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A Recent Diagnosis
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Where is Hope
"Since my child's diagnosis, I seem to be losing hope and I am looking at the whole world as a bad place. I used to be so optimistic. Where is hope in all of this?"
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all¡K
--Emily Dickenson
What Life is Like for You
The diagnosis of your child with a life-threatening condition strips away all the superficialities in life. You're focused on the essentials. This mindset, says anthropologist and author Angeles Arrien, is the Way of the Healer. "The Way of the Healer or Caretaker," she writes, "is to pay attention to what has heart and meaning." Paying attention to what has heart and meaning opens us and gives us access to the deepest of human resources: love, gratitude, acknowledgment, validation and hope.
As parents working to treat their child's disease and to cope with the devastation, we need to focus our energy like a laser. With our child's life at stake, we are called to be the champions for our child and his or her needs. As child advocates, we may need to challenge convention in order to carve a new path of discovery. We may need to push beyond perceived limits in areas of research, treatment and care. Hope lights the way in this quest for answers for our child.
Hope is your greatest ally. You hope that your child will survive this illness and go on to live a normal life. This hope is the motivator, mobilizer, and energizer that keeps you going. Nurture your hope, even in the midst of obstacles. Recognize when your hope needs bolstering and seek support both from the outside and from within yourself. Keep the flame burning.
What is Hope?
To hope is to "look forward to with confidence or expectation" (American Heritage Dictionary of the English Language, 3rd edition, 1996). It is the capacity to transcend our immediate circumstances and not only see that there are other possibilities, but also believe in their coming true.
Hope is a wellspring of inner strength. It evokes a light at the end of the tunnel. It tells us there will be an end to the darkness. Hope is like a candle, a fragile but compelling source of luminosity that illuminates the way through a complex and difficult journey.
Hope gives us many gifts. Hope:
- Gives us the strength and fortitude to sustain long periods of pain and discomfort.
- Helps us rise above feelings of despair.
- Gives us the resolve to persevere through¡Xand sometimes fight our way through¡Xthe medical system as we search for the best course of treatment for our child.
- Gives us the determination and courage to be a strong advocate for our child.
- Inspires others. Hope is infectious. If we as parents are hopeful, we can inspire medical professionals to optimize care and/or take calculated risks. It can inspire your community to rally around your child and family.
What to Think About and Do with Respect to Hope When Your Child Has a Serious Illness
Recognize Your Relationship to Hope
How full is your reservoir of hope? Some people tend to be generally more hopeful or optimistic than others. There are many possible reasons for this, but they are not so important. The more important thing is to recognize where you are with respect to hope and, if you feel you need to shore up your hope, do something about it.
Hope can be bolstered by practicing attitudes such as: -
Patience Tolerate delays, and work up to a sense of overall calm that lets events unfold in their own time.
- Persistence Have the determination to keep going no matter what the obstacles.
- Courage Develop an attitude of confidence even when facing the unknown. You can work on this from the outside-in. Start by "faking it" on the outside until you "make it" on the inside.
- Serenity Work as hard as you can, giving it your all, then release any attachment you may have to the outcome. Practice a sense of composure and quiet stillness. Think "all will be well," and mean it.
- Optimism Keep a vision of a positive outcome.
Optimism is closely related to hope. Psychologist Martin Seligman, the author of Authentic Happiness, suggests that we can learn to build up our sense of optimism. It¡¦s a matter of recognizing the pessimistic thoughts that can take you into a downward spiral, and learning how to argue with them. He calls this the "ABCDE model" First, recognize that Adversity is likely to test/trigger certain Beliefs.
Strain on Marriage
The fact that your marriage is undergoing some stress because of your child¡¦s illness may start you to think about the possibility of divorce. Underlying that thought are some beliefs. We all have many unexamined beliefs, many of them negative. They may be beliefs about the strength of your marriage, or about your spouse¡¦s ability to deal with stress, or doubts about your own resiliency. These beliefs have Consequences. They can lead to sinking or panicky feelings. You might even start a quarrel with your spouse over nothing. The way out is by Disputing those beliefs when they arise. Say to yourself, "Hang on a second. Is this really who I am? Who my spouse is? Or am I overly tired or stressed? Could that be making me more vulnerable to being hijacked by negative beliefs? Isn't it actually true that we love each other a lot, have excellent communication, and that our marriage is really very strong? "You will feel Energized when you dispute the pessimistic thoughts successfully. You will feel lighter and more focused." (Seligman, pp. 93-94)
Recognize that Others May Have a Different Relationship to Hope
It is possible that others who are close to you will be in a different place with respect to hope. They may be feeling more or less hopeful than you are. This can be stressful, especially if it¡¦s your spouse (or someone else who is close and involved in decision-making for your child) who has the different view. It¡¦s important to recognize when there are conflicting levels of hope. Then, consciously work on aligning your differing points of view. Support each other in developing your relationship with hope.
Some Resources
What are Some Sources of Hope?
Here are some sources you can turn to that will help you bolster and maintain hope. Your most important inner resource is your belief system. How do you nourish your reservoirs of hope? Many find solace in turning to a Divine Source. Do you pray? Meditate? Walk in nature? Do you have a spiritual advisor?
There are also external sources you can turn to for support in keeping your hope strong and vibrant:
People, such as your spouse, other family members and or friends. Hope seems to be a social phenomenon. We can " catch it from others and others can stoke it in us. Reach out to people who are strong in hope. These people may be clergy or spiritual advisors, they may be people who have gone through a similar struggle as yours, or they may just be friends.
Stories of Hope in Books - Hope has many faces.
It All Begins with Hope: Patients, Caregivers and the Bereaved Speak Out by Dr. Ronna F. Jevne
Finding Hope: Ways to See Life in a Brighter Light by Dr. Ronna F. Jevne and James E. Miller
Hoping, Coping & Moping: Handling Life When Illness Makes It Tough by Dr. Ronna F. Jevne
Authentic Happiness by Martin Seligman
Hope and Despair: How Perceptions of the Future Shape Human Behavior by Anthony Reading, M.B., B.S., M.P.H., Sc.D.
Chronic Kids, Constant Hope by Elizabeth Hoekstra and Mary Bradford
The Resilient Family by Paul W. Power, Sc.D., and Arthur Dell Orto, Ph.D
Shelter from the Storm by Joanne Hilden, M.D., and Daniel R. Tobin, M.D., with Karen Lindsey
Poetry and Quotations
Music that inspires you
Movies
Lorenzo's Oil
Web Sites
Authentic Happiness
The Hope Foundation of Alberta < http://www.ualberta.ca/HOPE>
Article submitted by and printed with permission from Sophia's Garden www.sophiasgarden.org
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