Friday, October 7, 2011


The past two weeks have been a whirlwind of activity, veering back and forth between fast and slow, and packed with significance. It is still hard to believe some days that this is my life.

Two Mondays ago, Paul and I went to Seattle Children's Hospital to interview two staff members: Karen, a chaplain, and Dr. Cohen, the heart surgeon, both of whom were very important in Katie's cancer journey.

Karen Taliesin is a gifted minister, open to all kinds of spirituality, who brings love and peace into the room when she enters. She was a lifeline to me in the hospital - a representative of God's loving, courageous, humorous presence in the midst of the craziness that is pediatric cancer. She was one of the few people whose presence was acceptable to Katie, and who brought peace. Those 10 months would have been much darker without Karen. She consented to be interviewed on camera, and it was a pleasure to be with her again and hear what she has to say.

Dr. Gordon Cohen is a brilliant pediatric heart surgeon. He removed the part of the tumor which was in Katie's heart. Discovering that her entire inferior vena cava was full of tumor and had to be removed, he re-fashioned a connection for her blood to flow using her own tissue. He repairs the hearts of the tiniest infants, too, and he does it very well indeed.

Dr. Cohen agreed to speak with us on camera, but instead of beginning our session at 10:00 A.M., he was called into surgery, and was delayed until 2:00 P.M. There are not a lot of people in the world who can do what he does, so when he is called, he goes to help. And we were glad to wait for him; we feel strongly that videotape is not as important as pediatric heart surgery!

Dr. Cohen spoke to us candidly for 45 minutes on camera, and for some time afterward, off-camera. He took me right back to Katie's surgery, and it was painful, but for the purposes of our video, it was vitally important. The same feelings arose when listening to Dr. Waldhausen - I was back with Katie, and her life was in grave danger - but she was still alive, with hope for recovery. It is hard to re-visit those memories.

Yesterday, Paul and I interviewed our last subject: Amy, Katie's wonderful hospice nurse. Amy brought peace and comfort into our lives when all hope for recovery had receded, replaced by prayers for mercy, love and an easy death. Our prayers were answered, with God's (and Amy's) help.

As I sat with Amy, her words took me right back to the days of Katie's dying - the four weeks of uncertainty, and the painful steps involved in accepting that we had to let Katie go as easily as we could. Reading and signing the "Do Not Resuscitate" form. Learning about medications we hoped we would never have to use. Facing each day with the purpose to be and provide whatever Katie needed, no matter what happened.

At one point, I thought I was going to be sick. It came over me suddenly, a wave of deep nausea, and I had to pray to get through it without vomiting, as the cameras were rolling and Amy was speaking. It passed, but the feeling shocked me. After four years, the power of those events is buried in my psyche and my body on a deep level. I do not re-visit Katie's dying process in detail in my mind. Going through it once was horrific, yet sacred; remembering it in detail yesterday was just plain horrific...but it is worth it, to do this work.

We are thankful to each interviewee for his/her time, dedication and generosity of spirit in remembering these events and sharing his/her thoughts and feelings about it, more than four years later. Now, we move on to the editing of all of these pieces.

Through the process of listening to others, I have been gifted with many deep truths and passionate feelings in their words. This work raises many questions in me, and it stirs a desire to ask more questions and listen more deeply to those who accompany us in our darkest moments. They possess a wealth of knowledge and experience that cannot be duplicated, and it deserves to be preserved and heard. Who knows where the path leads next? I can only leave that up to God and take the step that is right in front of me now.


KBL 2 ORD 2 SAN 2 LUV said...

It is weird to think that someone else other than you, Gregg, David, and the kitties were also invested in Katie in the same manner. I know that sounds strange to read, but I mean that I sometimes don't realize how many people were feeling that same feeling in their gut, whether it was when they were trying to save her, or when it was time to assist in her passing. I'm very interested to read/know what their thoughts were during their blessed work.

ChiTown Girl said...

Your strength never ceases to amaze me. I'm amazed at your ability to relive those darkest moments, and you do it with such grace. I'm so happy you have Gregg, David and your faith to help you along this journey.

Elizabeth said...

I really don't know what to say here other than you write so simply and clearly of the impossible. I trust you and trust that what you are doing is the right and true thing, the thing of grace.

Busy~Bee Suz said...

I can only imagine how cathartic and painful it is to walk those same steps again Karen.
I am thankful for all the wonderful people who were there to care for Katie; and your family too.
Your hard work will be so helpful to others in the future.

Jim said...

Your strength,purpose and vulnerability in this vital undertaking is as important for others (us) to witness and share as is the professionals' input. Both are so important in this process of grieving and 'giving back'. My goodness, I am humbled by what you have undertaken for your daughter Katie.