truly Isabella. She beat to her own drum. She loved to go to small hands big art, however at times we feared her sense of wanting it to be just right might have bothered your team. So glad to hear you enjoyed the time with her and understood her so well.

    As I read your reference to daddy teaching her to dance, a tear rolled down my face. Oh, how we loved to “shake our booties” to music, as we used to call it. So glad you were able to see her cut loose to the music. It was sooo cute. Also, the fact that she read the Giving Tree with the classmates was so very touching. That was such a special book for the both of us, and for many nights, part of our bedtime ritual.

    Thank you, and all of your team, for offering her so much love and support over the last couple of years. She absolutely loved art and it was 100% because of each of you. Thank you so much.

    Stuart Santos

  2. Connie myers says:

    Thank you for writing such a touching piece about Isabella. She really enjoyed your class and I remember taking her and picking her up often. We would open the back of the Navigator and carefully place her treasure of the day in the back to dry on the way home. Once she made me a beautiful beach picture that she glued seashells and netting and puffy clouds onto. She told me she made it for me because she knew I liked Hawaii. It is proudly hanging in my guest room and I smile whenever I see it. I also have witnessed the dancing that you wrote about and it was so fun to watch. She thought she was an amazing dancer and she certainly did dance for herself. She could shake her booty and when she added the singing she was truly in her own world. I loved it! She was an incredibly charming , unique and thoughtful child that will live in our hearts forever. Thank you for sharing your world with her, with us. Connie Myers or as I prefer to be called…….Grandma

  3. Jennifer, this is such a beautifully written, heartfelt tribute to Isabella! While I never had the opportunity to meet her, I followed her story on a parenting blog. She sounded like a very special little girl, who touched many lives during her seven years.
    I am so grateful for the love and attention that you give to each child that comes into your studio. It is so clear how passionate you are about teaching art to children. Thank you for finding and following your passion!

  4. […] 2012, we lost a sweet little girl who we were very fond of. Isabella Santos was only seven when she lost her brave five year battle with neuroblastoma.  She touched and […]