On October 22, 2011 at 1:08 in the morning Zoë Faye Young was born into the world from a womb with out water. She was immediatly whisked away from her parents to be stuck with needles and have IV's placed for antibiotics. She spent the next month with colic, keeping us up late, and forever searching for a way to make her happy.
On December 26, 2011 we found out that for several days, or weeks a cancer had taken over her body. And she began her long night. Her long fight with herself. Because ultimately what cancer is, is your own body turning on you. It is one cell that decides it wants to copy wrong, then copy over, and over, and over, and over....
Zoë had line after line, after stick, after arterial line, after PICC line, and broviac placed. She has had more dressings, and tape, and nephrostomy tubes, and catheters, and surgeries, and breathing tubes, and pain. More pain than most could bear. But she has handled every step with a grace, and determination that is astounding. It is as if that first IV placed at birth was a way for her to know what her life would be like. As if all the pain of colic was a way for her to know what belly pains would come. Like everything was preparing her for the next big thing.
Someone posted that Zoë is a very old soul. I did not think of it that way until now, but I agree. When I was in college a very dear friend and I would often discuss the age of people, and how we are all older or younger than our actual years. She is a very old soul, and I was described by her as a soul that may have had a few trips back, but I am still very young. Well...Zoë is clearly an old soul. The knowlege that is behind her eyes, the knowing that she has always had. The ability for her to speak to me with out words. The way in which in the face of pure physical horror she is able to not only bear it, but thrive. To grow. To learn. To adapt. To wake up everyday and stretch out arms up, and legs out, and smile. That ability must only come because she at one time must have lived a beautiful life.
People keep telling me that she is here for a reason. Yes. Yes, she is. She is the face of childhood cancer. She is the face of rare cancer. She is letting people who otherwise never gave a thought to cancer research a reason to care for a cure. I have friends who never thought this kind of cancer ever happened. Or "who knew cancer got 'smart' and would stop being affected by chemo." Zoë is giving the world a wake up call. She is saying LOOK! LOOK AT ME. LOOK AT HOW BEAUTIFUL I AM. LOOK AT HOW FUCKED UP IT IS TO HAVE CANCER! DO SOMETHING! DO SOMETHING DAMN IT!
I could write my blog....thousands of words, and not have one person listen. But I post a picture of Zoë and the world reacts. People around the world are crying and pleading to save a little girl they have never met. I did not do this for her, my husband did not do this....this reaction to our situation is not because of us. It is purely and solely because of Zoë.
My mother always remarks about how Zoë has the ability to attract people to her. She is like a beacon, she has a light inside of her that is so bright that it shines brighter than the sun. People caught in her rays are captivated. They are mesmerized by her...and that is all her. It is breath taking, It makes me unable to describe just how awed I am by her.
My husband and I perhaps being in her light so long are blinded. We are unable to see anything but her.
I believe that every person who crosses our path shapes us. They are there to learn a lesson. When you start to date in life, you get your first boyfriend, and you love, and you breakup. And there is a lesson in that breakup. Then you date again, and you hopefully using what you learned before do not make the same mistakes again. Then you breakup for other reasons, and you learn another lesson, and you go out and you find someone and you date again. The goal being that when all of your lessons are learned hopefully you will find the right person for you.
Lots of people say after a breakup, "I wish I never met _______." I have never thought that a day in my life. Everyone I have loved, everyone I have been friends with, everyone who I interact with even on the most basic of levels is important. I have always tried to learn from those relationships, and I hope that where I have failed, and where I have hurt someone in the past, I hope I have learned and I have not done the same things to someone else.
Well Zoë in her 5 plus months has taught me more than the all of the lessons I have learned from all of the people I have ever met in my entire life.
She has taught me not to be afraid of pain when I bore her. She has taught me how to love more deeply than I ever knew. She has opened my eyes to a world that is so beautiful. She has shown me that people are giving, and can be selfless even in such a selfish society. She has taught me that I have more energy than I knew I had. She has shown me not to be afraid to die.
I have always been petrified to die. Sometimes late night I would lay in bed and just think, "what if this was it." I would cry, and think I am so not ready, I have so much I need to do. Almost always on my list of what I needed was to be a mother. And now I am a mother, I will always be a mother.
I still fear death, because now I have to live for two. Being a parent is exhausting work because you are living for yourself, and your child. Everything you do in a day you have to do for yourself and your child. Or your child, then yourself if you have the chance. You feed them, and clothe them, and wash them....and it is exhausting. I have been living for two since before I conceived Zoë. It has not always been easy. I have had my weak moments where I would have that second bowl of ice cream rather than a salad and a well balanced meal. But all in all I was living for her...now I will continue on living for her.
I told my brother that when Zoë was placed into a remission status that I quite frankly wanted to get so fucked up that I would have to be mopped up off the floor. Well the other day I told him that now...now all I want is to live every moment to its fullest. To not miss a second of my life. Even if it means suffering through what I am I need to do it with a clear head, and open eyes. I cannot look back on Zoë's last days and not remember every second of her.
Maybe that is why I cannot sleep. I have barely slept for days. But I have more energy than I know what to do with. My mother suggested a sleeping pill. Well maybe there will be a time someday for that...but for now I just want to keep my eyes open.
Zeppo and I have decided that along with a traditional funeral we will be sitting our own version of Shiva. This for those who don't know is a Jewish tradition of gathering for seven days with family to mourn. After the seven days the family goes for a walk to signify that they are reentering the world and that they are no longer in mourning.
I decided I need this. When my grandmother, my Memere passed away it was in my senior year, second semester of college. I drove 85-95 miles an hour the night of her wake from Philadelphia to Pascoag, RI. I had only an hour or so before we left the funeral home, and then had the funeral the next day. The following day I drove as slowly as I could back to school, and immediately had to begin class work. Thus preventing me the ability to really mourn her loss. Instead for years, and years, and years I could not speak of my Memere with out crying. I could not cope with my loss, and although I make my best attempts to visit her grave I still feel like I did not give her the time in my heart and mind that I needed to give her.
I will not have this happen with Zoë. I know that I will need extended time to mourn, and I need a way to signify that it is OK to reenter the world. Shiva will help me do all of that.
We will post, or have someone post the calling hours for Shiva and we open our home for a number of days to be determined, to those who need to come and mourn with us. There are some "rules" or ways about Shiva that you can read about on Wikipedia, or other online sites, but basically as it has been explained to me is the following. When you arrive to our home you do not have to greet us. We may not want to greet you, or we may want to greet you. It is up to us to approach you. Our home is your home during this time. So be comfortable in it. You do not need to ask our permission for anything. You also do not need to ask us what we need. We need you to do what you need to do for you.
Everyone mourn is their own way. Some need to talk, some need silence. Seek out those like yourself and morn together. Some need to do "something". If you need to cook, cook. If you need to clean, clean. If you need to run, run. Do for you what you need to do, and in doing so you will be doing what we need you to do, for us. Just please don't ask us what we need. We will do what we need to do. We will ask when we need something.
Yesterday was one of the most beautiful days we have had with Zoë. The gift of going out side with her after being in this hospital for days was wonderful. I as most of you know am not a baseball fan. But by going to Fenway I got to do something with Zoë that I needed.
As you all know Zoë loves her balloons. From the first one that Louisa gave her, to all the other ones she collected. We don't have her original balloons with us, but we were given some from the nurses on 6 East, and I went and bought my baby a ridiculous amount of balloons, and together Zeppo, and I watched as Zoë, with much hesitation, and encouragement to let go....let go of her balloons from left field of Fenway Park. I watched until I could no longer see them, then asked in what direction they went. Well they went in the direction of Rhode Island. Zeppo and my home towns. It made me cry. We attached a note, and maybe someone someday will find it.
I wish I could launch a thousand balloons...a million balloons. So I would like when the time is right to have a balloon launch for those of you who are unable to be here with us, and who feel the need to do something. We will do a balloon launch at her funeral, and we will give a time, and we would like you to find a beautiful place with wide clear sky to let a balloon go with a note telling Zoë's story, and a link to her website for people if they find the note to let us know that they have read, and learned about our baby. Please hand write your note, please place it in a plastic bag with a zipper to protect it from the weather, and attach it to the balloon with care.
Just as I finished writing that last paragraph Zoë woke up, and ate. We fed her, and now she is playing with her tubey-toy. We told her all about the balloon launch, and she grunted in approval. It made us laugh, it made us tear. But it will not make me cry...because I still refuse to cry in front of her.
All for now. Off to play with my baby!
On December 26, 2011 we found out that for several days, or weeks a cancer had taken over her body. And she began her long night. Her long fight with herself. Because ultimately what cancer is, is your own body turning on you. It is one cell that decides it wants to copy wrong, then copy over, and over, and over, and over....
Zoë had line after line, after stick, after arterial line, after PICC line, and broviac placed. She has had more dressings, and tape, and nephrostomy tubes, and catheters, and surgeries, and breathing tubes, and pain. More pain than most could bear. But she has handled every step with a grace, and determination that is astounding. It is as if that first IV placed at birth was a way for her to know what her life would be like. As if all the pain of colic was a way for her to know what belly pains would come. Like everything was preparing her for the next big thing.
Someone posted that Zoë is a very old soul. I did not think of it that way until now, but I agree. When I was in college a very dear friend and I would often discuss the age of people, and how we are all older or younger than our actual years. She is a very old soul, and I was described by her as a soul that may have had a few trips back, but I am still very young. Well...Zoë is clearly an old soul. The knowlege that is behind her eyes, the knowing that she has always had. The ability for her to speak to me with out words. The way in which in the face of pure physical horror she is able to not only bear it, but thrive. To grow. To learn. To adapt. To wake up everyday and stretch out arms up, and legs out, and smile. That ability must only come because she at one time must have lived a beautiful life.
People keep telling me that she is here for a reason. Yes. Yes, she is. She is the face of childhood cancer. She is the face of rare cancer. She is letting people who otherwise never gave a thought to cancer research a reason to care for a cure. I have friends who never thought this kind of cancer ever happened. Or "who knew cancer got 'smart' and would stop being affected by chemo." Zoë is giving the world a wake up call. She is saying LOOK! LOOK AT ME. LOOK AT HOW BEAUTIFUL I AM. LOOK AT HOW FUCKED UP IT IS TO HAVE CANCER! DO SOMETHING! DO SOMETHING DAMN IT!
I could write my blog....thousands of words, and not have one person listen. But I post a picture of Zoë and the world reacts. People around the world are crying and pleading to save a little girl they have never met. I did not do this for her, my husband did not do this....this reaction to our situation is not because of us. It is purely and solely because of Zoë.
My mother always remarks about how Zoë has the ability to attract people to her. She is like a beacon, she has a light inside of her that is so bright that it shines brighter than the sun. People caught in her rays are captivated. They are mesmerized by her...and that is all her. It is breath taking, It makes me unable to describe just how awed I am by her.
My husband and I perhaps being in her light so long are blinded. We are unable to see anything but her.
I believe that every person who crosses our path shapes us. They are there to learn a lesson. When you start to date in life, you get your first boyfriend, and you love, and you breakup. And there is a lesson in that breakup. Then you date again, and you hopefully using what you learned before do not make the same mistakes again. Then you breakup for other reasons, and you learn another lesson, and you go out and you find someone and you date again. The goal being that when all of your lessons are learned hopefully you will find the right person for you.
Lots of people say after a breakup, "I wish I never met _______." I have never thought that a day in my life. Everyone I have loved, everyone I have been friends with, everyone who I interact with even on the most basic of levels is important. I have always tried to learn from those relationships, and I hope that where I have failed, and where I have hurt someone in the past, I hope I have learned and I have not done the same things to someone else.
Well Zoë in her 5 plus months has taught me more than the all of the lessons I have learned from all of the people I have ever met in my entire life.
She has taught me not to be afraid of pain when I bore her. She has taught me how to love more deeply than I ever knew. She has opened my eyes to a world that is so beautiful. She has shown me that people are giving, and can be selfless even in such a selfish society. She has taught me that I have more energy than I knew I had. She has shown me not to be afraid to die.
I have always been petrified to die. Sometimes late night I would lay in bed and just think, "what if this was it." I would cry, and think I am so not ready, I have so much I need to do. Almost always on my list of what I needed was to be a mother. And now I am a mother, I will always be a mother.
I still fear death, because now I have to live for two. Being a parent is exhausting work because you are living for yourself, and your child. Everything you do in a day you have to do for yourself and your child. Or your child, then yourself if you have the chance. You feed them, and clothe them, and wash them....and it is exhausting. I have been living for two since before I conceived Zoë. It has not always been easy. I have had my weak moments where I would have that second bowl of ice cream rather than a salad and a well balanced meal. But all in all I was living for her...now I will continue on living for her.
I told my brother that when Zoë was placed into a remission status that I quite frankly wanted to get so fucked up that I would have to be mopped up off the floor. Well the other day I told him that now...now all I want is to live every moment to its fullest. To not miss a second of my life. Even if it means suffering through what I am I need to do it with a clear head, and open eyes. I cannot look back on Zoë's last days and not remember every second of her.
Maybe that is why I cannot sleep. I have barely slept for days. But I have more energy than I know what to do with. My mother suggested a sleeping pill. Well maybe there will be a time someday for that...but for now I just want to keep my eyes open.
Zeppo and I have decided that along with a traditional funeral we will be sitting our own version of Shiva. This for those who don't know is a Jewish tradition of gathering for seven days with family to mourn. After the seven days the family goes for a walk to signify that they are reentering the world and that they are no longer in mourning.
I decided I need this. When my grandmother, my Memere passed away it was in my senior year, second semester of college. I drove 85-95 miles an hour the night of her wake from Philadelphia to Pascoag, RI. I had only an hour or so before we left the funeral home, and then had the funeral the next day. The following day I drove as slowly as I could back to school, and immediately had to begin class work. Thus preventing me the ability to really mourn her loss. Instead for years, and years, and years I could not speak of my Memere with out crying. I could not cope with my loss, and although I make my best attempts to visit her grave I still feel like I did not give her the time in my heart and mind that I needed to give her.
I will not have this happen with Zoë. I know that I will need extended time to mourn, and I need a way to signify that it is OK to reenter the world. Shiva will help me do all of that.
We will post, or have someone post the calling hours for Shiva and we open our home for a number of days to be determined, to those who need to come and mourn with us. There are some "rules" or ways about Shiva that you can read about on Wikipedia, or other online sites, but basically as it has been explained to me is the following. When you arrive to our home you do not have to greet us. We may not want to greet you, or we may want to greet you. It is up to us to approach you. Our home is your home during this time. So be comfortable in it. You do not need to ask our permission for anything. You also do not need to ask us what we need. We need you to do what you need to do for you.
Everyone mourn is their own way. Some need to talk, some need silence. Seek out those like yourself and morn together. Some need to do "something". If you need to cook, cook. If you need to clean, clean. If you need to run, run. Do for you what you need to do, and in doing so you will be doing what we need you to do, for us. Just please don't ask us what we need. We will do what we need to do. We will ask when we need something.
Yesterday was one of the most beautiful days we have had with Zoë. The gift of going out side with her after being in this hospital for days was wonderful. I as most of you know am not a baseball fan. But by going to Fenway I got to do something with Zoë that I needed.
As you all know Zoë loves her balloons. From the first one that Louisa gave her, to all the other ones she collected. We don't have her original balloons with us, but we were given some from the nurses on 6 East, and I went and bought my baby a ridiculous amount of balloons, and together Zeppo, and I watched as Zoë, with much hesitation, and encouragement to let go....let go of her balloons from left field of Fenway Park. I watched until I could no longer see them, then asked in what direction they went. Well they went in the direction of Rhode Island. Zeppo and my home towns. It made me cry. We attached a note, and maybe someone someday will find it.
I wish I could launch a thousand balloons...a million balloons. So I would like when the time is right to have a balloon launch for those of you who are unable to be here with us, and who feel the need to do something. We will do a balloon launch at her funeral, and we will give a time, and we would like you to find a beautiful place with wide clear sky to let a balloon go with a note telling Zoë's story, and a link to her website for people if they find the note to let us know that they have read, and learned about our baby. Please hand write your note, please place it in a plastic bag with a zipper to protect it from the weather, and attach it to the balloon with care.
Just as I finished writing that last paragraph Zoë woke up, and ate. We fed her, and now she is playing with her tubey-toy. We told her all about the balloon launch, and she grunted in approval. It made us laugh, it made us tear. But it will not make me cry...because I still refuse to cry in front of her.
All for now. Off to play with my baby!
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