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"

Friday, April 30, 2010

"This Is My Life. I Am Trying"

I was introduced to some of author Anna Quindlen's books while going through my mother's things after she had died on April 27, 2004. Bunny (my mom's nickname - most didn't even know her name was Rita) had become a voracious reader and crossword puzzle lover, reveling in the luxury of the time afforded by her senior status, and finally slowed by the effects of extensive arthritis. Throughout her 92 years, her mind hummed with gracious thoughts, deep faith gained through acceptance of God's decisions, and the conviction of one's common sense dictating one's actions.

One of my fondest memories is that of my mom and I taking Erin to her weekly piano lesson. The public library is located a couple of blocks away from the music school. Each Wednesday we'd park at the school, leave Erin at her lesson and slowly walk to the library, where my mom would choose as many large-print books as I could comfortably carry (her seven days worth of reading) and then we'd walk on back to pick up Erin. That 1/2 hour was the perfect allotment of time, and it became a treasured routine, now an etched image. I can so clearly envision the fully intact, tri-generational sequence ~ Erin at age 10, myself at 43, and Bunny at 90.

Among my mom's belongings was a copy of "A Short Guide to a Happy Life". Written in 2000, this concise book offers sage advice to some who find themselves focused on matters that they may eventually discover are of no great significance, while urging them to turn attention to the often unnoticed details of life.

The intro on the book jacket, that I have to admit didn't grab me so much just six years ago when I discovered it, and now for obvious reasons holds new meaning, reads ~

"Knowledge of our own mortality is the greatest gift God ever gives us, because unless you know the clock is ticking, it is so easy to waste our days, our lives."

The author of this book, Pulitzer Prize-winner Anna Quindlen, was 19 years old at the time her mother died of ovarian cancer at the age of 40. The once New York Times columnist, who also wrote Newsweek's the "Last Word" column from 2000-2009, has written several bestselling novels and works of non-fiction.

In this particular book she pinpoints the pronounced dividing line drawn in her world due to her mother's illness, causing a defined BEFORE and AFTER.
My life will forever be divided into BEFORE and AFTER by Erin's cancer diagnosis date ~ December 15, 2006

She continues on to emphasize the important difference between one's work and one's life, and expresses pride in her roles as mother, wife and friend. In reference to those relationships, she repeats the straightforward and uncomplicated statement ~
"I show up. I listen. I try to laugh."

Last week I was fortunate to hear Anna Quindlen speak at a local book store while promoting the release of her most recent novel "Every Last One". It's always exciting for me to hear an author read an excerpt from a book they've written. As she read a chapter, I closed my eyes and listened as she gave voice and first-hand credibility to the characters she had created, breathing life into what my mind can only imagine when I read someone else's work. Afterward, she shared some information about her very interesting life, and answered the audience's questions with candor, wit and humor, and then we were given the opportunity to have our books autographed.

I finished reading my book yesterday, and I have to say I feel as though many of my thoughts have just been written by this famous author who has composed my experiences with a trained, literary eloquence I can only dream of. This book is not about a child dying of cancer. It is a first-person narrative about the occurrence of another type of tragedy, which results in uncannily similar feelings and reactions by the mother, Mary Beth Latham. Even though the cause of the protagonist's pain is a completely different set of circumstances, as I turned the pages I felt as though I was white-knuckling the same towrope in the wake she rode in the aftermath.

The book is about BEFORE and AFTER. The BEFORE is about mostly-normal life in an average family; husband, kids, employment, topped with some foreboding issues. Every family has issues. It's written in artful language, without falling prey to the trite verbiage I feel is typically used by many authors as they attempt to convey the natural rhythm of day-to-day life.

The AFTER is written in a manner that so accurately parallels my thoughts that I feel as though Ms Quindlen has been almost voyeuristically roaming around in my head. As the main character walks through her days in the residue of her personal tragedy, I walked in likeness of so many instances. The way she wrote about
~ awakening from the peace of a dreamless sleep to the abrupt reality of each new day's uncontrollable mind-video of constant replay and fast-forward - with Erin/without Erin, happened at one time/will never be again...
~ the luxury of feeling ordinary for brief moments in time.
~ the struggle to be genuinely pleased for the happiness and good fortune of others without the underlying I-want-it-to-be-me tone reverberating in the back of the head.
~ the wide variety of reactions on the part of the community toward her, and hers toward them.
~ the fear of opening boxes containing personal treasures and notes.
One scene evoked memories of the pain I felt while watching Erin receive letters of interest from colleges who had seen her play volleyball when she was 15 (pre cancer, pre life-altering leg surgery), who were pursuing the possibility of her playing volleyball with them now that she was of the age that was legal per NCAA guidelines to contact potential team members. I never told her, but I grabbed some of those letters as they showed up in the mailbox so she wouldn't see them when she got home from school.

There were so many areas where I found common ground and, through the use of many tissues, I thought the book was fabulous. Last week after Ms Quindlen spoke, I chose to have my book autographed.

When it was my turn, I babbled something about being introduced to her writing through my mother who was no longer living, that I was so happy about finding her books when my mom died and that I'd gone on to read several others. I told her I enjoyed listening to her speak and then unexpectedly blurted out, "And my daughter died from cancer last December." I don't offer that information in the beginning of a conversation with a perfect stranger, especially in a situation that calls for a bit of decorum, and at that time I had not yet read the book and knew absolutely nothing detailed about the story line. Most likely, my comment resurrected memories of Ms Quindlen's intimacy with her own mother's cancer, and she uttered kind words about "having trouble imagining this situation with a child" and then looked me in the eyes, held my gaze with a look of deep compassion, and said, "I'm so humbled by your experience."
She autographed my book "For Mary - one mom to another-"

Regrettably, because I found the books after my mom died, I was never able to ask her about her thoughts concerning any of Quindlen's writing or about the advice in "A Short Guide to a Happy Life". I so often wonder about what her reactions to Erin's cancer would have been. I do have a hunch that Bunny would have concurred with Ms Quindlen's advice~
"I show up. I listen. I try to laugh."

And I concur, with that advice and with the unmistakably perfect last lines of "Every Last One" ~

"It's all I know how to do now. This is my life. I am trying."

Tuesday, April 27, 2010

Yes, I'm Asking Again!

My sidebar ticker says there are 18 more days until the Blood Drive.
Happy 18th Birthday Erin!

Thanks SO MUCH to those of you who have already signed up to donate. As of this morning we have 115 willing and able people coming on May 15th.
That's wonderful, but I'm hoping for MORE!

Through conversations and emails, and according to Facebook "yes" responses, there are MANY more out there who "intend" to come, but haven't committed yet. As I look at the names of people signed up so far, I don't see many of the names of those who have expressed an interest in participating.

My concern is that LifeSource won't be adequately prepared if people decide to come at the last minute. We want the day to run as smoothly as possible, and we're hoping everyone will have a meaningful experience. Please help us plan by signing up now. (Click on Instructions above.)

LifeSource just added some stations, so now we have additional time slots to accommodate - the St Cletus track meet, Saturday errands, teens who want to sleep a little later and most other activities. There should be enough flexibility to fit everyone's hectic schedule.

We hope many more of you will choose to come and celebrate Erin's 19th Birthday with us.
There will be balloons and cake:)

Monday, April 26, 2010

30 Years!

In the beginning there was an invitation ~

To witness a commitment.
I Dave, take you Mary, to be my wife. I promise to be true to you, in good times and in bad, in sickness and in health, until death do us part.

With this ring, I thee wed ~

With a kiss to seal the deal ~

The guys.
Rob is planning something here!

The girls.
Hmmmm, who had been in Florida for Spring Break?

Ahhhh the 80's!
Look at our awesome curtains and our HUGE TV set!

Another kiss to keep the deal sealed after 20 years ~

And the magic continues... ~

Saturday, April 24, 2010

The NFL Draft

I understand the 2010 NFL Draft has been going on.

Who needs Tim Tebow?

Wednesday, April 21, 2010

Why Do I Write?

Good question!

After living in the cancer world for three years, I'm struggling to find my way back into the land of normal. You might think it would be a no-brainer. Regular living should look SO appealing after spending countless days and nights in the hospitals, chemo out-patient centers and waiting rooms. Yes and no. You can't run away from those places at the time because you HAVE to be there, and after a while they BECOME your way of life, and in a crazy way few understand, they evolve into very secure places. People take care of you there. You don't have to explain anything to anyone. They understand. They even bring you the comforts of tea and a heated blanket when they notice you need them. In my case they cared for my child, but any of you who are parents know that when someone cares for your child, they care for you in turn.

If you've been reading my blog, you know I began writing at the end of February, after the encouragement of some friends who thought I might have something to say. I'll reiterate my lack of formal training in writing, and therefore apologize for flaws in grammar or lack of proper flow. I'm an accounting major, former school office jack-of-all-trades & athletic director, and nurse shoulda-been, wanna-be. Now there's an interesting package.

Throughout the three years Erin was sick, I sent periodic, informative emails if there was a specific situation calling for the dispensing of news. There is a wonderful service called CaringBridge available to people who wish to share information about their loved ones who are in a health crisis. This free, online service allows you to set up a website and post ongoing information so you're not repeating yourself 136 times when people want details about the person who is ill. We chose not to use this service for a couple of reasons; the main one was that Erin wanted no part of it, preferring to be known as ERIN and not "Erin-with-cancer", and also because I just didn't have the energy at the time to update and detail a website. My blog has become my way of sharing what I just couldn't talk about then, and now can, so you will find my entry subjects leaping all over the place; from dark diagnosis days, to treatments and surgeries, to all-consuming worries, to reasons for gratitude, to some random photo...

Welcome to my head! This is truly a way of inviting all of you to periodic gatherings at the residence of the Sane Mary and the Crazy Mary. Grab some coffee and a donut, and come on in. It can be an experience!

I begin a post by simply writing what I feel at a given point in time, sometimes dictated by a memory flash-back, good or bad, or perhaps by an event such as the Blood Drive. Because there is the possibility that someone will actually READ what I've written, I focus more carefully on the expression of details that might otherwise go unnoticed. As I reread and edit, I'm forced to delve into the subject matter of that particular post, rather than merely scratch the surface and move on.

That deep digging helps to process things that, at the time of occurrence, I just forged through with my head down because I was so intent on Erin's situation-of-the-time that I couldn't think clearly. Some ask why I WANT to go through all that, since the writing brings me to a place of such concentrated depth . Good question. After writing a heavy post I'm often exhausted, as a child after a tearful temper tantrum, but it allows me a chance to move on from that particular experience with a greater understanding of it. The articulation of a situation often relieves a certain amount of the intense emotion. I fear if I don't go through some of these things now, they'll surface at a later time in an undesirable fashion - most likely anger because what the cancer physically did to my daughter was evil and ugly, and if I don't attempt to do something positive with it, I could self-destruct. And sometimes I just want to wallow in the sadness because, damn it, I deserve to!

I'm not always able to write about heavy topics even though it's cathartic. Due to the draining nature of it all, I often choose to intersperse my posts with fun things that make me happy as I compose them, including photos, quotes, etc.

The combination of purge/relief and focus on joy, helps push me outward beyond the grief to my ultimate goal, as author Anne Lamott aptly expressed and I posted in my sidebar quote - Living with a broken heart and learning to dance again.

And, please accept my apologies if I get a bit preachy every now and then. Sometimes my goal is to extend an invitation (to other parents and also to Erin's peers) into a world that exists beyond the realm of what the majority of you will ever experience. Viewing can be done from the safety of your own living room couch or dorm room chair, without the dreadful cost-of-loss admission I had to pay. Most of you will not have a child die from cancer. Very few of Erin's peers will be diagnosed with cancer at this young age. Thank God! However I found my own blissful, pre-cancer-experience lack of awareness was not always a good thing. As difficult as it was (and I would NEVER have chosen this by free will) - still is and forever will be - to go through, I find myself in an enlightened state of empathy and understanding of which I had been oblivious. That other side of the coin is SO scratched, but has the potential to shine brilliantly with proper attention. I've been taught faith, endurance, perseverance, acceptance and hope on an up-close and personal level. I found courage to do things I would NEVER have thought possible.

Through the "rabbit hole" of the internet, I've found other mothers who are some steps ahead of me on this path, and as I follow their bread-crumb-trails of experience and wisdom, I steadily gain courage that I can continue to do all this and survive. This exclusive club of mothers, that requires an exorbitantly high fee of its members, is not in my own backyard since this is a rare experience in relation to the general population's challenges. I walk through my days as the exception to the rule, as did Erin. My situation is a unique one around my neighborhood, and one that few people really understand. And, why should they? I certainly have trouble and I LIVE it! So, it is a comfort to find a familiar soul who is groping along this same road, and I've unexpectedly heard from some who have also found me in their quest to be with their own kind. I only wish I could sit and look them in the eyes and not have to converse through a computer screen.

In the past when I sent emails, you as the reader had the "delete" button at your finger tips. Now, if you want to read what I've written you must enter my blog by choice, so I can't force thoughts upon you. I'm not sure who reads what I write because most people don't write a "comment" at the end of my posts. I receive some emails from individuals who say they'd rather respond in private, and others say they don't know HOW to "comment". Many stop me in the neighborhood to chat. Thank you, each of you, for taking the time to read and then talk to me, for I appreciate your feedback and encouragement.
So really, the answer to the Why Do I Write question?

Monday, April 19, 2010


On Friday night, Northern Illinois University held its Relay for Life. The Convocation Center was filled with students who had formed teams; some honoring family members and friends who have survived cancer or are currently undergoing treatment, and others uniting in memory of those who have passed away as a result of the disease.

The money raised at the many Relays held throughout the country supports the efforts of the American Cancer Society, which is the largest private funder of cancer research in the United States. The ACS not only supports vital research and clinical trials of new drugs, but provides nutrition and lifestyle-choice advice for the maintenance of good health, screenings to assist in early detection of certain cancers, insurance advice to patients, a peer-system with survivors and caregivers offering encouragement to those currently undergoing treatment, and many other valuable services.

I mentioned Erin's remarkable friend Kristin Hoffman in an earlier post. Kristin, the NIU volleyball team's setter, personally raised the impressive amount of over $1500. She was the Relay's fifth highest fundraising participant, adding to her volleyball team's total of approximately $3500, the third highest amount of the 89 registered teams of NIU students that together raised $69,000.

Participants had set up tables and activity stations around the track; some promoting awareness of cancer-related issues, and others offering more fundraising opportunities through a variety of games, contests and the sale of baked goods.

Team members and those of us in attendance walked the track, chatted, laughed and took part in the activity station games while enjoying the company of one another.

At 9:00pm the atmosphere changed, as the Luminaries were lit and the Ceremony of Hope began. We gathered together and listened as one brave student spoke, sharing the personal impact of cancer on her life; with her father having passed away from the disease, her mother now a survivor. As two students, one playing the guitar and the other lending his vocal talent, performed The Beatles' "Let It Be", a touching Powerpoint presentation was projected on a large screen. Team participants had submitted names and photographs of survivors and of those who have died, each a cherished loved-one of someone present, and we sat in witness and quietly honored every one of those courageous individuals. Kristin had submitted a beautiful photo of Erin taken at prom along with volleyball pictures.

After the Ceremony, we were asked to return to the track and walk in silent regard of our loved ones. Everyone did so, with deep reverence, past the Luminaries that lined the track - small yet strong emanations of faith and hope, announcing the names of those we cherished.

When Erin was hospitalized during her second chemo treatment back in January of 2007, her volleyball teammates visited and hung signs on the walls with inspirational quotes written on them, to encourage and remind her of their support as she began the cancer path.

As Kristin and I walked the path Friday night she took my hand, and together with tears flowing freely we lapped the track in silence. I thought back to one of the quotes she brought to Erin.

we all stumble,
every one of us.

That's why it's a comfort to go hand in hand.

~Emily Kimbrough

thank you again Kristin...

Friday, April 16, 2010

The Reins of Control

Recent conversations with someone who has met cancer on more than one occasion, the approach of the four month mark (April 18) since Erin died, her May 14th birthday looming like a beacon and the upcoming blood drive, have all caused my brain to spin more thoughts about control - what I can and what I can't, and review of my ongoing effort to pick and choose.

My experience as a caregiver in the cancer world brought a personal awareness to the fact that in spite of the difficulty of giving the reins of control over to someone else or letting go of them completely, it was one of the most important goals I asked of myself. I learned the best way to honor a person who is dying is to allow that person to LIVE the way in which THEY feel the most secure and fulfilled, not in the way it pleases those who will remain after. That can be a monumental challenge when the one who should hold the reins is your 18-year-old child, who is not really a child anymore after all she has endured. The release of the innate motherly response to attempt to fix whatever was wrong, and thereby allow and encourage Erin to make the really significant decisions, was an often daunting and deeply humbling task. Under the typical circumstances of the common cold or flu, we moms fix everything through the loving administration of chicken soup, a blanket and sometimes an antibiotic. Doesn't work here. Those items certainly offer comfort but, to put it mildly, cancer is unique.

Watching my child LIVE life with an impending deadline was a surreal novel with many chapters. Drawing the line between what SHE wanted or what was best for HER, as opposed to what I sometimes thought was needed, required ongoing selflessness. I found that what Erin wanted most was normal, day-to-day activity; being with friends, attending school, coaching volleyball, an evening at Tropical Snow... without the rehash of ongoing cancer issues of the time. She didn't have a "Bucket List" of I HAVE TO DO ALL THESE THINGS BEFORE I DIE desires. At times there was that frantic urge on my part to make things just-so. On some of those occasions, it was just-so for ME, not Erin.

Gradually, I learned to do better and I grew in appreciation of the simplicity of just being present, soaking in the extraordinarily enhanced vista of each day.

Once it was apparent that the cancer was wreaking havoc in spite of the chemical counter-assault we were waging, I stopped looking at scans. Scans made me ill. Looking at what was going on inside Erin's body seemed to be in direct contradiction with what was going on outside, and I preferred the seat with the exterior view.

In spite of being tethered to necessary treatments, the beautifully intact girl on the outside was still going out with friends, attending school, happy and engaged in life. The monster on the inside, that stubbornly ignored our plea for an exodus, was artfully crawling its way through her, and finally the only thing left to do was to put out the fires that stealthily flared. NOT looking at the scans was in no way a case of denial. I was PAINFULLY aware of what was happening. It was a conscious choice on my part not to focus on what I could not control. Others cope by feeling the need to know every minute diagnostic detail. That's fine. Their cancer, their choice.

In the beginning stages of treatment it was a different situation, but in the latter part I chose otherwise. Because we had complete trust in the doctors to make the best medical decisions upon review of the scans, the reins were handed over to them. I felt my job was to support Erin's wishes and make her life the best it could be when we walked out of the hospital building.

(I can't accurately read a scan anyway, and I certainly don't know how to determine the most appropriate medical tactic based on things lighting up on one scan and then showing shady areas on another. It takes years of expensive schooling to achieve that ability. It is not my forte.) In order to do that with confidence, we needed to establish a flight pattern with Erin's doctors, with all wishes and goals COMPLETELY understood by ALL parties involved. We did. And because we did, we let the doctors take the reins, read those scans and decide the best course of action. Essentially, we made the decision to soften any mounting turbulence and achieve as smooth a landing as possible. When I couldn't sleep at night, I wanted to see Erin's smiling face in my mind's eye, not a bone scan or a PET scan, with lit-up hot spots making me want to jump out of my skin and scream FIRE FIRE!

The ability to put fearful thoughts aside, or keep moving in spite of the invasion of cancer takes a lot of practice. To be able to go about the normal activities of school and a job when "Yes, there are tumors in her lungs, but not-to-worry, there is still plenty of healthy lung tissue, and she feels fine." is such a bizarre concept. Just like, "If there is some bone pain in that area we can hit it with some radiation. Oh she has a test today? Well, we can certainly do it after school". (thank you Phil) Or, the one that took three years for me to reach "Well Erin, you and I are pretty sure those symptoms mean there's a lesion in your skull/brain, but it's Saturday and we don't want to have to go through the ER. Nach (her oncologist) will be back from his out-of-town trip on Monday to direct the course of action. Shall we just go to the state volleyball tournament tonight? Yes? All righty then. I'll shoot him an email and we'll call him first thing on Monday". Doesn't that sound absolutely insane? It does to me when I read what I just typed, but that's exactly what we did. It defies normal logic.
There is NOTHING logically normal about cancer.

And then, the ability to really let go, to give her my blessing to leave me, was the ultimate sacrifice. I recently read the email I sent out after Erin passed away, entitled "It was time". For those who were not on my list, this is an excerpt from my letter ~
What is important is emphasis of the fact that Erin was ready, for her life had become one that was too difficult for her to bear much longer. After a three-year battle that ended with this horrible, insurmountable consequence - the inability to move herself, Erin was tired - rightfully spent from all of it. That's not to say that she complained or stopped being her smiling, sweet self. She remained unequivocally "Erin" until the very end. The few of you who saw her can attest to that.

Erin left in peace, after spending that final day with all of us surrounding her with abundant love here in our home. It would have been selfish to want anything else from her.

-written January 4, 2010

As I read this now, several points stand out: That "she remained unequivocally ERIN until the very end". (Success. She held the reins.) That so soon after her death, I could vocalize "It would have been selfish to want anything else from her". And then there's the "all of us surrounding her with abundant love" part. Thank God... yes, thank God for all of it.

All that being said, I would give my right arm to see her and hold her right this minute. I would be lying if I said anything different, but that is my heart and not my head speaking those words. I know where she belongs now, and it's not in my arms. It's in her place of peace. Dear God, talk about sacrifice!

And now that she's gone I obviously can't control that and bring her back, but I can do something to honor her memory and help others in the process. The upcoming blood drive is something over which I have a degree of control.

Tying it to her birthday gives me something positive to focus on as opposed to the alternative - thoughts of her being gone that could EASILY consume me from now until that day. It certainly won't fix that fact, but by throwing energy into this, I hope to cushion the blow somewhat. I can't control who comes, but I can put it out there as an invitation to people, with the HOPE that they will choose to step forward and make a positive difference in the life of someone else. I had a slap-in-the-face, reality check every time Erin received a transfusion, and there were many due to her surgeries and mostly to the effects the chemotherapy finally had on her bone marrow's ability to produce red cells and platelets on its own. I was shocked to learn that only 3% of the Chicagoland population donates blood. I can understand a person's aversion to needles and blood. If you're nervous, I'll personally hold your hand, make faces, sing a song! I'm pretty accomplished at redirecting focus that tries to sway toward something unpleasant or fearful!

Please check your busy schedules this weekend, try to make some space for May 15th and sign up. Thank you to those who already have. You'll be helping me, and you'll honor the memory of Erin and others like her who live a life that's VERY different from yours. Please consider TAKING THE REINS and sharing a bit of your good fortune. Be the change.

As I continue to walk through the days that I STILL think must be someone else's life, I continue to strive to control what I can, let go of what I can't, and pay close attention to often-unnoticed details that really make a difference.

Wednesday, April 14, 2010

a bouquet for you

the earth laughs in flowers
- e e cummings

some iris - for faith, wisdom and cherished friendship

happy birthday to my very special friend reed
across the too-many miles between us
we remain connected by memories of treasured days past
and venture forth with spontan"e"ity, with ties which for"e"ver connect us
we hold the memory of "e"rin close to our hearts

arcadia, summer of 1985

everybody say birthday!

oh shoot! we lost lindsey


Tuesday, April 13, 2010


We're ready for you to sign up!
Please click on the BLOOD DONOR SIGN-UP INSTRUCTIONS link above.

SATURDAY, MAY 15, 2010
8:00AM - 2:00PM

We hope you can attend to make this a memorable event and help others who need the Gift of Life.

We encourage you to sign up as soon as possible so LifeSource can adjust staff and stations based on committed donors, so the day runs smoothly.
Eat Well. Stay Hydrated. Bring an ID.

Monday, April 12, 2010

My Best Birthday Present

Two days after my 24th birthday, I received a belated gift, wrapped in a soft pink blanket.
I had to work a bit for this gift, but she was my best birthday present - EVER!
Sarah Maureen, born at 2:53am on April 12, 1982

Sarah, you're being a bit dramatic!
Turning 28 is NOT that big of a deal!
Get a grip!

And you said you were the ONLY ONE who had to wear bows in your hair.

I believe Carrie wins the prize this time.

Just look at the dresses and party shoes!

Perhaps you could suggest this hairstyle to Meg for her wedding in August.
Oh my goodness, are you wearing a Packers sweatshirt? We should have known back then...

LOVE the Barbie doll. It's so YOU - ha ha!

Poor Sarah usually had to share a birthday cake with me. This year was no exception. Thank you for the yummy cake Sue.

Happy Birthday to US!

What I wanted most for my daughter was that she be able to soar confidently in her own sky, whatever that may be.
-Helen Claes
Keep soaring.
Love you Sarah.

Friday, April 9, 2010

Some Gifts Just Rock!

Erin's favorite subject her senior year at LT was Anatomy & Physiology. She adored this class. Bones, muscles, blood, organ systems; they all fascinated her, AND she got to dissect things! It just didn't get much better than that! Erin aspired to be a nurse someday, and this class was a step in that direction, as she hoped to use her personal experience in the cancer world to help others in the same situation. No one knows it better than one who has spent time in a hospital bed.

A few instructors simply stand in front of a class and earn a paycheck. Then there are TEACHERS! These individuals engage their students, instill a love of learning and inspire young, impressionable minds to follow their dreams. That would accurately describe LT's Anatomy & Physiology teacher. He hooked Erin and, I'm sure, many others. Class was interesting, informative and exciting. He developed a rapport with his students, teaching them not only the cold hard facts of the subject matter, but integrated life experience and relevant issues into his daily lessons, making his students eager to learn. During her senior year, Erin was often going to chemo directly after his class, and he was always understanding of her circumstances. Depending upon where she was in her cycle, she'd sometimes drag herself to that class at the end of the school day, rather winded and pale. He would ask, in concern, if she was all right. She'd tell him she was a bit pale because her hemoglobin was just 6 or 7, and assure him not to worry because she was getting a transfusion directly after school and would look ever-so-much better the next afternoon. And she did.

After graduation, he and Erin stayed in touch via email, and they also had a very special visit here in our home last fall after her brain tumor surgery.

Throughout the latter part of Erin's illness, and also since she died, this fine man has stayed in contact with me through thoughtful emails, and he recently came for a visit. We spoke openly about Erin and he described how she was in class, giving me a perspective from an area of her life I didn't see. Kids are different when they're away from home, in classrooms and in social situations. He was not afraid to talk about her, as some people hesitate to do, and I was grateful for his kind, insightful words.

He also gave me one of the most carefully chosen, thoughtful gifts I've ever received. Even the presentation was perfect, down to the lime green bow that was carefully tied around it. Thank goodness for wives who can carry out those special details :)
But first, a little background info:

Cancer is awful. The effects of cancer on the body, and the impact it has on the lives of its victims and their family members is often atrocious. The disease is difficult to deal with at any age, and when it affects a teen-ager, it does so in a way unique to that age group. Teens are at a stage of uncertainty and indecision. They often feel insecure as they struggle to figure out who they are and where they fit into the social scene and into life in general at this very critical and often tumultuous time of change - as they move away from dependence upon parents, to independence in preparation for college and living on their own. Normal teen behavior can often be that of self-consciousness and self-absorption in an attempt to figure out all of the above issues. When cancer is added to the mix - with all the fringe benefits of hair-loss from chemotherapy, burns from radiation and disfigurement and change of life-path from surgery - the challenge to be "normal" often feels insurmountable!

This is Killian Mansfield. I did a little research. Killian was diagnosed with synovial sarcoma (like Ewing's, as Erin had, another variety of the nasty bone/tissue cancers) at the age of 11. He endured a brutal year of chemo & radiation and also two major surgeries during which a piece of his affected jaw was removed. For a time, he was in remission, but in 2007 the cancer returned with tumors in his mouth and throat. He forged on through more treatment, until finally last August 2009, at the age of 16, he passed away.

That is the loathsome, medical/cancer journey of this teen. And then you have the other side of Killian - the side with the attitude and drive that wouldn't allow the cancer to define who he was.

It's that CORE that teens/people with cancer FIGHT to protect.

Killian was an accomplished musician. He began playing the violin at the age of 3, and through the years became interested in the ukulele. Through his young teen years, he traveled about the area around his home, jamming with local musicians and perfecting his skills. After spending time in the hospital during one of his more-difficult periods and knowing he was dying, a dream evolved - make a recording of songs, while playing with famous musicians, and have it benefit others with cancer. Through self-drive & determination, and with the help of family & friends, that dream became a reality.

And THIS is my fabulous gift! A copy of this awesome CD!
I had never heard of this young man prior to receiving this present. Erin's teacher was touched by Killian's story, as his drive to overcome the adversities of cancer paralleled Erin's.

Somewhere Else is the dream project of Killian Mansfield, a 15-year-old ukulele wizard from Woodstock, NY who is battling a rare form of cancer. Eclectic, uplifting, fun and funky, SOMEWHERE ELSE is a mix of songs performed by Killian with critically acclaimed singers and musicians including Dr. John, Kate Pierson, John Sebastian, Todd Rundgren and Levon and Amy Helm. Proceeds benefit the Killian Mansfield Foundation, which supports and promotes Integrative Therapies for children with cancer. Produced and engineered by Ralph Legnini (former studio sidekick for Todd Rundgren and Nile Rodgers), SOMEWHERE ELSE includes world class rock, jazz, blues, country and folk musicians doing a lot of genre hopping, (picture B-52's Kate Pierson with renowned country fiddler Jay Ungar!) There is truly something for everyone on this remarkable CD.
--Amazon Editorial Review

Please take a moment and CLICK HERE to go to the Amazon site, scroll down to read some of the reviews, and listen to the samples from the playlist. I just love his rendition of Prince's "Kiss"! The review above gives the names of the artists that leant their time and talent to make this spectacular CD. You will also see that the proceeds from the album go to an organization called HOPE & HEROES, an integrative-therapy program and a relatively new field in cancer treatment that aids the patient's ability to stay comfortable and in control while struggling with all the side-effects of cancer and conventional treatments.

To Erin's spectacular teacher - THANK YOU FOR THIS PERFECT GIFT!
I blast it in the house and dance away, as I marvel at the courage of yet another teen who has risen above the limits cancer attempts to enforce.
Check it out. You won't be disappointed.

Please click on "comments" below to see how things happen VERY unexpectedly when one reaches out. Some things are just meant to be...

Wednesday, April 7, 2010

Removing the Barrier of Grief

It seems the walk through Holy Week has ignited similar feelings in many of us grieving mothers as we continue to work to become accustomed to the fact that our children are no longer physically here. There are some common threads weaving through us as we process the concepts of suffering, resurrection and afterlife. One fellow writer's blog entry recently included beautiful words about her deep longings for her daughter's physical presence and the desire to be near her. Another expressed anger, angst and questioned the existence of God. One other has put all of her faith in the Risen Jesus, and trusts him to show her the way.

Now a member of this "elite club", I can relate to so many of their poignant words. On most given days I'm an emotional, wandering, seeking, questioning, struggling, but hopeful soul, attempting to find my way in this new existence.

For another perspective, I sometimes refer to this passage from "A Grief Observed", a book written by C S Lewis, in which he details his bereavement after his wife's death from bone cancer. I find his observations here to be quite accurate in my own personal experience.
Something quite unexpected has happened. It came this morning early. For various reasons, not in themselves at all mysterious, my heart was lighter than it had been for many weeks. For one thing, I suppose I am recovering physically from a good deal of mere exhaustion. And I'd had a very tiring but very healthy twelve hours the day before, and a sounder night's sleep; and after ten days of low-hung grey skies and motionless warm dampness, the sun was shining and there was a light breeze.

And suddenly at the very moment when, so far, I mourned H. least, I remembered her best. Indeed it was something (almost) better than memory; an instantaneous, unanswerable impression. To say it was like a meeting would be going too far. Yet there was that in it which tempts one to use those words. It was as if the lifting of the sorrow removed a barrier...

She seems to meet me everywhere. Meet is far too strong a word. I don't mean anything remotely like an apparition or a voice. I don't mean even any strikingly emotional experience at any particular moment. Rather, a sort of unobtrusive but massive sense that she is, just as much as ever, a fact to be taken into account.

It is not yet four months since Erin passed away, and my grief is still extremely raw. There is a bubbling well of emotions lying just beneath this exterior layer of stoicism. If you tap just slightly below that surface, I easily erupt. I'm still very weary, and most likely will be for a long time to come. Watching Erin face this rival for three years has taken its toll. But as Lewis suggests in the first part of the passage, exhaustion tends to make one more vulnerable to grief. I know I'm much more inclined to negative emotion when I haven't slept well, and unfortunately that is still a good deal of the time. I hope to remember how someday. And I'm very much affected by the dreary days, typically feeling so much better when the sun shines.

I agree with Lewis' words, with an affirmation that grief shrouds my happiness. It steals its way in and slyly puts a thick, opaque veil over the memory of Erin's beauty and the strength of her character. When I'm sad, it's the memory of the cancer and the effects it had on her body and her life that are making me sad. So essentially, I'm not remembering Erin.

Erin was a happy, healthy, athletic, tenacious, smart young lady. When she got sick, those traits not only remained with her, but gained intensity while fueling her with physical strength and the ability to face head-on into very scary and unfamiliar situations. Her response to nearly everything throughout those three years was one of fierce determination. And when she decided it was time to let go, she did so with grace. I'm so proud of the way she handled the unimaginable, and I'm so grateful she took charge and called the shots and never became depressed. Those memories, of her choices and character, make me happy.

Erin was only really fearful in the beginning with the initial diagnosis, because it was horrifically shocking. At that time, she was so sick and very fragile. Once a plan of attack was developed, it didn't take her long to become pretty much unflappable. Like me, she was a girl who liked a plan. I hate the memory of the fear she initially had. That memory makes me very sad, but that was the cancer revealing its ugly head causing the fear. Then Erin took the wheel and gained control. When I think of that Erin, I'm happy because that's the true Erin.

Like each grieving parent does with their own beloved child;
I SEE Erin everywhere - in the house, in the car, at Target, in snowflakes, in yellow tulips, in lime green Easter eggs, in Pillsbury crescent rolls, in Keenan...
I HEAR her in falling rain and the music of the wind chimes.
I FEEL her in poems and laughter.
I SMELL her warm, rosy cheeks when she awakened from sleep as a baby. And I smell her in the chlorine from the pool and in the stink of volleyball kneepads!

So many things evoke a sensation of her being.
Her presence is striking.

When I can strip away that weighted shroud of grief - the cancer, I REALLY SEE ERIN.
Oh my God, THERE SHE IS!!

It's like when the Lost Boy in the movie Hook is carefully examining the face of the grown up Peter Banning, carefully wiping away the painted mask of a cold and selfish person created by years of obsession with material success, because he can sense something familiar under the built up outer shell-of-a-man who is missing being present with the most important things in his life - his wife and children. (The way cancer attempts to mask a person's very essence.) The Lost Boy's face lights with recognition as he reveals the youthful spirit and eternal magic of Peter Pan, and he joyfully exclaims -"Oh, there you are Peter!"
To all of my "club" mothers out there - we need some fairy dust to make all the bad stuff disappear!

"The lifting of the sorrow does remove a barrier" as Lewis says. And that's when I do remember Erin most vividly. The smile, the drive, the courage - it was all there, before the cancer and with the cancer. THAT WAS AND ALWAYS WILL BE ERIN.

Per C S Lewis, Erin was and is most definitely "A fact to be taken into account"!

Monday, April 5, 2010


I hate to say it, but WHEW!

Things were definitely different around here yesterday. Last week was quite a walk for me, on many levels, with the anticipation of Easter without Erin weighing heavily. It really felt like the first holiday without her. We buried her two days before Christmas. Did we actually have Christmas 2009? Not sure. I just remember walking in the falling snow with Keenan the night of December 25, feeling like we were the only ones on the face of the earth (I can remember how exceptionally quiet it was.) and repeating over and over "Sleep in heavenly peace. Sleep in heavenly peace."
Silent night was sung at Erin's funeral mass.

We have always taken a photo of the kids on holidays. There is certainly a distinctive quality to yesterday's! As explained when I published the picture of Matt's birthday from January, we will have a sunflower in future photos in memory of Erin. Chris was in Minnesota for the weekend, so the football represents him.
Sarah & Matty - Easter 2010

The day really was lovely. It was spent with extended family and friends, with talking and laughing, good food and the consumption of too many jelly beans. We've always made individual Easter baskets, yes even at this age. I just couldn't do that yesterday, and instead opted for the community trough of candy on the table. That worked just fine!

The afternoon included a walk through the woods to Bronswood, where we sat under "Erin's pine" and felt the peaceful presence of her gentle spirit as we laid yellow tulips on her grave while listening to the wind chimes in the neighboring trees.

A collection of pine cones from that tree is always kept in a bowl on the table in our dining room, so for Easter we added some brightly colored eggs, including some lime green (her favorite) ones with white speckles.

Obviously nothing will EVER be the same, but the day was ok - no, it was actually REALLY ok. We all had one another, and I am growing in appreciation of that understanding as I see those who spend the holidays alone, or have families in discordant states.
We will ALWAYS be connected.

Easter 1992

Sunday, April 4, 2010

On this Easter Sunday

No one knew the name of this day;
Born quietly from deepest night,
It hid its face in light,
Demanded nothing for itself,
Opened out to offer each of us
A field of brightness that traveled ahead,
Providing in time, ground to hold our footsteps
And the light of thought to show the way.

The mind of the day draws no attention;
It dwells within the silence with elegance
To create a space for all our words,
Drawing us to listen inward and outward.

We seldom notice how each day is a holy place
Where the eucharist of the ordinary happens,
Transforming our broken fragments
Into an eternal continuity that keeps us.

Somewhere in us a dignity presides
That is more gracious than the smallness
That fuels us with fear and force,
A dignity that trusts the form a day takes.

So at the end of this day, we give thanks
For being betrothed to the unknown
And for the secret work
Through which the mind of the day
And wisdom of the soul become one.

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

True gifts are those offered without demand for attention. Rather, they sit quietly in the background and show the way without asking for anything in return. The forsythia's bloom against the barren backdrop of the woods shows birth extraordinaire. Time spent in contemplation during days of aloneness fortifies gratification in paying close attention while listening "inward and outward", for there is so much to hear if one just stops long enough.
I continue to collect my "broken fragments" bit by bit, day by day, and have faith in my "dignity", which allows me to trust and move forward with hope...

Have a blessed Easter my dear friends.

This passage, entitled The Inner History of a Day, was written by John O'Donohue (1954-2008), who also wrote the blessing I copied for St. Patrick's Day. O'Donohue, an ordained Catholic priest from County Clare Ireland, held a degree in literature and philosophical theology and is the author of several books. He has a way of combining spirit and nature into thoughts that move me deeply. I will most likely share some of his other works with you.

Thursday, April 1, 2010

Take this Cup

It's easier to be on the cross than to look up at it.

A friend said this to me over and over when Erin was sick. You have no idea how many times I said to Erin, I WANT THIS TO BE ME! I WISH I COULD TAKE THIS FROM YOU!

But she was chosen.
Take this cup.


The helplessness, the impotent frustration of not having any control whatsoever over the eventual outcome of the path of the disease, as it stalked and invaded her body, drove me wild.

Gethsemane. Agony. Stay here and watch. Why are you sleeping? Wait with me. Sweat blood.


I had to watch my child, the one who grew under my heart, the one my body nourished before and after birth, carry this heavy cross day after day because she was chosen to bear the weight. Why her? Because she could do it with grace and without complaint? Because she could teach others to conquer the paths of adversity and quell the raging storms in their lives? So she could join with all the other children who are chosen?

Most of you are not privileged to view the challenges of those in the pediatric cancer world, but the vast majority of those children/teens live most exquisitely in a state of astounding grace and acceptance. The rest of us are so busy, flailing about in an attempt to control something for our loved one who is suffering, that sometimes grace and acceptance just have to be postponed until further notice.

My witness of that world pulled me down into a chasm from which I will never fully emerge. I want to learn from all I saw, move to a path of purpose.

The dark night of the soul is a term used in many faiths, describing a time in a person's life that is marked by a sense of loneliness and desolation, where there is cause for a struggle of faith. The wounds of grief are raw and there is questioning - WHY?

I often find the need for solitude in order to sit quietly with my grief, finding value in silence, contemplation, writing, prayer - alone; feeding my spirit as I search for the promise of peace. Each person's landscape of grief is unique to them.

BECAUSE I SAID SO. Take this cup.
Solitude as fuel. Sit in the garden. Listen to God.

Understanding the possibility of becoming angry and withdrawn because few truly understand my pain, I want to find a balance between my need for time alone and the necessary integration into the spinning world where, sometimes in spite of my wish to have it otherwise, the sun does continue to rise and set, the mail is delivered, and the car needs gas.

And I truly do want to be with compassionate family and friends who lend an ear, a tissue, or a hand, often not knowing what to say, and that's all right. I don't necessarily want advice. A hand to hold is just fine. Weeping is one of the things I do best these days. It's cleansing and I often emerge renewed.

Each day is a step toward true acceptance.
Take this cup.
Not MY will, but YOURS be done.

Erin taught me to move forward, in spite of suffering, doing so until her last breath. That cognition leads me through the dark.

I tell myself to continue to have faith as I walk through this darkness of the unknown; faith that the light will shine again. I don't imagine it can ever blaze with the force it once did, but there is a pronounced sparkle on the days that I can let some of the grief go. I work through the pain of not being able to see my child, to remind myself that Erin is fine now, free from the thorns of cancer and the shackles of surgeries, chemotherapy and radiation. I know she is at peace. On the days when I can focus on the fact that she is fine more successfully, I can glimpse more promising possibilities - peace for myself.