I’ve been working on a Powerpoint presentation during the past two weeks, and in preparing it, I went through every single photograph that we have of our time in the hospital with Katie, from her diagnosis through her chemotherapy treatments, surgery, recovery, discharge, and then (what we thought was) her remission and hospice care. It was a task from which I had to take breaks, as the photographs bring back memories of very difficult times, and strong emotions arose with those memories.
One example of the complexities of my feelings is that, while I am grateful that Katie is no longer suffering from the cancer or from its treatment, I miss her terribly and wish she was still here with us – so the photos of us together, even though the circumstances are horrible, make me nostalgic.
One thing I’m deeply thankful for is the willingness of family and close friends to be truly present to us when we were in the hospital and Ronald McDonald House. The simple act of showing up, to sit and chat, bringing a delicious take-out dinner, spending the evening with our children, watching a movie or bringing a treat for the kids, taking David skiing or out to dinner on his own…all of these simple acts were the greatest of luxuries when we were away from home, and our normal life. The fact that once a week, Gregg and I could have a meal out in a restaurant (and a glass of wine, which is forbidden in the hospital and in Ronald McDonald House – for good reason), spend some time as a couple in private conversation, away from the sights and smells of health care, helped us to survive the stress of 10 months of cancer and hospice.
I know why a lot of couples don’t stay together when a child is seriously ill or passes away. We were only in the health-care environment for 10 months before Katie died, and it was incredibly stressful; some of you have been in this arena for years. The worry and pain are so great that it is very easy to understand how a marriage can crack under the pressure. Each person I’ve met processes (and grieves) differently. There are times when I feel very much alone, even in my close and loving marriage. Fatigue, fear, trauma, sleep-deprivation, hospital food, lack of exercise, separation from our familiar routine, not knowing what to expect, not having a clear diagnosis or treatment plan, not knowing when you can go home, or how to care for your child’s (or their sibling’s) physical and emotional needs presents enormous challenges in a marriage. I must say, these are things that didn’t really cross my mind when I took the vow, “In sickness and in health, for better or for worse…”
So when my sister, brother, parents, in-laws, nieces, nephews and friends showed up to be present with us, they were lifelines. They gave the children a break from the hospital routine; they gave us relief, they brought comfort and a reminder that we were NOT cut off, not forgotten - and they brought a little bit of the luxury of respite. A conversation, a massage, a lunch away from the hospital, a gift certificate to a restaurant or bookstore, a soft blanket, a prayer quilt, magazines…any and all of these things were, to me, reminders of a larger Love in which “we live and move and have our being.” It was comfort, in a very uncomfortable time. I wonder if there is a polite way to communicate the difference that this kind of help makes to us when people say, "Let me know if you need anything." Anything? So many simple things - any one of them would help!
Hospice was another example of this Love in action. Into the unthinkable experience of being told that “Your daughter is going to die, but we don’t know when,” walked a gentle, peaceful, kind, competent, faithful presence – our child’s hospice nurse. Though Katie was naturally angry at the fact that hospice meant she was going to die, and referred to Amy as “the quack” (from watching British television and movies), she did accept Amy’s presence and help. Amy understood Katie and her personality, and loved her – even thought it was funny when, after Amy examined her and left the room, Katie would ask,” Is the quack still here?” In fact, in her beautiful book, The Lamaze of Dying, Amy included Katie in her dedication. That kind of understanding, accepting, skilled and tender presence was part of what helped me to survive Katie’s passing. I didn’t even know what hospice really meant before we needed it, but I do now, and am a huge believer in its value.
It is hard to find words adequate to the complex emotions involved in surviving a child’s passing. I wrote on a fellow grieving mom’s blog posting, regarding the anniversary of her daughter’s passing: “I think I understand…because I go through these changes, too. It’s okay, it’s not okay; it’s bearable, it’s unbearable; we are building a life around the hole she left, I am falling into the hole where she was. I miss her; I have to let her go. It is a crazy reality; am I going crazy to be living with it? No, I am doing what thousands have done before me. I am honoring her memory, and weaving it into my life, day by day, as beautifully and gracefully as I am able. And I think you are doing this, too. She will always be the one, the only, A. – and we will remember her with you.”
It is a wonder, to be able look back at a terrible time in our lives and see the kindness, generosity and support we received. I am thankful for every single gift of kindness, time and presence. I pray that this kind of support is given to all who need it. It is one of the reasons we created Katie's Comforters Guild - to bring comfort into the hospital experience of every child who is admitted.
Karen Gerstenberger is the president of Katie's Comforters Guild at Seattle Children's Hospital, and she writes her blog at www.karengberger.blogspot.com