A Life in 9 Green Garbage Bags

Today Alexis's life fit neatly into 9 green garbage bags containing blue jeans, dresses, blouses, sweaters, blazers , shoes,  pajamas, tee shirts, bathing suits, winter clothes and summer clothes.
 9 bags.  The clothes were among her most valuable possessions. Going through them was like a trip down memory lane and  many items triggered flashbacks to good and bad times, the dress she wore to her prom, the pajamas she wore in the hospital.   Dani and I lovingly examined each item and discussed whether to keep or donate it.  I know Lex would be pleased that we are donating her belongings to the Children 's Wish Foundation and it helps that they will go where they are needed.   However, the bags also call attention to how young she was and how little she had.  Lex's  spirit, her hopes and dreams are wrapped up in those 9 bags, and they are a painful reminder that she just never had a chance to really get started.

It was a hard afternoon and I feel sad at having to do this task at all,  emptying her cupboard and drawers of her most intimate belongings is such an invasion of her space and, it is so final.   Part of me feels that I could have put off doing it because there is some comfort in seeing her room as she left it. There is also the unreasonable concern that without her clothes to look at it will become harder to remember her, even though  I know that I really don't need her stuff to keep her memory alive.  Leaving her room untouched also seems the easier choice as in easier to do nothing, but it really isn't,  because it was distressing to see her clothes becoming outdated, a constant reminder of a life that simply stopped.   9 green garbage bags containing my daughters essence now sit on my porch waiting for pick up and it is all I can do not to run outside, rescue them and put them back where they belong despite knowing that the act of donating her clothing albeit painful is another necessary step in moving forward.

My Paradox

After almost 3 years of mourning I think I am qualified to discuss what its really like, I mean REALLY like to live this way.  The death of your child is not something you plan for.  It is when that child is born healthy and helpless, that you understand the enormity of the responsibility you have taken on, as a parent you feel fear but also excitement for your child's future, imagining, and planning as they grow.   Immediately you also experience a love so powerful that you know you would do anything to ensure that your child lives as wonderful a life as you can provide.  But, when the unimaginable happens and your child is diagnosed with a life threatening disease you realize how vulnerable we really are and all the unreasonable fears you harboured inside all your child's life have actually become real, this does irreparable damage, it opens the door to fear.  You understand with clarity that your child could die, when your child does die, well, our language has no words to describe the unimaginable pain and sadness you feel, it is horror, it is pain, it is terrible emptiness and it is the knowledge that nothing you can do will ever bring your child home and that's when you understand that this is how you are going to feel for the rest of your life.   You will never stop missing your child nor do you want to because somehow missing her and remembering her hold hands in your heart.  This is a life changing experience, the worst has happened the open door that fear walked through stays open,  now you belong to the special club of people who understand our true powerlessness.   But, although I fear life's frailty it is that very fear that has provided me with the insight to see how wondrous our existence is.  I will always feel overwhelming sadness but somehow, miraculously I can appreciate joy, see beauty and feel love. This is what Alexis's death has taught me and I clearly see the paradox of my life,  the confusing emotional rollercoaster that I ride every day.

Alexis's 30th Birthday

Always before Alexis's birthday I get a little maudlin.  The magnitude of what we have lost is incomprehensible.  This birthday would have been her 30th and Lex would have celebrated in style.  We continued with the wonderful tradition that began with Lex's 28th birthday.  This year almost 30 friends and family joined us for a Sushi, Asian fusion dinner (Lex's favorite) at a local restaurant.  We visited Lex in the afternoon and spent time thinking about and missing this beautiful, vibrant, wonderful person - my daughter.   Then we went to dinner with the most beautiful, wonderful people, our friends and family.  When I looked around the restaurant my heart warmed to see so many loving faces who needed/wanted to be together and be with us on this night and I am so grateful that Lex was the kind of person who garnered so much love.  This is a trickle down effect, the love for Lex is now being given to us unconditionally  and it helps, it helps a lot.

 I find myself day dreaming sometimes, wondering where Lex would be now if she had lived.  Where would she be working, would she be living on her own, would she be married, single? So many possible scenarios.  If she had never gotten Leukemia where would she be?  As a healthy person the sky was the limit for Lex, the possibilities endless.   That she would have been living in another country is a big possibility, she was an adventurer, an explorer, a risk taker, she easily connected with people wherever she went and the world held endless possibilities for her. But, if she had survived I wonder if she could have been a complete person or would she have been riddled with health issues for the rest of her life?  Graft versus host disease, secondary cancers, cataracts (already diagnosed) lung issues, liver issues, joint pain and arthritis from steroids and chemo, a weakened immune system, heart problems, the list goes on and on, and I ask how my vibrant daughter would have coped with this litany of health problems.  Would we have had to watch a person we adored attempting to live a compromised life, constantly hitting brick walls, never being able to achieve what she dreamed of, and always with the fear that her disease would return.  Is life no matter what, better than no life?  Selfishly I say yes, but, would she?  So I have to content myself with the knowledge that Alexis lived a full and happy life for 27 years, she loved deeply, lived hard and played harder.  Lex would want us all to remember that the most important things are really very simple, they are,  hug tight, eat well, love deeply, laugh till you cry, and celebrate, celebrate every single life event with enthusiasm!
 So Happy 30th Birthday my darling, I hope you had the party of your dreams.

The Waiting Room

The length of our lifespan is relatively short.  We attempt to accomplish so much in approximately 29,200 days.  We seem to be hardwired to get educated,  find employment,  find a life partner, have children, raise children, perhaps own a home.   Our desire is to leave this earth a better place than we found it, we crave fulfillment in our lives and spend a lot of time trying to learn how to be happy.  We do all this even as we are aging, the passage of time making it more and more difficult to accomplish our goals.  One wrong step, the wrong job, the wrong life partner, illness, catastrophic world events and, we run out of time.  The cards are really stacked against us, it almost seems impossible and a little unreasonable to expect to achieve and sustain these objectives and yet every human being on this planet tries.  Why?  Part of the reason is an effort to make the most out of the time we do have, to be as productive as possible.   We are like ants each generation going through the motions trying to be better than the one before, building, working, planning. This model has gone on for thousands of years and will probably continue for thousands of years to come. And yet the eventual end result for every human being on the planet is the same, we will run out of time.  It occurred to me that this current existence is really like a 'waiting room,'  imagine you are sitting in a doctors office waiting to be called in for your appointment,  you read a magazine or nap, the time spent while waiting is secondary to the actual appointment, we don't know what will happen in the doctors office but we do know that it will be much more important than the time spent in the waiting room.  Could our existence be the same?  Is this need to be so productive with our 29,200 days simply an attempt to control what there is no control of?
 Is the brief  time we spend now simply a pause in the great cosmos while we wait for what's to come? And when we enter the next realm will we finally see the big picture and clearly understand that the time spent in the 'waiting room' was just that, waiting!

We are OK!

We've come such a long way since that terrible day on Dec. 29, 2010 when we lost Lex.    The 3 of us individually persue goals and participate in the world around us.  Most importantly we are not afraid to put ourselves 'out there'.  Together we have become a strong unit.  Our home is our sanctuary, a place where we are emotionally safe.

Rick's progress has been incredible, with a desire to 'give back' through volunteering both as the President of the Men's Club of our synogogue and by raising money for cancer research by setting up  'Team Lex' for  Road Hockey to Conquer Cancer.  Danielle is travelling with a friend this summer and planning for her future.  I am now adding Alexis's beautiful graphic designs to my paintings which allows me to share my artistic journey with her.   I am proud  to be able to use her legacy in such a creative and personal way.

Although we cope with our grief independently we always come together to support and love each other.  In spite of our sadness or  maybe because of it the desire to be seen in a positive way is very important,  but inside, privately we share the tender ache of our loss.  I believe we are OK,  we don't allow this sadness to control us or stop us from living or enjoying our lives.  I'm reminded of an earlier posting where I wrote WWLD 'What would Lex do',  today 2 1/2 years later I've made a small change in this phrase,  it now reads, 'What would Lex WANT us to do?'  She would want us to continue on with our lives and she would want us to be fearless to have Ko'ach (Strength), she is watching us and I know she is proud.

Sometimes I Can't Believe She's Gone

 Sometimes I still can’t believe she’s gone
but she is
A personality full of all the colours of the world
Kindness, grace
And what a face
With a smile everyone remembers
Our girl, had it going on
She was smart, she was strong
Believing all she needed
was a positive attitude
and  we believed it to
Courage and love
She now  watches from above
Her legacy
Never ever give  up
And Live
Live a full life
And smile
always smile

2 Years Later

  I try to behave as I am expected, but my grief stays with me like a sad song that you can't get out of your head.  I am unable to stop the thoughts and memories especially the ones of her last hours, maybe I don't really want to.  I get up, get dressed, go to the gym or to art class, travel, see friends, I do all these things, I smile and laugh but behind my eyes just beneath the surface are the dark, sad thoughts that keep me up at night.  We are now years past her death, not hours or days or even months but over 2 years and just like in the movies life has gone on for everyone except Lex who is frozen.   Her face in the photographs the same, a beautiful, vibrant 27 year old face, her smile never changes, the sparkle in her eyes always there.  Only we have changed, I have changed, I'm emotionally tired, as I carry this sadness with me.  I try to remember the good times, and I do remember them but the intensity of what happened to her this terrible relentless disease that stole her from us always seeps into the good memories.  I look at the photos of a cruise we took in 2000 there we are a happy family, smiling and laughing for the camera the girls in their new clothes so excited for this holiday and I smile at the memory but then I think, we didn't know that only 10 years later Lex would be gone.  Every memory follows the same path for me no matter how hard I try and then I wonder did she have an inkling?  Could she have somehow sensed that her life would be short?  I hope not, I couldn't bare the thought of her knowing.  However, it would explain her 'lust for life'  her desire to do as much as she could as fast as she could, I used to say that Alexis 'pushed the walls' always wanting to go further, than we were comfortable with and she managed to accomplish a great deal in her life. In fact whatever she set her mind to whether it be education,  or travel she achieved her goal!  She was a force of nature! 

I am resigned to the fact that I will always mourn her.  When we celebrate the things that every family celebrates she will be missing and her absence is like a shadow something that is there but not there.  I was warned that the second year after a death is worse than the first, I didn't believe it could actually get worse, but what happens is that we become softer.  The walls we have constructed to protect ourselves from grief become weakened.  For most of the 1st year after she died I attempted to show the world that I was fine and coping well.   I was able to control most of the sadness, compartmentalize my emotions so I didn't have to deal with them but now all the memories, the worries, the anger, and helplessness are finding cracks in my wall and so in this second year of grieving I am struggling more as memories and thoughts seep into my consciousness and fall out my eyes.