Parenting, by itself, brings many new challenges and opportunities to learn. Parenting a child with a chronic illness brings even more. A chronic illness is one that persists for a long time, sometimes for life. Examples of chronic illnesses are diabetes, asthma, and cancer. The needs of child patients are as varied as the types of chronic illnesses. However, parents of children with a chronic illness many times ask the same questions. Questions such as "why my child?" and "how did this happen?" Although we may not have all the answers to questions such as these, we can find counsel and direction from those who have gone through this experience.
The Family: A Proclamation to the World states: "All human beings-male and female-are created in the image of God. Each is a beloved spirit son or daughter of heavenly parents, and, as such, each has a divine nature and destiny..." There is comfort in knowing that your child is a child of God, and that He knows you and your child, and everything you are going through. These difficult experiences are a part of the growing process of this life, and although they may be difficult, there are things that can be done to help you, your child, and your family to cope.
After the Diagnosis
It is hard to prepare for the feelings that come with your child's initial diagnosis. It is important to acknowledge these feelings and allow yourself to feel them without feeling guilty. There are some things you can do that will help ease the pain these feelings may cause.
Keep a Positive Attitude
Learning about the diagnosis and dealing with the day to day responsibilities of the illness can bring feelings of fear, hurt, and confusion for you and your child. Keeping a positive attitude through it all will help you and will also help your child to cope more effectively (Patterson, 1991, p.495).
Becoming informed can help alleviate fears and give you practical suggestions to do what you can to cope and better treat your child's illness at home. Physicians are a great place to start. They can give you information, and direct you to more. Another great source of information and support is parents and children who are going through the same thing.
Find Other Parents and Children Going Through the Same Thing
Sometimes what helps most is knowing that you're not the only one going through this. There are many websites and organizations available to help provide you with information and support. Some of them are listed at the end of the article.
Helping Your Child
Being diagnosed with a chronic illness is just the beginning of a long road for you and your child. Every child adjusts to their illness in their own way. Although each situation is unique, there are some things all parents can consider doing to help their child live as normal a life as possible.
Communicate with Your Child
There is no better way to ease fears and to build trust with your child than to communicate openly and honestly-in an appropriate way for their age level-about their illness and any medical procedures they may have to go through. Giving your child choices in treating their illness when possible will help him or her to feel more responsible and in control of it.
Give Your Child Choices
One of the primary purposes of growing up is learning to become independent and make choices. This is the same for children with a chronic illness. While some things are mandatory--such as certain medications--some are more flexible. Find out where you can be more flexible and let your child make the choice that is most appealing. This will help the child feel more responsible and in control of the illness. It will also give them a sense of accomplishment.
Support their Friendships and Activities with Peers
Encouraging your child to enhance his or her talents aside from their illness can help facilitate friendships that otherwise may be hard to make. Friendships with peers give children a sense of belonging and support. These friendships can also help your child feel that he or she is normal and provide an identity separate from his or her illness.
Coordinate with Your Child's School
Good communication with your child's school is essential when you have a child with special health needs. There are many things a school can do to help prepare for a child with special needs.
Helping your Family Cope
The chronic illness of a family member is a situation where all family members are asked to adapt. This can put a lot of strain on a family. The following are ideas to help your family cope and even become stronger in the face of a chronic illness.
Stick to a Routine
A family is best able to cope with the needs of a chronic illness when the needs of that illness are integrated into a regular family routine. This routine includes the delegation of responsibilities and an organized schedule of appointments. It is important to remember the need of flexibility in your routine to ease the stress that accompanies too many obligations.
Open and honest communication with your family, and especially your spouse, can help ease fears, ease stress, and make caring for your child more a part of normal, every day life.
Be Committed to and Seek Comfort from your Family
The most important trait in resilient families of children with special needs is commitment to each other as a family (Patterson, 1991, p. 495). This commitment can be shown by being optimistic, sharing responsibilities with each other, and doing activities together (Patterson, 1991, p. 496). By paying attention to your family as a whole, you emphasize the importance of each family member and let each of your children know how important and loved they are.
The Family: A Proclamation to the World states: "extended family should lend support when needed."(¶ 7) Many extended family members are ready and willing to lend a hand. Turn to them when you are in need of support and strength.
Remember your Other Children
Once you as a parent have become informed about your child's chronic illness, be sure to also communicate with other members of your family, especially the child's siblings, about the child's diagnosis and the nature of the child's chronic condition. Be sure to provide information that is geared to the child's level of understanding.
Just as you and your child who has a chronic illness are experiencing different emotions, so are your other children. Your children may experience jealousy, anger and depression. Parents need to exercise care to provide time and energy to other children in the family and still meet the needs of the chronically ill sibling.
Taking Care of Yourself
When caring for your child and adjusting to this new challenge in your life, it is essential to remember the importance of caring for yourself. The following are things you can do to ensure that you are being taken care of as well as your child.
Know Your Limits and Be Willing to Take a Timeout for Yourself
Make it a priority to do those things that are essential and reward yourself for doing those things. Don't be hard on yourself if you don't accomplish all you want to. Just as you are flexible and understanding with your child, be the same way with yourself.
When things are getting too hard to handle, sometimes it helps to take a timeout. Give yourself time to do something you enjoy. Many times exercising can help to clear your mind and release tension.
Take Advantage of Offers to Help
Many friends and family members are looking for opportunities to help. Take advantage of these. They take some of the stress off you while strengthening the relationships you have.
Make Use of Respite Care
Respite care is a valuable resource to those caring for a child with a chronic illness. It is short-term specialized childcare that allows parents to take a break from their sometimes overwhelming responsibilities.
The Family: A Proclamation to the World states: " Each (person) is a beloved spirit son or daughter of heavenly parents, and, as such, each has a divine nature and destiny" (¶ 2). Although the road may seem rough, there is comfort in knowing that your child is special and was sent specifically to you. You have the strength and the love only you could give and, in the end, that is what really matters.
Written by Melanie Churchill, Research Assistant, and edited by Stephen F. Duncan, Professor, School of Family Life, Brigham Young University.