My mom. If you know her, you know she is a strong lady. Confident and wise. Practical and kind. Her greatest treasure is her family, specifically her three children. She is also one of the wisest people I know, gleaning from her faith in the Lord and her experiences that have taught her and changed her. One of those experiences, probably the one that has shaped her the most, was having two children with congenital heart defects. In the way that only she can be, she was strong when she needed to be and relied on God with all that she had. She has been able to share her strength with others going through similar things over the years. Here are a few things, in her own words, that she has taken away and learned from her journey and experience being a Heart Mom: No matter how much you want to take on the pain and suffering from your child, you simply cannot. It is so hard to watch your child endure all that goes with having a CHD: tests, procedures, surgeries etc. Not being able to prevent or eliminate becomes a test of your own mental strength. . No matter how complex or difficult your child’s medical issues are, there is always someone else in the next room or down the hospital corridor that is worse. Remembering that helps to give you perspective. . You can’t let the fear of someone else’s tragedy overwhelm you. Not everyone has a good outcome. Procedures fail and sadly children die. You can not spend too much time dwelling on those sad stories. It can steal your hope and your belief for the best outcome for your own child. · Extended families are so essential. They make meals, take care of siblings, do your laundry or just stand next to you as you wait. If you have that kind of family - and we did - be grateful! · Every gesture, no matter how small, has an impact on your fragile emotional state. Someone we knew casually gave us a basket filled with nuts and snacks before we went off for surgery. It became a shared blessing in the ICU waiting room where we joined other CHD families. Today it still sits on my counter as a daily reminder of the kindness of others. · Be with other families whose children share the common fate of multiple surgeries, tests and modified living. It is a common understanding that no one else truly gets unless you are a parent of a child with CHD. Maybe it's a shared fear of a bad surgical outcome or a bleak prognosis or a worsening of a problem. It is palpable when you are with them. · Your child may be angry at you for bringing them to the places that they experience so much fear and pain. It may not even be something they understand, but it is there nonetheless and it can last longer than the actual situations themselves. · You are your child’s greatest advocate and caregiver, but the time will come when you must begin to transition responsibility to them as they grow and mature. It is a bit scary, not wanting to hover or interfere. Wanting to make sure they know the importance of self-care. Once their lives hung in the balance but now they have to learn to balance their lives. · Last and most importantly, I learned to lean on God to carry me through the days when we could not even speak in the light of day of the possibility of the loss of our child. Talking to my husband in the dark, praying for the strength to face whatever the future may hold. Desperate to hang on to the confidence of a happy future. I could not have survived without depending on God to survive each day!
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