Monday, August 16, 2010

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!


Gannet Girl said...

Oh my. I have so MUCH to say in response to this - do I ever get it!, but I will leave it for my own blog and for another day.

Today is a day for honoring your beautiful girl and her grace-filled and gracious family.

Oops - I see that I'm still signed on as GG. Well, you know it's me.

Anonymous said...

Hi Karen,

You absolutely do not depress me, you do and always have, inspire me. When Caroline began hospice, I came across your blog. I had thought I wouldn't be able to live without my Caroline. Your writing helped so much, mainly because I thought if you could lose your beautiful girl, and remain functioning and upright, then so could I. Truly, you were a beacon of hope.

I love Katie's pictures, such a beautiful little girl. Her smile radiates joy and love and fun. I know you miss her and I'm so sorry.

You are in my thoughts and prayers today.

Carol Herrmann
Caroline's mom

Sheri said...

I have been where you are, realizing there comes a time when you have to accept, at least in certain situations, that you do carry this in a personal way that does cause a feeling of being alone and often is lonely. In its own way though, it makes it more sacred.

Yes, you are courageous, strong and a leader in the grieving parents community. But I also find the times I feel most bonded to you are the times in which you are most vulnerable.

My heart is with you on this sad anniversary. I never knew Katie except through you. She is unforgetable. Love to you, my friend.

Maggie May said...

I am gobsmacked at the importance of this post, to me, a person who has never yet lost anyone to cancer. I deeply appreciate your bright intelligence, your steady observance, your social morality, your perseverance of growth, your clear and factual honesty, the passion you have for your daughter and how beautifully you carry the spirit of her life on in your words and action.
I hope you might consider collecting your words like this and making a memoir. I think it would be a shining light for those going through what you did.
Bless you on this day of memory for Katie, all she gave and lost, and all you give now.


Karen said...

Oh my, where to start? So many things in this I totally get. First of all, I have to say thank God for your openness on your journey into the Valley of the Shadow. You have been such a wonderful companion, comfort, resource to me. So I am forever grateful for you, your blog and your choice to stay open to process the grief. I know there are people who re-integrate into the pre-grief life, but I haven't succeeded at that either. Don't know how I ever can. I am different now--so different. My favorite line is this one: "I didn't know how to live in the "former world" without her, so I moved instinctively into the world she left." Me too. I feel so awkward in the "normal" world at times--like your dinner table conversation--I don't quite fit in anymore. Except with other grievers. So I'm resigned to stop cursing my fate and bloom where I'm planted--which is what you have done (very graciously and gracefully, I might add.)

Every family member has their own journey and we just have to flex with it, as you have done with your men. Otherwise, we incur more breakage, and that cannot be borne with all the other losses.

Your Katie is beautiful. I miss her even though I never met her. Your faith, hope and courage are beautiful. I cherish your friendship on this often lonely road. You make me feel less lonely.
Love and hugs and comfort to you today, dear Karen.

Warrior against Childhood Cancer said...

Hi Karen,
Okay, ditto what Gannet Girl said! I understand exactly what you are saying and struggle with whether or not I want to stay silent and "not" make people a little uncomfortable. I will email you soon. Let me just say, you are not stop being who you are. Your precious Katie would be so proud of you and what you are doing to help others. God bless. Sending hugs and prayers your way.

Busy Bee Suz said...

Hugs to you today and everyday Karen.
I love reading your words, you have taught me so much about things I had no idea about.
I love these photos of Katie; I love that she gave you so many happy memories.

Susan said...

I will be thinking of you today. I am one of those "let go mostly unnoticed" types so I understand that stance and you are very loving to be able to honor that for Greg.

I, too, find myself delving into stories I probably shouldn't at times but with my mommy friends if I even mention Nathan's name (say if we are talking about a baby stage or something) I can tell they are uncomforable anyway. There is no winning that one and so I just do what feels right. Hopefully I will have some friends left in the end! However, your post today has given me pause and I am going to contemplate Greg's thoughts on it.

Thank you for sharing your journey - it has been so very helpful to me.

Anonymous said...

I have been thinking about you today Karen. I logged on to simply say that and have been sitting here speechless. Your post is so authentic, honest and brave. It is beautiful. And I resonate so deeply with what you have written.

You are brave - in every way. And I am thankful I know you (though I wish I didn't - that our circumstances were different).

Thinking of Katie...

Much love to you,

ChiTown Girl said...

Wow, this post was enlightening. Unlike the other commenters, I have never experienced what you, or the others, have gone through. I know I'm blessed to never have had to experience what I can only imagine is excruciating pain and sorrow.

That said, I don't mind listening to (reading?) what you have to say about it. I get it. It's become who you are. You are a mother who's lost a child. I get it. Yes, it's sad and not always easy to listen to, but if there's something you need to express, there's a reason you need to express it. If it was too depressing to me, I wouldn't read your blog daily. :)

On the other hand, I completely understand what Gregg is trying to say. There are MANY people who just don't want to hear about it. It makes them uncomfortable, it makes them sad. I suppose that IS something to consider when having a conversation. At the same time, others need to be aware of where you're coming from, and to not put off by things you might say.

I would imagine today was difficult for you. I'll be saying an extra prayer to and for Katie tonight. I hope you were able to just enjoy the happy memories today, and not get too caught up in the heartbreak. xoxoxox

Jason, as himself said...

You are nothing but an inspiration, an angel. Your kindness and generosity and willingness to help the dying and the grieving makes me cry. Whatever your perceived misgivings and misjudgments may be--you are making a difference of the most important kind to these people who desperately need someone to listen to them, to give them advice, to sit with them, to hug them, to cry with them.

Katie, sweet Katie. Her death was a tragic, undefinable loss. But it clearly has not been in vain. She lives on in those sparkling eyes of yours and that generous soul, and every time you offer a word of comfort or a handmade quilt or a hug, I'm sure she smiles and knows that through her departure so much good is being done in this world.

I've never met you in person. But I love you so much.

Tracey Axnick said...

Beautifully written Karen.
I've never found your blog depressing... I find it inspirational. As mothers (and as mothers of children who have been crtically ill - granted, I know my son's extreme prematurity was a different situation), we walk a different path than "others", and it's hard for them to understand.

I've seen such beauty, wisdom, and profound thought in your blog... and I am thankful for it and for YOU.

I did think of you today, many times. You will be in my prayers this evening.

May God surround your heart with his peace.

christine said...

Sweet friend, am just getting on the computer today and read your blog...3 years. I am near the 3 year mark too and was walking the beach today thinking of what 3 years meant...the waves were wild today and found myself thinking of the day Sarah left too...and of the mom's I have connected with on this journey--you being one of them. quietly taking your hand in we walk...I tuck your heart in tonight---and will pray for the remainder of the minutes that mark this day. I sure hope our girls see these mom's still here...still walking, breathing...remembering their strong presence that is so missed.
I am coming soon--and hope to have some plans...and hope to make sure to get a hug while there from you.
my heart aches for your ache right now. just so you know.
love, Chris

Anonymous said...

Hugs and prayers on this difficult anniversary day, Karen.

Today's post, like so many of your entries, is eloquent, instructive, passionate, and inspiring. I always come away from your blog feeling that I have a better understanding of the road that you and too many other families have travelled. And it is a huge help for me in responding appropriately to the families close by in my life who share your path.

I marvel at your courage, resilience, ability to cope with your immediate family's differing grief responses, and willingness to give and contribute in Katie's memory.

May God continue to use your many gifts and talents for such fine purposes. Peace be with you.

Karen B.

Mary Potts said...

Dear Karen,

I don't find your words depressing either. You are one of the first ones I found down the rabbit hole when I began to get brave enough to look around before Erin passed away, to see how in heaven's name I was going to be able to survive after she left me. You, among other wise and unfortunately more experienced grieving mothers out there showed me I had a chance.

Well, here I am! Now I'm a mother whose child was taken by something out of my control. (I don't care to use the word "lost".) And guess what? I'm surviving too! But part of the reason is because I do talk about my child. I NEED to talk about her because she is and will continue to be part of me forever. And that's where blogging has helped me to join part of that "special" community out there that few can fully understand.

Everyone in my family, my husband and our three other children, are processing this in very different ways. And yes, I am the one in my family that needs to bring Erin up much of the time. The others don't. They would rather move on too.

The world that we initially feared and detested, the cancer world, by necessity became our world. I've always been one to slam myself into something head on and not dance around an issue. I guess it's the same in this case as well. You seem to be one who takes the bull by the horns too, and your wise words have helped me, and many others as evidenced by their comments.

So Karen, keep writing and keep carrying Katie proudly. She was a jewel, and I enjoy getting to know her through your stories and photos.

Bless you today. And how great that you found those words in her notebook. What a perfect gift.

Anonymous said...

I have been thinking about you all week, and saying a little prayer when I do. My sister and I were talking about something similar today on the way to Children's ~ how it is usually the parents of a sick child that get the fundraising, etc. going for research. No one wants to hear about it, just like I always found it hard to watch the St. Jude commercials. It's scary, because it CAN happen to anyone. And when it does, that Mom or Dad needs to go online and find a website that tells them there's hope, there's a life during and after cancer...and your writings do just that. As you know, even though D's been in remission, cancer will always remain a part of our lives, because IT IS a part of our lives. Every checkup, every ache or pain is not like it used to be BC. This is a scattered comment, sorry. Just wanted to say I was thinking about you ~ and I'm thankful for you. xo L.

Cassandra said...

Hi Karen,

I've not experienced the loss of a child, but your words are insightful and moving and important to me and to many others. I think you are very brave to confront and discuss ALL of the emotions and issues that accompany Katie's illness and loss. You are indeed an inspiration. And Katie is one as well--her tender yet fierce spirit is known to all of us now, thanks to you.

Prayers for you and your family.


Deborah said...

You inspire me. You are the definition of Grace. I thank God every day for my adult children and the privilege of time I have had with them. You remind me that time is a privilege...I shall not waste one minute. All my love to you, Deb

Anonymous said...

Dear Karen - I don't sign often, but i do read your blog and always find you inspiring - you tell it like it is, even the struggles with your closest family members and it shows that you are REAL!! You don't sugarcoat - you just let us all in on your journey and that is VERY inspiring. Thank you for letting me "get to know" Katie thru you - she is so special. I too have troubles even bringing awareness to others because when i talk about this cancer world I see the uncomfortable glances - it is too sad to hear about, but i can't even imagine living it, so why not bring awareness to it so eventually no one has to deal with a child getting cancer. You are one brave soul - don't ever forget that you are never alone - all of us in cyberspace are thinking of you on this day and everyday.

Kay said...

Wow..this is one of the most 'spot on' posts I have ever read regarding this gritty topic. I soo get it. I feel like the 'odd girl out' many times and have to catch myself not to launch into this story or that story about our journey or somebody I know that's going through what we went through. It's hard to realize how I would have felt 'before' our experience, if someone had said those things to me. It's one reason I never talked to other families during our journey or right after. I knew nobody wanted to hear a story of a kid that didn't 'beat it' because I knew with every breathe they din't want their kid to be 'that kid...the one that didn't make it'.

I meet with a group of ladies to scrapbook and even a discussion on photo storage brought up my desire to catalog all my pics of the little man. I told how/what I was planning on doing and yes, I could hear a pin drop in the room. I felt bad for bringing it up, kind of like you.. BUT this is my life..and it's YOUR life. I can't act like I didn't have him. And that is where the rub comes in. How to honor the one that is gone without living in constant grief or trying to totally act like it didn't happen. ??? Haaaaard!

But don't ever feel like you're being a downer when you come HERE to talk. That is one reason I started a blog all these many years after our loss. I needed a place to tell the stuff I couldn't always tell IRL friends. Sometimes the stories are just too much for them. And I get that too.

I love the pics of your beautiful Katie. I will never really understand the why's. Hugs to you as you contemplate and think and ache and cry... or whatever your heart desires on this day.

(On a lighter note, we would love a day in the 90's. We've been over 100 for-evah!)

Anonymous said...

I've been reading your blog for quite some time. I have no idea how I found your blog, but suspect it was a link from various cancer blogs or sites. I have stage IV breast cancer and find strength and comfort in your writings about your cancer journey with your beloved Katie. You have never been a downer, just openly expressing your feelings and thoughts. People deal with grief in different ways. You should never compare yourself to how others handle grief. I'm sure the loss of a child is worse than anything I can imagine, so I wouldn't worry about how people react to your thoughts and feelings. Once you've experienced cancer or been a part of the experience you are never the same. There is now a new "normal" for you and people should understand this. Thanks for sharing all of your thoughts; tragic, sad, happy and inspiring.

Angela said...

Dear sweet Karen - I do not find your words depressing - and have felt honored and prviliged reading and sharing some of your life through these last three years. We talked a lot about Katie, especially yesterday, and how much we missed her, loved her, and wondered what she would be like this summer...(could I have talked her into babysitting the kids??? :))

Sending you hugs, and love...thank you for your honesty...


Anonymous said...

Karen—thank you, thank you, thank you for opening your heart and sharing your words. It is a blessing a privelege to be able to read them and thinking of you, your family, and Katie—not just this week but always. I love reading your story, always, and like so many others have said before, your honesty, truth, love, and grace is inspiring—and I am proud and honored to know you, your family, and know Katie's story. Sending love and light xoxoxo, Jiffy

Daisy said...


Your words are always an inspiration to me; your vulnerability is so very much appreciated. I think of you and your family often and especially on anniversary days.

Karen @ From Paradise to Plan B said much of what I would have liked to say if I'd had the words.

(((((Karen and family))))


LeighSW said...

Grief is such a process. It sounds like it was the right time for your AHA moment. I'm glad that you and your family can speak openly and honestly about you all honor and mourn Katie in different ways. My prayers are with you. said...

Wow. You are so brave, to share this with us -- as you have shared so many other aspects of your journey.

I'm sorry you feel alone, still, despite the growing community of people you know who share your particular loss. Just remember that you are still in the hearts and minds of those of us who knew you "before." Even if you feel alone, we are all still there with you, grieving with you, and growing with you.

There really is no one right way to walk this path -- there can only be the way that's right for you. And those of us who can handle it are still willing to listen -- so don't feel you have to stop talking.

luvmypeanut said...

I missed this by a few days, but I wanted to comment on your beautiful, heartfelt post. We all grieve in our own way, in our own time. You've done it gracefully, beautifully and generously. We've all been touched by Katie's beauty and yours.

Your stories and memories are not depressing, but insightful and yes sometimes painful and always honest. Never apologize for that.

I never knew Katie and I am sad for that, but I am so glad I am getting to her mom. Yes we're strangers, living far apart, but you give a bit of yourself in every post! Someday I hope our paths will cross!

Much love to you and your family!

Mary said...

I didn't read any of the comments so I may be repeating everyone else, but your posts have never depressed me, and your strength always lifts me and gives me hope. BUT, I also know that feeling. Not two weeks ago I was in a similar social situation and I saw eyes roll. It was awkward and Paul and I had a similar talk afterward. I am realizing that I need to choose my audiences better.

I'm sorry I missed this post last week, but I'll keep you and Katie in my heart.

rebecca said...

dear one,

your beauty and grace filled me the first moment i discovered you. you walk with courage and give in a way that is truly profound, your willingness to be present. utterly present and willing to walk in the shadow of loss and comfort those who have no choice but to engage that inevitable path.

many are called...few are chosen. you are a chosen one.

you are a compelling force of bright life....
i am blessed to know you.

Kellie said...

This is my first visit to your blog. So, this is the first post of yours that I've read. While I do not know you and did not know your daughter, I felt compelled to comment.

I applaud you and greatly admire you for being so open and honest about your grief and how you have chosen to live with it/move through it. Being brave and being a leader - you seem to be both - are often lonely roles to take on. And, quite often, you never get to meet those whom you inspire. Hopefully, your blog has given you a way to mitigate that loneliness - at least a little - and to connect with those whom you've so clearly inspired (including me).

My wish for you is that your friends can somehow understand and respect your grieving process in the same way you are working to understand and respect theirs. If not, please know that you are not alone. There are many people who are willing to witness your grief and not flinch in its presence. I'm honored to be one of them.

Prayers for you and for Katie.