The Days She Died
Baltimore, Maryland, 2010.
We sat at a long table with windows at the far end of the room. A Chinese doctor and his assistant sat across from the four of us; myself, my mother, father, and husband. The doctor’s words echoed around my head like footsteps down an empty corridor. I knew what he was saying, but my mind told me that we were misunderstanding because of his thick accent. His assistant confirmed that I was understanding completely. There was nothing to be done. My daughter had Gaucher’s Type 2.
She died right then and there, inside that room. They could make her comfortable, but they couldn’t save her. My Elizabeth was dead. I barely remember leaving the room and walking down the hall to see her. In the middle of tubes, wires and bedding lay my Elizabeth. She was unaware of what was happening to her, of what was going to happen.
There is a certain understanding of grief as it occurs after a death. What is not understood is that there can be grief prior, which is referred to as anticipatory grief. The stages of anticipatory grief are not that different from the stages of the grief felt after a loss. Both anticipatory grief and grief felt after a loss include symptoms such as sadness, anger, forgetfulness, depression, and isolation.
Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death. It is important to remember that grief does not always move in a step-one, step-two process. As the author Benjamin Allen says in an interview, “Each person really goes through their own journey through grief and how they do that really has to be tailored their what is authentic to them. There is no cookie-cutter way of experiencing grief in either preparatory or ‘after loss’ grief.” Grief moves forward, backward, and sometimes one experiences more than one stage at a time.
Some days were harder than others. There were days when I sat in the glider in her room and watched her sleep, accompanied only by the sound of the ventilator breathing for her. There were moments when the depression would hit the hardest, often when I was alone at night. Depression is a normal part of the grieving process, whether the grief is anticipatory, or not. The individual may experience persistent sadness or hopelessness, frustration, lack of energy, weight changes, recurrent thoughts about death or suicide, etc. If you or a loved one experience these symptoms for a long period of time, it is important that you seek medical help. If hospice is involved, there are resources available to the family, as well as online resources. As a member of the grieving person’s support, it is vital that you reach out to them often.
As parents, we are always concerned for our children’s well-being. A terminal diagnosis can leave a parent, or caregiver, feeling helpless and, often times, at fault for the illness. When you were a child and you fell from your bike and scraped your knee, it is likely that your mother or father swept in, cleaned your knee and gave you a hug to make you feel better. What happens when the injury or illness can’t be fixed? I felt like a failure as a parent. I was supposed to fix her. This is a common feeling. Remember, it is not your fault, you are not a failure. You are doing everything you can.
End-of-life preparations are difficult to maneuver through on your own. Funeral preparations, do-not-resuscitate orders, and advance directives are important steps in preparing for the death of a loved one. Hospice, nurses, and physicians can assist in making these difficult decisions by providing explanations and information for each step. Use the resources available; they are there to assist in this difficult process. Something to consider is organ donation that can further the possibility of treatments and cures. When my daughter passed, I had her organs donated to assist in furthering research for her disease. A physician helped me decide what organs would be beneficial to their research.
Holidays, birthdays, anniversaries and other family-centered events are going to be difficult. This stage is hard to put into words because there is no adjustment to losing a child.
Hershey, Pennsylvania, February 1, 2011
I held Elizabeth in my arms as we detached the tubing from her trach. The doctors put her into a medically induced coma to stop the 6-hour seizure. She laid there on my lap, sleeping. That is how she died, sleeping peacefully.
It has taken time, however, in the end, I know that I did everything I could have possibly done to provide comfort and love to my Elizabeth.
