The Importance of Telling the NICU Story

One of the most valuable things
we can do to heal one another
—is listen to each other's stories.

Rebecca Falls

When faced with a major life changing event, such as the hospitalization of a child in the NICU, parents are often stunned by the news and left trying to make sense. Their initial dreams of a normal birth with a healthy child have been changed. In it's place is the reality of a NICU hospitalization.

Survivors of traumatic loss, such as NICU Parents, may benefit from telling the story. For those who have experienced a major loss it is critical that the loss become real.

Grieving parents should be encouraged to tell their NICU story as often as needed as part of the healing and recovery process.

Each time the story is repeated, the reality of the NICU hospitalization becomes more undeniable and more real.

Many of the Benefits found in Telling the Story also apply to NICU Parents telling the story of their NICU Experience:

1. Stories help us explain the world, making sense of the insensible.
2. Storytelling is considered one of the oldest healing arts; it has been used for centuries as a beneficial way for grieving people to cope with loss.
3. Stories provide a way in which physicians and patients communicate, look for the meaning of their illness, and discover ways of coping with it.
4. For many patients telling their story is what helps them to cope with or heal from their disease.
5. Dealing with loss involves creating a private personal story and then telling the story to others to assimilate the loss.
6. Telling (or writing) the story about one’s life experiences has been shown to have beneficial effects on illness symptoms and is associated with improved physical and mental health.
7. Life stories are rewritten to make sense of, find meaning in the loss and reassemble shattered lives.
8. Losses and significant life changes become incorporated into a person’s new life story as the loss is assimilated.
9. Grieving parents should be encouraged to tell their story of grief as often as needed so the reality of the loss becomes real.
10. Listening to a person’s story of loss or illness is central to grief support; it can be beneficial for a grieving person in integrating, healing and recovering from the loss.

Thus, having a good friend or a partner that will be there with you and allow you to tell the NICU story again and again if needed is how many NICU parents come to terms with their new reality.

Telling the NICU Story may help in the parents in finding meaning and incorporate this major challenge into their new life story and become empowered NICU parents.

Source:
Dyer K. 2001. The Importance of Telling (and Listening To) the Story. Journey of Hearts.

Image: Mikas Vitkauskas. Chill in the Evening. Royalty Free Use.

10/22 - Comforting Moment: Just Smile

Charlie Chaplin came up with a simple strategy for how to survive those most difficult of days...just smile. This is a good song to listen to on those days when everything seems to be filled with sadness as a way of believing that things will get better.

Josh Groban is one of my favorite singers. I have been fortunate to see him three times in concert, the last time with my daughters, young Josh Groban fans at ages 7 and 5.

Josh Groban's rendition of the classic song "Smile" will remind you to keep smiling. I would have had this available for me to listen to on an iPod, during our NICU days, if iPods existed then.



Smile Song Lyrics

Lyrics by John Turner and Geoffrey Parsons.
Music written by Charlie Chaplin, 1936.

Smile though your heart is aching;
Smile even though it's breaking.
When there are clouds in the sky, you'll get by.
If you smile through your fear and sorrow,
Smile and maybe tomorrow,
You'll see the sun come shining through for you.

Light up your face with gladness,
Hide every trace of sadness.
Although a tear may be ever so near,
That's the time you must keep on trying,
Smile, what's the use of crying?
You'll find that life is still worthwhile,
If you just smile.

That's the time you must keep on trying,
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile.

Even if you are feeling a bit blue, you may find yourself starting to ask yourself:

...what's the use of crying?
You'll find that life is still worthwhile
If you just smile.

More:
Dyer KA. Smile Thought Your Heart is Aching. Squidoo.com

Image Source: Michael Bretherton. Sand Stuff. Royalty Free Use.

10/8 - Comforting Moment - We Never Lose the People We Love

Facing the loss of a baby is one of the most difficult challenges that NICU Parents can face. I have found with the many years of working in the grief, loss and bereavement field, that often times hearing or reading words of wisdom from someone else can help to console during a time of great loss.

One of my favorite quotes to help put a death in perspective comes from Dr. Leo Buscaglia:

I know for certain that we never lose the people we love, even to death. They continue to participate in every act, thought and decision we make.

Their love leaves an indelible imprint in our memories. We find comfort in knowing that our lives have been enriched by having shared their love.

Leo Buscaglia

While words cannot take away the intense pain and sorrow you are feeling, these words that others have found to be helpful during their times of loss may help to ease the pain, by helping you "find comfort in knowing that your lives have been enriched" and that you have been forever imprinted by knowing your baby.

Photo Source: Sanja Gjenero. Heart in Sand. Royalty Free Use.

Creatively Coping: Write a Prayer Poem

While I was in medical school, residency and clinical practice I wrote and used poetry to help friends, family, patients and colleagues deal with the pain from losses and aid in their grieving.

Poetry Therapy aided my own healing. I then shared my poems with others to help with theirs.

Poetry was an integral part of the healing portion of the Journey of Hearts website established to help anyone grieving a loss. Over the years my healing poems have been used as part of funeral, memorial and remembrance services, published as memorials in newspapers and yearbooks and sent as e-mail condolences.

I was fortunate enough 10 years ago to take a course with Poetry Therapist, John Fox on "Forming Community and Revealing Uniqueness Through Poem-Making" as a course from the National Foundation of Integrative Medicine.

John has gone on to become a leader in the movement of poetry therapy as an expressive art and in particular, the use of poetry in medicine. When I read this exercise on using Prayer Poems, I knew it could be a useful exercise to help NICU Parents cope with the NICU experience.

Write a Prayer Poem
John starts with a definition of prayer and writes that:

Prayer is a way to communicate with the Divine. Prayer [also] is a way to love the spirit of whatever is dear to you. Prayer is a way to let your heart cry out. Prayer is a way to come exactly as you are to the Unknown, the mystery of it all. Bring to your prayer what is raw, what is sublime.

Prayer is a way to welcome a wider vision of life for you.

He then goes on to pose a series of questions, starting with a poetic line, "Prayer is words strung like beads on the thread of your silence."

• Are you aware of the silence that your prayer words join with?
  
• What fertile silence do you long to enter?
  
• How does this kind of silence effect your world?
• How does divine guidance respond to your plea for help?
  
• Who reaches your heart in those times when no one else can?
  

Finally John encourages people to write a prayer of your own.

This exercise of writing a Prayer Poem could be useful ones for NICU Parents struggling with issues of faith and they try to understand the reasons behind why their newborn is in the Intensive Care Unit.

A Special Healing Blessing
Even though John and I were not in touch at the time of my daughter's NICU adventures, I am sure that his exercise of Prayer Poems would have been a helpful way for me to creatively coping during our time in the NICU.

On my own I did created our own version of a Prayer Poem by writing a Healing Blessing. This Special Healing Blessing was placed over our daughters isolette until she was discharged. Copies were gifted to the NICU on her discharge.

Source:
Fox. J. Poetic Medicine Bag: Exercise 3: Prayer Poems. The Institute for Poetic Medicine.

Images: Elena Buetler. Writing. Royalty Free Use.
Kirsti A. Dyer MD, MS. NICU Blessing. Some Rights Reserved.

Comforting Moment: Savoring a Cup of Tea

We've already looked at the fact that Coffee helps in any Crisis. Let's take a look at the comforting impact of a different variant of coffee, a latte or even tea.

This Comforting Moment is another one by Liz Elayne discovered on her Seek Gratitude Blog. This really resonated with me, since one of my favorite teas to drink is a Chai Tea.

taking a break
to breathe in
the scents of
a spiced chai latte…

to breathe,
to breathe,
to breathe.

Source
Liz Elayne Lamoreaux. Day 30. Seek Gratitude Blog.

Image: Nicolas Véron. Cup of Coffee. Royalty Free Use.

CarePages - Connect, Share, Care

NICU Parent Support has paired up with CarePages to give our viewers their own place online to create a page to connect, share and care during challenging times. Visit the custom NICU Parent Support CarePages to get started.

What is a CarePage?
A CarePage is a personal, private web page that can be used by family and friends to stay connected and enhance communication when a loved one is facing a long-term illness or at the end of life.

Using a Care Page
Creating a CarePage can be a way of generating support, providing information and updates easily. I think the greatest benefit may be that of holding the loved one in everyone's thoughts so they can do better and get healthy, or feel the love and support of family at the end of life.

You can use our custom NICU Parent Support CarePages to keep family connected when a loved one is facing a challenging illness, or at the end of life.

For More Information

• NICU Parent Support CarePages
  
• Squidoo Lens on CarePages

9/10 - Encouraging & Comforting Message: Free Hugs Campaign

Today is Free Hugs Day. If you don't know about the inspirational Video that has become a YouTube Phenemonon take a look at the lens that I created on Squidoo.

In the the Spirit of the Free Hugs Campaign, I am passing along the information to you with a quote and a virtual hug to hopefully brighten up your day.

Millions and millions of years
would still not give me
half enough time
to describe
that tiny instant of all eternity
when you put
your arms around me
and I put my arms around you.

Jacques Prevert

Free Hug Day - September 10, 2007
The Free Hugs Campaign began as one person's attempt to make a difference and reach out to others to brighten their lives.

The Free Hug Campaign is a random act of kindness, a selfless act performed by a person for the sole reason of making others feel better.

For More information on Free Hug Day, see the Free Hug Campaign on Squidoo.

Enjoy a Virtual Hug
Here's Your Online Hug:

((( Hug )))

Now go and pass it on to someone else.

Shifting to a Weekly Posting Schedule for the Fall
My apologies for the length between posts. The semester has started for my girls and myself, which has lead to some increased time demands.

I will be shifting to a schedule posting at least one blog entry each week along with updates about the NICU Parent Expo.

Photo Source: Peter Rol. Fenne Lien. Royalty Free Use.

8/26 - Encouraging Message - Believe and Follow Your Aspirations

This message of encouragement comes from Lousia May Alcott, author of "Little Women" a reminder to believe in our highest aspirations.

Far away there in the sunshine
are my highest aspirations.
I may not reach them
but I can look up
and see their beauty,
believe in them,
and try to follow them.

Louisa May Alcott

As a parent, we hold the highest aspirations for our child(ren) and dream of their beautiful future. This message of encouragement is a helpful one to remember and to hang on to during the times when it may be difficult to believe.

Keep looking up, keep believing and keep following those dreams.

Photo Source: Manoel Silva. Clouds. Royalty Free Use.