Beautiful & Terrible

DMG skydive 3

My friend Robin C. has a new name for her blog: Beautiful and Terrible. You may know Robin from her Metanoia or Gannet Girl blogs. She is a gifted writer, a pastor, wife and mother. Two of her children are here; one is in heaven.

The title of her blog comes from this quote:

“Here is the world. Beautiful and terrible things will happen. Don’t be afraid.” ~ Frederick Buechner, Beyond Words: Daily Readings in the ABC’s of Faith

This intersection of beautiful and terrible is where I find myself right now.

“Don’t be afraid” is not always as easy as those three words sound.

Looking at the photos of David standing on the pontoon of that helicopter in Switzerland, looking down thousands of feet – knowing that he had a parachute and was strapped to a professional skydiver, but that accidents can happen – brought back the fear of 2006-7, when Katie was in the hospital, being treated for cancer. Post-traumatic stress reared its head; I felt the vertigo.

I found the photos of his helicopter ride – and the jump – both beautiful and terrible. The natural splendor of the region, the snow, the blue sky at dusk, the raw emotions of anticipation, fear, exhilaration and joy on my son’s face – these are beautiful. The fact that he could have died, that a mishap might have occurred, that the risk was unnecessary, that I felt once again the fear that my child could die, – this is terrible.

I am glad that David is not living in the shadow of fear. I am grateful for his zest and passion for life; glad, for his sake, that he had this experience. For my own sake, I wish that he would never take such a risk again.

We found out about his skydiving after the fact, and he apologized in case it had caused me grief. I told him, My fear is not your responsibility. But I tell you, it is sometimes hard to bear. I have a case of  the “after-nerves,” though I still can’t seem to stop looking at the photographs.

With the beauties of the Christmas-Hannukah-New Year season upon us, I feel the energy behind the preparations. I read the Advent scriptures, and I try to muster some anticipation. But I am falling back this year, back into 2006, when we were living in Ronald McDonald House with a very sick, frail and miserable Katie.

I can feel the fear, the anxiety, the discomfort, the homesickness, the longing for our family traditions. I remember making decorations for our room: a wreath and two artificial trees for the children. I remember the kindness of the carolers who arrived to sing for us, the cookies and cider, the Christmas-night feast laid out by generous volunteers, who could have been at home with their own families, but chose instead to share in our “not-at-home” Christmas festivities.

There are parallels which can be drawn between that time in our lives, and the journey of Mary and Joseph to the little stable behind the inn where Jesus was born. We were lovingly provided for: lodging, food, medical care, kindness, friendship, prayer. I could make a beautiful story out of these elements, drawing out the parallels, and perhaps, someday, I will.

Today, however, I am missing my daughter, wishing that she were here to share in decorating our home, baking cookies, wrapping gifts, dressing up, hosting and guesting with us. Today, I feel the emotions of longing, homesickness, grief for what was and will never be again.

I tell myself, Do not ruin the holiday with sadness. Do not waste it with ingratitude. Do not dwell on what you do not – and cannot – have. Think of others, less fortunate than you. Do something for them.  But the pain in the pit of my stomach, the sense of being ill at ease, remains.

It has been six years since we spent Christmas at Ronald McDonald House, yet my emotions are as raw and painful as if it was last year.

Christmas 2006 RMDcH4

Advent may be just what I need…if I will only open to it, rather than clinging to my sadness. “Be not afraid,” he said…and he said it often.

Heavenly Father, help me to open my broken, traumatised heart to Your love, to Your son’s coming again. Come, Lord Jesus.

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Pomona College Magazine

Last summer, I had the privilege of being interviewed by Sally James (a Seattle writer) for the alumni magazine of Pomona College.  I spent my freshman and sophomore years as a Sagehen, and there are days when I seriously regret transferring to another college. When we took David to Pomona for a visit, I looked at it from a completely different perspective – and wished I had stayed on to major in English or journalism.

After “Because of Katie” was published, I contacted the magazine’s editor, Mark Kendall, to let him know that I had written a book. The magazine has a page devoted to alumni publications, and I hoped my book would be included there. Mark went beyond that, to ask me not only about the book, but also about our journey with Katie, and what I have been doing since that time. He kindly decided to tell the story in an article in the alumni section, rather than in a paragraph on the “book*marks” page.  The result arrived in my mailbox yesterday. You can read it here:

http://magazine.pomona.edu/2012/fall/sewing-comfort/

(Photo by Larry Steagall/Kitsap Sun)

I’m deeply grateful to Pomona College Magazine and Sally James for telling the story of Katie’s Comforters Guild with kindness, sensitivity and respect. I hope that it will be a blessing to my fellow alumni.

Thank You for Listening Generously

“When you listen generously to people they can hear the truth in themselves, often for the first time.” – Rachel Naomi Remen

I rarely write postings for all of my blogs at the same time, but today, I am doing just that. If you visit any of my blogs (www.karengberger.blogspot.com , www.katiescomfortersguild.blogspot.com , www.katiegerstenbergerendowment.blogspot.com  and www.abundantlivingaftercatastrophe.wordpress.com ) this is what you will find.

It’s been a deeply moving season here. The end of summer brings with it memories of Katie’s passing (August 16th), my parents’ anniversary (this year they marked 60 years of marriage on August 17th), the start of the school year (David is a junior in college, studying in Italy for a semester; Katie should be a senior in high school, looking at college choices and enjoying her last year at home with friends – but she is not). It also marks the anniversary of the start of her illness, her diagnosis, and the 10 months which were a kind of living hell, leading to her passing. The 10th of October, the day we entered the hospital “for tests” and didn’t come out for months; October 13th, the day we found out that it was cancer (though not what type) and Katie’s first round of chemotherapy began.

Gregg let me know during this time that he is not comfortable hearing the news, in detail, of all of my involvement in the world of cancer. He can take only so much of it. My work does not give him solace the way it does me; it simply reminds him of what took our daughter away. When I asked him if the advances in research, cures and awareness make him feel better, he replied, “No.” None of it will bring Katie back, so it’s not a comfort to him. Even though it comforts me, I need to filter some of what I ask him to participate in. Fair enough.

Shortly after my book reading event at Eagle Harbor Books in September, Gregg and I attended the Ben Towne Foundation’s annual BENefit. We were “table captains,” which really means that we gathered interested family and friends and all sat together for dinner. The Foundation makes it so easy to “host” a table that I wouldn’t feel right calling it “hosting.” That was the second cancer-related event in a month’s time, but Gregg loves the Townes and wants to support the Foundation.

At the BENefit, Dr. Michael Jensen announced that his work on relapsed leukemia has been given approval by the FDA to move into clinical trials. That means that children here in Seattle who have no other hope than a miracle have a chance at that miracle; they can enter a clinical trial using their own re-engineered T-cells to fight their own cancer. It will begin sometime in the next few weeks.

This announcement brought our table to tears. We were sitting with my parents, brother and sister-in-law, as well as with two other couples who are friends – both of whom have watched their own daughters die from brain cancer. Three sets of bereaved parents heard the news together. It was a dramatic moment, and one that has truly changed my life.

I finally feel relief.

I feel relief, for the first time since Katie died.

Since Katie died, I have felt like the parent of a murdered child. I have felt that the murderer is “at large,” and beyond the capacity of “law-enforcement” to catch. It hurts. I feel it’s my duty as her mother to catch her killer and bring him to justice. I didn’t realize that so much of my work and energy has been directed to catching this killer – but it has.

After the BENefit, several family members and friends joined me for a tour of the Ben Towne Center for Childhood Cancer Research. At the end of the tour, I took Dr. Jensen aside and thanked him. I told him that for the first time since Katie’s passing, I feel as if I can relax. I know that the killer is now identified. We may not have him on death row yet, but his whereabouts are known, and he is in the crosshairs of the law. They are going to catch him, and stop him from killing other children (and adults). This is Dr. Jensen’s mission, and it is now beginning to be available to patients (not just lab mice).

On the tour, my dad asked Dr. Jensen two important questions (and I think I heard the answers correctly):

1)   How much does it cost annually to do what you are doing?

Answer: $1.5 million

2)   How much do you need annually to be able to conduct experiments on the cancers you want to cure next?

Answer: $15 million.

Friends, what is being spent on the next election makes this sum look positively PALTRY. This research has the potential to cure children AND adults. If you know anyone who can contribute to it, please invite them to contact me or the Ben Towne Center. I will be happy to effect an introduction.

What I want most to share with you is the fact that I feel a new freedom now. The baton is in Dr. Jensen’s hands (and those of his colleagues, some of whom were part of Katie’s care team). I will continue to do my best to raise awareness and financial support, but I can finally let go of this part of my work, because it is being done by the professionals. And some of the thanks for that goes to Carin and Jeff Towne, and the memory of their precious son, Ben.

I wasn’t aware that I was holding my breath for this to happen, but I have been…and I can rest now. Thank God that prayers are being answered! The timing was not sufficient to save Katie’s life, but I believe that the cure will be part of her legacy.

Thank you for reading my blogs, for commenting, for supporting our family through this time. Though we will never be “over it,” your listening, caring and praying has been part of our healing process. That process continues – and finding a cure for cancer is surely a part of it.

Abundance, Not Perfection

The past week has been filled with joy, good news and answered prayer.

That’s a reason to stop and give thanks – to just STOP, right there, and give thanks to Love for these blessings.

My book reading at Eagle Harbor Book Company resulted in raised awareness and support for childhood cancer research. I have specific, personal evidence of that, and it is a rich blessing to me to know that the message which I feel called to share is being heard.

And – HEY! I must say – they sold out of “Because of Katie,” and had to order more. It out-sold J.K. Rowling’s new book – can I hear a “woot-woot!” just for that fact?

Karen and Dr. Michael Jensen discussing childhood cancer research at Eagle Harbor Book Co. (photo credit: http://www.eagleharborbooks.com)

After that, I spent days writing and working on other projects. On Friday, it was time for the third annual Ben Towne Foundation BENefit. Gregg and I have been fortunate to have attended this event every year, and to have seen this dream grow BIG. We love Carin, Jeff and Ryan Towne, and wish we had known Ben. We met the Townes because Ben was treated in the same place by the same staff who treated Katie, at Seattle Children’s Hospital. Fortunately, one of those people thought we should meet – and we did. The resulting friendship is indeed a gift from our children.

Gregg dislikes re-entering the world of pediatric cancer, and this is the only benefit which I can persuade him to attend nowadays. He goes gladly because he wholeheartedly supports what the Ben Towne Center for Childhood Cancer Research is doing, as well as the family and the Foundation that brought that center into being. I can’t think of ANYone who could persuade Gregg to be in a video other than the Townes.

benefit 2011 Feature Video from ben towne foundation on Vimeo.

It would be difficult to describe the relief – the weeping, grateful relief – which I felt on Friday evening when I heard  Dr. Jensen announce from the stage that the U.S. Food & Drug Administration has just approved clinical trials for the new T-cell therapy he has designed. That application, submitted by the Ben Towne Center for Childhood Cancer Research, is what I have been dreaming of for at least five years: therapy which does no harm, only good – and rapidly. Therapy which can help adults, as well as children. Therapy which can be applied to a variety of different cancers, without causing secondary cancer. It is therapy that I wish had been available in time to save my own daughter’s life, and the lives of our friends’ children.

In the midst of these blessings is the knowledge that none of it changes the outcome for us…Katie is dead, as is Ben, Hannah, Jenny, Henry, Jessica and Hayden, and so many others…they are not with their parents, where we feel they belong. They should be here, growing up, being loved and nurtured by their families. But they are not. They are somewhere else. In my belief, they are in the next phase of life, going forward, yet awaiting our arrival and reunion. I believe we will see one another again. I believe that Katie’s life work is large, full, and that she did it with beauty, dignity, courage and completeness, as far as her part goes. I only wish it had been a longer life, without the suffering brought on by cancer.

I will never feel that it was worth what has happened since – no matter how much good, no matter the progress and the lives yet to be saved – I will never feel that my daughter’s life should have ended at 12 and a half years. That will never, ever be “okay” with me. If someone wants to tell me that God had a plan and that Katie’s death was part of it, so that I would become more faithful, less selfish, an advocate for cancer research, or do any number of “good works,” I will want to punch that person on the nose. Period. So please, do not try to tell me that it was a “good” thing that this happened. It wasn’t, and it never will be.

Having written that, it is fascinating that in the class I’m taking right now – RIGHT NOW – the focus is on prayers that are not answered the way we wish they were. The lesson I’m studying (Beth Moore’s “Believing God”) is dealing with specific prayers for healing that are answered with recovery, and those that are answered without it – even prayers that are followed by death, rather than healing. I’m so glad that someone is willing to face the facts and discuss them! The worst thing is to brush off questions which don’t presently have answers. Wrestle if you wish, but do not deny or ignore!

Life can be filled with goodness, yet still be imperfect, and that is what my life is like. I have to work continually to accept what has been denied, and to embrace, with love and gratitude, what has been given.

A cure for cancer is closer – hope is rising – progress is in the works. My daughter, who should be applying to colleges this fall, does not live here on earth with her family; I can’t see her until I die. These are facts of my life. It is a life is filled with abundant blessings – and it contains horrific wounds. It is not perfect – it is human. And it is a gift.

Creativity

One way of living abundantly is expressing your creativity.

When I was in college, I majored in Fine Art. They didn’t offer commercial art as a field of study, which is too bad, because I think I might have actually been able to make a living that way – either in the graphic arts or interior design – but that was considered a “less than” field of study. It was art for art’s sake, or not at all. I chose art for art’s own sake, but I ended up working in finance, because I needed to earn a living. A good example of where snobbery leads – to a dead-end, artistically!

After I retired from the business world to be a full-time, stay-at-home wife, mother and community volunteer, I reveled in the opportunity to do crafts with my children and teach them to make things. We made candles in seashells, made soap, painted, drew pictures, used stamps, crayons, markers, pencils…the list goes on and on.

I began teaching Katie to sew. She and I made a pair of adorable, red flannel pajama bottoms from “Blondie” cartoon fabric for her; she ran out of interest before we made the top. I dreamed of sewing with her, maybe even getting proficient enough to make a prom dress with her (or for her). I never got that good at sewing.

This is the only photo I have of the pajamas that we sewed: Katie is holding our new kitten, Latte.

Before Katie got sick, I had a rich creative life, expressed mostly through making crafts. I used to knit, make beaded jewelry, make cards, take photographs, scrapbook, and very occasionally, paint. Painting was the hardest thing for me to do, as my expectations were the highest due to my education, and I got very tense about it. I wanted to paint, but I didn’t like the outcome, and the process was not relaxing or joyous.

After Katie died, I started to write my way through my grief. Writing helped to keep me from feeling stuck, frozen or suffocated by my powerful emotions, and has turned out to be the most natural form of creative expression for me. And something interesting has happened: after writing for nearly five years, I have started to want to make art and crafts again.

I helped at Camp Goodtimes West in the Arts and Crafts department this summer, and things have started to percolate creatively, since then. When working with quilts or gathering fabric for Katie’s Comforters Guild, I have started to get that creative urge to work with color and forms again.

For my parents’ 60th wedding anniversary party in August, I made the table centerpieces.

The creative process was therapeutic and FUN. It got me back into my seaglass and shell collection, using the hot glue gun, working intuitively with my hands.

Since then, I’ve finished a thrift-store table which has been sitting in the garage for a few years. It was an old, dark (mahogany?) coffee table that I envisioned as a beach glass-topped accent piece. I started by spray-painting it. I had never used spray paint before; it was fun!

Then I glued the beach glass to the top.

After that, I worked the grout into it, cleaned the excess off and sealed it. Finished product:

Close-up detail:

I am thrilled. The cheerful, bright colors of the table and the glass which I found on beach walks make me happy. It is going to be useful, as well!

Each step of the process felt good, especially since I didn’t push myself to do too much at one time. This kind of project has to be allowed to dry in between steps, and it is beneficial to take a break and review it in between stages.

It is wonderful to feel creativity blooming, and healthy to give expression to that urge, whether through art, crafts, music, drama, photography, dance, writing – whatever is your favorite medium.

What is your latest creative passion?

What if you aren’t feeling creative inspiration? Well, there are several ways to look at that situation. Here are two examples:

1) Feel nothing, but practice anyway. To put that in writing terms, Sit down with pen and paper (or at the computer) and write whatever comes – even if it’s “I don’t feel like writing,” “Blahblahblah,” “My cat is driving me crazy,”  etc. WHATEVER comes, put it down.

2) “To everything there is a season, and a time for every matter or purpose under heaven.”
Ecclesiastes 3:1 So maybe today is not your day to do art. You can clean the shower, work in the garden, write a letter, volunteer, do the grocery shopping – and you can still bring your artistic eye to the most ordinary activities, if you wish. How are the items displayed in the store? Are the leaves on the trees changing color? Can you use a different colored pen to write that letter?

Or not. You might give yourself permission to be dormant, if that’s where you are. There are four seasons, after all, and one of them is winter…when things are very much alive, but a great deal of the creative activity is out of sight.

What Would You Tell Yourself, Back Then?

My talented friend Elizabeth Aquino, author of the blog “A Moon, Worn as if it Had Been a Shell”,  invited her readers to take part in a video that she was making.

Elizabeth is the mother of Sophie, Henry and Oliver, the wife of Michael, and an elegant writer, an activist and pastry chef. Feeling intimidated yet? But there is no need – she is also one of the warmest, most supportive, empathetic, sharing and inclusive persons I’ve met in the blogisphere. Having a full life of her own, Elizabeth still takes the time and makes regular efforts to care – and participate in meaningful ways – in the lives of others. Hence her membership in the Hopeful Parents community, and her making of the video.

Hopeful Parents was founded by the mother of a son with special needs as an online community providing “grassroots support for parents of kids with special needs.” I was invited to become a regular columnist there after Katie passed away.

At first, I wondered if I should do it; my daughter had already died, and I wondered what I would have to contribute to this community of parents who were navigating the medical, emotional and social world with their children living with disability. Yet Christina, the founder, felt there was value in speaking to the issues of parenting a grieving sibling, as well as the difficulties surrounding pediatric cancer treatment and life after the death of a child.

I never thought of Katie as disabled. I expected her to regain her strength and to get her life back after she recovered from cancer. Yet Katie was disabled by her cancer treatment; she was weakened physically, needed to use a wheelchair, had a nasogastric tube and an IV line for many months, and was in severe emotional distress, at times. She never regained her appetite, had an enormous abdominal scar, had had major organs removed, and was on an oral chemotherapy follow-up protocol until shortly before her death.

Bearing all of that in mind, I trusted that I would find something to write about that would be of benefit to the community, and I was blessed by writing regularly (& reading) there.

Many parents of children with disabilities are practicing living abundantly, though their lives have taken a turn they didn’t anticipate through their children’s needs. Their lives are not easy, but their lives are rich, as you will be able to see from their words in the video.

The question Elizabeth asked is,  

What would you tell yourself, if you could go back to the day of your child’s diagnosis?
I invite you to watch, and leave a comment about it  for Elizabeth, or leave one on her blog (or mine). Here is the link: Elizabeth’s VIDEO .

Thank you, Elizabeth, for asking such a good (and deep) question, for listening to the responses, and for sharing them with the world.