The most precious thing…

“Write about the most precious thing you’ve ever lost.”

Over the last 12 years of my life I’ve become an expert at “complicated grief.”  I struggle, I mourn, I attempt to preserve the past only to discover that my efforts push me into the new-ness of the present and the unknowable-ness of the future.  I thrash around and cry, just to be led back to the only workable solution in the moment– which is to be still and endure (or enjoy) the ride.

There are times when I feel as if I’m teetering on the edge of a great, overwhelming despair which could swallow up everything I know.  Yet I’m not clinically depressed or hopeless.  It surprises me every time, but many days I actually find hope in that completely blank, dark space of loss and grief. 

It’s like being in a softly lit room… picture a cozy living room with a fireplace and old-fashioned wall sconces with candles, indirect light reflecting from table lamps.  It’s safe and okay, despite the shadows cast occasionally as the fire flickers.  Then all of a sudden something blackens that space and you can’t see anything.  It’s scary and unexpected and you wonder what happened to the room you were just looking at, or who in the world could have that kind of power to extinguish the light or  “turn off the sun” (as Alex once requested when he didn’t want to wake up for school one morning).

What would be your first reaction?

Mine had always been to panic, to scream, to put all my energy into finding the cause and a solution so that I could have my light (and my comfort) back.  But then I was pushed through so many blackouts and so much loss that my usual response mechanisms kind of broke.  After a few episodes of feeling helpless and confused, I just started to *notice* when the lights went out.  I had no energy to do anything else at that point.  So I rode it out.  And I didn’t let myself go spiraling down into the abyss. 

Know what happened?

I realized I could still feel the heat of the fireplace.  And I gradually became more and more sure that the room was still there.  That in itself was comforting.  Then I started to ask questions and wonder what else I was supposed to be learning in that blank space.  At times my questions still come in the form of irate screams at the unfairness of my circumstances or the heartbreak of a loss.  But I’ve become more interactive with that darkened room and I don’t feel it’s so different with the lights out now as I once did.

The most precious thing I ever lost was the conviction that I was in control and could change the things I experienced so they would feel different. 

Yes, I can choose how I react to anything in my life.  I can manifest lots of good things from yummy cups of sweet coffee, to snuggly animals in my life, to better health and more satisfying relationships.  But I am not in control of the things that “turn off the sun” or extinguish the lights in that room.

I could write about lost precious things from a hundred different persectives:

The day my ex-husband threw his wedding band out a second floor window during an argument and how I felt crawling around in the damp leaves and grass the next day searching for that lost precious ring.  I even distributed flyers to all our neighbors in the hopes one of them would locate and return it.

The moment when I first read an article about autism and realized that the life I had envisioned was going to be vastly different from that point forward.  The loss of the precious dreams I had dreamt from before Alex was born.

I could write about my mother.  Her knowing me in the way she did was a precious gift like none other.  So powerful for me that I still refuse most days to feel the loss of it, instead remaining firmly rooted in the idea that I will never lose the connection and somehow she still speaks to me through the stillness and dark space.

Many other precious things… my youth, my childhood, the scent of my babies’ hair and how it felt to rock them to sleep undisturbed by outside troubles.  Even the trinkets, the pictures, the first home I created…. all precious and lost to me now.

But for whatever reason none of those things are connecting for me… 

The most precious thing is still here, it’s the resiliency that comes with complicated grief and loss. 

It’s something that, were I a more evenly skilled writer, I could probably explain and describe far more articulately than I’ve done here.  I guess for now you’ll just have to trust me on this one.

And the next time the lights go out on you, tell me if you can still feel the warmth of the fireplace.

:~) Quote for the Moment (~:

autismhomerescue11241101“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face… do the thing you think you cannot do.”

~Eleanor Roosevelt

For women in challenging circumstances ~
It’s okay to begin again ~

Please feel free to message me, too!

 double koru

~* a letter to my daughter *~

When I come to a hard place or a new challenge, I often find inspiration and hope only when I get quiet enough inside to pause and notice what’s around me.  It is usually at these moments that I find something in a book or article or quote from a friend that helps.  Today I found such inspiration in a letter to Hannah which I scribbled on the back of an envelope 18 months ago.  I was using the envelope as a bookmark while reading “Radical Acceptance” by Tara Brach.  Inside the envelope was a “dinner time schedule” written by Alex, which not only listed his preferred foods, but was also a powerful statement of his feelings & desires concerning our family and the struggles we were going through.  These letters reminded me today that I do not need to be afraid because LOVE is real and all is possible. 

Have you ever felt completely filled with the desire to communicate something important to someone you love, but for whatever reason you knew they would not be able to hear or understand it at the time?  Next time that feeling wells up in you, try writing it down– scribble it on a napkin if you have no better option– and then tuck it away in a drawer for later.  Write to someone else, or write to yourself.  You may be amazed at how your words will come back to you when you need them most.


April 12, 2010

Dear Hannah,

I’m writing this to you on the train home from work.  You probably will never read it, but I felt compelled to put these thoughts on paper.  I am reading a wonderful book called “Radical Acceptance” by Tara Brach.  It is about learning to accept all parts of ourselves and to really feel calm in our hearts & minds no matter what is going on around us.  Right now at home things have been so hard for us all.  Daddy & I are having a rough time, Alex has been out of control.  Money worries occupy my mind, we are separating & trying to move forward & make it all okay for you & Alex. 

You are almost 5 and you are a wonder.  You are bright & beautiful, a joy to behold and to be with.  I love you so much.  You cry to me that you are afraid of Alex’s outbursts, that you miss me or Daddy when we are not with you.  You say you’re afraid a lot.  I want to do nothing else but hold you on my lap and rock you and make it okay for you.  I am writing simply to tell you that I believe the things I am learning in this book will help, that somehow I will find out how to calm everything inside me, to find hope, to make it better.  Just as I had natural childbirth so I could be there for you when you become a mother someday, so too I feel I am meant to learn the things I am learning so I can share them with you.

You are so little, yet so big at the same time.  My “baby” who is destined to shine a beautiful, strong light in the world.  I would never tell you this directly– because no child should have to feel so much responsibility– but sometimes I think if it were not for you, my beautiful girl, I would give up and run away.  You are the reason I keep trying, keep working.

I love you and Alex beyond what words can express– up to the moon and back.  For Alex I try to keep my body strong and my creative mind sharp so I can hold him and find solutions for his challenges.  But for you, little one, I try to keep my spirit positive, to nurture my soul and the little girl and the grown woman all wrapped up inside.  For you, Hannie, I pray that God will help me find a way to do what others may see as impossible tasks– to find a way through this hard time to a place of true internal peace where there is no fear, no sadness or loneliness, only a deep security and true love.  I will show you by my example that LOVE is real and you do not need to be afraid.



Preface to Alex’s letter:  Keep a few things in mind as you read the following.  First, we often ate dinner together at the coffee table in the living room while watching movies (“Alvin & the Chipmunks” was the favorite at the time).  Second, Alex was just starting to learn prepositions.  And third, for whatever reason, this half-Italian kid had recently decided he was not eating pasta anymore– he made that pretty clear.


Dinner Time Schedule

(subtitled:  Dinner with Mommy and Daddy)

Name                Alex                 

With a fork and knives and spoon

What are we doing in here

For at the black table for dinner on plate

At dinner at chicken and rice and blockly and carets to eat for your hots dogs

for at the ketchup and salsa

And cut the bread into haves

From at the syrup please

From at the mustard please

With Hannah and Mommy and Daddy For at the Both Here

From at Both Please in the living room

From at Simon Alvin and Theodore

Where are Both Together

For sit on the couch with Mommy and Daddy

for brown pillows

At dinner

for Not noodles

Say Story Please From At Dinner Time Please.

(The last sentence was written larger than the rest and Alex drew a big box around it.  This story expressed something important for him & he wanted to make sure we read it out loud & really heard it.)

Today I am grateful for written words, expressions of love, hopefulness, moments of insight into Alex’s world & the connections I have with both of my children.  What will you write today?


The “D” Word

Here it is:   the big, bad “D” word I’ve been avoiding in my writing:


Fourteen years ago yesterday I was a real princess, a glowing bride in the most beautiful formal ceremony of my life.  My mother officiated.  I started down the aisle and actually saw– in reality– the vision I had seen months earlier when I slipped into my wedding dress for the first time at Kleinfeld’s in Brooklyn and turned to face the mirror.  A dear friend who years later would make her debut at the Metropolitan Opera graced us with her amazing voice, singing the Ave Maria.  Family members read poems, our friends stood with us to witness.  The weather was perfect, the day was long and fun and extended well into the night.  Everyone laughed, cried, danced and celebrated.  It was all perfect and I felt a joy and spiritual peace about the world and the start of my new married life.

People cheered us on that day because they loved us and they knew– beyond a shadow of a doubt– that we would make it.  If any couple could overcome any obstacle, could stick together through any storm, it was us.

… beyond a *shadow of a doubt* …

Our 99.9% “guarantee” on a happy life which our friends predicted that day did not include autism.  Or extreme challenges.  Or changes so overwhelming that we could not have possibly imagined them in any way, shape or form because we had no clue what it could be like to live in Holland—we were happily headed for Italy and we were confident.  Fast forward fourteen years…

The night before last after Alex was asleep, I sat down on the hard wood coffee table in the darkened living room to close my eyes for a few minutes and let in the reality of where my life had gone.  The bright light in the foyer shone down on the curtains on the front door and crept toward where I sat, just out of reach of it.  I took a deep breath and felt my feet on the ground, the table supporting my weight.

“This is what it is, fourteen years later.  Everything has changed, and Mom is gone.”

Soundless, warm tears welled up and meandered down my cheeks.  I let it in a little more, and breathed through it as if I were softening into a yoga pose, feeling that hurt, but knowing it was somehow a good pain.

I opened my eyes and looked toward the door.  At the bottom of the old, crinkled curtains, the light cast tiny shadows in the folds.  The shadows appeared to form letters across the edge of the fabric, as if someone had written in pencil in a tall, thin, fancy font. 

I closed my eyes again and mentally walked through the house, imagining how it had once been and what I had loved about it.  I felt the joy of caring for my home, my family, my married life.  I felt the pain and disappointment at the loss of those dreams.  More tears.  But this time with resignation.  Many times in the last few years I had come to a crossroads.  There was always an answer, a new direction to take.  Many leaps, always a net to catch me.

So what now?  I opened my eyes again and focused on the curtain.  What were those letters anyway?  Could I read them?  Bit by bit, I followed the penciled shadows across.

S.. t.. a.. r.. t   O.. v.. e.. r