How Do You Feel?

Everyone asks this question; it seems to be the natural thing to say. If you have asked us this before, we've probably not given you a straight answer. To be honest, this is not our favorite question.

Generally we just respond, "Okay". People seem to understand that we really arenít and just leave it at that. A full answer would take too long to give and be too painful for us to share. Itís a complex topic. This is easier to discuss if youíve been through a similar experience. Then we donít have to talk at all; you already know.

The full answer to this question depends on what you are really trying to ask:

Weíll talk about it now. But after this, promise you wonít ask us again.

What is your state of mind?

Perhaps the best answer to your question can be stated in a single word: grief. Grief is not a single emotion. (Refer to the following article The Stages of Dealing with Grief.) We go through many ups and downs. Of the many aspects of grief, panic is the most prevalent emotion. It always seems to be with us, just barely contained. Each new bit of bad news or change for the worse will send us staggering. In a few days, we recover. We keep finding that we can live with more pain and not collapse. (What is our limit?) But we are constantly anxious about what tomorrow will bring. Everyday we had to struggle with the question if Faith would have a tomorrow?

Our lives have been reduced to living in the present moment. During those times when memories of past events come flooding into consciousness, it can be almost too much to bear. We find it necessary to clear these memories from our minds and focus again on the present moment. Dwelling in the past is too bittersweet at this time. Our eyes fill with tears and it is difficult to handle even the simplest of tasks.

If the past is a painful place to visit, the future is not much more welcoming at this time. The future looks like an empty place in our hearts right now. There is a black hole where once our dreams and hopes and plans resided. We have no long range plans, nor career or personal goals at this time. We will return to the daily routines that we know and are comfortable with, if only because we donít know what else to do.

We have tried never to let our emotions keep us from caring for Faith. We have spent each day enjoying each moment with her. Above all, we have spent this time learning how to turn our love into the care that Faith has needed.

What is it like to lose a child?

This is the most difficult and emotional question of all. It is difficult to see anyone faced with a long illness. Itís worse to know that there is no cure. It makes you desperate to have so little time. Itís shocking to see someone die. It breaks your heart when it is a youngster. Your world is destroyed when it is your child.

Throughout Faithís illness, we have had to confront the prospect of her death. It is a ghoulish specter that has haunted us continuously. (See the Article Measures of Decline.) Faithís doctors and nurses have guided us gently and compassionately through this from a medical perspective. We have been forced to cling desperately to Faith, especially as she has become more and more debilitated. But the horrible reality is that the tumor is continually pulling her away from us and we can only watch helplessly.

An episode from Faithís Treatment Diary

On Saturday, September 1, 2001, Faith suffered a serious setback. She had been admitted to the hospital the previous day after she became very pale and her breathing had become rapid and strained. Saturday she had started to show signs of recovery, but at 4PM Faith began to have another episode of strained breathing. She seemed to be struggling much more to get a breath. We tried to calm her but nothing we did would get the breathing problem to abate. We suddenly noticed that Faith was now moving her right arm up towards her shoulder. This was surprising since she had not been able to move that arm since the beginning of June. She was experiencing a tumor-induced seizure. When the seizure abated, we were distressed to find that Faith was no longer able to use her left hand. She also seemed unable to nod or shake her head. Our only two ways of communicating with her appear to have been taken away. Was she in a coma? Was she trying to respond to us? We had no way of knowing.

On Sunday, Dr. Lauren Kondev of the Neurology Department came to evaluate Faith. The doctor began by asking Faith if she is willing to be tested. We advised the doctor that Faith is no longer able to respond to us. However the doctor calmly looks at Faith and tells her that she can answer her questions by simply blinking her eyes. To our amazement, Faith blinks. She even appears to giggle at the thought that she can communicate with her eyes. She then goes through the whole battery of neurological tests just like it was a normal clinic visit. She is still with us! We can still communicate with her! She is weak but still has some muscle control left. We still have our little girl. Hope returns to us. Our hearts swell. We cry tears of happiness.

Our whole world has been reduced to the blinking of Faithís eyes and yet that is sufficient. Faithís oncologist, Dr. Lawrence Wolfe, has a succinct definition for lucidity: the ability to receive love and return love. The blinking of her eyes ó that is enough love for us. We realize now how completely awful it will be to lose Faith for real.

This whole process has forced us to confront the question of how and why we give our love.

So, in part, we cope by giving our love without limits and without condition. (This is how parenting is supposed to be done anyway, right?) At times, we cope by isolating ourselves in our grief. We cope by clinging to our family, friends and caregivers who also have shown their unconditional love for our daughter. We cope by imagining how the memory of Faith and her special qualities (see the Article Faithís Gifts) will help us to see the beauty in this world, even if she is no longer a part of it.

Where do you find the strength?

Within hours of receiving Faithís diagnosis, I placed a call to Colleen Sullivan at TeamstersCare. Colleen had guided us through any number of medical crises before, including those surrounding Faithís birth. This problem was far more serious and we needed her help badly.

Those first few calls after receiving the news were unbelievably difficult. I sobbed openly, unable to control my grief. "How will we get through this?" I asked. Speaking from personal experience, Colleen told me "Children have a lot of strength, a lot of resilience. In the darkest moment, Faith will get you through this." At that instant, such an idea seemed implausible. How could such a small child, faced with such an overwhelming medical problem, help us? It is one of lifeís great lessons that we can now appreciate how Faithís special qualities got us through. Her tranquility, her happiness, her boundless love and her bravery buoyed our spirits at every step and inspired us.

We were also able to cope with Faithís illness because of the many special people who were caring for our child (see the article Faith's Caregivers). Their knowledge, commitment and compassion gave us the strength and emotional support needed to meet Faith's challenges. But it is a tribute to Faith that she inspired her caregivers as well.

On September 21, 2001 we rushed Faith to New England Medical Center. There were indications of a possible infection, a situation that could be life threatening. As Faith lay in her bed, our primary oncology nurse, Mary Jo Gonzales, came to visit. Throughout Faithís illness, Mary Jo was one of the most important people in our life. She helped us through so many crises. As we talked about Faithís condition, I took a moment to thank Mary Jo for everything she had done for us. "You are our strength," I told her. "No," she replied, "Faith is my strength."

What should I be feeling?

Itís okay to think how awful this would be if it happened to your child. This is the starting point for you to understand how we feel.

Itís okay if you donít understand fully how we feel. In the past we have experienced the death of close family and friends. I watched my father die a most painful death from cancer in 1996. I was at his bedside at the time he died. I thought that I was now one of the enlightened ones, one of the survivors of tragedy. I thought that I understood pain and grief. Now I realize how clueless I was. Now I realize that no prior experience prepares you for the pain of losing a child.

Parents are supposed to die before their children. We all realize that one spouse will predecease the other. These experiences are painful and cause great grief in the survivors. But in this country in the 21st century the death of a 7-year-old child is uncommon, and tragic and shocking. Please just give us some respect, understanding and space to grieve. We will hope that you never have to walk this path.

What should I say?

Maybe itís easier to tell you what you shouldnít say:

Sometimes just being close by is the best comfort we could ask for. Donít feel you have to search for just the right words. If you are with us we know you care. "Iím so sorry", simple as it is, says it all.