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, June 28, 2010

Unthinkable

I was the Athletic Director of St. Cletus School for ten years, and had retired from that position just before Erin was diagnosed with cancer, and continued to hold the secretarial position in the school office until December of 2006. The Athletic Board and my coaches were a fine group of men and women with whom I had established a relationship of mutual respect, all of us with the same ultimate goal in mind ~ to provide the best possible sports experience for the boys & girls in 5th-8th grades while at St Cletus, and to give those with the ability to play at the high school level the tools of readiness to begin that next step.

The position held many responsibilities, but what I liked most was the constant interaction with the kids, their parents, my coaches and referees; those associations that built the foundation of many of the relationships I maintain to this day. To heck with the scheduling, budgets and mountain of paperwork!


I'd like to introduce my extended family, including that very special friend to so many of us, scrunched on the right side of the picture above and rockin' with the boys below, who always reminded us ~ "It's a great day to be a Cardinal!"


We sure knew how to make The Barn one loud and happy place!


I like to think that Nancy and her "Er Bear" are doing some good rockin' together these days...

The basketball coaches were a very special group, and I soon found the easiest way to make "my men" happy was to give them gym time - the hot commodity in our school, with a facility that was not only the practice venue for sports but also the site of many other parish functions. Coaches turn to mush when the big game is on the horizon and you hold some extra hours of available practice time in your hand in front of them. It's a beautiful thing!


Gosh darn it, St. Johns is winning AGAIN! Hmmmmm... I wonder if some calls might go our way during the second half if I get these Stripes some donuts to go with their coffee. Dennis? Wayne? What do you say?


Seriously though, I absolutely loved my job.

The communication with many of these people, with whom I had very regular contact, shifted to email correspondence when Erin got sick. Gradually, this became my link to the outside world from which I had to disengage, as I went from a job in a very busy setting where I spoke with countless people each day, to the isolation of both staying at home and also spending weeks in the hospital with Erin during the required in-patient hospital chemotherapy sessions.

I CRAVED conversation. The emails helped fill the void a bit and, without realizing it, they were also becoming a valuable journal, as I chronicled the events of the time to those in the outside world while I was struggling to navigate my new existence in the Land of cancer. Reading words now that I wrote early on is often an eye-opening experience.

I've not always been terribly organized in my storage of these emails, however. Some are in categorized folders I created over the years, in the attempt to separate them into more manageable piles, much like the pieces of paper on the kitchen counter that graduate from the heap of - I can't get rid of this because it's really important, or it might be important sometime in the future, so I'll put it here!

Others remain strewn about my inbox, as though the wind blew through an open window and with one gust hurled them about in random fashion. At the moment I have 700 emails in my inbox and just as many in my outbox, so apparently I have some organizing and purging to do! I know. I can't help it. People keep writing such lovely things, and this continues to somewhat bridge the chasm that still isolates me as I work to establish my footing in the Land of Normal, with my compass still spinning, seeking direction. I think I know what I want. I just don't know how to get there.

When I delve into that scattered lot I often find gems, and recently found one that I sent as a thank-you to those sweet basketball coaches who had tucked a card in my mailbox when Erin first got sick; a note of support, signed by all those great guys, that also included a gift certificate for a massage ~ one of my favorite pleasures in the world.

I gulped my way through, as I read my words ~ so filled with resolve, so naive of what was to come, so filled with hope of triumph after surmounting what we confidently tried to look at as a speed bump under the pumped-up tires of our determined vehicle that would carry us to the future...

Dated January 25, 2007, six weeks after Erin's diagnosis.

Dear Coaches,

You guys sure know how to treat a girl right! A massage sounds like heaven. A perfect gift. I've told Erin many times that it may be her body going through all this, but I carried her for nine months and gave birth to her, so I feel as though I'm going through it as well.

Thank you all so very much. I find email to be a very impersonal way to convey a message like this (you can tell how old I am now!) but with so many of you to contact I guess it's the most efficient.

We woke up on December 15 to learn Erin's/our lives had changed forever. The why me?/why us? may some day become clear. Erin was told by her doctors that the average life-expectancy of a woman is now 82 years, and this is one year of her life to give so she can have the rest.

But when you are 15 years of age it sucks to get cancer - you are stuck in the hospital for 14 sessions of chemo. You will have surgery and radiation, the extent of which is still to be determined. Your beautiful, long, thick hair falls out in handfuls, You can't go to school - you must be tutored. You can't play volleyball, your passion.

Ands here's the best part - you get to spend quality time with your mom day in and day out!

In spite of all that fun stuff, Erin is one tough girl. She is the youngest of four children, the exclamation point at the end of our family. She has the resilience of youth and the physical and mental strength of a trained athlete to help her through. She has no fear of doctors, tests, machines or needles.

She will win this battle. The alternative is unthinkable and unacceptable.

A friend of mine, whose husband is a cancer survivor, sent me a note with this saying on the front of the card -
"The world is round and the place which may seem like the end may also be the beginning."

Indeed...

In gratitude and with love,
Mary





"The alternative
is unthinkable
and unacceptable."







indeed




Wednesday, June 23, 2010

A Matter of Perspective

On this rainy (AGAIN!) morning, I was thinking back over the past 3 1/2 years, beginning with Erin's diagnosis and progressing through today, amazed to see how my thought patterns and hopes changed during that time-span. I guess it's all a matter of perspective, with adjustment of goals reflective of the situation at hand.

In the beginning I desperately hoped
~ the doctors somehow made a horrible mistake and she didn't really have cancer
~ she would fall into the percentage of Ewing's patients with promising survival rates, because it was the much greater percentage due to the comprehensive plan of attack (I no longer put much stock in percentages)
~ she would physically and emotionally withstand the initial aggressive treatment protocol
~ she would cope with the fact that her surgery meant the end of her ability to play competitive volleyball, and she would find a new passion



~ she would develop the tools needed to navigate her very-abnormal adolescent life, and those learned skills would carry her through the years to come
~ after the ten months of treatment she would be cured and have to go back to the hospital only for periodic scans
~ life would get back to sort-of normal, whatever that was going to be, and she'd run wherever her heart took her and find happiness

When she relapsed by her three-month scans and the initial shock began to settle somewhat, I hoped
~ she would be able to recover and regroup after her very-quick relapse, and then would have the ability to do so each subsequent time the disease progressed
~ she would be able to continue to transition back and forth, from the cancer world to the normal world, without missing too many beats (that's a really hard thing to do because as they say, "the beat goes on")


~ she would feel well enough, often enough and long enough, to grab a whole lot of life within the time she had
~ people would see HER, rather than the disease and its effects



~ her body could continue to physically tolerate the surgeries, chemotherapy drugs and radiation treatments that seemed to be mounting into absurdly intolerable quantities


~ God would see fit to perform a miracle and cure her, even though I couldn't give Him a reason why He should cure my child as opposed to all the other sick children whose desperate mothers were asking for the same miracle - I constantly begged anyway
When reality came crashing down, I hoped
~ her pain would always be controlled quickly
~ she would not be afraid



~ she would be with us as long as possible, and we would understand when it was time to let go and not try to keep her longer for our own selfish reasons
~ her passing would be peaceful and everyone would be with her

Now, my hopes are
~ that I will continue to be grateful for and have the ability to focus on what I was blessed to have, even if it was only for a short eighteen years, as opposed to what I now don't have
~ that I will see joy in the little things



~ that I will be positively impacted by the way she lived her life and have the ability to share that with others
~ that I will eventually find my way

Friday, June 18, 2010

"YOPP!"

Because Erin's death six months ago today rocked my world, I selfishly want the earth to noticeably shift somehow due to her absence, even though she didn't really weigh all that much. Perhaps that listing motion I continue to feel is only personally discernible, due to the gravitational pull of my heavy heart ~ a tidal bulge of grief.

I ask for just a few moments of your time; moments spent in recognition of Erin's life and, in turn, the lives of all those whose worlds have been affected by cancer. Most likely, the majority of you know someone who has, or at one time had, an unsolicited personal relationship with the disease. Perhaps if we join together in the same "space" we can cause a noticeable shift, maybe not in Mother Earth, but in awareness, with acknowledgement of all those challenged to stare down this potentially-lethal adversary.

In this quest I'm reminded of Dr. Seuss' story, "Horton Hears a Who". With his highly-sensitive elephant ears, only Horton is able to hear the voices of the tiny Whos crying for help, desperate because their world has fallen apart. Alas, no one else can hear them. All in Whoville are implored by the mayor to yell as loudly as possible, with the hope that if this act is done in unison their small voices can be heard. They begin to make a great racket: hollering, and banging drums, and blowing horns and still they are not heard. A thorough search of the town is conducted, and at last "One Shirker, quite hidden away in the Fairfax Apartments, Apartment 12-J" is discovered. This silent "young twerp" is carried to the top of the tower, and when strongly urged to yell with the rest of the community, clears his throat and simply shouts ~ "YOPP"!

With the addition of that one tiny "YOPP", their voices finally ring out loud and clear. Lo and behold, those in charge of making decisions finally hear them. Their whole world is "saved by the smallest of all".

Has a nice ring to it, doesn't it?

Today, I'm asking for a collective "YOPP".

LIVESTRONG Action has a dedication book that salutes those whose lives have been touched by cancer, with the intention of increasing awareness about the need to take action against this disease that affects so many. Last night, I designed a page for Erin. Hers is one of nearly 50,000 pages, each created with love by family and friends of those whose lives have been touched by this disease.

I received this response ~
"LIVESTRONG Action will send this dedication book, with your signatures, to world leaders and pressure them to make cancer a priority in their own countries. It's our best chance to push for better treatment, more funding for cancer research and access to care for everyone around the world."

One of Erin's volleyball teammates had erin #8 Livestrong bracelets made for friends and our family members in December of 2006 when she was initially diagnosed with Ewing's sarcoma.
I haven't taken mine off since.



LiveStrong has now ended this dedication campaign.
Thanks so much to those of you who participated.

Please, take a moment to click on ~


This link will connect you to her personal page, where you can add your name to the list of those willing to acknowledge the memory of Erin and others like her, all who have been taken from us too soon. Your name will also show your willingness to stand in strong support, honoring those who continue to LIVE daily with the challenges of this disease as they desperately hope for a cure.

I also ask you to kindly spread the word by forwarding the link to my blog so this information reaches as many as possible. Thank you.

Perhaps the cumulative effect of all our signatures will carry enough weight to cause my desired blip in the earth's movement. It's worth a try.




I REALLY REALLY HATE CANCER.

Six months...


Wednesday, June 16, 2010

With a Little Care, HOPE Grows

Remember these?


We handed them out to all generous donors
HERE AT THE BLOOD DRIVE.

With a little care,

look what's growing in my garden.

HOPE



“It's such an act of optimism to get through a day and enjoy it and laugh and do all that without thinking about death. What spirit human beings have!”

"I don't sweat the small stuff. When somebody says you have cancer, you realize it's all small stuff. If it weren't for the downside, everyone would want to have it... But there is a downside."

~ Spoken by comedienne Gilda Radner, who was one of the original cast members of Saturday Night Live. She died at the age of 42 from ovarian cancer.

Monday, June 14, 2010

It's An Honor

Erin wandered onto the volleyball court at the age of three as Sarah began competing, played on her first team with fifth graders at Lions Juniors-1st Alliance Volleyball Club when she was in third grade #8 below and never looked back.


After playing at the beginning levels for a couple of years, the coaches assessed her skills and understanding of the game, and as a result of those evaluations determined her future as a setter, and she began her training for that position at the age of eleven.

Erin immediately fell in love with that role, as it afforded her the ability to be involved in every play on the court. She was incredibly competitive from the start, and this position allowed her to play a key role in determining the success of each play. For those of you who aren't as familiar with volleyball, the setter is much like the quarterback on a football team; the position that holds a key role in directing the offense of the team.


She continued as the team setter each year until the age of fifteen when she was diagnosed with cancer. Due to the hip/partial femur replacement surgery (click for history) as part of her treatment protocol, she was no longer able to play competitively, at which point in order to stay involved with the sport that was her passion, she began coaching.

Throughout the years, Erin trained and competed with many players. Among her FAMILY (more volleyball info) of talented athletes was Jill, another setter, with whom she played in Ft Lauderdale in July of 2006 at the High Performance Competition where this photo was taken.


Yesterday evening, Dave and I attended the team party and awards night for the 1st Alliance Club, where we were invited to present the

FIRST ANNUAL ERIN POTTS SETTERS AWARD

to this year's deserving recipient, the same ~

JILL PALUCH!


Our family is humbled by this incredible memorial honor that will be given each year to a deserving senior setter, and grateful to the Volleyball Club, to its owner Sue Keck & all of the coaches, and especially to Melissa pictured above (great with her first child now!) who was Erin's setting coach and also her team's 14's coach when they medaled in Salt Lake City in 2005.


Jill currently sets for the 18 Silver team and has earned many fine accolades through the years while setting for her Lions/1st Alliance teams and also for her Nazareth Academy High School team. She will continue her career next year at the University of Akron in Ohio, where she has earned her college scholarship.

How Awesome! CONGRATULATIONS JILL!
We wish you the best as you jump to the next level of your successful volleyball career.

Melissa, always a great motivator, gave Erin a copy of the below list of expectations, as she began to assume the responsibilities of her position. To this day, the words hang on her bedroom wall.
The Role of the Setter

Without a doubt, a team that is led by its setter will have the best chance of reaching its full potential as a TEAM. Your position as setter carries with it more responsibilities than any other position on the court, period.
Among them are the following:

~ Take responsibility and assume accountability for the success of your hitters.
~ Don’t demand a perfect pass in order to deliver a hittable set.
~ Do, however, stress the importance of an “in-system” pass. (“in-system” – within an area that allows you to set various hitters effectively)
~ Voice your desire to set various positions to keep your opponent off balance.
~ Know your hitters' strengths and highlight them.
~ Know your hitters' weaknesses and keep from setting a weakness when the game situation calls for high percentage opportunities.
~ Stay late or arrive early to work on your setting skills.
~ Offer to stay late or arrive early to work with hitters on strengthening the more challenging parts of their game.
~ Be clear on the goals and expectations of your coach, of you and the team.
~ Be vocal, the game commands communication.
~ Embrace your leadership role.
I'm a firm believer that many of the qualities learned as a team player in a sport translate in a broader aspect to help direct a person's life ~ the development of self-expectations, the ability to respect and relate to others in the many avenues of life, the stamina to push harder when things become challenging, the sustained focus on personally determined goals and the confidence to voice a strong-held opinion.

Erin took the above list of responsibilities very seriously in her role as setter, and many of those same basic attributes ultimately translated to and enabled her to LIVE with cancer for three years, where she chose to assume the leadership role.

In essence, just like the setter on a court must do ~ she took whatever was given to her - the on-the-mark passes & digs, and those that had her scrambling all over the court ~ and, fueled with well-developed tenacity, always did the best she could.

Friday, June 11, 2010

A Little Piece of her Carried Forth

I took the photo below last June 13th, so almost exactly one year ago today. Erin is holding my brother's granddaughter, so I think that makes these girls first cousins once removed. I always get mixed up with correct generational terminology!

This precious baby was six weeks old at the time, and our family had gathered in celebration of Erin's graduation from high school, for a little pre-party the day before the big bash. This allowed us special visiting time, including the opportunity to eat this little doll up without having to share her with so many others the next day.
I just love this picture of these two beauties ~
a little one asleep, peacefully content,
as the older one looks over her, cradling with care.
Were a few secrets shared?



As I absorb this image of Erin, I see
~ long, slender fingers, with nails still manicured from the previous week's prom
~ cheeks not swollen from steroids (a side-effect she detested)
~ a healthy complexion with a hint of the summer's glow beginning
~ the tiny freckles on her nose
~ a six-month growth of shiny brown hair that the then-current chemo had allowed her to keep for a time
~ dark, defined brows
~ and one of my absolute favorite features - her sweeping thick eyelashes

Staring at the picture now, I'm filled with such intense hope that a little piece of her is somehow carried forth into everyone she touched, through the life she lived for eighteen short years; before AND with cancer. That thought, of her sustained presence in some form, settles my heart these days.

I'm so much more aware of how each generation thrives, nurtured by the love of family and friends. Isn't it wonderful?
(I got to munch this doll recently and she is just delicious!)
Can you remember the smell of your baby? I sure can, all four of them.



I have to share some more pictures I snapped during our recent visit, just because they make me happy!

Keenan, do you think I need a pedicure? My feet are getting a little grubby because I don't like wearing my shoes. Don't tell my mom!


They're coming to get me for a nap soon. Quick, pick me up and take me somewhere to hide! I'm not going to look over there, but you take a peek. Does anyone see us?


"Who loves ya baby!"

Tuesday, June 8, 2010

What's in Your Glass?

"How heavy is this glass of water?"

Perhaps you are familiar with the story of the professor of a stress management class who stands before his students holding a glass of water, and then asks how heavy that glass is. They shout out answers, guessing a wide range of estimated weights. The professor laughs, and then informs the class that the absolute weight doesn't matter. What's important is how long the glass is held.
"If I hold it for a minute, that's not a problem.
If I hold it for an hour, I'll have an ache in my arm.
If I hold it all day, you'll have to call an ambulance.
In each case, it's the same weight,
but the longer I hold it the heavier it becomes."

This story was used to illustrate the burden of long-held stress, followed by the advice to put the glass down for a while to give oneself a break before the weight of it all becomes too heavy to bear, with the gentle reminder ~
"Don't worry, it will be there when you come back."

When Erin was undergoing treatment at Loyola, a very wise one there reminded me of the tale, and used it to illustrate the burden of holding the glass of cancer. She pulled this story out of a pocket that ran deep with experience in dealing with surviving the emotional torture of cancer-the-disease. She was so good at diffusing the mind games that living with cancer so consistently imposes upon its victims. On the one hand, there were the cold hard facts of the disease; what it was doing to Erin physically, the treatment that was required, side-effects, etc. But topping those unavoidable certainties were the crazy mind races that threatened our sanity, as we were constantly tempted to venture into the land of what-if, where the list of things I worried about was a mile long. And so often, it was the mind game of "Does this symptom mean something or nothing, or will she get sick when her counts bomb?" that made my arm ache faster than the list of concrete facts.

This person reminded me that life could not be all Ewing's sarcoma. Yes, Erin was sick. Yes, she had to go to chemo - a LOT. But, I was urged to look at everything else that was out there in the world. By participating fully in the mind torture of single-focused cancer insanity, I was robbing myself of living in and enjoying the moment, and today's moments will eventually become tomorrow's memories. Did I want to look back on the days and picture only the disease and the treatment? No, I REALLY didn't. So I slowly learned to put the weighted glass down for a spell, let some of the worry go and focus on the good that was before me. And there was SO MUCH good!


Living day-to-day in spite of the fact that cancer had the potential to begin crawling through Erin again at any time, or going into a state of near-denial once it actually did progress in order to grab all the good stuff out there anyway, became the goal. She looks darn good in the prom picture above. There was "stuff" going on that few knew about. Fooled you!

There were many times though, when fear took over, and I began flapping in all-out panic mode. Because this wise one had worked in the crazy cancer world for nearly thirty years, she'd acquired the confidence to be able to walk up to me and say, "Mary, give me the glass. I will hold it for you. Just give it to me. I'll take the responsibility for a short time." At times, the act of putting down the glass through my own free-will was too overwhelming, so it was a relief to be able to release just a teeny bit of the burden into her capable hands, and I relaxed a little in the comfort of knowing it was taken and then held by someone who cared so deeply for my child. It was still faithfully there after my brief respite.

As Erin grew bolder in her cancer-world surroundings, she developed the ability to pick it up herself, or absolutely insisted on taking it from me in certain situations. It's an amazing and humbling thing to witness your child gaining the confidence to cheat a bit, and take a few small sips out of the glass of such an intimidating foe, in the attempt to lighten the absolute weight you have to hold.
Shhh - no one's looking!

Things changed dramatically last December, and I now walk while holding the glass of grief. The contents of this glass have a different consistency than the child-with-cancer one. The glass I held when Erin was sick usually became heavier within a shorter period of time because it was always a cocktail blend of the two of us. Because she was my child, I struggled to lift her burdens and fears as well as my own. In spite of her insistence to hold some herself or the willingness of others to take some on, I know I constantly stealth-carried her on some level, unable to help myself, with my innate mother-instinct never fully suppressed. It's just what moms do. There are no longer two of us suffering. It's only me, and I'm willing to take that on knowing she's at peace, and that fact actually lightens the initial absolute weight of the glass somewhat.

My grief glass is an intoxicating blend of memories ~ the beautiful and the ugly. I work hard to swirl the liquid so that the beauty rises to the top and the loathsome particles sink naturally to the bottom due to their overwhelming density. Unfortunately, much of the ugliness is clinging with stubborn buoyancy to the surface because that is what the most-recent memories of Erin look like ~ the disease having its way with her physically. I will carry ALL of it with me for the rest of my days. It will NEVER go away. I don't want it to. I just hope the freshness of the physical effects of the disease softens with time ~ to allow me to see Erin's health and beauty in shining prominence, with enough traces of ugliness left to allow understanding of, empathy toward and continued desire to help others in my shoes.

Because my glass no longer carries the unrelenting anxiety or the but-I-need-to-carry-Erin ingredients, I have a somewhat easier time setting it down and walking away for short periods of time. I wrote a post in March that details some of the contents of the glass in my hand. Click on To Wait is Often Harder for the recipe, though there are a few secret ingredients I will only divulge to certain family members:)

In that post I mentioned my new-found ability to become blissfully numb in situations. Little by little, I'm learning protection mechanisms that work for me to alleviate the suffocating sadness on the more challenging days. I'm also getting really good at plastering a smile on my face in social settings and telling people I'M FINE, when I sometimes have the really overwhelming urge to say SHITTY THANKS! And you? I can hide in the house with the best of them when necessary, but I really do try very hard to get out there and engage in life. I think I've done pretty well so far.

Due to my rather unique situation, I present a challenge to some who don't quite know what to do with me. I get that. Being a friend to someone whose child has died and is living every parent's worst nightmare is an unfathomable and uncomfortable situation for most. It's a brave soul who has the guts to take the initiative, to walk into my crazy world and say, "Give me the glass Mary. Tell me about Erin. Talk to me about what it feels like to watch your child die. I'll listen to the good and the ugly, the pride and the terror. Or don't talk, just cry if you want. Tell me only what you want. Do you need to fall to the floor in a heap? Have at it! I'll hold your hand while you do. I'll pick up your snotty kleenex. It doesn't scare me."

I tend to be a pretty self-reliant person who has a difficult time imposing my baggage on other people, so I don't often ask for help. I swallow it down in front of others or erupt in the company of Dave. And I take a lot of walks with Keenan or bury my head in his bountiful mane. Every time I do that, I feel a little "twist" of Erin flow into me, like the kick from a glass of cold Pepsi.
I'm good here, mom.


I'm thirsty. Hit me with another sip, will you Erin?

Thursday, June 3, 2010

"When there is no wind, row."

While Erin was in the hospital after very low platelet counts caused her to bleed into her brain, the result of which was the inability for her to move the left side of her body from her shoulder down, I sent an email out to update everyone about this latest and most brutal assault on her poor little body.

At the time I was confounded by the atrocity of this event that came on the heels of the removal of a brain tumor just two weeks prior (a totally unrelated event) from which she had rallied in typical Erin-fashion by coming home three days after surgery as though nothing monumental had occurred, with her will to keep moving forward as strong as ever. I can picture her sitting on the couch after arriving home from the hospital just that morning having had the post-surgical, fashionable turban removed, eating the barbequed ribs dropped off by friends who'd shared their dinner with us, and watching the day's NFL games on TV like it was simply the traditional Sunday before Thanksgiving; where football games dominate the channels, and the house fills with the usual game day sounds ~ "What do you mean holding? I can't believe he threw another interception! That was not clipping! What a bogus call!"

Normalcy. Skewed, cancer-world normalcy.

Still shaken by the tumor's dramatic emergence after three years of the many other outrageous events faced and overcome, with its physical effects on Erin and the resulting surgery to remove it still threatening my sanity, I was not yet steadied with any sense of equilibrium when the bleed occurred just days later, on the Friday after Thanksgiving; the term "Black Friday" forever securing new meaning. I was astounded that this nightmarish event could happen, just when we thought things couldn't possibly get worse. NEWS FLASH ~ that line of thinking is so painfully NOT true!

I was beside myself, in a state of shock, exhausted. One initial reaction was to question the existence of that proverbial "open window" that is promised when God closes a door. I was gasping for air, feeling as though any avenue of a breeze had been sealed tight with weather stripping. Nothing was moving. I was suffocating from the fall-out and consumed with grief over what finally, after three years of a spirited and unyielding attitude toward this adversary, forced my daughter to say "I can't" do this anymore. Those words, "I can't" cut me to this day as I sit with the memory of this event, because I can look retrospectively now with a semblance of sanity over her life, and truly say I never heard her utter those words with that conviction during her eighteen years, including any time during the three years with cancer.

In my email I had asked people for advice, and soon after, a very perceptive friend sent this card to us. I love the image; the empty canoe, only one paddle, the calm waters that stretch to the horizon, the rocky banks, the towering trees in the distance...and the practical words.
When there is no wind, row.

Throughout that week when Erin was hospitalized, we all slowly began to come up for air. The exercise of regrouping had become a common practice during the previous three years because our hope and expectation of the course of the cancer was often heartbreakingly in conflict with its actual path, as it often took abrupt and unscheduled detours down avenues that were not of our choosing. Each time this happened, we had to let the dust of the impact of the disease again grabbing the upper hand settle, readjust our attitudes, let go of those things over which we had no control and trust that God had his plan that was not always our plan. It was hard work each time.

Often painfully during those three years I learned the sacrifice of giving over control let a tiny breeze begin to stir, because when my focus shifted from fighting the impossible (changing God's plan) to tending to the task at hand (caring for Erin in whatever way was appropriate at the time), the air gradually began to move again. When I could stop holding my breath in frustration, which often only resulted in sucking all the oxygen out of the atmosphere around me and possibly depriving others of its benefits, the surrounding air could gradually begin to follow its natural sustaining tendencies.

So, as the winds took their prevailing course, our courage and determination to "do the right" became the sturdy oars of strength fueling us to move through those final weeks. The paddles of our family boat began to row in a developed, well-honed rhythm that propelled us to take Erin from the hospital, safely home with us where she belonged, where we could offer comfort and a peaceful passage. In simplest form, what was most important at that time was for us to synchronize our paddles in the waters about her, quietly treading; being fully present with her, remaining at her side and loving her to pieces.

And, in typical Erin-fashion on her own, she ultimately chose to pick up her own oar during those last weeks and gently paddle, still directing her course as best she could through the days to her final destination. The witness of that is an INTEGRAL piece of what inspires me now as I walk this earth without her.

As I gasp for air now, on the days the winds stagnate with the all-consuming grief, it's that memory that urges me to row. If someone offers to spell me for a bit by taking charge of the paddles through words of advice or company, the respite can be a welcomed relief, knowing it's not always wise to navigate these waters by myself. Even so, there's often a preference to drift alone for a time ~ attuned to the steady panting of Keenan as we match strides over the miles (endorphins - my drug of choice) while listening to the songs of the birds, the music of the wind chimes, the splash of the rain and the rumble of thunder ~ feeling Erin in all of it through that sustained, though at times slight, movement of air.

Then, there are the days when the winds whip in fury, in attempt to blow me off course, and I have to muster the strength to row against the currents of doubt and frustration; as I look at the empty corner of the couch where she comfortably sat eating those ribs that Sunday, as Dave & I stare at the vacant chair at the dinner table wondering what else to talk about, as I will my phone to beep signaling an incoming silly text message from her, when we cut the white ribbons from the trees because they were tired, when we chose a headstone for her grave...

The above card is framed and hangs on the wall in my favorite room next to my favorite chair; where I sip my morning coffee, where I stare out the window to my garden, where I work through my crosswords, where I compose, where I cry, where I talk to God, where I gather myself, where I lace up my shoes signaling Keenan of my need to move...
Row.
Row forward because I want to.
Row.
Because Erin showed me how.

Tuesday, June 1, 2010

At Times, One Must

especially when there's a birthday involved

I know the title to the blog post I published just a week ago is "There's no Going Back". Well, I digress. There are times when it's necessary ~ and fun!

There are some special boxes from the past, that upon entrance allow me to stroll down a lane of good memories, like a Spring Break trip to Ft. Lauderdale during the summer of 1977 when I was nineteen-years-young! with my best friend. (Yes, that is a cigarette in my hand. Do NOT do as I did years ago, do as I say ~ Don't Smoke! It was a phase, and I quit 30 years ago.)

Thank goodness for these memories, for they contrast with the ones that are oh so difficult these days, create perspective and thereby enrich life to its fullest.

I met Wincie in 7th grade and she has been a part of my life ever since.


Are we gorgeous or what?!


In preparation for an evening out, I was probably working toward the Farrah Fawcett look. Not sure what Wincie had going on here! At times we used orange juice cans instead of rollers, and we ironed our hair, with a real iron on the ironing board - NOT with a fancy Chi flat iron, thank you very much. You young things are so spoiled!

Oh my gosh, it's Carole King with the guitar! I don't understand why she didn't invite me onstage last week.



I am so fortunate to say I have this great friend with whom I've shared the day-to-day challenges of the teen years, the crazy adventures of vacations, the same superb taste in music and secrets & angst about high school loves. Our alliance remained strong through the years while we followed our own individual paths through relationships, marriage, children and careers. She was there with support while Erin was sick, with presence in celebration of milestone events (Erin's graduation party, pictured below with our other buddy "Goose") and now she is here with her wacky sense of humor and compassionate warmth, helping my heart survive.




We haven't changed one darn bit.
My hair is still wild and we still can't see Wincie's eyes when she smiles.

Ha ~ not everyone can say they have a friend named Wincie!
Happy (belated) Birthday my friend!
But when you know that you've got a real friend somewhere
suddenly all the others are so much easier to bear


- Jackson Browne