Boston Children’s Hospital article in Children’s Today:

Thirty Years Later-Happy Anniversary

by Dr. Roxanne Daleo

“Hi, Dr. Roxanne?” the voice on the phone said. “This is Chris…Christine Berl.”

“Chris!” I exclaimed. I flashed back to the first time I met her. It had been many
years, yet I could see her vividly in my mind; a sweet, fragile girl clinging to hope by
a thread.

“Can you believe it?” she asked. “This year will be my 30th anniversary since my
bone marrow transplant!”

Christine was just 13 years old when she came to Boston Children’s Hospital, where I
worked as a Child Life Specialist. She knew she faced a serious challenge with
months – maybe years – of recovery.

If Christine survived, she’d be a medical miracle. My job was to help her deal with
the pain, the stress and the emotional roller coaster she was about to ride.

Those were tough months, but Christine had a strong will and love of life, she had an
unshakable confidence in her doctor. Plus the loving support of her family who held the same belief that she held for herself.

And here we were, 30 years later. I was on the phone with the miracle I’d prayed for. Christine shared with me some of the thoughts her 13-year-old self couldn’t.

First of all, after I was diagnosed with Aplastic Anemia and given 3 to 6 months to live, I immediately told myself, “I cannot die.” I never saw myself dying. I always believed I would survive.

Then, when Roxanne – light, laughter, paint, joy and roses – came into my life, I was given an enormous gift of being taught how to visualize and breathe as a way to deal with the pain. I also needed a way to cope with being confined to the tiny room, while dealing with all the other difficulties associated with undergoing the bone-marrow transplant.

Christine illustrates our potential within to awaken our inner energies. With mind/body strategies (self-regulation, meditation and guided imagery, etc.) we can access our inner self- our greatest source of healing.

I met Christine in 1982, when I was assigned to her as Child Life Specialist. I was still a doctoral student back then and research assistant to mind/body medicine pioneer Dr. Joan Borysenko. My mentors were noted Harvard cardiologist, Herbert Benson, MD, author of The Relaxation Response, and Dr. Jon Kabat-Zinn, founder of the UMass Mindfulness-Based Pain Reduction Program. I was implementing the techniques and groundbreaking research in psychoneuroimmunology which had direct relevance to the treatment and outcomes of the children in my care.

Opening children’s minds to the power within them became my guiding principle. Using the art of meditation under Dr. Benson’s guidance, I realized how important imagination is in relaxation therapy. He was using the language of imagination for adults and I adapted his principles to the language of imagination for children.

Psychoneuroimmunology explores the effect of emotions, thoughts, mental images and beliefs on immune function- to either inhibit or promote healing.
The research showed that we reach a powerful “choice point” in the midst of a medical crisis. It’s not so much about the disease itself, as about our response to it. As we spoke on the phone, she shared the image that she clung to all those years ago.

I am healthy – I look like myself again but even better – I have all my hair, I am happy and laughing. I am at the ocean, walking on a beautiful, white-sand beach. Then I see myself swimming in warm water. I swim underwater for a long time, but don’t run out of breath. After a while, when I am ready, I come up to the surface of the water and breathe in the salt air and peacefully look up at the sun and think, “Thank you, God, for saving my life, and letting me swim and be in the sun again.” My healthy new body feels light and relaxed as I glide through the water.

I had no idea, until now, 30 years later, how much I used this image to help me cope. I thought about it all the time. It was the one thing that brought me comfort in the midst of all the physical suffering.

Christine’s experience shows how our thoughts affect our emotions and our health. This approach was unusual then. But current practices in behavioral medicine take into account our beliefs for the prevention and treatment of disease.

Albert Schwitzer, MD taught his medical students: “There is a doctor inside each patient, they come to us not knowing this truth, we are at our best when we give the doctor within a chance to go to work.”

Deep healing is a conscious activity. Video gaming and distraction tactics for children do not effect the healing process in the manner of skills in conscious relaxation such as guided imagery. These life skills are necessary to access the inner most self-our greatest source of healing.

No one in the medical world expected Chris to live more than a few months. But she went on to finish high school, attend college and earn a teaching certificate and – perhaps most remarkable of all – to give birth to three beautiful children. Her success is a testament to the dedication of her doctor and the Boston Children’s Hospital staff, and to the power she accessed within her own beautiful self.

Managing Stress and Grief
in Children
by Dr. Roxanne Daleo

Managing stress and grief as a result of crisis, such as the one at the SANDY HOOK
ELEMENTARY SCHOOL is a challenge, even for the most experienced,
trained professionals. Here are some suggestions on how to begin and what you can
do if your child has been affected and is asking questions.

Under normal circumstances, talking to your child about death can be a heart-
opening experience for both of you; rather than something to avoid. Everyday you
have an opportunity to bring your childʼs attention to the cycles of life all around us.
From the tiniest insect, to a plant, or a fish; everything has a life cycle. Some are very
short cycles; other creatures like birds are longer. Animals and humans, usually even
longer. Everything is born, lives and then dies.

The natural world is a place to start to develop your childʼs understanding of death in the
context of life cycles.(See the book LifeTimes: The beautiful way to explain death to
children by Bryan Mellonie and Robert Ingpen), Bantam Books, 1983.) to help yourself
begin the conversation with your child in a calm and centered way.
Under unusual or tragic circumstances, we have to go deeper to meet our childʼs
needs and our own. And to be able to answer their questions, correct misconceptions,
ease worries and fears.

When a childʼs life cycle is cut short, we look beyond the physical, to the spiritual, to our
faith, to whatever we believe is sacred and Divine for ways to explain the inexplicable.
What happens after we die is a matter of your faith and your belief system.
For those of us who are confronted with our own uncertainties, referring to world
cultures may provide a way to come to grips with our own fears; learning from others
what they do may provide comforting answers for you and your child. In many places,
death is an integral part of life. Grandparents live in the same house and even die at
home surrounded by loved ones where family members can mourn together and
support one another. Infants and babies sometimes die and although it is out of order of
nature, there is ritual to honor the little life in itʼs entirety. Grief is the opportunity to come
together in praise of the individual who died.

Things For You To Consider

When upset feelings happen, many of us are more likely to not want to talk about them.
But pushing our feelings away is not the best for our child. Even if they donʼt say
anything to us, our children are observant and they will “feel” our feelings, “read” our
facial expressions and body language. In short, by not fully expressing ourselves, we
teach our children to not express themselves in healthy ways. This can cause more
worry for your child rather than protecting them from hurt and emotional pain.
Be mindful of the age of your child. See Guidelines for Childrenʼs Conception of
Death Age and Stage of Understanding:

STAGE 1: Preschool to 5 years old

Death is not permanent and non-reversible; children understand death as
separation; more like a different kind of life. (ex. “How will she get around in heaven
without her wheelchair?”)

STAGE 2: Ages 5 – 9 years old

Death is understood as permanent; itʼs inevitability has not been realized.
Children can “elude death by escaping the clutches of death” (“I can run and hide so he
wonʼt get me!”) Children may think of death as a movie or story character, such as a
Halloween ghost, skeleton, grim reaper or shadow. In the case of a real dangerous
person, such as the shooting at Sandy Hook Elementary School (ex. “Will another bad
guy come after me?”)

STAGE 3: Ages 9-10 years old

Death is final and inevitable. Youngsters may have a pre- occupation with the
fear of bodily harm. Images of violence more prevalent and accessible from media and
movies.

Be mindful of the level of experience with death.

If your child was directly involved with the Sandy Hook traumatic event, that experience
is powerful, present, charged with emotions and pervades you and your childʼs
everyday life now. Whereas, explaining a distant event from news reports is best done
by answering only those questions your child asks with empathy and caring and at their
level of cognitive development. (See Guidelines for Childrenʼs Conception of Death-
Age and Stage of Understanding)

Be short and simple.

Answering questions with regard to the Sandy Hook tradegy can be done briefly.
Children want reassurance of their safety and security as well as yours.

Be Close.

Common reactions may include: separation anxiety, loss of appetite, fear of a repeat
lethal threat, nightmares. Donʼt expect your child to stray too far without you. Create
outings together or stay home in a peaceful atmosphere, perhaps use the fireplace and
make hot drinks for everyone. Sit together, welcome the quiet, just be with each other.

Be Heartful.

When parents allow themselves to get in touch with their own uncomfortable feelings,
without trying to ignore them or keep themselves hectic and anxious, they model coping
for their child by being able to compose themselves after showing true feelings of grief.
Parents can help themselves by openly calming themselves using soothing music,
lighting a candle, making a cup of tea in front of their child. Being centered, parents can
share more authentically and wisely.

Be Expressive of your beliefs.

When you say grace at meal times, acknowledge the worldview for peace as well as
acknowledging that “peace begins inside me”.

Be Tolerant of othersʼ beliefs

Teach your child not everyone has your familyʼs belief. People from different cultures
and backgrounds have different customs and traditions and thatʼs the way of the world.

Be Aware Children React to Death Differently Than Adults

Often children may not show sadness, but might act out, misbehave or have angry
outbursts. Changes in the patterns of their eating and sleeping. Be afraid to go to sleep
or wake with nightmares.

Be Peaceful.

Use Guided Imagery Relaxation Techniques
Sit with your child in the late afternoon or just before going to sleep, Listen to a guided
imagery recording; itʼs a natural way to turn the volume down on the stress response
and turn on the relaxation response. Children love to use their imagination, a skillful
narration of specific healing images and soothing music can help your childʼs brain
replace fearful ideas with calming ones. The use of guided imagery recordings before
your child goes to sleep is a highly effective way for your child to help himself calm and
settle.

Be Creative.

Create a tangible way to say “good-bye”
Place a flower on a memorial site; make a paper sailboat and send it off to sea, write a
message in a bottle and bury it or throw it in the ocean; write a message place it in a
balloon and sent it up to the sky.

Be Tender.

Remember the loved one. List the qualities of the person who you lost. Scape booking
the positive memories and photos is helpful. Evoking the tenderness of each otherʼs
spirit can be a life restoring event. Grief is gratitude for life; it is our opportunity to honor
the wholeness of the personʼs life regardless of the length.