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The Informed Parent

Facing The Unthinkable

by Carolyn Warnemuende, M.S.
Published on Feb. 06, 2012
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Since its inception in the late 1990’s I have written about most issues that parents and grandparents face. I have never addressed what happens when families receive the diagnosis of a serious or terminal illness in their child, or when their child dies. Writing about the unthinkable is something I haven’t felt equipped to do.

Now I do. In September my six-year-old grandson was diagnosed with a malignant brain tumor. For those of you who have faced a similar diagnosis or the death of your child, you know that it is devastating. Our little guy’s surgery was successful, and now he is undergoing daily radiation treatments. We are filled with gratitude for the caring medical staff and for the love and prayers offered in his behalf. While we hope for the miracle of his complete healing, we know that this does not always happen.

Intellectually, all of us understand that even in the midst of grief and loss, everyday life goes on. But it doesn’t feel like that. Keeping a balance between accepting and honoring our grieving and moving ahead is difficult. On some days it feels impossible. This month I’m offering some steps that I’ve taken that may help you, too.

Share

Sometimes we feel as if we shouldn’t share our sadness and sense of helplessness with others. Do. Friends want to support you in times of distress as well as during happier times. They cannot reach out unless they know what you are going through. I have found that friends are eager to give their love and support when given the opportunity.

Become a Receiver

Parenting requires lots of giving. Parents who work give on the job as well as at home. They also often give time to their child’s school or other organizations. In times of loss, allow others to give to you. Accepting physical and emotional help from others may not be easy. By allowing others into our lives to nurture and give, we renew our own depleted selves.

Turn to a Higher Power

Whether you believe in God or another power greater than yourself, turn to it. Praying, meditating, walking in nature, and immersing yourself in music and fine literature help sustain during times of the unthinkable. Turning to a higher power with commitment can move us into compassion for ourselves and for the pain others are experiencing. We are not alone. 

Stay in the Present.

While this is not easy, it helps to maintain sanity. If you are like me your mind can wander to the darkest of places. By staying in the present instead of thinking ahead to what might be, we conserve our energy to deal with what is happening right now. We begin to take joy in little things and see with greater awareness. In the darkest of moments, parts of life look very beautiful. Our child’s smile or laugh, a friend’s hug, autumn leaves or lightly falling snow--all are precious gifts.

Nurture Siblings.

Sometimes we forget that the siblings of the sick child feel as helpless as we do. Perhaps it looks as if their lives are progressing as usual. Or they may become “extra good,” or begin acting out to receive attention. Some siblings withdraw. Regardless of how they respond to their brother or sister’s illness or death, they need support. They cannot comprehend or process what is happening. They are afraid. If you do not have the time or energy to spend with the children, ask a relative or friend to step in for you. Make an effort, though, to spend some time with them each day. It is good for both of you. Most hospitals have social workers on staff to assist families. Take advantage of this service. These trained men and women are skilled at helping families adjust to what will become the new normal.

Be Grateful.

No matter how unbearable a situation there is always something to be grateful for. Keep a gratitude list. Write down anything you can think of that makes you thankful--kind doctors and nurses, an understanding friend, a serendipitous event, a day of sunshine or the first flower of spring. In dark moments look at the list as a reminder that there are some gifts even during this time. 

See Miracles.

Miracles are not huge events that dazzle us. They are everyday things that we see as signs that life will go on for our loved ones and us. Sometimes I’ve needed to remind myself that the sun rises each morning and sets each night, and that the seasons change regardless of what is happening in my personal world. That feels miraculous.

Practice Faith.

Faith is the belief in things unseen. If you believe in a higher power, have faith that that power is at work in the life of your loved one. Whether you do or not, have faith that the doctors and nurses are giving their very best to your child. Believe that family and friends are holding the highest and best prayers or thoughts for min. Believe that when your faith waivers, others are holding it for you. 

Grieve.

There are times to be strong and times to let yourself go into the depths of your grief. Denying your pain and loss do not help. It hinders moving on. Share your feelings with a trusted friend or relative. Attend a grief group offered through most hospitals.

Be Honest.

Siblings will ask about their brother or sister. Other family members and friends will ask questions. Tell the siblings as much as possible in language they will understand. You might say, “Tommy is very sick. Some days he feels worse than others. The doctors and nurses are helping him get better and feel comfortable.” If they ask if their sibling will die, you can say that at this time you don’t know. If you do know, say something like, “Tommy is very sick, and he may die. The doctors and nurses are keeping him comfortable. He loves you and knows that you love him.”

When our child is very sick, terminally ill, or has died, we are devastated. We may feel like our life is ending. Life as we have known it is. Our life is not. Everyone grieves differently and at a different pace. As parents and grandparents we must allow ourselves to grieve and also to be strong for our child. There is always a path through our personal pain. Perhaps some of the steps that are helping me will help you, too.




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