My 7 yr old has fa and knows that he is wobbly. Despite me trying to encourage him to ask questions he hasn't done so yet. However, lately he's starting to pay more attention during appointments. I want to be ready when he starts to need answers. How much information do you give? I don't want to lie to him but I also don't want to overload him or be too negative. How have others gone about this? What was right and what could have been better?
Apparently, with the lack of responses given…this is a difficult thing to do. I am sorry that you even have to be faced with these gut wrenching decisions. My 7 year old has cerebellar ataxia with an unknown cause. I struggle with the same thing on a daily basis.
I am learning that for our situation, I try to give the information in little bits, I try to validate her feelings, I let her know that she is loved no matter what, I thank her for how much her body has taught us, I tell her that I will never give up on her, I remind her of all the wonderful things she can do…and I try to be kind to myself, too. This isn’t fair…life is certainly not fair, but I try to teach my children that together we will savor the life we have been given. And when I am tired, exhausted and angry at this disease, I try to remind myself that I have her with me now…and I try to cuddle my children more often, I cherish the friendship my daughters have with one another…and I put my hope in the promise that someday all our tears will be wiped away…that all our heartaches here on Earth will no longer matter.
Be strong and love deeply, my dear friend.
This is a very difficult thing to do. Out of my three kids, I think two of them have some cerebellar ataxia. They both display the same complete lack of co-ordination that I do. My sons are a very different age than yours, they are 29 and 24. As the 29 year old lives some distance from me and I don't see him very often, talking to him about something like this is difficult, the other son lives with me but I am putting off speaking to him until I know more about what exactly is wrong with them.
I do know that no matter how much information I have, talking to them will be hard but I do not even know the cause of our condition yet and I was only diagnosed about two years ago although all my life, I knew something was wrong. I can honestly say that all the time they were growing up we were blissfully unaware of how serious it would get and how quickly.
I was 8 when I was diagnosed with FA, so I hope I can be of some use. My parents just told me the basics - that I'd one day need a wheelchair etc. Just enough to have a basic awareness/ understanding of FA. They also made it very clear though that I could always ask more. Of course, when I was old enough (and curious enough) I just googled it.