When Your Body Fails Your Child

I love the saying that your children are your heart beating outside of you. It is so true. When you have a child, your heart grows. You feel love you never thought possible. But with that love can come very strong feelings. We want to protect them from everything.

But we can’t.  

photo courtesy of Sally Cavanaugh Photography

Many moms are blessed with perfect genes. They have no health issues, easy full-term pregnancies and their children have perfect health. I want to be that mom, but I’m not. Many of us bear crosses that are heavy when it comes to our children. Perhaps it’s a miscarriage, fertility struggles, a pre-term delivery, a stillborn, a genetic disorder and the list goes on and on. But there’s something that comes with all of it that is difficult for others to understand.


There’s nothing we could have done differently. We know that. But watching your child struggle because your body failed is heart wrenching. It hits you in the gut and takes your breath away. Each time I take my son to see the cardiologist, I feel physically ill.  Because there’s nothing I can do and my poor genes have given him a disease I would give anything to take away. It keeps you up at night and keeps you questioning “why”. Lord, please tell me why. Help me understand the lesson I need to learn from this.

I passed a rare congenital heart disease on to my son, which means lots of doctor’s appointments.

Many moms might not understand, but to my tribe that does, you’re not alone. I sit in the shower and cry along with you so no one can hear the heavy sobs. I act brave with you because I have to, but not because I feel it. I answer all of the questions that make me want to crawl into a hole, and some days I want to ask people to stop asking. I stay awake at night with you praying for things to be different. I do my best to trust God’s plan, but sometimes don’t understand it. I hold my child tight and break into tears sometimes when we’re alone, just as you do. And I know I’m a blessed mom to be able to hold my child like so many of you can’t today.

Take comfort that our tribe is larger than you might think. Know that so many of us are holding it together because we have to, yet we constantly feel the numbing pain. We feel like we sound like a broken record confiding in our friends over and over again, and hate that we can never seem to make them really understand. We need to talk to someone that understands.  Another woman that knows what it’s like to feel our guilt. I pray mama that you find your person. The fellow mom that knows what you’re going through. This is a tribe we wish we were not a part of. One that requires heartbreak and pain prior to initiation. Although it is a heavy tribe, I promise you aren’t alone. We are strong women and we will lift each other out of the darkness. Our journeys might not seem as perfect as some others, but they are still beautiful.

I passed a rare congenital heart disease on to my son, read about my story here.

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2 Responses to When Your Body Fails Your Child

  1. E February 7, 2017 at 7:12 am #

    Oh mama, he’s so lucky to have you. You are his greatest champion and have also walked in his shoes. He will learn so much from you and you’ll know better than anyone else how and what he feels. He has someone who has walked this fire before him.

  2. Tabitha February 10, 2017 at 5:48 pm #

    Thank you for writing this. I have a rare genetic connective tissue disorder, and my husband and I knew that I might pass it on to our children. We can’t diagnose until they turn 5, and my son turned 5 only 10 days ago. Two days later we got the official diagnosis that my 5 year old has it as well. My husband and my friends don’t really understand the guilt I feel. I know that my son will have pain for the rest of his life because of me. He has a high chance of being in a wheelchair because of my genes. Thank you for validating those feelings that I have.

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