A Foothold

About a year ago I joined an online website for parents of children who had died of cancer. The specificity of how Maxx died has assumed, over time, an increasingly important place in the panorama of my grief. Parents of children who have died of a terminal illness experience a particularity of pain devastating to one's identity. We watched our children die. We watched them breathe their last. Some in our arms. Others, like my son, intubated in ICU. We could do so little. Ultimately, we could do nothing. There is no way to fully communicate the horror of this passage through hell to those who have not themselves been pulled kicking and screaming into the vortex. No one wants to hear, nor do we want to speak of these tortures as if we are describing the ingredients and directions for making a pot roast. It is too large to bracket with words. Chemo, surgeries, bone marrow biopsies, diarrhea, bruising, rashes, nausea, needles, tubes, Pet scans. Blood. Frantic trips to ER for fevers. The indignities suffered. The body as it sickens, especially in a young person, a child whose very nature is a joyous explosion toward growth and life, is a dreadful dissolution to observe. The child born. The child dying. The parents watching. It is unimaginable, even as we were witnesses to its occurrence.

Most of the parents on the site are at least 20 years younger than myself. Their children, when they died, were often between the ages of 2 and 10. Most, not all. Some, like myself lost adolescents, or young adults in their late teens and early twenties. The age differences in a child who dies from cancer are not insignificant, certainly not in terms of understanding what is happening, but the experience of literally watching one's child fail and die from this devastating disease brands one with a livid, ropey, aching coil of tissue that constricts the heart and mind.

Many of the women who post on this site are attempting desperately to regain a foothold in their lives and there are many who appear to manage this not without difficulty, but overall fairly well, particularly when there are younger remaining siblings. There seems to be a point at which a bereaved mother has determined that she must live for her family, if not for herself. And while this feels right (not one of us would willingly absent ourselves from our remaining children's lives) I also think there is not a small element of self-sacrifice at work here. An expedient way of sidestepping the central task at hand--what do we do, how do we live with this grief in a way that does not invoke and accept the dogmatic obligations we, as women, believe is our collective destiny---to care for others?


This is a large and complicated subject and to write about this requires care and a delicacy that does not lend itself to either rapid thought or composition. I am not finished with this process, but I want to say this much for now.


I no longer think much about fighting for my life in terms of anyone around me--either my husband or my daughter. I tried hard to believe that my existence had some meaning either for them, or in this world, that to end my life would "destroy" them. And though this was probably certainly true, for whatever reasons, (perhaps my pain was too all consuming, too "selfish") it never took. Living for them felt like just another tiresome extension of what I had been doing all my life in some fashion ---living for and through someone else--seeking approval, validation, acceptance, love. "Don't hurt yourself because you will hurt them and they've been hurt enough."

Granted. But the brutal truth remains that I was so demolished, so truncated emotionally that eventually I found myself unable to respond to their pain, or comprehend how they were managing to survive. This journey, as I have said, is treacherous and not all change is "good." In their anguish over losing Maxx, neither my husband nor my daughter turned to me, nor did they want, need, ever ask for, or welcome my efforts to support them, sporadic though they were. I'm not certain that I could have done anything to help them in any case, probably not, but I mention this because my initial and primary reflex was to turn away from my own agony in a frantic effort to comfort another, albeit another loved one.

When I realized that neither one of them needed me in the way I felt they should, I was not only deeply hurt, but felt their withdrawal as abandonment, and to be honest, it was. We each in our own way was forced to abandon the other if only temporarily in an effort to stay alive. I couldn't understand that then and even today, have trouble accepting what happened. Ultimately, they are processing their grief in a manner entirely inconsistent with my own. Understandably, (I knew this then, and I know it now) neither was able to step into my particular circle of hell. And why would they?

Here is what I know about myself today. My capacity to love as deeply as I did is not the same. I have not saved myself to the extent that I'm still here because I love my remaining family. Of course, I love them. That has never been in doubt. But I do know that my survival thus far is not because loving them ensures my continued existence. Nor am I willing to admit it is because I love myself. I am here because I am here. I can't say why.