Wednesday, July 18, 2012

Sharing Excerpts

My book, UNCOMMON beauty – Crisis Parenting From Day One, is going to the printer this week! To celebrate this final stage of the project, I am sharing some excerpts from the book in this blog entry. 
My book contains nearly 100 short essays about surviving the first few years as a parent of a medically fragile child.  The topics range widely, as seen by two very different essays below. I write about the ideas that helped our family make it through the early days of our experience. My hope is to inspire and help other families who find themselves adrift in a situation they never expected.

To learn more about my book, visit:

First, an explanation of why I felt compelled to write this book. 
Excerpt taken from the Introduction:

“In the first weeks and months I longed for a guidebook. Something to hold that offered ideas and positive thoughts. I went to a bookstore for my first outing away from the hospital. I looked for answers to the challenges that I was facing. I found happy books about bringing baby home, setting up routines, creating the perfect growing and learning environment. I found sad books with long painful stories about when something went wrong. I found technical books that dealt with specific conditions different from ours. The book that I was looking for would have practical ideas about how to manage our new life, facts about working with doctors and hospitals, tips that only seasoned caregivers knew, revelations that would validate my emotions and reactions, affirmations of hope, and answers to the mysteries of caring for our child. This book would be easy to read with short essays that could be quickly taken in with the few spare moments I might have during a busy day. I couldn’t find my guidebook; it didn’t exist. I left empty handed and discouraged.”

Excerpt from Chapter One:
 “Wires and Tubes
There are few things as sobering as seeing your child covered with wires and tubes. He looks so delicate, so vulnerable. The wires, tubes, tapes, and incubators are an intimidating weave of artificial umbilical cords—more science fiction than reality—creating barriers that separate us from our baby. Every strand has a function; understanding this brings peace.

One day old, afternoon
It is my shift now. Randy has left to try to get some sleep and he will spend time with Jonathan, our two-year-old son, who is at home protected from all of this.
I sit next to Evan, scared to even stroke his cheek for fear that I might disrupt something. I relax into a daze, waiting. An alarm goes off, jolting me into a panic. A nurse comes in and adjusts this or that and resets the machines. She leaves. I stay and return to a daze. The cycle of waiting, falling into a daze, jolting awake, resetting of machines continues.
Some of my uneasiness dies away as I realize that all the tapes and bandages are not actually covering wounds or treating any injury. They are just holding the wires and tubes in place. And the wires aren’t actually going into Evan’s body. The wires are just resting on his skin to monitor his heart rate, breathing, oxygen saturation levels. For the most part they have been delivering good news.
I become comfortable with the IV. This is just a needle connected to a tube delivering fluids and medicines. That’s good—he needs that.
I can accept the NG tube [nasogastric feeding tube] in his nose, too. He is getting food and that is all that matters.
The intubation tube, the big wide tube going into his mouth is the hardest to accept. It looks so invasive—so bulky—life support at its most basic. Moving air in and out of his lungs because he can’t breathe on his own.
I take a big breath, reach in and touch his cheek. My baby is alive.
One week after he is born, the intubation tube comes out. All of the remaining tubes and wires are gathered into a big awkward bundle, he is lifted gingerly out of the incubator and first into my lap and then into Randy’s. Finally, parents and baby united. Our eyes connect and we begin to bond.

Eventually, as the days go by, we will become mostly immune to the wires and tubes, although they still taunt us with their life-sustaining power. We can nimbly gather the bundle in our hands, carefully avoiding pulling anything out of its place—or worse, stepping on anything—and scoop Evan into our arms ourselves. No alarms go off. We are a team, Evan fighting, parents cheering him on all the way.”

Excerpt from Chapter 2:
 “Designate a Care Coordinator
Consider designating one person to coordinate offers to help. There may be someone in your life who would be happy to offer this kind of help. When you are in a crisis, coordinating and utilizing offers to help can feel like more work than it’s worth. Don’t let this prevent you from accepting help that might be available.

Twelve days old
Libby, a friend from our church, meets with us. She has offered to coordinate meals and volunteers who want to help us. She has made several months’ worth of calendars. We talk about what our needs are and make a list of things we could use help with. Anyone who calls or emails offering to help is directed to Libby. She keeps the calendars filled. We are relieved and grateful.
Through this scheduling we are able to spend close to three months caring for Evan in the hospital and still have our two-year-old son’s needs met. Libby arranges volunteers to babysit Jonathan during the day so that we can continue working and staying with Evan in the hospital. We are provided with meals, laundry help, yard work help, and gift cards. All this generosity saves us. It helps bridge the gaps that this unexpected crisis has created—financially, logistically, and spiritually.

Think about someone close to you that would be good at organizing help for you. If you are uncomfortable asking someone to do this for you, present the idea as something you read about in a book that sounds like it would be really helpful to you in your situation. Ask if that person could be your coordinator, or if he or she would be willing to find someone to take on this role. If you belong to a church, ask if there are any groups within the church or individuals who could help you in this way.”

I hope you enjoyed this short sample from 
UNCOMMON beauty - Crisis Parenting From Day One.  

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