I have had all kinds of reactions to Zoë, from her birth, to her diagnosis, to her passing. People have said, and done all kinds of strange and wondrous things. The one reaction that I never expected is the reaction to not react. The complete and utter absence of an utterance. Not one word. Not one acknowledgement. Nothing.
How can this be? How is it possible that someone you see on a frequent basis can be so devoid of emotion or lack the ability to say, “Congratulations,” upon her birth and , “I am sorry,” upon her death?
As time goes on it becomes harder and stranger for me to both accept, and understand this position. Perhaps now so much time has passed that it would be awkward, or strange?
The more I muse on why, or how someone could ignore, or just simply be unable to say anything to me I begin to justify for them. Perhaps they lack the fortitude to deal with a difficult topic? But why then could they not even acknowledge when Zoë was first born, even before she was sick? Perhaps they are uninterested in knowing me personally? Or maybe it is because I am the embodiment of their biggest fear?
Many people say to me, “If I were in your shoes I could not do what you have done.” I don’t believe this. When you are put into my position you will do whatever it is you have to do for your children. That is what being a parent is. Or is my view idealistic? Maybe I am wrong to think that everyone has the ability to handle what I did. Maybe I represent how people wish they would react…but in reality they know they would not have the strength?
I now look in awe at friends who are going through what I just did, and even I think, “I don’t know how they are doing it.” I am exhausted at just thinking about what my life was like the last few months. But I know that if Zoë were here today I would still be doing it. The crazy trips to the clinic, and the hospitalizations, and the difficult decision making.
Maybe it is the choices that I made for Zoë that are so off putting that I cannot be approached. Zeppo and I decided to treat Zoë with Chemotherapy, and surgery. Some parents would not have made this choice.
Perhaps it is because Zeppo and I decided to bring Zoë home, and to allow her a peaceful ending to her struggle, rather than to continue on a path with chemo, or experimental drugs.
Maybe it is simple not knowing. Not understanding what caused cancer in Zoë. Perhaps they think that it is something that Zeppo and I did that caused it. Maybe they fear that because it happened to us, it could rub off and happen to them?
Zeppo and I, although indescribably upset that Zoë was not cured, are happy with the treatment that she got. By giving her the chemo, and the surgery we got three more months than we would have otherwise. In that time she was kept as comfortable as we could get her. Her pain was managed, and she was loved, and thrived, and got to experience so much in such a short time.
Bringing Zoë home was not giving up. Her doctors gave us three very good options once she reached Stage 4 (terminal cancer). We could have continued on with a chemotherapy treatment, but it would not have cured her, and only extended her life by days, if that. Not to mention she would have suffered side effects on top of her body shutting down. There was an experimental drug offered, but even if we had chosen that choice she would have passed before the pharmacy and doctors would have been able to give it to her. If she had received it she could have had a whole host of unknown side effects, and it would not have been a cure. So we brought Zoë home.
There isn’t a good explanation for childhood cancer, what causes it. It is not something that I ate, or drank, or something that Zeppo did. It was not from our house, or where we live. Childhood cancer unlike adult cancer is almost always not caused by the environment around them. It was not caused by my genetics, or Zeppo’s, or a combination of our genetics. Zoë’s cancer was caused by a fluke, a simple cell dividing wrong. So no…it is not catchy.
If I am indeed the embodiment of this person’s biggest fears, well jeepers! What pressure. What a sad, and unwanted position for me to be in. Although I am suffering greatly I don’t want to cause stress or pressure to anyone else. I also don’t have the capacity to be worried about such a thing, to be honest. I have enough with my own mental health, and well being to be worried about. I cannot be concerned with the fears of others…sorry…I just can’t. So out of respect I will be silent. Keep away, and not confront. Because quite frankly I would not know where to begin anyway.
I don’t know what would cause this lack of empathy. This passive indifference. I can speculate all I want, but I don’t believe I will ever understand. I just chalk this up to yet another strange and wondrous reaction to Zoë. Yet another way people deal, or don't deal.
How can this be? How is it possible that someone you see on a frequent basis can be so devoid of emotion or lack the ability to say, “Congratulations,” upon her birth and , “I am sorry,” upon her death?
As time goes on it becomes harder and stranger for me to both accept, and understand this position. Perhaps now so much time has passed that it would be awkward, or strange?
The more I muse on why, or how someone could ignore, or just simply be unable to say anything to me I begin to justify for them. Perhaps they lack the fortitude to deal with a difficult topic? But why then could they not even acknowledge when Zoë was first born, even before she was sick? Perhaps they are uninterested in knowing me personally? Or maybe it is because I am the embodiment of their biggest fear?
Many people say to me, “If I were in your shoes I could not do what you have done.” I don’t believe this. When you are put into my position you will do whatever it is you have to do for your children. That is what being a parent is. Or is my view idealistic? Maybe I am wrong to think that everyone has the ability to handle what I did. Maybe I represent how people wish they would react…but in reality they know they would not have the strength?
I now look in awe at friends who are going through what I just did, and even I think, “I don’t know how they are doing it.” I am exhausted at just thinking about what my life was like the last few months. But I know that if Zoë were here today I would still be doing it. The crazy trips to the clinic, and the hospitalizations, and the difficult decision making.
Maybe it is the choices that I made for Zoë that are so off putting that I cannot be approached. Zeppo and I decided to treat Zoë with Chemotherapy, and surgery. Some parents would not have made this choice.
Perhaps it is because Zeppo and I decided to bring Zoë home, and to allow her a peaceful ending to her struggle, rather than to continue on a path with chemo, or experimental drugs.
Maybe it is simple not knowing. Not understanding what caused cancer in Zoë. Perhaps they think that it is something that Zeppo and I did that caused it. Maybe they fear that because it happened to us, it could rub off and happen to them?
Zeppo and I, although indescribably upset that Zoë was not cured, are happy with the treatment that she got. By giving her the chemo, and the surgery we got three more months than we would have otherwise. In that time she was kept as comfortable as we could get her. Her pain was managed, and she was loved, and thrived, and got to experience so much in such a short time.
Bringing Zoë home was not giving up. Her doctors gave us three very good options once she reached Stage 4 (terminal cancer). We could have continued on with a chemotherapy treatment, but it would not have cured her, and only extended her life by days, if that. Not to mention she would have suffered side effects on top of her body shutting down. There was an experimental drug offered, but even if we had chosen that choice she would have passed before the pharmacy and doctors would have been able to give it to her. If she had received it she could have had a whole host of unknown side effects, and it would not have been a cure. So we brought Zoë home.
There isn’t a good explanation for childhood cancer, what causes it. It is not something that I ate, or drank, or something that Zeppo did. It was not from our house, or where we live. Childhood cancer unlike adult cancer is almost always not caused by the environment around them. It was not caused by my genetics, or Zeppo’s, or a combination of our genetics. Zoë’s cancer was caused by a fluke, a simple cell dividing wrong. So no…it is not catchy.
If I am indeed the embodiment of this person’s biggest fears, well jeepers! What pressure. What a sad, and unwanted position for me to be in. Although I am suffering greatly I don’t want to cause stress or pressure to anyone else. I also don’t have the capacity to be worried about such a thing, to be honest. I have enough with my own mental health, and well being to be worried about. I cannot be concerned with the fears of others…sorry…I just can’t. So out of respect I will be silent. Keep away, and not confront. Because quite frankly I would not know where to begin anyway.
I don’t know what would cause this lack of empathy. This passive indifference. I can speculate all I want, but I don’t believe I will ever understand. I just chalk this up to yet another strange and wondrous reaction to Zoë. Yet another way people deal, or don't deal.
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