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"

Wednesday, November 24, 2010

Giving Thanks

Taking some moments from the necessary tasks
on this day before the holiday 
to make a random list of some BIG things for which I am deeply grateful
and a few little things that make me happy.

~ a copy of this painting by Jean-Francois Millet, originally entitled Prayer for the Potato Crop and later named The Angelus, that was given to us by my parents nearly thirty years ago and hangs on our dining room wall

~ our daily bread

~ the smell of pine trees and damp earth

~ the "e" tattoo on my left wrist, especially now since the livestrong bracelet I'd worn since 2006 broke, and nothing ever feels like the original...

~ a 30 year marriage (it seems a rare commodity these days) that sometimes rocks and rolls with the punches that the sickness and death of a child brings (which adds more weight to those odds against us), with a man who now walks by the same empty spaces in the house with me each and every day, and with whom I share a path toward the future

~ my rain machine

~ a heated corn bag to warm my bones and settle my nerves

~ snowflakes

~ 18 years, 7 months, 4 days, 9 hours and 5 minutes of Erin

~ three all-grown-up kids who are healthy, independent and living full and happy lives, who all get along with one another and who still want to come home

~ the first sip of hot coffee in the morning

~ our modest house which we've made a comfortable home, with so many personalized nooks and crannies that make it a special place

~ flames dancing in the fireplace and casting a welcome hypnotic spell

~ other moms I've met on this path, who are living the life they wouldn't choose either, yet here we all are supporting one another

~ the sweetest dog in the whole wide world

~ music and books

~ honey crisp apples, oh my gosh have you tried them?

~ ok, McDonald's fries and mocha frappes too

~ the community that surrounds us, whose steady generosity shored us up during the most difficult times imaginable, and whose spontaneous acts of thoughtfulness continue to remind us that we're not forgotten

~ a foot rub

~ Erin's friends who invite me to be a part of their lives

~ piles of photographs, with each snapshot telling a priceless story

~ big bodies of water; the ocean, a lake

~ butt warmers in car seats

~ the journals of gratitude that Erin and I faithfully wrote in for two years

~ paint swatches; so many colors - so little time :)

~ bamboo sheets

~ Erin's eyelashes

~ family and friends who understand that I'm not who I once was and accept who I've become, who can speak Erin's name in my presence without hesitation, who cry with me and laugh with me and love me for who I am
The memory of last year's Thanksgiving;
one perfect day in so many ways,
safely tucked between a Wednesday spent at the hospital with drugs and radiation for pain control
and a Friday when the bottom dropped out before our eyes.

A day when Erin felt great, and was so beautiful and confident
and generous and helpful and happy.
A gift of a day.
A day filled with the typical antics of older brothers.

A day of love between sisters.

A day for dancing!

A perfect day...

Peace to all of you on this most beautiful of holidays.

Please take a minute to share a BIG thing for which you are grateful or a little thing that just makes you smile :)

Thursday, November 18, 2010

Calling Harry Potter Fans!

Erin was a HUGE Harry Potter fan. Much to her dismay, I never got terribly enthused about the whole thing. I know. I know!!! She, on the other hand, devoured each book... many times over. When she got sick, one of them often accompanied her to the hospital, its passages providing an avenue through which to bide time during seemingly endless hours of chemotherapy. She held a strong preference to escape to The Wizarding World as opposed to viewing the sights of the cancer world before her. Mind over matter ~ an outstanding practice.

Many discussions occurred throughout the years ~ with Sarah, her father, her cousins and certain friends who were fans as well ~ about a myriad of characters and scenes, with references to countless passages and quotes, that sometimes resulted in heated banter about the credibility of the books vs the movies.

Erin did love the movies too, viewing each of them many times, alone and in the company of other enthusiasts, all of whom had them critiqued to "thumbs up/thumbs down" summaries that even Siskel and Ebert would have appreciated.

The films eventually became a frequent part of the background hum of the hospital room or the house during times when Erin wasn't feeling well. As in the case of the books, she was able to get lost in the movie-land of Hogwarts as it offered her escape into a world of fantasy ~ an immersion into a place far away from her own pain and fear. Parallels can certainly be drawn between the evils of Lord Voldemort and those of Erin's personal nemesis. I know that in the end Harry is the victor, and it's my belief that Erin, too, retained the upper hand. Evil never took her soul.

Part One of Harry Potter and the Deathly Hallows premieres tomorrow, and I can't stop thinking about how excited she'd be to see it; I'm certain with tickets to tonight's midnight viewing at the theater near whatever college she'd now be attending.

I'm neither well-versed in the details of the stories nor terribly familiar with the traits specific to each character, but while looking through some quotes I happened upon this one that seems appropriate ~
It was, he thought, the difference between being dragged into the arena to face a battle to the death and walking into the arena with your head held high. Some people, perhaps, would say that there was little to choose between the two ways, but Dumbledore knew ~ and so do I, thought Harry, with a rush of fierce pride, and so did my parents ~ that there was all the difference in the world.

~J.K. Rowling, "Horcruxes," Harry Potter and the Half-Blood Prince, 2005
oh yeah, a HUGE difference...

Tuesday, November 16, 2010

Oh Happy Day!

As parents, we've had a lot of hopes and dreams for our children as they've gone through each stage of their lives. I could list so many points here, but I won't get into all that because it might require more words than my two previous blog posts!

Since they've left our nest though, Dave and I hope they will all continue to: remain healthy, support themselves through a fulfilling employment situation, have comprehensive insurance coverage, make good choices consistent with upstanding morals and values, and ultimately find happiness along whatever life path they decide to pursue. You know ~ grab all the good stuff out there! If their direction includes finding another person to spend the rest of their life with, then WOW ~ bonus!
Thank goodness they've all been pretty successful in the above endeavors, and I have some really exciting news to share.
The eldest recently hit the BONUS round!


Tasha and Chris began dating about three years ago, and she readily won the hearts of each of us during that time with her outgoing and vibrant personality, her confident disposition and her considerate and supportive manner throughout the challenges of the past several years.


Here's to you, Chris and Tasha!

I was just thinking about these lines from the movie "When Harry Met Sally" ~
I love that you get cold when it's 71 degrees out. I love that it takes you an hour and a half to order a sandwich. I love that you get a little crinkle above your nose when you're looking at me like I'm nuts. I love that after I spend the day with you, I can still smell your perfume on my clothes. And I love that you are the last person I want to talk to before I go to sleep at night. And it's not because I'm lonely, and it's not because it's New Year's Eve. I came here tonight because when you realize you want to spend the rest of your life with somebody, you want the rest of your life to start as soon as possible.
awww...  love just rocks!

Friday, November 12, 2010

Taking Some Deep Breaths

and changing things up a bit!
During times of stress, the pines in our back yard often provide a serene focal point while I reflect on unpleasant situations and make decisions regarding matters of importance. Such has been the case over the past few days.

It's unfortunate that "anonymous" chose to make a personal situation a public spectacle, and the inappropriate manner in which she voiced her displeasure elicited quite an outpouring of opinions ~ both in posted comments and through the emails sent by those in support who preferred to express their concern in a more private setting or, in one particular case, contained 4096 characters and exceeded the limit allowed by Blogger. Imagine that one! Over the course of the past few days, I was repeatedly drawn back to the words I wrote near the end of that post.

These days I work diligently to straddle the gap that is my existence, attempting to find balance between the world where I once so-happily lived and the life I was forced to enter almost four years ago on December 15, 2006. Much initiative is required to maintain relationships, and on many days the scale tips heavily one way more than the other. It's an ongoing learning process, an enlightenment in the natural tendencies of the human race.

Some natural tendencies of the human race presented themselves in outstanding fashion; among many, the inclination

~ to be critical and unkind when one feels threatened
~ to allow bitterness to dictate better judgment
~ to have one's protective instincts rise to the occasion
~ to rally together in support of one whose character has been attacked
~ to make the choice to remain silent
~ to focus on love

... and obviously the list could go on.

Erin's cancer diagnosis, and the world into which I was forced as a result, has caused me to be a different person in so many ways, and that is often difficult for some to understand. My life is every mother's nightmare and I can't possibly be who I once was, but I can't say that I'm disappointed or ashamed of the individual I've become. I won't bore you with a list of my character traits, both positive and negative, but I think through my writing you can get a pretty good idea, and many of you reside in the community and therefore have known me on a personal level for years. To state the obvious, my whole world changed as my mostly-tidy life that I didn't fully appreciate at the time fell apart with my daughter's cancer diagnosis. When my primary focus became Erin, my relationships with nearly everyone I knew had to change, some very dramatically, because there just was not enough of me to be distributed around any more.

Life now often presents the challenge of figuring out where I belong again, and I'm sticking my big toe out to test the waters of the world that just keeps moving whether I'm on for the ride that day or not. Most of the time it's up to me to jump into the driver's seat, but often it can be really scary, especially since I've fallen flat on my face several times in recent months under a variety of circumstances.

The events of yesterday are a prime example of the way I continue to shift my balance from one foot to the other between the two worlds I straddle, and as a result I often wind up feeling pretty weary by the day's end.

After again reading the blog comments written by family members and friends both old & new, I checked my inbox and found emails (yes, plural - she is the one who has trouble staying within Blogger's character limit) from the friend of a friend. While I've never even laid eyes on this woman and she's blessed with healthy children, she somehow GETS IT, an uncanny amount of IT. She has been a persevering voice of strength and encouragement during some of my most difficult times ~ her blog comments and emails, another hand stretched toward me in the dark... my friend from Ohio.

The words and an old photo in my post gave a friend from high school, from whom I'd not heard in quite a while, the gentle nudge she needed to finally just pick up the telephone and call me. That teary phone conversation resulted in the two of us spending yesterday together; laughing, reminiscing, updating one another about our family members and talking about Erin. This woman, with whom I'd once shared a part-time job at the corner drug store, boy troubles and my clothes, is now the mother of four, her youngest ~ a daughter, Erin's age... my dear friend.

The Prosch Pharmacy girls, summer 1975.
Finally, last night I was curled in a ball on the couch while I spoke on the phone with one of the mothers I mentioned in the post, whose daughter had been admitted earlier in the day to the hospital for pain control. And my heart just hurt as I crawled into bed holding Erin's blanket... oh God, my friend ~ who today is shuffling down that hall to that break room with that stinky microwave, while I'm home sipping my fresh coffee from my favorite mug. My friend's beautiful name? Hope...

While truly grateful for the support of everyone who "had my back" due to the comment, I've found myself sad that this unfortunate situation evolved into the prominent attraction of my blog post. My intention when I wrote it was to express my deep appreciation for the eclectic nature of the population of both the old and the new friends/acquaintances in my life.

I wanted to share the impact of those with whom I've developed relationships within the realm of the cancer world, and highlight images as they now present themselves in a way I couldn't see at the time due to my head-down-and-forge-ahead mission necessitated by Erin's needs throughout those years. That world stands in vivid contrast to the venues before those of the general population ~ the life where I once comfortably resided and developed those other cherished friendships about which I wrote; during my school days, in the bleachers of sports events, in places of employment and in the homes of the surrounding community.

I've walked in both worlds, actually still do, and I'm so blessed by the diversity of the individuals and the unique experiences of both environments that combine to make me the person I am today. I struggle to bridge the gap between these mediums of existence because while they're often in stark contrast, I'm trying to make one a complement of the other because that's where I now have to find a way to live... and be happy!

A place where, on the majority of days, the Advil of daily distractions only temporarily masks the pain caused by the removal of that part of me that was supposed to be here until I died.

A world filled with images which once looked like this

Christmas 2005

and have now become this.

Christmas 2009
Everyone is entitled to exercise their Constitutional right to Free Speech, and due to the public nature of this forum people can certainly say what they want, how they want. However, I would prefer to exercise my Pursuit of Happiness in this special blog space I've created among those who will either constructively criticize, share their own personal experiences and advice or offer hope-filled thoughts and words of love and support.

Together, let's exercise the more honorable character traits of the human race.
Thank you so much.

Monday, November 8, 2010

My Friends...

I talked to my friend the other day. My friend...
As you're growing up, you might make friends with classmates
or with the girl who lives next door.

You find common interests,
and the groups can change over time.

If you get married and have children,
you might spend time with the mothers of their friends.

You may be fortunate enough to still gather occasionally
with girls you met way back in grammar school.

Perhaps you find yourself ringing in the New Year
with some members of your community.
Friends. Acquaintances. They're everywhere.

Throughout this whole process, you latch onto some with whom you feel a certain connection, a deep-rooted camaraderie or fellowship that exists on that extra level that draws you to those individuals who become your REALLY special friends. The handful that stays with you no matter what...  even when the unthinkable happens. Isn't it wonderful to have those individuals in your life? Whatever would you do without them?
When you're the mother of a child with cancer though,
you find yourself communing with folks in the oddest places.

For instance, there's a woman across the room from you in the waiting area of Radiation Oncology. You're both sitting with girls who appear to be about the same age. Each of you has a smile plastered on your face as you chat with these young ladies, and you're flipping through the pages of magazines dated February 2001 while trying to think about something other than the fact that they're going to call these dear girls back to those rooms that house awful machines the size of garbage trucks and shove each of them inside one. And because the young lady you're sitting with is braver than you, she says ~ Mom, you don't have to come back with me anymore. I'm not scared. It doesn't hurt. I'm FINE!! ~ so you keep that beaming smile glued to your face when you'd really rather throw up right on the ugly table holding all the outdated magazines.

The minute your precious girls are led away, one right after the other, you lock eyes with this woman, and before you know it the powerful forces that emanate from the wombs of mothers who have birthed babies who go on to receive THE diagnosis pull you to seats right beside one another, and you're quickly blurting out ~ My daughter is 18. Yours too? She has metastatic sarcoma. Oh my God, yours too?! The tear ducts automatically switch to free-flow mode as you clutch one another's hands, and in those few minutes that it takes for those machines to swallow your daughters, blast them and spit them back out again you share your souls. You quickly rummage through your purses to find scraps of paper to scribble phone numbers and email addresses on, blow your noses to pretend you haven't been crying so that when your girls emerge they don't say ~ REALLY MOM? ... and you've made a friend.

Or another popular venue ~ the break room in the hospital ~ that mecca of "the regulars" that vaguely resembles your kitchen back home. The destination that breaks the trance-like state you've entered from staring at your child who's been lying in a bed with chemicals dripping into her for hours and hours and hours... hung by nurses wearing gloves and gowns to protect them from accidental contact with one drop of the poison, while you ponder the irony of ~ I consciously chose drug-free childbirth to protect her?! The room where newspapers strewn about might actually give you a clue as to what day it is. The space eventually found by dazed folks who shuffle down hallways wearing ratty T-shirts, slippers and pajama pants with elastic waists that have become the style of choice because they kindly accommodate the gain or loss of weight that accompanies the good news/bad news ride you've all been on for longer than you care to remember.

And while the normal population is still at home sleeping, you've again just risen from a bench that's maybe a foot wide and wiped crust from the side of your mouth ~ those remnants of drool that trickled out during the couple of hours when the familiar rhythmic sound of the IV pump eventually lulled you into blissful oblivion before you had to spring to attention to bar the door from the entourage of white coats trying to enter the peace of your predawn space again to question your sleeping teenager about the regularity of her bowel movements. Really? Who gives a shit at 5:32am?!

Now that your daughter has been spared the invasion, and from experience know that the precious state of serenity you'd achieved is broken and rumination will begin shortly, you've wandered down the hall to that room. While you're standing, waiting for your coffee to heat up in a microwave that stinks like blown up burritoes, in stumbles someone dressed like you. Your eyes meet, focus and you share that all-knowing glazed-over look of ~ Oh God, MY child has cancer too ~ and you sit down, begin to sip the coffee than now tastes like burritoes, and you barely notice because... you've made a friend.

You understand when the mother who called on the phone the other day says ~ Mary, I'm SO TIRED. ~ Oh God you know THAT kind of tired. The kind that results from trying to be the pillar of strength for the family for so long. The kind that gradually engulfed you like a thick fog while you attempted to take ALL the hits for your child so she didn't have to, even though you logically knew you couldn't but because you're the mother you WANTED to. The kind of tired that came from lying awake for three years while working to anticipate any danger lurking around the corner so you could intercept it before it DARED to affect her life any more than necessary.

I'm trying to let her make decisions, but I want to make sure she truly understands what will happen if she makes that choice. I know she's a young lady, an adult, but she's still my child and I want her to know how I feel, but it's her body and her life. Her life... the one that's so unlike that of her peers who are now blissfully off at college while she's home, pretty much forgotten. The life that consists of pain and drugs and machines and choices even much more complicated than ~ Should I sleep with him this weekend?

And you know, because you've watched your own daughter live that same lonely life and struggle to make those same complex decisions, the ones no one should be required to make at the age of 18. And so you listen and try to comfort your friend on the other end of the phone, and you can't say ~ everything will be fine ~ because everything is SO NOT FINE, and so you say ~ I KNOW. ~ and ~ You're a GREAT mom. ~ because she is... your friend is.

You understand when another mother, the one you met over three years ago when similar nightmares were beginning for both of you, doesn't have the energy to respond to your emails because she has recently updated her daughter's CaringBridge site after mustering the energy required to take a deep breath and spew the latest atrocities caused by the insidious brain tumor that has resided in her now-18-year-old's beautiful head. At the end of her summary, she states ~ I'm in Survival Mode ~ and you know EXACTLY what that means because that's precisely where you were a year ago.

The time beginning in August, when things began to spiral out of control quickly... downward, and now that you're a year away from it, you can view the roller coaster scene of ~ The cancer is going everywhere. but She's going to college! and We had to go for more radiation to (enter today's body part.) but We went to the state vollebyall finals with a brain tumor in her head making her lip numb and her right side weak! ~ with a clarity that didn't exist then.

Looking back, you feel a strange sense of gratitude, for without realizing it at the time you were numbed by the protective spell of a weird novocaine concoction of fear, acceptance and exhaustion ~ that awful shot of painful reality to the roof of your mouth that stings all the way up to your eyeball, but then renders you blissfully anesthetized as the drilling process, the REAL agony, begins. That insulating shield that causes you to walk around with a swollen face, an inability to eat properly and the propensity to drool all over yourself if you're not careful, that also allows you to SOMEHOW move forward with single-focused energy to do whatever it takes to make things the best they can be for your child who is going to leave you soon. You loved her more than life itself - that's how you did it all.

And she's doing this now... my friend, while I'm desperately trying to find my way in the next level of Survival Mode, where the shot is wearing off and my tongue can't help but search constantly for the missing tooth that was once there, I thought a permanent part of me, in that now-gaping hole of emptiness... my daughter, gone forever.

As the mothers of children with cancer, we've learned to perform the duties we thought only trained nurses did until our children got sick. (There should be some kind of GED equivalent to the RN degree for us.) Then we're taught to set pumps and connect bags of hydration fluids and chemotherapy drugs. We can free-hang Zofran and adjust the drop-rate with the flick of a thumb. We learn how to flush a port with saline and heparin to prevent clots and maintain good venous access. Our children's NG tubes run smoothly and we can clear a plugged catheter in the middle of the night after only a bit of mild hysteria. Proper timing of pain meds? Piece of cake! Over time, I developed a deeply personal love/hate relationship with Decadron.

And we've mastered the art of administering injections. Anyone out there need someone to give them their Neulasta shot? You know, that $3000 mega-hit in a vial that's delivered to your doorstep in a box (looks just like the package from Pottery Barn containing your new candlesticks, so be careful) by the Fed Ex man, guaranteed to boost your immune system so you can prepare for the next crash caused by your upcoming cycle of, oh say... that nasty Doxorubicin (the "red devil" that can cause heart damage) and Etoposide (watch those platelets bomb too) and Vincristine (so what if your toes are numb)? Step right up, I'll do it! No problem - No charge!
Feel free to Squeeze Erin's Teddy Bear and/or Dog.
I'm told the shot does burn,
and they both have lots of experience.

And then there are my Internet friends... and I consider them my friends even though we've not really met. In effect, we've sat across the country from one another in our own homes, sometimes at our desktops while typing purposefully with the determination to move forward and forge our new paths, and at other times while wrapped in our children's blankets curled up on the couch while pouring our grief into our laptops, wallowing in the all-consuming heartache of having watched our babies die before our eyes.

We find one another on CaringBridge and through blogs and referrals from others who have happened upon both our preaching, purging rants and our hope-filled intentions to make our children proud of the way we're still living, doing our very best to survive.

I treasure their narratives for they often articulate thoughts and lend valuable perspective when my guts are aching, my nerves are raw and my brain is straining to form a coherent sentence.  Their personal stories of stoicism give me courage and their experiences help me feel less isolated. Sometimes they write a blog comment ~ I stand with you. or ~ I remember when my daughter/son ... ~ and in the dark hell of aloneness I can feel their hands reaching for mine.

It seems our aggregate wisdom is the sum of our shredded parts, as we unite on the common ground of having given our children over to a Higher Power, never dreaming this would be asked of us. Yet here we all are, reminding one another to breathe and live in the moment.

These days I work diligently to straddle the gap that is my existence, attempting to find balance between the world where I once so-happily lived and the life I was forced to enter almost four years ago on December 15, 2006.  Much initiative is required to maintain relationships, and on many days the scale tips heavily one way more than the other.  It's an ongoing learning process, an enlightenment in the natural tendencies of the human race.

Where would I be without them ALL. My friends...

Thursday, November 4, 2010

Whatcha Doin' On Sunday Morning?

The LifeSource facility in Westmont was hopping today!
Lots of donors.
That's a really good thing.

LifeSource will be at St. Cletus
Sunday, November 7
7:30am - 12:30pm
Morrissey Hall
From parish nurse Clare Slowik in the church bulletin ~

"Blood donors are needed every day -
for critically ill patients, accident victims,
people needing surgery and those suffering from chronic illnesses.
More than 1000 are needed on a daily basis
just to meet the needs of patients in the LifeSource service.
Remember, you can make a difference in someone's life!

Please consider taking time to stop at St. Cletus on Sunday.
You'll be helping others and it will make you feel good!
Spread the word - thanks.

Tuesday, November 2, 2010

A Mass of Remembrance

This evening we will attend a Mass of Remembrance
to honor our loved ones who have gone before us.

Please pause today, to remember Erin
and all of our beloved in whatever way you feel comfortable 
~ through formal church services or while walking outside ~
~ with special thoughts, through private prayer ~

in recognition of the pain of our loss
and with gratitude for the ways
in which our lives will forever be touched by them...

We light the first candle for our sadness.

The pain of losing you is intense,
and the grief we feel is often hard to handle.
We want you to know that we miss you so much.

We light the second candle for our memories.

There is so much we remember -
your smile, your laugh, the good times and the bad ones too -
all those times that never could have been lived
with anyone but you.

We want you to know that we will always remember you.

We light the third candle for our determination.

Knowing you has brought us strength.
We are changed because of you.
Your life has made a difference in our lives.
We want you to know that we will take the energy of your living
to help us move forward in our own lives.

We light the fourth candle for our love.

The specialness that we shared with you can never be replaced.
Our love for you will always shine as brightly as this candle.
We will pass that love on to others,
and as we do, our hearts will smile because of you.
We want you to know that we will always love you.

~ with thanks to the Ministry of Care & Compassionate Care Ministry of St Cletus Parish for the above words
Feeling very much loved HERE, by my dear friend...