Hope is the thing with feathers...

Hope is a word that we use all the time.  "I hope I get a good parking space", "I hope it doesn't rain", "I hope these cookies are tasty".  It wasn't until I really needed to live with hope that understood that true meaning of hope.  Hope is believing in something that may seem unbelievable. Hope is crying uncontrollably because you don't know what else to do, but at some point smiling again.  Hope is living with the fear but not allowing the fear to take over you.  Hope is knowing that things will change, eventually.  

 

Hope by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

This poem by Emily Dickinson speaks to me.  Amazingly, I only recently read the entire poem.  I had only ever heard the first couple of lines, and although I find meaning in those, the whole poem means so much more.  Take some time with it.  Read it. Read it again.  What does it mean to you and your world?

Faith

I am sitting outside the NIH Chapel doors trying to organize my thoughts on faith into words and complete sentences.  A fitting place to be seated but I must confess it wasn't until after I selected a comfortable looking chair that I fully realized my proximity to the chapel.

At some point during my battle with cancer I turned to my husband (the son of a minister) and said, "I'm finished with God.  There can not possibly be a God that would allow this much pain and fear to go on in the world".  Adam, very simply, nodded and said quietly, "ok".

It was during this time of giving up my religious faith that I discovered my need for faith in something.  Something greater than the faith that chocolate would always taste good.  I found my faith in my strength, my love, my power, my humor, and my ability to take what was being thrown at me (even when horribly difficult).

It took about two weeks of "not believing in God" and instead believing inand having faith in myself, to find God and my religious faith.  Don't misunderstand me, I was still (and continue to be) mad at God because he clearly can't fix all that I deem fixable.  But, regardless, I have complete faith in His love for me, just as I have complete faith in my own love for myself.  And in that I have found healing.

Faith & Hope

There is a great deal that I want to say on the topics of faith and hope but, to be honest, I'm having trouble organizing all of my thoughts.  So, instead of rambling along and scaring away readers I thought I'd start by posting some of my favorite quotations.   A longer post with more of my own words will follow soon.

Faith is taking the first step even when you can't see the staircase.
-Martin Luther King Jr.

I would rather err on the side of faith than on the side of doubt.
 -Robert Schuller

Miracles happen everyday.
 -Unknown

Where hope grows, miracles blossom.
-Elna Rae

There are only two ways to live...one is as though nothing is a miracle...the other is as though everything is. - Albert Einstein

"Mommy, Did you win the race?"

Happy 4th of July!  Once again, I say, what a difference a year makes.  Last year on the 4th I "ran" about 20 yards while holding my daughter's hand in a little kids fun run.  At the time I weighed a little over 100 pounds and was on a fairly strict diet that wasn't particularly conducive to flavor, or second helpings.  I was suffering from steroid induced insomnia and had not slept for more than a 3 hour stretch in days.  And I was fairly anxious about getting to +100 days and getting to go home to Massachusetts.

This morning I got up and ran in the Hingham Road Race with my friend Bryan (he was incredibly patient with my pace...and quite enjoyable to run with).  So....last year 20 yards and this year 4.47 miles!

At the end of the race my daughter and husband were there to give huge hugs and smiles.  I picked up my little girl as she asked me "Mommy, did you win the race?"  I was just about to explain to her that, in fact, lots of people had finished before more and a few people finished after me, when I stopped and really thought about the question...."Yes Grace, Mommy did win the race".  She kissed me and I swear in all of her 4 year old wisdom she understood exactly what I meant.

In the spirit of this story, I want to announce to all of you that I will be running in the Maine 1/2 marathon on October 2 with Team in Training.  My sister, Susannah, is the Boston City Team Coach and in addition to being the "Honored Hero" for the team I decided to give it a go.  In doing this race in October I am committing to raising money for The Leukemia and Lymphoma Society.  I am including the link to my fundraising site here as well as at the top of my blog.  Please remember that every little bit helps and every dollar I raise is another dollar that just might help some one like me to win the race.  http://pages.teamintraining.org/ma/maine11/enaylorek4

Today is the first day of the rest of my life

How many times in our lives do we think of "today" as the first day of the rest of our lives?  I know I thought that when I graduated from high school, and again at college graduation.  I certainly thought that my wedding day was the first day of the rest of my life and the day my daughter was born (exactly 4 years ago) was without a doubt the first day of the rest of my life.  At each of these occasions I was sure that this was it, the real beginning, the time I had been waiting for to get my life going. 

On April 6, 2010 I actually experienced the first day of what will hopefully be the very long and healthy rest of my life.  Doctors in more than one hospital were fairly certain that I had less than three months to live.  Fortunately, a team of doctors in Maryland said lets transplant her anyway.  I was young and they wanted to give me a chance.  It turns out it was just what I needed, a chance with a new immune system.

Today, every day is the first day.  Everyday is a day to wake up and make choices about my life.  Everyday is the beginning of something amazing.

Is today the first day of your life or are you waiting for the that day to come along?  It is already here, my friend, embrace it.

Riding with Grace

I am a huge Tim McGraw fan!  I have been for many years and will continue to be for many more years.  Its not just the cowboy hat, although that has its obvious draw, and its not just the fact that one of his daughters has the same name as mine, and its not just the fact that I love his music.  Its all of these things in some combination that I think is changing every so often.  I like Tim McGraw so much that the song my husband (I've made him a fan too) and I danced to at our wedding was "Set this Circus Down".  The song that I grabbed on to with my cancer diagnosis was "My Next Thirty Years".  There are countless other examples of Tim McGraw songs that I can set to instances in my life but that is not what this blog is about.

This blog post is about living and, as you might have guessed, is a bit inspired by another Tim McGraw song "Live Like You Were Dying".  I love this song.  I love it now and I loved before I knew what it meant to be dying.  Its a good song.  But I'd like to change the lyrics.  "Live Like You Were Dying" is about all the things one would do if he/she found out that they only had short time left to live.  This list includes skydiving, bull riding, fishing, and being a better friend.  One line in the song says "And he said someday I hope you get the chance to live like you were dying".  This is what I would like to change.  All of the things listed are things that we should do, or at least the concept is of things that we all should try out.  You may not have any interest in skydiving (I don't) but I am trying to learn French and quite possibly training to run a half marathon (more on that in another post).  I look at all of these things as living like you're living.

Too many of us walk around each day going through the motions and forgetting (or not even realizing) that we can enjoy more.  Yes, we must work and we must take care of our responsibilities but this does not mean that we can't also learn to play the ukelele or bike across the country.  This is living.

I have faced dying and for me it was important to live like I was living and let the rest sort itself out.  Today I strive to remember each day that I am alive and I am living.

Now reader, take a moment to get comfortable and start imagining a warm spring day near the beach.  Imagine the wonderful smell of the ocean breeze and the occasional smell of coppertone.  Add in the feel of a bicycle in the wind, the sound of tires on pavement, and pedals spinning.  Imagine a little one sitting in a kid's seat on the back of the bike shouting "faster Mommy, faster".  Imagine the smile that you would wear as you pedaled the bicycle and remembered to live each day as if you are living, because you are.

I like to think that I face most days with grace and strength, and I know that I face everyday with Grace.  She is almost 4 and the perfect reminder to go faster when necessary and slow down when needed.  Each day, on and off the bicycle I ride with Grace.

Smell the Mud

Spring is my favorite time of year and it always has been.  It possibly stems from having my birthday in early May but having grown up in Maine I think its more likely that spring meant we were done with the snow (most years).  I love the sun, the temperature, the flowers, the blooming trees, and most of all the smell.  In New England that smell is mud but I love it anyway.  Spring this year has been more special to me than any other for a number of reasons including. 

1. I now have two spring birthdays.  My transplant anniversary and my actual birthday.
2. I missed spring last year.  I was inside most of the time and fighting for my life.
3. We're back with the New England mud!  Last year we were in Maryland and it was already hot!
4. We have little doubt that this is one of many more spring seasons that I will enjoy!

Tomorrow I will head down to Maryland to check in with my team and see if, once and for all, we can figure out why I've been spiking fevers seemingly at random.  On the one hand it seems like a long trip for a few fevers but on the other hand where better to go for a fever than the place that saved my life!  The hardest part of these trips is being away from my family for "two sleeps" (that's 3yr. old speak for "two nights").  The second hardest part is the emotions that are brought up each time I travel to NIH.  It is easier today than in was last fall but going back to the place where I spent so much time, so very sick, is...difficult. 


This trip will be different, because it is spring.  I will return to New England on Friday and  it will still be spring and I will stop and smell the mud.