Featured Post

OMG...shut up already.

The other day I was in the elevator at a major Boston hospital heading to the 16th floor.  The elevator was full of people; visitors carryi...

Tuesday, July 28, 2015

Things I Want my Daughter to Know

I am the Mother of one daughter, Catherine. She was born on a lovely March day after many years of infertility, miscarriages, and dashed hopes and dreams. It was clearly the best day of my life.

But I am a mother just like you. I have other things I do with my day. I am busy running errands, cleaning up messes, dealing with laundry and sometimes trying to read. I am also preoccupied with many other, seemingly unimportant things and I am certainly not perfect. I do try to be a good mom, but I know that sometimes I fall short of that mark as well. But my life is full and happy, and for that I am grateful.

One of the ways that I fill my life, besides being a mother and wife, is by being a hospice nurse. I did not actively seek out this job, it sort of found me. I have been a nurse, in one form or another, for 30 years now. I had never worked in the hospice field before, but it had touched my life. My own mother had hospice in 1997 when she died, as did my young cousin, who died much too young in 2001.

So I became a hospice nurse. Most of my patients are seniors. The ending of their lives has touched me for sure, although they seem to follow the normal course of the universe.  Many had full lives and were well loved. I was saddened, but felt that I was helping them and their families cope and I could go home and continue my life without too much distress. Things were ok. Then one day, I received the name of a patient to see at a large teaching hospital in Boston. When I looked at the chart, I did not see just a new patient to admit. I only saw myself.  A woman, age 42 at the time. The mother of a 4-year-old daughter. She had struggled for years with infertility and this child was a gift. She was diagnosed with cancer during her pregnancy, but refused treatment as not to harm her child. She fought hard against the disease. But in the end, it had won.

I went to see her with a feeling of dread. This is one of my worst fears, to leave my daughter. As I entered the room, I could sense her full presence. Her daughter was playing in the room, talking to her, like any normal child would. Her unresponsive mother could not respond verbally, but I definitely sensed a charge in the room, a warmth. I cannot describe it, but it was there. When the patient’s sister came to take the child to lunch, all that energy left with her.

I sat there with the patient, she was comatose. I told her what a beautiful daughter she had and how proud she must be of her. It was hard for me to be there, I wanted to run away. I held back my tears until I got to my car, then I couldn’t stop crying. I cry now still, years after her death, as I write this.

I had to see her many more times, as we see patients who are hospitalized every day. Each day was difficult for me, but I had to remember that I am the one having the good day. There is no reason for me to feel sorry for myself. All my energy needs to be directed to the patient and the family.

I brought the patient’s daughter some princess stickers at one visit. She proceeded to place them all over her “sleeping” mother. The mother looked ethereal lying there. She still had all her wonderful, beautiful thick and flowing red hair. The floor nurses had lovingly brushed it. She did not look as though she were ill. She did indeed look as though she were only sleeping.

I stayed longer than my normal visits when I went to see her. I sat in the chair next to her and talked.  I talked about her daughter, how she was the same age as my daughter.  I talked about her sister and mother who would be raising her daughter, how wonderful they were.  How I wish I still had my mom.  How I had always had wished for a sister.

I talked to her about my own daughter.  I talked as though we were friends just chatting. Her sister and mother were sometimes in the room when I came, and we all sat around the bed like old friends.  They told me how my talks with her seemed to calm her.  The nurses would call me when she was agitated and I would try to come, even on my time off. 

When I returned home after these visits, I would see my daughter, but with new eyes.  I thought about what I needed to share with her now that was truly important.  We all think we have so much time.  But we don’t.  So I took the time to read the story.  I listened more patiently when she told me a story.  I hugged her more.  I smelled her hair.  We went for longer walks.  I pushed her longer on the swing.

I saw her thorough my patient’s eyes, and my eyes opened more than I could have ever imagined.   

This lovely patient, who taught me so much, without ever speaking a word, died quietly a few days later. I read about it in the paper and heard it in report.  She died at midnight on the cusp of spring, a day before my birthday.

Months, years have passed since then. But I still, to this day, think about her. She has, without knowing, made me a better wife, mother and nurse.

 I thank her.


Monday, June 8, 2015

No longer one of the boys....

Okay. So I have not written on my blog since January and I was even spotty prior to that.  I could blame it on a lot of things, but the bottom line is that I have simply not been inspired to write.

I have had enough of death.  A high school friend died recently, suddenly, without warning.  A young 41 year old mom, with three kids, recently diagnosed with terminal brain cancer.  The list is long and I will not bore you, but it became, over time, overwhelming for me. 

 I know there is no escaping bad news. Beheadings in the paper, massive flooding reported on TV and all sorts of unjustified shootings. Just too much to take. 

I finally just turned off the news once and for all. 

I like reading about tea. So that became my go to read. Teatime magazine has the loveliest pictures on-line of beautiful table settings and wonderful recipes.  I indulged in that when not working or cleaning or shopping or walking in nature or taking care of my new chickens and ducks. I started to feel better.  And I kept ignoring the real news as much as I possibly could.

But one headline kept screaming at me.  Bruce Jenner.  Caitlyn Jenner.  I see it everywhere. It is hard to ignore.

People are talking about it. A lot.  Perhaps that is a good thing.  At least she is using her fame to bring to light a subject many once thought taboo.

People are posting her magazine cover on facebook.  Some of the comments are cruel.  Some, not so bad.  Most of my friends have not posted.  I know I have not.  But still, I thought about it often.

I know a few transgender people. I like them. They are good people. They did not feel like they were men (they were both male at birth) and finally decided not to hide their true selves anymore and became outwardly female.  They were always female inside.

I thought, I could not imagine living like that.  Hiding something because of fear or shame or insecurity.  Afraid of ridicule. 

But then I thought more about that and decided, most of us do this all the time. I know I do.

Very few of us show our true selves to the world.  We think we are too fat.  This is not possibly me we say when we see a picture of ourselves.  I was always the skinny girl. That is my true self, not this tub!  Or we lose our hair.  Or our stamina   We go grey. 

So what do we do?  We try to fix it.  We try to become more our "real" selves.  The picture we have in our heads and hearts of who we truly are. 

So, how is this different from Caitlyn? Or any other transgender person?  They just want to live as their real selves, too.  Why do we find this so amusing and entertaining? This is someones real life.  Why is it so hard for us to accept change?

We are also most likely never going to be on the cover of a magazine and we are certainly not getting a reality TV show. We are not famous.  But the famous are going to be hounded and photographed and written about regardless how discreet they try to be.  "Gotcha" is the way society is entertained now.  So I am sure it was empowering for Caitlyn to take that power away and give it to herself and present herself in a way that made her feel beautiful and special. 

I wish we could all do that.  I hope her family responds in kind and embraces her. Society will not. That is hard enough, but loved ones turning away, that is a heartbreak I wish on no one.

I  remember a hospice patient I was asked to see years ago.  She was a lovely lady with end stage pancreatic cancer who wanted to die at home.  I went to the address I was given and was told her son  would be there.  But when I rang the bell, the door was opened by a woman.

Hi, I am Jane, she said.

She a looked a bit like a man, five o'clock shadow with a rather large protruding adam's apple that bobbed up and down as she talked.  She wore longish blond hair and a too tight shirt with a flowing checkered skirt.  Her voice was deep and strong.  She had beautiful, long red acrylic nails. 

Good afternoon, I said.  Is your mom Nancy here?

Right this way she said.

Her mother was in a lavishly decorated bedroom wearing a white flowing nightgown and robe.  She was reclining on the bed looking regal and thin, but comfortable and calm.

Come in she said.

Her husband, Ed, sat nervously in the corner. 

I came home to die and I want you to go over all my medications with James so that I am not in pain.

Jane, mom.  Not James anymore.

Oh, right dear.  Sorry.

I could feel the tension in the room.  It was palpable. 

Ed got up and walked away.

I stayed for over two hours.  I reviewed everything that Jane needed to do to keep her mom comfortable.  There was so much left unsaid in that room. You could feel it hovering like a cloud before the storm.  But I said nothing.

Then I left them and walked out to speak to Ed.

He was sitting in the kitchen reading the Boston Globe.

He looked up.

Do you have any questions I asked.

Yeah.  Why did my son do this now?  Why could he not have waited until after she was gone?  I just don't get it.  James is our only child.  He was James until last month.  It sickens me to the core. I do not know what to do.  He is no longer my boy.

I sat down with Ed. I did not know what to say.

We sat in silence for a few minutes, then I heard a loud commotion in the bedroom. 

Come on Ed, come with me.  Let's see what Nancy needs. 

Ed followed me as we hurriedly entered the bedroom.

On the bed we saw Nancy.  Lying next to her was Jane.  They were looking at old family pictures in an album and laughing.  The loud commotion was laughter.  They sat close lying against a sea of pillows touching shoulders. 

Come Ed, join us said Nancy. 

But Ed left instead. 

I followed.

He went back to the kitchen, sat down and cried.

I am losing my wife and I lost my son.  It is almost too much for a man to take.

But you have not lost your son I said.  You have to forge a new relationship with Jane. 

Jane, shmane.  I will never get used to that.  It is humiliating.  Do you know he went to Harvard?  Played sports. We went to football games and played golf.  He left his investment firm.  He is living this weird life.  I am so ashamed. 

As Ed said this I looked up to find Nancy standing there. 

Ed, she said.  He looked up.

We have been married 53 years.  James is still our son.  But he lived a lie for us.  He wanted me to know the true person before I died. He wanted to be with me as he truly is. As she truly is. As she has truly been all her life. Of course, I knew about this for a long time.  I hid it from you.  I knew you would not be able to take it.  I encouraged her to move forward faster, before I was gone.  I wanted us to be a family before I go.  I wanted you to know her.  She is all you have.  And she is the same, loving person we raised.  Inside.  I hope you can embrace that.  It is my dying wish.

Ed looked at her.  It was silent for what seemed a very long time.  I asked if I should go.  Ed said no. 

I have known also, said Ed. I want to love her.  But I love him. All my life I wanted a son. I cannot face the humiliation.  I built a life on a lie.  Everything is falling apart.

Ed got up, hugged his wife, grabbed his keys and was gone. 

I followed this patient for quite some time.  Most of the time Jane was there and Nancy's friends and sister.  Ed was always working or out somewhere.

One day I called Ed to see if might come home early.

Nancy is taking a turn for the worse I told him.

I was there when Nancy died.  She had a peaceful death.  Jane was there and so was Ed.  They both cried over what they had lost.

Not only Nancy, but each other.

I often think of them.  I had heard that Jane moved away from Boston to California.  Then one day I read an obituary about Ed.

 In it, James was listed as the surviving son.

Death is not the greatest loss in life. The greatest loss is what dies inside us while we live. ~Norman Cousins

What is the opposite of two?  A lonely me, a lonely you. ~Richard Wilbur

Your absence has gone through me like thread through a needle. Everything I do is stitched with its color. ~W.S. Merwin

Thursday, January 1, 2015

And so it goes......

Happy New Year.

I have heard that now from several friends and family members, be it through social media, a text or a phone call. And I say it back.  I truly hope for happiness for all. I am looking forward to a new year and do feel happy and hopeful. It is nice to be free to feel that way, a blessing really.

But last night, on New Year's Eve, my work phone rang.  Now, I had taken vacation time and we had a wonderful holiday in Italy the past 10 days.  My cellphone voicemail said that I would return after the New Year and so I thought about just letting it go.  But our furnace had a problem and I thought it might be the repairman as they had my work phone on file.  So I answered.

It was not the furnace repairman.

It was a discharge planner from a hospital I know well. She needed help.  A patient needed discharged to home and she did not know who to call after hours on a holiday night. 

The patient, she described, was a young mother with three children and a husband, who had an evil brain cancer that had worsened and she just wanted to go home to die.  As the discharge planner described the case to me in more detail, my heart sank.  It hit close to home as she had a daughter the same age as my own.

And so it goes. Life ends. It does. Not the happy reflection I had hoped to have on this New Year's Eve.  But an important one none-the-less.

It makes mindless resolutions seem silly.

So here are some resolutions that I am going to follow this year and that I have tried to follow always, but sometimes fall short.  The beginning of a year is always a good reminder to try harder.

1. Reach out to people you meet and be kind, even if they are not.  You have no idea what they are going through.  Have blind compassion.

2. Be patient with people.  They do not have to live up to your standards, your schedule or your agenda.

3. Hug your kids more. Even teens who snarl. They need it most.

4. Never ignore a homeless person.  If you do not want to give them money, at least acknowledge their presence.

5. Do something nice for someone, it does not matter who.  Do it when you are feeling like no one cares about  you.  That is the best time.

6.  Remember that you will die.  We all will.  But what we leave behind, in thoughts and memories, is important.  So think before you speak.  Someone may remember that the rest of their lives. 

7.  Try not to take yourself or others so seriously.  But do not diminish other's thoughts or feelings.  Why be a cloud in someone else's parade?  Why do that?  Just don't.

And so it goes.....Another year to hopefully be safe, happy and a bit wiser. 

Peace to all. 

A good character is the best tombstone. Those who loved you and were helped by you will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble.
~Charles H. Spurgeon

Approach the New Year with resolve to find the opportunities hidden in each new day. ~Michael Josephson

Saturday, May 10, 2014

Missing my Mom

I hate Mother's Day.  Even though I am a mother, this day is incredibly hard for me.

I hate seeing the advertising that screams, "Call your MOM!" and "Mom's Special Day."  It doesn't seem directed to me as much as it seems like a direct hit to my soul.  I have no mom anymore.  I have no one to call.  I know I am a mom, but still. 

I miss my mom.  There is no other way to describe it.  I simply miss her. She died two months after learning she had cancer. I was there when she died.  The hole that was left is still there. She died in October 1997. I remember every single moment. 

My daughter was born in March of 1999.  I missed my mom the whole time as I went through infertility treatments, through each month of my pregnancy, and of course, each year; no, each day of my daughter's life.  There is something missing from my daughter's life.  And it is my mom.

My mother would know what to say to her now, as a teen going through teen things.  She would advise me what to do.  She would hug us and tell us we were fine.  I need those words so badly. I really do. I don't feel fine. I need her so much.

My mom was not perfect.  No mom is.  But the love, when real and raw, can be perfect, if only in hindsight.

I hope my daughter misses me when I am gone.  My hearts breaks for all those girls, and are we not just all girls, no matter how old we get? Anyway, my heart bleeds for all those girls who have a mother to see, but who cannot be touched.

So what are we to do, the unmothered?  None of us are totally motherless, otherwise we would not be here.  But so many of us are unmothered.  Either because of death or something like a living death.  It is all heartbreaking.

Sometimes I look at old pictures of my mom.  I wonder what she was thinking, who she was inspired by, who she hated, who she revered.  I never thought to ask those questions, always seemingly caught up in my own world, looking inward at myself.  And always thinking there would be more time.

I wish I knew then to ask.  So many regrets.  So much time I thought we would have together.

But then time ran out.

It makes me think of my own daughter, lost in her own world as well.  I am much more demonstrative with her, more open, spend much more time with her than my own mother ever did with me.  But that was not out of any lack of love or understanding. It was just the way it was back then.  And it is just the way I am now.  No accusations.  No, not at all.  I am who I am because of her. 

Anyway, to all you moms who no longer have moms, I wish you a very Happy Mother's Day.  You are not alone.  We all grieve and celebrate and move on.

It is what our mothers would have wanted. 

Happy Mother's Day Mom.

A little girl, asked where her home was, replied, "where mother is."
~Keith L. Brooks

Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.
~Edna St Vincent Millay

Sunday, April 27, 2014

Yes, it matters how you die.....

We never want to think about it.  Even patients on hospice do not want to think about it. I do not like to think about it.  But it there, waiting.
Some people think, well, it won't be my problem.  And that is true.  Many of the hospice patients I have taken care of have said they feel a release of all the nonsense they worried about for so long.  Bills, chores, work.....you name it. So, not their problem anymore.  They just want to be symptom free and pain free and die a good death surrounded by caring people, family and friends.  
But sometimes they forget about what they will leave behind in the wake of their death.  And that is where the real tragedy begins. With the end.
I am not talking about the grief and emptiness of losing someone.  I am talking about all the other stuff that gets left behind.  Sometimes it is a big money problem.  I have seen that a lot.  Or they have left a spouse who can no longer take care of himself and there is no one to step in, even though there are three adult children. No plans were ever made. No one dared to talk about it.
Then there is always the stuff that is left behind and the fighting about who gets what or how to dispose of unwanted things.  There are pets without owners, children without answers and many times feelings inside that are come crawling out when people least expect them. Like anger or regret. And their life goes on with unanswered questions and thoughts that will haunt them on good days and bad.
So once in a while you should really give a good thought to your own death.  If you stepped out in front of a bus tomorrow, and died, what would you leave behind?  Do you have a journal that you never want anyone to read?  How about  photos you never put into a scrapbook for your kids, but were always going to get around to.   
If you have young kids, how will they remember you?   As the harried woman who was always going to get to that craft project, but instead was always running around doing errands or cleaning up messes.  How about that dog you promised?  Did you ever get him?  Or that trip to the park you keep promising. You know what I am talking about.  But leaving behind broken promises isn't something we think of after death.  But they are by far the most troubling, right behind the forgotten words. "I love you."
People are selfish in death.  They say all the time, "I only wish for my children to be happy." I have said that about my own daughter.  But how can a child, whether young or as an adult, be happy if they are left to sort out the mystery of their mom or dad? Of who they are? Of how they were really viewed by those that raised them. Of their lives.  
So, at least put together a box of things you want to be remembered by, that show your real thoughts and feelings towards those who will be left to wonder.  It can be a scrapbook. Or a letter.  It does not have to be a fancy thing. It can just be simple.  A note saying how much someone is loved is a cherished memory that will last throughout a lifetime.
I took care of a woman once, who I will call Joan.  Joan had cancer, and came onto hospice quite early  She was 72.  She had two grown children, a son and a daughter. Joan was never demonstrative.  She was a professor at a college in Boston and her husband, who lived with her, was an artist.  They lived sparsely and mainly kept to themselves. 
When Joan became ill, she wanted her daughter, who lived miles away, to come and care for her.  After all she said, I gave her life.  She owes it to me.
The dutiful daughter, Ann, did come.  And she was ordered about by Joan, who was never pleased with anything she did for her.  Ann would call me often, usually in tears, saying she could not cope anymore.  She wanted her mom to be placed in a home.  Her brother could not help and she had to get back to work.  But her father insisted that the mom stay at home.  And so she did.
It was a difficult time for Ann.  On one hand she did love her mother, but on the other hand was only there out of a sense of obligation.  She told me stories of her youth and how her mother was always too busy and never made cookies or sewed or did the things that Ann saw other mom's doing.  Ann told me she held a deep resentment that she still carried with her and that had affected her life in so many ways.  She thought she had worked through them, but now with her mother's illness, they all came flooding back.  She was in despair. 
She is not alone.
Joan died on a stormy Tuesday morning.  Ann called me to let me know and I went over to the house to pronounce her mother and to offer comfort. When I got there, the house was eerily quiet.  George, Joan's husband of some 49 years, sat in the living room in his recliner facing the window, staring out at the storm.  He told me Joan was in the bedroom.  And that was all he said.
Ann and I went into the bedroom. Joan was lying peacefully in her own bed.  She had on a beautiful nightgown that her son had sent that had tiny red roses on it.  They were Joan's favorite flower.
As we sat there, Ann told me her mom had said to her the night before to make sure to look into a closet in an unused bedroom.  Ann asked me if I would accompany her to look, as she was suddenly frightened to go alone.  As we walked into the room and turned on the light, Ann turned to me with hardened eyes.  "I wished her dead, " she said. 
We stood there for a moment, and finally Ann opened the closet door. Inside we found stacks of boxes, each one marked, "FOR ANN."
As she opened a box, and there were exactly 40 of them, each one held letters and notes and memories from each year of Ann's life. Some boxes were sparse; only holding a small reminder of a birthday card or Mother's Day card sent.  Others were full of Ann's school art or tests.  There were many pictures that were clearly marked and dated.  Ann was astonished and smiled as she started to look through many of them.
Ann finally started to cry.  "I had no clue what I meant to my mom.  I wish I had known sooner."
My reply to her was, "At least you know now."
This gift from Ann's mother was remarkable.  It was a lasting legacy that helped to ease the burden Ann had felt for so long. Some might say that her mom could have simply told her that she loved her.  I wish it were that simple.
And so do you.
So tonight, think about your death. It does matter how you die. It matters to so many people you will leave behind.  Leave them at least a small gift of your love, of your kindness, of your soul. 
In that way, you live forever. And so does your love. A gift for a lifetime.
The hunger for love is much more difficult to remove than the hunger for bread.
~~Mother Teresa
There is no surprise more magical than the surprise of being loved. It is God's finger on man's shoulder.
~~Charles Morgan

Tuesday, December 3, 2013

Petty complaints are like a symphony at times. Rejoice in them.

It has been a year now since I have written on this blog. A year readjusting to our move to Utah. I am back working as a hospice nurse. I am in a different role here, as the Hospice Clinical Liaison, coving all the hospice offices in the state for my employer. I make sure things go well, and that doctors and nurses want to use our clinical services.  I also see patients still, many times in the hospital before they leave to come onto our service. Sometimes in their homes. Both are still sad. Both I truly love doing. I am so glad I found this calling.

Lately though, I have been working closely with a Pediatric hospital here in the main city of my state. It is getting to me a bit. Kids, when sick, break your heart. But when they are dying, it destroys you. To the core. Not being able to help keep them safe is devastating.

Watching them die at home, a living nightmare.

These kids are so brave. They still laugh and smile and love. They go through treatment with minimal complaint. They mostly want to play and eat junk food and watch Disney movies and hang out with mom and dad and siblings and friends.

They don't like the nurse so much. The nurse reminds them that they are ill.

I sometimes hate being the nurse.  I hate being the one that isn't there to play and have fun. The parents are tense when I arrive. The siblings hide in their rooms.

Sometimes we bring good news. No changes!  Things seemingly stable! But we also, many times,  bring bad news. You can see the faces of those in the room just bracing for it. And, as hard as we try, we know we are welcome, but not really. We think we are part of things in the home, sometimes going there daily, but not really. We think we know how they feel. But, not really.

And that makes us sad.

But I know how lucky I am. I get to go home after my visits to my healthy daughter and husband. My now teenaged daughter complains about school, homework, being tired. She complains about me not buying anything good to eat. She wants a new sweater. She is bored. She doesn't want to take the dogs out. She complains about a lot of nothing.

This is all music to my ears.

And I hug her for it.

This always, not surprisingly, puzzles her.

I cannot explain to her what it is like in these homes. She knows what I do and she hears bits and pieces.  But unless you are there, it is hard to explain to anyone.

So I don't.

I don't tell people how awful it is for so many. I don't lecture them on how important life is. They all know what I do.  Most do not want details. But what I do tell people when they complain to me about things that seem important to them, but are essentially trivial, is this; enjoy every minute of it. Enjoy complaining about the mundane, the ordinary. Enjoy it for as long as you can. It is a blessing in disguise. A song to my heart. The other day I was in a crowded elevator just having left the room of a couple whose baby was in the NICU and was soon to go home with them to die. It was horribly sad and I had been with them for three hours planning what we could do to get their precious baby home, even for an hour. It was emotionally draining for all involved; the parents, their extended family, the staff of the NICU. Everyone.

When I finally left, I had a very heavy heart thinking about them all. So when I got into the elevator and there were people jammed in, I tuned in, not out.  I heard people talking about the weather. How rainy it was. I heard someone talk about the crappy food in the cafeteria. Someone else said they were sure they had lost their keys.

And I felt better. Because this is life. The small, petty nonsense things that make up our world and our thoughts. The things that make us laugh, and rage and stress out. This is where we live. Who we are. And death does not make these things irrelevant. Death makes them a celebration.

And I went home with a much lighter heart.

Monday, December 17, 2012

You cannot make sense of the senseless

How can anyone make sense of the tragedy that occurred at the elementary school in Connecticut. I finally had to shut off my TV as I could no longer listen to reporters and their dumb questions and the purported 'experts' comments any longer.

This is a senseless tragedy.  There are no real answers.  We will never really know what led to this massacre. 

We do know the facts and they are enough.  Twenty kids were slaughtered as they huddled together in a place where they should have been safe.  And several adults also died needlessly as they tried to protect them.  They were all gunned down by a young man with many issues who had access to firearms that he shouldn't have had access to. His mother also lost her life. I am sure she never thought that her son could do such a thing. Was there really any way he could have been stopped?  Probably not. And that is the ugly truth. No matter how many ways we slice it.

We all feel the same way.  Angry, shocked, sad.  Relief that it was not one of our own.   And fearful.  Fearful that this could happen to our loved ones. I also feel guilt.  Every time I hear a Christmas song and start to think about the holiday, I remember the parents who lost their children and I feel bad that luckily I don't have to face such a loss today.

I have seen many children die in my hospice and nursing career.  Even expected deaths from a terminal illness are hard to wrap your head around. So I cannot imagine seeing twenty little bodies with horrible trauma inflicted upon them.  I feel horribly for the parents, but also for the first responders who had to deal with the aftermath.  They will never be the same. 

The parents will go through what all the parents go through that I have known who have seen a child die.  The loss is tremendous.  No words, no cards, no gifts can really provide much comfort. They will never be the same; their lives have been altered in a way that is irrevocable.  They will be numb for a very long time.  Life will go on around them, but they will hardly notice. Life stopped for them. At least the life that they have known. They will move forward, but will only go through the motions of life.  They will finally be able to fall asleep at night, but will awake in the morning and realize that their nightmare is real. They will have that awful pit in their stomach every single day for a very long time.

No one can understand their grief.  No one. It is a personal assault.  And it will be hard for the siblings as well. They will have survivor guilt.  They will always feel measured by the lost sibling.  Sad, but true.  Life will be altered for them as well. It is a wound that never really heals. Time makes it better, but time slows down for the bereaved.  And every milestone will be a reminder of what they have missed.  A birthday, a graduation, a wedding, a confirmation, a dance recital.  Holidays are strained. Life stopped, so how can you go on?  But they do. And they are my heroes.

I have an only child.  I cannot imagine losing her.  The thought of it just simply brings me to my knees. So, did I hug her more after this?  No.  I have always hugged her.  I have always known that she is a precious gift.  I go easy on her.  I forgive her often.  I know how fleeting life is.  I know that really the only thing we can give our children is love.  Every single day. It doesn't mean we will never be angry at them or punish them or set limits.  It means though that we hold them in special regard and love them unconditionally. 

I can only imagine that the mother of the shooter did the same thing. As did all the parents of those dead innocent children.

We will never make any real sense of this.  Time will pass and other news will take the place of this news and life will go on.  Life goes on regardless.  It will go on for the bereaved as well. They will live through the first horrible year and slowly they will return to life.  They have no real choice.  They must be brave. And they are.

The rest of us who are fortunate enough, thus far, to not have to live with such pain, can help by being kinder to people.  By letting go of petty nonsense.  By smiling at random strangers more.  By looking at our children and seeing them for what they are; innocent youngsters who crave and deserve our love. We need to put aside nonsense and find that love.  Then give it freely.

Making ourselves better and putting more love into the world is the best healing we can offer.

Do it often.

“You will lose someone you can’t live without,and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” 
~~Anne Lamott

Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.” 
~~~Edna St. Vincent Millay

 I thought of you with love today,
but that is nothing new...
I thought about you yesterday,
and days before that too.
I think of you in silence,
I often speak your name.
Now all I have are memories,
and your picture in a frame.
Your memory is my keepsake,
with which I'll never part.
God has you in Heaven,
 I have you in my heart.

~~~ Unknown

Saturday, October 6, 2012

How food nourishes our soul.

When we are born, the first thing that most of us do is cry.  Perhaps we are crying out because our world has changed so quickly; from floating in amniotic joy to suddenly being thrust into a cold, brightly lit room with little warmth or comfort. So, most of us, after quickly being cleaned off but still screaming, are offered to our mother's welcoming arms.  And then, to calm our frazzled nerves, we are fed.

And that is the beginning of our love affair with food.

Food nourishes much more than our body.  It nourishes our soul.  It defines who we are.

Think back to family celebrations. To happy times and also to sad. And think about what brought us all together and soothed our souls.  The table, laden with food. 

Special meals served down through the generations. Birthday cakes. The sad buffet after the funeral.  The Friday drinks with co-workers and friends. All more than simply food, they are part of who we are.

Think about your favorite recipes and cookbooks. The changing of seasons and how you long for your mother's stew on the first cold day of fall. The camp-outs with s'mores made over the open fire.  Kool-aid in the summer.  Cider in the fall.  Steaming hot chocolate after the first snowfall of winter.

All bring memories that comfort. All things we long for and enjoy.  Just thinking about it gives me a wonderful feeling.

Then comes the comfort 'food patrol' and, just like that, good feeling gone.  They are the ones that simply see food as nutrition. They are the ones glowering at you as you savor that first ice cream cone of summer.  The ones who never, ever have had a Coke and a smile. The ones that make you feel guilty and shameful when you even consider having fried dough at the State Fair. They take all the joy out of food and leave us feeling somewhat deflated.

So, many of us hide our real food needs in shame.  We worry what someone will think if we serve our kids a soda or a candy bar or, God forbid, fast food.  So we eat in the car or on the run or in the darkness of our family room after midnight.

Our nation has become neurotic about food. The joy has been taken out of it.  And so we have an epidemic of obesity. And I see a distinct link between the two.

Now that we are forbidden to enjoy what serves our soul, we eat like soulless junkies.  We fill up on  things that are laden with chemicals; with a list of ingredients that only a chemist would understand. We eat a lot of those things because someone said they are "healthy."  We eat to fill ourselves up, but find that we feel empty instead.  So we keep eating.  And that is not good, not good at all.

What we need are are more meals that feel like a hug and less that feel like a slap in the face. We don't have to gorge. We can savor. We can enjoy.  And it will fill us up like nothing else can, because small portions of something that we desire and need are much more fulfilling than any large portion of "should."

So today, feed your soul.  Find that old recipe that your mom cooked for a special Sunday meal. Forget about calories and fat content just for a day.  Eat like generations past have eaten.  Savor food that has real ingredients that your grandmother would recognize. You will be better for it.  You will.

We have not become healthier with better food knowledge.  We have become sicker. Generations past did not have obesity, as much heart disease or as much cancer.  They didn't.  But somehow we think we have become wiser about our food.  I don't think so.  Not by a long shot.

So, enjoy the fall season.  Go apple picking and bake a pie. Have cider and a donut. Just a little, not a a lot. A little bit of something wonderful is so much better than a big helping of low calorie anything.  Mary Poppins once famously said, "A spoonful of sugar helps the medicine go down" and also, "Enough is as good as feast."

She was so right.  She should have been a nutritionist.

All you need is love. But a little chocolate now and then doesn't hurt.
~Charles M. Schulz

The only time to eat diet food is while you're waiting for the steak to cook.
~Julia Child

He showed the words “chocolate cake” to a group of Americans and recorded their word associations. “Guilt” was the top response. If that strikes you as unexceptional, consider the response of French eaters to the same prompt: “Celebration.” 
~Michael Pollen

Great restaurants are, of course, nothing but mouth-brothels. There is no point in going to them if one intends to keep one's belt buckled.
~Frederic Raphael

Monday, September 10, 2012

How many more sunrises?

As I sat at my kitchen table this almost autumn morning, a thought came to me as I looked out my back window. How many more sunrises will I get to see?

I don't always have thoughts like this. Even when I was practicing hospice nursing, and saw so much death each and every week did I have a thought like this.

But recently, death has hit closer to home. Not my family, but people I know who are my age who have been diagnosed with cancer. And it has affected me more than I realize.

This morning was a quiet, peaceful slow morning.  After weeks of unrelenting "busy-ness," with travel, a family wedding to attend to out of state, a new puppy to adjust to and getting my daughter ready for junior high school (I was more stressed than she), I finally had a morning all to myself.  And my thoughts slowed down to the moment. And that moment felt so powerful.

I suppose that is why we keep busy. Quiet moments to reflect on things are not always peaceful.  Sometimes they make us think about things we would much rather avoid.  They can be powerful and sometimes overwhelming.

And not thoughts of our own demise or anything like that. But maybe we think about how much we miss someone.  Or will miss someone who is ill. Or maybe we think about a past painful emotional injury that we have kept buried. Or we think about how fast time flies and about things that we want to do but never seem to make time for. And it makes us sad, or empty or longing. 

And then we soon find something that needs done to distract us and make us too busy to think about them again.  At least for a while.

I don't know. I guess my thoughts were with my friends who are going to face their toughest battle.  Not with the cancer itself; but with the treatments, the horrible side effects, the disruption of their everyday lives, the impact on their husbands and kids. It is all so overwhelming. And I know it is. I have seen it. And I pray I never have to experience it because it is awful. It really is. But I also know it is coming. Maybe not cancer per se, but something. Eventually. And I felt like I really need to slow down now, right now while I am in my early 50's and while I am fortunate enough to sit at my table with my cup of tea looking out my window and enjoying a peaceful morning feeling good.

“Sometimes I can hear my bones straining under the weight of all the lives I'm not living.”
― Jonathan Safran Foer, Extremely Loud and Incredibly Close

“Things change. And friends leave. Life doesn't stop for anybody.”
― Stephen Chbosky, The Perks of Being a Wallflower

Sunday, May 27, 2012

Remembering....I know you by heart

This weekend, I am reminded of so many of my patients. Now that I have stepped back from my life in Boston, in our new home over two thousand miles away, I seem to be able to better reflect upon the years I spent as a hospice nurse. Many of the patients I cared for suddenly have been coming back to me in my memory. I cannot list their names due to confidentiality issues, but I remember them all. So many beautiful, lovely people. Many way too young. Many older as well, but who still had so much to give.

One woman in particular, I will call her E, died on my birthday. I will never, ever forget her And not just because she died on my birthday. She was simply remarkable. She was remarkable for her strength and her unrelenting courage.  I remember going to her home the day she died. She asked me what day it was. "March 20th," I answered. She said to me, "Is it spring?  I want to make it to spring." Yes, I told her. It was indeed the first day of spring.  She died peacefully several hours later. I remember leaving and going to my car and being just so angry. So damn angry that all of these people had to go way before their time. Not just E, but so many others as well.  It just seemed so unfair to me.  This loss.  This tremendous loss.

I had one patient, a firefighter, whom I just adored. He had renal cancer, but at one point, he rallied.  He seemed to be getting better. It was like a miracle. I visited that home twice a week, for almost a year. Then he declined.  I remember calling his MD, frantic. The MD was quite amazed he had lived this long and was not surprised.  He asked me what I had been doing, as clearly he saw no other explanation for this patient outliving his grim two month prognosis.  I think the MD thought I was nuts.  The guy was on hospice, for goodness sakes. I just didn't want him to die. He was living his life with his wife and grown sons and grandchildren and he was just a great guy. And just that past week they had  had a huge birthday party for him. But he died one night after waking up feeling like he couldn't breath.  The night nurse was there with him. I wish I could have been there. I miss him. I do.  And I hoped against hope that he would somehow pull through and have more time. But he was robbed, just like so many others.

I miss so many of the  people that I took care of. When you enter someone's life at the end of their life, all the nonsense strips away and you are left with just a real person. You know them quickly. They know and learn to trust you as well.  They let you see them in what is a very intimate, raw time. There is a connection no matter how briefly you attend to them.

Some nurses do not get the connection.  Everyone is different. But I felt a connection almost, I would say, 100% of the time. It is true. I cannot explain it. But I felt it.

One patient I fondly remember was a chef. She had a cooking show on cable TV.  I met her on only one weekend, but I will never, ever forget her. She was the matriarch of the family. Her husband and two adult sons were clueless on how to care for her.  You could tell that she always did everything for them.

 I went to her home to admit her to hospice on a Saturday morning and she asked me to not leave her alone with them. "They don't know what to do.  I am scared."  So I spent most of the day with her, going to see other patients, but then returning. She was a lovely woman.  She had been battling cancer for some time, but now it was everywhere. Her last MRI showed it around her heart, and so her MD told her to prepare and to sign onto hospice.

I remember sitting in her elegant bedroom. She had made it a haven. I sat in a beautiful chair next to her bed and we talked. Mostly about cooking and she told me a story about how she once met Julia Child. Her son came upstairs and laid on the bed next to her and fell asleep as we chatted. It was a cool autumn day, the perfect day to hang out and nap. It would have seemed like an ordinary day.  Except of course it wasn't.

I went back the next morning early.  She was declining quickly.  I stayed most of the day.  She knew she was dying and asked me to hold her hand. I gave her medication to ease the anxiety and she was able to sleep.  I stayed.  She died that afternoon. The sons and husband did not have a clue what to do. So I told them to sit on the bed with her and tell stories, which they did.  They told many stories about fun times.  She seemed so peaceful lying there, listening. Then her breathing changed, and she passed away quietly. Elegantly. Just like she lived.

I could go on and on with so many stories. I may tell more on another day. The memories seem to want to come out now. They are all truly etched in my heart.

I will never forget them. And I miss them all.

The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared.”

~~~ Lois Lowry, The Giver