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!