my daughter is not helping my husband's condition she is making it worse

[amandabirke]

My daughter is 4 , she used to be soo good and she is a daddy's girll now started when she was 2.  It started because he would do what ever she wanted regardless of what i said.  i tried to tell him to stop it.  He was going to end up making things harder for me in the long run, but he refused and NOW he realizes just what i meant and how bad the situation is.  she throws temper tantrums and screams and cries I WANT U DADDY aLL DAY LONG!~  I haven't been alone with him in a very very very long time, and when she goes to bed , he goes to bed cuz she ran him ragged all day.  I hate this, when we do get time alone he stresses out about her being gone that he has an episode and passes out , so i am damned if i do damned if i don't.  I am so lonely i can't take this anymore .  anyone have thoughts on how to handle this problem?

[ChiariWolf]

It is easy to feel the pain in your words. Perhaps you daughter also feels that same pain. To her this is daddy that is suffering in a way that she can not understand, in a way that he doesn't understand and quite frankly Mommy most likely has a clue but is having a hard time understanding. Is it possible that in fullfilling the role of mommy and wife/caretaker you've found it hard to take time to care for you? Sometimes that may mean taking time to cry, time to find reading material to make you smile or for my wife it's taking time to read her Bible. She will be the first to tell you that her bible reading time is what gave her the strength to cope with all that life dealt to us through the worst of it.

My wife's mother did tell her to leave me because of all this medical garbage. She flatly refused got very upset then later shared scripture with her as to why that is the wrong answer. Not trying to give you a sermon, but frankly that is the only real answer you will find for some of the problems you are speaking about. Even the one with your daughter, no doubt she is a very sweet child reacting the only way she knows how. Perhaps your husband and you need to speak frankly with him about how you feel in all this in a kind manner. Yes, it may make him feel worse for a time. But let me ask you a question; which would be worse - To suffer in agony until you can't be the wife/caregiver/mother that is your hearts desire any longer and you crash? Or, to open the lines of communication no matter how difficult, you will both suffer for a time but in the end have a better understanding of each other and thereby a more understanding daughter which can be brought about by you both being in agreement and discipline accourdingly?

Amanda, this whole thing will continue to rip away at your heart until it's too late if you don't get him help from a Chiari Specialist right away! From some of the things you've posted it sounds as though he really needs to get 'real' help right away. Not trying to worry you just being frank.

So stop, breath deeply, say a prayer and go take care of yourself so that your body will be able to take care of everyone else. Remember, bucket with holes in the bottom must be refilled every now and again otherwise the horse can't drink from it. :-)

Take Care,
Wolf

[*Stormy*]

I'm so sorry that you feel so alone...all I can offer is that you aren't alone when you come on here :)

As for your daughter, I have a 3 year old and I know what you mean. Since I've been sick it has been so tempting at times to just give in b/c it is so much easier. They scream and my head feels like it's going to blow up...so I want to just not have to go there. However, kids will find any little opening and use it to their advantage. The only way that you can really change this is to set down some rules and consequences and then both of you stick to it no matter what. In a few days your DD will see that you mean business. For tempertantrums, I just ignore them and I tell mine that I won't speak to them about what they want until they can speak to me in a calm manner. Your DD is 4 so she should understand that but if she insists on having a tantrum, then let her, just don't give her the audience that she wants. I imagine with your DH being so sick that she is just trying to get her bit of the attention but she has to realize that there are wrong and right ways of going about it.  Believe me, I am far from a perfect parent but I have 3 boys and I have seen what works...it's just a matter of actually doing it :) It will be a very long hard road at first but worth it in the end. Is there any kind of parental support where you live? A lot of them you can take the kids too so it fullfills their social needs and yours as well!!
I don't know what to suggest about the passing out....I would get his files to a Chiari specialist ASAP! Don't lose hope...I know how tough it is but you will see a light at the end of the tunnel..

Carolyn

[amandabirke]

OH and by btw he has chiari 1 malformation, he has been having what we call them episodes all week, every night!! i posted earlier last week for the first time weds i believe . i just am having a very hard time , when he has his episodes they get to the point within ten minutes of starting he just passes out and , again i'm all alone. i need to have someone .  my family is a bunch of wacko's and think i'm the most disappointing thing that has ever happened, and his family is just plain ignorant!  friends , well i have none they all have disappeared or are just as ignorant.  So  I have noone, to even talk to. i can't get a hug .  I haven't been away in 17 yrs and I think i'm going to lose my mind all together. as i write this i am shaking , i'm so upset.  I can't cry to my hubboe cuz that makes things worse for him, i can't cry to my mom  she just yells at me and say's leave him , when i have no where to go.  I can't work cuz i have to watch my hubbie and my daughter.  If i coul control his episodes to a point where he woldn't pass out it would make all the difference , but so far i haven't found anything or he hasn't takin anything tht controls that part. anyone with suggestions or anyone that can relate PLEASE notify me?