Welcome to My Cozy Room

Please come in and sit down. There are so many of you I'd like to talk with personally, but time just won't allow. We should be making our lists and checking them twice, but at this point many items that typically highlight mine have been removed, deemed unimportant for now.

Instead, very early this morning I abandoned the messy house, put on my coat and boots and jingled the car keys signaling RIDE to Keenan. We headed to Fullersburg and upon reaching the lot and putting the car in Park, were greeted by a mob of ducks who waddled up and pretty much tried to open the car doors. The lot is conveniently located a block away from a McDonalds, and the ducks are accustomed to admirers sharing their fries. I opened the car door for Keenan, and he dutifully scattered the bunch, sending them flapping and quacking to the creek in disgust. I often think of the irony of Super Size Me next to the entrance to serene, winding, wooded trails whose hills subtly remind one that it's wiser to drink your vitamin C and eat your fiber before heading in.

As I walked along, I thought of the past year. Actually, the past four years. Scenes in so many venues played before me, and I thought about the cast of characters who bless our lives, past and current ~ the relatives, the friends, the doctors, the nurses...

This post is long-winded. Really REALLY long-winded. Those of you who know me know I can babble. Sorry! But I seem to be bursting with so many things that I want to say to each of you. I composed parts of this over the last couple of days, as all these thoughts began filling my head. Forgive me if it's a bit scattered.

If you'd like, pick a chair. Grab an afghan.

I'll go and make some hot chocolate and we'll talk. 

Oh, I guess I'll be the one talking, but you're welcome to comment back.

I published my last blog post as the clock BELLOWED 12:00 am. I couldn't sleep; overcome with the need to feel my world shift again as it officially became December 18, 2010 - to see it through. Time, dutifully, stubbornly marched on without notice or care. I noticed and I cared.

One year. Gone... one year.
Now, one year and five days, but who's counting.

Feeling "written out" and overwhelmingly sad at the time, I published the passage from The Book of Wisdom, embedded the YouTube audio of For Good and pulled in photos that held personal significance. Without bringing in the hundreds more that would have supported my intention, I hoped you'd understand some of the sequence in relation to the theme of the passage ~ The age that is honorable... Baby Erin with a full head of hair at the starting gate of life, held with care by her big brothers. Chris at age 18, with Erin at age 7 holding her brand new stuffed lion, who lived on to faithfully accompany her in sickness and in health. Now he's a bit bedraggled with age, but still very much alive and well and shown in the photo below, held by Chris as he donated blood last May. He was a little nervous!  Chris, not the lion.  Saharsis provided comfort and joy.

More photos of a healthy Erin ~ of First Communion, action shots of swimming fly and jump-setting, being silly and oh-so loved. The baby. The caboose. The exclamation point at the end of the family sentence. Living the life of a typical kid. The group photo was taken on Dave's birthday in October of 2006... before we knew. At the time there was an inkling of things to come - knee pain "from so much volleyball" and the beginnings of weight-loss "stress about knee pain and upcoming club tryouts, and a kitchen under construction". HAH! Then, there is AFTER ~ with bald head covered with her favorite blue cap that's now tucked safely in her dresser drawer in her bedroom, post-leg-surgery crutches in the background. The arrival of Keenan in our lives. The achievement of a goal of nearly every 16-year-old: her Driver's License, through classes taken in Orland Park, earned between in-patient chemo cycles. A nap, after her relapse, post lung surgery. But "thumbs up", not to worry because life went on (screw you cancer!) even through tons of radiation as evidenced by the points plotted with marker below the lovely smile. Life certainly did go on... until it couldn't. The photos just scratch the surface of reaching the fullness of a long career in a short time.

It was the first reading we chose for Erin's funeral mass last year on December 23rd. Yes, a year ago today ~

The just woman, though she die early, shall be at rest,

for the age that is honorable comes not with the passing of time,

nor can it be measured in terms of years.

Having become perfect in a short while,

she reached the fullness of a long career;

for her soul was pleasing to the Lord,

And she who pleased God was loved.

It was an easy choice. A perfect fit. The passage is longer if you reference it in the Bible, but we left out the fire and brimstone parts that shake much of the Old Testament. With preference toward a gentler tone, we took liberty and edited the passage slightly. Much like the cropping of background scenery out of a photo to enhance the subject, we felt just these words were necessary to succinctly convey our message, our focus.

Erin had certainly NOT ~ become perfect in a short while~ from a human standpoint. Just ask her brothers and sister! Stories of past discretions were swapped at the dinner table on the 18th, as we toasted her memory and ate her favorite chicken tenders to carry on the tradition of our yearly December visit to Palmer's. 

It took years for these two to agree on anything.  "Scratching!!!"

Yep, Erin packed it in as best as she could with the time she had.

A short life well-lived, but not perfect.

I remember a conversation I had during the middle of her senior year in high school, with a select group with whom I'd shared news of probable cancer progression, months before we let the news leak to the public. Part of what I said centered on the intention we as a family had to make sure she LIVED life to its fullest for as long as she could. I went on to include the fact that I was thrilled because she'd experienced her first car accident. I know, nuts right!?

That September she'd rear-ended someone who had slammed on his brakes to avoid hitting the "idiot" in front of him who assumed the stop sign didn't personally apply. (Do you know how many times I'd advised her not to follow the car in front of her too closely?  Do you have any idea how hard it is to get pissed at your kid when she has cancer!?)  Naturally this event occurred less than a mile from home as the insurance companies remind us. It was three blocks away, and it was an hour before the whole LT varsity volleyball team was due at our house for a pasta party and I still had to run and pick up some of the food! Erin was absolutely fine, just scared. The person she'd slammed into couldn't have been more gracious. I'd arrived at the scene within a minute of receiving the call from Erin, her little voice quivering on the other end of the phone. I'd jumped out of my car and raced toward her, so concerned that she'd been hurt. This man, assuming this was an angry charge toward my irresponsible teen, immediately said, "It wasn't her fault! It wasn't her fault! Don't be mad at her!" I'd looked at the crumpled back of his brand new car, the smashed front of our ten-year-old little red Mazda, my daughter whose floodgates had opened when I'd appeared on the scene but stood unharmed, and said Thank You God!!

During Thanksgiving weekend of that same year, she had all four wisdom teeth removed. After leg and lung surgery, 30 blasts of radiation and countless liters of chemo cocktails, she really wondered what all the hype and fuss was about, and by evening was eating dinner with the family. Once again, a situation proving how perspective factors into just about every scene in life. Sarah had stayed home to be her nurse for the weekend, and since her limited medical skills really weren't needed, they spent time watching episodes of Family Guy and shopping.  Even better.

I consider both of these experiences Rites of Passage for the average teen. As nutty as it may seem to you, I feel they both also enter into her ~ reaching the fullness of a long career. Normalcy. So does living in a college dorm, even for only two weeks, and attending college for two months. Hence, the photo of her with the Elmhurst back pack. Yes, a short life, well-lived.

Those of us left behind must let go of our loved one's physical presence, release the images we conjure of where and how that person would fit into the day-to-day dynamics of our current world ~ home from college doing her last minute shopping, interactions with siblings and their significant others and their friends, etc.

We watch dreams of future events vanish before our eyes. Graduations, careers, weddings - dreamy wisps, portraits of a life that will never be.

After reading my post the other day, my blog friend Karen pulled the same passage into her thoughts of the day Here at Gberger where there is a photo of her gorgeous daughter Katie, 12-years-old at the time, and a bridesmaid in a relative's wedding. Katie passed away just a couple of weeks after that breathtaking photo was taken.

Karen wrote about those same thoughts as they pertain to her personal family dynamics, as does another blog friend Kathy, Here at thisistheday. Kathy writes about her beautiful daughter Allison who, at the tender age of 21, was diagnosed with lung cancer and passed away eleven weeks later, just two weeks after Christmas. Lung cancer at the age of 21!, and I can't even wrap my mind around the thought of only eleven short weeks!!

I've yet to meet these women, and others who post comments on my blog, in the flesh but we are part of the group that swirls so many of the same thoughts in our heads as we try to move forward each day, and I constantly look to them for advice for some are a few steps ahead of me in this process.

Though a short time passed here on earth, in God's eyes these three girls ~ reached the fullness of a long career ~ and were invited Home. They reside with Caroline Grace, Luke, Amanda, Ben, Jody's son...and so many other angels, with others doing their best to decline invitations to join them. I wait, with those teens and their mothers/aunts constantly on my mind.

Below is the trailer for a newly released movie, Rabbit Hole. Hit the arrow please.





Why didn't He just make one? Another angel. I mean, He's God after all.

Tell me we don't all think this at one time or another!

Go and grab a tissue if you need one. It's too bad you can't put this blog post on audio. I'm sure with Christmas just two days away you have better things to do with your time ~ clean your bathrooms, prepare food for your holiday parties, polish your nails...

Take a break if you need to and come back. I'm just getting warmed up. I told you, my head is awfully crowded and it's got to go somewhere!  Remember the old pressure cookers?

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
OK, during Intermission I have to tell you about an AHA moment. I told Sarah that some of you kids sign your name in my comment section and on Facebook (I'm not on Facebook but Sarah shows me Erin's page when she's home.) and put <3. I asked her what "less than 3" meant. She said, "Mom it's a heart." HUH? I turned my head sideways and thought for a bit. No, really a pretty long time. OH - got it! Did all of you know that already?
<3 to all of you too!
~ ~ ~ ~ ~ ~ ~

We chose the song For Good from Wicked to be sung at Erin's funeral for many obvious reasons if you're familiar with the words. It was suggested by the music director, and Jen and Alison have stunning voices. If you were in attendance, I think you'll agree that it was extraordinary, a perfect follow-up to Chris' eulogy.

If you're not familiar with the lyrics, I hope you'll go back and hit the Play arrow and listen carefully. It's a beautiful song about lessons learned, friendship, change, forgiveness and opportunity, with an intro that rings clear and true.

I'm limited.
And just look at you
You can do all I couldn't do...
So, now it's up to you for both of us
Now it's up to you...

One year later, I'm struck by the amount of change borne of desire to make a difference ~ the ripple effect of opportunities grabbed, awareness gained and shared, and generosity poured forth from SO many sources since the diagnosis and passing of one little person. A year in review.  A year of wonders. And there's so much more.

~ A traditional celebration during Catholic Schools Week at St. Cletus is the day-long Red/White Volleyball Game beginning early in the morning with kindergartners, and then progressing through each grade level. At the end of the day, the top dogs of the school , the 8th graders, compete. Last January, the two teams made T-shirts, and the RED team sported one with this fabulous message ~ InspiRED by Erin. Does this name sound familiar? Thanks to Jack's brilliant idea, a blogspot address was conceived and I let it loose on the Web the following month, with the intention to work toward landing on my feet. The banner hangs on our wall here at home.

~A Memorial Volleyball Invitational last February raised over $10,000 which was donated to The Sarcoma Alliance. The date has been set for the Second Annual Event and I'll post news about it after the first of the year. It's gonna be even bigger and so much fun! Dust off your shoes all you alumnae!

~ The "old folks" got inked when a dear friend came to town for a visit.

Not that we need a reminder of "e"

or #8, but we do feel pretty cool!

~ There were donations of hair to Locks of Love and heads shaved for St. Baldrick's Foundation.

~ 231 units of blood have been donated toward 556C, and we're still counting. The 2011 date has been confirmed and I'll share info after the first of the year.

Sunflower seeds sprouted all over, representing HOPE.
Anne Lamott's quote is worth repeating. Makes such good sense.

Hope begins in the dark,

the stubborn hope that if you just show up

and try to do the right thing, the dawn will come.

~ A setter's award in Erin's name was presented from Lions/1st Alliance Volleyball Club to Jill Paluch.

~ Relay for Life teams continue to raise money for the American Cancer Society, little lime green ribbons on shoes remind young players to be thankful for the gift of good health, candles glow in homes in remembrance and prayer.

~ Brendan chose to earn his Eagle Scout Badge by coordinating a toy and gift card drive in memory of Tyler and Erin to support The Pediatric Oncology Treasure Chest Foundation. Hundreds of toys, $2055 worth of gift cards and over $1000 in monetary donations were collected through Brendan's hard work and the generosity of the community.

~ Lions/1st Alliance teammates, now Division I volleyball players, wear Erin's name and #8 on their armbands.

 She's invited to join them on the court as they play in gyms all over the country.

with Purdue player, Courtney

with U of I player, Jessica

~ An invitation was extended to a student to participate in a study at her university that is investigating new targeted therapy that minimizes or eliminates the toxic effects of chemotherapy on healthy cells by honing in on only those involved in the disease. A realistic hope for the future of cancer treatment.

~ A speech was given in class about Ewing's sarcoma ~ in Spanish! It's NOT the primary language of the student!

Both of the girls mentioned above also invite Erin to play.
Ali at Elon, and Kristin at Northern Illinois

~ LT hosted "Purple for Potts" on Varsity Volleyball's Senior Night and raised $2000 for Sarcoma Research.

~ In October, I received an email from a member of the Illini 4000 for Cancer. This young lady attends the University of Illinois, and last summer she biked with 27 other students across the United States, from New York to San Francisco - 4000+ miles in ten weeks!! to raise money and spread awareness about cancer.

This out-of-the-blue email was my first introduction to Jaime. She told me she was in Erin's gym class during sophomore year when she was diagnosed with cancer. I've never met her, and yet she wore Erin's name on her back along with the names of other family members and friends, to help motivate her on the journey. Please click on the site and read a bit about it when you have a chance. We'll stay in touch with the intention of meeting up with the 2011 group as they bike through Illinois. There's mention of some team members possibly attending our 2011 Annual Blood Drive in May. I look forward to meeting this young lady when she finishes studying abroad.  Thank you so much, Jamie.  4000+ miles!! You're all studs!

~ I received another email from a young lady whose path crossed Erin's some time ago. She wrote to me once last year, just after Erin died. A beautiful note. I've not met her either. Ever. She's now 23 years old, and just finished hosting her 2nd Annual Project Linus Event, with her group making 179 blankets that were donated to a children's hospital in Iowa. Please click on this link also, and read about this fabulous cause.

This young woman had several extraordinary things to say. It had been written in the wee hours of the morning. Time sent - 3:31 am, December 17th.
As I absorbed her words when I awoke that day, with fresh tears anointing the first sips of morning coffee that burned my tongue, I was humbly reminded again that the Lord will provide what is needed, when it's needed most.

With her permission I share just a sample of her words - thoughts that often take the average person a lifetime to come close to recognizing, let alone articulating ~
  ...And now, as I said, I am moved to tell you this: no one will forget Erin. No one. I can imagine how and why you would feel like that, but when I wrote to you last January from my college apartment, I promised you she would be remembered and cherished, and I keep that promise a year, and many changes, later. I have been on a roller coaster since then, but have kept you and Erin in my heart through it all, pinning her funeral card on my wall wherever I happen to be living, as a calming reminder of what it means to be alive...
 and "...Just about every time I read your blog, I tell myself (usually with tears streaming down my face) that I have to stop reading it because it's too hard. But I always go back. And I think that's because it is so GOOD to feel that pain, in a way. How else do we learn? How else can a heart grow?..."

Read her words again, please. There is no need for me to add a thing.
Thank you.
~ ~ ~ ~ ~ ~ ~ ~ ~

This morning, after Keenan and I walked the trail in the woods

we went over to Bronswood.

December the 23rd

It had snowed furiously for several days,

beginning the evening of December 18, 2009

not long after 4:40 pm.

We all said, Erin is announcing her ongoing presence with authority!

The day of the funeral was snowy, blustery, sleety, slippery. I feared the pall bearers would drop her as they ascended the hill to the plot of earth below the pine. I see her Uncle Derrell's hat.
I remember...

I remember the altar adorned with the children's snowflakes, the booklets, the readings, the intentions, the homily, the music, Chris' eulogy, the sea of people, the procession, the winding road into Bronswood, over the creek to the right, to the right again, the hill, the pine tree, the empty wasp nest,
red roses, the gaping hole in the ground...

"In the sweat of thy face shalt thou eat bread,

till thou return unto the ground;

for out of it wast thou taken:

for dust thou art, and unto dust shalt thou return."

Genesis

My final act before walking away from her at Hallowell & James was to brush her eyelashes with my right index finger. Those gorgeous, thick, dark lashes that had once again pushed through the effects of chemotherapy like crocus forging through the cold snow in spring. I had forgotten that until I stood here this morning. Then I remembered, vividly. It's so odd, the way things hit and the timing of the recollections.

And I can hear John Callahan's deep, rich voice.

Sleep in Heavenly Peace. Sleep in Heavenly Peace.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Today, I looked at all the special things left by visitors. Red roses and a bouquet of sunflowers have been laid in the snow. Ornaments hang from the branches of her Christmas tree ~

a fuzzy stocking with an E holding a big candy cane, glittery snowflakes, a silver "E", a red butterfly strung with a ribbon from The Childrens Cancer Research Fund, a pair of swim goggles...

Mesmerized, I stood soaking in the sights before me while rooted in the memories of a year ago. The flood of gulping sobs came.  Keenan rolled in the snow.  He always rolls on her.  Does he know?  A gust of wind blew suddenly. The chilly air bit my cheeks. Dampness signified the approach of predicted snowfall that will add to that which already blankets the trees and that hallowed plot of earth. Several sets of windchimes rang. I looked over to the birdhouse that I photographed last October and lines from the poem Morning Song that I copied here filled my head.

I am struck by what becomes holy.

And taking deep breaths, I also heard ~

Bear yourself up on small wings to receive what is given.

Is this truly the answer? It sounds so simple.

As I stumble my way out of 2010 into the New Year, with NOW IT'S UP TO YOU echoing in my head and the intention of finding my True North as my goal, I walk with so much gratitude in my heart to all of you for each gift bestowed over the past years, too countless to name.

Peace to all who enter this blog space

and allow me to share my life with you.