New to Bodies Like Ours

[PitterPat]

Dear all: My name is Pat. I'm the sole support system for a dear friend of mine whose son was born 11 years ago....diagnosed a true hermaphrodite. You'll have to forgive my ignorance of the abbreviations and medical terminology used, but I'm learning.

I'm hoping to find some other intersex children for Josh to communicate with regularly..... well, and his mother could use a network of friends who are dealing with this.

You see, Josh has been raised in a very small rural town where the ole keep it a "deep dark shameful secret" has been the mode of operation. Josh' mom is trying her level best to understand his condition, but for 10 years now there's been no follow-up with medical professionals, etc. To make matters worse the boys "father" (and I use that term very loosely) is probably the worst part of this. He uses terms like freak and deformed when talking to Josh, and just recently convinced dear little Josh that he was an experiment and the only person on earth like this. Grrrrrrrrr You can imagine my disgust, especially after having spent an entire day with Josh visiting the pediatric surgeon and children's hospital, all the while trying to convince him that he was NOT a freak but an incredibly wonderful gift of God.

Anyway..... to help you feel more comfortable with this newby among you, my name is Pat and I'm an Episcopal priest's wife. I'm a mom of two college aged children, a potter, and wife. I've spent the past two years trying to assist Josh' mom with her legions of personal problems, but found that the one most important thing needing addressing was Josh' care and well being. He was falling way too far down on the list of priorities.

I hope you all won't mind me being on this forum. I hope to gain as much knowledge as possible with the help of you all.

With warmest regards and great respect, PitterPat

ps: sorry for cross posting.

[Az1]

Hi ,
I am Muhoe I do not list my real name only able to get that from Betsy. I have been on the internet for a long time seeking knowledge about the so called dark secret.
I was born IS ,I never had any positive knowledge ever given to me by anyone growing up.
It was always stressed that I was a boy and I was not to act like anything else. I was never told that I was different than my peers. I was never told that I would grow up seeking answers I would never find. I have gone to the Holy one and he has lead me thru all of this.
I find love and solutude within myself and the guidace of my faith.
Josh will be a very lonely person if the critisim continues.
It did for me , my brother made sure of that.
I was very scared of others in life who would not accept me.
I thought and still do that the world is not ready for IS individuals to have a say in their world.
I hope you find the answers you seek, you could always ask for guidance.
Have a nice day and thanks for joining Bodies like Ours.
Muhoe

[PitterPat]

Thank you for your reply of support. Yes, I fear Josh has a very difficult road ahead of him, more as a result of his threatened father and sister. It pains me to know he'll struggle unnecessarily, but there's always hope. I'll give it my best and hope that I've halped in some way.

Kindest regards, and God's peace be with you,
PitterPat

[claraJane]

Welcome Pat,

Hope you can find the help you need here. I'd be happy to try to find medical information for you. Or pray for specific requests (xyTurners@comcast.net). Glad that you're trying to help.

claraJane
46,XY/45,X (Mixed Gonadal Dysgenesis - True Hermaphrodite - fwiw)

[Betsy]

Pat,

Welcome to Bodies Like Ours. We have several parents/grandparents who visit frequently and I hope that you will hear from some of them soon.


Thank-you for standiing up for Josh. While I don't know if he recognises it now, one day he will and will be grateful for that. Secrets in any family are bad and destructive influences.

Again. welcome and I hope you find the support that Josh needs so badly.

Betsy

[Emi]

<< I'm hoping to find some other intersex children for Josh to communicate with regularly..... well, and his mother could use a network of friends who are dealing with this. >>

When I was growing up, my mother would take me to this house regularly where there was this boy who I knew had something in common with me but I was afraid to talk about it. Well, I was afraid to communicate with him at all, because I was ashamed that he knew something about me like I knew about him that neither of us were allowed to talk about. Looking back, I think my mother was trying to get support for herself by visiting another mom of a child with the similar "abnormality," but I hated visiting him. It didn't necessarily help me feel better to interact with another child who shared the same "deep dark shameful secret" with me, as long as it was treated as a "deep dark shameful secret" in my family.

The way you describe Josh being treated makes me cry. It's extremely important that he has someone in his life who will always remind his how precious and wonderful he is. Based on my experience, though, I'm not sure if having Josh meet other kids with intersex conditions at this point would necessarily help... What do other people think?

Oh, are Josh's parents members of your congregation? I am not religious myself, but I grew up in Jewish and later Baptist households and I feel there were many things spiritual leaders and communities could have done in my childhood to support me and my parents... Even the "father" who says horrible things to Josh needs to get support, because I believe he's saying these stuff out of fear, shame, and stigma that he feels as a father of a child who is "different."

[Janet]

You don't have to live in a small town to feel the shame of being different. Some of us were raised in the biggest cities and still felt all alone. However, Josh should be kept safe from small town bullies (whether they're related or not).

Ignorance is no excuse for bad parenting, and Emi's correct: Josh's father needs help
If he doesn't change, every interaction he has with Josh will leave another terrible imprint.

If Josh's mom is on the internet, have her stop by here. Many of us have virtual friendships that evolve out of being here for each other. For most of us, it provides the most meaningful discussions we've ever had about the topics of feeling different.

Josh's mom should also preview www. queerbodies.org, our youth site. Josh may be too young for it, but his mom will get to see other IS kids that are talking about how this all feels to them.

Just by being here, we know you are a good friend and a compassionate person.
Thanks for helping Josh and his mom.
Janet

[Andi]

Hello Pat. It's nice of you to be doing this in an effort to help out your friend and her child. I don't even know what to say about that father you mentioned. I just can't put into words the contempt I have for someone like that.

As for meeting other IS kids: As far as I know, most kids that age just want to fit in & would not appreciate having any 'differences' pointed out. I think the thing he probably needs most is to know there's nothing "wrong" with him. Other posts in this string have already given suggestions that are as good and probably better than any I could think of.

And lastly (for now), welcome to our little forum Pat.

Andi (xx/xy)

[Spencer]

Hello,

My name is Spencer. Im new to this forum and I hope I can be with you for some time to come. I couldn't help but be touched by this post.

I think it's important to remember that the father may be reacting out of ignorance of his childs gender, the fear and embarrisment he thinks will come with it...and, maybe, that it was a genetic fault passed on through him. When my nefew was born, all of these thoughts came to my brothers mind. His son liked to play with dolls so there HAD to be something hereditary passed on..after all, his sister looked like a brother and he couldn't deal with that. My nefew is grown now. There's not much love between them.

There was noone that my mother could turn to that knew anything about what her child was going through. All she knew is how much she loved me. She finally found a friend..like you..who was there to help her learn so she could protect her child through damage control. Neither of them knew anything about what they were looking for..but they found the information togeather. The woman was a Godsend and my mother can't talk about her today without tears coming to her eyes.

It is a wonderful thing that you are there for the mother of this sweet little child. I dont think you realize how much help you are to her. A mothers love can help to heal spiritual wounds.

I'm an intersex catholic priest.( please don't ask me how I managed that ) Our creator made us and he doesn't make mistakes. Your faith shows by the love you are giving to this child and his mother and I commend you. It is vital that this mother has support. Sometimes it feels like you are fighting the whole world and you begin to question God too.

But, by going through what we do makes us more understanding of other peoples pain and, down the line, we help others. You are this mothers lifeline and you are in my heart and prayers.

Spencer

[GoldenVoicedGal]

Hello Pat. You don't know what a blessing it is for Josh & his mom to have you as their sole support system right now. Many of us have grown up dealing with this alone & our parents with nobody to talk to. I salute you for being Josh's advocate.

As others have said, whether a small town or a big city, the issues are the same. I live in a small city & was born to well-educated, cultured, sophisticated parents & my intersexed status continues to be the "deep dark shameful secret" in the family for going on 39 years now. I'm disgusted but not surprised by Josh's father's words. My mother, in a moment of anger, once blurted out to me "You're a mistake". I can't read minds but with Josh's father, I'd guess there are deep feelings of inadequacy going on inside which he deals with by projecting them onto his son.

Keep reminding Josh that he is indeed a wonderful gift from God & a human being with as much value in God's eyes as any other. It must be hard for Josh to endure the same awful comments from his father day in & day out, so he needs you to give him a true & right perspective that he will never forget. We are mentioned in the Bible about 12 times, referred to as "eunuchs", & God accepts us just as we are, even if the world doesn't. Romans 8:38, 39 & Isaiah 56:3-5 are passages that continually give me strength.

I'm Sarah, 38 years old, never married/no kids & also Episcopalian. I'm fairly new here myself. Welcome.

[Betsy]

For those who belong to a religious community, you may want to order a copy or two of "Made In God's Image" available at http://www.madeinimage.org. It's primarily directed towards inclusiveness in welcoming congregations. I consulted on the intersex part and am happy to say the author did a great job with it.

Betsy

[Janet]

"Made in God's Image" by Anne Thompson Cook belongs on the bookshelf of every religious leader.

We shouldn't have to seek out welcoming congregations in order to feel welcome. Thompson cook explains things on a level so that even those that don't know about intersex will be compassionately informed, and will then be able to truly help.
For the new parents of an intersex child who often seek solice in their religious foundations, no publication could be more valuable.

and good news... 'Made in God's Image' is an affordale booklet: $5.95 each but if you order 10 or more the price reduces to $3.50 (plus shipping and handling). They'd make great gifts for the believers you knowthat have trouble getting their arms around this topic.
Janet

[PitterPat]

Sorry it took so long for me to get back here to reply.... Life seems to get rather hectic from time to time. THANK YOU all for the kind words and support. As you all well know, support and understanding is rare to come by.

Josh' mom is doing her level best to communicate with doctors and stay on top of caring for Josh, physically and mentally. This is a huge challenge for her, mainly since she has a lot of her own issues to deal with, but she's hangin' in there!

Josh was taken to have some kind of test done on his bladder. Well, they attempted to put in various size catheters and the procedure was so painful that his mom put a stop to it. They all agreed that maybe the pediatric surgeon should perform the test. Another doctor (a woman, who seems very compassionate towards Josh' condition, whose office is 2 hours away, is going to try to do the bladder test with a sedative). The new doc says that the sedation will help, but he may still feel some pain. <sigh>

Josh' mom is duly concerned about this "pain" factor. I'm more convinced that she needs to be talking with folks like you who have either helped a child through the medical nightmare, or have gone through it yourself. I'm sure you all could help her help Josh through this. The test must be done since it seems Josh may have some scar tissue built up in his urethra.

The only thing I knew to tell her was that he is naturally going to resist anything that may cause him pain or discomfort, but that he has to be strong and try to get through it. I also told her that it's vitally important that she express her concerns to any doctor going to work with Josh, that medical procedures be made as tollerable as possible, since it seems like this will not be the one and only test or medical procedure he has to endure.

Yes, she and Josh attend our church. She and "the father" are seperated... no divorce since she can't afford it and he's perfectly content existing in the status quo. I understand he most definitely need counseling!!! But, there's no way he'll get it, barring a miracle! I told Linda (the mom) that Josh will need to learn, through extensive counseling, that even folks we love the most can say the most dreadful things, but we DON'T have to buy into them!

I'm going to try to get Linda to come on this forum and communicate with you all. She really struggles with things cognitively (sp?) and emotionally. She loves Josh completely!

I can't speak for other parishes or churches, but you can be sure that my husband is most supportive of Josh, and tries to go out of his way to treat Josh with a little more extra special care when Josh is in church. We've also assured Linda that her place is in the church where she can be a part of a loving and supportive "family"... even if no one else knows about all she endures.

Must get back to work..... I appreciate so much all your loving kindness towards me. Thank you!!

Much love and blessing to you all.... Pat