Showing posts with label community. Show all posts
Showing posts with label community. Show all posts

Thursday, July 24, 2014

Letting Go in Order to Comfort Others

Today, I went through our house and selected items to donate for the hundreds of people whose homes have been destroyed by wildfires in central Washington. I put toys, books and clothes into bags - four bags full. 
I'm also donating these items, which belonged to Katie.
 Breathe.

These are some of my favorites of Katie's clothes. I washed them before packing them. It was odd to wash her clothes again, especially items that I have laundered so many times for her. It felt odd because I wasn't doing it so that Katie could wear them. 

It was just odd.

I can't think of a better reason to part with these clothes than to give them to families who have lost every single thing they own...but it still takes my breath away.

I hope our clothes, books, toys and (especially) Katie's clothes will be a blessing to the families in need. They will probably never know what these items mean to me, but that is not important. This gift is to help comfort them in their loss, as so many people offered comfort to us in ours.

Thursday, September 6, 2012

September is the Month for Gold


Did you know this?

Everyone seems to know about October being Breast Cancer Awareness month, from the pink ribbons and the stranglehold that one very well-known advocacy group has on marketing. While I am all for advocacy and awareness, I am not in favor of one group trying to "own" a symbol which has the potential to help lead to cures for ALL types of cancer. But I digress...

September is the month in which people who have been touched by pediatric cancer get to turn a light on the topic. If we can talk about breasts and prostate cancer, surely we can shed light on the reality behind the statistics:
CANCER is the #1 cause of death  
by disease among children.

That's an ugly statistic, and it is even uglier when you have personal experience with it.
If you knew that there was a serial-killer of children on the loose in your community, what would you do? Would you form a neighborhood watch, find out all of the information you could, and do all in your power to keep your children safe? Well, there is a serial-killer out there, and it's called cancer. It's a variety of diseases, all grouped under one name.

What if the murderer got hold of one of your kids - say, kidnapped one of them? What would you do then? Would you try to pay the ransom, or call detectives and try to outwit him? Would you try anything and everything to free your child and bring her home safely? What if the only way to set your child free from this assassin was to poison her, or maim your own precious one? Would you do whatever it took to save her life?

I'll bet you would...and that's exactly the choice we had to face. We tried to save Katie using the only means available to us, but it wasn't possible. She suffered terribly, and she died anyway. And it happens like this every day.
Artwork by Heide Randall, mother of Jessica. Katie is in the 2nd row, 4th from the right.
Now, we're trying to find ways to save children (and adults - it benefits everyone!) that are NOT poisonous, and that do not cause long-term disability. There is a miracle-cure on the horizon: immunotherapy (T-cell therapy). It's happening now, right here in Seattle at the Ben Towne Center for Childhood Cancer Research, and it needs our support.

If you can give to research, please do. If you can't give, please tell someone - telling even one other person makes a difference. And if you are going to tell someone, please let them know about my book, which describes the way it really is in the world of pediatric cancer. Or you could give them a copy, either in Kindle or paperback format.

Thank you!
Artwork by Heide Randall

Thursday, February 2, 2012

Panda and the True Value of Camp

You might have noticed a new blog on my sidebar, called Kathryn Panda Bradley. It is a blog about someone I met at Camp Goodtimes West. Everyone on staff has a Camp Name, and that is how they are known by all of the campers and other staff. Panda is the Camp Goodtimes name of Kathryn Bradley.
Photo of Panda by Paul Dudley Photography
She had cancer when she was young, so she first attended Camp Goodtimes as a camper when she was a child. Later, she became a staff member, along with her brother, who is known to all as Loop.
I don't know either Panda or Loop very closely, but I know them from the various times I've volunteered at camp or on Da Boata (by the way, my Camp name is Truffle). Both of them are warm, friendly, humorous, open, kind and likely to be dressed very crazily, as is normal for camp. I recall a brief but meaningful conversation I had with Panda one day last summer.

Panda had a recurrence of cancer, and she has been in treatment. Recently, she moved home on hospice care. My heart has been with her family, as we have walked the hospice path with our own daughter. I just received word that Panda passed away this morning.

Why am I telling you this? Because it made me realize anew that the impact of Camp Goodtimes goes beyond what I understood when our children attended in the summer of 2007. It is much more than a week of fun and craziness which helps children who have cancer (and their siblings) realize what cancer cannot take from them...it goes far beyond that. Camp creates an extended family of people who really and truly care about each camper and staff member, forever. Not just for fun, but in sickness and in health, in remission and in relapse, until death and afterward. I know this, because I have felt this love and caring directed toward our family when Katie died, and I have seen it come alongside other children and their families when they are dying. It's not just about the Goodtimes - though there are plenty of those. It's about caring for people who touch your life briefly, yet touch your heart for all time.
Katie and friends at Camp Goodtimes, 2007

It may be part of the reason why Katie asked us to scatter her ashes there.
To Panda and her family, to Codi and her family, to Gloria and her family, to every Camp Goodtimes camper, staffer and his/her family: you will always be loved and remembered by your Camp Goodtimes family. I am so thankful that we joined that family in June of 2007! Though it means suffering grief alongside other families (like ours) when a staffer or camper passes away, it also means that no one has to suffer alone...and that is worth it. It is also a reason for gratitude, and a good reason to support this camp.
Katie at Camp Goodtimes, 2007
Whether you are a fan of the American Cancer Society or not, giving directly to Camp Goodtimes is more than a good investment; it is a gift that lasts forever in the hearts of children and their families. It creates community, and opportunity for love and happiness when people need it the most. Please consider supporting Camp Goodtimes West - visit this website to find out how you can do it.

And to Panda, Loop and family:  I send love and prayers for comfort in your hearts.

Monday, January 30, 2012

Recuerda mi corazon

Do you know rebecca of the recuerda mi corazon blog on my sidebar? She is a gracious artist and supporter of other artists, and right now she is raising awareness and funds to help with medical research about a rare disease of which she has firsthand knowledge.
If you have a moment, please follow this link to read her story: http://corazon.typepad.com/recuerda_mi_corazon/2012/01/walk-with-me.html

If you are able to help, perhaps you will be moved to do so in thought, word or deed.

So Much Fun

I made a craft last week. I haven't done anything like this, or this messy (not counting cooking - I'm a very messy cook) in a long time. It was so much fun!

I had been waiting for weeks to try it - saved the link from Meg's whatever blog, bought the supplies, assembled them, and finally, found time to do it. It felt satisfying in an "other part of the brain" way. I've been so busy with words for the past months that it was lovely to immerse myself in pure color.

Here is a link to the instructions, in case you want to make one of your own, or share it with someone else. If you haven't visited Meg's blog before, you might want to spend a little time searching and reading. She is fun, inspiring, kind and REAL.

We went to a couple of parties this weekend. Our neighbors have a backyard that has been lovingly planned and executed; they have a sort of "outdoor living room" concept, with patio, hot tub, different levels and areas to gather. The crown jewel of their back yard is the new "bug hut," a gorgeous, one-room solid-wood building with screens for windows, a wine rack, stereo and propane heater inside. It's a writer's dream. They also have the best fire pit I have ever seen:  it is made from one-half of a buoy - probably four to six feet in diameter, and two or three feet deep. It's more like a cauldron.
File:Iron Buoys Great Barrier Island.jpg
Examples of buoys I'm describing (wikipedia image)
We had chili, snacks and beverages, and sat out under the stars around the fire. Did I mention that the temperature was below freezing? Yes, there was frost on the ground, but plenty of warmth - including food, friendship and conversation - by the fire.

Last night was the birthday of one of our Camp Goodtimes friends, Chad (a.k.a. Putt Putt). Chad's girlfriend Ann Marie hosted about 20 of us for delicious, homemade pasta, meatballs and sauce - two kinds! - at her mother's home. It was fun to meet more of their friends, visit with our Camp buddies, eat, drink and celebrate a wonderful, generous man whose heart is huge. Happy Birthday, Putt Putt!

Now I am making soup and getting ready for the carpet cleaners to arrive tomorrow - HOORAY! - we need them.

Tuesday, August 9, 2011

Ocean Breezes

Sunset, Tofino, B.C., August, 2007
Through this wonderfully-interconnected blogisphere, I met Jim of Ocean Breezes. Jim's blog is refreshing, peaceful and a gift to the eyes. His photography overflows with beauty and clarity, and his writing voice is gentle and contemplative. I loved his recent posting (about dealing with sadness) so much that I want to share it with you; you can visit Jim by clicking HERE.

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!

Sunday, December 6, 2009

Grief and Faith

My friend, Michelle Tucker (Henry Tucker's mom, and co-founder of Team Unite) posted a link to a site called Proactive Grieving on Henry's Caringbridge page.
If you are grieving, and wrestling with your faith-life paradigm in the midst of your grief, I recommend reading this beautiful article by a grieving dad.

A blog-friend (and fellow grieving mom, also named Karen), posted this lovely piece about our community. Her words express my feelings, and her image of the "quilt of comfort" touches a deep place within me - especially because of Katie's Comforters

As my blogger-friend Renee and her family say, "Together Strong."

Tuesday, September 29, 2009

Gannet Girl


"There is only one thing I want to know. I want to know your story, and yours, and yours. I want to know how you survived, or didn't. I want to know about those hours after 4:00 in the morning, when you wake up and stare at the ceiling, or read email, or try yet another Russian novel. I want to know what it was like when your child died, what it was like when the world broke apart. I want to know what it is like when you climb a mountain or drive to the coast and your child is not with you. I want to know whether your laughter feels different, whether your sight has changed. I want to know what you have to say about this part of the journey, this minute, knowing full well that in the next one your words might be completely different. I want to know about the moments when sheer, raw courage takes over ~ the moments when you put your feet on the floor next to the bed and stand up. I want to know about the moments right before that, the moments of sadness so deep that you cannot push your feet out from under the covers. I want to know how we are going to do this for years to come."
Gannet Girl posted this. Gannet Girl's son died from suicide, just a year ago. Her questions deserve answers, and in answering them, I find truth and comfort.

I want to know how you survived, or didn't.
I don't know, except my heart is still beating, so I must have a reason to be here.
I want to know about those hours after 4:00 in the morning, when you wake up and stare at the ceiling, or read email, or try yet another Russian novel.
I take an antihistamine before bed, which helps me to stay asleep. If I wake and can't go back to sleep, I go to the bathroom and read, or stay in bed and pray a prayer by heart, and the process usually puts me back to sleep. I try to sleep at night, and not to nap during the day. Lying awake at night leads to flashbacks, and flashbacks are not good for me.
I want to know what it was like when your child died, what it was like when the world broke apart.
Oh, my word. This is so hard. It was quiet, it was peaceful; it was sudden. As we were gently moving her in her bed, she said "When you do that, it makes it hard to breathe," so we laid her back down and gave her a bolus of morphine (which helps ease breathing). We asked if she was in pain, and she said she wasn't. She looked right at me and said, quietly, "You stay with me." So I lay down beside her as she closed her eyes. I asked if she could feel me there, and she nodded "yes." Then her breathing slowed, she opened her eyes wide and began to whisper to someone:  "It's been two years," or words to that effect. Her breathing was easy, but it continued to slow, until it stopped.

We were just stunned. Today? Now? What? Was that it? Shock. And then washing her beautiful, pre-teen body, putting lotion that she liked on her skin, and fresh clothes that she loved. Cutting a lock of her hair, and apologizing, because she was growing it out after losing it to chemotherapy. Sitting for hours with her, looking at her lying on her bed for the last time, letting the undertaker in. Letting the big cat in, seeing him walk across her legs for the last time, giving her a "head-butt" cat kiss, and seeing him flop down beside her body, as if to say, "Now what?" Leaving her room, holding each other (as a three-some, for the first time), because we could not bear to watch them take her away from home for the last time.
I want to know what it is like when you climb a mountain or drive to the coast and your child is not with you.
It feels wrong, it feels empty, it hurts. Then, it feels as if she would want us to do those things, and later, I see signs of her with us:  butterflies, heart-shaped rocks, sparks of light - things that tell me of her continuing love for us.
I want to know whether your laughter feels different, whether your sight has changed.
My eyesight is worse now than it has ever been. I have always had very clear eyesight, but it's more blurry now. My "seeing" has changed, too; my humor has a dark edge to it. Very dark.  Some laughter is fuller; I am funnier now, I think, than ever. But there is definitely an edge to it. And I am not as willing to make excuses, for myself or for others.
I want to know what you have to say about this part of the journey, this minute, knowing full well that in the next one your words might be completely different.
This part of the journey - right now - is worse than I could have imagined, because I am still sadder than I had dreamed I could be. I don't like living like this. I don't like living with depression; I don't want to be a "blight on the landscape," a "walking wound" to myself or others. I cut myself off from socializing, because I don't want to hurt others, to be a drag. I think, "I am dreary, I am a drip; I am depressing and boring. I've been grieving for two years, and it hurts as much as ever." I accuse myself with mean thoughts (as friends put it to me recently, "gnawing off my arm so I can beat myself with it"). This is not my natural way of being...but what is natural about watching your child die, allowing her body to be burned, scattering her ashes?
I want to know about the moments when sheer, raw courage takes over ~ the moments when you put your feet on the floor next to the bed and stand up.
Those are my "f*** you" moments, the "f*** cancer" moments. They are also the "God, help me" and "Thank you, God" moments. I want to put beauty, love and comfort back into this world, the world that cancer is robbing daily of beauty and love and comfort. In those moments, I feel that I will NOT allow cancer to have me, to steal what belongs to me, to take my sense of humor. I don't know why I'm still here, what God intends to do with me, but I am still here, so I must get up.
I want to know about the moments right before that, the moments of sadness so deep that you cannot push your feet out from under the covers.
Those are especially the "God, help me" moments. "Thank you, God, for..." helps me, in those moments.
I want to know how we are going to do this for years to come."
I wish I knew the answer to this. I suppose it is, "One breath, one moment at a time, by the grace of God, until the breath comes no more."

Thank you for asking, Gannet Girl. I hope this brings some comfort and community to your grieving for your beautiful son!