I have new revelations nearly weekly regarding my experience being Zoë’s mom, being the mother of a child with cancer, and being a parent who lost a child. These revelations are often shocking to me at first, then I think about them for a while, and I realize how normal this must be. It is so much easier sometimes to see what has happened from some distance.
My revelation about Zoë’s size, and health (revisited): Hearing that my child had cancer should have cued me into the fact that she was in fact, not healthy. But for whatever reason I somehow managed for a long time to disconnect her overall development (growth, or lack thereof), from her medical condition. It is only now looking at how plump and healthy Esmée is that I see just how sick Zoë was (especially when comparing photographs). This is not a new revelation (and clearly it is something I am still struggling with)…but what is new is that now I feel like I have some form of sick and twisted power to see illness in other children. As children are added to Facebook with messages for prayers and hopes, I cannot help but look at these pictures of smiling children afflicted with a myriad of illnesses and not just see a beautiful child, but to see a very gravely ill child.
These children stick out with common features. Their smallness, their wise eyes, their bony thin fingers and wrists clutching at their toys. I can barely look at their images because I fear that becoming attached to a child with a grave illness will only lead me to sadness. It is almost as if I no longer believe that children can get better from cancer, or heterotaxy syndrome, or a plethora of other diseases that primarily affect children.
To coincide with this I also realized how little discussion there was regarding the height/weight growth chart for Zoë. Something that Zeppo and I gleefully make bets about regarding Esmée’s development was barely hinted at while at Children’s Hospital with Zoë. I can only remember one time where a chart was brought up on a computer screen, and the doctor noted that Zoë was not really up on the chart…but that it was alright because of her condition.
Were the doctors purposely not discussing the fact that Zoë was not on the growth chart because they knew that her cancer was so insidious that it would probably take her life? Did they just want to spare us the worry and concern because she was not growing?
In many ways I am so grateful that this was not a focus during her life, and treatment. I don’t think that I was held in the dark, but I am glad that I was not stressed about it. But at the same time I feel so sad that it is only a year after her passing that I realize how the doctors were sheltering us a bit. It is sad that we needed this sheltering…yet I know deep down the doctors made the right call. We really did need that sheltering.
I am sure, in fact POSITIVE, that if Zeppo or I asked about any of this information the doctors would have done their very best to inform us, and I don’t think that they withheld any information from us during any of the steps in the care for Zoë. I want to be clear that I just think that they were careful to not stress, or bring up topics like her height/weight unless they had to.
My revelation about how I handled those moments after Zoë passing away: I was listening to an episode of The Moth Podcast this past weekend, in which Sebastian Junger spoke about his friend and fellow photojournalist’s death. He said, “…and I felt nothing. I was hollow again…completely hollow, I felt bad that I didn’t feel bad. I was in shock, I mean, I realized later I was in shock, and um, you know it spares you for a little while the things you are going to have to feel later.”
All I could think was, “Wow.” I know that feeling. I know that complete hollow, non-feeling feeling. That feeling where you know you should feel something; that you are pleading with yourself to feel anything, but there is just nothing. And then….it rushes in. The pain, the intense grief. The complete horror. It was shock! I was in shock! How is it over a year later I am just realizing that I was in shock?
Upon reflecting on shock. It is just as Mr. Junger says, it spares you for a little while. I am grateful for having been in shock, because without that time of displaced emotions I would not have been able to function for myself, or for Zeppo.
This revelation has also helped me come to terms with those days where I was in shock, because for a long time I thought perhaps I was being robotic, or cold, or somehow not feeling what I should have been feeling in that moment. But now I realize that I was feeling exactly what I should have been feeling in that very moment.
If you look up shock you can find many definitions. The state of circulatory shock and emotional shock are remarkably the same. When the body is experiencing circulatory shock the body is deprived of enough oxygen to sustain life. During emotional shock the body is flooded with adrenaline, and noradrenaline, and the person is emotional constricted. The field of consciousness is narrowed, and it becomes harder to comprehend what is going on. Confusion, impaired judgment, detachment, and depression are all common. Amnesia either complete, or partial can also happen. The symptoms can appear in a matter of minutes, and can last for days.
Yet again I am reminded how amazing our bodies are. How our brains sensing our inability to process what we are seeing, hearing, experiencing physically and emotionally, will just flood us with hormones that will protect us. That it will allow us to even forget.
I have not forgotten one second of those last days, or those days just after Zoë’s passing, but I do know that my body did its best to protect me. It allowed me to drift in a sea of adrenaline, and noradrenaline. It cushioned the blow, and as it let me down into my grief it did its best to protect me from myself.
My revelation about revelations: I am truly a believer that I am not the first person to experience anything. Nearly every aspect of my life has been lived before by hundreds, thousands, tens of thousands of women before me. What helps me is using others experiences to understand my own. Like that of Mr. Junger. I am forever seeking guidance to understand my life, and my experiences. To comfort myself? Perhaps. But it is this curiosity to know more about myself that I hope in turn can help others. I hope that my honesty, and my acceptance to feel then explain my feelings will help others who have not had my experiences, to understand not only me a bit better, but those around them.
My revelation about Zoë’s size, and health (revisited): Hearing that my child had cancer should have cued me into the fact that she was in fact, not healthy. But for whatever reason I somehow managed for a long time to disconnect her overall development (growth, or lack thereof), from her medical condition. It is only now looking at how plump and healthy Esmée is that I see just how sick Zoë was (especially when comparing photographs). This is not a new revelation (and clearly it is something I am still struggling with)…but what is new is that now I feel like I have some form of sick and twisted power to see illness in other children. As children are added to Facebook with messages for prayers and hopes, I cannot help but look at these pictures of smiling children afflicted with a myriad of illnesses and not just see a beautiful child, but to see a very gravely ill child.
These children stick out with common features. Their smallness, their wise eyes, their bony thin fingers and wrists clutching at their toys. I can barely look at their images because I fear that becoming attached to a child with a grave illness will only lead me to sadness. It is almost as if I no longer believe that children can get better from cancer, or heterotaxy syndrome, or a plethora of other diseases that primarily affect children.
To coincide with this I also realized how little discussion there was regarding the height/weight growth chart for Zoë. Something that Zeppo and I gleefully make bets about regarding Esmée’s development was barely hinted at while at Children’s Hospital with Zoë. I can only remember one time where a chart was brought up on a computer screen, and the doctor noted that Zoë was not really up on the chart…but that it was alright because of her condition.
Were the doctors purposely not discussing the fact that Zoë was not on the growth chart because they knew that her cancer was so insidious that it would probably take her life? Did they just want to spare us the worry and concern because she was not growing?
In many ways I am so grateful that this was not a focus during her life, and treatment. I don’t think that I was held in the dark, but I am glad that I was not stressed about it. But at the same time I feel so sad that it is only a year after her passing that I realize how the doctors were sheltering us a bit. It is sad that we needed this sheltering…yet I know deep down the doctors made the right call. We really did need that sheltering.
I am sure, in fact POSITIVE, that if Zeppo or I asked about any of this information the doctors would have done their very best to inform us, and I don’t think that they withheld any information from us during any of the steps in the care for Zoë. I want to be clear that I just think that they were careful to not stress, or bring up topics like her height/weight unless they had to.
My revelation about how I handled those moments after Zoë passing away: I was listening to an episode of The Moth Podcast this past weekend, in which Sebastian Junger spoke about his friend and fellow photojournalist’s death. He said, “…and I felt nothing. I was hollow again…completely hollow, I felt bad that I didn’t feel bad. I was in shock, I mean, I realized later I was in shock, and um, you know it spares you for a little while the things you are going to have to feel later.”
All I could think was, “Wow.” I know that feeling. I know that complete hollow, non-feeling feeling. That feeling where you know you should feel something; that you are pleading with yourself to feel anything, but there is just nothing. And then….it rushes in. The pain, the intense grief. The complete horror. It was shock! I was in shock! How is it over a year later I am just realizing that I was in shock?
Upon reflecting on shock. It is just as Mr. Junger says, it spares you for a little while. I am grateful for having been in shock, because without that time of displaced emotions I would not have been able to function for myself, or for Zeppo.
This revelation has also helped me come to terms with those days where I was in shock, because for a long time I thought perhaps I was being robotic, or cold, or somehow not feeling what I should have been feeling in that moment. But now I realize that I was feeling exactly what I should have been feeling in that very moment.
If you look up shock you can find many definitions. The state of circulatory shock and emotional shock are remarkably the same. When the body is experiencing circulatory shock the body is deprived of enough oxygen to sustain life. During emotional shock the body is flooded with adrenaline, and noradrenaline, and the person is emotional constricted. The field of consciousness is narrowed, and it becomes harder to comprehend what is going on. Confusion, impaired judgment, detachment, and depression are all common. Amnesia either complete, or partial can also happen. The symptoms can appear in a matter of minutes, and can last for days.
Yet again I am reminded how amazing our bodies are. How our brains sensing our inability to process what we are seeing, hearing, experiencing physically and emotionally, will just flood us with hormones that will protect us. That it will allow us to even forget.
I have not forgotten one second of those last days, or those days just after Zoë’s passing, but I do know that my body did its best to protect me. It allowed me to drift in a sea of adrenaline, and noradrenaline. It cushioned the blow, and as it let me down into my grief it did its best to protect me from myself.
My revelation about revelations: I am truly a believer that I am not the first person to experience anything. Nearly every aspect of my life has been lived before by hundreds, thousands, tens of thousands of women before me. What helps me is using others experiences to understand my own. Like that of Mr. Junger. I am forever seeking guidance to understand my life, and my experiences. To comfort myself? Perhaps. But it is this curiosity to know more about myself that I hope in turn can help others. I hope that my honesty, and my acceptance to feel then explain my feelings will help others who have not had my experiences, to understand not only me a bit better, but those around them.
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