Has your Ataxia caused any disasters in your family like mine has? I guess I won’t say that it has exclusively been due to my Spino Cerebellar Ataxia.In 2008 My husband freaked out and had an affair(s). One yieled a child. It was the year my dad passed away from complications due to his Ataxia. My husband was also traveling Mon.-Thurs. for work.
We’ve taken a lot of steps towards healing. Gone to several retreats and seminars. Another of my many criteria for staying together was to honor the child he’d created. We have her 40% of the time unti she’s kindergarten age. I love it when she is here and I love it when she is not(I can sleep).
I know that God sent her to me. 8-10 yrs ago we were denied a child due to my condition. I have two sons and always wanted a daughter.
You are clearly a generous and gracious person. God bless you!
I've not had anything that tough to deal with. My husband and kids have been supportive. My husband has been particularly supportive. He has had to take on so much with me having ataxia. My parents and siblings don't "get" it and aren't terribly supportive.
It's taken two years for me to get here Julie. We are and were the last couple that someone would guess would go thru such a thing- in fact nobody could believe it.... until they met Bella (the child). I don't mean to scare anyone. Just want to see if I can help anyone who might be going thru something similar. Or at least other Ataxians can see they don't have it so bad.
I'm glad your family and husband are supportive. It's always good to keep an eye on everyones emotional state and talk to someone if you need to. The counselor my husband sees now is helping him with modifications and plans that he will have to make as well as expectations for the future.
Thanks for your kind words.
Tiffinay
Julie Hahn said:
Tiffinay,
You are clearly a generous and gracious person. God bless you!
I've not had anything that tough to deal with. My husband and kids have been supportive. My husband has been particularly supportive. He has had to take on so much with me having ataxia. My parents and siblings don't "get" it and aren't terribly supportive.
As a breadwinner It’s very difficult to
Adjust to ataxia, I no longer drive
And have no income so my wife has to do
All the household duties and look after 3 kids!
My family have had to adjust!
Regards
Barney
My ataxia is relatively mild so either my family doesn't believe me or thinks I am nuts . I am afraid to complain to my parents-- Holocaust survivors in their 90's-- although my Mom noticed something wrong with my walking and balance. My father thinks it's all psychological and thinks I should leave these sites "because there is nothing" with me. My husband (#2) is baffled and thinks I am lazy and I should go to work. He wants to travel, go to hotels, hike and enjoy life. I think he will have an affair if I become totally useless to him. He wants to retire "because I did". My grown kids think this is bullshit from divorceland and claim they have their own issues and should have never left their father . My ex-husband is happy and keeps suing me..All in all, everyone is unhelpful and I have to deal with this my own. No one knows what this is, or ever heard of it. N
After all you've endured, I'm glad that you are able to get comfort from this child. My immediate family are caring and considerate but only this morning my daughter said 'don't put everything down to Ataxia'. So now I wonder if she really understands the condition.
My husband cannot deal with my condition very well at all. Honestly, I must say he is very unsupportive. Others in my family are supportive and understanding. I have a six year old daughter (I got ataxia right when I had her) and she is so wonderful. She is so helpful, and supportive. But my husband, he is having a very hard time with it. Children can be such a blessing.
We are all very supportive of Cassie. Her brother keeps getting her out and my wife makes sure she eats well. I keep her exercising and we go walks with my sister with the dogs. My brother is never in touch to ask about her. I dont know if its coz he is a jehovah witness and i am an atheist.
Hi butterfly and Neta what is wrong with the men in your life, do they not know what empathy and careing about you both mean. As if things arent hard enough. They dont deserve you both. Hugs from the Punks
Thanks for your support. However, I think one of two things can be at play. Either a general kind of denial i.e. if no one ever heard of this, it doesnt exist. Or, there is a tough love kind of approach, The more I "force" her to do this or that, the better she will be. . Of course there is third option, which is selfishness. I am married to husband #2 and maybe he feels that he didn't sign up for this.. I do not know what the answer is or why these men are so indifferent but I suspect, that I am right. I do not know the other woman (Lori) . Tim e will tell what the level of the commitment is. Neta Punk said:c
Hi butterfly and Neta what is wrong with the men in your life, do they not know what empathy and careing about you both mean. As if things arent hard enough. They dont deserve you both. Hugs from the Punks
Hi Tiffany, Sounds like that little girl has been a godsend in your life! You are truly wonderful to be so accepting and loving! Glad you and your husband are working on "healing" your relationship! My husband has been very supportive of my ataxia. The rest of my family is as supportive as they can be, although it's hard to understand ataxia unless you have it. I talk a lot to my husband about it, not so much to my grown children or others in my family, as I don't want to worry them. Thanks for sharing your story and enjoy you "daughter"! My best to you..., ;o)
Hi Tiffinay - You’re very forgiving. I applaud your focus on the wonderful child that was created.
I’ve had some “turbulence”; I think that a major thing that seeps into bizarre thinking is that the cause is invisible, so it’s easy for someone lacking such empathy to jump to a conclusion that you’re lazy.
Does this make it right? Absolutely not. Do I think that you’re a strong, courageous, and forgiving person? Absolutely.
Thanks! it is very nice to know that some people do care.
Punk said:
Hi butterfly and Neta what is wrong with the men in your life, do they not know what empathy and careing about you both mean. As if things arent hard enough. They dont deserve you both. Hugs from the Punks
We are all very supportive of Cassie. Her brother keeps getting her out and my wife makes sure she eats well. I keep her exercising and we go walks with my sister with the dogs. My brother is never in touch to ask about her. I dont know if its coz he is a jehovah witness and i am an atheist.
Does something make you say NEVER CHANGE with such conviction?
I hope I don't seem naive. I am aware that he might do it again. I am strong enough and I realize that God is the only one who is going to be forever loyal. I went to a divorce lawyer and came to the conclusion that I would be worse off financially without him.
I think about leaving but then would lose Bella, so I take what he has to offer. Plus I can't imagine having this Ataxia alone.
Thanks for your post.
Tiffinay
Lori said:
Hi Tiffinay. Well it's all on, what you can handle. He will NEVER CHANGE. No It has nothing to do with the ataxia. NOTHING!
Kids are wonderful! The feeling of being alone is not good at all. Good Luck!