Hard Times

When you're the mother of a "heart baby," you tend to seek out others with similar experiences. It helps to know you're not alone. Although I love reading their stories and cheering their victories, I have often felt alienated from other heart moms. Most other heart babies do not have chromosome abnormalities too, but in the course of learning about other heart children, I have found two who have chromosome abnormalities as well as HLHS. I have followed the stories of these two heart babies with whom I have felt an extra special bond for several months.

Baby Eden was born in February with HLHS and Down Syndrome. The pictures of her on her family's blog are absolutely gorgeous. Her family has been such an inspiration to me. Baby Eden has two big sisters. In the midst of Eden being in the hospital, her parents decided to take their two older daughters on a break. They arranged for other family members to stay with Eden, and took a short trip with their other daughters. They showed me how important it is to balance the needs of the entire family. Feeling a part of Eden and her family's journey has been so special to me. Eden went to Heaven on July 5th.

Baby Nolan was born just a few weeks after Owen, with HLHS and a rare chromosome abnormality. His pictures on his carepage show such a strong personality! I received several messages of support from one of his family members - she is wonderful. Nolan went through the second stage surgery early, at three months of age. He had a dangerous arrhythmia that caused him to need the Glenn early. His arrhythmia continued after the surgery, but he was able to come home with his mommy and daddy. This family has had SO MUCH prayer and support. Nolan went to Heaven on August 21st.

I felt as though both of these families really understood our situation. Not only do we face the unknown of Owen's heart health and lifespan, but we also face the unknown extent of his disabilities. The weight of this uncertainty can be crushing, and it meant so much to me not to feel alone. I admit, now it feels a little like Owen is "next." We choose not to live our lives with this knowledge tainting our thoughts every day. But the truth is, Owen's situation could change at any time, and we probably will not get to have him with us as long as we want. We find peace in our determination to give Owen the best life that we can, and in our knowledge that God has been taking such good care of all of us. And it's hard to be scared or sad when you're looking at his sweet little face. Please pray for the comfort of these families and others who have lost their precious little ones.