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

Weekly Photo Challenge: PURPLE

autism home rescue 07292012

This vine at my mother’s house had white flowers before she got sick.  Then the flowers died and she thought they wouldn’t come back.  But somewhere in the midst of her chemo treatment, the flowers returned with a beautiful purple hue.  They gave us all hope

I keep this photo in an album entitled “Things To Be Happy About” to remind me that anything is possible.

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

:~) Quote for the Moment (~:

autismhomerescue11241101“Miss Rhode Island, please describe your idea of a perfect date.”

“That’s a tough one.  I would have to say April 25th.  Because it’s not too hot, not too cold, all you need is a light jacket.”

~from the movie “Miss Congeniality”

 

A re-publish of one of my favorite posts:  One hour in another time ….

 autism home rescue 0104201101

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

Grateful!

tree of lifeIt is raining today, but still I am grateful.  All the people I’ve spoken with for work have been cranky & depressed & difficult, but still I am grateful.  I didn’t run, I had a crappy breakfast, I’m kinda tired & coming down with a cold.  But still, I am grateful.  My son is in residential treatment, family members are struggling with finances & lay offs, my dad is being treated for cancer. 

But I am oh-so-grateful today!!  Wanna know why?

Because today I saw a facebook post from a friend who is cancer survivor.  She said her friend Rachel is “hanging on to see her baby turn 3 tomorrow.” 

“Cancer sucks, I’ll say a prayer.” I thought. 

So I looked up Rachel and I started to read her blog.  Just a few sentences changed everything for me today.  Go read about her journey, you will find inspiration.  Because of a brave, honest, beautiful woman I have never met, my gratitude list is longer today.

Gratitude girl

Today I am grateful for:

  • The rain.  It makes me have to be more aware of where I’m driving, it is cold & wet & I can feel it on my skin.  I have to react to it, have to experience it, and it reminds me I am part of a bigger world.  Nature surrounds me every day whether I agree with it or not.
  • Difficult people.  They call me at work because they need help.  When they don’t have the strength or ability to be calm & rational, sometimes I can be the calm they need.  I could hate my job today & complain about them.  Or I could see their crankiness as an opportunity to do something positive or at least to find the humor in my daily grind.
  • Residential treatment.  I saw Alex yesterday on his birthday.  He was freshly showered, had soft new pajamas, was in good spirits.  A bunch of the guys there– all kids around his age with autism– were watching “Alvin & the Chipmunks” (Alex’s favorite movie) in the common area outside his room.  One of the staff turned the overhead lights down so the lights from the newly decorated Christmas tree were sparkling, making the whole room pretty.  The kids were smiling– and yeah, some were flapping or jumping or rocking, but in a happy way.  Alex’s room felt cozy, he liked his Reese’s Peanut Butter Cup plush pillow I brought him, he gave me a hug.  I told the staff the place felt peaceful.  And when I left, I felt peaceful, too.

 

Thank you, God, for giving me this life and not someone else’s.  I am so grateful for my physical health, for my home, for the material things I have that give me comfort.  I can hug my kids, I know that they are safe.  I have love in my life, I have friends & family who sustain me through challenging times.  I am a child of the universe & I can feel that & know it.  I can recognize miracles & have the ability to talk about them and share my good fortune.  Thank you, thank you for all of that. 

Please Lord, help me to remember how blessed I truly am and to never take these things for granted.  Amen.

 

manifesting

My mother’s eulogy.

mom

For those of you who are wondering where I have been the last month…  On March 1st, my beautiful mother Susan lost her battle with cancer.  She was a pastor in the United Methodist Church & she touched many lives.  I have not been able to write anything since her death except for her eulogy, which I read at her memorial service on March 5th to a church filled to capacity with clergy, family & friends.  I share it with you here in the hopes that you will take away something positive from learning about my mother.  And ultimately, that you will join those who knew her personally in keeping her legacy, her memory & her gifts alive & accessible for future generations.  Thank you for reading.

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

mom cat wig shopGood morning.  My name is Cathy.  I am Susan’s daughter.  Wow.  There are a lot of people here.  My mother touched a lot of lives.  She was a pretty amazing woman.  I’ve been told I don’t look much like my mom, but that I sound somewhat like her and I have her mannerisms.  If you’ve ever had the pleasure of hearing my mother preach, then perhaps this morning you’ll hear a tiny echo of something familiar.  I will try my best not to give a long sermon however—like the graces at the dinner table that just kept going on… and on…  and on…  right after she started seminary (as we would all sort of open one eye and look around the dinner table at each other).  But the bottom line on that is:  I really can’t promise anything, because as a friend recently reminded me— I am my mother’s daughter. 

Which brings me to my first important point:  No matter how impressed you are with this speech, I will not be preaching for any of you next Sunday!

If I cry today, please be patient with me.  If I don’t cry, please be equally as accepting & understand it is not for lack of grief but is rather an answer to my fervent prayers for strength enough to make this tribute.

Let us pray:  “May the words of my mouth and the meditations of our hearts be acceptable in thy sight, oh Lord my rock and my redeemer.”

mom aidenAs hard as I try, I am not able to make sense of cancer.  I am not able to make sense of a life of hopefulness, purpose & helping others cut short at the tender age of 67.  I am not able to make sense of losing my mom.  But I do know that despite all this, my mother’s death does not have to be meaningless.  Today we can do more than be here at this memorial service.  Today we can celebrate my mother’s life, and really take to heart her contributions to the world.  And we can do something much bigger than senseless cancer.  Today can mean more.

At the end of my talk, I will ask you to do three very important things.  We’ve handed out pencils, so please feel free to make a note or two.

mom baby chris and cathySo.  My amazing and beautiful mother.  When I was writing this, I thought a lot about what to tell you about her life.  My brother and I were blessed to be loved and cherished children.  We were wanted, we were respected, our parents believed in us.  There is a beautiful story in the book “Radical Acceptance” by Tara Brach about a little girl about 5 years old (my Hannah’s age) who went out to dinner with her parents.  The waitress came to take their order.  The little girl without hesitation piped up and said “I’ll have a hot dog, French fries and a coke.”  Her father said, “No, she’ll have meatloaf, mashed potatoes and green beans.”  The waitress smiled, looked at the little girl and said, “So what do you want on your hot dog, honey?”  When the waitress left, the girl turned to her parents with wide eyes and a big smile and said, “She thinks I’m real!” 

Chris and I were always real to our mom.  No matter what was happening around us or within us, our mother always believed in our potential, in our ability, and in us as our own creative entities.  Not only did she “talk the talk” about respecting kids and communicating with them and listening.  But she “walked the walk” as well.

mom kidsOne of my favorite childhood memories is what I call “the mudpie story.”  I was about 3 or 4 years old and playing outside in the yard, sitting right at the end of a long hedge that went from the front door to the back porch.  Of course, under that hedge was a big, awesome puddle of mud.  From my vantage point, I couldn’t quite see the front door, but I could hear it open.  I looked up suddenly to see my mother standing over me, looking down with no particular expression on her face.  Then just as suddenly, she turned around and walked quickly back into the house.  So what goes through a preschooler’s mind in that situation?  Uh oh.  I’m in big trouble.  I know I must have been covered from head to toe in dirt and I was pretty sure her next move was to drag me off into a bath—or worse.  But a few seconds later, I heard the door open again and my mother reappeared carrying pie tins, plastic spoons and plates.  And she proceeded to sit down right next to me in that mud and make mudpies.  (Fancy ones too, I might add—with leaves and berries and sticks for decoration—because as all of you know, my mother never did anything half-heartedly.)  That was the moment I discovered my mother was cool.

mom alex schoolSo she talked about listening to kids, she advocated for kids.  But she also got right down in the mud, right where we kids were, to truly listen, understand, and be there with us.  Not to try to mold us to fit into an adult world, but to meet us in our kid worlds.  This simple lesson became the foundation of my college & graduate school education, it became the foundation of my entire social work career working with kids and families, and indeed, it became the guiding principle I came back to time and time again when my son Alex was first diagnosed with autism.  Now they call it “floor time” or other fancy names.  Mom just called it “the natural thing to do” – you make mudpies.

mom hippie dress cookingMom spent many years at home with me and Chris.  She created a warm, loving “nest” for her family, she made our home an amazing place full of opportunities to learn (I’m thinking especially about the huge variety of pets she put up with, including a dog, several cats, fish, gerbils and my brother’s hermit crabs—ick!)  Mom was a girl scout leader, an avid gardener who kept us stocked with fresh veggies, herbs & “sun tea” every summer, and a self-taught cook who graced us with meals from around the world— including Korean, Italian, French & Chinese cuisine. 

mom baby chris bathShe read stories out loud in the back yard, brought me tea & cookies when I did my homework, and let me stay up late listening to Beatles music with her and Dad.  (Sorry Chris—I think you were still too little for those nights.)  And with Mom’s superior organizational skills, she completely outfitted our green Volkswagon bus with all the trappings of a fully stocked kitchen, pantry & utility closet and every home comfort imaginable without even rearranging the seats.  Now that is talent.  I mean, seriously, a bomb could have wiped out the rest of our neighborhood and we could have survived in that van for six months without running out of snacks & paper towels.  No lie.

mom curlsSo she did the stay-at-home mom thing for quite a while.  And I think Chris and I would both say she aced it.  It was great to grow up that way.  But inside our mother, there was a persistent calling.  Like a voice that steadily grew louder and louder until she could no longer just set it aside.  Mom told me that when she was a small child, she had an out-of-body experience when she was really sick with a high fever.  Several years later, during a youth event at her church, she felt a calling to go into the ministry.  By the time Chris & I were teenagers, Mom had fully organized her life around her family, but she knew that she needed to honor the life God was guiding her toward.  The year I entered college, Mom went to seminary.  (And for those of you who are thinking “Aww, how sweet to be going off to school at the same time as your mom” I challenge you to have the guts to share report card time with a woman who always had a 4.0!)

mom preachI remember Mom saying to me after a couple semesters in seminary, she felt that all the things she was good at, all the stuff she knew how to do, and all her interests, finally fit together in one place.  She was meant for the ministry, she was a natural born helper-leader-teacher-inspirer and she had finally found her life’s work.  In truth, I don’t know much about her specific experiences in those early years, since I was away at school and busy trying to grow into my own life.  But I do know that whenever we talked about her classes or her new friends or her experiences as a pastor, the common thread was always about bridging gaps.  Bringing people together.  Teaching according to the people’s capacity.  Empowering people, creating peace out of conflict.  Mom was just so darn good at unconditionally accepting people as people, and not letting differences keep her from reaching out to understand someone else.  She was a scholar of systems theory, and because of her beautiful diplomacy, anywhere she went people just felt drawn to her—perhaps because they innately knew that any difference in background or philosophy between themselves and my mother would not keep them from reaching true common ground and creating win-win-win situations.

mom africaDo you all watch or listen to the TED talks?  TED stands for Technology, Entertainment & Design.  They’re a series of short presentations by experts across many fields & walks of life.  William Ury gave a wonderful TED talk recently on the importance of the “third side” in resolving conflicts, both big and small.  I highly recommend you google that one or go to www.TED.com where you can watch the 20-minute video online.  Dr. Ury’s research, work and personal experiences, show that while reaching out a hand in good faith to simply introduce yourself to someone different may not seem like much, these simple things you share can indeed change the world.

mom and grandmaIn August 2009, my mother was diagnosed with peritoneal cancer.  A day after her diagnosis, she must have had at least 50,000 people praying for her.  Prayer requests went out in huge ripples among all the families she had touched, and my mother felt the love & prayers that came back.  They sustained her through her surgery in September, and the rather long recovery which followed.  In October she began intensive chemo which took the beautiful curls which framed her face, but which never took away her optimistic spirit.  The chemo lasted until January, when the doctors said her cancer appeared to have been eradicated.  We celebrated Mom’s renewed energy and breathed a small sigh of relief.  But three and a half months later, in April 2010, the cancer came back.  Mom then started a different kind of chemo to keep it at bay.  On December 22nd, we discovered the cancer was now in her lungs.  The next day, five days before my mother’s 67th birthday, I began writing this speech.  Mom died peacefully, in her sleep, with only me and Christopher in the room.  Her last words were the The Lord’s Prayer.  And she waited until she knew, beyond a shadow of a doubt, that her children were ready to let her go.

Do you remember at the beginning of this talk I said I would ask you to do three things in honor of my mother?  Well, grab a pencil and write this down.

mom cathy dollFirst.  Find a child today, any child- yours, a neighbor, a kid in church.  Sit with them, be in their world for a few minutes and really listen to them.  Allow them to guide you wherever the conversation may lead.  Don’t just sit and watch them, really share a moment in their world.  Then tell them– in whatever way feels right for you– that you believe in them, that you know they have unlimited potential to learn and that they can do good things in the world.  Tell them that no matter what anyone else says they can.  They can.  And make sure before you go on about your day, that at least one child is absolutely sure that a grown-up knows they are real and believes in them.  That was my mother’s gift to me.

mom restaurantSecond.  Find a person who is different from you.  Maybe just from a different culture or background, someone who speaks another language, or maybe someone in your family who sees the world very differently.  Stretch on this one, go out of your comfort zone a bit.  Maybe pick the difficult person– you know the one, the one who causes you to go <sigh> and roll your eyes.  Someone who is challenging or quirky or belligerent or ornery.  Or perhaps someone you really don’t like very much.  Reach out your hand and invite conversation.  Sit with them, listen to them.  Reach across that mental distance and open your mind to really hear what they say.  Park your natural judgments or preconceived notions elsewhere for a moment, don’t talk back, just listen and trust that there is something important in doing this.  Walk away knowing one thing about them that you didn’t know before.  By doing this, you will do the most important thing a single person can do to create peace.  That was my mother’s gift to the world.

Okay, so are you getting all this?  Then let’s go further…

First reach out to a child.  Second, reach out to someone different from you.  And third—most importantly– share these ideas.  Ask another person or two to try this same challenge.

I am not able to make sense of senseless cancer or to make sense of losing my mother.  But I do know that today can mean more than all that.  Today can mean more than simply remembering a great woman for her great work in her life here on earth.  Today can be a chance to send a ripple out into the world, to shout out loud:

“Thank you God for Susan! 

We remember what You called her to share with the world. 

And while she is with You in heaven,

we will continue that work in honor of her.”

 

mom stairsLet’s send a ripple out to the world that God himself can see from the clouds.  Make my modest mother giggle with delight watching over us from heaven.  Let’s all do that.  Because she would really love it.

Thank you.  God bless you.  Amen.

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