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.
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:
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:
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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