Leading By Example

Do you remember when you were in 5th grade and it was your birthday? Wasn't it fun to have a party with all your girlfriends and receive a bunch of cool gifts ~ perhaps some new clothes, a video game, a new CD, or maybe some great-smelling lotions and some bottles of nail polish?

I need to tell you about two young ladies from St Cletus School who recently celebrated their 11th birthdays together.

They hosted a party,

complete with yummy pizza and birthday cake and ice cream.

There were sounds of chatting and giggling,

and a lot of beautiful smiles lit up the room.

Just what you'd expect to find at the usual birthday party.

But... there was something REALLY SPECIAL
about this particular one.

No one brought gifts for the two girls
who were celebrating their birthdays that day.  

You ask ~ Why not?

Well, I am so pleased to share the answer with you!

It's because those young ladies had read my blog post about BRENDAN'S IDEA to collect toys and gift cards for The Pediatric Oncology Treasure Chest Foundation, and after doing so decided to ask their friends to bring gift cards to donate to the Foundation instead of bringing presents.

They understood that there was something more important than receiving fun birthday gifts like those listed above.  Instead of thinking of themselves, they put their own wishes aside and took the time to consider some children who are less fortunate.

I received a beautiful message from these girls ~

"Everyone hopes the cards can provide a little bit of happiness

to kids who deserve all the happiness the world can provide."

WOW!
Back in June, I wrote a post about Erin HERE, in which I said,

I'm filled with such intense hope that a little piece of her 

is somehow carried forth into everyone she touched, 

through the life she lived for eighteen short years,

before AND with cancer. 

That thought, of her sustained presence in some form, 
settles my heart these days.

And so ~

Alexis

Grace

Eliana

Emily

Heather

Lauren

MacKenzie

Madeline

McKenna

Phallyn

Rhyan

Tajia

YOU have settled my heart.
YOU have led by example, which is the best way to make an impact.
YOU have Walked the Walk, and not just talked!
YOUR actions speak to those of us watching.
YOUR kindness, generosity and selflessness is a lesson for all.

I'm so very proud of and deeply grateful to each and every one of YOU.
xo

We Were Wearing Purple

Last Monday evening Lyons Township High School hosted its Senior Night festivities for the varsity volleyball team, and in conjunction with this year's celebration the LT community graciously honored Erin.

Flyers were posted throughout the school and in the windows of local businesses the week prior to the event, encouraging attendance and promoting awareness of Erin's foe ~ Ewing's sarcoma. Donations for the Sarcoma Alliance for Research and Collaboration were collected through the sale of T-shirts designed by the members of the volleyball team, and also through the collection of that evening's gate receipts.

$2000!

We love the shirts!  Thank you girls.

During this annual ceremony, each of the team's seniors is recognized for her high school achievements, future plans are highlighted including college choices and intended majors, and those who've earned volleyball scholarships are acknowledged. A booklet, created especially for the evening, details some of those plans and also includes fun facts about each of the girls.

Of course I had to dig out Erin's booklet

and photos from her Senior Night,
including THE OFFICIAL CAKE PICTURE.

Coach P reminded everyone that there is always
THE OFFICIAL CAKE PICTURE.

She's right. Here it is!

Erin played volleyball at LT during her freshman and sophomore years, and then was sidelined by her hip/femur replacement surgery following her cancer diagnosis in December of 2006, at which point she stayed involved in the program as a team manager during her junior and senior years.

I have no idea what was going on in this photo, but it just makes me laugh to see the expressions on the faces of the girls as well as Coach Joann Pyritz's reaction. From personal coaching experience, I know that sometimes you just shake your head at some of the comments your players come up with during a game situation!

Advil anyone?

This relationship began years ago, when Erin first met Coach P at the age of six as she ran around the sidelines during her sister Sarah's high school playing years. At that time she impressed Coach P with her confidence and tenacity by boldly informing her she would someday be "better than Sarah"!  The youngest child in the family tends to be a bit more forthright:)

As the ceremony began on Monday evening, Coach P spoke to the crowd about Erin, and through eloquent words did an extraordinary job of capturing the essence of her spirit. She highlighted Erin's drive and athletic ability as a player, and then focused on her courage and positive attitude as the team manager once she could no longer play.

When each senior player was introduced, she was presented with a sunflower ~ the symbol of hope for those with sarcomas ~ as she joined her parents on the court for recognition. It was another lovely gesture of remembrance included in the ceremony.

Thank you to ALL who were in attendance, our little community once again ~  this time a sea of purple who filled the bleachers and rose to a standing ovation that brought us to tears. There were so many of you,

~ LT principal, assistant principal, and several of Erin's teachers
~ LT students
~ Parents of many of Erin's teammates and classmates who are now off at college
~ The Nazareth Academy sophomore volleyball team
~ Erin's volleyball coaches, from LT and Lions/1st Alliance
~ Players and families from Queen of Peace, the opposing team that evening
~ Members of our St Cletus family
~ The current LT volleyball teams and families
~ Anyone else I may have forgotten to mention above!

Your presence that evening spoke VOLUMES about the continued support our family receives that extends way beyond the walls of the buildings in which we gather.

And a special thank you goes to this year's seniors 

featured below in THE OFFICIAL CAKE PICTURE,

 who generously shared their evening in the limelight
with the memory of our beloved Erin.

HURRAY FOR
THE GOOD TIMES!

The Potts Family

Dave, Mary,
Chris, Sarah, Matt


and ^Erin^

Nothing Could Stop You

Nothing could stop you.

Not the best day.

Not the quiet.

Not the ocean rocking.

You went on with your dying.

Not the trees under which you walked,

not the trees that shaded you...

When you played with children

you went on with your dying.

When you sat down to eat,

When you woke up at night, wet with tears,

your body sobbing.

You went on with your dying.

Nothing could stop you.

Not the past.

Not the future...

Not defeat. Not success...

You lay on the bed.

You folded your arms over your chest

and you dreamed of the world without you.

Of the space under the trees.

Of the space in your room.

Of the spaces that would now be empty of you.

And you went on with your dying.

Nothing could stop you.

Not your breathing. Not your life.

Not the life you wanted.

Not the life you had.

Nothing could stop you.

~ Mark Strand

in spite of everything that was good and beautiful
and gracious and pure,
or awful and hard-fought
yet risen above and conquered by the heart,
she died

erin, our precious child, died
it happened
nine months ago today

we loved her to pieces
and still, she died

that world where she played and lived,
the familiar places of which she dreamt while she rested
and waited to pass to the next,
the world, that she knew would exist without her,
is indeed existing without her

but those spaces are everywhere,
and the lack of her presence in them
screams in the emptiness

no erin, nothing could stop you...

Walking the Walk

On December 15, 2006 I entered the cancer world, and my life changed irrevocably. From a mother's perspective, when your child is diagnosed with the disease, you contract it as well. There is insufficient biological defense within our systems, and no newly developed vaccine exists to counteract the insidious symptoms of horror, anguish, exhaustion and overwhelming suffocation by grief.

Any semblance of what I knew as normal shattered that day, and I stood helplessly as the shards of my existence flew in all directions, scattering about as I heard the words "I'm so very sorry to tell you that Erin has Ewing's sarcoma."

The largest shard found my heart, its flight path directed by my maternal homing device, and left it in a state that is irreparable.

Since December 18, 2009, I've worked earnestly to gather those strewn pieces of myself, align them in a cohesive pattern and move forward with the intention of orienting myself, finding my life's purpose now that Erin is no longer here. A portion of that process has been (and continues to be) accomplished through my writing endeavors, through the cathartic purging of ~ cancer/cancer treatment issues reflective of our own personal experiences, my responses to living a skewed existence both during the time Erin was sick and since she has died, coping mechanisms I've found helpful and comforting, reminiscent trips down memory lane through the use of many photographs with good times too abundant to count, and the encouragement of ongoing awareness through the avenues of blood donations and fundraisers. Your support through blog "comments", emails and generosity in response to those causes has been a critical part of my healing. Thank you.

While reading over my past blog entries, I discovered that the path to which I found myself drawn very shortly after Erin passed away and which I expressed in THE ROAD NOT TAKEN, written last March, is the same one I continue to walk, thereby affirming my continued resolution to engage in rather than detach from life.

For three years, I watched those who cared for Erin with a critical eye, most likely in a way that was more judgmental than I would have had I been the one with the cancer. My maternal protective instinct was front and center. I watched and I learned... a lot.

I found that it was not only the physicians that made the difference ~ God bless each and every one of them, those fine, educated, accomplished and compassionate individuals. They did everything possible, at first attempting to cure our child, and when that was no longer going to happen, they helped us make the best decisions for medical treatments that enabled her to remain engaged in a full life for as long as possible. And then, when it was time to take her home for the last time, they provided us with all the necessary resources, ensuring her continued comfort.

Even more than the doctors who were around only some of the time though, it was primarily the nurses, and then also the support staff of lab assistants, service representatives, registrars and even parking lot attendants & cafeteria personnel that helped create our new normal. Each had a hand in helping Erin learn to integrate successfully into a daily existence that was so unlike that of her peers. While she was getting hooked up to bags of toxic substances after school, her friends were all doing what she used to do ~ attending volleyball practice or going home to have a snack and watch TV.

Erin would get in the car after school, begin munching on the standard cinnamon raisin bagel with cream cheese I'd packed, pop open her Pepsi and say, "Let's go kill some cancer!", and we'd head off for her standing 2:30PM "practice" time. Daily drills included shouting "I call a chair in the back today!", accurate peeing into a "hat", and her very favorite ~ Port, port - where's the port? - Can we get it on the first stab please?!

All of those wonderful people not only performed the task at hand (scheduled labs, administered chemo, brought food trays promptly, etc) in an efficient and judicious manner, but they also used the time as an opportunity to take an active interest in Erin, getting to know her on a personal level and treating her as a unique individual.

They told her how pretty she looked, and asked how her vacation was and really listened with interest to the answer. They knew she was a Cubs and not a Sox fan, and they scheduled a room as opposed to just a chair on days I requested one because she had a test in school the next day and needed a quiet place in which to study. Later, our buddy Steve, who was Erin's home care nurse through the spring of her senior year, endured countless episodes of The Gilmore Girls after school during her 3-hour chemo sessions, and was often rushed out the door to "Please hurry up and unhook me because I have to get to the boy's volleyball game!".

The staff provided a positive atmosphere, a smile, a conversation pertinent to Erin's individuality and laid the groundwork for a sense of normalcy to the day-to-day circumstances in which she was forced to live for quite a lengthy time. They leant routine, and therefore, a sense of stability. As I initially floundered my way through the vast unknown of this foreign existence, I looked to these kind souls for guidance, and I found it through their competency and their grace-filled compassion.

Their direction gave me substance, something concrete to grab and hold as the cancer stubbornly forged on with a mind of its own. Through their example, I was able to understand that there are few things we ever really have control over in this crazy cancer life, but a couple of really important ones are the ongoing, consistent response and abiding dedication to the ones in need.

And then there's Erin who showed me, by the example of LIVING daily with her ever positive and spirited attitude, that it's truly possible to navigate both a world filled with chemotherapy, radiation & surgery, and a life where a "normal" human being ~ a teenager with interests outside the jaws of the medical giant ~ can really Have Fun.

After much introspection about all of the above, I find I need to stay with the cancer world. This existence, which I initially feared and detested, by necessity became my world, and I now find myself rooted here, grounded by an accumulation of STUFF (I'm at a loss for a better word!) deep inside me that needs to be shared with others through more than my blogging and awareness-promoting efforts, though those remain very important. This ongoing reflection has brought me to a crossroad.

Today, I begin the next step of my life, because I need to walk the walk I've talked about in my blog posts by stepping up to the next level. My new direction is full-time employment within one of the major Chicago-area hospitals in an adult oncology out-patient clinic. It is my intention to take my previously acquired work-related skills of accomplished plate-juggling (I'm up to twelve now!), an often neurotic attention to detail and the ability to smile and remain calm when things get chaotic, combine those attributes with the wisdom I've gained through those three years of critical observation and life experience, carry Erin's beautiful spirit in this broken heart of mine, and attempt to smooth the path for those who are presently at war with this potentially lethal adversary, deeply hoping to make a difference in my own little way.

Brendan's Idea

Our friend Brendan lives in our little community, and he recently approached me with a fabulous idea.

My name is Brendan Stepuszek and I am 15 years old. After reading an article in the newspaper about the Treasure Chest Foundation, I thought that it would be a very rewarding Eagle Scout Project. Becoming an Eagle Scout is an honor and the highest position one can obtain in the Boy Scouts of America. In order to become an Eagle Scout I must complete 21 merit badges and hold a service project in the community.

Brendan is pictured above with Colleen Kisel, founder of THE TREASURE CHEST FOUNDATION. This organization began locally in 1996, and since then has grown to include 37 locations across 11 states. Donations of toys and gift cards are collected through various fund-raising efforts, and then sent to the pediatric cancer departments of hospitals. There, the gifts provide children/teens undergoing treatment with a "little something" to make their day a bit easier, and in some cases with younger patients, less frightening. (Please click on the link to find out more specific details about this wonderful foundation, including its history and a list of all of the hospitals that benefit from the generosity of donors.)

Brendan has chosen to direct his service project to honor the memories of both Erin and Tyler, whose family also lives in our community.

Please see his flyer with more information below.

Clicking on the image will enlarge it.

Tyler lived with brain cancer for eight months,

and passed away in 2007 at the age of three.

He was treated at Children's Memorial Hospital.

Erin lived for three years with Ewing's sarcoma,

and passed away in 2009 at the age of eighteen.

She was treated first at Loyola University Medical Center,

and then at the University of Chicago.

All three hospitals are named on the website's list of centers that benefit from the donations of generous individuals. From a personal experience ~ Erin often received gift cards when treatment days took a little longer than expected. They were typically $5 cards for a fast-food place, like McDonalds or Wendys, and we'd do a drive-through for some fries and a shake on the way home. She also received cards for Best Buy, iTunes, Starbucks, etc. It helped!

At the time, I didn't even consider what the source of those gift cards was. It was one of those "little details" that someone else took care of. This has been another AH-HAH! & DUH! experience for me, much like the realization that all those units of blood Erin received during transfusions had to come from somewhere and they actually weren't just making them all in the basement of the hospital.
Now I know!

Brendan's efforts are also highlighted in THIS ARTICLE in the local paper.

Please mark your calendars ~

Collection Dates

September 19th - October 1st

For your convenience, if you live in the area the addresses of the locations accepting donations throughout that collection period are as follows ~

La Grange Public Library
(Click on "comments" below for hours - thank you Bridget!)
10 West Cossitt Avenue
La Grange

Park District of La Grange
536 East Avenue
La Grange

St John of the Cross Parish Center
5005 Wolf Road
Western Springs

St Cletus
700 W 55th Street
La Grange

If you live outside of our area and want to participate, you can mail your donation to me at ~

Mary Potts
825 South Stone Avenue
La Grange, IL 60525

(Monetary donations to The Treasure Chest Foundation are gratefully accepted as well.)

Thank you in advance for your generosity

to a cause that will help make the lives

of pediatric cancer patients a little brighter.

And, a very special thank you to Brendan

for choosing to do this service project.

You will make one fine Eagle Scout!

Now, With Added Meaning

Perhaps you've noticed that I've been changing my blog's sidebar around a bit. Among other things, I've added Tagore's "My Song", which is the passage we chose and had printed on the back of Erin's mass cards. We thought the words conveyed the sense of her ongoing presence in such a beautiful way.

I've also added the ribbon graphic to highlight the fact that

September is

Childhood Cancer Awareness Month.

It's an understatement to say that I'm now very much drawn to cancer-related issues. Inserting this graphic made me think about how the significance of ribbons and the meanings & characteristics associated with colors now impact me a little differently.

Several years ago (which actually seems more like a lifetime ago at the moment) when I coached junior high girls volleyball, I sometimes had to get a little creative to motivate those young athletes whose attention could wander off to things unrelated to the task at hand. Funny how that happens with adolescent girls! To fire them up a bit, I decided to give them ribbons to tie on their shoes when they won a match. Each opposing team in our league was represented by a ribbon that corresponded with that team's school colors.

Those colored ribbons symbolized

Teamwork, Motivation, Winning,

Success After Hard Work, Goals Attained, Fun!

When the season began, I gave each player a red ribbon with white polka dots to signify the school colors of St. Cletus, and I tied one to my spiral coaching notebook. I dug out those spirals, with the red/white ribbons still attached, along with scrapbooks that contain photos and notes I'd received from players & parents throughout the years.

I sat on the floor amidst the piles, as waves of wonderful memories washed over me while I relived the days spent with sweaty, happy, pony-tailed girls in SO many gyms in SO many places for SO many years... I LOVED coaching.

OK, Cletus & IC folks, here it is ~

the page from the best match ever held in The Barn!

(clicking on the image will enlarge it)

Yes, I know: 14-25(ick!) 25-23 and 21-25 in favor of IC ;(

The girls also loved to show off their "artistic abilities" and I always let them decorate my notebooks with their graffiti.

I have some real treasures!

Here's a brief stroll down memory lane.

Perhaps you recognize some of these young ladies!

1996 ~ SPL League Champions

1998 ~ Victory at IHM Tournament

2001 ~ Hodgkins Tournament Champs

2004 ~ Honoring NBS in the Battle Zone

I carried the theme of color a bit further with the team pictured in the orange victory T-shirts above. (Erin, who was 10 at the time, was my assistant coach and claimed part-ownership of that big trophy!) On Sports Awards Night during their 8th grade year, I gave my players printed cards on which I'd explained the symbolic meaning of some colors. I found it so interesting to look at the descriptions and character traits of each color, and then think of the personalities of my girls to see which ones they resembled most. The majority were a combination of the spectrum, but some really had strong tendencies toward one in particular. It was that secret blend that always made us a spectacular TEAM!

This is what I gave them. Is there a specific color that most accurately describes you, or are you a mixture of hues?

The Universal Meaning of Colors

Red is a strong color

that stands for force and high energy.

It is a color of leadership and the color of the pioneer.

Red makes the first move.

Blue shows devotion and steady progress.

It is the color of creative energy and quiet wisdom.

Blue cares about the welfare of others

and shows compassion and great inner strength.

Green is the color of nature.

It is a strong energy and attracts a lot of positive power.

It is the shade of peace and harmony,

the color of honesty and truth.

Yellow is friendly and cheerful.

It shows action and warmth,

and is also the color of intelligence.

Yellow is the shade of social energy.

It indicates cooperation from others

and the desire to make things better.

Black is the color of strong drive and purpose.

It represents formality and great dignity of self.

Purple represents the energy of the quest.

It is the color of self-confidence and ego,

the color of ambition.

Orange is a sun color and is full of energy.

It shows things that move fast

and that have great strength of purpose.

It is not a color of material wealth,

but rather a wealth of the mind and knowledge.

Orange represents the energy

that enjoys giving to others.

Brown is the color of the earth

and represents the practical side of things.

Success comes by steady work.

It does not show energy that soars,

but rather a secure and slower force.

Brown indicates things that work hard.

It is the color of endurance.

White is the strongest and most pure of all the colors.

It is felt to be the color of

perfection and pure light energy.

It represents good and fair judgement

and shows the path of the spirit.

This flowing white ribbon was tied to the tree in front of our home just after Erin passed away last December. If you've not been reading my blog, perhaps you'd appreciate more photos and the story detailing this beautiful gesture from the people in our neighborhood HERE.

While colored ribbons still represent the attributes listed above

with all the memories I hold dear,

they've now also become symbolic of

Remembrance, Honor, Death, Survival, Awareness,

Courage, Hope and Love

Gold ~ Childhood Cancer
Yellow ~ Sarcoma/Bone/Bladder Cancer
Pink ~ Breast Cancer
Teal ~ Ovarian Cancer
Clear ~ Lung Cancer
Purple ~ Pancreatic Cancer
Orange ~ Leukemia
Emerald Green ~ Liver Cancer
Periwinkle Blue ~ Esophageal & Stomach Cancer
Black ~ Melanoma
Dark Blue ~ Colon Cancer
Burgundy ~ Multiple Myeloma
Gray ~ Brain Cancer
Blue ~ Prostate Cancer
Teal/White ~ Cervical Cancer
Burgundy/Ivory ~ Head & Neck Cancer
Lime ~ Lymphoma
Peach ~ Uterine Cancer
Kelly Green ~ Kidney Cancer
Teal/Pink/Blue ~ Thyroid Cancer
Lavender ~ All Cancers

Please stop for a moment and think about how cancer has affected your life ~ through your own diagnosis or through a loved one's experience.

Kind of takes your breath away, doesn't it?