We met with the Carbon’s to talk about their daughter Elizabeth born in January 2007. Elizabeth was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) just like our baby. The Carbon’s chose comfort care and it was very helpful to talk to them about why they made the decision and the effects of that decision.
As we spoke to the Carbon’s the weight of their grief fell upon me. After more than two years the sadness that exists in their life is still overwhelming. This couple seems to be a very spiritually in tune couple that believes the decision they made was absolutely the correct decision for their family; even with that conviction and resolve in their decision there is much grief and sadness. Their grief and sadness felt to me like despair. I am fearful of the same fate in my household. Will the sadness of losing a child seep into my home? Will the sadness cloak and overshadow all other joy or happiness that could take place? The thought of being so sad for so long is very frightening.
The Carbon’s helped us understand details about the birth and the short life of an HLHS baby which has further prepared us for Henry’s birth. They also informed us of what to expect with hospice care. They talked about how their two older children dealt with the death, which gave us insight into what to expect and how to help Drake and Warner deal with the loss of their brother.
We are planning on Henry coming home with us from the hospital. The Carbon’s baby, Elizabeth, lived 15 days, and sadly she died on Valentine’s Day. How can something so tragic end even more tragically. Forever Valentine’s Day, at least for their family, will be a time of sadness instead of a time to express love. Today I am 90% for comfort care.