"See I Am Doing a New Thing," continued...

You can read all of the postings about my life-changing week at Rancho La Puerta  

here, here, here , here and here.

"See, I Am Doing a New Thing" - Part One

 “…See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” - Isaiah 43:19 NIV

I just returned from a trip - a journey is a more accurate description – to Rancho La Puerta in Tecate, Mexico. It was a life-enhancing week of reflection, new activities, delicious organic food in healthy portions, gentle self-care, fellowship and learning. 

Read along if you want to hear what it’s like to step outside of your regular lifestyle, off of the merry-go-round, unplug from “the grid,” and do everything with an open mind and heart in a warm, welcoming atmosphere.

Before I embarked on this adventure – a couple of months ago – I was talking to Katie in my mind one night, before I went to sleep. I told her that I was doing the best that I can with what I have - doing my best to honor her life. I heard her reply as clearly as if she was in the room with me: “That’s great Mom, but what about your life? The rest of your life doesn’t have to be all about my life.”

Whoa. That stopped me in my tracks, and I’ve been pondering it ever since.

What could be next for me, if it isn’t about Katie? I reflected. I was me before she got sick, before her passing – even before she arrived in our lives. I was me before David’s arrival, before my marriage to Gregg. What about me – what is my own life about, now?

This trip came at the perfect time to open to that question. 

I have wanted to take a spa retreat (and a spiritual retreat) since our children were small. My mom and I have spent a day here and there at a spa, and have been away on church retreats, but we’ve never taken one like this. It seemed self-indulgent - something that other people did, but not me. I wanted to do it, but never would have treated myself to it. My mom’s generosity – and her need for a break, after a difficult summer – made it possible.

As the date of departure approached, I wondered how to open my heart to prepare for the experience. The words that dropped into my mind were: “See, I am doing a new thing…” I didn’t recall where in the Bible that phrase originated, but I knew that it was God speaking. That phrase became my mantra as I prepared, mentally and physically, for the trip. I resolved to look for Him everywhere, to intentionally allow God to do a “new thing” - whatever that meant - with me.

Gregg and I flew to Palm Springs and drove to my parents' condo. He and my dad had a week of activities planned; Mom and I got up early the next day and set out for San Diego. Five highways and 2 ½ hours later, I dropped off the rental car and we were met at the airport by the welcoming staff of the ranch. They took our bags, gave us each a bottle of water and a little bag of homemade granola, and invited us to board their van. 

After another couple of hours on the road (and a border crossing), we arrived at the gates of the ranch. We were each greeted with a fresh cup of lemonade and a cool towel as we disembarked the van. 

Following the porter who took our bags, my first sensation was of the delicious scent of herbs. The largest rosemary bushes I had ever seen, abloom with purple flowers, as well as laurel, lavender, sage and thyme, wafted their fragrance in the warm air, enlivening our senses with nature’s aromatherapy. As we followed the young man along the path to our casita, enjoying the perfume in the air, I began to see that this was going to be a trip greater than anything I had imagined.

Inspired by Love and Service

"The beauty and charm of selfless love and service should not die away from the face of the earth. The world should know that a life of dedication is possible, that a life inspired by love and service to humanity is possible." - Sri Amritanandamayi Devi

 

This love and service are perfectly expressed in nursing care, whether it is a family member caring for a child who is sick with a virus, or a professional nurse with advanced training, serving in an intensive care unit. One of the most tender aspects of this love and service to humanity is seen in hospice nurses. 

I am privileged to know a hospice nurse who was trained in the ICU, and moved outward from there to care for people with life-limiting illness - those who choose to forego extraordinary means of prolonging their lives, preferring to focus on quality of life over quantity.

When we were faced with Katie's diagnosis of relapsed adrenocortical carcinoma (and with it, "terminal" cancer), Seattle Children's Hospital offered to call hospice and request care for Katie in our home. We accepted, in shock and gratitude. Amy came over a few days later with the hospice social worker, Dee; they explained everything and answered our questions.

 

In many parts of the country, hospice is not available for children. One of the reasons for this is the fact that - even among hospice professionals, where death is viewed as a natural part of life - the death of a child is a very hard thing to witness and accept. Fortunately for us, Amy knew that "The LORD cares deeply when his loved ones die" (Psalm 116: 15), and she came alongside to teach and help us, providing skilled hands to deliver that sacred care.

Over the next weeks, Katie's condition grew more life-limiting as the disease advanced in its unique and terrible way. During that time, Amy was always just a phone call - and a few minutes' drive - from us, all day and night, every day. She consulted by telephone, made home visits, provided comfort care and listened, in the most compassionate, understanding and devoted way. Katie was not happy to be in hospice care, and adopted what we call a "spicy" attitude to Amy (calling her "the quack" when she was out of earshot), but Amy understood this and loved her. 

 

We will be forever grateful to Amy for her support in some of the most tender and sacred moments of our daughter's life and death.

 

Amy writes a beautiful blog, and has just published an article in the American Journal of Nursing which I highly recommend; it can be found HERE. For more insight on this subject, check out this article in The Week magazine (an excerpt from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. ©2013 by Katherine Anne Butler).

 

When one you love is sick or dying - whether you are a family member, friend or professional caregiver - your gifts of love and selfless service are essential. Your presence can bring peace and comfort - even if no cure is possible - and in so doing, you act as the very hands of the Holy One (Matt. 25: 36-40). It is a sacred vocation.

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.