If you are a parent who lives with a congenital heart defect (CHD), it can be challenging to balance the day-to-day demands of being a mom or dad while living with and caring for your own health.
Who to Put First?
It may be difficult some days to figure out who to put first – your children or yourself. When it is hard to find the energy to even get out of bed, it is important to take care of your own physical and emotional needs first. As a parent, this may not sound "right," but the best gift you can give your child is to also care for yourself.
A CHD can be unpredictable, as can your child's needs. Plan ahead.
Ask for help. When a CHD overrules parenthood, call friends, family members or a sitter to help. Parenting changes with older children, but you still need to be okay with reaching out to others.
Find time to relax. Whether visiting with friends, seeing a movie, meditating, or just reading, it is essential to make relaxation a priority.
Lower your expectations. Your parenting style may be different from your sister's or your friend's, but that does not mean you are not a good parent. Lowering your expectations will help make meeting the challenges of parenting with a CHD seem easier.
Planning for the Future
Every person with a CHD should have a living will. It not only notifies your family members about your wishes, but it also guides them in decision making if you are unable to speak for yourself.
Once you have a living will, be sure to:
Store it in a safe place in your home and tell your family members where it is located. This is not a document to keep in the bank safety deposit box. It should be located in a secure but easily accessible spot in your home.
Talk to your family about the instructions included in your living will. Family members are more accepting of a loved one's wishes if they are aware of what those are ahead of time.
Bring it to the hospital if you are admitted. Living wills are now required by hospitals so be sure to bring it with you if you are being admitted to the hospital.
Additional Information from HealthyChildren.org:
Additional information regarding congenital heart defects and lifelong cardiac care is available at the Congenital Heart Public Health Consortium (CHPHC) website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by a CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.