By Allison McKay
Is it okay to feel okay?
I ask myself this question often, but as a mom of a heart baby, I’m not sure I should. I almost feel guilty. Our daughter, Jolie Jane, is about one and a half. She has several major heart defects, the main one being HRHS. She had her first heart surgery at five days old and an open-heart surgery around eight months old. She will have another open-heart surgery around age three.
Throughout her heart journey, Jolie has been so fantastic. So fantastic, I can almost forget she has CHD, sometimes. We haven’t had to use any medical devices at home and she has hit most of her milestones at appropriate times for her age. I follow and support CHD often, so I see all the different stories. A lot them are sad or people discuss their struggles. I guess mine is about a struggle too, but a struggle about not so much struggling, if that makes any sense.
Don’t get me wrong. We’ve had some struggles. I just feel like maybe they don’t compare to the struggles a lot of other children and families with major heart defects face. Both times Jolie had her heart surgeries, we were in the hospital for almost a month. One time her lung collapsed and both times she struggled to maintain good enough oxygen levels to go home. This led to her having blue hands, feet and lips, which are the biggest external symptoms, aside from her awesome looking scar.
I wonder if there are other CHD parents out there that feel the same way I do. If so, I am writing this to reach out and let people know they aren’t the only ones. But maybe we shouldn’t have to feel these things just because our children are doing well with their conditions, although I’m not sure we can help it.
Even though the point of this article is to share my feelings of guilt, this has still been a very difficult and scary process. We have spent many nights crying, praying and wondering if what we were doing would affect her heart. Can we let her “cry it out,” or will putting a small blanket in her crib make her oxygen levels worse? We know it’s okay to do this for another child her age. My story and feelings could change in an instant, but I hope this connects with other CHD parents.
Bio: My husband and I live in Columbus, IN where all of my family resides. I have been in the design field for about five years and my husband is an engineer. Our daughter Jolie is our first child, and we have three fluffy cats.