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!

One Word?

Simply perfect.
OK, that's two.
but, it was...

I have to get to work and my camera stinks and I don't have many good pictures. I'm putting out the APB for copies. I will share soon.

oh, just so you know
we HAD FUN!

So many thoughts swirling

June 1981

May 2006

Thanksgiving 2009

as we approach the HAPPY DAY

~ ~ ~

Fall of 1982

A Little Trick!

After having to take a few months off due to my kidney donation surgery last April, I'm again able to donate blood.

Did you know your hemoglobin level can differ

by up to a whole point from one hand to the next?

It's pretty crazy, but true!

I recently learned this little trick. Thank goodness because I had to use it when I donated last Saturday. During the screening process, my hemoglobin level was 12.3 when tested from my right hand - 2 tenths of a point below the required 12.5g/dL.  I asked them to test from my left hand, and my level was a whole point higher - 13.3.

I think it's because my "e" is on my left wrist, and I always donate from that arm :)
Yeah - success!!
I ate a steak and green salad for dinner, just to make sure to replenish.
OK, I had chocolate ice cream for dessert too.
One can never be too careful!


Per the LIFESOURCE WEBSITE there is a CRITICAL NEED for blood donations. Click on the link to read more, and please consider making a little time in your busy schedules to offer a pint. It's so easy to do, and the donation centers are nice, air-conditioned environments in which to spend an hour during the current heat wave! I actually went to a drive at Divine Providence parish instead of Westmont this time, and I used 556C in memory of Erin.  It felt good.

~ interesting stats ~

I'm the most common, O+.
Remember, O- is the universal donor.

What type are you?
The generous type, for sure!

PS - see Mimi's helpful tip in comments.

Let me know if you donate and I'll post your name in the sidebar.  Perhaps others will be encouraged/reminded to do so if they see your name.  Spread the word. 
It's all about helping others, isn't it?

A Little Grace

A special little girl was born on Friday, July 7.

This is Elizabeth Grace,

named after our Erin Elizabeth.

She is the daughter of my niece,

the granddaughter of my brother, aka my Milwaukee kidney.
(Photo from my niece's blog HERE.)

Soon after this little sweetie was born, they noticed she was very lethargic.  Tests were done, and they found her blood sugar level was dangerously low.  She is now in Children's Memorial Hospital in the NICU. The results of more in-depth tests point to a condition called hyperinsulinemia - her pancreas is secreting too much insulin which causes her sugar to drop. The doctors have currently prescribed a medication plan hoping to regulate her little system, and she will most likely be in Children's for about a month.

Please keep Elizabeth and her very tired and worried parents in your thoughts as life's roller coaster takes them on this unsettling ride.

She has a big sister at home waiting for her too. 
 Perhaps you remember this photo and post from last summer.

Thank you,
from Elizabeth's great Aunt Mary
who is a bit weary of life's challenges...

Luxury or Necessity?

So, how did everyone fare during the 3-day power outage?
Did we all have fun doing without our electricity?

~ reading this weekend's book club selection
once the sun went down was a bit of a challenge ~

 - Peter Vilhelm

~ it was awfully toasty without the air conditioning,
and really hard to sleep at night ~

- Jules Cheret

~ and man what a pain it was to have to drive to the local coffee shop

at 5:30am for my morning jump start ~ 

Thank goodness we're up and running again!

I'm exhausted!

Luxury?  Maybe.

Necessity?  Let's say the highly preferred way of living!

FLY ERIN!

it's summer time

swim season

pasta parties 

fuel, the night before the big competition

teamwork and success

a little girl born with gills and grit

the family fish - the only one,

calling it her own, in no one's shadow

POTTS!!!!!!!

Streamline!  Don't breathe!!

You get her, Potts!  

You get in there and catch her!!!!

FLY ERIN

swim fly

edge out the competition in the lane above

and leave the one below far behind

keep moving with focus and intention
see the wall

as i work in the pool now

your physical strength and fiercely competitive spirit

are in the smell of the chlorine

and in the determination of my patients

who work through their limitations

and boy, does that make me smile!
fly, erin... FLY

My Space

I tell people I'm not who I once was. I don't know if they really understand. Some do. I guess. I hope. For a long time after Erin was diagnosed with cancer I'd said that if she didn't survive, if I had to one day bury my child, then they'd have to put me in the earth right alongside her. They did.  A large part of who I once was is in that ground. Gone.   And when I visit Bronswood I often lie in the soft grass on top of her, feeling her in the breezes that blow and the wind chimes that ring and the flowers that bloom, and I wish I could stay under the protective limbs of the pine tree that towers over her; the one that withstood recent turbulent storms that felled mighty oaks just across the way.

The deaths of Skye and Dr Nachman caused eruptions of fresh pain. It's pain that's always under the surface, but pushed deep to the core by the necessity of everyday living. One has to function and smile. It's expected. And I want to do so.
Most of the time.

There are exciting events happening and challenging responsibilities to learn at new jobs and dirty clothes to be washed.  All important. Some mundane.  All part of -Well, life does go on, you know.
Yes, it does.

We host parties to celebrate the truly wonderful occasions in our lives ~

to welcome the lovely, soon-to-be member of our family

by showering her with gifts in anticipation of an August 6th wedding!

But there's an energy required to roller coaster between these joyous events and that core pain, complicated by the resurgence of my own grief in the recent experience of my friend Hope's fresh grief and my profound sadness over the shocking death of the physician that helped guide Erin to a better life in spite of the chaotic effects of her cells at war within. It's an energy few understand.  
Throw yourself into the present. Into the lives of those around you. Have fun!

I do.  We do, those of us who've buried children do so as best we can, but the gaping hole left by their absence, an unfulfillable hunger pang, constantly gnaws at our insides. Our lives become a complicated series of integrations necessitated by the jagged tear that splits us in two; fragmented pieces penetrating each side.

We grieve the one gone, and look for ways to include them

among the events of the present time.

The internal on/off emotion toggle of those of us with dead children doesn't always switch seamlessly. It occasionally shorts out and results in sparks of tears and exhaustion. Grief truly is hard work.

I'm now the editor of the newsletter for the Chapter of The Compassionate Friends, where I've attended meetings for about a year. Members of the steering committee submit articles of interest for possible inclusion in the issues, and I recently received the one below that I've pulled into the July/August publication. Due to the ever-present dichotomy of grief - joy, and the complexity of the elements that now define me/us, its theme hit home.

~
Please experience me as I am and not as you think I should be. I have
transformed and emerged out of the cocoon of ignorance and paradisiacal bliss.
I have seen the other side of life; I have visited the landscape of suffering
and know all its twists and turns and I need to tell you this story of mine. It
will require of you that you listen carefully and without prejudice. You do not
know this land, how can you; so I will teach you about it graciously.

At times, I may be angry at you for not knowing this place of desolation and suffering, and other times I will forgive you for not knowing. I will often treat you in a
way that makes you feel what I am feeling. I ask you to forgive me for this, but
it is a strange experience being me.

Often I wonder why people do not visit this place of their own accord.
I guess nobody wants to know this kind of sadness unless they have to.

My journeys there have made me wiser, stronger, more compassionate,
cynical, sad and bitter. It's strange, but all of those qualities can be
in the same person at the same time.

I have returned to your world a different person
and if you want to get to know me as I am now, then we
can meet and share with each other. If not, I will leave your space.

TCF Atlanta Online

- beneath the pine tree