Primary Children’s Hospital has connected us to families that have had a child with HLHS. Last week I spoke to a mother who delivered a baby girl with HLHS. I am very thankful for her insight and look forward to speaking with her more. She and her husband chose comfort care for their baby and still remain at peace with their decision to send their daughter home to her heavenly father. I was unprepared to hear that after their daughter was born she lived for 15 days. She was born the end of January and sadly died on Valentine’s Day.
Michael and I have been preparing to say goodbye to our baby at the hospital. We have not prepared anything at our house to bring the baby home. I am not sure how these parents even sleep when they bring their baby home. I will be afraid to go to sleep, I will be afraid to miss his last breath, and I will be afraid to miss the last moment of his life… How can any parent ever sleep when there is the possibility that they will awake to find their baby dead? Can a parent go 15 days without sleep?
Even though it sounds strange that I am concerned the baby will live longer than our stay in the hospital, the death occurring in the hospital creates a separation between the sorrow and our home life. Is it bad that I feel that way? It will unquestionably be more difficult to say goodbye to or little boy in our home, and thereafter there will be so many reminders of him in our home. Memories such as the first time he is carried through the door of our home, his cradle, his blankets, his clothes, and that scent often recognized by mothers of newborns.
How does a parent deal with facing grief through these everyday reminders? After his death, do I immediately hide away everything that reminds me of him? Of course that would not be entirely possible; not all memories can be hidden away. Do I leave everything were it is so that I can cherish his memory for as long as possible? Or will this be too painful? How long do I keep his things? Forever? Will I be able to deal with rediscovering boxes of his belongings months or years down the road? Or do I want to completely eliminate these reminders? Will I create a box of for his belongings that I can easily retrieve and feel and touch so I can relive as much of his life as often as I can? Or will that be too painful? I am afraid of how I will be able to cope with all the emotion…