September (GOLD) News

One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

When One Door Closes

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." - Helen Keller

Light, Peace, Presence

 

"Enveloped in Your Light, may I be a beacon to those in search of Light. 

Sheltered in Your Peace, may I offer shelter to those in need of peace. 

Embraced by Your Presence, so may I be present to others." - Rabbi Rami Shapiro

Inspiration from Christopher Reeve & Katie

I have been thinking about the actor Christopher Reeve lately. I've read a few of his/his wife's books. He wasn't my favorite actor, but I really grew to admire him after his injury. He never gave up hope, and his efforts to make progress, to stay as fit as possible and try to walk again. He went through many stages of grief after the accident. I recall something he said, to the effect that he had a choice of what his attitude to his situation would be. That he knew that if he became a "depressed hulk in a wheelchair" it would make things much worse for his family and for himself. I have been thinking about this in light of the fact that in this part of the world, we live with the illusion that we can control much more than we actually can. We are faced with so many choices every day, even as small as which type of peanut butter to buy (creamy or crunchy? Natural or with additives? Large or small?). This variety of choices tends to wear me out. However, I like to think that I have the ability and the privilege to choose...

But here is a catch: this habit of choice tends to lead to the belief that we have a right to choose. Sometimes we have; sometimes the right is only to decide how we will face something that we didn't choose. Christopher Reeve did not choose to become paralyzed at the height of his mental and physical fitness, in the prime of his life; he was able to choose how he faced it. Katie did not choose to become ill and die; I did not choose to have my daughter taken out of my life. The fact of the matter is that we were not given the power to make things work out the way we wanted them to; we tried as hard as we could to save Katie's life, but she died anyway. We must accept that. Katie faced her illness with humor, a bit of anger, a bit of fear, a lot of courage and strength, and the tools she had at hand. She faced her death the same way. Now, I get to decide how I will face my life without her presence.

Some days, I want to fight, like a mother bear whose cub has been threatened and taken. I want to fight against accepting that I did not get to decide how this turned out; I accepted everything short of this result. I adjusted to all of the hardships that were thrown at us, but I would not allow defeat into my mind; I held onto hope. Now, I just want to say, "Show me who did this, and I will shred him, tear him apart, limb from limb, and annihilate him." Of course, there is no one to blame except the disease itself. When I am in fight mode, I feel cut off from comfort. It seems that the most comfort comes when I can humbly sit with God and say, "I need Your help. Please help me today." But some days, even though I know it does no good, I still feel like fighting. This does not seem to lead to healing.

I want to choose to live with this with grace and good humor, and to see God make something, create something, out of it. I have hope for what His/Her creativity can do. I do not believe that anything can compensate me for this loss. Nothing can fill a Katie-shaped hole except Katie. But if I try to put my energy toward acceptance with love, with gentleness, perhaps it will be better for me and those around me. I believe that Christopher Reeve accomplished more, and inspired more people, after his injury than in all of his able-bodied accomplishments. Perhaps I can learn to live with my brokenness in a meaningful and loving way, too; I pray that I can.

My doctor recently asked me how I was coping, and if Katie had given me any instructions before she passed away. I thought for a minute, and told her that we had discussed Dana Reeve's passing last year, and that I told Katie that I thought she died of a broken heart after her husband, Chris, passed; I believed that she missed him so much that she became ill. At that time, Katie told me, "Mom, if I die, don't do that." The doctor said, in effect, "I guess you have no choice," indicating that Katie had given me my "marching orders." I haven't felt like giving up, but it was a reminder of Katie's clear sense of direction & her spirit.

The ovens have been fixed and the microwave was replaced. We are still awaiting parts for the dryer. I have heard from more than one person that after someone passes, things break down (thanks for sharing this, Meril and Karen T.). Our house is only 7 and a half years old; maybe it just feels the way I do: a bit broken. We need to be willing to do alot of things in a different way, in order to live with the brokenness.