A Word to Grandparents

When your grandchild has been diagnosed with a serious medical issue, it opens a new and very different chapter in your relationship with your grandchild and with your own child.

New beginnings are never easy, especially when traveling in uncharted territory. Your adult son or daughter will be on an emotional and physical roller coaster trying to juggle their time, energy, and resources in order to cope. Give them the gifts of patience and understanding, and your love, care, and concern.

Some things are beyond our control including a diagnosis of a hereditary disease. However, we do have control of the attitude we choose to develop. A positive attitude will make a world of difference to yourself, your child, and most importantly, to the well-being of your grandchild.

Talk to your son or daughter. Let them know you are there to support them. Ask them to tell you specific ways you can help.

Take good care of yourself, so that you can cope with the stress and have the energy to help out if you are asked. Consciously strive to get enough rest. Exercise. Eat good meals. Keep nutritious snacks available, instead of junk food.

Recognize your feelings and allow them to be expressed, either by keeping a journal or talking things over with a trusted friend. A few meetings with a member of the clergy or another professional counselor can also be a big help.

Get in touch with other grandparents who have faced a similar situation. This provides a wonderful way to share feelings and ideas and to keep a positive attitude. [Call the VHLFA hotline, and ask to be put in touch with another grandparent.]

Your grandchild is a child first. The disease is only a part of him or her. Recognize his or her talents and abilities. Avoid rewarding any negative behaviors.

Balance your time and your attention among all of your grandchildren. Don’t favor or ignore the one who is sick.

Please note: For families with von Hippel-Lindau disease, a diagnosis of VHL may also bring a request for you to participate in genetic testing. This is important to determine whether others in the family may be at risk for VHL. VHL may occur for the first time in a grandchild, as a random occurrence in nature, or it may have lain relatively dormant in a family for one or more generations. Your participation may be key to saving the life and health of others in your family.

A Handful of Hope is available from Pilot Parent Partnerships, Inc., 4750 Black Canyon Hwy, #101, Phoenix, AZ 85017.

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