Three Years

Today is August 16th (Maribeth & Alan's wedding anniversary - Happy Anniversary, you two!) - the day that Katie passed away, three years ago, here in our home.

It's a thought that causes a deep, slow breath, but I can breathe with it. I'd say that's a reason for gratitude.

Many things have happened in the three years since she quietly took her last breath, in her room, as I was lying beside her on her bed, with Gregg and David on her other side.

We are still learning how to live without her. It is very hard to learn to do this graciously. It's hard to learn it gracefully, and it's hard to do gracefully. It's just HARD TO DO.

We had a busy weekend, which was a good thing. I had a lot of laughs, some pain, and a huge revelation.

On Friday, we had the pleasure of hearing Chris Isaak in concert at the Ste. Michelle winery. We loved the event last year, and were fortunate to be invited by Smileygirl, her husband, and the friend I call "my Chicago boyfriend" (it's okay - Gregg knows about this).

One of the things that comes with living out here is the fact that we are dependent on the Washington State ferry system to get to Seattle. (This is why we had to move to Ronald McDonald House when Katie was sick.) We can drive around the south end of the Sound, but a 35-minute ferry ride is preferable to a 2.5 hour drive, and the boats do not run 24-hours a day. On Friday, one of the boats was having steering trouble, so we watched the WSDOT ferry site to be sure we could catch a boat to meet Gregg on the other side; repairs were made just in time. We drove to the east side of Lake Washington, and ate dinner at a brew pub near the winery. Then we met the group (about 10 people) and went through security to enjoy the show. It was a blast - all of us had a wonderful time. (Thank you, Laura, Tom & Rich!)

On Saturday, we had plans to visit Dr. B. and his family. They had invited us over for a "farewell" dinner for David. In preparation for our visit, I made a photo album for them, containing photos from the very beginning of our friendship - which happened to be in the ICU at Seattle Children's Hospital - through last month's overnight and trip to Port Townsend. I included pictures of Katie and our family in the ICU, in order to show them how pivotal Dr. B.'s presence was to us from the very start of this nightmare.

The following photo started an argument between Gregg and me:

It's us, in Katie's first room in the ICU, shell-shocked, unable to eat, and sleep-deprived.

As I was putting the album together, he looked over my shoulder, and laughed. This is by no means a funny photo, so I knew that laugh meant something. I asked him why he was laughing. He said something about being surprised at my choice of what to include.

I nearly burst into tears, but instead, I angrily asked him why he was being so mean. I told him clearly that I didn't like it.

A few minutes later he apologized, and I said I accepted it, but I felt like crying for about half an hour afterward. I was trying to thank the B's, to show the genesis of our relationship, to honor Katie's memory and her part in bringing us together. This is particularly important to me, because Dr. Mrs. B and "the dudes" never met Katie. (Dr. B. and Dr. Mrs. B. are both doctors.) Of course, I wanted to include Katie in the photo tributes.

Gregg clearly did not get the point, and I felt I was being mocked for my sentimentality.

It hurt - deeply. I felt alone.

We stopped at the Pike Place Market to buy "Monster Cookies" for the dudes, which allowed me about 5 minutes alone with Gregg to discuss this. That helped, and we felt at peace. We made our way to R.E.I. so that David could buy a new, laptop-friendly backpack for college.

Dr. B. had worked at the trauma center all day, and then came home to make a fabulous prawn-pasta dish for us, while Dr. Mrs. B. made a delicious salad. David and "the dudes" played ping-pong and some kind of foam-dart gun tag, regardless of fact that the temperature was in the 90s.

We had a lively conversation that ranged through many interesting topics, and (as always with the B's), I heard things that I was glad to learn. As we sat down to eat the beautiful dinner together, I felt very happy. After the main course, the boys left us and it was just the two couples talking. I related two stories concerning people I know, centering on their children  - children who have cancer, and who are doing or saying things that inspire me.

There was an awkward moment, when I could see his face fall, her eyes tear up, and Gregg's eyes get a faraway look. It was too late to stop my story, but I had an "AHA" moment.

Something in my conversation, which seemed so natural to me, was disturbing everyone else.

I think of myself as a tender-hearted and sensitive person who is also very strong. I would NEVER intentionally cause pain to anyone, but I have learned to work through powerful, difficult times and emotions. I knew that all four of us have those qualities in common, but apparently, my words were too much for the others.

I suddenly felt different, and alone (again), and as if I had done something quite wrong, socially. It hurt.

When were were on our way home, I asked Gregg if I had embarrassed him, and he said, No. But we discussed the matter further on our walk the following morning, and Gregg pointed out a few key things to me.

My world, and my life, are now centered in cancer-issues. My colleagues and friends are those whose children are dying, or whose children have died - grieving people. My work, for the past 3 years, has been writing, listening, studying, praying, speaking, offering understanding/help to others, volunteering, processing and staying open - to my own grief, and to the bereavement of others. The reason I've approached it this way is to keep the wound "open" to cleansing and healing, to prevent infection (bitterness) from setting in. Hiding it, or hiding from it, will not allow healing, in my opinion. While I may rest from it, I do not put it away.

By contrast, Gregg and David have approached their lives (and their grieving) by moving forward, by spending as little time as possible dwelling on the grief, and little time going through their memories of Katie - especially the last year of her life, which was so difficult.

Gregg told me that people who are parents, and who have not been bereaved, do not want to hear the kind of stories I was telling. He said it upsets and depresses them to think about it (evidence:  the responses that evening). He said that I might need to start filtering what I say, and keep the grittier stories for him or for my grief-community.

I realized that I have spent so much of the past four years in the cancer ward, the cancer and grief community, and ALONE, writing about it, that I may have lost perspective on how the rest of the world lives and thinks.

Selfish? Self-centered? Survivalist? Bereaved? Narrow? Necessary? I think so.

Have I become like a "grim reaper," socially awkward and insensitive to others? I hope not.

Why have I been so deeply involved in the world of cancer and bereavement for the past four years? Because I knew NOTHING about them, and then received a crash-course by being plunged into their midst. Because I don't want people to suffer alone. Because my girl's life experiences taught me that another world exists, and I went into that world with her. I went into the world of cancer with her, and then she went out of this world without me. I didn't know how to live in the "former world" without her, so I moved instinctively into the world she left.

On this 3rd anniversary of Katie's passing, I decided NOT to make an issue of the day, because I know that Gregg wants to let it pass, "unnoticed." While this is not possible for some of us, I honor his feelings. To show you how complex this is, I spoke to David about the "AHA" moment I had as a result of the conversation on Saturday night, and he agrees with Gregg. However, he also told me that he wondered why we hadn't planned anything to mark the day of Katie's passing! So you can see, again, how difficult it is to walk through this new life gracefully. Birthday, death day, admission day, diagnosis day, surgery day - all are deeply embedded in our psyches, and all mean something different to each one of us.

Now that I am starting to go out more, to socialize, to meet people, to apply for jobs, I may need to take a different perspective, and allow Gregg's thoughts to inform me. He said it all kindly, and with love. I could see that he and David have been re-integrated into their former world for the past 3 years - Gregg went back to work, and David to school, within three weeks of Katie's death. I have stayed at home and gradually re-entered the world, but perhaps not the world at large, the world where most people live and work.

I like courageous people. When life is scary and difficult, we need people with experience, courage and compassion to walk with us, so that we can walk through the valley of the shadow. I work so that I can be one of those people.

Thank you for bearing with my grieving, my stories, my lamentations for the past three years.  Thank you for your companionship in this dark valley. I hope that my journey inspires (and does not depress) you.

I received a gift from Katie yesterday. As I was looking for a place to write these notes (longhand), pulled a notebook from my bedside table. It was one of Katie's, and I thought it was empty.
It wasn't.
I got to read her jottings from well before she got sick, and I felt a familiar rush of enjoyment in her passionate, tempestuous, sincere, loving and hilarious nature. It made me miss her, and it made me grateful to have her as my daughter.

I love you, Sweetie, and I miss you!