What cancer feels like…

 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.

Now 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.

On 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.

Having 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.

Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

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.

Today’s Gratitude List

Today I am grateful for:

• This truly crazy guy named Shaun T.  For some reason when he says “Jump!” I actually want to.  Yes, I know the “Insanity” workouts are … well, insane! … but they are also really well balanced and motivational.  This dude has me stretching and toning and hopping all around the house.  I’m even thinking about signing up for aerials class again, and that can only lead to more quirky happiness I think.  See, it works like this– let me break it down for you in the style of a Direct TV cause-and-effect commercial:  If I jump around with Shaun T, I get sweaty.  If I get sweaty, I feel like an athlete.  If I feel like an athlete, I take trapeze classes.  If I take trapeze classes, I join the circus.  If I join the circus, I become the lady in the impossibly glittery hottie outfit who trains the dogs.  If I train the dogs, I make my girlfriend and her chihuahuas happy.  If I make the chihuahuas happy, all. is. good. with. the. world!  Conclusion:  Insanity workouts lead to happy chihuahuas.  Which brings me to my next point…
• Aubrey’s dogs.  I am so grateful for those furry little bedwarmers!  They’re like two parts firecracker, two parts teddy bear, one part slobbery wet kisses and 100% enthusiasm!  When I came home from seeing Alex last night, I was tense and a bit sad.  We had a great visit, he was all smiles and jokes and calmness, but right before I left, a noise got the better of his sensory issues and he got agitated.  I know he drifted off to sleep, but it’s always tough for me see him struggle.  I thought to myself, “How do moms handle this stuff?  Please, God, tell me again what I’m supposed to be doing.”  Then after a ridiculously long car ride, I walked in my front door and was greeted with such fanfare there could have been a parade running through the kitchen!  These little chihuahuas jumped so high I thought they’d actually make it to my shoulder without my picking them up!  Plus, they brought me all their toys, and when I sat down I got a plethora of furry kisses like none other.  I love the dogs.  And they love me.  Happy sigh.
  So what have we learned today? 
  Jump around, kiss your dogs…
  And remember to name the things for which you’re grateful!
  

:~) Quote for the Moment (~:

“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!

 

 

 

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.

:~) .. the questions themselves .. (~:

I thought this quote deserved a special highlight today as it seems to perfectly describe my autism life journey.  If it also resonates with you, please share!

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

“Have patience with everything that remains unsolved in your heart.  Try to love the questions themselves, like locked rooms and like books written in a foreign language.  Do not now look for the answers.  They cannot now be given to you because you could not live them.  It is a question of experiencing everything.  At present you need to live the question.  Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.”

Rainer Maria Rilke,
Letters To A Young Poet

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

:~) Quote for the Moment (~:

In any moment, we can take refuge in awareness & love. When we get lost, we need only pause, relax open to what is Here & re-arrive in the natural presence that is our true home.      ~Tara Brach

How to meditate (remember to breathe!)

:~) Quote for the Moment (~:

In any given moment, the universe is primed to give us new life, to begin again, to create new opportunities, to miraculously heal situations, to change all darkness to light & fear to love.      ~Marianne Williamson

Sharing a few autism journey miracles…

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