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I understand... (Reply to this comment)
by dasaspa
Your article was verbatim our experience with our own son, Sam, who is now 9 years old. From the stinging silence in the operating room, when he was born, through the many painful experiences of handing him to the Doctors and nurses for each one of his surgeries (5 in all). Sam also had a large hairy nevus which covered almost half of his face, covered over his left eye. It has been removed from a series of surgeries focusing on tissue expansion, with an expander on his forehead and one on his neck. To date, we have tried to consistently massage his facial scars, almost every other day, to try to release the scar tissue, as one of his scar (tightening) does pull down on the inner corner of his eye.
He is doing remarkably well, and has been blessed from the get go with a resilient attitude. There's so much more that I could say, but can't right at this time.
Thanks for the article. It's amazing how when something as serious as this happens in your life, that you feel no one else understands are has ever experienced it.
Gloria
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Jul 29 '05
8:25 am PDT
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Re: Thank you (Reply to this comment)
by gredler
Hope I can help in any way. I have a son with a large congenital hairy nevus. It totally covers his left elbow, wraps around his arm, and is now about 7 inches long. He will be 9 years old in August. At the time of delivery I had never seen anything like it, nor had many of the hospital staff we came in contact with. But now, after being sent to many specialists, we are very learned about our options. Because of where his mole is; covering the entire elbow joint, bottom line is that he could lose movement in his arm with so much scar tissue after removal. Most of the specialists agreed that the best thing to do would be to watch it and only remove if it were to become cancerous, or for cosmetic reasons. The comment that sticks in my mind from one of the specialists said a few years ago, "kids can be cruel". So it comes down to can he live with it. And he does, very well. My son is such a great kid. People stare, point, make comments, and he just tells them, "oh, that's my mole". I find myself getting mad when I see people point and talk about him, but he never gets mad. He never tries to hide it, and has never said to me that he wishes it wasn't there. He has totally accepted it is part of him.
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May 07 '04
6:53 am PDT
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It's Hard not to Stare (Reply to this comment)
by barakah59
I often find myself staring and never know what to say.
I don't mean to be cruel and if I had such insight as to the pain and suffering these things bring I might say just the right thing to make their day. A few stumbled attempts and I'm rebuked "I don't need your Pity Love sir."
Is what I unfortunately hear.
Lord Jesus teach us to be accepting and kind, Amen
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Nov 29 '03
9:00 am PST
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Re: Such a strong and locing family . . . (Reply to this comment)
by Mimi369
Isn't it amazing what we learn from the internet! The night that Candace was born, the internet is what helped me to learn about this rare disorder. Hopefully some of my essays are floating around the search engines to help others.
Today was an especially great day for Candace when at the laundrymat, two little children ran up to her and asked her to come play with them!! They played and played for 2 hours!!
Her self-esteem got a real boost today!!
Mimi
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Sep 21 '03
5:52 pm PDT
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Such a strong and locing family . . . (Reply to this comment)
by pilarzmom
Candace is so blessed. Thanks for the very informative essay. I know of a little boy in our neighborhood with a facial one as well. I didn't know what it was until I read about it here.
God bless you and your family,
Peggy
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Sep 19 '03
7:00 pm PDT
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Re: She Didn't "Become" Beautiful!!! (Reply to this comment)
by Mimi369
Katy!
Hugs to you. Thanks for you kindness and understanding!
mimi
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Jun 16 '03
8:16 am PDT
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Re: Thank you (Reply to this comment)
by Mimi369
Congratulations on the birth of your baby! You are indeed blessed to have your very beautiful, very special baby!
Please email me privately and I can supply you with several resources for obtaining support from parents of Nevus babies, as well as much needed information on this very rare birthmark. ~~Mimi369@aol.com~
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Jun 16 '03
8:14 am PDT
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Re: She Didn't "Become" Beautiful!!! (Reply to this comment)
by katybrighteyes
Mimi, I couldn't have said this any better. AJ's title and comment wrap up my feelings about Candace and her family. Please keep us posted, and I'm wishing much success in the upcoming surgery for the always beautiful little Candace.
Katy
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Jun 15 '03
2:21 pm PDT
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Thank you (Reply to this comment)
by delsinger
I just gave birth to a daughter with a Congenital Hairy Nevus and I am still looking for an outlet on how to deal with this. My biggest concern has been how to raise her so this condition does not interfere with her ability to have a happy and healthy life. I would be very interested in knowing when the Maury and the Lifetime show was broadcast to see if I can somehow get a copy. I'd also be interested in knowing more about what you did to ensure she had a healty self-esteem.
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Jun 01 '03
12:18 pm PDT
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Re: hey there... (Reply to this comment)
by Mimi369
Tom,
I will someday soon write an expose of the Maury Povich show based on our experiences there. Believe me, what you see on TV is not what truly goes on. Sad indeed.
I am adding you to the growing list of underwear reviewers!!
Thanks for reading and commenting on a subject that is so dear to my heart!
God bless!
Mimi
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Apr 27 '03
8:00 am PDT
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hey there... (Reply to this comment)
by sleeper54
..
Hey Mimi,
Found this while reading your user-page in response to that threatening...err, strike that!...kind invitation to write about my . . .uhh, underwear.
Very..nicely..said !!
I am not a Maury watcher but I would have loved to hear more about your family's courageous efforts to enlighten those of us who do, unfortunately, like to see the surface rather than the person, spirit, soul underneath.
God Bless all of your family...
...tom...
"Babies are necessary to grown-ups. A new baby is like the beginning of all things - wonder, hope, a dream of possibilities. In a world that is cutting down its trees to build highways, losing its earth to concrete... babies are almost the only remaining link with nature, with the natural world of living things from which we spring." —Eda J. Le Shan
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Apr 26 '03
7:09 am PDT
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Re: Sweetie... (Reply to this comment)
by Mimi369
(((Huggggsss)))
Thanks so much, Char!
God bless,
Mimi
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Apr 13 '03
6:17 am PDT
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Sweetie... (Reply to this comment)
by char.mike
Candace IS a beautiful little girl with a very beautiful family. I wish there were more people with your kind, wise and loving spirit in this world! Hugs & Smiles, Char
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Apr 12 '03
8:42 pm PDT
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Re: She Didn't "Become" Beautiful!!! (Reply to this comment)
by Mimi369
AWWW.....Thanks so much, AJ, for this wonderful comment. Yes, it's true, Candace is a beautiful child inside and out. Her surgeries were done for medical as well as emotional reasons. We pray that she will understand our decision to do this when she is older.
Thanks!
God bless.
Mimi
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Apr 07 '03
11:49 pm PDT
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She Didn't "Become" Beautiful!!! (Reply to this comment)
by AinsleyJo
I can tell by reading this that Candace didn't "become" beautiful after her surgery but, instead, has been beautiful her entire life--and much of this is thanks to you and the rest of your family!!!
Hugs!
AJ :o)
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Apr 05 '03
1:14 pm PST
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Re: Yea! (Reply to this comment)
by Mimi369
Aww...thanks so much Suzanne and Shantel. Candace is doing great and is one terrific and beautiful child, both inside and out.
God bless,
Mimi
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Mar 19 '03
1:37 pm PST
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Glad (Reply to this comment)
by shantel575
to hear that things are going so well for Candace! She is just as blessed to have you and her mother as you are to have her :)
Shantel
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Mar 19 '03
1:08 pm PST
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Yea! (Reply to this comment)
by sblaydes,  in Kids & Family
Yea for Candace, your daughter and yourself! :) All I can tell you is that Candace sounds like one incredible and quite beautiful little girl. What a blessing. :)
Suzanne
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Mar 19 '03
7:14 am PST
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Re: I am so happy (Reply to this comment)
by Mimi369
Thank you so much, Lorace!
God bless,
Mimi
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Mar 19 '03
7:10 am PST
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I am so happy (Reply to this comment)
by lorace
That Candace was sent to such wonderful persons. And that Candace has helped you become even more wonderful. What a heartbreaking and yet inspiring article this is. You shared it so well.
I understand the pain of people's reactions, having a grandson born with a deformed arm and hand. Our concern at his birth was with how he would be accepted and/or treated by others. And even to this day, the pain remains, although he is a young man. But what a young man!
Thank you. I am so thrilled to know the good that this little gal is bringing to the world.
Bless you and I'm so glad I read this, Mimi.
Lorace
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Mar 18 '03
11:04 pm PST
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Re: I have thought of her often - (Reply to this comment)
by Mimi369
Kimm,
It's a warm fuzzy feeling knowing that you and so many others have thought of Candace! It's been a difficult road for all of us and I am so pleased to report on her progress. One of these days soon I will write my expose on The Truth About Maury.
God bless,
Mimi
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Mar 18 '03
4:44 pm PST
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Re: A Reason To Believe! (Reply to this comment)
by Mimi369
((Deborah))
Thanks for your comment. I, too, believe that God has a purpose for everyone and everything. Candace definitely was brought into our lives because God knew that she would be loved and well taken care of.
God bless,
Mimi
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Mar 18 '03
4:41 pm PST
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I have thought of her often - (Reply to this comment)
by KMINER,  in Kids & Family
and saw her and you all on the Maury show - God Bless - Kimm
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Mar 18 '03
11:25 am PST
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A Reason To Believe! (Reply to this comment)
by ruby950
I go thru life believing that there is a reason for everything. Perhaps Candace's reason is to teach the world to be a kinder, gentler place. She has been blessed to have been born into your beautiful family. How lucky for you all. Thank You for writing, sharing, and inspiring me today.
I will forever more think about Candace!
My best,
Deborah~
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Mar 18 '03
5:16 am PST
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Re: It broke my heart to (Reply to this comment)
by Mimi369
Thanks, Melissa, for your precious words. Overall, things have gone well for Candace. She still has quite a journey ahead, but at this point, I think that she will be able to handle anything that comes her way.
God bless,
Mimi
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Mar 17 '03
11:10 pm PST
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It broke my heart to (Reply to this comment)
by bops_mom
read your sweet little granddaughter would hide her face, people really can be horrid to others who are not "normal". I applaud both you and your daughter for showing and teaching her that she is beautiful and how to stand up for herself - many "normal" children never get that point.
I thank you for sharing this, I was so happy to read what has been going on with little Candace and am thrilled at how well things are going.
best,
Melissa
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Mar 17 '03
11:03 pm PST
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