Focus on the Fine

Erin and I began a Journal of Gratitude on March 1, 2008. She was in the hospital recovering from the lung surgery, frustrated and very uncomfortable due to the chest tubes that couldn't be removed as quickly as she expected and therefore unable to get HOME where she wanted to be. I thought of a journal as an avenue for both of us to try to shift focus away from the discouraging things that were taking front-seat attention, and to help deal with the bigger picture; the shocking fact that the cancer had returned so swiftly. Now, in retrospect, I clearly see it as the first example of taking charge of something within our capability, because we had just so painfully learned we had absolutely NO control over what the cancer was going to eventually do.

Every evening before bedtime we took turns writing. Together we decided to highlight a minimum of three things each day for which we were thankful, things that made us laugh, or things that made us feel good. Entries were not full sentences; just random thoughts, snippets of ideas, fragments of the day. Some of Erin's initial entries from 2008:

March 1 - Sat in the chair for 1/2 hour today. Ginger ale tasted good.


March 6 - My bedroom was decorated by Margy, Ali & Kristin (P) when I got home.



March 9 - Walked up & down the block for the first time. Facebook messages with Kristin (H).

We sat together each and every night (with the exception of the couple of weeks she lived in the dorm, when she took a journal to school, and I continued writing in our book at home), from March 1, 2008 until Thursday, November 26, 2009 - Thanksgiving Day, filling three books with literally hundreds of gifts-of-the-day. Yes, there were some days when it was so difficult to see anything good and yet we were successful on even the worst days, understanding that on those days the challenge of SEEKING the gifts was more essential than ever.

Focusing on the positives became a means of attempting to offset a portion of the worries listed in my previous blog entry. I went to the land of "what if" so much of the time. A wise one often preached, "Don't let tomorrow steal today." - a great concept if you can pull it off amidst the chaos. By working very hard I finally learned how accurate that was. Worry truly is an enormous energy drainer. The theory was, yes, things were eventually going to get bad, but RIGHT NOW they're not bad and TODAY everything is fine. FOCUS ON THE FINE. Many of my worries never came to fruition. Yes, a number of the big ones did, the WORST one did, but a HUGE PORTION of the rest didn't. For example, she NEVER had one infection or a cold in spite of all the dreaded germs floating about her often-neutropenic little self. She never fell down those stairs at school. She fell a couple of other places, but she was fine. And so the journal became one of the tools encouraging concentration on the good things each day. The goal was to put the positive spin on anything and everything we could. We mostly succeeded.

And Erin didn't worry about things the way I did. I aspired to be the lightning rod, absorbing as many of the" hits" as I could so she didn't have to, and because of that I went into "what if" mode so I could try to fix every situation before she arrived there. The joke was on me! I couldn't fix a damn thing having to do with the progression of the disease itself, and I finally learned to concentrate on what I actually could control. And so ultimately Erin was right when saying, "Stop worrying. I'm fine." She understood, so much better than I, that she couldn't control it and so she lived for the day. As I spun in circles of rumination frenzy she often calmed my fears, simply with her confident presence. It is what it is mom! I'll deal with it when I have to.

The uncomplicated wisdom and acceptance ability of youth resonates with astounding accuracy.

Erin's final journal entry on Thanksgiving included:

Being able to eat all of the delish food today.
Being able to get around easier, even though I had pain.
Having the best Thanksgiving with everyone here.

The next day, when we had to rush Erin to the emergency room, the journal was not packed. It was left at home, abandoned. We were exhausted, in shock and finally defeated. The next three weeks were spent in a fog of tending to the daily tasks at hand; the recording of blessings forgotten.


On Christmas Eve, I began a journal of my own. The intention is the same - focus on the blessings amidst the things (SHE'S NOT COMING BACK) I can't control. I began the journal by reflecting on those three undocumented weeks and decided to write as many of those things out as I could remember. I easily filled many pages with specific events and very personal experiences. Those weeks were intensely beautiful in that I saw the supreme courage and grace of a daughter who called the shots until the final moment, and NEVER, EVER gave in to the attempted authority of the cancer.

I can confidently say that as I randomly listed the positives of those three weeks, she would have agreed with so many of mine. I regret not having her exact thoughts and words, and yet know the energy to actually write just wasn't a possibility at the time. We verbalized many of them to one another during those weeks.
Just a FEW of those things are:

The compassionate care of the doctors and nurses, who did everything within their power to help us through the days.
The community that loves and supports us.
Erin continued to enjoy many of her favorite foods - she loved to eat!
Erin never lost the use of her right arm/hand, and therefore could feed herself and type on the computer, allowing her to maintain dignity and some control.
Maureen.
Liz.
Keenan.
Erin and Chris threw a ball across the livingroom and bantered in their usual fashion just two days before she died.
Kristin was the last friend to see Erin on Thursday night, and she spoke the words "I love you" to her.
Dave, Chris, Sarah, Matt, Maureen, Keenan and I surrounded her as she left this earth.
Erin was ERIN until the last moment.
And, I was blessed to have this precious daughter in my life for 18 years, 7 months, 4 days, 9 hours and 5 minutes.