This is the third time I’ve written for Hopeful Parents in the month of Katie’s birthday. This year, instead of focusing on her absence, I had planned to tell you about some wonderful things* that are happening because of her life. Really, I had planned this – and I will do it shortly. But I find that I first need to say a few things about her birthday – such as the fact that her birthday - and the day of her death - are the two hardest days of the year, for me.
We spent Katie’s birthday (March 8th) on vacation in California this year, because David was on spring break from college; we went to visit my parents. On that day, the guys played golf, while my mother and I had a spa day. This is a special treat, and we wished that Katie could have been with us – she loved pampering, massage and such things. I selected polish in a color that Katie liked – my toes now remind me of the one professional pedicure she had, for her 11th birthday. Later in the day, Gregg and I took a walk together. We made dinner for the family. I bought pretty butterfly balloons to release, and we took photos of them floating swiftly into the golden-blue sky at dusk. It sounds like a lovely day, doesn’t it? But she wasn’t with us…nor was she taking her driver’s license test, or having a “Sweet 16” party. Though I try to live in gratitude for what we DO have left, the day still held pain.
Katie’s birth day is a beautiful memory – I love remembering everything that I can about the day she was born, and about her, and I love to talk about her – but it seems I am alone in this. The 8th of March – and the memories - seem to make everyone else in my family sad, so I must choose between going through these memories alone, or hurting those I love. Even the outpouring of love and kindness that we received from family and friends (notes, phone calls, text messages, photographs and videos - it was overwhelmingly generous, and I appreciate every single thing), I cannot freely share with my husband; he doesn’t want to read all of the kind comments or discuss memories with me on this day. He is still in a place where talking about Katie makes him miss her more – it hurts him. Will he always feel this way? Only time will tell; we are Hopeful Parents here, and I have hope, but for now, his inability to talk about her is hurtful to me. It is not directed at me, nor is it about me, but it hurts, because he is the one person who knew her from the very beginning, who went through it all with me.
I fear that, if we don’t talk about her, we will allow her memory to fade – not that we will ever forget her (an absurd concept), but that we may forget some of the stories, the happy times, her quirks and the specific things that only we know about her. This fear causes stress. I don’t want to take my own comfort at the expense of my beloved. Yet I don’t want to lose one more thing about her, and losing memories, and the ability to speak freely of her, feels like another kind of death.
The death of a child can bring with it the death of many things: hopes, dreams, assumptions, traditions, family celebrations, established family dynamics, and easy communication are some examples that come to mind. Some of these things can be re-formed and re-shaped; some cannot. I believe we have done a pretty good job, all things considered, of working intentionally to keep our family centered and strong in love. But it is painfully difficult, at times, and sometimes communication just breaks down. It has broken down every year on Katie’s birthday, since she died. We understand each other’s feelings, but we are simply not “in sync” on this. I hope this will not always be the case, and I hope that my truthfulness about it will help some other family in our situation to feel less alone.
*The good news: this month, I started filming a video on family-centered care. My friend (since the 8th grade), photographer Paul Dudley of Paul Dudley Photography is helping me to record, edit and shape this project which is very dear to my heart. We are making it for our hospital’s residency training program. I have been writing, gathering photographs and drawing deeply from my memory-bank about everything that happened to us in Katie’s cancer journey, from just before her diagnosis, through hospice and beyond. I want to share the good, the difficult and the sacred, in order to help doctors and other staff to understand what this is like for patients and family members. I hope to enlighten them, and to give them the chance to experience caring deeply for a patient who then receives a terminal diagnosis and dies, before it actually happens to them in real time. It’s my heartfelt hope that this will help medical staff to take the best possible care of their patients, patients’ families, and of themselves, when they encounter this situation on the job. I would not be doing any of this if Katie had not lived – and died.
…more good news: March 15th is the day when our local representatives with CureSearch leave for Washington, D.C., to ask lawmakers for more funding for pediatric cancer research. They are taking Katie’s story with them to help illustrate the seriousness of the need for funding, and to increase awareness and understanding.
…and even more good news: On March 19th, our local Children’s Hospital Thrift Store (which supports the hospital) is going to unveil a portrait of Katie and another precious girl, my friend Reba’s daughter, Hannah Hunt, on their “Wall of Courage.” I’ve been asked to say a few words about the hospital and what they do. There will be an article in the local paper about Katie’s Comforters Guild that will coincide with this event, written by a friend, Erin, (who has a regular column). Awareness will be raised by this article’s insight and compassionate focus. I’m thankful to Erin for her generosity, her skill in writing and her intuitive understanding.
Karen Gerstenberger is the president of Katie’s Comforters Guild at Seattle Children’s Hospital. She writes her blog, Gberger, and does her best to raise awareness and funding for pediatric cancer research.