Tuesday, July 21, 2009

Brighter in the mornings

It's great to sleep! Providing physical, emotional, medical and logistical support for a loved one, especially a child, with a terminal illness is indescribable. You feel their pain, yours and overwhelming helplessness. A good night's sleep, when we can squeeze one in, gives us the energy to at least open mail or return phone calls. Some days we are sitting here and the lights go out because we just forgot to pay the bills. For me being a 'Type A' senior manager for large financial firms, raising our kids, and otherwise knowing that whatever I focus on will be a success, having no power to change this and letting go of everything else has been a valuable life lesson. We only think the laundry needs to get done, or the earth will stop spinning if those phone calls are not returned. Our values and focus in life will never be the same, as caregivers and fighters can understand.

I've been a practicing Zen Buddhist for about 15 years now and I would recommend readings in this aera to anyone suffering with too many questions and not enough answers. Not trying to convert, and that's the beauty of Zen! It provides a foundation in meditation, and a structure for seeking understanding, which brings a peaceful quiet to the questions that have no answers. Buddhism is not a religion but a philosophy, or a way of living that connects us to being human, and to ourselves. Not in a good way or bad way, just opens the channels that are there. A good reading list can be found at: http://www.zenguide.com/zenmedia/zen_buddhism_recommended_readings.cfm. If you get the chance, you'll find most readings to be light and written with a great sense of humor. You can get as much or as little from them, but most often you will find just what you need in that moment.

We are trying to play catch up with our lives outside of the hospital this morning while waiting to hear from Amiee's Onc. She had a rough night. The IV line in her arm fell out and her veins are like stone because of the years of chemo and radiation. Sometimes it takes days to find a good vein that will hold up. She has a port but the IV is for her pain drip, which is now in her hand and causing her more discomfort. We'll be there with her in an hour. Being away from her is so, so hard!

Things are really looking up with Amiee's Place. We have a great group of volunteers working with us. One group coming together in South Florida and a partner group in Northern California, where we lived for some time. This has been such a tremendous gift! We hope to involve many volunteers in the 18 - 28 year old range, because we belive they will understand and be moved by our mission. The foundation is focused on organizing a Benefit Concert in Coral Springs, Florida to support the formal launch of our foundation. So far it's coming along nicely! We expect to have local talent, vendors, a raffle and food sales. It should be an exciting, fun, and hopefully profitable event. We have are also talking with the Surfriders Foundation South Florida and hope to partner with them on future fundraising efforts. Check them out at http://www.surfrider.org/southflorida/.

Only time will tell what lies ahead for Amiee. While we wait, we are loving her and making sure she has the little things she needs each day to feel connected and to hold on to hope. Reaching out to others and being able to give back to the caregivers and members who are fighting the daily battles is what gives us the strength to get up and fight another day. Our lives have been changed forever, and changed for the better. The compassion to end suffering for all beings is a fundamental principle of Zen and how fortunate are we that life has allowed us the opportunity to not only 'practice' Buddhism and compassion, but to actually 'live' it.

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