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[JohnBlack]

I think you were pretty brave to own up to this.  There is a lot of truth in what you say.  Most people are aghast at people who are different but not everyone can own up to it.  You are farther ahead than a lot of people when you can see this in yourself and I want to thank you for being able to express it this way.  Lots of people talk about accepting differences but it takes some soul-searching to get beyond our primitive instincts, which are to reject people who don't look like us.  And more than "Now, now, that's a bad thing to say about people who are different" and actually interacting with and befriending people with disabilities and/or differences when they come our way.  Lots of people say, "Sure, you can live, but don't use my tax money for support and keep your damned group homes out of my neighborhood."  Well, thanks for your large support.

This does not apply to anyone who posts here, I just want to back Chippy for being able to say out loud what many people think and feel but don't have the courage to own up to.  As I have said before, we are (all of us) "works in progress" and Chippy is now farther down the path of progress for being able to know this.  Life can be hell when you are different and it does take a lot of thinking to make a major decision like this that impacts another person's life so directly and so cruelly.

I obviously have an opinion about this, but wanted to make sure that Chippy is commended for bringing the subject up and for being so open about it.

I agree.  My own post was by no means an attack on Chippy.  I'm hopeful that this thread can maintain its thus far polite tone.

[Chippy]

I really appreciate the support, Lynne. I take no offense to anyone who disagrees with me one bit. The very reason I posted here and not on another forum is that I know this place probably has the highest ratio of mature members. Even then, I was still pretty sure I was going to be attacked... to my surprise I wasn't. I truly hope that some day I can learn to look past appearances more than I do. Vanity and judgment of others is my weakness. I suppose it came from being heavily and regularly critiqued myself. You can't imagine my parents horror when I gained a few pounds or when they found out I had a minor learning disability. I am ashamed of the way I judge people, even when I do not do it aloud. My own thoughts disgust me.

Enough about how pathetic I am, eh?

Some crazy things can happen during development. For example, a SNAFU during development left my boyfriend missing his left kidney, and deaf in his left ear. There is bone where his eardrum should be, and the kidney and associated plumbing just never developed. As for Juliana, I was not aware of the heart defect involved in this case. Is there a specific name for her condition? I suppose the parents did not know the degree of the defect. I still fear for the child's self-esteem and mental health, knowing there are jerks out there like me who would likely initially recoil at the sight of her. I do this, and like many things about myself, I'm not proud of it.

[Lynne]

I agree.  My own post was by no means an attack on Chippy.  I'm hopeful that this thread can maintain its thus far polite tone.

I am usually impressed with the people on this Forum as far as being able to express opinions without degenerating to rabidness. Well, aside from my own self, of course.   

[Lyric]

Correct me if I misunderstood your point - I understand it to be that what one person may perceive as selfish another may perceive as being selfless

Thats where I was trying to go.

I have to agree, and I am not knocking Chippy at all for this.
This is a tough subject to broach, simply because of what we all agree on.  That what is in the real world and what is in the wished world are vastly different.

The right and wrong of this, is just not a debate that can happen.  Simply, because there is no way to have a clear view of this, unless you have lived through something like this.

Edit-
I am sure that there is a specific name for the defect.  But, I don't know what it is.
From what I have seen in watching her case on television.  Is that the frontal bones of her face did not form properly.
Which means she is lacking in what shapes the face and secures the eyes into their orbits.
I do know that this is an incredibly rare type of deformity


Chippy, I have to commend you for bringing this up and owning it.  Like many others here, I hope that this is able to maintain its respectful tone.

[Mad Dawg]

Yeah, thank you Chippy for discussing this, as it is an important issue.

It's really hard for me to make up my mind on this issue. On one hand, you have a little girl who is physically deformed and will probably endure nasty comments, hard times, and a difficult life in the future. On the other, you have a little girl who has fought valiantly for her life, appears to be happy in her photos, and has two parents that clearly love her very much.

Were her parents doing something selfish by letting her live? In my opinion, no. Any parent would want to see their child prosper and be successful, and this is just what Juliana's parents did for her. It is true that her life will inevitably be difficult, but she will still continue to have a life just like any other human being. And that's the most important thing of all.

[Tony C.]

That is one very lucky little girl. Her parents are very brave, and loving. My sister-in-lw had a neice, Samantha. She had Ataxia Talengictasia. A.T. for short. Most children who have this didn't live past 10 when it was first discovered, or named. I remember hearing that, one day, when she was younger, she told her mother how fun it was growing up. When she was in her junior year of high school, a very well-brought up boy took her to their junior prom. She also went to her senior prom. She passed away at 19. This girl could very well meet someone. You never know. There is someone for everyone. I bring this up because I know how difficult it is to raise a handicapped child. Ask Mayme, she knows too......And every time I see something like this, I thank God for my sons health. But we would never have given him up, for any reason.

Chippy, I agree with Lynnie too...

I truly hope that some day I can learn to look past appearances more than I do. Vanity and judgment of others is my weakness.

You will, Chippy. You will...

[Lynne]

Treacher Collins syndrome:

http://www.treachercollins.org/main.html
http://ghr.nlm.nih.gov/condition=treachercollinssyndrome
http://www.treachercollins.co.uk/

[everyhumandies]

It is amazing and pitifully sad that we do judge each other almost immediately by our looks - even young kids do it. I used to have a "look" when I was in high school, with pretty long hair, and at one point, a mohawk... - I dressed punkish or rockish most of the time, and after a while, I noticed that just having long hair or looking different, people would have a pre-conceived notion of who I was and what I was into, meaning often people thought I was a druggie and therefore a loser. I even had a drama teacher that always made me play the party guy role in various practices, and she insinuated that I seemed to know how to play the role so well ( hint hint, you druggie...) I got really sick of it after a while, always having to prove to people that I didn't take any drugs, and I wasn't some punk or some criminal...eventually, I gave up on the strange styles and started dressing "normal" and found right away that I was able to connect with people more easily.

Some of the best people I've ever known are people with lots of tattoos, or piercings, or both, who dress all rocked out and who found ways to deal with being  looked at like they are bad - it was a huge lesson to learn. I generally prefer to blend in now, and the only time I really want to draw peoples attention is when I play music, but it;s not at all about an image for me.

That girl makes me feel bad when I look at her. I think about how hard her life has been and how hard it will continue to be, for the fact that her face is frightening. But I also see that she is a person, with feelings, and that she really exists from the inside out, as we all do. Clearly, she has a lot of love in her life, and to me, that is what life is all about, so in that sense, I think she'll do okay...

[Kitten7]

As I said, preconcieved ideas on what someone appears to be can, in itself be a severe handicap. I hoped someone would give me some feedback also, as I'm unsure if my point was understood or misconstrued.

[everyhumandies]

This also makes me remeber Chris, the severly handicapped son of a friends girlfriend I used to hang out with. He was born with all sorts of bad issues - blind, deaf, and with  really bad cerebral palsy. His whole life was spent lying there, moving around seizing up and drooling uncontrollably. Somehow, though, without being able to see, without being able to hear, and without the use of his body other than to convulse or lie there, he would smile and laugh when you touched him. Inside that rotten body of his, was a person, and his Mom said she was told before he was born that he would be that way, and was encouraged not to give birth to him. She did anyway, and said that she has never regretted it even for a second. So, what is that? What lesson is learned by giving up your life to become th caregiver for someone that will never get better, and will likely die early, and will never experience any type of activity that we healthy people can?

Love, maybe? Selflessness? The growth of an incredibly nurturing spirit? These are things many people never experience, even if they are handsome or pretty, or healthy. But to me, they are what life should be about. 

[Cyber]

I once heard someone say, "What others think of you is none of your business."  Pretty profound, really.

This little girl looks happy and for her spirit's sake, I hope she can find as much happiness in life as possible.  Those who choose to ridicule her and deliberately do things to hurt her, IMO, are the ones with the real problem.

Thanks, guys for sharing your stories of struggle; I'm sure it's one of the most difficult things in life to be faced with a sick child, but I agree with what everone says - it shows how the human spirit endures and perseveres.

[Kim]

I thnk that my brother and I was watching discovery channel or saw the ultrasound on the computer. we both looked at each other and someone asked what would you do? we both agreed that it woud be wrong to bring her into the world that she was ment to be with God. and it would be wrong to allow her to suffer. I believe that abortion is only to be used if you have been raped, medical reasons for mother or child. both of us agreed thatt we would not keep the child andso the child wouldn't have to suffer from the muliple sugeries the othe medical issues that nobody knows about. If they deside to have other childeren what happens to them mom and dad have a resonability for there sister.

[AuntMaymeMommy]

OK.  I can no longer keep my mouth shut.  In all honesty, Chippy's post makes me want to cause bodily harm to him.  I suppose that is my mother's heart speaking.  I will refrain from being nasty although every instinct in me wants to be.  Tony said if you want to know what it's like ask me.  Well, I do know what it's like.  I guess that is why I am having a hard time not vomiting at some of these comments.  My baby is eighteen now.  She has a condition called agenesis of the corpus callosum.  She has cerebral palsy.  She is deaf.  She has some MR.  She has behavioral issues and can become extremely aggressive.  She is at times very difficult to manage.  There are times I get tired, frustrated, angry and wonder why I should be allowed to live.  After all, I am not good enough to handle all her needs all the time.  Sometimes she even attacks me.  She has a weight problem due to not being very mobile.  So, she is physically hard for me to handle.  Then there are the other times.  The times when I look at her and am amazed.  Yesterday I did not feel well.  My stomach was upset and I was on the couch.  I was cold but didn't have the energy to grab a blanket.  She came up to me and asked me what was wrong.  I told her I felt sick.  She asked me what hurt and I told her my stomach.  Then she asked me if I was cold.  I told her I was and she got a blanket and very carefully covered me.  She even checked to make sure no toes were sticking out.  Then she kissed me and offered to make me some soup.  (I don't think I trust her to make me soup though!)  Or the night her cousin was born.  She sat up all night outside the delivery room doors so that she would be one of the first people to hold him. After he was born and before he was even dressed she was taken into the delivery room.  (The delivery was not a smooth one.)  She was handed her new baby cousin.  She took him into her arms and said to him, "Taylor, you are beautiful.  I love you."  Taylor is eight now and they are inseperable.  Before he learned to walk he learned to climb into her wheelchair.  I need help with her sometimes.  It isn't easy.  It's downright hard.  Do I regret my decision to not abort her? Not for a minute.  They told me I should abort her when I was in my fifth month of pregnancy.  That is when they discovered the agenesis of the corpus callosum.  They told me she may never even know who I am.  In the doctor's office when they gave me that option I felt a tiny little drumming on the inside of my tummy.  She was kicking up a storm.  I put my hand on my belly and thought, "Are you telling me something, Little One?" Then the kicking started furiously up again.  So, I told the doctor there would be no abortion and I told myself that however hard it was going to be I would manage it with as much love as I could.  Do I feel all love and smiles all the time?  Of course not.  I'm human and she can get on my last nerve just like any other kid.  As for if a child belongs "with God" I personally feel that is for God to decide.  I am very pro-life and have reached that decision based on my own life experiences.  Because of my own life experiences I also understand the difficulty involved in that decision.  It is really hard to know if you are really pro-life or pro-choice until you walk in some damned uncomfortable shoes a few miles.  Amanda Nicole was born at 9:24 pm on November 12, 1989 at 36 weeks gestation.  She was 4 lbs. 15 oz.  She spent 10 days in the NICU and stopped breathing several times her first night of life.  She fought her way through those first days.  She was diagnosed at one year old as having failure to thrive.  She refused to eat and we were going home from the pediatrician's office to get her stuff to be admitted to the hospital to get a feeding tube.  She spotted a KFC sign and started going, "Mmmmmmmmmmmm."  She ate 4 mashed potatoes and gravy.  She didn't need the feeding tube.  She has been the local Easter Seals poster child and the Pittsburgh Syria Shriner's poster child.  She has ridden her pony in horse shows even with casts on both legs.  She has also been Shriner's Rodeo Princess and has ridden in the rodeo proudly wearing her tiara and sash. She likes to swim and play baseball.  She has also ridden a mechanical bull.  She is fearless in amusement parks and rides things that make me puke.  When she laughs she laughs hard.  She will make you laugh so hard that tears roll down your face.  Here are a few pictures of her.  I am so glad I made the choice I made.  I don't have to wonder if those people made the choice they did out of selfishness or love.  I know.  It was LOVE.


Here she is at my wedding.


She's the second one from the left. This is her favorite ride.


Here she is at the flight 93 memorial.


Fixing the bike we found at a yard sale.


First ride alone.


Castles in the sand

Oh yeah, and "Go ahead...

Make her day!"

Those pictures are just a small sample of why I never regret giving birth to her for a minute. 

[Tony C.]

You are a very special Mother Mayme. It is a very difficult path to choose. I have much respect for you.   

[AuntMaymeMommy]

Here are a few more reasons I don't regret my decision. 


My sweet little baby


Taking care of baby sister


Held by great grandmother


Baking with Grandma