High enough to see beyond horizons….

20140606-174432-63872514.jpgToday I went to the bank to get my passport out of the safe deposit box.  I figured it was probably time to renew it, even though we don’t have any specific international travel plans right at the moment.  As I rifled through the box looking for it, I came across the baby journals that I wrote for Alex and Hannah.  These are books I started long before they were born, when I first learned I was pregnant.  I continued to write in them until each kiddo was in preschool.  Alex’s journal is full; Hannah’s stops halfway through, but she is the second child and admittedly, I did kind of have my hands full by the time Hannah became a toddler.

Tucked into the front of Alex’s journal, I found a small note.  It’s a copy of a letter I sent to my best friend in San Francisco and although it isn’t dated, I believe I sent it in the summer of 2006.  My friend at that time was preparing for his yearly trek to Burning Man, “an annual art event and temporary community based on radical self expression and self-reliance in the Black Rock Desert of Nevada.”  As part of the Burning Man community experience, each year they designed and constructed a beautiful non-denominational Temple where people could write and attach notes to loved ones, prayers, wishes, thoughts, hopes and dreams.  At the end of the week-long event, the Temple was burnt down, after which everyone would pack up and head home.  I had been wrestling with my guilt over Alex’s autism, trying to connect with my higher power and stay strong as Alex’s mother.  I wanted to send my tangle of emotions and resolve out into the universe, somehow point it all directly towards the heavens, and let it go.

My friend did me a great honor that year by carrying the note to the Temple on my behalf.  He taped it high on one of the walls and took pictures so I could see exactly where it was attached.  Then he videotaped the burn.  I watched and cried as my words rose in ashes straight up to the sky.  I made my promises to my son, and let go of what I couldn’t control.  And I felt something heal inside me.

Through all the challenges we have faced recently, and despite all the pleading prayers and focused intentions on which I’ve steadied myself, I had forgotten something important.  It is not my place to determine Alex’s life.  He is a child of the universe, and as such he is always cherished and protected and lifted up.  My job is simply to do the best I can to take care of him while he is here on earth, and to respect the life he was born into for reasons more important than right now, and a greater purpose which I in my basic human-ness may never fully understand.

Reading the prayer of my younger-mother self today was a timely reminder of all of this.  I am grateful to be able to share it with you:

 

20140606-174431-63871606.jpgDear Alex,

I love you and I am proud of you always.  I feel I was born to be your mother. 

You are bright and capable and you will make great contributions to the world.

I bring this prayer here because I want to let go of my guilt.  I know I did not cause your autism.  But when I see you struggle with your words and scream in frustration, I wish more than anything I could make it better, make it easy for you, take away your challenges.  Yet I know the easy path is not the one you’ve chosen, you chose this life for its lessons.

I pray for strength.  I pray for compassion.  I pray for hope. 

I know that we are stronger together and that God has blessed us with each other.  I promise I will never give up on you.  As these prayers go up to heaven, may we both be lifted high enough to see beyond horizons.

Love, Mommy

~*~*~*~*~*~*~*~

20140606-174430-63870736.jpg

What cancer feels like…

abandon all doubt Having someone you love be diagnosed with cancer is an experience that is hard to describe unless you’ve lived through it. 

Last year on the anniversary of my mother’s death, I wrote “The in-between day” about my grief and my perspective from the other side of that 365-day transitional time.  This year I didn’t write anything.

February 28th came and went pretty much like a normal day.  Late at night, when the clock neared 12:15 am on March 1st, I started to cry but said nothing, wrote nothing.  I didn’t reach for Aubrey, I didn’t talk about it for an hour.  I just sat silently, trying to feel my mother’s presence, trying to hear her voice.  I couldn’t feel her and I heard no sounds that might have been a sign she was with me.  I felt lonely.

boats and rocksNow as I begin my third year of grieving, my thoughts are pulled back to the cancer time.  The diagnosis, the fear, the treatment, the hope, the reality and trying to figure out how to help Mom live and die in the way that was important to her.  As I reflect on those events, the images in my mind are of the ocean.

The cancer time, from diagnosis to death, felt to me like being on a small fishing boat just floating in the middle of the water. 

Unlike my sea-worthy mother, my stomach does flip flops on the ocean and it’s not a comfortable feeling for me.  But without any motion sickness drugs, I had to find a way to relax into that rocking sensation and just stay on the boat deck and be present.  Sometimes the ocean was choppy, the waves were high and threatening, and I felt like I would sink and drown.  But I never did.

boatOn good days, if I was present and I stayed on the boat, I could enjoy the sunset or notice how beautifully the lights reflected on the water.  My family could talk about the day they saw the dolphin, or how amazing it felt to nap in the sun on the deck that one afternoon. 

On the bad days, I rode out the storms that came and kept telling myself that no matter how bad it got, the boat would not sink, I would not die from crying, somehow my life would carry on.

tulips close upHaving someone you love be diagnosed with cancer feels frightening and out-of-control, and it is just that.  The overwhelming grief and fear can throw your boat around on the sea and leave you bruised and battered. 

The only thing you can really do is to hold on, remember you will not sink, and be present enough to experience the joys you’re not expecting to happen. 

Because when you get to the third year of grieving, your boat ride may be the only part you can remember for a while. 

And there is great reassurance in remembering that you did not miss the sunsets.

tulips

Daily Prompt: Immortalized in Stone

On December 14, the day of the Sandy Hook Elementary tragedy, the WordPress Daily Prompt was “Dear Mom.”  Today, on what would have been my mother’s 69th birthday, the prompt is “Immortalized in Stone.”  The picture in my head is her gravestone, although the WordPress prompt was not about death, but about commemorating a life and carving out a symbol of significance.

And so here I begin….

~*~*~*~*~*~*~*~

Dear Mom,

Throughout this last year and nine months since your death, I have felt your presence in big and small ways nearly every day.  The fact that you gave birth to me 40-some years ago is not lost on me.  I continue to be Susan’s “Little Chip” as you loved to call me– a “chip off the old block” minus the “old block” part.  We have matching hands and I have always been grateful for that because every time I look at mine, I can see yours.  It is like a window into your life, a connection to a perspective I couldn’t otherwise have.  When I look at my hands at the age I am now, I can flashback to the two of us together when you were my age.  I remember who you were to me, and I can see myself through your eyes.  I know what my hands will look like 20 years from now, and how my daughter will hold them and watch them.

Hands are for doing, for holding, for shaping and sculpting.  You were my sculptor in so many ways.  You helped form the woman I am now and everything I know about being my true authentic self began to grow from ideas you instilled in me as a little girl.  My spirituality, my parenting, my creativity, my persistence.  The way I create a home, the way I work, the things that make me giggle with pride.  I am humbled to see your hands– your busy, graceful, purposeful life– through my own and to know that I am helping to guide my daughter’s life as you did mine.

What have I wanted to say to you but haven’t been able to?

Nothing.

There is nothing I left unsaid at your death.  There is no joy or sorrow or secret you did not know about me while you were alive.  I only wish that you could see my hands now, wearing a ring that Aubrey and I had specially made with Grandma’s diamond in the center.  I wish I could show you and giggle with you about how it sparkles in the sun as we walk to the beach from your house.  I wish you could meet Aubrey and make a fuss over her and serve her dinner on your porch.  I wish we could wedding plan together.

Aubrey and I will be married on the beach down the road from your house.  Our names will be painted on the side of the wedding shoppe you always liked.  Your best friend in the ministry has said she will “channel” your spirit so that you can once again lead my wedding ceremony.  (Please make this easy for her, Ma, and remember there’s no need for dramatic sweeps of wind or rain during the ceremony, okay?  I promise I will know it’s you.)

The sculpture you began when I was born is a work in progress, ever-changing.  By the time I see you again in heaven, there will be another set of little hands drawing and sewing and carving out a life of her own.  Perhaps she will be wearing my ring and thinking of the generations of women who started out before her, and the generations who will come after and what mark they will make on the world.

I miss you every day, Mom.  I remain proud to be your daughter and humbled to bear your resemblance.  And I will always be grateful for our matching hands.

With love,

S.L.C.

~*~*~*~*~*~*~*~

ringDaily Prompt: Immortalized in Stone

Your personal sculptor is carving a person, thing or event from the last year of your life.  What’s the statue of and what makes it so significant?

Daily Prompt: Dear Mom

Write a letter to your mom. Tell her something you’ve always wanted to say, but haven’t been able to.

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.

The in-between day

One year ago tonight (Feb 28th) I said goodbye to my mother.  She took her last breath in the wee hours of the morning of March 1st.  This year, because of the Leap Year, there is a full day in between to mark the anniversary of her death.  It is as if that short time span between when my mother and I had our last interaction and when she died has unexpectedly expanded into 24 hours.

I am not sure what to do about this.  Ever since I read an article Sunday sent by the hospice on “marking the anniversary of your loved one’s death,” I have been wondering about this day. 

They say “timing is everything” right?  My mother’s timing was purposeful on the day she died.  There was a white board on the wall at the foot of her bed which announced “Today is Feb 28” and a clock right above it.  Mom struggled through that day, fading in and out of consciousness.  People came to say goodbye, people came to pray.  My brother and I and our family members took turns alone with her, telling her we would be okay, telling her we loved her, staying by her side.  I struggled, too, as I watched the dying process, wondering how to do it, wondering what would make it better, wondering what would happen next.  Mom waited until only my brother and I were in the room to take that final breath.  She waited until she heard us say we were ready to let her go.  And she waited until March 1st. 

At first I thought this was Mom’s way of making sure we’d get just a little bit extra from social security in her inheritance.  She was a very efficient, business savvy woman after all, and it seemed fitting that she would know about that detail.  I am sure she knew exactly what the clock said somehow. 

But now, a year later, I think perhaps there was a different reason for her timing.  Maybe the transition between life and death is not so finite as we who are living can know.  Maybe there is a space in-between that is more important than the timing of the goodbye, or the finality of the last breath.  Perhaps my mother chose the time she did so that one year later we would be reminded that it wasn’t the 15 minutes into March 1st that made the real difference to her or to us, but it was the process of moving through that time together to the other side.  Maybe being in that moment, helping her to die in the way she wanted, recognizing the connection we had with her and knowing that our love would continue… maybe that whole process was worth its own day, something too powerful and important for just one time stamp on a calendar.

All day today my brain has wrestled with these thoughts.  And all day today my mother has been gently nudging me toward this realization.  The swan I saw on the green outside the university as I drove to meet with Alex’s clinicians, the bluebird pin on the convenience store cashier’s sweater, the child’s “C” charm I found outside the door… little things, maybe random meaningless little things… all brought Mom to mind.  They were things I would tell her, reminders of something we shared, little odd scenes of life that didn’t seem to fit with the rest of the day.  Kind of like clues pointing to all the things I don’t really know or have yet to learn about life.

Tomorrow I am going to pack up clothes to give to a cancer charity, then I’ll take time off my regular job to read aloud in my son’s classroom.  I’ll eat lunch with some autism mom friends, have an important meeting at the residential treatment center and come home to hang shelves in my daughter’s room.  After laundry and dinner and phone calls and emails, my daughter and I will have a “girls night” together in front of a movie on the couch and snuggle up.  To any casual observer, my day will be busy and productive and all about juggling the many important responsibilities in my life.  But to me, alone in my heart, tomorrow will be all about my mother.

mom cat wig shop

… important things i do remember …

Happy Birthday Mom Mom!

“Beauty is a heart that generates love and a mind that is open.”

~Thich Nhat Hanh

Today is my mother’s 67th birthday.  Happy Birthday Mom!  My apologies for plastering your age all over the internet.  But the thing is, I think 67 is pretty darn young.  Be proud of it, you are beautiful.

This morning as I trekked to the train station in a foot of snow, the wind rushing through the trees sounded just like the ocean.  Each step forward, my boots sank into slushy snow and my ears heard another wave crash onto the beach as “ocean spray” stung my face.  It seemed fitting considering we had all spent Christmas together at my mother’s house at the Jersey shore.  Midday on Christmas day we took a drive along the boardwalk and watched the ocean.  My daughter and I played a game of “which do you like better?” and concluded snow and sand are equal in her book.  …..

~*~*~*~*~*~*~*~*~*~
 
hope owlWhen I logged onto WordPress this morning to write a new post for my mother’s birthday, I found the above already written from last year.  Begun, but never published.  Isn’t that the way life goes so often?  Projects started, plans made, but we’re all ultimately following our noses from one moment to the next.  That doesn’t make me feel sad, I think it’s actually the way things are supposed to be.
 
This year there is no snow.  Christmas was very different.  I feel optimistic about my family’s future.  And I know 2012 will bring wonderful things.  So to honor my mother on what would have been her 68th birthday, a list of the important things I do remember:
 
faith
  • God is always present.
  • Love never dies.
  • No matter what happens in relationships, the connections we feel & the memories we have are ours to keep forever.
  • Cats are companions, and they are not as aloof as dog-lovers would have you believe.
  • There’s a way to dice onions into perfectly square pieces & this is how they should be cut for Grandpa’s turkey stuffing recipe.
  • If you love it, buy it– it will work.  Trust that the colors & patterns you love will work together as long as you are following your instincts & the finished creation makes you smile.
  • Scents carry memories.  Cinnamon candles & Obsession perfume bring you back to me, Mom.
  • Everything has its place, and you can always make room for the important things you want to keep.
  • If it makes you feel better to be a little obsessive about keeping track of things, go ahead & do it, no one’s gonna mind.
  • Most everything can go in the dishwasher.
  • People who don’t like to sit on the porch & enjoy the weather with a cup of tea or a glass of wine just haven’t done it enough to really appreciate this simple pleasure.  Try Tension Tamer tea or Woodbridge Merlot.
  • Take every opportunity to travel the world & meet new people!
  • Take lots of pictures, keep your notes about trips– your friends will appreciate these reminders of happy times.
  • Laugh often.
  • Love much.
  • trust-your-heart-sampleThere is a plan for every one of us.  Trust.
  • Be respectful of your neighbors.
  • A couch in the kitchen is the best place for an afternoon nap.
  • Give people the benefit of the doubt.
  • Women are just as capable as men.  If someone thinks otherwise, prove them wrong.
  • No matter what you remembered or forgot to buy to *cook-decorate-fix-or-update*  a  *meal-home-thing-or-outfit* you can always improvise and make something beautiful with what you already have.
  • Keep a spare key just in case.
  • Share.
  • Take a deep breath when people drive you nuts, and try your best to hear where they are coming from.  It doesn’t mean they are right, but it will make you feel better.
  • There’s always a Plan B.  Trust that truth, and don’t panic.
  • Be proud of your family traditions & the good things about your own culture & background– celebrating diversity means celebrating *everybody*
  • If you have hard day or you get stuck in a bad habit, destructive pattern or depression, forgive yourself & start over.
  • It’s okay to use cuteness to your advantage.  A sweet smile goes a long way.
  • You will remember everything that is important.  It will be okay.

Dear Mom….

People have been telling me lately that I should write to you.  It feels kind of silly to me.  I talk to you all the time, just as I’ve always done.  I cry to you in my car when I am upset.  I whisper questions to you when no one else is around.  I scream at you sometimes because I am angry you left me and sad that you couldn’t beat cancer.  I look at your picture on my fireplace and tell you about my day. 

Sometimes, as I’m going about my evening routine, thinking something happy, I smile at your picture– eternally smiling back at me– and I creep up close and secretly share my thought.  Just as I’ve always done. 

“Mom, did you see what I found for Hannie for Christmas?  I’m so excited, she’s gonna love it!”   …

Of course, I don’t tell anyone else all this.  Because even though I’m sure everyone who has ever lost a parent or someone close to them at some point talks out loud to their departed loved one, I still worry that someone would raise an eyebrow and judge me for “crazy” behavior.

(Did I just hear you laugh when I said that?)

Anyway, Mom, I’m writing this silly letter early in the morning on Christmas Eve.  Aubrey is still asleep upstairs, and so are her dogs– two little chihuahuas.  I know you’re a cat person, but you’d love them, Ma.  One of them is only three pounds and she thinks she’s a cat, I swear. 

 … So I’m here in the living room with the lit-up Christmas tree.  I took the real-looking fake one you and Dad bought and decorated it with Grandpa & Grandma’s old ornaments and whatever I could find from last year that didn’t get broken in the “ornament smashing incident” of 2010.  <Sigh>  The tree looks as pretty as yours did last year.  And I made a star out of cardboard and tin foil like you and Chris did years ago.  Aubrey was so impressed with my creativity that I had to sheepishly admit I had stolen the idea from you.  Aren’t you proud I actually gave you credit?

(You just narrowed your eyes at me, didn’t you?)

We have tons of presents under the tree.  Big stuff, little stuff, wrapped all different kinds of ways.  I was remembering last night how you used to wrap the presents all differently with fancy ribbons and patterns.  I tried for some variety, but my stack of gifts doesn’t come close to how beautiful yours used to look.  I appreciated that, you know.  I don’t think I ever told you.  … one of a thousand things I have left to tell you…

You died too soon, Ma.

Soooo… anyhow… we’re going to visit Alex today and hang out and maybe do a local day trip or a drive.  Then tonight we go to Aubrey’s parents’ house where her Dad will play Santa for the kids.  Then Christmas morning Dan will bring Alex here and we will all have brunch and open presents before Dan and Alex go to see Dan’s family.  …

I remember we were all together at your house last year.  I remember what you cooked, I remember how the house looked and smelled and felt. … I had a moment of panic last week and I broke down sobbing to Aubrey in my kitchen because I was afraid I couldn’t remember everything.  You said to me the last time it was just you and me together in your house that I would remember everything you taught me and all you said, and that it would be okay, that I would have it all inside me. 

… I miss you so much, Mom… 

I get afraid that the memories, the lessons, the important things will slip away from me, will fade from my mind.  But I did manage to find the ornaments and set up the tree and put some pieces of Christmas back together this year. That gives me hope that somehow it’s all still here.  Somewhere. 

You made this holiday special for our family every year.  Christmas was yours (and Grandpa’s before that) and it was always wonderful even if plans got changed or there was an argument or regular family life somehow threw a wrench into things.  It was wonderful because of your tin foil stars and all the little things you did.  You seemed calm in the busy-ness of Christmas, I think, because it brought you peace and you actually remembered to remember what it’s supposed to be about.

I’m going to try to make it good for the kids this year.  And I’m leaving your picture right where it is, so you can watch it all and I can shoot you a secret glance once in a while.  I’ll take a leap of faith and presume I’ll feel okay about it all in the end.

… And if you want to send me a sign, or leave me a message, or something like that… well, that would be good too.  There’s a new bluebird ornament on the tree for you, right near the star.

I love you, Mom.  Merry Christmas.

xoxo

mom cathy doll

The Biter

I’m a social worker, I’m fond of talking about things no one else seems to want to talk about.  Maybe that’s because I use language to process my emotions, to make sense of my world. Or maybe I’m just a glutton for emotional punishment.  In any case, I’ve decided to take a leap and let you all in on what’s been going on in my autism world recently.

You’re probably thinking “Whoa, what an introduction… let me go refill my coffee cup before I dive into this…”  Or perhaps you’d rather jump on over to Big Daddy Autism or Autism Army Mom for “the lighter side” of the autism life and some comic relief.  Yeah, me too.  I mean, seriously, I would rather be writing about funny stuff my daughter says or dancing in my living room in fancy costumes.  But this is a topic that for me right now simply cannot wait.  I am struggling over here.  And I know other moms are too.  It’s the elephant in the living room and I’m gonna talk about it:

My child got violent.  Out of control, state-of-emergency violent.

Big.  Bad.  This-is-not-how-the-world-is-supposed-to-work, cry-out-loud-on-my-knees kinda violent.  He broke a school bus window with his head.  He got so destructive in his classroom, the teachers had to clear it out.  Both of those incidents resulted in 911 calls.  He has been hospitalized three times over the last two months.  He has been picked up and carried to padded rooms in psych facilities.  He has bitten, kicked, punched and spat at nurses, counselors, therapists and autism experts.  His destructive behavior has broken countless things, big and small, including several hearts…

We have tried various medications but none have worked.  We are now on a fourth medication (which so far seems to be helping to stabilize things– fingers crossed) but regardless of how well it works, the doctors have recommended

R-E-S-I-D-E-N-T-I-A-L   T-R-E-A-T-M-E-N-T

It took me a long time to get up the courage to face those words.  I am still hopeful that residential treatment for Alex will mean a short-term stay at a residential facility, and that he will return home soon to me and his dad.  I am not ready to give up that vision– in fact, I’ll tell you flat out that I believe in miracles of all sorts and that my son’s autism story does NOT end here, especially not with facility-based treatment.

So by this point I am betting you are silent.  If you are a teacher or mother like me– one living in this “alternate” world of challenges– you probably feel a pang of empathy and saddness.  If you are not connected to autism or my family, perhaps you are curious about this part of our journey.  Or perhaps you are thinking there is someone you know who “needs to read this,” a person in a similar situation to mine.

But I am not writing to inspire anyone.  I write because I need to say out loud, “My child is the biter.”  I remember when Alex entered preschool and I was new to the world of stay-at-home moms.  Other parents and I would convene outside the school after morning drop-off and talk about mom stuff.  Mostly light funny stories, or sharing the stress of balancing family and work and life.  Once in a while someone would have an anecdote about another child or parent– usually a person no one in the group knew well– and there would be whispers about a behavior, a parenting style, an interaction at school.  I would walk away thinking to myself, “I’m glad my son is not the biter.”

Well guess what folks.  My son *is* the biter.  He is the child I am raising.  And guess what else?  His violence and destruction, this current struggle to remain optimistic about his future and to find my way back up after I’ve been knocked down (literally and figuratively), does not change all that I love about him or his innate potential.  He is still the miracle child of my six-word memoir, the sensitive special child I will always believe in, against all odds.  I give you this ramble today because I want you to know how important it is to me that the world not give up on my child– or on me.  I want to talk about the elephant in the room because I understand better now what happens when a child is “the biter.”

We all need to feel some sense of control over our worlds and our futures.  To think that we don’t truly know what tomorrow holds, or that the actions we take and the choices we make will not necessarily guarantee us safety and security, or protect us from what frightens us most is too much for the average psyche to handle.  So we whisper about it and thank the stars for the narrow escape we just made from that particular heartache.  We talk about “warrior moms” and applaud people who find the “cures” for autism, we try remedy after remedy to balance our lives so we can get through the days of this journey.  But sometimes, despite all this, we find ourselves on yet again a different path.  I had found hope, I had a good plan and the right helpers, and we were on track.  Then the scary, violent stuff came.

Now I’m going down a new road– and no one seems to be talking about it without whispering.  But I am an average mother with a son who is almost as big as I am and soon to begin puberty, a newly single parent who is also raising a typical first-grader.  I know from basic statistics that I cannot possibly be the only parent in my position, given the current divorce rate and the fact that 3 out of 4 children with autism are male.  And I am betting there are many other mothers in the world who are right at this moment surrounded by people and experts and “solutions,” but who are still silently screaming at the same crazy situation I am.

So there you go, I brought it up.  Check out that elephant folks– it’s a big one.  Powerful animal, wrinkly and gray, it could crush you if you’re not aware of where it’s standing.  Oops– now it’s eating the candies out of the dish on your coffee table.  Someone please step up and talk to me about it.

The “D” Word

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

D-I-V-O-R-C-E

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

ok-to-start-again

 

..*~ abundance of appreciation ~*..

The WordPress question this week is Have you ever considered writing a book?”  The short answer is “Yes.”  The longer answer is “Already have a children’s book, just need an illustrator.”  And the funny coincidence is that what I was originally going to post today fits right into that theme.  Yay for cosmic timing, hehe.

While cleaning out my mom’s house this week, I came across a small journal on her bookshelf.  To my surprise, it was a book which I actually wrote for her as a Mother’s Day gift several years ago.  A small, handwritten gratitude journal to record the “abundance of appreciation” I felt for all the small gifts my mother had shared with me over the years.  Today I’m sharing them with you.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

For Mom, On Mother’s Day, May 10, 1998

Dear Mom,

I’ve been thinking a lot about what my life has been like over the past 30 years since I passed that milestone birthday.  I decided that for mother’s day I wanted to write you a book.  A book that lists some of my favorite memories of my childhood.  A book that remembers the little moments.  A book that puts in writing some small part of the abundance of appreciation I feel for you.  I’ve heard it suggested that people should keep gratitude journals to write down those things they’re thankful for everyday.  Mom, every day I am grateful for you.

Love,  Cathy

  • Making my baby clothes (age 1)
  • Adopting our dog Scottie (age 1 1/2)
  • Your dress with all the letters & numbers, the skirt was all I could see. (age 2)
  • Being more concerned about me than about the V8 can I spilled when I tried to get it from the fridge (age 3)
  • Buying me “Chipper” and not “Barbie” (age 3)
  • Making doll clothes to match my clothes (age 3)
  • Staying home with me when I was too sick to visit Baltimore.  We all piled onto the pull-out couch bed. (age 4)
  • Teaching me the best way to lick an ice cream cone– you have to keep turning it so it doesn’t drip. (age 4)
  • Letting me name my baby brother (age 5)
  • Understanding that mud pies are important; giving me pie tins to put them in (age 5)
  • Teaching me to bake bread (age 6)
  • Taking me to Linvilla Orchards.  And introducing me to Dutch Apple pie. (age 6)
  • Signing me up for dance classes with Hedy Tower and not some fru fru tutu lady (age 7)
  • Helping my second grade class in having a party for Miss Semless when she got married (age 7)
  • Becoming a girl scout leader (age 8 )
  • Learning to cook food from all over the world; giving me the International Cookbooks for Kids (age 8 )
  • Making my dollhouse (age 9)
  • Changing my desk into a dressing table just like you have (age 9)
  • Taking me to piano lessons (age 10)
  • Organizing the best birthday parties any kid could have– chocolate fondue & treasure hunts, sleepovers in grand style, the surprise party at Girl Scout camp (age 10)
  • Putting the pink chair in my room (age 10)
  • Using onion powder instead of (yucky) onions in many meals (age 12)
  • Giving me the canopy bed as a surprise when I came home from play auditions (age 12)
  • Teaching me to paint my nails before bed (age 13)
  • Teaching me to apply lipstick just right (age 15)
  • Taking pictures at my Sweet 16 party– especially the one of me on the couch afterwards (age 16)
  • Bringing me tea & cookies on a tray when I had to read all night for school (age 17)
  • Sewing an extra band of elastic in my prom dress and being concerned enough to yell at me for being too thin (age 18)
  • Letting me rummage through your jewelry (all ages!)
  • Encouraging me to go to Barnard (age 18)
  • Feeding me saltine crackers when I said I could not eat (age 19)
  • Becoming a seminary student and a minister (age 20)
  • Driving back & forth to New York City to pick me up from college (age 20)
  • Asking me if Dan was “the one” right after we met and believing me when I said yes. (age 21)
  • Buying me my first Acura Integra because that’s what Grandpa would have done (age 22)
  • Talking to cats.  Training me for cat psychology and then consulting me later (age 23)
  • Helping me decorate my apartment and figure out where all the furniture fits (age 24)
  • Always keeping rooms in your house for Christopher and me (age 25)
  • Teaching me to cook rice pilaf, chicken tarragon and cheesy scallop potatoes when I was very stressed and needed comfort food (age 26)
  • Buying presents for your “grand cats” (age 27)
  • Liking Clinique as much as I do (age 28)
  • Helping me through every step of making my first quilt– and then insisting that I did all the work myself (age 28)
  • Officiating at my wedding and being “the wind beneath my wings” (age 29)
  • Being a role model for me all my life (age 30)

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

After I read this, I started to cry.  (Come on, people, you know me– what else would I do?)  I asked Mom out loud why she had to die.  I told her I missed her and that I wanted her to give me a sign *that very minute* that she was okay, she was still with me and that she was listening.  The doorbell rang.  It was my Mom’s friend, the pastor from her local church, who had dropped by on an impulse to help me clean.  (Thanks, Mom.)

After we were finished for the day, before I drove home, I went back to the bookshelf.  Right there, next in line for packing up, was a small bright green book of Hazelden Daily Meditations for Women called “Each Day a New Beginning.”  Mom had left only one bookmark in it, on this page:

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

September 18

“The future is made of the same stuff as the present.”  ~ Simone Weil

The moment is eternal.  It is unending.  When we move with the moment, we experience all that life can offer.  Being fully awake to right now guarantees rapture even when there’s pain, because we know we are evolving, and we thrill with the knowledge.  We are one with all that’s going on around us.  Our existence is purposeful and part of the whole of creation, and we can sense our purpose.

Nothing is– but now.  And when we dwell on what was, or what may be, we are cut off from life– essentially dead.  The only reality is the present, and it’s only in the present that we are invited to make our special contribution to life; perhaps at this moment our special contribution is to reach out to another person, an act that will change two lives, ours and hers.

We must cling to the present, or we’ll miss its invitation to grow, to help a friend perhaps, to be part of the only reality there is.  The present holds all we need and all we’ll ever need to fulfill our lives.  It provides every opportunity for our happiness– the only happiness there is.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

So there you have it.  There were some people in my life who died before I had the chance to tell them all they meant to me, or to ask the tough questions, or to have the honest discussions.  I feel so blessed to know that my mother and I left nothing unsaid, nothing unresolved.  And apparently, the conversation continues.

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