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"

Thursday, June 30, 2011

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

Friday, June 17, 2011

James Nachman, MD

Like others, I'd spent last weekend in that state of stupefied disbelief, the place where ~ it can't possibly be true ~ echos in the ears, as one clings to hope in that space of transitional safety before reality slaps one silly with the cold facts.

Pediatric cancer specialist James B. Nachman, professor of pediatrics
—affectionately known as “Doc Nach”—
died Friday, June 10 from a suspected heart attack
while on a rafting trip in the Grand Canyon.
He was 62 years old.

In late March of 2009 I'd sat up half the night composing a letter to the highly-recommended Dr James Nachman, detailing Erin's treatments and relapses since her 2006 diagnosis with Ewing's sarcoma, and declaring our intention to seek another set of eyes to ensure we were giving her the best life we could since it was apparent that the cancer was gaining the upper hand. I'd sent it to the email address on his U of C profile page, the one chronicling the education, accolades and clinical specialties of this esteemed, prominent physician, and figured when I didn't hear back from someone within a day or so I'd call and try to work my way through the make-your-first-appointment system of this giant medical institution.

I had an answer by 7:30 in the morning ~ not from his secretary, not from his nurse, from the man himself.
I'm happy to see her. Call this number and I can see you any time next week. JIM
Next week?   Any time?    Jim??
Five days later we met the man. He walked into the room, wearing neither the bright white coat boldly announcing his profession nor a demeanor pompously boastful of awards and international renown due to 30+ years of expertise in the field of pediatric oncology. Instead, wearing a huge smile, a red golf shirt, casual slacks and a pair of Merrells, he burst into the room and invited us to sit.  Welcome!!
With hands extended in introduction and a make-yourselves-comfortable affability, he leaned back in his chair, relaxed, as if lounging in the den waiting for the pizza to arrive before the 1:10pm Sox game began on TV. We began to recount Erin's history...
the facts, the pathology of the animal in the room.
After a bit, he turned his attention directly toward Erin and, with a
no-bullshit-served-in-this-space honesty, said ~  Now, we know we can't cure you. So, I want to know what's important to you. You're a senior in high school. You need to stay in school. You have finals in a few months, a graduation ceremony to attend, the prom for heaven's sake, and college... you have made college plans for the fall, haven't you? What do you like to do? You coach volleyball? You like to swim? Great! Here are my ideas for treatment, most of which you can do at home. Think about things and let me show you around the place here and introduce you to some folks...

As we watched him interact with his nurses and the patients during our tour, his genuine affection for all and, in turn, their reciprocation of that same devotion began to solidify the essence of the man before us. This larger than life personality then found a scrap of paper and while scribbling on it said ~  Here's the office number, my cell phone and my home phone. You already have my email address. Go home and talk about what you want to do, and when you've made your decision, just let me know.  Dave and I stared incredulously at this piece of paper in my hand,  cell phone? home phone??  and then back at the man who had grabbed our daughter - this 18-year-old proud young lady / scared kid with cancer - pulled her to his chest and, while kissing the top of her head, wrapped her in his giant wingspan of genuine compassion.  And I knew, a la Jerry Maguire, ~ "He had her at hello." ~ a tough sell for a teenager who hadn't been particularly interested in any changes, who'd had far too many in her altered existence since her diagnosis.
We'd never seen anything like it. We'd never met anyone like him.
We'll go home and think about it and we'll contact you ~ we faked.
He had Dave and me too. Hands down.

This gregarious individual owned a set of shoulders broad enough to not only offer rides to his younger patients as he hoisted them onto his 6-foot plus frame to carry them around the rooms of the SPA, but their amplitude leant balance and perspective to the lives of frantic parents as he bore the weight of the responsibility of determining the best medical plan to cure when possible and to palliate when not.

His way of life set a personal tone consistent with the advice he gave his patients; this man who flew across continents to speak at conferences, made regular trips to St Jude's in Memphis and took kids to Sox games and on rafting trips in the Grand Canyon ~ live in the moment, pack it in like there's no tomorrow, grab it all.

In doing so he helped give Erin, and I'm certain many others like her, the guts it took to outrun the emotional effects of this disease through the integration of necessary treatments with day-to-day activities consistent with normal teenage living.
To hell with low counts. You feel fine? Great! Focus on today. Seize it.

True to his word when he'd shared his cell and home phone numbers, he answered each time we called in emergent situations as the disease began to gain speed. He answered when Erin just wanted to check in with him.  Even while out of state, he'd responded - once, to a frantic 5:30am call to his cell phone, There's horrible pain!!! ~ take her down there, I'll call ahead, they'll be waiting for her ~ and of course, they were. Each and every one was, with open arms.

In spite of an explosion of cancer in her body just two weeks before she was to begin college, he told her to go.  We can admit you and give you chemo on weekends.  We'll take care of things that come up.

email, August 26, 2009, after spending the previous night in the ER receiving a transfusion and IV antibiotics due to this last chemo regimen
Subject: Helllooooo!!!
Hey Nach,
It's Erin.
Last minute questions that don't require calling you.
1-- Take bactrim normally this weekend even on anti-biotic?
2-- Can I just take the 1 1/2 bactrim at the same time in the morning? I have a feeling I'll forget to take the 1/2 at night. I have before...oops.
Okay well I'm off to college tomorrow. Please email back so I know what to do and mom knows what to do!
Peace Out DUDE!!!
Yep, DUDE!  He responded promptly, as always. And off she went to college until the end of October.  A challenging two months.  Two more months of near-normalcy that would never have been possible if not for Dr. Nachman.

In a state of panic the day after Thanksgiving, we'd phoned his home for the last time as Erin had begun to experience sudden, extreme, overall weakness.  She spent the following six days in the hospital.  He came daily, and several times when he entered her room, he'd shooed Dave and me out and let her RAGE at him, exhausted, and furious at the injustice of this disease's capability to rob her of control over her own body.
I'm done Nach. I can't do it anymore.   I know sweetheart.  I know...
And then he'd sat with us and told us he believed she had some fight left in her, to take her home and to be at peace with all we'd done for her for three years.  
It's important to be at peace with yourselves.
And on the last day in the hospital he came to kiss her goodbye, and then he came back later that day to kiss her goodbye again.
How did he kiss all those children goodbye for 30 years...  
Two weeks later, she died in our home.  He was right, she did have some fight left in her, along with balanced resolution.  She was unequivocally ERIN until her last breath.

I can't begin to imagine how far the impact of Dr Nachman's death has spread - from the halls of the U of C where he spent years with his brilliant colleagues and the nurses who adored him, to the international committee members with whom he conferred, to the healthy children like those he accompanied on his Grand Canyon rafting trip, to his surviving patients, to his present ones and to mothers like me, sick at heart, feeling as though another family member has died.
The number must be a staggering figure.

His voice forever echoing in my mind, Erin was truly blessed to have been under the care of this one-of-a-kind treasure.


Monday, June 13, 2011

Rest in Peace Skye Harriet Margaret Miller

May 23, 1991 ------------------ June 9, 2011

Dear Skye ~
I don't know how all of this works,
but it comforts me to think that perhaps you and Erin have found one another again
in a beautiful place where sunflowers bloom in abundance,
~ a place of freedom from pain, a place of much-deserved peace ~
where you can both look down upon us, your mothers,
whose hands and souls joined in that waiting room two years ago
and again today as we said goodbye to you.
May we be graced with persevering resilience as we live every day
with you both tucked snugly in each of our hearts.

photo, thanks to Mary Davis

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

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

My Friends - November 8, 2010

Thursday, June 9, 2011

hold my hand just one more time

The old folks went to a concert the other night - on a WEEK night!

We saw Dispatch

and thanks to Matty's friend Mike who works for the band
we had VIP passes and second row seats!
You're the best Michael - thank you.

Back when Matt was 17, Dispatch member Brad Corrigan
came to the Ashbury Coffee House
to listen to Mike, Matt and Chris perform,
and then he joined them onstage for a few numbers.

It was very cool experience for these guys.
Their parents too!

What a fun night!
I think Dave and I were the most "senior" members in the audience.
Didn't matter. We were standing on our chairs singing and clapping.
And we didn't fall off!

Gotta keep up with the young folks!

Erin loved Dispatch too...
(Matt is wearing the VB shirt)
distance is short when your hand carries what your eye found
hold my hand just one more time
- Elias-

The Elias Fund is a grassroots oriented 501(c)(3) nonprofit organization[1] that provides educational scholarships to the youth of Zimbabwe. It was inspired by the American band Dispatch and was founded in mid-2005 by a group of young adults. The idea of Elias Fund began when Dispatch's Chad Urmston spent time in Zimbabwe in 1994. While there, he befriended a gardener named Elias who later became the inspiration and namesake to one of Dispatch's most popular songs. Elias dreamed his sons Honest and Manuel would one day have the opportunity to gain a higher education. His dream was the cornerstone behind the creation of the Elias Fund, which has since expanded to include helping people in Zimbabwe. The Elias Fund has its Zimbabwean base in Chiredzi.

Tuesday, June 7, 2011

Seize the Moment!

In a couple of weeks I'm throwing a shower for my future daughter-in-law
and my head is popping with so many ideas.
I found these gorgeous, colorful napkins at TJ's and those flowers will be perfect and I'll need this many salad plates...
So many fun things from which to choose.

Cupcakes seem to be the IN thing right now.

I think I'll go with the mini-size and serve some raspberries and maybe a little kiwi with them because all these sweet young girls are watching their waistlines.

While giggling, I thought of the wonderful, wise and always witty Erma Bombeck who said ~

Seize the moment.
Remember all those women on the Titanic 
who waved off the dessert cart.

Then I sobered up and thought,
these sweet young girls don't even know who Erma Bombeck was!
Then I laughed again as I realized they will also find out, a la Erma ~
The grass is always greener over the septic tank!
Hah - thank goodness a little wisdom comes with the wrinkles!
I'll have five cupcakes please.

Wednesday, June 1, 2011


During my long-awaited Phase II Examination Day at the hospital in Milwaukee - the next step in the lengthy process to determine my eligibility as a Living Kidney Donor to my brother last April - the revolving door of the clinic had steadily turned to let in the stream of professionals who, one-by-one, examined my fat folder of test results that had been performed here in Chicago over a 5-week period, the contents of which thankfully confirmed I was in perfect physical health.  With fine-toothed comb in hand, they began to analyze each detail one last time to ensure my readiness for the formal presentation of my case to the Selection Committee for approval.  No pressure!

Before the inquisition, however, I was required to watch a video of a sweet young couple going through some of the steps to ensure the wife's decision to share her beloved body part with her husband - one of those staged situations where the "patients" gaze at one another through googly eyes and speak in nauseatingly syrupy tones while they somehow have the presence of mind to then turn and articulate the appropriate questions to the medical professionals in perfect sequential order - where the "doctors", in turn, sit in accommodating response to their inquiries, not with one hand overtly on the doorknob indicating   I have thirteen more patients waiting to see me in rooms down the hall, so chop chop!   but with full attention directed toward the parties, making them feel as though they are the only people on the face of the planet.  Barf!!  I always wonder if I'm supposed to be taking notes during those things rather than looking down my nose at them... Anyway, after a bathroom break the parade began, and I met with a nurse practitioner, a pharmacist, a nephrologist, a dietician, my donor advocate and several other individuals who each probed, analyzed and educated in their relevant areas of expertise.

The final meeting was a detailed psycho/social evaluation with a two social workers who posed the questions dictated by established protocol for those considering this surgery - in effect, was I really sure about what I was doing and were all my marbles intact?

  • Do you understand that you are a perfectly healthy person agreeing to a totally unnecessary surgical procedure that will pose serious risks, however low that percentage of said risks may be? Here, let me list those possible complications to try to scare you to death, I mean educate you.
    Yes, I fully understand.
  • Are you sure?   Absolutely
  • Have you been pressured in any way to give up your kidney?  Not at all.
  • Has anyone offered money or other forms of payment in exchange for your organ?  (burst of laughter) Oh yeah! My brother's millions outnumber mine! If only!  No, I've told him he owes me a meal on occasion in exchange for the fasting I've had to do prior to certain unpleasant tests.
  • You understand that you can change your mind up until the time they wheel you into surgery? Be sure to speak up if you have any doubts.
    I'm not going to change my mind, but yes, thank you. I get it.

I was asked a few more questions pertaining to my personal life, and at that point the subject of Erin's diagnosis, subsequent life with cancer and ultimate death took center stage in the conversation.  Through tears I'd tried SO hard to choke back for fear they'd consider them a sign of instability and cause for my elimination as a donor, I'd assured them of my confidence to have this surgery, and the integral part Erin played in my decision to step forward at the end of January to begin testing.

One social worker seemed really tuned in while I spoke.  I finished, and while maintaining the required degree of professionalism so as not to expose personal details, this woman informed me that she, too, had faced formidable challenges in her life.  She told me she'd often been called brave and strong and tough and admirable and...  but, when all was said and done, had found her word of preference in description of the way she wanted others to view her was resilient.

Resilient.  Since that day, I've thought of that conversation often.


the return of form or position after being bent, compressed or stretched
the ability to spring back, rebound
a recovery from adversity
the positive ability of a system to adapt itself
to the consequences of a catastrophic failure caused by
power outage, a fire, a bomb or similar event
death of child 
the ability to provide and maintain an acceptable level of service
in the face of faults and challenges to normal operation
the positive capacity of people to cope with stress and catastrophe,
including the ability to bounce back to homeostasis after a disruption
the ability to weather tribulation without cracking
the propensity to land on one's feet