As a CHD parent you have a tough job. You need to learn many new skills so you can be your child’s medical caregiver at home, and you have to manage the business side of an illness – which includes all the effort and money it takes to get your child the best care you can.
Even though you want your child to have the freedom to play and do all of the things that kids without a heart condition can do, you know there are real limits that you must enforce to keep them safe.
CHD parents must try to find the right balance between being smart and being overprotective of their vulnerable child. In time, you will get to a point where most days feel “normal” and you are not constantly focused on your child’s heart.
At the beginning, learning to care for your child at home can be a struggle: you wonder if you’re doing everything right, and worry that every little change in your child is a potential health problem. Have confidence that you will grow into the world’s expert when it comes to your child’s health – but it will take time.
You have a lot of control over how your family will go through life with this illness. You also have an important role in shaping how your child feels about their CHD. Your attitude and outlook can make a real difference. With love, encouragement, patience, and positivity, your family can thrive even in difficult times.