It seems as a parent of a child born with a broken heart, my field of vision is often confined to her heart defect. When I look at her, I can’t help but think about her in terms of the heart defect. I have only experienced two days of her life where I wasn’t aware that something was wrong with her heart. We celebrate anniversaries of surgery dates. Time is often measured by when her last cardiology visit or open heart surgery was, and I’m constantly aware of the milestones and accomplishments she achieves because I know many who don’t get those. Seeing her without thinking about that amazing but broken heart is difficult.
I’ve preached here before to make sure that Tetralogy of Fallot does not define your child–and I stick to that. She never looks at herself and thinks, “It’s pretty amazing I got to come to Disneyland and ride this roller coaster considering I have a heart defect” or “It’s been eleven years since my open heart surgery to correct my Tetralogy–it’s amazing what I’ve accomplished in that eleven years.” Those are my thoughts, reserved to me alone. Abby is just like any other eleven-year-old, whose thoughts focus on how cute the clothes at Justice are or how much she loves Taylor Swift or how excited she is to see the last Harry Potter movie. Her heart defect is a fleeting thought, a part of life like visiting the dentist or having a physical–nothing more to her.
I’ve heard adult CHD’ers claim that parents of heart children make a bigger deal of the heart defect than the actual heart patient themselves. I completely agree with that statement…after all, when a doctor hands you a brand new, tiny, beautiful baby and tells you their heart is seriously flawed, your world comes crashing down. The baby however, is blissfully unaware of her flawed heart, working overtime to keep her body alive. After all, when you walk into an intensive care unit and see your tiny baby covered from head to toe in wires, tubes, and bandages that are keeping her alive, the emotional impact is huge. That baby will never remember a thing from the traumatic experience. Parents naturally make a bigger deal out of their children’s heart defects because they KNOW the difference. They know that life should not be that way–that it isn’t fair!
There is a but to those statements…one that heart parents would do well to heed. There is a danger in overprotecting the broken hearted. Studies have shown that adults living with heart defects, which is now at 90% of those born with heart defects, who are overprotected during adolescence, suffer from heart related anxiety as adults. The study encourages parents to stress greater independence in their heart children which will foster improved psychosocial adjustment. They will be less likely to need attention due to their heart defect and will not need to define themselves according to their heart defect–in essence, having better self-esteem and social behaviors.
To be honest, that is easier said than done! Giving up the overprotective urge is difficult. But it can be done–within reason. I will always overprotect Abby to some degree. I tell her teachers about her heart defect and encourage her to sit out on activities if she feels tired or fatigued to an extreme. But she is allowed to take gym class (with a doctor’s okay). I worry about her when we ride roller coasters or swim in the ocean. Hot days create a broken record effect in which poor Abby hears me ask “have you been drinking enough water?” 100 times a day. But she is also encouraged to play outside on hot days. She is allowed to ride the roller coasters (with the okay from her cardiologist). She is taken to the beach or the mountains or backpacking or camping or swimming…just like all her friends. She is given every opportunity to live life to the fullest…after all, we didn’t do all in our power to save her life to make her sit it out on the sidelines!
I have to constantly find that fine line between overprotectiveness and being a responsible parent to a heart child. Abby’s cardiologist and pediatrician help me create those lines. Every activity is discussed and weighed out but, finding the balance can be done. I am far from perfect at it, but I try to take off the heart shaped glasses frequently, and remember that Abby is not just an eleven-year-old with a heart defect…but just an eleven-year-old!