When you are sorrowful look again in your heart,
and you shall see that in truth you are weeping for that which has been your delight.

~ Kahlil Gibran, from"The Prophet"

Tuesday, March 30, 2010

Finding the Words

On Sunday, Dave and I treated ourselves to the Chicago production of Broadway's Billy Elliot. Oh my gosh! If you have a chance - go see it!

The story takes place in the UK, beginning in 1984, when the British National Union of Mineworkers are striking as they attempt to save the coal industry from closure due to political opposition. (Margaret Thatcher is not very popular!) Billy is the son of one of the striking mineworkers; a member of one of the families struggling to survive the hardships of the time. His dad wants him to take up boxing, but Billy has no interest. Instead, by chance, he happens upon a ballet class held in the same sports center as the boxing lesson. The teacher coaxes him to dance a bit, and after initial hesitation Billy tries and, little by little, finds he likes it. The instructor's critical eye spots potential and she encourages him to stick around. After observing more, she decides he is truly gifted and eventually convinces him to audition for the Royal Ballet. You can imagine how well this goes over when his father finds out what he has been doing with all his time, assuming he was at his boxing classes! Let's just say the news was not well received.

This is a truly stirring account of a boy who has the guts it takes to follow his dream, with hopes of eventually escaping his pre-destined future as a coal miner. He is further motivated by a treasured letter from his "mum" who died when he was younger, in which she says to him:
In everything you do
Always be yourself, Billy
And you always will be true

There were many moving scenes, with the distress of the mineworkers highlighted as the strike takes a devastating toll on their lives. The ballet instructor was humorous and dedicated. And the parts where Billy is reading his mother's letter, with her (in memory) filling in words as he cannot finish the sentences (yes, I was using my kleenex during these scenes), permeate with deep emotion, as do the scenes where he expresses his rage and frustration about the many conflicts he faces.

The dancing was spectacular, especially that of the 13-year-old boy who played the part of Billy. The child's talent is extraordinary!

But the part of the play that especially moved me was when Billy, after auditioning at the Royal Ballet, is asked the thought-to-be-simple question "Why do you like to dance?" by the judges. Should be an easy answer, right?
He stutters and stammers, unable to find the right words. And then the music begins, and his explanation is revealed in dance and song.
I can't really explain it, I haven't got the words
It's a feeling that you can't control
I suppose it's like forgetting, losing who you are
And at the same time something makes you whole

It's like that there's a music, playing in your ear
And I'm listening, and I'm listening, and then I disappear

And then I feel a change, like a fire deep inside
Something bursting me wide open, impossible to hide
And suddenly I'm flying, flying like a bird
Like Electricity, electricity
Sparks inside of me, and I'm free, I'm free

It's a bit like being angry; it's a bit like being scared
Confused and all mixed up and mad as hell
It's like when you've been crying
And you're empty and you're full
I don't know what it is, it's hard to tell

It's like that there's some music, playing in your ear
But the music is impossible, impossible to hear

But then I feel it move me
Like a burning deep inside
Something bursting me wide open
Impossible to hide
And suddenly I'm flying
Flying like a bird
Like Electricity, electricity
Sparks inside of me
And I'm free, I'm free

Billy is unable to find the words for PASSION. How do you adequately define your PASSION? While watching this magnificent dance scene and listing to the words of the song, I was caught in the emotion of how fortunate anyone who has a deep-seated love for SOMETHING - ANYTHING, is.

When you LOVE something - whether it be dance, cooking, your work, playing volleyball, gardening, being a mother, coaching, photography - so much it defies a name, and you can only FEEL it, SENSE it with your inner being -

Monday, March 29, 2010

In Your Easter Bonnet

Ladies - just wondering if you've chosen your Easter Bonnets yet?

Erin is modeling a lovely pink style here!

If you're lucky, you may be able to find it at one of the Haute Couture Design Houses.

The mayor's wife seems to favor PINK!

We love you Conrad
Oh yes we do
We love you Conrad
And will be true!
When you're not near us
We're blue!
Oh, Conrad, we love you...

Friday, March 26, 2010

To Wait is Often Harder

Teach us, O Lord, the disciplines of patience,
for to wait is often harder than to work.

-Peter Marshall

Those of you who know me can understand my affinity for the above plea. I'm a girl who likes a plan, a task, a mission. I'm a doer and a juggler. I like lots of plates in the air.

Encouraging, understanding and very-wise friends advise me to:
Stop talking so you can hear your inner voice. Take cues from Erin who will guide you. Listen for the Holy Spirit. Be gentle with yourself. It's too soon. Rest. You don't have to do anything now. WAIT.

That genteel inner voice, that I must sometimes strain to hear, is often drowned out by the competition between the Sane Mary and the Crazy Mary who also reside in my head. It can be a very crowded house, with each dweller battling for top billing.

I know and agree that I need time to rest, recover and process everything, but it is HARD FOR ME to do that, as one who is so accustomed to being active, involved and with direction. For the first time in thirty years I don't have a job. Erin has moved to a place of peace, my other children have matured into independent, self-sufficient individuals, and I left my place of employment to care for Erin. Sometimes there appear to be signs, then they're snatched. Where in heaven's name do I go from here, to fulfill my self-proclaimed need to live a purposeful existence based on what I've just been through?

As many of our contemporaries experience the "empty nest" stage, Dave and I kick ours up exponentially because our college-aged child who has recently left home is NOT COMING BACK for spring break! Parents, please try that shoe on when you get impatient with your kids and utter the words, I can't wait until (insert name) goes back to school because she's driving me crazy! We are living an exaggerated version of that phase of every parent's life, as we add a block to the already leaning tower of empty-nest stage, by topping it with child-gone-forever syndrome.

Throughout the three years, I developed a relationship with Erin that most mothers don't have with their daughters. Obviously, I would never have chosen this avenue to foster this kinship, but thankfully, realizing how special it truly was, I absolutely cherished every minute of it.

We were forced to spend an inordinate amount of time together, due to hospital stays, home schooling, hours spent in the car driving to and from treatments, waiting in rooms for appointments and scans... TOGETHER, we stared down the lethal adversary. It was typically just the two of us. Dave had to go to work each day - to take care of the minor (hah) details of bills and insurance coverage. Chris, Sarah and Matt are all self-reliant with living expenses of their own, and had to work as well. So I was the one with Erin day to day. I WANTED it to be me, and by virtue of it BEING me the majority of the time, I EXPERIENCED IT ALL. So, experiencing it ALL was my LIFE. In situations where a child is sick, it is most often the mother who assumes the role of primary care-giver. That is not to say the rest of the family wasn't involved. They most definitely were and as previously mentioned, each member maintained their exclusive relationship with Erin.

I found it interesting that, as time went on, Erin always referred to situations by saying "we" as opposed to "I":
WE have to go for chemo. WE have labs on Tuesday. WE have to have a transfusion on Friday after school...
And now our dynamic duo IS no more.
The house is silent! I want to hear her voice. Be patient. WAIT.

Now that the heads-on assault has quieted, I feel the bombardment of the raining shrapnel. Without the day-to-day focus I had when Erin was here, the force of the fall-out often fells me. I had an important, emotionally engrossing job; take care of my daughter, no matter what the circumstance required. It urged me forward each day, especially during the very difficult portions of those three years when I just put my head down and kept going because if I stopped to REALLY THINK about what was happening to her - due either to the insidious cancer or the noxious treatment, take your pick - I would have been frozen with the inability to get up and go on. The war is over, and I'm pummeled with aftershocks as experiences flash back in random and often unexpected bursts of for-a-time forgotten or buried memories that resurface now in the deafening silence.
Breathe Crazy Mary. Breathe.

Sometimes I HATE the phrase (insert name of the person who died - in this case ERIN) would WANT you to be happy. I KNOW THAT!!
But sometimes she just doesn't get what she wants because she's not here!!

I have to believe she went straight into the waiting arms of my mother in heaven, and that's a good thing, but I'm left here on this earth to sludge through this mucky path without a roadmap. I want my mother and I want my daughter! I'm a generational bridge, with both of my moorings uprooted. I'm flapping about, blindly groping at times, and learning to reach upward toward the heavens with both arms now instead of just one to hold their hands. Eventually I'll gain my balance but for now, my equilibrium is way off. My mother died five years ago at the impressive age of 92. Erin died when she was only 18. At the age of 51, I STILL want my mother when things frighten me. She was one of the finest examples of the essence of patience.
I dig deep to remember all she taught me.
Stop talking Mary. Listen to your mother.

This is not the life-path I had in mind. I was in no way prepared for the challenge of a child with cancer, let alone a child who was not going to survive cancer. Now I'm given the task of figuring out how to live without that child who was snatched from my grasp. I didn't LOSE her, but that's subject for another post. I'm certain no parent is equipped with these abilities. So, I've worked hard to face the music, the challenges, and little by little I know I've become stronger, bolder, DEEPLY empathetic toward others in our position and, for the sake of survival, I've developed the ability to become blissfully numb when the situation demands it.

I truly understand the necessity of this time in my life, knowing I ABSOLUTELY deserve it after all I've been through. I vow to not shortchange myself. I will work hard to LISTEN and I will say this prayer over and over, as I chart the map of my future, seeking my true north.

Teach ME, O Lord, the disciplines of patience, for to wait is often harder than to work.

Wednesday, March 24, 2010

Enter, the NEW Setter and Erin's other FAMILY

This is a picture of ERIN'S TEAM, taken during the summer of 2006.
This was her other FAMILY. This was Erin's PASSION.

#8 is in the middle of the pack! "Hey Colleen and Melvin! LOOK!"

Erin had always set for the top team. #8 was on a mission to play in college. When the cancer began to rear its ugly head, one of her symptoms was a loss of appetite which was SO uncharacteristic of her. She could down a fat cheeseburger with the best of them! We initially thought she couldn't eat due to anxiety over the "diagnosis" of patellar tendonitis & an atrophied quad muscle, and overwhelming concern this would keep her from being placed on the top club team during the crucial college recruiting year. We thought she was so distressed she couldn't eat. WRONG!
The rest is detailed in previous blog posts.

Enter, the new setter, Kristin Hoffman. Pardon me? Who is SHE? Who is this girl who has just transferred in from another club and is going to play MY daughter's position on the court?
Kristin was placed in an unenviable spot - replace the girl with cancer who has been playing competitively with this club since she was in 3rd grade - don't worry, no pressure!

In the photo below, Kristin is all the way to the right in the front row. Erin is standing in the center of the back row, just one week after her first chemo treatment and 35 pounds less than she weighed before she got sick.

This Power League date was the first time I went to see the new setter play, and the first time I was to see Erin's team play without her. I was so nervous about watching, concerned about how I would feel seeing Kristin in Erin's place on the court. While truly understanding the pressure she was under, I wanted to be open-minded and considerate. Obviously, this girl chosen to run the team was qualified or she wouldn't have been placed there, and naturally, due to Erin's circumstances, the position had to be filled.

Remember however, that at this stage I was the mother who was very busy setting up residence in the previously-mentioned nuthouse!

I took quite a few deep breaths that day and I did watch - carefully. I watched on subsequent days, and little by little I became acquainted with this amazingly talented, gifted athlete who eventually became one of Erin's dearest friends. She was gracious and respectful from the start, always referring to the group as "Erin's Team".

Kristin was a member of Erin's other FAMILY, the group that enfolded her, remaining steadfast and supportive, at her side throughout the three years.

On more than one occasion, Kristin has told me she feels that somehow she was destined to meet Erin, and after witnessing the events of the recent years unfold, I truly believe that to be true. I have a difficult time imagining anyone other than Kristin in this role.

Please click on Kristin Hoffman to read an article from the NIU website (where she earned her scholarship and is the starting setter) about her special relationship with Erin. At the bottom of the article it says "visit her Relay for Life homepage" and you may click there to read more about this incredible young lady and all she is doing for Erin.

The majority of the girls from Erin's team have continued on to play college volleyball.

The half-empty side of me grieves for what Erin could never have, even if she had survived the cancer.

The HALF-FULL side reminds me that we were blessed to experience the years of joy due to volleyball and everything that accompanied it - the teamwork, a healthy lifestyle, a strong body, a never-ending determination, a focused work ethic, FUN times, and spectacular FRIENDS.

Now, when the girls email or text, and especially when they come to visit, I feel as though I'm still in touch with a very special piece of Erin that is offered to me, available only through them. I cherish the considerate attention I receive in spite of their busy lives.

And so, to ALL of Erin's Lions and First Alliance and High Performance teammates -

Keep playing hard, with confidence and determination.

Hit the floor.
Put up the perfect set.
Stuff your opponent.
Pound the ball.

Remember #8


"Have Fun"!

Tuesday, March 23, 2010

For Childhood Cancer Research!

Sunday's St. Baldrick's Fundraiser at Kenny's was a HUGE success! Nearly $12,000 was raised by the participating shavees who had solicited pledges prior to the event. A split-the-pot was held at the bar that day, which raised several hundred dollars, adding to the total generous sum. All the money will go directly into childhood cancer research.
A big thanks to Tracy Kenny-Scalise for organizing this awesome event!

Caught in the emotion of it all, Dave decided to get involved as well. Doesn't that poster behind him speak volumes?

Then Chris decided to join in.

Looking good you two!

It was a very special afternoon, spent raising necessary funds for research and remembering those whose lives have been impacted by this horrible disease.

Here's looking at you Erin!

Sunday, March 21, 2010

Today, Three Years Ago

On March 21, 2007 a hip/partial femur replacement was performed on Erin as part of the recommended treatment protocol set by the Children's Oncology Group.

When the results of the biopsy came back during the week of diagnosis in December, Dave and I were told this radical surgery, a limb-salvage procedure, was necessary to ensure clean margins; the removal of all tissue affected by disease. At the time of the diagnosis I was distraught and overwhelmed, so all of these words didn't fully sink in. We had heard the word cancer for the first time five days earlier and we were now meeting with the orthopedic surgeon who was talking about his part in the juggling act of oncology specialists who would take part in Erin's "treatment plan".

I know I was still shell-shocked from the barrage of tests, scans and biopsies, and in a frenzy with the highly-dreaded chemo drugs looming on the horizon of the following week, scheduled to begin two days after Christmas. CHRISTMAS, are you kidding me? I think we're all familiar with the expression like a deer in the headlights. In a bizarrely detached way, I nodded my way through those first weeks: Go here for this test - "Ok". Now go for this scan - "Ok". Now we'll surgically implant a port in her chest. Don't worry it's a great thing - "A what?! Ok". She'll start chemo next week - "Ok". Now go to... - "Ok". I think you get the picture.
In order to have any semblance of sanity, I found I needed to compartmentalize information, or my brain exploded. It was too overwhelming for me to process everything at once. Looking back, I know I was in shock for the first few months; barely able to eat, sleep or breathe. (Remember, the house was torn apart too.) I somehow functioned. I'm certain it was simply because I LOVED Erin, and that innate sense propelled me forward. And so, the thoughts of surgery were forced to the back burner as we began to fall into the routine of in-patient chemotherapy and home schooling.

After the first couple of sessions, we began to breathe a collective small sigh of relief as we witnessed Erin's ability to tolerate those drugs, AND she began to feel so much better; the tumor was shrinking, the chemo didn't make her sick, her appetite returned, she gained some weight, her energy was rebounding. In effect, Erin was becoming ERIN again, minus the small detail of her gorgeous long hair, after at first being on a previously-unexplained absence, and then receiving the life-altering cancer diagnosis. She was attending volleyball practices and tournaments to be with her teammates, meeting with teachers, even going to the gym to exercise a bit. She felt really good. Inwardly, I was still in the nuthouse!

In February, we met again with the orthopedic surgeon who confirmed his initial recommendations of this procedure as the best possible chance to completely rid her body of the monster that grew within her leg. At his insistence, we sought opinions from specialists in orthopedic oncology at other institutions and they concurred.

We all logically understood the necessity of this surgery, in combination with the 14 cycles of chemo, and also the 30 fractions of post-surgical radiation to "clean up" any remains of cancer cells in her leg, to give her the highest odds of beating the disease. I use the word logically very emphatically.
The brutality of the procedure itself, what they were actually going to do to MY daughter during this 6-hour procedure, made me physically ill. Surgery is an atrocious assault to the exquisite beauty and integrity of the body.
And then, there was the impact it would have on her life.

From a young age, while watching Sarah work so hard to fulfill her dream and go on to UWM with her scholarship, Erin determined it was her mission to follow in her beloved big sister's footsteps and earn her own scholarship to a Division One school.
Volleyball helped define Erin's life, who she was, the path she was on. Some people play a sport because it's fun, they're athletic, it's good exercise, they love being part of a team... all good reasons. Others, like Erin who also play for the afore-mentioned reasons, take it up a notch or two and it is a PASSION, like writing, acting, or dance is for those select individuals.
No, she wouldn't play volleyball later in life. It would not be her career. Yes, she would get a college degree in whatever field she chose and volleyball would no longer define her life as it did at that time. But at that period in her life, that surgery meant the end of Erin's current life as she knew it. Tough when you're 15, and especially since the reason it has ended is because you have CANCER and you must process that fact as well! That's a bigger plate than most will be forced to eat from their whole life. Hence, the emphasis on logic. Yes, we completely understood the surgery to be a necessity to cure the cancer and that was WHAT MATTERED MOST, but Erin/we had to grieve the loss of her passion as well.

The agony I felt about the life-altering consequences of this surgery, coupled with the brutality and risks of the procedure itself rendered me incapable of speaking about the details to anyone. Only our immediate family knew until a couple of days prior. Saying the words aloud made it too real, too painful. It meant it was really happening. All were told the chemo was shrinking the tumor and the remaining necrotic tissue would be removed during the procedure - truth but no details. I just couldn't go there, and I was incredulous when some expected more information from me.

Erin didn't care to speak much about it either. She openly cried only a couple of times, and then stoically moved forward with an IT IS WHAT IT IS! understanding that astounds me to this day as I type these words. I know it affected her on a very personal level that she didn't allow herself to vocalize very often, preferring instead to process it privately. In many ways, she accepted nearly everything so much better than I did because she knew she had no control.

The day before her surgery she played football with Chris in the street in front of the house. This was a common game for them and Chris, awesome big brother and football coach extraordinaire, had her running pass routes - chairs, slants, outs, digs - for those of you who know receiver lingo, and yelling to her, as she caught with skilled hands, "If only you were a boy!!!"
She'd banter in response, "If only you could throw like one!"

Riveted to the sight that day, with tears streaming down my face, I knew it was the last time I'd ever see her RUN and JUMP, unencumbered by the effects of surgery. (After she recovered, they often played together in the street. She jogged slowly and hopped up off her left leg to catch a pass. Two days before she died, they threw a ball across the living room together.) I soaked in every bit of it from the upstairs window and resisted the urge run out and take photos of them because I didn't want to land in a heap of blubbering emotion in front of her. It would have been received with fierce eye-rolling on Erin's part! Moments such as those can never be captured accurately in still-photography anyway. You must simply be present with them. The image is etched in my mind forever.

One of my favorite sympathy cards, from a former neighbor, stated, "I will always remember a beautiful, healthy, athletic girl playing in the street - and doing better than the boys." Oh, how Erin would have LOVED that compliment.

The surgery went smoothly. I was frantic during the six-hour procedure. Her first words afterward in recovery were, Hi mom. See, I told you he'd do a good job. She was in ICU for one night as a matter of routine, and home three days after that enjoying steaks from the grill in celebration. She was on crutches for three months to ensure the muscles adhered to the implanted rod, and after that three-month period she began intense physical therapy several times a week, that continued for months. Throughout that time, she completed the remainder of the chemo cycles, had radiation, finished her sophomore year, coached, got her driver's license and began her junior year of high school, along with many other things - living her new normal.

Life came to a screeching halt again three months after the end of that protocol when she relapsed in March of 2008. It seemed so unbelievably cruel. STILL DOES! In spite of doing everything right, in spite of the sacrifice of her life's passion, the cancer came back.

Saturday, March 20, 2010

How Does Your Garden Grow?

When Erin was in first grade, her class performed a little spring production entitled "How Does Your Garden Grow?"
She was chosen to be one of the farmers, and is in the middle of the back row in this photo - with the yellow t-shirt.

Below, she and Caitlin are tending to some of the lovely flowers.
I recognize most of her classmates in both pictures. Anyone want to identify themselves? Come on, don't be shy!

It's the first day of SPRING (Hard to tell here in the Midwest today - knock it off Erin!), so it's time to make plans for your garden.

Celebrate the day and click I LOVE SPRING!
You'll see a black screen.
Move your cursor around, click and plant some flowers.
(Planting a special pink rose today for Deb...March 20, 1986.)

"Have Fun!"

Thursday, March 18, 2010

Of Ribbons, Roses and Unexpected Responses

Each day of the three months, since December 18th when Erin passed away, has brought an overwhelming sense of disequilibrium. The world has traveled its dictated orbit; time marching without missing a beat. The dynamic change in seasons is occurring, with winter's harshness fading and spring budding on the horizon.
Somewhere in the earth's natural rhythm there should be a blip, a hesitance, because Erin has been gone for three months! Shouldn't this disturb something? How I've longed to hear the sound of her voice. It's wrong...

On December 19th, we awakened to the sight of red roses a friend had strewn about our front yard; their rich red petals, thorny stems and brilliant green leaves stippling the white blanket of snow that covered the ground, creating a palpable and vivid contrast.

Leafless trees, bedecked with flowing white ribbons, lined the street, a gesture of recognition and respect, a gift from thoughtful neighbors whose idea was carried forth, down the blocks to the school and church grounds.
(Click on the image to the left to enlarge and see the striking contrast of the red rose in the background snow.)

Each tree on the property's perimeter rose in silent reverence, with white streamers fluttering in the chilly air, standing ready as we processed to church; these pines, soldiers at rapt attention.

The snow fell gently in the morning on December 18th, an icy handful carried from the back yard by Chris and placed in Erin's hand as we surrounded her, waiting. It stopped for a time as morning hours waned to late afternoon. It commenced again, almost cautiously, soon after Erin peacefully left this earth at 4:40pm, and then, gaining momentum through the night and continuing in earnest throughout the next several days, it seemed to announce her ongoing presence amongst us with authority.

An apt observation of Erin, the words written in a card expressing sympathy - "One thing that struck me was Erin's love of snowflakes and winter. It shows so much of her character and strength. Summer is easy to love, winter is only for the brave. The colors are gone, it is gray outside, but a snowflake is a gentle reminder of God's majesty, each one unique and special like Erin." - thank you, such poignant words.

In the darkness this past Tuesday evening, Dave and I walked in silence to each tree on the block, snipped the ribbons from the trunks and discarded them. The brilliant whiteness had faded. They'd weathered the winter and had become tattered, gray, tired... bedraggled. It was time for them to be removed.
Be strong. Walk forward. When there is no wind, row!

Yesterday afternoon while hiking the woods with Keenan, I saw the fresh white of spring snowdrops pushing through the soil that had slept, barren for months.
The white of purity. New growth. Renewal.

The forest path has an offshoot lane, taking one to the street that leads to Bronswood, where Erin is buried. Keenan and I took that turn yesterday, and as we reached the road winding into the old cemetery, lined with still-leafless oaks, my soul filled with a deep sense of longing, missing, yearning.

Just exactly as we climbed the hill from the road to her resting place, my phone rang. I typically don't even bring my phone let alone answer it when I'm there, but I pulled it out of my pocket and saw the caller was a kindred spirit, a true soul mate, a mother whose 18-year-old daughter is currently in the head-to-head with her lethal opponent. She was calling to tell me their roller coaster had taken the plunge; painful news, fear, disappointment, uncertainty, flailing... Oh God, my heart ached. I could feel every shred of anguish for them, with them.

When our conversation ended, I sat under the bough of the pine that stretches over Erin, on the damp earth, spongy from the thaw of snow. Heaving, gulping sobs shook me to the core. I cried for my friend. I cried for her beautiful young daughter. I cried for Erin and I cried for myself. Sick, just sick about the ravages, the havoc of this atrocious disease, this cancer.

Finally I was able to take a breath. Slowly I allowed my heart to settle.
My body soaked in the warmth of the sun. I saw the brilliance of the clear blue sky. I heard the harmony of birds chirping and wind chimes ringing through the trees. I felt the soft breeze on my face.
Keenan's body, always close, his head gently resting on my leg, panted with steady rhythm.

Inhale. Exhale. Wait. Feel. Sense.

And I listened very carefully and I heard Erin's voice, clear as a bell, saying in her ever-straightforward manner, I'm FINE mom!

No more scans.
No more treatment.
No more surgeries.
No more pain.
No more physical wreckage.

Wednesday, March 17, 2010

Erin Go Bragh

May the light of your soul guide you.
May the light of your soul bless the work that you do
with the secret love and warmth of your heart.
May you see in what you do the beauty of your own soul.
May the sacredness of your work bring healing, light
and renewal to those who work with you
and to those who see and receive your work.
May your work never weary you.
May it release within you wellsprings of
refreshment, inspiration and excitement.
May you be present in what you do.
May you never become lost in bland absences.
May the day never burden.
May dawn find you awake and alert,
approaching your new day with dreams, possibilities and promises.
May evening find you gracious and fulfilled.
May you go into the night blessed, sheltered and protected.
May your soul calm, console and renew you.

-John O'Donohue
(© John O’Donohue. All rights reserved.)

Peace to all on St. Patrick's Day from this Irish lass!

Monday, March 15, 2010

Sarah and Some Volleyball Memories

Dave and I were in Milwaukee over the weekend visiting Sarah, which naturally prompted a stroll down memory lane into the land of volleyball. The reason Sarah lives in Milwaukee is because she attended college there and then never came home! She has become a Packer fan and a Brewer fan - Geez!

This post includes a random sample of pictures and I'm hoping some of her former teammates might enjoy seeing them. I certainly had a great time looking through dozens of photos of eleven years of volleyball!

Sarah was the first volleyball player in our family (actually I was, but we won't go there yet!), beginning her career in 6th grade at St. Cletus. I coached this very successful team throughout 6th, 7th and 8th grades. This photo was taken after our victory in the Hodgkins Tournament in 1996, Sarah's 8th grade year.

She attended Lyons Township and was a four-year starter on the varsity team as an outside hitter, setting the school's kill record, an accomplishment that still stands in the IHSA statistic books. Unfortunately, the team never made the trip downstate.

Meghan and Sarah began playing together in 6th grade and continued as teammates through their senior year in high school, playing during both the school and club seasons. Hours of time together on the court made them an intimidating duo. Sensing one another's moves, they developed into an incredibly dynamic force against opponents.

Pass to Keck. Set to Potts. LOOK OUT!

Sarah's club team qualified for Junior Olympic Nationals every year, and we traveled to the tournament's host city each June.
Remember the long red spandex and baggy shirts? WOW, what a look!

The volleyball schedule typically dictated our summer vacation destination, with trips to Minneapolis, Tampa, San Jose, Denver, Dallas, New Orleans...Looking back on those years, I see them as some of our happiest.

This photo was taken in Dallas, the year her Lions 16s Team won third place at Nationals, and Sarah was selected to the all-tournament team.

By working incredibly hard throughout high school, she earned a scholarship to the University of Wisconsin Milwaukee where she played all four years, with the exception of several very frustrating weeks of her senior year when she was sidelined with a herniated disk.

We are so very proud of all of her accomplishments, with her love of the sport so obvious when she set foot on the court, as she played with drive, skill and purpose. She possessed one gun-of-an-arm! It was Sarah's ability and early success that really got all of us hooked on the sport.

Sarah was Erin's idol, and Erin aspired to follow in her foot steps. Through the years, people often asked me who the better player was, and I absolutely bristled each time I was asked that question! Each of the girls was gifted with natural ability and incomparable qualities that made them unique players. Sarah was a hitter. Erin was a setter. Both were passionate, hard-working and very competitive, dedicated TEAM players.

This photo of Erin was taken when she was nine years old at one of Sarah's freshman matches at UWM. Each year, during pre-season, the coach hosted a party during which introductions were made to break the ice and get to know all the new players and families. When it was Erin's turn, she said, "I'm Erin Potts, Sarah's sister. I'm going to be better than Sarah! I'm going to play for UWM too."
The coach accepted her verbal commitment!

Sunday, March 14, 2010

Please Save The Date!

We will be hosting a blood drive at St. Cletus Parish in memory of Erin on Saturday, May 15.

Throughout Erin's three years of treatment, she received numerous transfusions because of compromised blood counts as a result of chemotherapy and radiation, a common occurrence in cancer patients.

Her birthday is May 14, and we would like to celebrate by helping others in need.
Did you know only 5% of the national population donates blood?

Please mark your calendars and spread the word. More specific information will be coming.

With sincere thanks,
Mary, Dave, Chris, Sarah and Matt

Thursday, March 11, 2010

Focus on the Fine

Erin and I began a Journal of Gratitude on March 1, 2008. She was in the hospital recovering from the lung surgery, frustrated and very uncomfortable due to the chest tubes that couldn't be removed as quickly as she expected and therefore unable to get HOME where she wanted to be. I thought of a journal as an avenue for both of us to try to shift focus away from the discouraging things that were taking front-seat attention, and to help deal with the bigger picture; the shocking fact that the cancer had returned so swiftly. Now, in retrospect, I clearly see it as the first example of taking charge of something within our capability, because we had just so painfully learned we had absolutely NO control over what the cancer was going to eventually do.

Every evening before bedtime we took turns writing. Together we decided to highlight a minimum of three things each day for which we were thankful, things that made us laugh, or things that made us feel good. Entries were not full sentences; just random thoughts, snippets of ideas, fragments of the day. Some of Erin's initial entries from 2008:

March 1 - Sat in the chair for 1/2 hour today. Ginger ale tasted good.

March 6 - My bedroom was decorated by Margy, Ali & Kristin (P) when I got home.

March 9 - Walked up & down the block for the first time. Facebook messages with Kristin (H).

We sat together each and every night (with the exception of the couple of weeks she lived in the dorm, when she took a journal to school, and I continued writing in our book at home), from March 1, 2008 until Thursday, November 26, 2009 - Thanksgiving Day, filling three books with literally hundreds of gifts-of-the-day. Yes, there were some days when it was so difficult to see anything good and yet we were successful on even the worst days, understanding that on those days the challenge of SEEKING the gifts was more essential than ever.

Focusing on the positives became a means of attempting to offset a portion of the worries listed in my previous blog entry. I went to the land of "what if" so much of the time. A wise one often preached, "Don't let tomorrow steal today." - a great concept if you can pull it off amidst the chaos. By working very hard I finally learned how accurate that was. Worry truly is an enormous energy drainer. The theory was, yes, things were eventually going to get bad, but RIGHT NOW they're not bad and TODAY everything is fine. FOCUS ON THE FINE. Many of my worries never came to fruition. Yes, a number of the big ones did, the WORST one did, but a HUGE PORTION of the rest didn't. For example, she NEVER had one infection or a cold in spite of all the dreaded germs floating about her often-neutropenic little self. She never fell down those stairs at school. She fell a couple of other places, but she was fine. And so the journal became one of the tools encouraging concentration on the good things each day. The goal was to put the positive spin on anything and everything we could. We mostly succeeded.

And Erin didn't worry about things the way I did. I aspired to be the lightning rod, absorbing as many of the" hits" as I could so she didn't have to, and because of that I went into "what if" mode so I could try to fix every situation before she arrived there. The joke was on me! I couldn't fix a damn thing having to do with the progression of the disease itself, and I finally learned to concentrate on what I actually could control. And so ultimately Erin was right when saying, "Stop worrying. I'm fine." She understood, so much better than I, that she couldn't control it and so she lived for the day. As I spun in circles of rumination frenzy she often calmed my fears, simply with her confident presence. It is what it is mom! I'll deal with it when I have to.
The uncomplicated wisdom and acceptance ability of youth resonates with astounding accuracy.

Erin's final journal entry on Thanksgiving included:

Being able to eat all of the delish food today.
Being able to get around easier, even though I had pain.
Having the best Thanksgiving with everyone here.

The next day, when we had to rush Erin to the emergency room, the journal was not packed. It was left at home, abandoned. We were exhausted, in shock and finally defeated. The next three weeks were spent in a fog of tending to the daily tasks at hand; the recording of blessings forgotten.

On Christmas Eve, I began a journal of my own. The intention is the same - focus on the blessings amidst the things (SHE'S NOT COMING BACK) I can't control. I began the journal by reflecting on those three undocumented weeks and decided to write as many of those things out as I could remember. I easily filled many pages with specific events and very personal experiences. Those weeks were intensely beautiful in that I saw the supreme courage and grace of a daughter who called the shots until the final moment, and NEVER, EVER gave in to the attempted authority of the cancer.

I can confidently say that as I randomly listed the positives of those three weeks, she would have agreed with so many of mine. I regret not having her exact thoughts and words, and yet know the energy to actually write just wasn't a possibility at the time. We verbalized many of them to one another during those weeks.
Just a FEW of those things are:

The compassionate care of the doctors and nurses, who did everything within their power to help us through the days.
The community that loves and supports us.
Erin continued to enjoy many of her favorite foods - she loved to eat!
Erin never lost the use of her right arm/hand, and therefore could feed herself and type on the computer, allowing her to maintain dignity and some control.
Erin and Chris threw a ball across the livingroom and bantered in their usual fashion just two days before she died.
Kristin was the last friend to see Erin on Thursday night, and she spoke the words "I love you" to her.
Dave, Chris, Sarah, Matt, Maureen, Keenan and I surrounded her as she left this earth.
Erin was ERIN until the last moment.
And, I was blessed to have this precious daughter in my life for 18 years, 7 months, 4 days, 9 hours and 5 minutes.

Tuesday, March 9, 2010

I Worried About...

(in no order of importance or chronology, and there are many more that I'll think of in the middle of the night tonight)

-what in heaven's name was wrong with my child, before the diagnosis
-the diagnosis...CANCER
-whether my child would die
-whether I would be able to go on living if she did
-insurance coverage
-living on one income
-all the tests and biopsies to determine the most effective treatment
-what the chemotherapy drugs would do to her
-whether they would actually work
-whether they would make her sick
-whether she would ever eat anything other than clementines again because she had lost her appetite and so much weight
-how she would feel each time her hair fell out, each of the three times it did
-whether the wig tape would hold so that her hair wouldn't fly off in a big wind and embarrass her
-what the drugs would do to her heart, kidneys, etc. due to the toxicity
-whether she would ever be able to have children because of drug toxicity
-how strictly she should follow the prescribed low bacteria diet
-how she would ever make it through 10 months of 14 in-patient cycles of chemo
-how she would handle going to chemo 5 days a week, every 3rd week during the first semester of senior year after school and get up and go to school again the next day
-how home care could work, getting chemo after school at the house
-coordinating everything every day
-whether we would have good nurses
-whether we had the best doctors
-whether I was a good mother
-how I could keep getting up each day
-how to function on less sleep
-lab results
-low hemoglobin
-low platelets
-germs everywhere
-whether we should get a dog
-whether she would get germs from the dog
-the leg surgery
-the lung surgery
-the brain tumor surgery
-whether they would try to drag me out of adult ICU after the brain tumor surgery
-the unexplained cough she continued to have for months, even before there were tumors in her lungs
-how she would stay caught up in school
-how she would get her drivers license
-whether her friends would remember she existed
-whether people would make fun of her limp or lack of hair or scars
-whether all the radiation would blow a hole in her somewhere
-how she would cope with never being able to play volleyball again
-whether I would faint when I saw the size of the chest tubes when they pulled them out of her after her lung surgery
-whether she would fall down the stairs at school while wearing her stupid flip flops or birks instead of sensible shoes
-whether she would slip and fall on the ice and snow
-whether she would dislocate her hip
-whether her muscles would adhere properly to her new "femur"
-whether she was doing her PT properly so her muscles would become stronger
-whether I would be able to give her a shot properly
-whether I would be able to run her IV properly
-whether we should take an out-of-town vacation, what if something happened?
-whether I should work while she was sick
-bone scan results, many times
-chest CT results, many times
-MRI results, many times
-PET scan results, not as many times
-whether we should change hospitals for treatment
-whether she would graduate from high school on time
-whether she would go to prom
-whether her friends would call her after all the graduation parties were over
-whether her chemo schedule was going to conflict with important events in her life
-whether the bottom would drop out before she started college
-whether she should start college in spite of the bottom dropping out
-whether she could manage college and really wicked chemo
-whether she should move into college with a fever of 101
-whether she could continue to commute from home after moving back
-whether she would make new friends in college
-whether she would have pain
-once she did have pain, how we would control it quickly
-whether she would get into a car accident with low platelet counts
-whether we should go to the state volleyball final when we had a pretty good idea she had a brain tumor
-my sanity
-whether we were making the best decisions
-whether I could settle her if she became afraid
-not having the answers to her questions
-whether I was doing everything I possibly could to make things better or easier for her
-SO MANY things during the final three weeks of her life that I will not list here
-whether the whole family would be with her when she died

On December 18, 2009 at 4:40PM I stopped worrying. Every ounce of my being KNEW she went straight to heaven.

Now, I really don't worry about much of anything, and I wonder a lot about the things other people do worry about.

Monday, March 8, 2010


Sharing a simple bouquet of yellow tulips, one of Erin's favorite things, with you Karen, on Katie's 15th birthday.
May your happy memories stand strong on this day.

Katie, your bright legacy shines through your mom's grace-filled acts of kindness and courage as she sets a fine example of walking this uncharted path. Happy Birthday, lovely girl.

St. Baldrick's Foundation

Good Morning Everyone.

Tracy Kenny Scalise (Katie Frisbie's sister) is shaving her head in honor of Erin and other kids whose lives have been affected by cancer.
Her letter is copied below. You may click on the "St. Baldrick's Home Page" link to find out more about this fabulous organization that helps fund pediatric cancer research, and if you would like to help Tracy meet her goal, you may follow her instructions to navigate to her homepage.

You heard it right – I'm shaving my head in solidarity with children fighting cancer who typically lose their hair during treatment, while I raise critical funds for childhood cancer research!
In the US, more children die of childhood cancer than any other disease.
Please make a donation on my behalf to support childhood cancer research so that all children diagnosed with cancer will have a better chance for a cure.
Help me reach my goal of $15,000!

To make a donation, click: St. Baldrick's Home Page

Click on "Make A Donation"
Under “Donate on behalf of a Participant” type in my name: Tracy Scalise
Click “Search”. Then click “Donate”.

Come out to support me when I shave my head!
WHEN: Sunday, March 21st
WHERE: Kenny’s Irish Pub
917 W. 55th St.
TIME: 10am-1pm

No door charge...kids are welcome...treat bags for the kids!
*Anyone interested in shaving their head with me can join as a shavee on the same website and raise their own funds!*

We've marked our calendar for March 21st. See you at Kenny's!

Saturday, March 6, 2010

It's All About ME

Near the end of February, after I published my first couple of blog entries, I received an email from a friend who expressed concern about the lack of inclusion of information about the rest of my family in my entries. (I am only beginning.) There was worry that I had forgotten I have three other children.

This photo was taken on Matt's birthday in January.
It is so painfully difficult to take FAMILY pictures when one member is not there and will never ever be there again. The sunflower, a symbol of hope for those who live with sarcomas, will be in all future photos, representing Erin. We took FAMILY pictures on Christmas day, just two days after we buried Erin. I barely remember those days - we walked in a blur.

I responded to my friend with assurance that Chris, Sarah & Matt, and Dave are not forgotten, neglected or ignored, and after my initial knee-jerk reaction of Who does she think she is?! I began to wonder if others had similar opinions. Usually if there's one, there are more, and I began to reflect on the essence of her question.

It urged me to reread the Erin Update emails I periodically sent over the three-year course of her illness. And while the reason for the writing was always Erin's health situation, I realized that as time went on, the words took a turn in that they not only included the details I wanted to share about the then-prominent medical situation but, especially toward the end, became a vehicle of expression of MY OWN distraught feelings of helplessness and uncertainty, and also were a declaration of my immense pride in Erin for the way she continued to possess the ability to center herself and cope with this larger-than-my-mind-could-comprehend situation.

When a child/family member is diagnosed with cancer, the ENTIRE FAMILY has the disease. It affects each of us in a unique way, and we all cope with it in the manner in which we have the capability. Our lives have all been, and will continue to be, affected in ways exclusive to our own personalities and our relationships with Erin. I only KNOW the perspective of the MOTHER. I am not the father or the sister or the brother. I am the MOTHER, and when I write, the view is from MY perspective about how it feels for ME. To attempt to speak for one of the others would be making unfair assumptions on their behalf. I can assure you, each of us suffers indescribable, very personal, gut-wrenching grief.

And due to the exclusivity, there is no right or wrong way to understand and process the aftermath. Throughout Erin's struggle, each of us brought something incomparable and unmatched to the family plate of endurance. One matter I struggled mightily with was the need for the eventual attainment of a feeling of peace; I needed to have confidence that I was doing everything possible with Erin and for Erin, so that when all was said and done I could rest. I can rest.

My blog entries are not published in any particular order, and one does not necessarily hold more importance than another. I'm inspired to write what I feel at that moment, by a memory or a random thought as I attempt to freeze-frame those wild images flashing constantly. By doing so, my mind is forced to become more organized as I attempt to focus on one subject as I write an entry. For a brief time, my energy goes into that ONE thing, and the rest can fall away.

I mention other people as they fit into the thoughts of the day, the moment. Sometimes the entry is dictated by an event I'd like to share, a birthday, a volleyball tournament...or it is simply the image popping into my head that seems most pronounced. That can be a celebration of joy, of the blessings past and present as a result of Erin's struggle. It may be some quirky subject or random picture. And the entry can just as easily be one of pain as I unexpectedly fall through the trap door of all-consuming heartache.

So, I will continue to write what I want to write.
And this blog is all about ME!

Friday, March 5, 2010

They Say It's Your Birthday!

HAPPY BIRTHDAY to Erin's first best friend Gretta.

Even way back then, as Gretta was saying "Here Erin, I'll share my healthy, organic raisins with you" - Erin was thinking Yeah ok, I think I'll go for the candy bar, thanks!

In the spring of 1991, these little girls were born just two months apart, each the youngest of four children in our respective families. Look at all the hair on Erin!

By that time Gretta's mom Karen and I were pretty busy, and while we chased after the rest of the troops who were usually running down the street in their super-hero capes, these two were often left in the company of one another. It's no wonder each young lady grew up to be so confident and independent!

While making final college decisions, Gretta and her mom came for a visit last year about this time, and the girls had the chance to reconnect after having been apart for a very long time.

So, you go girl!
Keep digging in that dirt and save the planet!
And hit the crap out of that volleyball!
(can't wait to see pics of your "e")

Thank God for friends!