POZ Community Forums
Main Forums => Positive Women => Topic started by: minismom on November 10, 2007, 02:48:21 pm
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Not sure exactly where I should be posting, so kind of testing the waters. If you read my post in another forum, you can skip this one. It'll say pretty much the same stuff. I'm the mom of a 7yr old dd (guess she qualifies as a "woman"...lol) who was born HIV+. She had a really rough time for the first 21 months of her life. Her VL was so high that the test would just show the max number it could count followed by a +. In Jan. 2002, she had a genotyping done and has been undetectable since June 2002. She's now dealing w/ secondary effects of HIV on her developing brain and the neurotoxic meds she's been on since birth. She's been dx w/ CP, diabetes, her liver is wacky, her triclycerides are through the roof (284 as of last Tuesday), she's also dyslexic, apraxic, and has multiple learning disabilities. She was just tested for sickle cell, rheumatoid arthritis, and has a MRI Jan 2nd, 2008, to check for inflammatory demylenization neuropathy.
She knows she is HIV+, but finds it hard to understand why she can't just tell it to everyone she meets. She's a real sweetheart. We're worried about her future, though. I'd like her to be married if she wants, and have kids if she wants. I'm just scarred that no one will be able to get past her virus. I'm also scarred that as she gets older that she'll go down some self-destructive path because she loses hope. Any suggestions? Has anyone else been in this predicament? Honestly, right now her disabilities associated w/ her HIV are harder to deal with than the fact she's HIV+. Am I overthinking things, or just plain crazy? ???
I"m glad I"ve found this site. Looking forward to getting to know positive women who can help me stay positive about my positive little woman.
mini's mom
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Hi Mini's Mom
I didn't see that you posted here too so I welcomed you on the Living with. I do have some idea which drugs cause the troubles (some of) but there are more informed members than me and you have already gotten some good answers. Anyway about what you wrote here, no one can obviously say... but there are kids born with HIV who are having normal lives, dating, finding partners... I want to attach a link to part of a documentary from the BBC in which there were also included interviews with 2 young women born poz.
http://www.youtube.com/watch?v=GwIj65hBoRw - the interview with the girl start at 01:45 minutes if you want to scroll to it or just watch the first 2 minutes till it starts.
This 2nd interview starts afte 01:08 minutes or again just watch from the start - the link: http://www.youtube.com/watch?v=VGmAfoUbFKU
There are more example of kids born with HIV or getting it at a young age who are in relationships, for example Shaun whos write a blog on the Poz website which is linked to from the forums' homepage. i don't think he writes much about it there but he has a book about it, which I haven't read. Anyway he seems to be leading a fulfilling life with his wife.
I know that it is impossible to generalize from others to ourselves but I thought it would be nice for you to see how these 2 young women are doing from the "feminine" aspect.
I don't think you're crazy at all, I think you are a wonderful mom.
All the best to both of you,
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Hi MM:
Welcome to the forums. I haven't read your thread in the "Living With" section. This is the first place I check in when I come on the forums.
I don't know what apraxia means, if you could please explain a little. Wow! What a challenge for both you and your daughter. I would suggest counseling. There's nothing quite like a good therapist. You might have her in it already. I realize sometimes it's hard for a little one to go to therapy, but I think it would be a good start.
One thing I always try not to do is project about the future. I know it's easy to do, especially where kids are concerned. I have a daughter, but she's 23 and HIV-. Maybe you could benefit from some therapy yourself. I'm not saying that to down you, by any means. I've been in regular therapy since 1991 with the same therapist. So he knows me pretty well. But, as far as the "what if..." thing goes, please try not to do that. She could well grow up to lead a normal life and do normal things. And know that anything that comes up, you'll be able to handle at that moment. When I just take a day at a time, or a couple days at a time, I can handle it. It's when I start worrying about the future, that life becomes unmanageable. It seems like you have a good head on your shoulders, and that you're doing all you can for your daughter. I can't imagine what it's like. One of my sister takes care of special needs children in her home and has a son who has CP, is blind and severely retarded (well, a stepson). I know it takes a lot of patience and courage (and love).
Know that we are all here for you, whatever your situation is or whatever comes up. There are a good bunch of people here on these forums. Very supportive and loving. And some are quite knowledgeable. So please continue to check in here.
That being said, welcome! I look forward to hearing more from you.
Peace-
Betty
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Thank you for your encouragement, Betty. Apraxia is a close cousin of dyslexia. It has to do with the way the brain does, or doesn't, interpret information. A neurologist said it's like hearing people speak french. You know they are speaking French, but have no idea what they are saying. So the brain knows that it's supposed to be doing something - just not always what it's supposed to be doing. It effects motor planning, memory, and every other cognitive function. Hope that helps. I'm sure I've made it clear as mud :-\
Mini is actually doing well. She just says the doctors are whacked. Her biggest issue is having to be on a diabetic diet. It didn't bother her when she was dx w/ diabetes (age 4), but now at 7 it's starting to get to her. We just talk to her about it and give her one of her alternatives. Most of the time she tends to to better than mommy (and daddy).
Mini's mom
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Well, I can sympathize with her having to eat a diabetic diet-I'm diabetic myself. I was dianosed with it like seven or eight years ago. What happened was, I was in a coma and the feeding that they were giving me had a high sugar content in it and it caused my pancreas to shut down. So, I've been diabetic ever since. But only recently have I been starting to take care of it. So I've got a ways to go.
I meant what I said, we're here for you. I hope our support helps. It sure helps me.
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Mimismom
I have to give you kudos, I know you are going through your own personal hell dealing with what your daughter has to go through and as a mom you just want to make it all better. I am a mom myself, and as far as I know All of mine are negative,I was diagnosed when my 4 year old was 2, so I still worry every day. You mentioned that you are concerned that your daughter will chose a self destructive path later in life, well as a child I grew up in foster care...(long story) I got HIV from my second husband and am currently going through a divorce from him due to abuse and his drug use. (to the point Sherry .....sheesh) anyway I guess want I am trying to say, I have always lived my life...ups and downs remembering this one thing.......If it were not for everything that I have been through I would not be the person that I am today. I think I am a pretty strong person, and I attribute it to everything I have been through. Just always tell your daughter that no matter what she is a special person, and she is strong. She became strong by jumping all of these hurdles she has jumped so far in her young life, and as long s she keeps jumping she will grow up t be one of the strongest women you know!...Well i didnt mean it quite like that but you get the jest of it.
Sherry
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Thank you for your very kind words. She's a strong little girl. 7 is an awkward age, though. Meds, drs, therapists, blood work, they've been a reality in her life since she was born. She's starting to notice that not EVERY 7yr old has meds, drs, therapists, and blood work. She's starting to complain some about her meds - kaletra and Zerit are liquid and burn like hell going down. Susteva are pills (100 & 200 mg). She asks why her sibs get to do things she can't, why she hs to take meds, and why her legs don't work so well. Most days I'm at a loss for words.
mum
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Yep! sounds like a 7 year old.
Welcome to the forum Minismom
Wendy