My name is Jennifer and I have congenital hydrocephalus

[jennifer]

My name is Jennifer, I am 23 and I have congenital hydrocephalus. I probably don't have the problems some of you have, but maybe I am trying to make friends and don't know where to start.

Jennifer

[laurensmom]

Again?????

[DystoniaGal]

Again?????

My exact thought Deb. :D

[KathiDG]

My exact thought Deb. :D

Here we go....:rolleyes:

[Austinsmom]

Hi Jennifer,
How are you doing? good I hope.

to the others of you...Jennifer, is 23 and has congenital hydrocephalus, and maybe other issues, I know if my son came here repeatedly and ask the same question over that you would realize he may be at this level and only at this level. and that you would BE NICE.
back to you Jennifer
Did you ever look into going back to school. Austin is doing good in his second semester of college. I have been busy and not on this site much
Hope all is well,
Deborah

[Penny W.]

Hi Jennifer.

A thought I had is could you perhaps look in the papers or the phone book for non-online activities that would let you meet people in real time.

If you'd rather a medical group, have you joined the Hydrocephalus Association? They have conferences where you can meet others with the same condition. I'm not in the US but there are people here who are, and they might have been to some of the events so they could tell you what goes on there.

I hope you find something soon.

Good luck.

Regards,
Penny.

[CoolAngel28]

My exact thought Deb. :D

Me too,here we go again!:rolleyes: :rolleyes:

[CoolAngel28]

Again?????

Hey,we need to support her,maybe she really does need us.

[Nat Hyland]

which might help others to help you. What DO YOU really want to talk about? We all have different interests and obligations outside of this chatroom, so unless we know what you want to talk about, I think we all find it a bit difficult to respond to you appropriately.

While the majority of people either know someone with hydro, or have hydro themselves, we don't all talk about just that necessarily. You will notice from reading the posts that we talk about all types of things happening in our lives. Think of it as having a "virtual conversation" with someone. That is, while you are not able to see who you are talking to, you can still "talk" to them. It's a bit like talking to a friend on the phone when you can't see them.

I hope that will clear things up a bit for you Jennifer, as well as ease a bit of the frustration it is obvious some of the others are feeling. Finally, we all want this to be a positive environment for everyone. While we are prepared to listen when things aren't quite right, we also want to be able respond in a positive way.

So try and think of something that is making you happy at the moment, and let us be happy with you. ;)

Nat.

[AMBush]

Hi, Jennifer...

I hope things are going well for you right now. I'm taking a break from studying and watching my daughter, Marijke (pronounced Muh-RY-kuh), who has hydrocephalus, play Lego Star Wars on the Playstation. She really gets into the game, really excited, yelling and talking to the screen and the characters while she plays. She loves to read, too, Harry Potter and The Lord of the Rings are her favorites.

Marijke's hydrocephalus is the result of bleeding in her brain when she was only a couple of days old (she was born very prematurely). In addition to the hydrocephalus, Marijke has some brain damage because of the bleed. She has a really hard time writing, but she's excellent when it comes to typing on the computer. She very imaginative. She really likes Buffy the Vampire Slayer, but she doesn't get to watch the DVD's very often because she gets in trouble at school for trying to act out the stories.

Marijke's only 13 right now. I have a feeling there is a lot I could learn from you, about what sort of things she should expect as she gets older. Send me a PM if you'd like to talk, or if you would be willing to share with me some of your experiences.

What sort of things do you like to do? What are you good at? What things are hard for you?

I'm looking forward to hearing from you again...

[Silver Swan]

Dear Jennifer:

At last I have found you! I sent you a PM today in answer to two you sent me quite a while ago. I hadn't noticed that I had PMs - don't usually look at that box on the top of the site. How are you doing? Have you found some people to write to?

Shirley H.

[laurensmom]

I'm sorry if you all feel I was out of line, but this was about the 3rd or 4th time the same post over the last 6 months or so....maybe Jennifer if you could start a post letting us know what is going on in your life-how things are going for you, how your job is going, you health, school, etc. we could all be more supportive....

Sorry again,

Debi