Chatting and Rebuilding

I had a chat with my friend Garcia last night.  I asked her if she had some time in the coming days, in between profiling all those serial killers of course, if she would look into my little hacker problem. She ingeniously gathers data to assist the BAU as they profile the crazies out there; is brilliant when it comes to finding things presumed "lost" to the untrained, non-techie (i.e.-me) or deemed "irretrievable" by difficult-to-understand, outsourced employees, ultimately reached after spending hours in automated-system hell.  This should be a cake walk for her.

I know she'll do her best, but Garcia is a real sweetie (kind of a pussy cat actually) and I'm not sure what that creep who stole my stuff is really like.  I can't expect the whole Team to get involved and go after the SOB.  After all, those serial killers certainly do take priority over my treasured emails.

So, I might have to chat with my friend Lisbeth.

This kind of thing just might piss her off enough
to put her over the edge.
One can only hope...

in the meantime, my new email is

mary.potts8@gmail.com

Yes, I am backing this one up.
Yes, I have a much stronger password that will be changed more frequently.
Yes, my blog is backed up.
Yes, the experts can get into this stuff if they really want to anyway.
Nothing is safe anymore.

I've started from scratch and have been rebuilding my contact list.

A few sentimental souls have kept some correspondences we've had

and have forwarded them to me.

I'm deeply grateful.
Please, keep sending what you have,
and forward this post on to others.
thank you
xo

P.S.  If you were a recipient of my Spain adventure email, perhaps you should change your password too.
Just in case.

Hacked

My email account was hacked into last night.  Perhaps some of you received a message from me with the innocent subject line "Hi".  Upon opening it you were told I was in Spain, I lost my baggage and passport, and I needed money.

I am not in Spain.  My baggage is in the closet.  I don't have a passport.

I don't need money.  I need all the emails that were wiped out.

EVERYTHING is gone.
Everyone in my contact list - gone.
Every email in my inbox, drafts, sent, spam, trash - gone.
All my precious emails from dear friends who wrote such beautiful words while Erin was sick and after she died - gone.
All of my emails from Erin - gone.
All of the IM's Erin and I shared and I'd saved - gone.

I simply don't understand how anyone could do something like this.

I spent HOURS trying to get a real live person on the phone to help me.  I was finally told nothing could be done.

I can't receive any emails, so if anyone has tried to contact me, it hasn't come through.  I'll have to create a new email account.  I don't even know anyone's email address.

Life is way too hard.

Merry Christmas

here's to family
those present and those held in cherished memory

with sunflowers and touches of lime 

our "official" new member
and, of course, beloved furry beasts

hope your day was filled
with lots and lots of LOVE

sleep

in heavenly peace, my sweet beautiful girl

thank you, lisa leonard designs

angel of God

it's snowing

What a gift it was to awaken this morning to the wispy flakes falling silently from the gray skies, forming a blanket to fortify the shaky ground upon which I'm walking these days.

Erin loved snow.   Loved it.

Those of you who knew her know this about her, and those who've been stopping here from time to time most likely have come to understand it as well.

One of my most vivid memories is from late January of 2007.  Erin had been diagnosed just before Christmas 2006, had completed her first couple cycles of chemo and was feeling fabulous because the drugs were killing the cancer cells that had been making her so very sick.  This was pre-tumor removal surgery time and we often walked at night in the frigid air, both of us needing the fresh, germ-free slap the crisp outdoors provided as we each adjusted to the respective confinements the treatment protocol forced upon our once carefree lives. The darkness provided a comforting veil for Erin, hiding a 16-year-old's self-conscious insecurity about the emergence of the shiny head that had been covered by thick locks since the day she was born.

On this particular evening as we ran into the backyard she shoved me, completely catching me off-guard, and I landed in a heap, surprised.  Laughing.  She plopped to the ground next to me and said, "Let's make snow angels."  I can look at that patch in the backyard at this very moment and clearly see the imprint of those angels as if we just walked in the door now after making them.

angel of God, my guardian dear

Yes, Erin loved snow...   The surrounding community knew that as well.

I pulled a very special box out of the cabinet this morning.

When we brought Erin home from the hospital two years ago, 

the school family that had supported us for three years gave her a remarkable gift.  

Every child, from the preschool through the eighth grade, cut paper snowflakes.

Each one unique.

They came in all shapes, sizes and colors.

More than 500 snowflakes.

Some simple and white.

Others intricate and detailed.

Some held spirited announcements.

Others proclaimed important messages.

Some were decorated with bright colors.  Wishes for happiness.

Others held the promise of prayer and pledges to go forth.

Help for those in need.

Yes Teresa, we were enveloped in a winter wonderland of love.

Erin and I had sat and read each one.
Little by little, I had begun to hang some on the walls of her downstairs bedroom.
We didn't have the chance to hang them all...

On December 22nd, they lined the walls of the funeral home. 

Again, the work of the community's hands. 

I remember children coming through the line.

"Mrs Potts, did you see my snowflake? It's on the wall over there. 

 Do you like it?   Did Erin like it?"

Yes. Yes. Yes.
Erin loved them.

I loved them then.

I love them just as much now.  Maybe even more if that's possible.

I remember that they hung from the Christmas trees on the altar 

of the church on December 23rd.

Alison and Jen sang "For Good" and John sang "Silent NIght".

such an extraordinary and blessed gift

then and now

thank you, all of you, dear friends

I don't know if you understand how much I cherish these treasures

and all the letters and emails that came then

and continue to arrive these days

there is marked depth to the written word that

is borne of emotion and allowed to flow freely

a precious gift

 received with profound gratitude

~ ~ ~

angel of God, my guardian dear ...
ever this day, be at my side

to light and guard,

to rule and guide

in hiding

professed intentions of purpose and thought-filled actions and failure and swimming cancer cells and hyperventilation and corn bags and clementines and snowflakes and chocolate ensure splattered on a wall and a volleyball player who was so damn good and biopsies and pine cones and plaster dust and chicken tenders and bags of ugly orange doxorubicin and twinkle lights and chemo farts and gratitude and brain bleeds and project linus tie blankets and oxygen tanks and sprays of red berries and benadryl and commercialism and ambivalence and facebook and wheelchairs and strands of snowflake lights in a bedroom with an empty bed and an ambulance ride in the middle of the night and a wee christmas tree from a bit of earth in vermont and a turkey baster and countless tumors and the phone stopped ringing and rivers of tears and the smell of chlorine and bald heads and a finger lap counter-30 flippin laps! and atrophied leg muscles and a stunning letter dated may 2010 -xo and needles and a silky golden boy and refrigerators in living rooms and #8 and sleepless nights and rain machines and deep-seated anger and diffusion and confusion and saline flushes and pictionary and bombed out platelet counts and a kid who was never sick and a recliner and a school backpack still packed and my lip is numb, your lip is what and 15-18-23 and i have been changed for good and paralyzing grief and regrets and the overwhelming desire to disappear and a poem in my inbox

Be infinitessimal under that sky, a creature
even the sailing hawk misses, a wraith
among the rocks where the mist parts slowly.
Recall the way mere mortals are overwhelmed
by circumstance, how great reputations
dissolve with infirmity and how you,
in particular, live a hairsbreadth from losing
everyone you hold dear.

Then, look back down the path as if seeing
your past and then south over the hazy blue
coast as if present to a wide future.
Remember the way you are all possibilities
you can see and how you live best
as an appreciator of horizons,
whether you reach them or not.

Admit that once you have got up
from your chair and opened the door,
once you have walked out into the clean air
toward that edge and taken the path up high
beyond the ordinary, you have become
the privileged and the pilgrim,
the one who will tell the story
and the one, coming back
from the mountain,
who helped to make it.

Mameen
-- David Whyte
from River Flow

A Few Bits and Pieces

If you're one of the kind folks who checks in here on a regular basis, you've most likely noticed I've not been posting often as of late. I've recently received a few "are you ok?" emails, much like I did while I was still in the narcoleptic phase of post-surgical recovery last April. Yes, I'm here and I'm OK. Thank you for your concern.

On one hand I've been incredibly busy with my new job/s. Beginning employment in a new area (in healthcare as opposed to a school system/athletics where I'd spent years in my before-cancer-invaded-my-whole-world life, where I was quite comfortable and confident) has involved many hours over the past few months with my brain directed toward the absorption of a mountain of new materials and the task of familiarizing myself with the procedures and flows of several departments.

I'm grateful for the opportunities afforded by the managers of these various areas of the hospital, and I'm gradually settling into a routine that provides a welcome balance of physical activity (from my therapy pool instruction where I benefit from the restorative effects of exercise in warm water as much as the members of my classes do), the brain-power challenge of computer technology and the complex insurance world (@&*#) and the opportunity to have face-to-face contact with patients and their families.

Admittedly, on occasion, I've been nervous and overwhelmed.  OK, pretty much exhausted and scared shitless here and there!  It's both exciting and unnerving to begin life again at my "mature" age and to balance that with the time I continue to feel is personally necessary to grieve. If I deny myself that proportional time, I find "Erin" oozing out in an undesirable fashion rather than finding her spirit through purposeful living and the respect of honoring her wishes. Have fun.  Yes lovey.

Someone who walks a path similar to mine recently said, "It often requires so much energy to get through the day at work with a smile on my face, and when I walk out the door I can finally let down.  I usually cry the whole way home from work in the safety of my car, and then put the smile back on for my younger son when I get home."

I've had comparable experiences.  Because I couldn't return to my former place of employment, where everyone knew my circumstances and there was an established comfort level, I've had to start from square one.  I would create a potentially awkward environment if I were to walk into each new department and say, "Hi there. I'm the new girl, and by the way, my daughter died.  It was terrible.  Still is.  It's coming up on two years now and I'm working very hard to stay out of the treacherous hole this time of year invites me to crawl in."  I've confided in a few individuals and the word is spreading, so it's getting a little easier, but I still have to consciously keep myself in check. It's not always easy, so that tension has to go somewhere and it has often been poured out in this space.

I'm trying hard not to do that because I led you down that road with me last year. There's no need for me to take you again.

A few posts ago, I wrote about the threatening descent this time of year invites.  My circumstances now are different than those of last November-December.  A year ago, while unemployed, I allowed myself the luxury of wallowing neck deep through the first anniversary. I curled up with my blanket and wrote a lot during that time. I'm glad I did. The tangible pain that's very evident in those posts which I typed while sinking into the agonizing memories of those days, often hour by hour, was a requisite process that enabled me to move in a forward direction after turning the calendar page to January 2011.

This year, I'm making an effort to diffuse the concentration of the pain of those memories by focusing outward on the things in my life that I've found to be purposeful and positive, as I continually remind myself of the sound advice that one should remember and not relive the experiences. Embrace Erin, and separate her from the grief associated with the results of a disease outside the realm of our control. I have been fairly successful thus far, due in part to the receptive venue provided by my employment situation in combination with some other events.

Tomorrow, I'll be volunteering with the Bear Necessities Pediatric Cancer Foundation and making ornaments with current pediatric cancer patients at one of the Chicago hospitals.  I'm looking forward to rolling up my sleeves and getting paint spatters on my face with the little sweethearts whose radiant lights will shine through their energetic and optimistic personalities.  Those qualities can be extremely contagious!  Thank goodness.

Also, there has been an abundant response to my mention of Katherine's Project Linus endeavor. Donations, both monetary and purchased fabric, have arrived in my mailbox and in bags by my front door.

Check it out Katherine!

just a few

They've arrived from ~ family members ~ neighbors ~ my friends ~ Erin's friends ~ the Purdue University Volleyball and Women's Hoops teams ~ Sarah's friends ~ Girl Scout Troops from St Cletus who gathered to actually make the blankets so they could fully experience and therefore understand the true intention of the activity ~ a beautiful letter enveloping a check that came all the way from California from a reader of my blog whose only son passed away from sarcoma; a young man who'd been wrapped in a warm refuge of his own to soften the harsh florescent backdrop while serving chemo/hospital time ~ another one, made by the loving hands of a mother whose son also died from Ewings and is buried near Erin at Bronswood, we met one day... the Lord provides in amazing ways.

Project Linus, which is really not my project at all, but rather Katherine's, has been a totally unexpected blessing from which I've reaped immeasurable bounty. My deep gratitude extends to one and all.

Last month I had my six-month post kidney donation checkup.  I am pleased to report that I'm the picture of health.  I'm even happier to tell you that Jim is doing fine.  He is down to one lab draw each week, (from three) all his levels are good, there are no signs of rejection and he has gained back some much-needed weight.

I've recently added a new fashion accessory to my wardrobe in the form of a little button with this message.

This is a new interest I've started to pursue.

Yeah, I know. There she goes!
First blood, now body parts, right?

Froedtert Hospital in Milwaukee, where Jim and I had our surgeries, has begun a support group that invites organ recipients, hopeful people on national transplant lists... waiting, individuals on dialysis... waiting, and caregivers to gather together on a regular basis. Meetings are facilitated by social workers and the topics vary, based on requests of those involved. A week ago, the topic centered on exploring the possibility of living donations. I desperately wanted to go to the meeting, to listen to and talk with those in attendance, some of whom are considering the testing process to be a living donor to a relative or friend.  The meeting was held on a weeknight, and I'd been at work all day and couldn't drive to Milwaukee.  The social workers were kind enough to conference call me in and I was able to share my positive experience with the 50 individuals who had gathered. THAT was pretty weird!  It was strange to speak through the phone to a group without having the benefit of eye-contact, facial expression and body language to key into.

Through the social workers, I have made myself available for phone calls to answer questions and relate my experiences to those considering living donation.  They've also encouraged Jim to soon begin mentoring those who are in "waiting-mode".  I think the two of us together could be an effective one-two punch of advocacy for this below the radar situation.  According to the Organ Procurement and Transplant Network, there are over 96,000 people in the US on the waiting list for a kidney!  I'm exploring the various ways to become involved, at Froedtert and locally, because it was truly a piece of cake on my part.  Not kidding!

Back to the topic of blood donations. Thank you to those who continue to offer a pint on a regular basis.  I can't tell you how much it means to receive a simple email or text message - "Donated in memory of Erin today. Thinking of her. Thinking of you."  I can close my eyes and see her sitting in a chair pre-transfusion, pale and tired.  I can see her cheeks pink up and her eyes brighten and her energy level increase as that gift some kind soul had sat a few minutes to give coursed through her.  Keep donating, everyone.  You're making a HUGE difference in the lives of others who desperately need you.

One other thing I want to mention in this post is the link down near the bottom of my sidebar To E Love Saysee. When Erin was a little girl, she began to call Sarah "Saysee".  I have no idea how or why it started, but the nickname stuck through the years.  

The link takes you to Sarah's Tumblr - a series of photos. Once you're there, the sentence under the title explains her intention. If you're so inclined, take a peek.

If you knew Erin in person, or have gotten to know her through my posts, you will see her in the majority of photos in the Tumblr.  I took the one above of some treasures that still sit on Erin's dresser, and you will see one of those objects mirrored in a couple of Sarah's choices.  This new space has been a source of enlightenment, comfort, tears and laughter for me as I read a story about my two daughters told from Sarah's perspective. 

Well, I certainly said a lot! What began as " a FEW bits and pieces" turned into quite the novel here! It's been a while and I had a number of things to share with you. Again, thanks for your concern. I'm certainly entering into the dark months and it's good to have you all there. Now... it's time for me to get ready to go to that job I mentioned above.

I hope all of you have a wonderful Thanksgiving. The owner of my Milwaukee kidney and his wife will be among those who gather around our table. Their daughter, her husband and this fabulous beast will join our immediate family as well.  Keenan is so excited that Finn is coming!

May we all count our blessings on that day.

PS - please take a moment today to say a prayer or think a positive thought for my blog friend Robin. You've most likely read her comments after some of my posts. Her son Josh died by suicide three years ago, and today she is undergoing breast cancer surgery. She is a newly ordained Pastor in the Presbyterian Church, a brilliant individual and gifted writer.
Thank you.

holding you

with deep respect, we honor the memory of Kelli O'Laughlin

as she is laid to rest today

and we hold her loving family close to us 

during this time of profound heartache

knowing firsthand how we gained strength

through the love and unity of this same community
with ribbons bound in solidarity

embracing us during our own time of sorrow

~ ~ ~

descending

What We Want

What we want
is never simple.
We move among the things
we thought we wanted:
a face, a room, an open book
and these things bear our names—
now they want us.

But what we want appears
in dreams, wearing disguises.
We fall past,
holding out our arms
and in the morning
our arms ache.

We don't remember the dream,
but the dream remembers us.
It is there all day
as an animal is there
under the table,
as the stars are there
even in full sun.
--Linda Pastan

The treacherous season has arrived and I'm feeling the onset of the descent; the path upon which I set foot five years ago this very weekend. Mild concern that transitioned into confusion, then snowballed into sheer panic and eventually converged on December 15 with a diagnosis. A sentence. A death sentence that wouldn't register at the time. It couldn't... then. Determinations from the white coats who had peered into microscopes in a cold lab, scrutinizing slides holding slices of tissue - small round blue cells with their scant neoplasm, a translocation between chromosomes 11 and 22. What?
Then, survival rates. Statistics. A prognosis.

Three years later, and ironically again at this time of year, those hellishly despotic cells that stealthily avoided our earnest wage of chemical, physical and radiologic warfare made a clear declaration that they had gained the upper hand over my ever-optomstic and spirited last born, stripping her from my grasp and leaving a vacuous space that cannot be filled by anyone or anything. She is irreplaceable.

empty chair AlanPee

I move about the days looking perfectly normal, smiling even, while searching for bandaids and therapeutic repair of my spent character. Some efforts work for a time, the palliative respites of which I grew intimately familiar as I watched them work their magic and spell my daughter's physical distress time and again for three long years.   Salve and some breathing space.  Amen.

Other attempts fall miserably short, and as I work to crawl back out of holes, often results of my shovel's sharpened blade, I'm reminded to perhaps lower my expectations of not only the general population, but of my own self as well.

Why engage in the descent?  I still need to.  Walk away, you say?  Can't.
Just curl up on the couch with your blanket, Mary. Stay there. You're so tired from all the effort. Sleep.
But those dreams are there...

And I'm confused by them.  I can't have what I desperately want, and so it comes down to settling for alternatives that don't add up. I was comforted by the absolute fact for years that 1 + 1 + 1 +1 was equal to 4. Now, I find myself shaken by the basic principles of subtraction. I used to love math, but no one took the time to explain the reason that 1 would be taken away from 4, and I'd be left with only 3.
I've developed an aversion to odd numbers.

I was once more than just the mother of Erin, but when the ground swallowed her it took nearly everything defining me with it.

who the hell am i

The Little Things Really Are The BIG THINGS

I've come to know a young lady through email correspondence. Her thoughtfulness and level of wisdom extends beyond her years ~ a portion of her insight acquired through personal experience with a loved one and the rest due to the innate sensitivity and acumen of which I recently wrote; that which finds its home inside certain vibrant and ambitious young souls.  (I included part of an email toward the bottom of THIS POST nearly a year ago. Scroll way down to the Project Linus graphic and take a few moments to read the simple words that pack the punch of an understanding many struggle to achieve.)

Katherine is from our community. She played volleyball for a time, and that is where her path crossed Erin's some years ago. She is a graduate of the University of Iowa and is now working toward a degree as a Child Life Specialist - an individual who works in pediatrics departments to assist patients and families as they cope with serious illnesses and trauma. We had the good fortune of meeting a few of those enthusiastic individuals during our own time spent in the hospitals here in Chicago.

She is organizing and directing the Project Linus Event in Iowa.

In her words ~

For the third year in a row, I am heading up the University of Iowa's very own Project Linus event. Project Linus, as most of you already know, is a national non-profit whose mission is to provide warmth and security to children facing adversity. On Friday, December 2nd (let's all face the fact that, yes, December is right around the corner)  University of Iowa faculty, students and community members will come together for one day and make tied fleece blankets. The blankets will be donated to pediatric patients at the University of Iowa Children's Hospital (both trauma patients in the ER and inpatients fighting cancer, cystic fibrosis and other life-threatening illnesses). I am so very proud of what we've been able to accomplish in the last two years and can't wait to see how successful we are this year.
(last year they made179!)

I know it feels early to be thinking about the holiday season, but please consider making a contribution to this worthy cause. I wish I could explain how incredible it is to bring the blankets to the hospital and see the kids (and their parents) light up. A local news station aired a story about this event last year in which the broadcaster said, "sometimes the little things really are the big things."
That sums it up perfectly.

Yes, it does.

This photo was taken at home, but both blankets had been made for Erin by volleyball team members, and they accompanied her on trips to the hospital whenever she was admitted for chemo and/or surgeries.  I had one, also, that had been made by a class of 2nd graders "to keep Mrs Potts warm and cozy". It did.  Still does...

Katherine suggests donations in the form of

• Checks 

You can make them out to me, Mary Potts, and mail them to ~
     825 S Stone Ave
     La Grange, IL 60525
I will, in turn, forward them to Katherine.
Cash works too.
These donations will be used to buy fleece.
The average blanket costs between $25-35 to make.

• Material (more work, but lots of fun!):

For one blanket, purchase two (2) cuts of fleece, 1.5 yards each
-one with a pattern suitable for a child/adolescent
-one with a solid color that matches or compliments the pattern

Suggested places to shop - JoAnn Fabric, Hobby Lobby and WalMart all sell fleece.
If you do go to JoAnn, never go without a coupon! Coupons can be found in the Sunday paper and on their website.
Check out THIS LINK to see some of the great fabric choices!

Fabric can be dropped at my house and I will take it to Katherine's parents' home where she will pick it up.  Please mail check/drop off donations before Thanksgiving so I can make sure Katherine has them by the Friday, December 2nd assembly date in Iowa.

This is a pretty easy way to make a BIG difference in the life of a sick child. Perhaps teachers and coaches could ask for $1 from their students/team members, and the efforts of each class/team could buy the fabric for one blanket. Add them up - that's a lot of blankets!

Individuals who are out shopping can swing buy a store and choose some really cool fabrics. Think about patterns and colors that would make your own kids happy.  Even better, let your kids go with you and choose the fabrics.

Oooooh - I just found the graphic below.  It's a Girl Scout patch!  What a great project for a Troop.

And the J is topped with a sunflower.  

How about that!

I think I have to go shopping!!!

Homeostasis?

At a recent TCF meeting we talked about the lack of understanding and/or support from friends and family members (immediate and extended) in the wakes of the deaths of our children, a recurring theme in discussions; a pronounced concern for the newly bereaved as well as for those of us who are moving farther away from the date of our children's passings.

As parents, we're always seated in the spot up front, the driver's seat. Although we wore the safety belts of responsibility at the time of our children's deaths (by illness, accident, suicide...), the impact of that collision hit us head-on, forcefully launching us through the windshield. Those carefully buckled belts of security somehow gave way, admonishing us with further evidence that we were not in control of so many things in spite of our earnest care of those blessings we brought into this world and worked diligently to care for.  Now, in the aftermath, we walk though life attempting to make peace with the awful images of long-term sicknesses that stole our children piece-by-piece, or pictures of a sudden, violent death that have forever embedded themselves in our heads, accompanied by running dialogues of regret/guilt over should-haves - countered by - stop! it does no good to go there  over things past.

Move on!!   It doesn't work that way.  I'm sorry.  It doesn't all just go away. Peace is elusive because everything changes. Reread Death Barged In  in my recent post.  BANG!

We're making determined efforts to find new paths in an unexpected, detoured life while facing the ever-present GAPING HOLES where our children should be  - sunflowers instead of a healthy 20-year-old beauty in a bridesmaid's dress...
erin #8  on sweatbands rather than "Assists, Service Aces and Digs" listed in the Box Scores of some University under "Potts, Erin, Jr, class of 2013"...

We're assaulted by empty chairs everywhere we look.
Instead, we find our children in cemeteries, names boldly etched in marble grave markers.

The practice of staying in the present moment to road-block the painful memories of the past isn't always easy, because present moments are often underscored by the absence of our child.  So, where does that leave us?  In a state of an exhausting discipline of restructured thought patterns, SO very thankful for the gestures of sunflowers, erin #8 sweatbands, etc and in need of ongoing support and understanding from those around us because life will be a never-ending series of those gaping holes.

That doesn't always happen, and our pain is exacerbated by the lack of understanding of our struggle to move forward in spite of our sadness - the lack of willingness to acknowledge our pain, with the underlying thought that perhaps we should be better by now - the lack of considerate appreciation of the plain and simple fact that a huge part of us died along with our children and we will never ever ever be the same in spite of the fact that we appear to be "normal" on the outside.

Certain individuals have a greater level of understanding than others; perhaps due to a personal experience that has offered a paralleled glimpse into our world.
(Cancer? No, she has eyebrows!)

Some have the wisdom of years coupled with a long-held bond of friendship, a maturity that invites a sense of confidence; where a tender, sympathetic heart inspires creative energy to flow through one's fingers to gift us with tangible evidence of love and an alliance across the miles between.

Maybe it's a genetic component that predisposes some with an innate ability to think on this plane; a vibrancy of youth driven by an internal sensitivity and an awareness of and appreciation for the blessings of good health and the opportunities of a life ahead; a willingness and initiative taken to share an important message with whomever is randomly touched on a particular day.

Or the coach and members of the local volleyball family who remember a young girl whose time was abruptly cut short, and they take time to recognize her and support research in the hope that someday this disease won't take others.  Please see Patch.com for last night's event.


All these people are among the saving graces in our lives.

So, what about those who don't get it?  Those who don't call anymore... or worse, never did.  I'll bite my cheeks and stifle my fingers to refrain from sharing details. Through my own experience and a gained perspective through listening to the stories recounted by others in my shoes, I know it is due to a multitude of reasons:  a lack of understanding, the fear of many things, embarrassment, self-absorption, the choice to not "go there", one's own hectic life taking priority...  a multitude of reasons.  I often think... well, I won't say.

Someone recently told me it's due to homeostasis.
Huh?  Hmmmm

~ the tendency of a system, especially the physiological system of higher animals, to maintain stability, owing to the coordinated response of its parts to any situation or stimulus that would tend to disturb its normal condition or function.

Think about it.   A disturbance of normal conditions.  The need to maintain stability, balance, normalcy.

The death of a loved one, especially a child, catastrophically disrupts the normal "system" - and you can define that system on narrow terms as one's own personal self where one fights one's own demons, or broaden it to define the system of the family unit including immediate and extended members or widen it even more to encompass the whole community that knew the individual who died.

By the laws of nature, a system wants to remain in balance and works steadily to do so.  So the people who act as though nothing has happened or those unable or unwilling to speak our children's names or those that are "just complete idiots" (not my words, well maybe), are simply nature's way of providing the counter balance to right the scale that has dipped dramatically - its tray holding the overwhelming weight of sadness due to the loved one's death, along with the many individuals who climb in to provide faithful support.

In order to bring the system back into homeostatic equilibrium where it is "meant to be", these folks kindly assume the role of the opposing force.
Everyone has a purpose.

It's an interesting thought to begin your Wednesday morning!

the traces of suffering

And then something happened. It's hard to believe, it's such a sad day. At around five I went down to Madame Michel's loge (I mean Renee's loge) with Kakuro because he wanted to get some of her clothes to take them to the hospital morgue. He rang at our door and asked Maman if he could speak to me. But I had guessed it would be him, I was already there. Of course I wanted to go with him. We took the elevator down, not speaking. He looked very tired, more tired than sad, and I thought, That is what suffering looks like on a wise face. It's not apparent; it just leaves traces that make you look very very tired. Do I look tired, too?

excerpt from "The Elegance of the Hedgehog"
- Muriel Barbery

thanks dory

the song is now in my head too
she's such a wise one

Instrusion

Death Barged In

by Kathleen Sheeder Bonanno

In his Russian greatcoat

slamming open the door

with an unpardonable bang,

and he has been here ever since.

He changes everything,

rearranges the furniture,

his hand hovers

by the phone;

he will answer now, he says;

he will be the answer.

Tonight he sits down to dinner

at the head of the table

as we eat, mute;

later, he climbs into bed

between us.

Even as I sit here,

he stands behind me

clamping two

colossal hands on my shoulders

and bends down

and whispers to my neck, 

From now on, 

you write about me.

flagrancy, an atrocity
nothing vague - nothing subtle
can you feel it
distinctly tactile to some - obscure, vague to others

taste it, metallic
touch the blatant intrusion, the unwelcome invasion
BANG
make yourself comfortable
settle in to stay
how dare you enter this space
ignore it and it will leave... 
if only

control over every part of the routine of daily existence
insidious, street-smart
order, is there order left, any semblance
altered, taken, snatched from grasp
wandering in circles - in the house, in the woods, at bronswood
will it ever return
no, just longings for things that will never be
ever

sinking under the weight - oppressive, stifling
feeling the breath
palpable, manifest
i'm freezing
the hairs on my nape disturbed... forever disturbed
i'm writing

I AM writing!
DAMN YOU

in a spirit of letting go...

When Erin was a senior in high school, I decided to take a part-time job. It was the fall of 2008, and as she began the new school year she was characteristically undaunted by the adjusted schedule that coordinated with her 5-day/every third week after school chemotherapy protocol, which included the fringe benefits of a monthly (pre-neulasta-boost) tanked white count and a bombed hemoglobin level pallor that even expert make-up application couldn't hide. Stop worrying mom! Yes dear.

So, to give myself a semblance of outward focus, I accepted a job that was ten minutes away. Rather than staring at the clock all day until it was time to pick her up and take her to chemo/for a transfusion/home, with my mind spinning all the potential scenarios of allowing her to leave the house-bubble of safety, I steeled myself and released her into the germ-infested halls of the school, where she drank from the water fountains where students spit gum and I still don't even want to think about what else, and where she limped up and down three flights of steps in the damn flip flops she insisted on wearing, adamantly refusing an elevator pass.
(She never got sick and she never fell on those stairs.)
let her go...

My place of employment was owned and operated by the Congregation of St Joseph, the Sisters of the Catholic order that taught at many of our local schools. You can read about their business HERE at Ministry of the Arts if you're so inclined. The Sisters compose music, write poetry and prayers, draw and paint... The products are beautiful, and they're sold in the gift shop on the premises, through a mail-order catalog and via the internet.

I found this card one day as I was familiarizing myself with some of the products. The verbiage, so appropriate, stopped me in my tracks.  I felt as though it had been written just for me.

Blessing - Pat Bergen, CSJ
Art - Mary Southard, CSJ

I bought the card, took it home, kept it with me and read it constantly, pleading with God to "bless this woman".  Bless ME!  Oh God, I beg you to bless exhausted, terrified, pitiful me. Help me know what to do. She's not leaving me today. Not yet. But she's eventually going to.  I know that.  Help me to know what to do.  How to do the unthinkable. Help me to let go of her.  That's ridiculous!  How can I possibly let go of my daughter?  "Breathe new life in her".  Get me through the day.  Or more challenging, get me through the darkness of night after night after night.  Oh God, those nights.  Help me breathe, Period!

I did let go. I had to.  I rested for a while after because I took comfort in the overwhelming relief that she'd finally been graced with well-deserved peace.  The suffering was over.  I was carried by the adrenaline rush of gratitude for that peace.

I'd finally packed the card away among others received from thoughtful people over time - three years of struggle and then death and then the after.  So many extraordinary cards.  Boxes of them.  Scores of handwritten notes from adults, teens and children.  Treasures I'll keep forever.

While recently rummaging through one of the boxes in search of something else, I unearthed it. I'm thankful, for I find myself in need of its messages again.

Strong emotions in the here and now are causing me to feel tipped in many directions ~ the wedding, the deaths of other children we met along the cancer road, the beginning of a new school year coupled with the many  if only  scenarios and the accompanying deep sadness playing in my head about what Erin should be doing now... "be with her now as she opens her hands", a variety of potential job situations and some resulting uncertainty about what I really want, what's truly best while putting the pieces of a new life together... "whispers of new voices and new learnings".  Who am I now?

It's so complicated. I still can't let go.  I don't want to let go.
My gratitude for her peace has waned, or rather, it's countered by frustration over what I can't have.  Everything blew up.
I want my old life back.

in a spirit of letting go...
don't i get to keep something?
there are so many times when the "cherished memories" simply aren't enough to fight off the chill of grief that courses through my veins, yet those same memories are what drive me forward on certain days
again, so complicated

to what do i cling when i enter the gates...

PS - please take a moment and visit Robin's blog here to read the Suscipe and her accompanying words of wisdom. Robin's beloved son died by suicide three years ago.

It's SO not easy.

That word means WHAT?????

How extensive is your vocabulary?

Wanna get hooked on something productive while sitting at your computer?

Would you like to challenge yourself AND do good unto others at the same time?

** CLICK HERE **

Once you become really proficient in the English Vocabulary category, click on "Change Subjects" and dare to have your brain picked in other areas.  You can master the full list of Chemical Symbols, learn a few words in a Foreign Language, memorize all the World Capitals...

How many grains of rice were donated on your behalf?
Isn't this fun???

Time

time elapses differently for the bereaved

it often creeps

lime caterpillar at bronswood

as we sense the rest of the world rushing past us

we move slowly and purposefully through our days

with pronounced awareness of the fragility of life

and the significance of living in the moment

20 months today...

Keep Your Mouth Shut and Wear Beige

Words of advice for the mother of the groom.
Actually, pretty sound advice for most folks when it comes to wedding preparation.
Let the bride and groom do their thing!

And I absolutely agree ~ ~ ~ with the exception of the beige part.

I don't do beige very well.

As the big day approached, people repeatedly said - You must be SO busy getting ready for the wedding! What are you doing about "this" or have you taken care of "that" or aren't you worried about "this thing" and who is going to take care of "that other detail"?  

Seriously people?? My response continued to be ~

Gosh, I'm not really doing much of anything because it's not my wedding.

Dave and I had our day 31 years ago.

This is Chris and Tasha's day.

A day they've been planning and saving for.

A day that needs to be their own.

They should choose exactly what they want.  They're responsible adults.

I'm going to buy a pretty dress, a shawl to wear in church
some high heeled shoes, 

(and I'll practice walking in them!) 

and I'm going to go to our son's wedding.

But what about the rehearsal dinner?  How will you take care of that detail?

That's the responsibility of the groom's parents!

OK.  Settle down now.  

Chris and Tasha looked at a few places and chose one they liked.

The Claddagh Irish Pub
 - casual - fun -

No, we've not seen the place.  It's in Minnesota.

What's the big deal?  We trust them.

The food was delicious ~

corned beef and cabbage rolls and chicken/spinach melt sandwiches 

and huge onion rings coated in bass ale batter...

Plenty to drink.

A patio for the guys to have a cigar smoke afterwards.

See, no worries.

And bonus, I got to spend some time with all my handsome boys.

a group of guys who've been buddies for many years

  through grammar school and high school days and seasons of sports 

Prom 1999

young men who, during a few post-college years, 

played together on a fledgling softball team 

and often spent hours on our old wrap-around porch

And at the reception, the friend chosen to be the best man gave a pitch perfect toast that alternately poked fun at and honored Chris, with words that included remembrances of hours spent on that old front porch... growing boys whose bellies had been filled with my mom's breakfast twisters on high school late-arrival days, the ever-present jug of red Hi-C in the fridge... his toast bringing back some fond memories of my own.

SO... How did I do without Erin there? Pretty well, I think.
Was I able to see anything but that pronouced gaping hole defined by her absence?
Yes. There was beauty and love and joy and class and compassion and understanding.
A beginning, with two individuals joining as one.
Was I split in two? Yes.  Equally happy about this blessed union and broken-hearted that Erin was not there to share in the joy.
Did I cry? Yes, for a lot of reasons as the many parts of me collided.
Did I smile and laugh and dance like crazy in my bare feet?  Absolutely yes!

I missed her when the FAMILY photos were taken before the ceremony while I clutched the sunflower, filled with both happiness in the knowledge that our family was about to expand to include new members and at the same time literally sick to my stomach because she wasn't standing on that altar with us.

As the photographer took pictures of the wedding party, I wondered where she would have stood among the other bridesmaids, knowing how beautiful she would have looked in a plum dress. A perfect color for her.  A color she loved. As each couple processed down the aisle once the ceremony began, I wondered which handsome groomsman would have accompanied her.

And then when Sarah told me after the service that she had quietly said "eeeeeewwwwwww" when Chris and Tasha had kissed, I imagined the two of them cracking up on the altar had she been up there too, and it made me laugh.

The parts of me colliding...

But, because she wasn't there, she was there in the sunflower I clutched, in the gorgeous bouquet standing prominently on the altar that was then carried to a memory table at the reception, in the lime green ties the groomsmen wore and the lime table runners at the reception, in the sunglasses the bridal party sported when they arrived at the reception after a "happy" ride on the bus from the church... and in the "Have Fun" tag by Lisa Leonard that adorned Tasha's bouquet (clicking on photo will enlarge it).

She wasn't there... but she was there, in the only way she could be.

Chris and Tasha beautifully and selflessly integrated her memory 

into their special day.

Remember, I just showed up. They planned it all.

I am so lucky to be the mother-in-law of this bright, confident young woman who walked into Chris' life at a time when our world was already upside down, yet she never turned in fear from the challenges accompanying Erin's cancer and her subsequent passing.  I'm so grateful she knew Erin, and therefore can consciously carry her into the future and keep her memory alive.  She is unafraid to speak her name, and she does so while calling up humorous incidents they shared and can also vocalize a sympathetic understanding about our ongoing pain due to her absence.  Is it an accident that she is a radiation oncology therapist?  Chris didn't meet her at the hospital during one of Erin's treatments.  They met through mutual friends.  I continue to believe some things are not accidents.

The couple was poised and gracious and relaxed - before, during and after.  Tasha looked like a princess who had walked out of a fairy tale.  Chris looked pretty good too.

I did worry about one little detail.  One of the straps on my dress was a bit loose, and I was concerned about a "Janet Jackson" incident during the mother-son dance.  Not to worry.  Sarah, who had just gotten off the "happy" bus ride from the church, assured me she could secure the strap to my bra with bobby pins.  There were no safety pins to be found and she had about 95 bobby pins holding her hair up.

Would you trust this "happy" girl in the glasses with your dress?

Mom, I've got this!  It will be fine!  Why do you doubt me?
Gee honey, I don't know!

We chose Forever Young - the Rod Stewart version.  (Many people don't know Bob Dylan did it before Stewart.)  If you're familiar with it, you know it has a kick-ass rhythm.

The straps didn't budge.  No wardrobe malfunction.
I promised the "happy" daughter I would not doubt her again.

Did you ever really listen to the words of the song?  Most people just rock along with the music, singing - da da da da, Forever Young - Forever Young.
I think you'll agree, the lyrics are pretty appropriate.

May the good Lord be with you
Down every road you roam
And may sunshine and happiness
surround you when you're far from home
And may you grow to be proud
Dignified and true
And do unto others
As you'd have done to you
Be courageous and be brave
And in my heart you'll always stay
Forever Young

May good fortune be with you
May your guiding light be strong
Build a stairway to heaven
with a prince or a vagabond

And may you never love in vain
and in my heart you will remain
Forever Young

And when you finally fly away
I'll be hoping that I served you well
For all the wisdom of a lifetime
No one can ever tell

But whatever road you choose
I'm right behind you, win or lose
Forever Young

Yep, simply perfect.
~ ~ ~

PS - Of course Keenan traveled with us.
He got to hang out at my cousin's house in MN with their dog and five kids.

He had trouble staying awake in the car on the way home - a happy, pooped out pooch!