Saturday, July 15, 2006
The Dharma of Parenting and CHDs
When we are at the hospital, I use this blog as both a way to convey information and to help bring order to all the information I need to process. As a consequence I usually am not able to post regarding the myriad emotions and thoughts such an occasion brings.
I think posting about these thoughts and feelings can benefit others going through similar situations as well as those who have not had to have such experiences. So, I would like to take a minute to do just that while this is fresh.
It is my belief, the feelings a parent has while their child is suffering are common. This I feel is not related to the relative degree to which the child is suffering. As I have said here before, I think suffering is suffering.
I think it is important that parents of children with CHDs not fall into the easy trap of the "why me?" mind set. There is no benefit to these types of thoughts. I had these feelings very strongly right after Sophia was born. After all, I had spent several months preparing for a healthy child. This is to say I expected her to be strong, wise, and have all the potential to rule her world. Over time, it has become clear her CHD can be an asset in developing these qualities rather than a handicap.
I can honestly say I have not had these feelings since.
In some ways I actually feel blessed by her's and our situation. I have seen so many people take their children's growth and happiness for granted. It is only because of Sophia's heart condition that I have learned to celebrate her every breath and as a consequence my own as well.
There is of course a spiritual nakedness to this situation that I appreciate as well. Even though impermanence is integral to everything I experience, it is somehow the easiest thing to hide from. When I am healthy and all those I hold dear are well, it seems like it will go on forever. This is why illness and mortality can be so incredibly shocking. However when I look honestly at my situation, illness and death are an essential part of living. How would I ever experience the bliss of life without the relative comparison of suffering. Health would mean nothing without the experience of illness and life would mean nothing without the experience of death. I am of course not saying I think death and illness are something anyone should have to go through. These matters are incredibly painful and I would not wish the experience of grief or suffering on anyone. What I am saying instead is this.
As we go through life, it is possible to become quite thick-skinned and isolated. The inherent suffering of impermanent existence can fall from awareness. As a consequence, the experience of blissful joy can also fall from awareness. Having to accept the mortality of my child has laid my awareness wide open. I have become more naked to experience all the universe has to offer, not through the narrow judgments of good, bad, and neutral, but just as they are.
It sounds crazy. But I do not see Sophia's mortality as any different than anyone else's. Any one of us could die at any moment. What is different is this awareness I spoke of above. It is through this awareness that I can truly appreciate the nature of things without all the confusion and apathy life can bring.
So, Sophia's heart defect has reminded me to be open and aware in a way that allows me to experience all that life has to offer. I am able to experience life as it happens and avoid the constant clinging to past and future. In this way, I feel quite blessed.
I do not know if anyone else will relate to this. After all, we all have different beliefs and experiences. I surely do not mean to imply that what I have wrote above is how anyone else should feel or think. I just wanted to write in regards to my feelings about having a child with a congenital heart defect in the hope it might benefit someone.
I think posting about these thoughts and feelings can benefit others going through similar situations as well as those who have not had to have such experiences. So, I would like to take a minute to do just that while this is fresh.
It is my belief, the feelings a parent has while their child is suffering are common. This I feel is not related to the relative degree to which the child is suffering. As I have said here before, I think suffering is suffering.
I think it is important that parents of children with CHDs not fall into the easy trap of the "why me?" mind set. There is no benefit to these types of thoughts. I had these feelings very strongly right after Sophia was born. After all, I had spent several months preparing for a healthy child. This is to say I expected her to be strong, wise, and have all the potential to rule her world. Over time, it has become clear her CHD can be an asset in developing these qualities rather than a handicap.
I can honestly say I have not had these feelings since.
In some ways I actually feel blessed by her's and our situation. I have seen so many people take their children's growth and happiness for granted. It is only because of Sophia's heart condition that I have learned to celebrate her every breath and as a consequence my own as well.
There is of course a spiritual nakedness to this situation that I appreciate as well. Even though impermanence is integral to everything I experience, it is somehow the easiest thing to hide from. When I am healthy and all those I hold dear are well, it seems like it will go on forever. This is why illness and mortality can be so incredibly shocking. However when I look honestly at my situation, illness and death are an essential part of living. How would I ever experience the bliss of life without the relative comparison of suffering. Health would mean nothing without the experience of illness and life would mean nothing without the experience of death. I am of course not saying I think death and illness are something anyone should have to go through. These matters are incredibly painful and I would not wish the experience of grief or suffering on anyone. What I am saying instead is this.
As we go through life, it is possible to become quite thick-skinned and isolated. The inherent suffering of impermanent existence can fall from awareness. As a consequence, the experience of blissful joy can also fall from awareness. Having to accept the mortality of my child has laid my awareness wide open. I have become more naked to experience all the universe has to offer, not through the narrow judgments of good, bad, and neutral, but just as they are.
It sounds crazy. But I do not see Sophia's mortality as any different than anyone else's. Any one of us could die at any moment. What is different is this awareness I spoke of above. It is through this awareness that I can truly appreciate the nature of things without all the confusion and apathy life can bring.
So, Sophia's heart defect has reminded me to be open and aware in a way that allows me to experience all that life has to offer. I am able to experience life as it happens and avoid the constant clinging to past and future. In this way, I feel quite blessed.
I do not know if anyone else will relate to this. After all, we all have different beliefs and experiences. I surely do not mean to imply that what I have wrote above is how anyone else should feel or think. I just wanted to write in regards to my feelings about having a child with a congenital heart defect in the hope it might benefit someone.
Comments:
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You said on my blog the other day that we seem very similar in certain aspects - this is another of those times.
I have, admittedly, felt the "why me" and still believe that my family has suffered more than many... but it isn't something I (usually) feel sorry for myself over. (OK so I am guilty of wallowing in self pity ocassionally)
I really feel as though I am privvy to certain realizations that others simply don't see. I know that who I am, how I feel, and what I experience of life and the world is not only different, but better than someone who has not suffered.
I am a better person for having known the children I lost, and for knowing all those I've met through them, and for the altered perception I have of the world because of them.
Would I prefer to be less aware and still have my children... probably. But since it wasn't my choice, I'm glad that I've become who I am through it.
I have, admittedly, felt the "why me" and still believe that my family has suffered more than many... but it isn't something I (usually) feel sorry for myself over. (OK so I am guilty of wallowing in self pity ocassionally)
I really feel as though I am privvy to certain realizations that others simply don't see. I know that who I am, how I feel, and what I experience of life and the world is not only different, but better than someone who has not suffered.
I am a better person for having known the children I lost, and for knowing all those I've met through them, and for the altered perception I have of the world because of them.
Would I prefer to be less aware and still have my children... probably. But since it wasn't my choice, I'm glad that I've become who I am through it.
Boy did I go off on a tangent. Sorry. Just wanted to add a thanks, for sharing your thoughts this way.
Erin-
Thanks so much for your comments. I am often wary of making these kind of posts. Because I am aware of my ability to alienate people. It is good to know someone understands and appreciates these type of posts.
-M
Thanks so much for your comments. I am often wary of making these kind of posts. Because I am aware of my ability to alienate people. It is good to know someone understands and appreciates these type of posts.
-M
That's ok, I'm wary about responding sometimes to others' posts like this - rereading my reply I realize that I sound like I'm "better than" someone else, and that isn't what I meant at all!
Mostly I just mean that, like you said, the awareness causes you to see the good.
Mostly I just mean that, like you said, the awareness causes you to see the good.
I read and understand your post.
I am a mom to 2 special needs boys, it is challenging but I can't imagine my life any other way.
I will admit to occassionaly asking why me, but more often I ask why them? Why should they have to work so hard to do the things that other children their ages take for granted. I have learned to find joy in the ordinary.
I am a mom to 2 special needs boys, it is challenging but I can't imagine my life any other way.
I will admit to occassionaly asking why me, but more often I ask why them? Why should they have to work so hard to do the things that other children their ages take for granted. I have learned to find joy in the ordinary.
First of all, I am so happy to hear that Sophia is already scooting around!! That girl is seriously tough :) Thank you so much for all of your posts... the technical stuff and the emotional stuff. It's all very important, and I'm always eager to read what you are willing to share. I find this post very inspirational. I've definitely been through my "why me?" days, and I've definitely gotten to the realization that Brayden's ToF brings us many blessings -- the biggest being that I have a more tuned-in appreciation of every day life.
I have learned through Sophia and her parents that no one should sweat the small stuff, I was a worrier and concerned myself with such senseless and unimportant issues. They all have helped me realize that to experience life as we find it is so much more important than wasting time on "poop".
We all have "poop" in our lives, some more than others. We need to learn from these challenged babies that life is full of small accomplishments and to celebrate the smallest thing they can do and praise and kiss them all the time.
Let your house get dirty and the dishes pile up, get down on the floor with your sweet child and play with him or her and show them you love them.
This is what life is all about and I learned this from Michael, Patty and Sophia.
I love this family from the bottom of my heart and each minute I can spend with them is the most important.
Every Sunday I go to church and light a candle for my children and my grandchildren, praying for less "poop" for all of them. What more can you ask , angels watch over us all and I know they have a special interest in all CHD children, after all God made them and now he needs to protect them from pain and suffering.
I know this is long but I needed to say all of this and to tell all who read this that I don't know how you feel but I do care.
We all have "poop" in our lives, some more than others. We need to learn from these challenged babies that life is full of small accomplishments and to celebrate the smallest thing they can do and praise and kiss them all the time.
Let your house get dirty and the dishes pile up, get down on the floor with your sweet child and play with him or her and show them you love them.
This is what life is all about and I learned this from Michael, Patty and Sophia.
I love this family from the bottom of my heart and each minute I can spend with them is the most important.
Every Sunday I go to church and light a candle for my children and my grandchildren, praying for less "poop" for all of them. What more can you ask , angels watch over us all and I know they have a special interest in all CHD children, after all God made them and now he needs to protect them from pain and suffering.
I know this is long but I needed to say all of this and to tell all who read this that I don't know how you feel but I do care.
# posted by 
: 7/15/2006 7:42 PM
: 7/15/2006 7:42 PM
I agree with your comments, Michael. You've reminded me of some good lessons that I learned when Joseph was so critically ill, lessons I sometimes forget. I tell people what an awazing life-changing experience it was (the whole Joseph's early-life/surgery thing), how thankful I am for it. I only wish I could express myself with words the way that you can!
I too agree. Jacob really made us take a step back, especially being number four. We broke out of routine and I have noticed that we appreciate a lot more with all of the children than we used too. If the kids want to play, I play, even if I have dishes up to my eyeballs. I try to keep a good balance, but I realized I was taking things for granted. And now that I have had my eyes opened and I see just how precious life is, I try to make each moment count. :)
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# posted by : 7/17/2006 11:34 AM
: 7/17/2006 11:34 AM << Home
