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"

Monday, August 30, 2010

Once Upon a Time

Once upon a time there were two little girls named Sarah and Meg.
They met when they were about five years old, and instantly became best friends.
Meg lived around the corner from Sarah,
and they played at one another's houses all the time.
They had very active imaginations and could make believe they were almost anything in the world, including Victoria (the cat, not the queen) and rolls of toilet paper.
There were many sleep-overs, and Meg ALWAYS spent the night at Sarah's house because Sarah would never spend the night away from home,
even though Meg's house was just around the corner.
Perhaps she was afraid of dragons.
Perhaps there was just no place like home to her at the time.

The little girls were inseparable.

But, when the girls were only ten years old,
Meg's dad told her the family had to move to Geneva...
These girls, who were best friends, were very very sad.
How could they possibly live so far away from one another?
Many many tears were shed,
including lots from the mother of Sarah
who thought of Meg as one of her own.
This mother was very tolerant. Actually, she liked to be silly too.
What was the mother dressed as? I have no idea!
This was 1990 ~ much too long ago to remember.

Alas, Meg shouted for all the world to hear ~

Meg stayed far, far away in Switzerland, coming back to the states for occasional visits, until it was time to go to college. Each time she came home, the little girls, who were getting bigger and bigger all the time, met one another and simply picked up where they left off.
Because that's just what friends can do.

Sarah finally decided she could spend the night away from home
and attended college in Wisconsin.
Meg decided to come back and go to school in Iowa.
After college, Meg moved to Chicago
and Sarah, who was no longer afraid of dragons at all,
continued to live in Milwaukee.
And still the girls stayed in touch.
Because that's just what friends can do.

Meg tried to donate blood last May for Erin's Memorial Drive,
but was turned away due to possible exposure to Mad Cow Disease
during her years in Europe.
She commented at the end of the post, and signed
Love, Meg - your permanent house guest for much of my childhood!
Her intentions and this comment made Sarah's mother very happy.

On Saturday, a beautiful and very grown up Meg
put on a gorgeous white dress
and met a handsome prince in a black tuxedo
who waited for her at the altar of a church in Chicago.
And who had to walk down the aisle first
and make sure this was an appropriate prince?
Why, her best friend Sarah, of course!

Now, the mother of Sarah, who still thinks of Meg as one of her own,
was so happy to attend this wonderful occasion.
She wept many tears
because Meg looked so beautiful
because Meg found her perfect prince
and because she was so filled with joy that these once-little girls
who parted ways at such a tender age
are still best friends now that they are 28 years old, and not so little!

Throughout the evening, the mother watched from afar,
soaking in the magic of this special friendship
that the miles never EVER snatched away.

There were not only tears shed, but oh so much laughter

and good food and lots of wine

and of course, there was DANCING!

And this is certainly not The End, but merely the beginning of the next chapter in the story of the lives of Meg and Sarah, who are still best friends.
And the happy mother of Sarah is watching ~ giving thanks.

Tuesday, August 24, 2010

I Wish

I wish my brain did not fill in the frightful details like this.

I wish I was a woman who cared deeply about shoes and concealer.

These sentences taken from the book "Little Bee" by Chris Cleave, a fabulous novel that my book club read and discussed on Sunday night, jumped right off the page at me.

The words are spoken by Sarah, one of the book's main characters, who is struggling with an incredibly complex situation in her life resulting from a decision made during a catastrophic incident that occurred in her past. One layer of the ripple effect of this event is sitting at her kitchen table calling up the awful details of that very scene which was, in effect, the boulder heaved in the waters of her existence.

At the beginning of our discussion I grabbed my book, turned to this page, read those sentences to my friends who all know me well and said, ~ My God, this is ME!

I don't WANT to be the one who gets up at 4:30am, because once I'm awakened, my mind begins to dwell on and attempt to spin the 53 potential scenarios of the hours that lie ahead. I'm supposed to be the one living in the moment, and I really truly do... often ... but not in the wee hours.

My life would be so much easier if I was the type of girl who sat at the edge of her seat, waiting to see who Oprah's next guest was going to be. I could rest because I'd know that they'd introduce the person, name the problem, analyze and then solve it all within the hour, with the added bonus of the surprise gift under the chair. Or Dr. Phil! My gosh, I could sign up to get his newsletter online so I could be a step ahead and receive sage advice about ~ Bad Birthday or Reunion? or Are You Living a Parenting Nightmare? (If he only knew!)

I would be so much better off if I could just worry a little more about the latest trends, because I could then get absorbed in Glamour and Cosmo, or look on the Internet to see the fashions the stars are wearing. I'd carefully select the colors to complement my skin tone, (I'm a winter. I do know that much.) plan my unlimited style options for walking the dog and grocery shopping, and then go to Target (I'm cheap!) and put together "the look".
Then, maybe I could quiet my mind.

But NO. I have always been one to live with a passionate enthusiasm for things that have a bit more meat to them ~ my employment situations, coaching volleyball, caring for my child with cancer...
I'm always ALL IN.
There is typically no halfway for me. Whether the situation calls for me to dive in head first or jump in with both feet, I go IN.
My heart follows.
I find I'm becoming much more aware, and in certain cases pretty envious, of people who can remain emotionally detached from a situation. If something falls through, they can simply say,"WOW, BUMMER!", and then they move on and grab a pizza out of the freezer for dinner, turn on some mindless TV show and then lay their head on the pillow at night and sleep blissfully for a full eight hours. How does that happen? Is that an innate characteristic or a learned response? Is there some DNA floating in their system that I don't have in my genetic make-up? Is there a switch, that I could access when I find myself on the edge of emotional overload about a matter, that would allow me to just let go? I need the instruction booklet - my own personal owner's manual. I think my parents forgot to leave it with me when they passed away. They did leave some lovely photos and the "official cake plate" shown with me below, that you can also see in the posts HERE and HERE with Erin. That thing has sure seen some great miles and smiles.

Part of my problem is that I'm the product of past responsibilities ~ mothering four children (and I'm NOT a hover-mother by any stretch) and jobs that have always required a great deal of multi-tasking and detail orientation. And I was good at them! I only forgot Matt one time (left him at home when we all went to the park - he survived), didn't lose anyone else's child when I worked in the school office (actually could usually tell you the homeroom number of each student) and never once sent a team to the wrong school on the wrong day in my many years as Athletic Director.

I have a high energy level and at any given time I have, on average, 20 things floating around in my head. I like to be busy and have places to go and things to do, and for nearly thirty years (Yes Chris, it's coming soon!) I've been responsible for someone other than myself. Now, for the first time in that many years, I can go out for the day and no one needs me. (Dave is self-sufficient and Keenan is a well-trained dog with an adult-sized bladder.) I have NO idea what to do with all this freedom yet! Absolutely no clue. Most of the time I hate it!

My senses were kicked up exponentially when Erin got sick. I teetered on the edge of a cliff for three years while she was living with cancer. Each phone call concerning a scan result had the power to determine the next path my life took ~ whether we could continue on the planned course or we were forced to chart a detour route because we slammed into another road block. This unnerving uncertainty was a part of my existence every three months for three years, LONG years when you look at them in Central Scan Time. I'm having trouble coming down from that urgency level. I'm still waiting for the phone to ring, with the person on the other end of the line carrying the power to direct my next course.

Now, I'm taking baby steps into the next chapter of my life, to a future without Erin. I'm trying so hard to pave the path before me so that it reflects the depth to which she has impacted my life, the way this cancer world has now become a part of me. I want to harness this energy, and the truly-sensible thoughts swimming around in my head, and focus on smoothing the path for the so-many others who are teetering on their own personal cliffs.

I sometimes wish I could just work at Pottery Barn, come home and have dinner with Dave, walk the dog and call it a day ~ and be satisfied with the fullness of it when I lay my head down to sleep.
But it's just not me.

And concealer doesn't truly hide anything for long. It only creates a mask to wash off at night. And when I look at my reflection at the end of that long day, I can still see what I'd attempted to conceal ~ those furrows I've rightfully earned by staying up nights worrying and crying about everything I've held dear to my heart, those creases around my mouth etched by the all the wonderful times I've smiled and laughed at the joyful moments, and my personal favorites - the crows feet that spread from the corners of my eyes from squinting due to the light of the sun's rays warming me while enjoying the beauty of the great outdoors.

Oh, and by the way,
I prefer to go without shoes.

Sunday, August 22, 2010

Summer = Corn on the Cob

Don't you just love corn on the cob

fresh from the farmer's market?

it's those little things...
(summer 1992, Erin 15 months)

Tuesday, August 17, 2010

Today, On a Much Lighter Note...

Do you have a cell phone?
If so, what's your ringtone?

Are you using one of the pre-set tones from your provider,
or have you personalized it?

Does your ringtone have significance,
or is it just a random song that you like?

Post a comment below and share!

Mine used to be ~
"19th Nervous Breakdown"
by The Rolling Stones

Here it comes. Here it comes.
Here it comes. Here it comes.
Here comes your 19th nervous breakdown.

Quite appropriate and extremely necessary at the time!
Sarah & Erin agreed with my choice and helped me program it into my phone last year during a tough hospital stay. Sometimes situations call for a bit of sarcasm to break the cycle of insanity!

I recently changed, and it's now ~
"You Can't Always Get What You Want"
thanks again to The Stones

You can't always get what you want.
You can't always get what you want.
But if you try sometime
you just might find
you get what you need...

Pretty obvious reasons for this choice!

So ~ what's yours?
Don't be shy! Leave a comment.
You can be "anonymous" if you want.

Come on :)

Friday, August 13, 2010

Lost in Translation

There is a movie by this title which I've not seen, but I often think about the phrase as I try to explain the cancer life ~ Erin's cancer life ~ my cancer life with Erin ~ the depth to which I've been affected by it all. I've come to the understanding that some things just have to be experienced first-hand in order to fully comprehend them.

Not long ago, at a little social gathering with a group of friends, we all listened as one relayed an account of her personal experience with a ride she'd dared to try at Great America. She described how she'd waited in the long line that hot afternoon. Finally when it was her turn, she'd sat strapped to a seat, and was hoisted to the top of that Giant Drop Tower some 200 feet in the air. She'd waited, her fingers tightly gripping the safety bar, while trying not to look way down to the ground for that agonizing period of time as her blood pressure increased. Hyperventilation began, ensuring the desired maximum level of knot-in-the-gut apprehension before the impending drop.

Then came the actual plummet - a high speed freefall that had invited her heart to migrate to her throat, followed by the swift arrival of her stomach to keep it company. She told us how she'd stepped off the ride afterward ~ gait unsteady, fists still clenched, whole body shaking, heart pounding wildly and breath coming in gasps. We all listened to her detailed description, complete with from-the-scene facial expressions and gestures as she recreated the whole episode for us.

In spite of her thorough, animated narrative of the whole event, could I REALLY feel that ride the way she did?
No. Not even close.
I'd calmly sipped my wine and munched on some more of the delicious crackers and dip while I listened to the story.
I would've had to actually sit in that seat in order to do so.
Yes Mrs Potts, let me confirm Erin's chest CT for next Tuesday at 10:00AM, bloodwork at Noon, followed by her full-body bone scan beginning at 1:30PM. You should be out of here by, oh say 5:00PM. The ladies room? Yes, it's right next to the waiting room.

We'll talk about the results while you're sitting in the doctor's office on Friday. No, NEXT week on Friday. There are other patients ahead of Erin.

Try not to think too much about that appointment in the meantime. It doesn't help to think about it all the time.
Oh, and Mrs Potts, make sure you eat well and get some sleep. You look a little frazzled.

I don't often watch scary movies. They freak me out. But I've seen a couple in my day, with details so disgusting I'd squeezed my eyes shut and jammed my fingers in my ears in the futile attempt to keep the horrific images and sounds before me from penetrating my heightened senses. With the bile of panic rising in my throat and chills crawling up and down my spine causing the hairs on the back of my neck to stand at attention, I'd somehow survived the two hour assault on the big screen in front of me ~ an innocent spectator to a nightmarish scene of events.

If I described one of those movies to you, with each gory detail intact, you'd probably say - eeew gross or wow, that sounds creepy.
Could my detailed account of what I'd seen impact you in the same way as it would if you yourself had sat in that chair right next to me, clutching the armrest between us while staring up at that larger-than-life screen?
No. Not even close.
You would've had to sit next to me in that theater.
Mrs Potts, we are going to begin the bone marrow aspiration now.
If you want, you may stand next to Erin and hold her hand while we do so.
Ready now?

Good! No more fluid is draining. We can finally pull the chest tubes today.
If you want, Mrs Potts, you can sit right there where Erin can see you.
Oh yes, I know Mrs Potts. Most people don't realize how large and long they really are until we pull them out.
Erin is fine now. Why don't you just step out into the hall for a moment to catch your breath.

We're now going to begin radiating her scapula.
Yes Mrs Potts, I agree. That machine is enormous, and very powerful.
You may stand here with me behind the glass and watch if you'd like.
Really, you're more than welcome to do so each time we radiate all the affected areas.

Yes, of course I will stay with her.

I was recently at the Warren Dunes in Michigan, on the beach at sunset. Off in the distant southwest skies a thunderstorm brewed. I sat, mesmerized, as the clouds gradually began to churn an ominous concoction ~ an agitated meld of angry hues, blues and grays growing darker by the moment, the beginnings of a tempest, an outrage. Lightning sliced through the sky, in powerful and unpredictable bursts of violent energy. Mother Nature's powers mounted, crashed, banged. Take cover! It's coming and it's out of control!

Try as I might, I cannot adequately explain the dynamic forces, the unleashed fury of that blackening sky, so that you can really feel as though you were sitting in the sand with me that evening.
You just had to have seen that sky.
Mrs Potts, we're so sorry to tell you, but we've confirmed the biopsy results and Erin does indeed have Ewings sarcoma.
We'll need to begin the chemical assault, and in a few months we'll perform limb-salvage surgery, a hip/femur replacement.
There will be quite a few fractions of radiation also.

Oh, I have such bad news to tell you Mrs Potts. The 3-month chest CT shows a mass in her right lung. We'll need to remove the entire lower lobe to ensure we get the whole tumor. We'll begin more chemotherapy after she heals from the surgery.

Yes Mrs Potts, I'm afraid our suspicions are correct. There is indeed a tumor pressing on her brain causing the strange symptoms she's been experiencing over the past few days. We'll need to surgically remove that.

I'm SO very sorry but there has been significant bleeding into Erin's brain which has caused the inability for her to move the left side of her body. Oh yes Mrs Potts, I know. This is just awful - absolutely dreadful.

But, in that same endless sky, at the very same time the thunderstorm was raging to the south, the setting sun began to appear directly to the west. Vying for my attention, it stubbornly pushed through the clouds that attempted to stifle its entrance. Initially I didn't look too closely at it, for I was too riveted to the prominent forces of the storm, consumed, dragged into its power.

Soon, a gorgeous ball casting brilliant shades of yellows, oranges and pinks burst through, with luminous rays penetrating the surrounding darkness, light shimmering across the choppy waters. I found my body shifting to face this emergence, my focus now much more interested in this spectacular sight, awestruck by its resilience against the threatening darkness.

As the storm continued to wage its fury to the south, the staggering radiance before me began to soften over time. The tones gradually became subtler, more muted, fading to a glow on the horizon, and then gently, peacefully slipping down and becoming one with the now-calm water ~ a stunning vista of tranquility.
You simply had to see it all.

I have cancer?? I'll be OK.
Mom, I'm fine. Stop worrying.
Yes, I accept that I can no longer play volleyball.
I like coaching the setters.
It is what it is mom.
Can Keenan sleep in my bed?
Sure, I'll just do chemo after school. No problem.
I want to be a nurse.
Let's take a drive and get some ice cream.
That's OK, the kids are busy.
I have to wash my wig because my hair is coming out again.
Yes, I know things are bad, but I want to go to college.

...I'm ready for it to be over mom...
...I love you mom
it's time...

Tuesday, August 10, 2010

We Have Flowers!

YAY! We did it!

Our tallest flower is 12' 1'' high.
The leaves are 18" across.
The stems are 2" in diameter.
We've never grown sunflowers before
so I'm just amazed at the size of them!

Don't drop Sarah!

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.
~ Anne Lamott

Just look at those tiny seeds... unbelievable!
Thanks again to all who participated in the blood drive last May. You "showed up" to support a good cause!

Friday, August 6, 2010

It Starts With a Pass

Seems like so long ago...

that this relationship began.

Teammates ~ Friends

Ali, hold tight to those wonderful days together.

For your bond with Erin now goes beyond
to that special place
deep inside you
where you keep all those cherished memories.
And now move forward.
Feel her presence!

Be happy. Be well, beautiful girl.
Play hard.
Wear #8 on your sweatband and keep her in your heart.

I'm sure she still feels that perfect pass coming from you...

Wednesday, August 4, 2010

the bathroom smells like gerbils

and no one knows what this means
no one but erin

how do i get through moments like these when i'm bulldozed
***memories, light the corners of my mind***
the way we were
in this case a SMELL for crying out loud
a weird smell
sounds ridiculous to anyone else

haven't thought about those words in nine months
since November 2009
and then BAM there it was
out shopping - doing fine
a one-two punch
U of C

i can't explain it
it would take too many words and no one would get it
the effort to reenact the scene would be lost
i don't WANT to explain it
it was a THING between the two of us
between erin and me
good lord we used to laugh about it
you probably would say it is stupid
ha ha stupid

yes there are other things that only the two of us shared
lots of them
everyday everywhere
why did this one get to me

i couldn't sleep last night because I was so incredibly sad because I couldn't tell erin the bathroom smells like gerbils
YOU try it on and see how it feels

so early dark
tick tock
forget trying to sleep
LOVE coffee in the morning
HATE fosamax fridays
it's quiet
thats what nach used to say...
lazy dog hes so sweet
googling images of GERBILS
LOVE google
i actually used to have one because my parents wouldn't let me have a dog
dont think i liked it much herman
just wanted a dog
mean parents
need more coffee


I typed the above words last week, REALLY early in the morning, with the advantage of Internet images at my fingertips. Perhaps I should have hit "delete", but oh well, here you have it. (Do you know how many inappropriate images of gerbils I did decide to remove? eeeew!)

Moments like that are difficult to explain ~ overwhelming sadness, emptiness hitting with unexpected force, randomness. The sheer element of surprise just leaves no room for preparation. Rather than gutting it out, which I do really well when necessary, I chose to just leave the mall and drive home. (Last time when I was in the dentist chair for a 2-hour appointment, I was shot full of novocain with 12 instruments hanging out of my mouth, and this played over their sound system CLICK HERE. Talk about gutting it out!) I expect it will be like this for a long, long time... perhaps forever to a certain degree... at this point I don't know. I worked myself into a Bermuda Triangle of emotions when I got to the safety of home, because a strong punch like this has the potential to magnify all that is bothering me at the time, causing the intersection of WRONG and PAINFUL and JUST PLAIN CRAZY SAD. It felt good to let it out.

I chose to wallow for a good part of the day that I wrote the words above because, as I said before, and shared with you HERE, sometimes it's best to just go with it and make the puddle bigger. Sit in it. FEEL the sadness. Grief hurts, physically too. While wallowing I decided to go through some letters people sent me after Erin died, just to open the floodgates wider, and that was a successful maneuver ~ my personal addition to the ongoing deluge into Chicago's Deep Tunnel.

I found the quote below in one of the cards. I now realize that I didn't really read the words carefully at the time I received the letter because it's dated January 9, 2010 - so just three weeks after Erin passed away. I'm sure I was only PHYSICALLY present for much of that time, my mind numb, my body on some bizarre automatic-piloted directive that propelled me through those weeks, as reality slowly settled into my heart. I know I felt relief for her ~ SUCH relief for her with respect to her wish for peace. But then, after the completion of tasks, the planning and the wake and the funeral, the business of true grieving was allowed to begin ~ a new job for which my resume lists "no previous experience" with regard to the death of a child. Parents, yes. Much different category.

I think I also saw this quote recently on another blog, but I don't know exactly where, since sometimes I get lost down the Internet maze while searching for others like myself ~ the community of grievers out there in Webland. It sometimes feels good to curl up on the couch with these people when there is no one here. They all understand.

And now that I'm out of the wallowing puddle, I can say I know that special place well. That space, so vacuous when Erin died, is gradually filling with the memories of her. I find I'm weaving a new lifeline, with an intricate combination of fibers intertwining the words and events that are unique to our relationship, and it's providing a stabilizing connection from the past to the present. Its exclusivity is its strength.

Back in April, I addressed something similar in THIS POST where I talked about the pronounced presence of Erin everywhere ~ about smelling her in the chlorine of pools and in the stink of volleyball kneepads. Last week I was slapped in the bathroom at Yorktown. Today, it was Tegaderm (tape that she used to secure the tubes of her port under her clothing when she went to school) found when I cleaned a cabinet. She continues to be everywhere, and that's gut-wrenchingly GOOD, comforting, if that makes any sense at all. That is what is filling the gap and weaving the rope to which I cling. Yes, it hurts.

I'll carry this privilege for the rest of my days ~ "a glimpse of what you wear like skin" someone recently wrote to me ~ Perfect.

So Erin, that bathroom smelled like gerbils!
I just added another fiber to the rope.
I understand.

Sunday, August 1, 2010

August 2010

It's August 1st, and I just flipped the page on my wall calendar. I've been buying "Art of the Bistro" calendars featuring the work of Jennifer Garant for years. Erin and I both got a kick out of the entertaining images of the chefs, whose enjoyment of samples of their own delicacies is apparent. I bought my 2010 version last fall out of habit, pulled it from the drawer and hung it up sometime in January (I think), and have just been flipping to the next month when I'm supposed to. I don't remember ever looking through all the artwork for the year, with my mind very much on other things.

I received the email below from a friend ~ dated December 2, 2009. We were still at the hospital after that awful Black Friday, and making the necessary preparations to bring Erin HOME. I was so moved by her words ~ they are so ERIN ~ and I know I shared them at one time through one of my mass emails. Because of today's calendar picture, I must share them again.

My jaw dropped to the floor when I saw this.
The chef is even holding a bouquet of SUNFLOWERS!

"Going down this cancer road with an adult who is close to you is awful. Many of us have done it. With an adult you get to take a bus down that road. It can be filled with lots of accomplishments, friends, relatives, memories and humorous stories. There's room to change seats, room for coolers and pillows, sometimes even a bathroom to ease a long ride.

When you go down the cancer road with your child, you get to take a stroller or buggy when they are very small and have no understanding of where they are headed.

I see Erin on a motorcycle with a sidecar on this road. She can drive and make decisions as she has done. She can see what's immediately in front of her and choose her direction. She has looked great and is really cool. You and Dave and Chris and Sarah and Matt (even the dog) are in the sidecar, along for the ride that you have no control over. You have helped with directions. You've brought the jacket, the extra clothes, the volleyball equipment, food and water, everything you could think of that Erin might need. Gas is running low now. Erin is tired and you may have to drive.

Remind Erin of everything she's seen and done, of the repairs she's dealt with and of the funny characters who've crossed her path. Tell her that all the people who watched her drive by have been affected by her. They may not have run alongside her or kept up with her, but they will never forget knowing her. Tell Erin that many more will hear about her journey and be moved to act and smooth that path for future riders. You are all on a terrible stretch of road right now, but it is banked by so much love and so many prayers from so many caring people."

Oh good Lord.
Again, I think not.
Yes, I will be framing this print.