Encouraging Message: Standing at Times of Challenge

In honor of Dr. Martin Luther King Jr. Birthday and the upcoming National Day of Service, today's inspiring quote comes from one of his inspiring sermons.

These words of Dr. Martin Luther King Jr. can serve as an encouraging message for NICU Parents:

The ultimate measure of
a man (or woman)
is not where
he (or she) stands
in moments of comfort,
but where
he (or she) stands
at times
of challenge and controversy.

Dr. Martin Luther King, Jr.

NICU Parents find themselves facing times of challenge, a true test of their measure. Many of us discover internal strengths that they many never have even known they possessed.

It is this new-found strength that sustains us through the NICU challenge and allows us to hang on, when things seem impossible.

Image: Vivek Chugu. Attached 2. Royalty Free Use.

Creating a Circle of Healing and Support

I have long held the belief, both personally and professionally, that there is a healing power in holding a person in one's thoughts whether you are saying prayers or giving blessings or lighting candles. This belief in holding a person in your thoughts are the same beliefs echoed by Dr. Jim Reeves, the urologist who treated Cancer Survivor, Lance Armstrong.

There is an ancient Chinese belief
that when a person is held
in the hearts and minds and souls
of so many other people,
they can do better.

One of the greatest difficulties for me as a NICU parent, who was also used to being a physician, was the overwhelming feeling that there wasn't anything I could do for my daughter. I had to step back and turn over all of the care to those who understood the NICU technology and could help her medically to heal.

I decided to change my feeling of helplessness by taking a more active role in her care. We created a Circle of Healing to have friends and family hold her 'in their hearts and minds and souls...so she could do better.'

Our Circle of Healing for My Youngest Daughter
Within days after the birth of my youngest daughter and her unexpected NICU admission, thanks to the connection power of the Internet, we were able to quickly contact friends and family to notify them of what had happened.

On Easter morning, our newborn daughter was included on several prayer lists and prayer circles, only two days after her birth. Via phone calls and e-mail messages we tapped into the healing powers to create a circle of positive thoughts and energies from friends and family around the United States and around the world. We asked everyone to hold our daughter in their thoughts, to keep positive thoughts and prayers to mentally aid in her healing process and strengthen the Circle of Healing around her.

I truly believe that having so many people hold our daughter in their hearts, minds and souls, mentally aided in her healing process. We were blessed with the outcome. The Circle of Healing we created for her helped keep her safe and protected until she was strong enough to be discharged from the hospital.

Continuing the Circle of Healing
Rev. Schwing (see prior post) was the start of the Circle of Healing that we created starting on Easter Sunday Morning for my youngest daughter Kristiina while she was in the NICU.

Writing this article, I wondered who would be there if our baby had a health crisis? I don’t know. I trust that the Circle of Healing would be there. Sometimes we are on the giving end, sometimes on the receiving end. That’s what keeps the circle going.

The nurses at UCSF continued Kristiina's Circle of Healing by hanging a blessing that we wrote for her above her isolette. You can read a copy of the blessing that we wrote for her posted on the Journey of Hearts Website as A Healing Blessing. Part of the blessing is included below.

Ironically, Rev. Schwing would experience being a NICU parent several years later with the birth of his second child. The Circle of Healing was there during his challenging time in the NICU.

My Wish for Current NICU Parents
For this Easter season, as I am reminded of our own NICU experiences, I would like to extend the following wish for NICU and ICN parents who currently have their newborns in the hospital.

May you continue to heal

moment by moment
hour by hour
day by day
knowing that so many love you
and wait to welcome you.

May you feel loved.
May you be safe.
May you be protected.
May you be strong.
May you be healed.

May you find healing, in whatever form that healing might take.

Our Easter Gift
This Special Healing Blessing comes as a bonus when you download the Free NICU eBook, For Those Who Hold the Littlest Hands.

More Resources:
Dyer KA. An Easter Healing Blessing in the Intensive Care Nursery NICU Parent Support Blog.
Dyer KA. Circle of Healing - Cloisonné Lapel Pin. The Violet Heart Collection on Squidoo.
Dyer KA. 2002. A Healing Blessing. Journey of Hearts.

8/15 - Encouraging Message - Learning from Challenges

I have always grown
from my problems and challenges.
From the things that don't work out,
that's when I've really learned.

Carol Burnett

Comedians often turn to comedy as a way of coping with their life challenges and hardships. Carol Burnett has faced many hardships and losses in her life, including the death of both a husband and a daughter.

I think as NICU Parents and as parents in general, we often wish that there weren't as many problems and challenges to learn from.

Many of us discover a strong internal sense of strength, for some a light, that helps to guide us through the difficult times.

Resources for Managing Your NICU Challenge:

• How Will I Survive the NICU? The Squidoo lens developed for helping NICU parents once the initial shock period is over.
• What does my baby's diagnosis mean? Several helpful articles on the most common problems faced by NICU babies. Some articles have additional links for even more information.
• How do I talk to the doctors and nurses? Several useful articles to help in talking to the doctors and nurses as well as figuring out what questions may be useful to ask.

Photo Source: Stefanie L. Breakthrough. Royalty Free Use.

8/5 - Encouraging Message - The True Rewards of Saving NICU Babies

Today's message of encouragement quote comes from NICU Nurse, Marcia Kilpatrick.

There is no black and white
here in the intensive care nursery.

Go ahead
and spit out your dismal statistics,
but the real truth
is in the toothless smile of the baby
anyone else would have given up on.

It is highly likely if my youngest daughter had been born even 10 years earlier than she was, or born in a more rural setting that she would not be with us here today. The survival statistics for her condition (PPHN) at that time were much worse.

I am grateful for the care that the NICU staff provided my daughter. I am thankful that we lived near a Level 3 Neonatal Intensive Care Unit so she got the treatment and the advance level of care that she needed to support her heart and lungs (cardio-respiratory system) during the first few critical hours of life.

The True Rewards
This quote was a good reminder for me as a healthcare provider and as a parent. Sometimes the greatest rewards for what we do in healthcare and what we do as parents, comes from the most unlikely places. In the case of healthcare, the rewards come from our patients, in the case of being a parent--from our children.

About the Quote
This quote was one that I saved from a blog posting from June. Unfortunately, Marcia has since decided to take down her Ants Go Marching Blog. She is still blogging for the Columbus Parent. You can read her blog entries under Ants Marching.

Source:
Kilpatrick, M. What I Do. Ants Marching Blog. June 2006. Previously Available at Marcia Kilpatrick Blogspot.

Photo Source:
Denz Zani. Baby Face. Royalty Free Use.

7/29 - Encouraging Message - NICU Parents and Families are True Heros

...a hero is an ordinary individual
who finds the strength
to persevere and endure
in spite of overwhelming obstacles.

They are the real heroes,
and so are the families and friends
who have stood by them.

Christopher Reeve
1952 - 2004

NICU Parents are the Real Heroes
I think anyone who has lived through a NICU experience would agree that NICU Parents and their families are the real heroes. These are ordinary people who have been challenged with an extraordinary event (the sudden NICU hospitalization of a newborn) and yet despite this obstacle, somehow find the courage, the strength and the will to persevere despite the challenge.

Christopher Reeve - Superman, Super Human Being
Anyone who was around in 1978 remembers Christopher Reeve as Superman and the Super Hero.

At least for me, the image of Christopher Reeve as Superman is one that has been etched for me...particularly in light of the tragic riding accident in 1995 that left this talented actor and "Man of Steel" a ventilator-dependent quadriplegic for the last decade of his life.

Christopher Reeve's accident has always been a reminder to me that how life can change in just a flash of a moment, a blink of an eye. Everything is normal one moment and very different the next.

The Full Quote
Here is the text of the full quote and how his definition of hero change with time and with circumstances:

When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequent question was: What is a hero? My answer was that a hero is someone who commits a courageous action without considering the consequences.

Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. They are the real heroes, and so are the families and friends who have stood by them.

Rising above Tragedy to Focus on Living
I remember being so amazed at how Christopher and Dana Reeve were both able to quickly rise above their family tragedy and focus on the positive. Their grace and great courage in the face of adversity has always been a source of inspiration for me.

The Christopher and Dana Reeve Foundation is an example of one of the many organizations that has formed as a result of a tragic event and gone on to do so much to help so many.

I think another one of his quotes summarizes how he was able to keep on living despite experiencing such a life changing event:

There will be ups and there will be downs,
there will be times when things make sense,
there will be times when they won't,
but you'll always be on an adventure of meaning
if you live for self, family, and others.

These words of wisdom also apply to anyone facing a challenge. I hope that NICU Parents and families will find them to be as inspirational in facing challenging times and I do.

Other Related Blog Posts:
Dyer KA. Comforting Message - Struggling for Your Dreams. July 23, 2007.
Source:
Christopher and Dana Reeve. About Us. Christopher and Dana Reeve Foundation.

Photo Source: Erica Johnson. Superman Pillow. Royalty Free Use.

Teaching Students to Write Stories out of NICU Experiences and Devastation

I have always been a believer in learning from the losses and the challenges that one faces in life and then using those experiences to help others facing similar crises, but are earlier in the process.

Kate Hopper has taken her own experiences as a NICU parent to a new level. She used her own NICU story of a preterm birth due to preeclampsia and the stories of other NICU parents and loss.

I was very impressed with her blog entry on heartbreak and hoping that I read this week. She shares her lesson plans to include two stories of heartbreak with her students in her "Mother Words" course at the Loft Literary Center in Minneapolis.

Her selections for the week included Susan Ito’s "Samuel" and Suzanne Kamata's "You’re So Lucky." Kate writes that she "chose these pieces to spark discussion about point of view, emotional distance, and writing about heartbreak." Her goal in sharing the stories was to teach her students how to write "heartbreak without sentimentality, craft stories out of devastation."

Learning from NICU Experiences
In the graduate course that I taught last Spring on Grieving Family Systems, I had my graduate students read the formal research papers that I had written on Identifying, Understanding and Working with Grieving Parents in the NICU to give them the perspective of grief in the NICU parents. One of my students was a former NICU nurse, who found the information invaluable.

The older I get, the more that I believe we are given these experiences to learn from and then to turn around and teach others from our losses. Perhaps this is one of the better ways of making meaning from the loss.

Sources:
Hopper K. Heartbreak and Hoping. Mother Words: Mother's Who Write Blog. July 25, 2007.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network. May/June 2005; 24: 35-46.



Photo Source: Nadya Smolskaya Paper Work. Permission to Use.

7/23 - Comforting Message - Struggling for Your Dreams

But there is suffering in life, and there are defeats.

No one can avoid them.

But it's better to lose some of the battles in the struggles for your dreams,

Than to be defeated without ever knowing what you're fighting for.

Paulo Coelho

NICU Struggles
I think if you would talk to most NICU Parents many would use the words "struggle," "battle," and "challenge" to describe their time in the Neonatal Intensive Care Unit.

I know what I was battling for shortly after my daughter arrived in the NICU. I was fighting to keep my daughter strong enough, in whatever ways I could imagine, and struggling to have her stay on this side and not cross over (not to die).

Dreaming New Dreams
NICU parents have to quickly adjust to the fact that their dream of taking home a healthy happy newborn shortly after delivery is not going to happen.

MOD Family Support Specialist, Melissa offers these words of wisdom:

This was not what you were expecting.
You had dreams of this precious child being born and going home. Storybook fantasies of being a mom...filled your dreams at night.
This is the way you believed things would be...
Not spending your baby's first days in an intensive care unit.

Sometimes we have to sit back and accept that we are working towards a new normal. Our normal.

Melissa
Share Your Story

Sometimes we have to step back, let go of the old dreams and begin dreaming new ones.

The dreams of NICU Parents are often postponed and changed. Dreams of going home with a precious baby...change to ones of having a healthy, happy, peaceful baby at home...at some point.

Source:
Melissa. Baby in the NICU. Share Your Story. May 2, 2007.

Photo Source: Dick Herrmann. Sleeping Baby. Use with Permission. www.lakepeople.de

The Distress of the NICU Parent - Each Person Only Knows His or Her Own Pain

There is an expression about not judging a person unless you have walked a mile in his or her shoes. I think this is much the same when trying to understand the grief and pain felt by a NICU parent when trying to make the best decisions for their NICU baby.

Today, Anesthsioboist "T" shares her views on the Limits of Viability in her blog.

I wish people wouldn't pass judgment on parents who ask for everything possible to be done to save their children.

I wish people wouldn't pass judgment on parents who ask that their children be left in peace if resuscitation appears futile.

"T" reflects on a one of her very difficult experiences as a medical student and a more postive experience as an Intern and Mother with her own daughter. She cautions that the first story may elicit a strong reaction from some. (I would caution parents before reading the first part that "T's" reflections are more geared for professionals, who must deal daily with difficult life and death situations.)

NICU Parents experience a wide range of distresses. Many want absolutely everything done to save their child. Others are able to help their child let their child go if care appears to be futile. It may be difficult for people to understand either of these points of views.

After reading T's post, a quote from Paulo Coelho comes to mind:

We can never judge the lives of others, because each person knows only their own pain and renunciation.

It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.

Paulo Coelho

Other Ethical Sources:
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm
Dyer KA. NICU from the Nurse's Perspective.
http://nicuparentsupport.blogspot.com/2007/07/nicu-from-nurses-perspective-when.html

Sources:
T. The Limits of Viability. July 17, 2007.
http://anesthesioboist.blogspot.com/2007/07/limits-of-viability.html