I've never been so excited to get a book. The chase is so exhilarating. I called the library to make sure the book wasn't in transit. I'm counting down to leave from work to go to the library!
Oh... so I see no one has actually posted any thoughts about the first couple of chapters. And I just spent the last 20 minutes typing up mine :P
After reading the first two chapters, I had a lot to say which I think I’ll save till the end when we discuss the book.
I’ve got mixed feelings about the first two chapters. First of all it’s only the start of the book so I can’t jump to judging yet. I felt she was all over the place, which I normally don’t like it, but here I did. It was raw and only the natural way to express thoughts and emotions when a parent learns such news. When we are angry we some of our thoughts are irrational and all over the place, but as you come to the end of the 2nd chapter it all comes into place and makes sense.
I can’t even imagine how difficult it must have been for her to write all of this but like she pointed out many find relief in their pain be expressing in through writing.
I’m hoping that she’ll talk more about how things continued after the diagnosis. Rather than just expressing emotions. How long did he live for till he passed away? Where did he pass away? Was he alone, or in his parent’s arms? How has she found comfort through this writing process and does she have plans to have more children?
My neighbors had a daughter who was born with a condition in which all her motor skills would never function. So she would in a wheelchair all her life, she would have to be fed, bathed, clothed, and she would never talk. Her parents decided to never have kids after her. She lived till she was about 16 years old. It saddens me that despite given a child with no chance of a future why would you limit yourself to no longer having more children? Yes, I can understand the fear of possibly having another child just the same, but there is also the possibility that you won’t. If you made it your commitment to take of your physically disabled child until they die, which is a lot more work and effort, then why not continue to commit to raise a child who isn’t. Just my thoughts.
I ended up buying an eBook. I was debating on purchasing a hard copy then reselling it, but then I would have to go through that headache. I started to wonder what if it never got sold or got sold for too cheap. I would then be better of buying the eBook. This is the first time I've bought an eBook.
I agree with Sana, that the book starts up with a whirlwind of emotion. As the reader, you really get to walkthrough the author’s mind and experience the initial shock, and eventual realization and acceptance of the situation.
A question for the two young mothers in our book club: were you ever wrestling with fear that your child would not born “healthy” while you were pregnant? How did you overcome these moments of anxiety?
I’m in a stage of my life, where I’m constantly thinking about growing the family, but that always goes hand in hand with many “what if” scenarios. In the end, I know that everything is already written, and I have no control over what is meant to be, and to be grateful for all the blessings I’ve been endowed with, and just deal with whatever happens in the most pragmatic way possible. How do people find the strength to deal with the grief and sadness though?
The author and her family seem to have it right though. They want to let him experience the joys of world before his last breaths.
To Sana’s point regarding her neighbours not having a second child, I’m sure we don’t have the entire picture as to why they limited themselves to only one child. I’m trying to put myself in their shoes and one possibility is that they felt that while their daughter was alive, they wouldn’t be able to divide their attention and provide her with the best care possible, if they had other children.
There was one line in particular that caught my attention: “[…] Ronan taught me that children do not exist to honour their parents; their parents exist to honour them.” (page 20). Thoughts?
In the end, it’s always disheartening to hear when parents outlive their children.
Sana, and Sara, I really liked reading your comments. Thanks for sharing them. Although, having a baby gives me plenty of time to read, it unfortunately doesn't give me the opportunity to sit down and actually express my thoughts in a coherent manner. I will inshAllah share my thoughts soon. Until then, I am really enjoying our discussion.
Sara, that line stood out for me as well, except at the time I was still new to using Kindle and didn't know you could mark notes and highlight while reading. I don't know, I'm read this line out a few times to myself and I'm thinking she's trying to say that we exist to honor our children as in we are proud parents? My son crosses a milestone, such as today he put two words together. He is not honoring me, because he doesn't know or understand that yet. But I am honoring him but praising him, by mentioning his achievement to everyone else and how proud I am of him. Also, making myself feel proud that after months of trying to get him to talk he's finally getting somewhere, I think about this few years down the road, inshaAllah when he's passed a grade or an academic institution and he's up there holding his diploma, I don't need or want him to honor me or thank me, because this is what I am meant to do. I exist to help him achieve to let him know that he can do anything he puts his mind to. I dont simply exist as a paremt to take care of him, but to let him live further than his potential. I dont know if that makes sense. but it does to me.
Zainab, I'm the same situation as you. My son is at an age where he's constantly craving my attention and my phone - which I'm using to read the book. Taht I've been really out of my reading and writing skills, so this book club will really help me improve my skills.
Sara to answer you question. I wanted to save this for when we discuss the book at the end. But I am eager to share my thoughts, so I'm just going to tell you.
I remember when I got pregnant and all throughout my pregnancy everyone would ask me if I plan to find out, have found out the gender of the baby. My response was that my husband and I had agreed on letting it be a surprise. I was then asked what I felt the gender would be, I would tell them that I honestly didn't know nor does it matter to me which gender it is all I honestly hope for that the baby is and remains in good health. I admit to praying madly not asking but begging Allah to keep my child clear of all terminal illness or serious health and birth defects.
Fear was always constant. There was a chance because before me my mother gave birth to a girl who was down syndrome. Doctors said she wouldn't live long because certain organs weren't fully developed. My parents said at the time they only prayed that Allah would do whatever is best for their daughter, whatever would be easy for everyone. And so a couple of hours after being born, Surraiya (that was her name, not sure about the spelling) died. My parents said she was unbelievably beautiful.
During delivery, while I was getting ready to push, there was a frightening moment where the nurse warned me that there would be a chance that my child would come out not crying and if so they would not give him to me immediately. They would have to insert a what appeared to be a relatively long IV tube down the baby's throat. I wanted to cry, but there was no time to cry because it was time to push. But I was once again praying asking Allah to keep my baby healthy. Always and forever.
Even now, everyday, when I put my son to sleep, I pray to Allah to always protect him for serious harm and illnesses. Of course, we can't control everything, I do try to think and pray that if God-forbid something is to happen that I'm strong through it all. I try my best to enjoy every day and every moment with my son not only for the sake that he is my son, but because of an amazing blessing he is in my life. \
I'm sorry for errors, mistakes, i wanted to take time to proof read, i was honeslty just typing out my thougths and feelings but i dont have time to proof read I need to wake my son up from his nap.
Sana, I can so relate to your pregnancy and delivery experiences.
To answer Sara's question, yes I was also very scared about the whole prospect of trying to have a baby, getting pregnant, and then delivery. When I first found out I was pregnant I was so scared to tell anyone. I didn't tell any of my friends I was pregnant until after the first trimester. And, every month when I went to the doctor for my pre-natal visits, I would wait anxiously to hear my baby's heartbeat, scared that it might not be there.
I was also scared about the labour. My mom had a stillbirth, so I was always thinking about that, especially when they couldn't hear Sophia's heartbeat when she first came into this world.
I had the genetic counseling during my first trimester. Again, I was scared during that first ultrasound when the check for Down Syndrome. I am doing my master's in intellectual disabilities, so throughout my pregnancy and even now (sometimes) I am constantly checking for signs of autism or even Tourette Syndrome.
Chapter 1 "This is a love story, which, like all great love stories is ultimately of a story of loss." I found this line heartbreaking, but also very self-actualized.
I read 'We Need New Names', which is a book about a girl's journey out of impoverished circumstances in Zimbabwe to America, right before starting this book. So when I was reading the first chapter and learning about Ronan's diagnosis, I kept on thinking what having Tay Sachs would mean in a developing country like Zimbabwe or Pakistan. When you know that a nine month is about to die, what do you do in a country where there is no basic healthcare or even food? Shamefully, even thoughts of euthanasia came to my mind.
Chapter 2 I think the reason I picked this book over Book of Negroes (which I would very much like to read) is because as a mother I wanted to read about Rapp's journey.
"How do you parent without a future, knowing that you will lose your child, bit by torturous bit? Could it even be called parenting..."
I agreed with her that "Parenting advice is, by its very nature, future directed". But I also think this is not entirely true because the goal is also to make sure that my child is happy and healthy.
"Children do not exist to honor their parents; their parents exist to honor them." This quote also resonated with me. I think as parents we honour our children by loving them and making sure we give them the freedom to become their unique individual selves.
Right, so along with digesting the content of our first read, I've also been wondering what the heck I was thinking suggesting such an emotionally heavy title to a group which includes two moms plus an eventual one when the time comes, iA:) Though I hope you all know this wasn't a deliberate attempt to set everyone on edge, I'm glad you all have been able to extract something from what you've read and apply it to your own experiences.
Despite being at a relatively different stage in my life (singledom at the mo') from you three, the posts above confirm that my fears about being given any gift, only to have it taken away - motherhood in particular - are some that we have in common.
Personally, I find it an ongoing challenge to remind myself that Allah swt is the giver of all gifts and He alone, the taker thereof. I think the fear, the dread and the sheer horror the author expresses in knowing that the most beautiful and prized possession of her life is only a loan and that it came with an end-date is what makes her writing so captivating.
I've seen a few parents who I happen to be close to faced with the loss of a child - I wonder if "knowing" ahead of time eases the adjustment or makes it all that more heart-wrenching. My mother dealt with very difficult pregnancies many years ago and and to this day, reminds anyone who asks her advice that what's given to us is not for us to decide - perfect or imperfect.
Zainab, the two quotes you referenced are both ones that made me want to re-read and jot them down somewhere for future contemplation, which is exactly what I ended up doing. Some of you are experiencing parenting firsthand while others (myself included) are starting to realize what our parents have done for us, and how much of a struggle this must have been. I think the book draws heavily on the fact that parents, despite the all-knowing superheroes we expect them to be, are only human and are certainly not above experiencing grief, sadness and disappointment. Above all, I think it sheds light on the fact that despite being absolutely willing to sever a limb for their children, parents don't always have the answers, which for me is a lot to swallow.
To speak to Zainab's point, I think a condition like Tay-Sach's in Southeast Asia would come with a lot of stigma and misconceptions - as are most things, sadly enough.
P.S. You're all in my dua's for healthy, happy children and strength/ease with anything that comes your way - Ameen. : )
I grouped chapters 1 and 2 together because they are thematically similar. They deal with the diagnosis.
ReplyDeletePlus, I am hoping this would give Sana who has already read chapter 1 and waiting for her book an opportunity to share her thoughts.
Sara, when are you getting your book? Asma, I hope you are not having a hard time finding the book.
I'm hoping today. I read the first few pages online like Sana.
DeleteI've never been so excited to get a book. The chase is so exhilarating. I called the library to make sure the book wasn't in transit. I'm counting down to leave from work to go to the library!
DeleteOh... so I see no one has actually posted any thoughts about the first couple of chapters. And I just spent the last 20 minutes typing up mine :P
DeleteAfter reading the first two chapters, I had a lot to say which I think I’ll save till the end when we discuss the book.
I’ve got mixed feelings about the first two chapters. First of all it’s only the start of the book so I can’t jump to judging yet. I felt she was all over the place, which I normally don’t like it, but here I did. It was raw and only the natural way to express thoughts and emotions when a parent learns such news. When we are angry we some of our thoughts are irrational and all over the place, but as you come to the end of the 2nd chapter it all comes into place and makes sense.
I can’t even imagine how difficult it must have been for her to write all of this but like she pointed out many find relief in their pain be expressing in through writing.
I’m hoping that she’ll talk more about how things continued after the diagnosis. Rather than just expressing emotions. How long did he live for till he passed away? Where did he pass away? Was he alone, or in his parent’s arms? How has she found comfort through this writing process and does she have plans to have more children?
My neighbors had a daughter who was born with a condition in which all her motor skills would never function. So she would in a wheelchair all her life, she would have to be fed, bathed, clothed, and she would never talk. Her parents decided to never have kids after her. She lived till she was about 16 years old. It saddens me that despite given a child with no chance of a future why would you limit yourself to no longer having more children? Yes, I can understand the fear of possibly having another child just the same, but there is also the possibility that you won’t. If you made it your commitment to take of your physically disabled child until they die, which is a lot more work and effort, then why not continue to commit to raise a child who isn’t. Just my thoughts.
Did you end up getting the book?
ReplyDeleteI got it!
DeleteYay!
DeleteI ended up buying an eBook. I was debating on purchasing a hard copy then reselling it, but then I would have to go through that headache. I started to wonder what if it never got sold or got sold for too cheap. I would then be better of buying the eBook. This is the first time I've bought an eBook.
ReplyDeleteI agree with Sana, that the book starts up with a whirlwind of emotion. As the reader, you really get to walkthrough the author’s mind and experience the initial shock, and eventual realization and acceptance of the situation.
ReplyDeleteA question for the two young mothers in our book club: were you ever wrestling with fear that your child would not born “healthy” while you were pregnant? How did you overcome these moments of anxiety?
I’m in a stage of my life, where I’m constantly thinking about growing the family, but that always goes hand in hand with many “what if” scenarios. In the end, I know that everything is already written, and I have no control over what is meant to be, and to be grateful for all the blessings I’ve been endowed with, and just deal with whatever happens in the most pragmatic way possible. How do people find the strength to deal with the grief and sadness though?
The author and her family seem to have it right though. They want to let him experience the joys of world before his last breaths.
To Sana’s point regarding her neighbours not having a second child, I’m sure we don’t have the entire picture as to why they limited themselves to only one child. I’m trying to put myself in their shoes and one possibility is that they felt that while their daughter was alive, they wouldn’t be able to divide their attention and provide her with the best care possible, if they had other children.
There was one line in particular that caught my attention:
“[…] Ronan taught me that children do not exist to honour their parents; their parents exist to honour them.” (page 20). Thoughts?
In the end, it’s always disheartening to hear when parents outlive their children.
Sana, and Sara, I really liked reading your comments. Thanks for sharing them. Although, having a baby gives me plenty of time to read, it unfortunately doesn't give me the opportunity to sit down and actually express my thoughts in a coherent manner. I will inshAllah share my thoughts soon. Until then, I am really enjoying our discussion.
ReplyDeleteSara, that line stood out for me as well, except at the time I was still new to using Kindle and didn't know you could mark notes and highlight while reading. I don't know, I'm read this line out a few times to myself and I'm thinking she's trying to say that we exist to honor our children as in we are proud parents? My son crosses a milestone, such as today he put two words together. He is not honoring me, because he doesn't know or understand that yet. But I am honoring him but praising him, by mentioning his achievement to everyone else and how proud I am of him. Also, making myself feel proud that after months of trying to get him to talk he's finally getting somewhere, I think about this few years down the road, inshaAllah when he's passed a grade or an academic institution and he's up there holding his diploma, I don't need or want him to honor me or thank me, because this is what I am meant to do. I exist to help him achieve to let him know that he can do anything he puts his mind to. I dont simply exist as a paremt to take care of him, but to let him live further than his potential. I dont know if that makes sense. but it does to me.
ReplyDeleteZainab, I'm the same situation as you. My son is at an age where he's constantly craving my attention and my phone - which I'm using to read the book. Taht I've been really out of my reading and writing skills, so this book club will really help me improve my skills.
Sara to answer you question. I wanted to save this for when we discuss the book at the end. But I am eager to share my thoughts, so I'm just going to tell you.
I remember when I got pregnant and all throughout my pregnancy everyone would ask me if I plan to find out, have found out the gender of the baby. My response was that my husband and I had agreed on letting it be a surprise. I was then asked what I felt the gender would be, I would tell them that I honestly didn't know nor does it matter to me which gender it is all I honestly hope for that the baby is and remains in good health. I admit to praying madly not asking but begging Allah to keep my child clear of all terminal illness or serious health and birth defects.
Fear was always constant. There was a chance because before me my mother gave birth to a girl who was down syndrome. Doctors said she wouldn't live long because certain organs weren't fully developed. My parents said at the time they only prayed that Allah would do whatever is best for their daughter, whatever would be easy for everyone. And so a couple of hours after being born, Surraiya (that was her name, not sure about the spelling) died. My parents said she was unbelievably beautiful.
During delivery, while I was getting ready to push, there was a frightening moment where the nurse warned me that there would be a chance that my child would come out not crying and if so they would not give him to me immediately. They would have to insert a what appeared to be a relatively long IV tube down the baby's throat. I wanted to cry, but there was no time to cry because it was time to push. But I was once again praying asking Allah to keep my baby healthy. Always and forever.
Even now, everyday, when I put my son to sleep, I pray to Allah to always protect him for serious harm and illnesses. Of course, we can't control everything, I do try to think and pray that if God-forbid something is to happen that I'm strong through it all. I try my best to enjoy every day and every moment with my son not only for the sake that he is my son, but because of an amazing blessing he is in my life. \
I'm sorry for errors, mistakes, i wanted to take time to proof read, i was honeslty just typing out my thougths and feelings but i dont have time to proof read I need to wake my son up from his nap.
DeleteI love Kindle! I love that it allows for highlights and notes.
DeleteSana, I can so relate to your pregnancy and delivery experiences.
DeleteTo answer Sara's question, yes I was also very scared about the whole prospect of trying to have a baby, getting pregnant, and then delivery. When I first found out I was pregnant I was so scared to tell anyone. I didn't tell any of my friends I was pregnant until after the first trimester. And, every month when I went to the doctor for my pre-natal visits, I would wait anxiously to hear my baby's heartbeat, scared that it might not be there.
I was also scared about the labour. My mom had a stillbirth, so I was always thinking about that, especially when they couldn't hear Sophia's heartbeat when she first came into this world.
I had the genetic counseling during my first trimester. Again, I was scared during that first ultrasound when the check for Down Syndrome. I am doing my master's in intellectual disabilities, so throughout my pregnancy and even now (sometimes) I am constantly checking for signs of autism or even Tourette Syndrome.
Chapter 1
ReplyDelete"This is a love story, which, like all great love stories is ultimately of a story of loss."
I found this line heartbreaking, but also very self-actualized.
I read 'We Need New Names', which is a book about a girl's journey out of impoverished circumstances in Zimbabwe to America, right before starting this book. So when I was reading the first chapter and learning about Ronan's diagnosis, I kept on thinking what having Tay Sachs would mean in a developing country like Zimbabwe or Pakistan. When you know that a nine month is about to die, what do you do in a country where there is no basic healthcare or even food? Shamefully, even thoughts of euthanasia came to my mind.
Chapter 2
I think the reason I picked this book over Book of Negroes (which I would very much like to read) is because as a mother I wanted to read about Rapp's journey.
"How do you parent without a future, knowing that you will lose your child, bit by torturous bit? Could it even be called parenting..."
I agreed with her that "Parenting advice is, by its very nature, future directed". But I also think this is not entirely true because the goal is also to make sure that my child is happy and healthy.
"Children do not exist to honor their parents; their parents exist to honor them." This quote also resonated with me. I think as parents we honour our children by loving them and making sure we give them the freedom to become their unique individual selves.
p.s. Like Sana I am also concerned about typos. I am just quickly typing up my thoughts because I know my kid will be waking up from her nap soon.
DeleteRight, so along with digesting the content of our first read, I've also been wondering what the heck I was thinking suggesting such an emotionally heavy title to a group which includes two moms plus an eventual one when the time comes, iA:) Though I hope you all know this wasn't a deliberate attempt to set everyone on edge, I'm glad you all have been able to extract something from what you've read and apply it to your own experiences.
ReplyDeleteDespite being at a relatively different stage in my life (singledom at the mo') from you three, the posts above confirm that my fears about being given any gift, only to have it taken away - motherhood in particular - are some that we have in common.
Personally, I find it an ongoing challenge to remind myself that Allah swt is the giver of all gifts and He alone, the taker thereof. I think the fear, the dread and the sheer horror the author expresses in knowing that the most beautiful and prized possession of her life is only a loan and that it came with an end-date is what makes her writing so captivating.
I've seen a few parents who I happen to be close to faced with the loss of a child - I wonder if "knowing" ahead of time eases the adjustment or makes it all that more heart-wrenching. My mother dealt with very difficult pregnancies many years ago and and to this day, reminds anyone who asks her advice that what's given to us is not for us to decide - perfect or imperfect.
Zainab, the two quotes you referenced are both ones that made me want to re-read and jot them down somewhere for future contemplation, which is exactly what I ended up doing. Some of you are experiencing parenting firsthand while others (myself included) are starting to realize what our parents have done for us, and how much of a struggle this must have been. I think the book draws heavily on the fact that parents, despite the all-knowing superheroes we expect them to be, are only human and are certainly not above experiencing grief, sadness and disappointment. Above all, I think it sheds light on the fact that despite being absolutely willing to sever a limb for their children, parents don't always have the answers, which for me is a lot to swallow.
To speak to Zainab's point, I think a condition like Tay-Sach's in Southeast Asia would come with a lot of stigma and misconceptions - as are most things, sadly enough.
P.S. You're all in my dua's for healthy, happy children and strength/ease with anything that comes your way - Ameen. : )