Lately , I find it hard to know what to write about. I have so many things I am juggling and many I can't blog about or don't want to. I don't like to put my fears in writing least they come back to haunt and taunt me.
I feel very anxious about my Neurofibromatosis and I don't know what to do. I read inspiring stories like this fellow and also Reggie Bibbs.(I am not affected by facial tumours in this way) I want to cheer their strength and tenacity for thriving and living life to the full, at the same time as I'm feeling depressed about the future.
I feel a lot of guilt.
I recently read Jodi Picoult's 'Second Glance' ... one of the themes in the book was about genetics. It briefly, in fiction (but definitely with supporting factual information) detailed how at various times in history people have been sterilised against their will (or murdered) for the purposes of 'wiping problematic citizens from the population'. Eugenics.
Nazi eugenics or racial hygiene was practiced by Hitler and even today genocide is common place in some countries, purely racially motivated.
Preimplantation genetic diagnosis was also mentioned in the context of parents chosing embryos so that they are unaffected by genetic diseases or of a sex that cannot pass on inherited diseases. The ethics of it all both scares me and encourages me. I honestly don't know how I would feel if I had to make these decisions.
I would give anything not to have NF in my family but at the same time what would the world be like if we were all perfect. So many of us are different and do not fit in because in the eyes of the world we are less attractive. Beauty (and body perfection) is foremost, a quality that makes the world revolve, billions of $ are spent on attaining beauty and the celebration of it .
Billion$ more on counselling for those who feel they fall short of the mark. Others starve themselves thin or undergo surgery to correct imperfections.
Does having imperfections or disabilities make us less valuable or less likely to be loved?
What if society comes to the point that we disregard every baby not born perfect or wipe them all out while they are but a few cells...or later on. I have to say now that those parents who face terminal diagnoses for their baby during pregnancy have my heartfelt respect. I would not want to walk in their shoes ever ...I am just saying .
What if we weren't given a choice and all those identified as "life unworthy of life" were terminated. It is all too terrifying.
I still wish I was normal and so was my son.
PGD was not an option for us ...
So is black a shade or a colour ?Nazi eugenics or racial hygiene was practiced by Hitler and even today genocide is common place in some countries, purely racially motivated.
Preimplantation genetic diagnosis was also mentioned in the context of parents chosing embryos so that they are unaffected by genetic diseases or of a sex that cannot pass on inherited diseases. The ethics of it all both scares me and encourages me. I honestly don't know how I would feel if I had to make these decisions.
I would give anything not to have NF in my family but at the same time what would the world be like if we were all perfect. So many of us are different and do not fit in because in the eyes of the world we are less attractive. Beauty (and body perfection) is foremost, a quality that makes the world revolve, billions of $ are spent on attaining beauty and the celebration of it .
Billion$ more on counselling for those who feel they fall short of the mark. Others starve themselves thin or undergo surgery to correct imperfections.
Does having imperfections or disabilities make us less valuable or less likely to be loved?
What if society comes to the point that we disregard every baby not born perfect or wipe them all out while they are but a few cells...or later on. I have to say now that those parents who face terminal diagnoses for their baby during pregnancy have my heartfelt respect. I would not want to walk in their shoes ever ...I am just saying .
What if we weren't given a choice and all those identified as "life unworthy of life" were terminated. It is all too terrifying.
I still wish I was normal and so was my son.
PGD was not an option for us ...
Black is a Colour. Black absorbs all frequencies of light in the visible spectrum producing the colour black. The black object does not emit or reflect light.
Black is a Shade. Although Black is primarily considered a colour, Black can also be part of the Achromatic colour sets - Grey, (or Gray) is a range of tints and shades ranging from Black to White.
so the argument here is not "Is it a shade or a colour" at all...~It is both!
♥LIVE every moment ღ♥¸.•*¨`*. ¸.•
LAUGH every day ღ♥¸.•*¨`*. ¸.•
LOVE beyond words ღ♥¸.•*¨`*.¸.•
BE Grateful for what You have¸.•*¨`*.¸.♥☼ and I AM !
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15 comments :
Oh honey...I too worry about my kids....especially the NF ones. Life is precious enough...then NF has to come in a wreck everything.
This was an awesome post...and I feel exactly they way you do!
I have this friend, who just had her beautiful freckles lazered off, because she thought they were ugly---God, if she only knew!
I'd give anything (short of my soul because thats the only thing that ISN't FLAWED) for this NF to go away!
YOU will be okay...your baby boy will be okay.
(((((BIG HUGS)))))
Although I have no idea about the condition of which you speak, I think that cauterising variation would stagnate the human race far too much - I am not a Brave New World woman.
I remember seeing some comparison once of two children and one had so many genetic factors against him while one had a genetic heritage to die for - Beethoven and Hitler.
You certainly have given me pause and caused deep thought. I don't know what I would do given the choice and it both frightens me that there is the possibility of that happening and excites me in a certain way also.
It is so hard to say, but as I said, you certainly have me thinking.
Reminded me of the movie 'Gattacca'.
Jeanie's comment was food for thought...
@NF mommy - thank you.You inspire me very much.
@Jeanie - yes I think I read something about that once. Great point.
@Vixen - It has given me deep thoughts too and it was so hard to condense this post.The thoughts were endless.
@Frogdancer - thank you I googled it and I love the tag line
"There Is No Gene For The Human Spirit"
Brilliant.I might have to hire it.
Yes, jeanie's comment was.
Thank you for blogging on this subject, which so many people want to shy away from.
Life does not come with a money-back guarantee.
I hope you find some peace from the anxiety and depression soon.
xoxox
Sorry you're feeling down. You don't have anything to feel guilty about. I know it's easy for me to write that, not so easy for you to believe it, but it's true. (((hugs)))
Hugs to you my lovely bloggy friend. You are beautiful!xxxx
ps. I won't be attending this sat's blogchicks lunch. Sadly I am working and can't afford to miss work. I work on a casual basis so if I don't turn up I don't get paid. Have a fab time though.
Discussions like this really, truly make me think. I like to think that I would not terminate a pregnancy regardless of what my doctors thought/knew the outcome would be, but oh my God, when I read some of the stories where people actually have to deal with that scenario (in terms of an ultimately fatal diagnosis), I waver. I just don't know. It challenges my typically pro-life-no-matter-what stance.
In terms of altering genetics or selecting embryos for reasons that are not life-threatening, I don't think I agree with it. As you said, although it would be better to live without a lot of possible conditions, and better to live without worrying about our children being affected by them, who is perfect?
I don't know. This is truly one of those topics where your own life experience could completely change your opinion.
As you know, we have been really worried that Brooklyn has some signs of autism, but she is too young to diagnose. Autism runs in my husband's family. The other night, I was talking to my best friend about the whole situation, and she said, "Well, didn't you think about this before you got pregnant?"
what????????????
I would want my daughter no matter what. I will love her no matter what happens, no matter how hard it may be. That's why I feel like I can say I disagree.
Deep in thought now.
There in indeed lots to think about in this post. The emphasis on beauty and perfection can be all to overwhelming.
Hi sweetie! I just had a minute to check your site ...and I finally realized that my niece has NF (never before had I realized that you have what she has)...and she just found out she is pregnant! I want to share your site with her because you are such a beautiful soul and can share a lot of strength, honesty and love with her. Thanks for writing dear. And KNOW you are worthy!!!!!!!!!!! ABSOLUTELY!!!!!!EVERYONE passes on something less than perfect to their children. Its just the way it is.
I strongly agree with you.
The world would be a sad place if we were all perfect.
Plus, a perfectly healthy baby does not equal a perfectly healthy child.
My older sister was born fine and healthy. My younger sister was born premature and with birth defects.
But it was my older sister who ended up having the most medical problems. She was hit by car. She needed hospitalizations, surgeries, therapy, etc. Ten years later she still has to take expensive medication.
I think it will be sad if we try to engineer perfect babies. I think it's great if we can CURE babies before they're born. But I don't think it would be good if we aborted babies simply because they didn't meet our very high expectations.
I'm not familiar with neurofibromatosis (although after reading your post I read up on it)
I hope for the best for you and your son.
And I agree- a girl on a message board due at the same time I was had a terminal /fatal diagnosis and she chose to carry to term. I can't imagine the strength that took. I think about her a lot.
My cousin has PKU- while it does not show on the outside, she mentioned to her mom that she hoped our girls would have it as well. Sounds odd but it came to surface that she just wanted someone else to be like her and not be so alienated at times.
Dear Desparately looking for the light...at the end of the tunnel. I know how you feel. And I hope you will not live in fear. We have so much more hope then we had 5 or 10 years ago. Always believe in a cure for nf. It is hard for me at times, so your feeling are normal. Even with those feelings, we have to keep pressing on. That is what I do. You can do it as well.
Reggie Bibbs
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